on Tuesday, 30 January 2018.
Posted in Newest Info
Today it is 3 years. At approximately 10:00am on 1/30/2015 our lives took a horrifying sudden turn. It has been 3 years since Madelyn’s first seizure. So much has changed in our lives that I often wonder who we would all be had those events not occurred. At the same time, I feel that we are somehow running parallel to the path we would have been on and even though it’s not exactly what it would have been, it’s close. But enough about the past. I want to fill you in on what’s been going on since I last updated all of you. The last time I touched base about Madelyn was right after her first at home EEG study in September. Since her surgery in June, she continued to have what we thought were seizures. Multiple times a day. Medication increases based on those supposed seizures. So. Much. Medicine. So, the home study was ordered. She was to wear it for 14 days or 3 seizures, whichever came first. Only took 2 days for her to have 7 seizures. Well, what we thought were seizures. Let me back up. For those of you who don’t know, the way her EEG studies work is that when she feels like a seizure is happening, she pushes a button. This marks the “ticker tape” if you will so the doctors can pay particularly close attention to the brain activity at that time. Turns out, every single time she pressed that button, it was not a seizure. So all of those weird, dizzy, seizure like feelings she had been having since the surgery were not seizures. She did have 1 subclinical seizure in her sleep. Subclinical means that the EEG picked up abnormal brain activity, but the activity did not develop into a full-blown seizure and Madelyn was not even aware it was happening. Because of the 1 subclinical, she needs to stay on some medication, but we were able to wean her off one of her meds.
Fast forward to December. She is still having what we call “weird feelings” and another at home study is ordered. This time, again, she has no seizures during the 3-day study. Again, she has subclinical seizures (5 this time, 4 while asleep and 1 while awake) but nothing that develops into a full-blown seizure. Basically, what is happening is that a seizure is starting, but because her epicenter of seizure activity was removed during her surgery, the seizure can’t go anywhere so it fizzles away. She is kept on the medication because of the subclinicals.
As of now, she continues to have these weird feelings off and on. She will go for days at a time with nothing and then boom! She will have a bunch in one day. But her neurologist cannot stress enough that they are not seizures. We took her to her pediatrician to make sure that nothing else is going on that we may have overlooked since we are so focused on her neurological health. She has had a complete electrolyte work up and her pediatrician doesn’t feel that anything else needs to be done at this point. We are in very good but somewhat uncharted territory. In that, she is no longer having seizures, but we are so hyper focused on her (understandably so) that we all jump whenever she feels weird. It’s like we all have PTSD. Because she was diagnosed so young, seizures are all she really knows. So anytime she has a weird feeling or feels a little off, she’s afraid a seizure is starting. She gets all worked up and her anxiety makes the situation worse. It is very common for children with epilepsy to have anxiety issues. So now we just try to reassure her that nothing is wrong, and we try as best we can to go about what we were doing before the weird feeling started. But sometimes she just wants to be held and be comforted until it’s done. Her pediatrician suggested she make a list of things that might help when she feels weird. But the ideas need to come from her so she feels like she has some control over what is going on.
She will continue to have EEGs every 3 months or so to monitor her progress. Some of you may be wondering why we don’t go back in and do more surgery to remove more of the area since seizures are technically still starting there. We always knew more surgery was an option. Her doctor explained that the goal of surgery is to stop CLINICAL seizures. The ones that she recognizes and the ones that affect her daily life. SUBCLINICAL seizures do not affect her daily life; she doesn’t even know she’s having them. So, in that sense, the surgery was a huge success. She went from having 20+ seizures a day (way more if you count what she had while sleeping) to having NO CLINICAL SEIZURES. Her doctor still feels that she has a good chance of growing out of even the subclinical ones. As she grows and her brain develops and matures and makes new pathways, this may all one day just be a memory. But for now, we are getting used to our new normal, ever changing as it is. We will be back down in GR for a follow up visit this Friday. If we learn anything new or informative I’ll let you know. But more often than not, it’s usually just a chance for her doctor to lay eyes on her and see how she’s doing.
Thank you all for your continued support and love. We love you all!
on Monday, 26 June 2017.
Posted in Newest Info
Friends. Loved ones. Prayer warriors. Any divine being that can bring me good juju over the next 55+ hours. My baby is having surgery on Wednesday. They are going to thread a magic laser stick in her brain and zap out the bad epilepsy bugs. We’ve known about this day forever. We’ve talked about it ad nauseam. I’ve cried about it, worried about it, begged God, pleaded with God, cried some more (I’m crying now, shocker) been out of my mind about it. I’ve wanted this day to come, but also dreaded it. I want her to be better, but not this way. I want her brain to be perfect. But I have conditions. I want it to be magic. I want her to grow out of it like they said she probably would. Like I counted on. Like I planned on. Life’s what happens when you’re busy making other plans, right? Yup. How do I do this? How do I hand my baby off to some guy I’ve met once in my life and will see for only the second time the day of surgery and go, “Here you go! Here’s my life! Here’s my heart! Burn a hole in her brain and fix her, save her. Burn a hole to make her whole”. But that’s unfair. She’s not partial. She’s not un-whole. Just glitchy. I’ve asked “why” a million times. Why again? Why am I here again? On the brink of such a major surgery that I can’t even fathom? Didn’t we do this already? I mean, with Keith, but still. Haven’t we used up our allotted amount of time sitting in a surgical waiting room? How much can a heart take? Her surgery will be about 7-8 hours long. Just enough time for the paranoia and anxiety to take over and consume me. Swallow me whole. What the hell does one do for 8 hours while some stranger is invading their baby’s personal space? Pray? Definitely. Worry? Of course. Hope? What else is there? Most of you know, some of you may not, but I have what is at times, crippling, overwhelming anxiety issues. I’ve been dealing with it for many years. Had it really well under control. Until Madelyn got “sick”. Until she was diagnosed. These past two years have pushed me over the edge, guys. I mean really. I quite literally lost myself in the beginning and it’s been a slow climb back. Clawing my way through the mud with each unsure step trying to drag myself through. I’m not back. Not yet. I’m so afraid for Wednesday. Like, irrational, crawl in a corner, curl up into a ball in the dark and lose myself in hysterical crying, type of fear. My intellect tells me she will be fine. That this will work and she’ll be “cured” and we’ll go on. But the anxiety monster looms. And he’s louder. So much louder. And the what ifs start. (Oh my gosh, I just typed shart. And then I laughed. Thanks universe! I needed that.) Oh the what ifs. Such a slippery slope. I see that my ramblings have drifted to a dark place and focused on me. I don’t want that. This wasn’t intended to be a “woe is me” sort of thing. I just need prayers and positive thoughts for my baby girl. Maybe a few for me too. Just so I don’t go insane. And so I can be strong for her. I’ll post more later about the technical side of the surgery. I have a cool (well, I think it’s cool) YouTube video to share. It’s not gross, it’s an illustrated depiction of what they are going to do on Wednesday. I mean, it’s pretty high tech. A robot is going to set her all up, get things ready for the doctor to do the actual surgery. So, you know, she’s kind of like bionic now and whatnot. I mean, they’re not implanting anything but how many people can say a robot did surgery on them? I’m sticking to not a lot. Thanks for letting me dump this out into cyber space. Sometimes you just need to get it out so it can lose its power over you, you know? All my love to you all.
on Saturday, 21 February 2015.
Posted in Newest Info
So, here we go. I know I promised to update this eons ago, but so much has happened and I have been so overwhelmed and exhausted. But, in an effort to keep everyone updated as much as possible, I will start from the beginning of this last episode and work through the events.
Sunday, February 15th (my birthday)
We woke to a very nice day. Keith and Jackson made me breakfast in bed while Madelyn and I snuggled and watched Netflix. We had a few errands to run before Keith and I went out that night. So we all got ready and headed into town. After running our errands and stopping off at Keith's parents, we dropped the kids off at my mom and dad's so Keith and I could go to a movie and dinner. The plan was to pick up the kids later that night and have cake at Mom and Dad's. After sitting through the 10,000 previews our movie finally began. 5 minutes in (no joke) I feel my phone buzz indicating I got a text message. Thinking it was someone wishing me happy birthday, I quickly took a look. Here's what I read from my dad: Madelyn is acting dizzy. CALL US. I whispered something to Keith about needing to call Mom and Dad and sprinted out of the theater. As I paced the hallway, I talked to Mom and she said that Madelyn was sitting on the couch watching a movie on the iPad and she spread her arms out against the couch, turned her head to the right, and started staring off into space. Not wanting to put any ideas in her head, Mom simply asked Madelyn what was wrong. She responded by saying she felt dizzy. Mom held her and looked in her eyes and it was very apparent that Madelyn would look at her but not see her. Jackson and Dad were in the kitchen as they had just started to make cookies. Mom had Dad come out and text me. Mom and I discussed what to do. Madelyn was still concious and would answer questions with one word answers, but would not talk otherwise. Her eyes and head kept drifting to the right and would then roll back around. After talking it through, Mom and I decided they should call 911 and get Madelyn back to the ER. Even though DeVos had told us to get her back to the ER and then down to them if she had another episode, it's still always hard to know if this is a 911 worthy event. It sounds weird unless you are in the situation. So I hung up telling my mom to keep me posted and we would meet them at the ER. I went back in the theater and got Keith and we headed to Munson.
On the way, I happened to think that our local pediatrician's office uses Spectrum Health's (they run DeVos) after hours nurse service. I thought that if I could get through to someone at DeVos, I would be able to talk to someone familiar with her case to tell us what to do. I did get through to a receptionist that informed me that once Madelyn was in the ER, the ER doctor would call down to DeVos and a game plan would be set in motion.
We arrived at ER way before the ambulance did and I wore a nice groove into the ER waiting area with all of my pacing. I called Mom to see what was happening. She said that Dad had held his finger out to Madelyn and asked if she could see it (yes) and if she could follow it with her eyes. She either couldn't or wouldn't. But by the time the ambulance got to the house, Madelyn had started snapping out of it. She was talking to the first responder (whom we happen to know) and could follow all of the directions they gave her. It was decided that the ambulance would take her to ER (what if something happened in the car?). Mom would ride with Madelyn and Dad would follow with Jackson. Of course we hadn't left any of their car seats with Mom and Dad. Luckily, the ambulance had a booster that they let Jackson use.
We were brought into Madelyn's ER room and aside from acting a bit tired, she was pretty much herself. Surprisingly, we had the same ER doc as the first time. This made me a bit worried. Would they drug her up again? Would they intubate her again? They did get some blood which broke my heart as Madelyn cried and cried. They were going to get a normal workup, but the doc told us that they didn't see anything last time, and she suspected they wouldn't this time either. She told me they had a call into DeVos and were just waiting for a call back. But that she would be transferred back down to Grand Rapids either by helicopter or by fixed wing if the chopper couldn't fly because of weather. The last time, remember, DeVos's chopper came up and got her. This wouldn't work this time because both of those aircraft were already out on calls and to wait for them would mean about an hour. It was determined that our chopper couldn't fly (why I don't know) so we would go fixed wing. This was better since that meant Keith could go with her. Our chopper is too small for any family to go with the patient. I CANNOT imagine sending my 3 year old baby in a chopper down to GR without one of us with her. Especially since this time she was totally with it. I am so grateful that Keith was able to go with her. So the flight team came and got her again. She went by ambulance to our airport and my heart once again flew away into the unknown. It was awful.
At this point, I went out to the waiting room to discuss the logistics with the grandparents and figure out who was going, who was taking Jackson, who was taking Chloe, etc. We decided that not everyone needed to come this time. I would go down with Mom, Chloe would stay with Keith's parents, and Jackson would spend that night with them as well and then go to Dad's the next night. I went home to throw more crap in a bag which sounds easier than it is. How many changes of clothes do I bring? I still have to pack for all of us plus the dog. It took forever. I think it was about 7 by the time we left the hospital. By the time I got packed, it was 10. I know, sounds ridiculous, but I had to make sure I had Jackson's school stuff, Keith's meds, clothes, food etc. for Chloe, a change of clothes for Madelyn to come home in, ugh, it was endless.
By the time I got Jackson and Chloe dropped off and then over to Mom and Dad's, it was 11. I. Was. Exhausted. Dad and I discussed me staying there that night and heading down early with Mom. As much as I wanted to get to Madelyn, I also knew that driving exhausted on the horrible roads we had and getting down there at 2 or after in the morning, getting no sleep in the hospital really wasn't going to change anything. I called Keith and we talked about it. Madelyn was doing well. She had laughed and joked with the flight crew the whole way down, no tests were scheduled for that night, she was in the ICU again so they would be coming in every hour to do vitals (so no sleep for anyone in the room) and Keith can really sleep anywhere so he would be good. I decided to force a sandwich down my throat (I still hadn't eaten dinner) and leave Mom and Dad's by 7 the next morning. Somehow, I fell into a deep sleep.
Monday - February 16th
Mom and I were up and ready to leave at 7. The roads were HORRIBLE. If I had attempted to drive down the night before, I probably would have turned around. It was nothing but packed down snow that had been plowed to a slippery, treacherous, terror inducing sheet of ice. 131 finally cleared up way south of Cadillac (I really have no idea when) and I finally felt like we were on our way. I was hoping to have been there pretty close to around 9 since I had Keith's morning dose of pills (he thankfully had his previous night's dose on him when he took off on the plane). He had a couple hours of wiggle room to take them, but still. Keith called and let me know that the EEG team had come in to hook her up again. She was going to have a continuous EEG this time which means it could last anywhere from 1 hour to 1 day. Being that she was not on any sedation medication, they would be able to get a great look at her everyday brain activity. Mom and I finally arrived around 10:30 (good gracious) and they had just taken the EEG equipment off. She had had the scan for 45 minutes. Why it didn't go longer, we don't know. They do monitor it while it's being done, so they must have felt they had enough info. At that point, it was pretty much sit around and wait. A different neurologist from who she saw last time came in to talk to us. After reviewing her EEG from today and comparing with the previous two she had, it was determined that she has epilepsy. The same slowing on the left hand side of her brain was present in this newest EEG. There's a saying that the last doctor to come into a case is the smartest. Basically that's the person that usually figures out what's going on, only because he or she has the benefit of taking all of the pieces of the puzzle and putting them together. Although Madelyn didn't have a seizure while on the EEG, she did have the same slowness. Using that info, going back to look at the MRI and hearing all of her symptoms was enough for him to put it all together. The area in which she has the slowing is in her occipital region of her brain. This is where sight is processed. So when she is seizing, it messes with her vision and she "can't see". Now whether this means she actually can't see anything, she sees spots, flashing lights, blurred vision, cut off vision, we won't know until she has the communication skills to verbalize this. But at any rate, it messes with her vision. The fact that she says she's dizzy doesn't necessarily mean to her what it means to us. It can, but it can also just be her way of saying she feels weird or off. Being epileptic just means that she has had at least 2 seizures that have no external stimulation like lights or whatever. So she doesn't have any triggers that set her off. It's strictly something in her own brain that is short circuiting in a way. The treatment is medication. She would take meds twice a day to prevent the seizures. This would be for a minimum of 2 years. If she has a seizure in that time frame, the two years resets. Also, if she is to have a seizure, we have emergency medication to give her if it lasts longer than 5 minutes. A "typical" seizure is around 2 minutes. Hers have been lasting for 15-20. I won't go into all of the details, but we have specific instructions on what and how to administer the emergency meds. If we chose not to medicate, there is an 80% chance she would have another seizure. If she is medicated, there is a 33% chance she will have another. And, most likely, this is something she will grow out of. 66% of children do. The younger she is when they start, the more likely she is to grow out of them. The side effects of the drugs include dizziness (hmmm, already a symptom), tiredness, and rashes. Keith and I agreed to start her on the meds. She will be on his same dosing schedule (convenient). The meds she is on daily work best for focal seizures like hers. She was given a mid range dose to start. We have lots of room to grow and increase in case the seizures start up again. She was started that day to make sure she wouldn't have any kind of reaction (she didn't). She was still in the ICU which she didn't need to be. So back down to the 6th floor we went. We now felt like veterans and we knew the drill. We went and got our own slushies from the nourishment room, we took her to the playroom, ran the TV like a pro (they've got a weird system down there).
Aunt Kari came to visit us. Madelyn wasn't very talkative, but would laugh when Aunt Kari tried to "pinch her buns". Her IV site started to bleed again (it did this up in ICU too and the nurse had to re-tape it which made Madelyn scream like there was no tomorrow). It was decided that since she was taking all of her nourishment orally, she didn't need the IV at this time so we could take it out. Again, more screaming, but at least this time there was a much better ending. We watched Despicable Me 2 for the one millionth time, ate dinner, had a bunch of slushies and tried to snuggle in for the night. Keith slept with Madelyn since she wasn't hooked to anything anymore and Mom and I slept on the pull out couch.
Tuesday, February 17th
So during all of this, Keith was supposed to be getting his blood work done for his clinic visit happening on Friday. He was able to have Munson fax his orders to DeVos and got his blood work done this morning. Good. Gracious. Mom and I tried to get ready, but we knew as soon as one of us got in the shower, the docs would come in to talk to us. So we waited. The neurologists came back and went over the emergency meds with us. They gave us their numbers to call them 24/7. We would be able to go home today!! We asked a bunch of questions. Does she have any restrictions? Not really. Since they are not triggered externally, there's nothing we need to keep her away from on a stimulation level. We need to be extremely careful around water. Showers are preferable. If she has an episode while in the water, she could be under in an instant. If she does takes baths, she will need to be monitored the whole time. We do this anyway since she's 3, but we can't even run out for a second. When swimming, she needs to be in a life jacket at all times. Especially in murky water where it would be hard to see her if she went under. Again, we do this anyway, but need to be even more diligent. No bunk beds. No lofts like Jackson has. She cannot be in his bed. A mattress on the floor would be preferable. Her bed is pretty low to begin with, so I think we're ok there. If she has another episode, we are to call them and let them know, but she doesn't necessarily need to be ambulanced to ER. Definitely not flown to DeVos.
So we were discharged and we headed home. My baby girl has epilepsy. It's scary. But it could be so much worse. I know that in my head. But my heart is scared poo-less. I watch her like she's a ticking time bomb. Did we cut the right wire to diffuse the bomb? When is she going to go off? Will she go off? All of her caregivers need to be taught how and when to use the emergency medicine. What signs to look for. How to practice seizure safety. They will all have the number to call the neurologists. Madelyn has a little bag that needs to go with her everywhere now which contains her meds and numbers. I am only really comfortable when she sleeps as she is way less likely to have one while sleeping.
She is so good about taking her meds. I am so very proud of her. She says it tastes like lemonade which made Jackson want to try it. Umm, no. She gives it to herself and knows when Mommy's phone goes off for Daddy's meds, she needs to do it too. She has the whole routine down. A sip of juice, then she squirts the whole syringe into her mouth, then more juice. Like a little pro.
Everything becomes a logistics game with me now. If we're out somewhere, I find myself looking for places I'll take her if she has a seizure. I have my phone ready to time it. We also want to record it so the docs can see exactly what she does. What happens if it's in the car? I know I have plenty of time. 5 minutes of seizing before we take action is an ETERNITY. The what ifs are going to kill me. I'm hoping time will help. She doesn't really remember anything. I've tried talking to her about it. She remembers being at Mimi and Papa's house and being on the iPad, but not much after that. It's hard not being able to know exactly what she's experiencing. It's so hard not knowing anything. That's the control freak in me. I want to make it better, make it go away. Time will tell.
on Sunday, 08 February 2015.
Posted in Newest Info
Well, here we are on Sunday, a normal Sunday that started with giggles, movies, and waffles. Looking at Madelyn today, no one would ever guess that she was in ICU a week ago. So much has happened since I last checked in with you. I'm sorry about that. Between coming home and trying to get things back in order, to being terrified and hovering over Madelyn like a crazy woman, I just haven't taken the time to update the blog.
So this past Wednesday we woke up and Madelyn was so much better! She was like our little girl again. Her droopy eyes were gone. She was getting chattier and was getting restless hanging out in our room. She played with the controls on her bed non-stop. All good signs that her true self was emerging from it's protective cocoon it had been in. We had a very busy morning. Bonnie from PT came back to check Madelyn's coordination. We walked to the playroom, Madelyn jumped around, she went up and down steps, she raced her Daddy! Bonnie could not believe the difference. It was like watching a different child from the person she had watched only two days before. Madelyn was excited to be running around and kept asking to climb the stairs again! There are different colored circles on the floor of the waiting area on the floor we were on. Bonnie had Madelyn jump in and out of the circles. Madelyn was so excited with that game and asked to do it again and again. It was remarkable. Bonnie said that Madelyn showed no lasting effects of her episode or the medication she was on. No need for outpatient PT when we get home! Keith and I almost cried.
After that, we were visited by the neurological team. There was a med student present that would be doing the tests to check Madelyn's reflexes and what I'm assuming are the connections in her brain telling her to move her various body parts. Madelyn was so cooperative and did so well. The lead neurologist kept remarking to the med student that she will never again have a 3 year old who is so willing to follow directions, she'd better enjoy it! Madelyn passed the tests with flying colors. The whole team was blown away by her progress. Keith and I really feel that Madelyn's troubles with coordination and movement were really just effects of all of the sedation meds. Madelyn has a follow up EEG on March 16 because there is that matter of her left side of her brain having a little slower activity than what is usual. We are holding out the hope that the slower activity was due to the meds as well. We will see.
After that, the nurse came in to say she was working on the discharge process. The eye doctor's office is located right across the street from where DeVos is and once we are discharged, we have an appointment in their office to get Madelyn's eyes checked. Knowing the discharge process like we do, we figured we had a few hours, so I went and got us some lunch. Pretty much as soon as we started eating, the nurse came back in to say we were free to go! That was quick! We scarfed down the rest of our lunch and packed the few things that were not packed yet and headed across the street. It was very strange to just walk out after the whirlwind that brought us down there.
We got to the eye doctor and they performed their various tests on her eyes. It was interesting to see the different methods they used to gauge her ability to see. Then we learned that they needed to dilate her eyes to make sure the retinas and optic nerves were ok. Madelyn hated that part. But after waiting 35 minutes for the drops to take effect, it was determined that her retinas and nerves were perfect, thank you very much. She has great eyesight and there is absolutely nothing wrong in that department! So now we were truly on our way home!
It was a long drive. Keith and I were exhausted. So was Madelyn. She fought sleep all the way home. I asked her 1000 times how she was feeling. She probably thought I had lost my mind.
That night was a hard night. We had Madelyn sleep with us. I felt bad letting her and not Jackson, so he joined in the fun. It was a bed full. Madelyn had a very restless night. She cried out in her sleep a lot and kept saying "no" and whining. She tossed and turned a lot. She said "don't touch me" a lot. It was heartbreaking.
The next morning was hard. We did the same routine we had the Friday that it all went down. As the time drew nearer of when the episode actually happened, I was in full panic mode. But after the time went by, I relaxed considerably and the rest of the day was easier. Nap time was hard. She dreamed a lot again. When she woke up, she was disoriented and cried for a while. But she was better when Jackson got home from school.
The next day was Friday. Exactly one week since the episode. It was hard on me again. But it got better again. I'm sure Madelyn is so sick of me asking her if she's ok or how she's feeling. One thing that really bothers me is that Madelyn keeps asking me to paint her nails. That is the last thing we did before she got "sick". I am scared to death to do it. But when she was in the hospital, they had to remove some of the polish on a couple of fingers and toes. This really bugs Madelyn and she wants it fixed. I'm putting her off as long as I can.
Saturday we spent the day running errands in town. We took the kids to Home Depot for the DIY kids' project they do the first Saturday of each month. Madelyn loved it! It was her first time, Jackson's second. They were so cute together building their little project. It was a typical Saturday. But very strange to look around and think, "One week ago we were in the ICU in DeVos". Surreal.
So that brings us to today. I go back to work tomorrow and Madelyn will go back to Keith's parents' house like she does every other work day. I feel that I will need frequent texts letting me know she's ok. I'll be freaked out for a while. But it will pass. It was the same with Keith. A little different though when it's your baby. Madelyn has a follow up visit tomorrow afternoon with her local pediatrician. Not sure what they are going to tell us. It will probably just be an appointment where Keith and I relay events to the doctor again. But just that confirmation that she is still doing well will be good I think.
I broke down and painted Madelyn's nails this morning. It about pushed me over the edge. But she has been asking and doesn't understand why I keep telling her no. I cried while I was doing it. I had a panic attack. I wouldn't let her sit on the couch and watch TV while the nails dried because that's exactly what I did the last time and then the whole thing started. I did it in the kitchen with the ceiling fan whipping so the fumes wouldn't be so horrid. It was hard. But I did it. It will be easier next time. I'm thinking of investing heavily in those nail sticker things instead of nail polish. Probably won't fly with my little strong willed girl who knows exactly what she wants. We'll see.
Thank you all for your support and words of encouragement. All my love.
on Wednesday, 04 February 2015.
Posted in Newest Info
So let's see. What happened after her nap with Daddy? Well, lunch came and we all ate together. Keith and I discovered that if you take the bridge across the road to some building (I have no idea what it is) there is a little food court with Qdoba, Zoup, some hamburger place, and a Starbucks. We have been getting a little sick of cafeteria food so I went and got us some soup and sandwiches from Zoup. It was so good! After lunch, we decided to take Madelyn back to the playroom. I wanted to see her walk and play some more. She did so well! Her balance was much better and her walk looked pretty normal to me. She played with the train set again, we read a book, she colored, we listened to Mary Poppins on my phone, she was able to put shapes in their correct slots on some toys, she played with those magnetic "paper" dolls, just did normal kid things. We played for quite a while so we ventured back to the room for a little nap.
Right about then, Aunt Kari and Uncle Troy came to visit! They gave her a very cute little baby doll. Unfortunately, Madelyn was very tired and slept the whole visit. She did wake up right as they were leaving and was able to fist bump Uncle Troy and gave Aunt Kari a high five. Her coordination with that was much better as well. While she was napping, the physical therapist came back to see her. There was no way Madelyn would have played anymore if we would have woken her up, so we just explained how she had played and that she did much better. The therapist did want to see it for herself, so she is coming back tomorrow morning after breakfast.
Our nurse practitioner, Jodi, came to let us know that they got the results of the EEG back. It did show some slower activity on the left side of her brain. It was the same thing they saw on the first EEG. Madelyn did not have a seizure while on the machine (remember the test only shows seizures that are happening, not that have happened) but the slowness could be indicative of the possibility of future seizures. But on the other hand, Jodi told us that people who have very pronounced seizures sometimes have normal EEGs. So just because she has slower activity that could suggest future seizures, it in no indicates that she will have one. So basically, they had no new news to tell us. The team here is as frustrated as we are. They would love to give us a diagnosis. But, unfortunately, that is not going to happen. The good news is, they have ruled out all the really bad stuff. Blood work, good. CT, good. MRI, good. We did get Madelyn to show Jodi her improvement in walking. Jodi said it was like night and day from yesterday. I held Madelyn's hand, but not for support, just because I wanted to, and Jodi remarked to Keith that Madelyn's gait was totally normal. So basically, because they really aren't doing anything for us at this time, i.e. Madelyn is taking her meds orally, she's not hooked to any monitors anymore, and there are no future tests, she is free to go home. We could have left tonight, but it was already almost 6, the roads down here aren't so good, and Keith and I are so exhausted, we don't really want to drive home in the dark. Plus, we all agreed that we would like one more night here to see what tomorrow's progress brings. Plus we have the PT appointment in the morning. I did ask Jodi if an eye doctor was still scheduled to come see Madelyn. I explained that we had talked about it the day before with occupational therapy. She felt that was a great idea and will call the ophthalmologists to see if they can come over in the morning to check her eyes. Madelyn has been rubbing her right eye a lot. I asked her today if it hurt or if it felt funny. She said it felt funny. I covered her right eye and asked if I looked normal to her left eye or if I looked funny. I looked normal. I covered her left eye and asked again. I looked funny. But then when I did it again, I looked normal in both eyes. So maybe she doesn't understand, or maybe her sight changes that quickly. We'll see.
So the plan now is to go home tomorrow. Since Madelyn is having trouble walking still, we will do outpatient physical therapy. She will need a follow up EEG in about 4-5 weeks and a possible re-do of the MRI. (The one she got down here was a little blurry in some areas because Madelyn moved. All bad stuff like a tumor or mass was ruled out, but the subtleties couldn't be seen because of the blurriness. We'll have a list of things to watch for regarding seizures and what to do if it happens. I asked if we should stay closer to the hospital for a few days by staying with family we have down here, but Jodi said if we are well enough to be discharged, we are well enough to go all the way home. If they let us go but asked us to stay close, then we shouldn't really be being discharged.
Everyone understands that this is not the ideal situation. They know it's scary for us to leave without a definite answer. They get it. We've been told time and again that this is not how they like to leave things. But sometimes it's a fluke, sometimes the problem hasn't fully presented itself yet (which we totally get from Keith's stint in Ann Arbor) but it's still hard on us. It's nice to know that they understand that.
I'm getting more tired now and my thoughts are all jumbled together. I know there is more that I could write, but I need sleepy right now. All my love to all of you. Thank you so much for everything!
on Tuesday, 03 February 2015.
Posted in Newest Info
Yesterday was a busy day. Occupational therapy came to see Madelyn and we all went for a little walk to the nurses' station. Madelyn did pretty well on the way there. She walked a little "heavy". Kind of flat footed and plodding along. On the way back, she got tired and leaned into Keith for a little help. She then got a little ahead of herself and started leaning forward sort of walking on her tip toes. But she made it back to her room mostly by herself. The therapist then had Madelyn follow a little light with her eyes. Instead of having her eyes move alone, Madelyn would follow along by moving her head. And both eyes were not really moving in synchronization. They were not "tracking" as they call it. This could be causing her to see double or have blurred vision. Which could be making her fell dizzy or have an upset stomach which is what she was complaining about when the whole event started. It still is possible that she's like this because of all of the sedation she was under. Time will tell as that slowly works it's way out of her system.
After that it was time to move to our new room! We moved down two floors. The rule of thumb in a hospital is the closer you are to the floor, the closer you are to being discharged. So we're movin' on down instead of up, which I'll take any day! Madelyn got to ride in a wagon with all of her balloons and stuffed animals. She had a lot of fun until we got into the room. Then she became upset by all of the changes and said she was scared. We think that maybe she couldn't see well on the way down here because after she calmed down a bit, she looked at Keith and said "there you are Daddy". It's so hard to know at this age since they don't have the vocabulary to properly explain what they are experiencing.
Jackson came to visit her yesterday! She was so happy to see him! I think it was a little hard for him to see her in the hospital. He was pretty quiet and kept to himself for a few minutes. All of a sudden, Madelyn became very upset and it was discovered that her IV site was bothering her. Mom, Dad, and I took Jackson down for lunch so he didn't have to see them working on Madelyn. Turns out her site was going bad, which has happened to Keith and he said it hurts really bad. So they decided to just take the IV out and leave it out. She is eating and drinking well enough that she no longer needs fluids via IV. And her meds she can take orally. She was in a much better place when we got back from lunch and was excited to open the presents that Jackson and Mom and Dad brought.
We then had a visit from Physical Therapy. She had Madelyn walk to the playroom that's right down the hall and play with some toys. Madelyn did a whole lot better than the first walk although she was still very wobbly on her feet. She is very purposeful in her movements, meaning she knows where she wants to go and gets there, but her spacial reasoning is a bit off. She can reach for a toy no problem, but when she gets to it, she can't quite grasp it. It's like she's seeing it in a different place from where it really is. Makes sense if her eyes are working together. She was very excited to play and was able to get up and down from a couch, pick objects up off of the floor, push a toy train around on a track, play in the toy kitchen, and blow into a toy trumpet which required her to push buttons to make the noise. Very encouraging, but it's like watching her learn to walk for the first time. The therapist let us know that if she continues with this behavior when we go home, we have to treat her as though she is just learning to walk. She is at risk of falling all the time. We'll need to put gates back up, get her back in her crib, keep sharp furniture out of the way. Chloe is going to knock her down all of the time. She did when Madelyn was steady on her feet. The therapist said that she sees this type of behavior in kids that have a tumor pressing against their cerebellum in the brain. But Madelyn's brain scans have all come back clear so it's a bit confusing.
Shortly after we got back to our room, the neurologist and his team came in. He wanted to watch her walk some more, but Madelyn was tired and it took much coaxing from us to get her to walk back to the playroom. But she was a trooper. Keith told the doctor the whole story from beginning to end. It is possible that she had a seizure, but if so, her actions at home are very non-typical of a seizure. He wants to do another EEG to check her brain activity while she is not under the effects of medication. So one was scheduled for today. We asked him about her eye droopiness and her apparent sub-par coordination. He really feels that that is occurring because of all of the medication she was on sedating her. She was on very heavy narcotics in addition to straight sedatives. Again, only time will tell.
Madelyn had a good night last night. Because she is no longer hooked to anything other than a heart monitor, I was able to sleep with her. She got up a few times to go to the bathroom, and of course they nurses come in to check vitals, but otherwise, she slept soundly.
When she woke up today, she was more herself. Her eyes aren't as droopy and she is talking a bit more clearly. But still not the chatterbox she was. It's her, just a more subdued version of herself. She had french toast for breakfast and then shortly after, the neurological team came in to get her ready for the EEG. They have to stick about 27 electrodes to her head which was no problem when she was sedated. She was not as content this time around. First they have to measure her head and make a bunch of marks of where the electrodes go, then they have to attach the electrodes. Madelyn cried the majority of the time. It was such a sad little pitiful cry. You could tell she was just over all of the poking and proding. That part was finally finished and they were able to start the test. Madelyn fell asleep which is actually what they like for the first 20 minutes. Then we had to wake her up. Oh. No. She was MAD! She had been sleeping so well that we had a hard time waking her up. Then she just tried squirming and rolling over, which we couldn't let her do or it would rip off the electrodes. So we had to restrain her which just made her irate. They weren't able to do the light stimulation that they like to do, but they did get a full 30 minutes of test results to read, so they were good. They took the electrodes off and it took Keith a while to get her calmed down again. We snuggled her in the rocking chair with her daddy and started watching a movie. She was out in 10 minutes. I am sitting here watching her and her daddy sleep hoping that soon my rambunctious, free-spirited, chatty little girl will find her way back to us. I am terrified that she won't come all the way back. But only time will tell...
All my love to all of you and thank you for your continued well wishes and prayers. I am going to get us some lunch while they are asleep. Madelyn's was just delivered, so maybe we can all eat together.
on Monday, 02 February 2015.
Posted in Newest Info
We had a good night. Madelyn slept on and off throughout the night, which meant Keith and I took turns getting sleep ourselves. Madelyn is getting better. Sometimes in leaps and bounds, sometimes it's a bit slower. She was on forced oxygen through her nose tubes throughout the night. The cannulas really bother her because they are annoying, but also because when they accumulate moisture, any move she makes to shift positions makes that moisture shoot into her nose. The "wetness" makes her think she has a bloody nose, which she hates, so it gets her very worked up. It takes us a long time to convince her that she doesn't have one. She likes to sleep on her side, but it's hard to do with all those tubes and wires hooked to her, so she's finding it hard to get comfortable. She is being such a brave little trooper though. If we explain to her what is happening, she's much better about staying calm. Just so many new and scary things.
She keeps telling me that she either wants to "get out of this place" or simply "I want to go home". For quite some time she kept asking if this was her room at home and would get very upset when we tried to explain that we weren't at home. We've tried not to say she's in a hospital, just that she's somewhere getting better. Because of Keith's stay in the hospital, I think she would think she's going to be here for a very long time.
Last night she was very thirsty so she was able to drink lots of juice, water, another popsicle, and even had two slushies! By this morning, she was put on a general diet so she can eat and drink anything. She had a waffle and Rice Krispies! She is a hungry little thing! Right before breakfast, it was decided that they could take her off the oxygen! So the tube was removed and she was very relieved! They still have her hooked to an IV because she needs antibiotics every 6 hours, and I'm assuming she will have it the whole time she's here in case she needs it, but they are no longer giving her fluids through the IV since she is drinking so much and going to the bathroom a lot. No concern of dehydration. They put little sticky pads on her cheeks for the nose tube to rest against so it doesn't irritate the skin. When the tube was taken out, they left the cheek pads on in case they need to start the oxygen up again. While Keith and I were getting her breakfast ready, Madelyn decided enough was enough and yanked those things off her face by herself. She knows what she wants! She is breathing fine on her own. Her oxygen saturation fluctuates between 95 and 100 which is awesome! Her heart rate is still a little high, but not really anything of great concern. Could still be the meds as they are wearing off.
The doctors want so badly to figure out what the cause of the whole thing was. They still do not know. We may never know. This, of course, terrifies me. I'm trying not to go down the "what if" road. It's hard.
They want Madelyn to get up and try walking today. She's sleeping again right now, so hopefully after she wakes up we can go for a little walk. She is being moved out of the ICU today onto a regular floor. So we are making steps in the right direction. We can tell she is very weak because when we take her to the bathroom, Keith bears all of her weight. So we'll see how the walk goes.
That's about all for now. Hoping I can get a nap in later on. Keith and I are exhausted. But our sweetie pie's smile is keeping us going. All my love to you all!
on Sunday, 01 February 2015.
Posted in Newest Info
First I want to say thank you for all of your support!
So much has changed since I left off yesterday that instead of going back and trying to catch you all up, I'm just going to start from this morning.
Keith and I were able to get some rest and take showers which felt wonderful! The hospital has a few rooms (4) which are "hotel" rooms for families to use. We were chosen yesterday to be able to use one. I slept last night while Keith stayed with Madelyn. The plan was for me to come down early morning and we would switch, but Keith was able to get decent sleep during the night and he didn't want to leave her when I came down. So he went back to sleep on the fold-out bed/chair in her room. I stayed for about an hour, but then decided it was dumb to let a perfectly good bed go to waste! I went back upstairs and slept for another two and a half hours.
After coming back to Madelyn's room, Keith and I went to go get some breakfast. Madelyn was doing well and had some breathing treatments through the night. The plan was to take the tube out this morning. She will be awake for that as they stop the sedation so of course she will want mommy and daddy with her. So we scooted downstairs for a quick bite. As we were finishing, Madelyn's nurse, Heidi, called my phone and said they were ready to take the tube out. Back upstairs we went!
There is a lot of prep work to extubate a patient. But Madelyn came through with flying colors! She is very hoarse, and her lungs are still a little gunky, but she is talking, is very aware of things around her, and wants to rip all of her tubes off! She does still have an IV and those small nose tubes which is forcing oxygen into her although she is breathing on her own, and other wires monitoring her. She hates them!! Mainly, she just doesn't understand why they are there. Especially the nose thing. She keeps thinking she has a bloody nose. Poor thing.
She is obviously confused about where she is and what day it is. She asked if she could take her Minnie Mouse doll with us when we go get Jackson (from the bus). So she must sitll think it's Friday and we just are waiting for Jackson to be done with school. She asked if this was her room, and Keith tried to explain that it was a different room and not hers. This made her sad and she started to cry.
Her Mimi and Papa Schaub and cousin Samantha brought her a My Little Pony balloon and the My Little Pony stuffed animal Rarity. She was very excited to add that to her MLP friends at home! She asked to hold her and when I asked which MLP it was, she knew! (MLP = My Little Pony) :) Then a delivery of balloons and another stuffed animal came from Uncle Adam, Aunt Cindy and Charlotte! Madelyn was very excited and asked to hold the stuffed animal right away!
She said she was thirsty so we gave her one of those sponge things on a stick to soak up some water that she could suck on. She was adamant about wanting to do it herself! She has quite the little stubborn streak which is so nice to see! Getting back to her old self! She then said she was hungry so Heidi went and got her a popsicle. Holy man!! She was all over that thing! Of course she wanted to do it by herself, but it was the kind you have to squeeze from the bottom, so Keith had to help her a little bit!
Going to the bathroom has been a bit of an issue for her. She was catheterized when she first got here up until yesterday. She's had a diaper on since then. She has been potty trained for quite some time, so we have been trying to convince her that it's ok to go in her "special underwear". I don't want to tell her it's a diaper because that's what babies wear and she knows she's not a baby! She absolutely would NOT go in the diaper after she got the tube out this morning and her little bladder was so full that you could feel it through her belly. It was like a rock. So we decided to slide a bed pan under her (she kept trying to sit up so we figured, get one under her and she'll think she's on the potty). She went a ton! Such a relief!
Since that time, we have brought in a little potty chair that she can use. It takes a moment to get her unhooked enough to get her on the seat, but she's able to hold it until we get her over there and she has been so good about letting us know she has to go.
She is resting comfortably again. Her breathing sounds a bit labored. If you've ever known anyone with pneumonia, you can imaging what she sounds like. But we've been assured it's all completely normal and she is doing great!
So I know I was out of it writing the blog last night and can't remember what all I let you know. All of her tests have come back completely normal. They cannot figure out what prompted the episode she experienced. Once she is more fully awake, the neurologist is going to do a re-assessment because what they did when she first got here was out of whack since she was so sedated. They are also going to have physical therapy and occupational therapy come in tomorrow to do an assessment to make sure she is using both sides of her body equally, that she can speak ok (other than the tube will make her hoarse for quite some time), and we will have to watch for thing like making sure her gait isn't off, that she doesn't complain about not being able to see. Anything that would require her to need a more in depth neurological assessment. They don't expect this, but we need to cover all of our bases.
Jackson continues to have fun at Camp Zapolski! Aunt Kari and Uncle Troy are taking him swimming today (Lauren too!). Then he is going to a Super Bowl party for dinner (of course he wanted to know what they were going to have to eat!). Madelyn misses him, but we'll need to wait until she is less hooked up since this would still be scarier than Jackson needs to see.
Keith is down eating lunch with his parents and niece right now. I am sitting beside my beautiful baby girl. Thank you all for your words of encouragement, prayers, offers of help, EVERYTHING! We are so very thankful that we have each and every one of you in our lives. We are not out of the woods yet, but we can see the clearing! I will update you more as I can. This blog will not be as informative as Keith's. I don't have nearly as much downtime. Plus she's my baby who will not understand if Mommy is off writing on her computer instead of loving on her. This momma would not do that anyway!! My love to all of you!
PS - I do want to add that the entire team here at DeVos has been WONDERFUL! They have my utmost respect and I trust whole heartedly that they are giving Madelyn the best care possible. I wouldn't want her anywhere else!
It has been another whirlwind medical mystery tour for our family. On Friday morning, I was home with Madelyn. It was a normal morning. She had breakfast, we took Jackson to the bus stop, she hung out with Keith and watched cartoons while I took a shower, and then she came in my bathroom with me while I got ready and put on my makeup. She put on her "makeup" too and then we painted her nails and toe nails. As is our usual routine, I put her out on the couch to watch TV and let her nails dry. All of a sudden, Madelyn looked at me funny and said that she felt dizzy. She does tell me that from time to time because for some reason she thinks it's funny. I kept asking her if she really did because then she started acting funny. She was swaying from side to side and looking really spacy. I kept telling her to look at me and she wouldn't or couldn't focus on my face. Then she told me she couldn't see me. I asked her if she was going to throw up (for some reason I always think the kids are going to throw up when they act weird) and she said yes. So I took her to the bathroom but she didn't throw up. She started saying things that just did not make sense. I raced to find a phone to call Keith to come upstairs. Thankfully he answered and came up to check it out. At that point she was talking, but not making any sense. I then called her doctor's office to see what I should do. Which was stupid in hindsight. I should have just called 911. But the nurse told me to take her directly to ER. At this point, Madelyn had deteriorated even more. She was completely limp, her color was a reddish purple and her eyes were wandering all over and not focusing on anything. I told the nurse I was calling an ambulance. It felt like they took forever to get there. Right before they arrived, Madelyn voided her bladder and urinated all over. When the EMT's arrrived, they laid her on our floor for an assesment, discovered that she was not doing well, and scooped her up and announced they were taking her directly to the hospital. Neither Keith nor I were allowed to ride in the rig with them. (There just isn't enough space, plus they don't need to deal with parents who might become hysterical.) So Keith and I took off for Munson. The longest 25 minutes of my life.
Upon our arrival to the ER, Madelyn was unresponsive but concious. They were trying to intubate her (putting the tube down her throat so they could breathe for her with a bag). Because she is so small, they were having a really hard time. They fianlly got it in, and ran a bunch of tests. But unfortunately, they could not figure out what was going on so they decided to air lift her to DeVos Children's Hospital in Grand Rapids. The inital plan was to take her by North Flight. But the weather was too bad for the chopper to take off from TC. So then it was decided that Grand Rapids's air service would come up and get her. But they could only come as far as Cadillac because of TC's weather. So she would be taken by ambulance to the airport in Cadillac and then airlifted the rest of the way. As they were preparing her for the ambulance ride, we got word that AeroMed (the chopper out of GR) was landing at Munson in 5 minutes. Apparently they decided the weather had cleared enough and the could land and take off safely. One of us could ride with Madelyn, the other would have to drive down. I decided that I wanted Keith to go with her. I am a terrible flyer and did not want to make that trip by myself. So they loaded her up and got her on the chopper. I was able to drive around to the back of the hospital and watch them take off. The worst 5 minutes of my life. Now not only did I worry about my baby, I was worried about her being in a helicopter.
Because they kept her so heavily sedated in the chopper (because of the tube, they have to keep her sedated or she tries to pull it out) DeVos wasn't able to do a very comprehensive assesment upon her arrival. They performed a bunch of tests to make sure she didn't ingest any poisons of any sort. They took blood cultures and urine cultures. She had a CT of her brain done at Munson before she left. She had a chest xray. Everything was coming back normal. They could not find anything wrong.
I went and got Jackson from school. I had called ahead and he was ready to go when I got there. I explained to him in the most simplest terms that Madelyn was sick and that we were going to GR to a hospital so the doctors and nurses there could help her get better. He was very concerned that she was going to have a cut on her belly like daddy and that she had what daddy had. I tried to assure him that was not the case. Mom and Dad arranged for Chloe (our dog) to be kenneled with their dog. So I packed what I thought we would all need for a few days and hit the road with Jackson. Paul and Sandy and our niece Samantha had already headed down to GR. They had been with us, along with my mom and dad, in the ER at Munson. Mom and Dad drove their car down the same time I came down.
Aunt Kari and Troy had been at DeVos with Keith since his arrival with Madelyn (in case you're wondering, the flight takes about 50 minutes). So when we got closer to GR, they met dad and took Jackson to their house in Rockford. Jackson has been having a great time going to the gym, picking out a new bathing suit for swimming tomorrow, he went to Toys R Us, they made a fort. He's keeping busy. He thought it would be too scary to come to the hospital and see his sister. It's too scary for me too. Can I go build a fort instead? And crawl into it for the next few days? This is serious deja vu doing this blog. It's surreal.
So, Madelyn is having a hard time with the sedation. It's a tricky thing. They need to keep her sedated because of the tube, but if she is sedated the whole time, she can't wake up and cough to keep her lungs clear, or communicate what is wrong. And at first, the sedation was being administered PRN which means as needed. So she would sleep for about an hour, the meds would wear off, she would wake up and become agitated, she'd be given another dose and so the cycle would go.
She was taken down for an MRI around 2 in the morning. Again, results were normal. This morning, there was talk of taking the tube out. The respiratory therapist came in to remove it and after doing a suction to make sure that she was clear of any lung fluid, found out that she had very yellow, very thick mucus coming up. Previous suctions had all been clear. So because of the mucus, breathing treatments were ordered. These are rough for Madelyn to go through and rough to watch. Basically, they hook a machine to her breathing tube which pulses air, saline, and medication into her lungs to "stir up" the crud that's in there. Then they are able to suction it out. Because of the tube, Madelyn can't cough. The RT (respiratory therapist) got a lot out and again, very yellow (which indicates an infection) and very, very thick. So the tube would stay in until they got this resolved. They took another chest xray which showed evidence of pneumonia. A culture of the speutum (mucus) was taken, but it will take 3 days for definitive results to come back saying if anything is present. They are able to get a preliminary diagnosis saying that there MAY be an infection present so she was started on a broad spectrum antibiotic. That brings us up to Saturday afternoon. The breathing treatments will be every four hours and last for about 15 minutes. They make Madelyn very agitated. Her heart rate goes through the roof. She tries to cry but can't because of the tube, tries to cough but can't.
Ok, so I really hate to cut this short, because there is a lot more to tell, but I am exhausted and need to get some sleep. I've had abou two hours in the last 38 hours. Keith and I are fortunate enough to have a room to sleep in tonight in the hospital itself. They have 4 rooms up on the 11th floor that they give to patient's families on a "need" basis. Keith and I got one tonight. So he is going to stay with her while I go up and rest, then we'll switch. I will say that Madelyn is resting comfortably now. She is being kept sedated and they are continuing the breathing treatments through the night. Please keep our baby girl in your thoughts and prayers. We are not out of the woods yet, but she is very strong and otherwise healthy so the outlook is good, just uncertain of what is going on right now. My love to you all and I will finish more tomorrow.
on Sunday, 05 October 2014.
Posted in Newest Info
Well, we finally heard from Keith's nurse, Kasha, on Friday. We did receive the blood work back on Friday morning via Keith's patient portal, so we knew that his AST/ALT numbers both went down by 1 point. But down is down so that's good!
Kasha said that there were absolutely no changes detected in the ultrasound when compared to the one they took last fall. Based on that and the fact that the numbers didn't go up, there is no need to do a biopsy at this time! Woo hoo! She did mention that there are areas of Keith's liver that are a bit denser than "normal" but they are of absolutely no concern to Dr. Kwon. I'm assuming that this was the "tissue stiffness" that the tech was recording.
For whatever reason, the virus issue was not part of the blood work results that we received and Keith didn't think to ask Kasha about it. We'll bring it up next time we talk to them. But they are on it, so I'm not very worried about it.
So Keith is to keep getting his blood work once a month, we are scheduled to go back down to Ann Arbor in February, and there were no changes to his meds. We just need to keep doing what we've been doing. One thing Keith is trying to do is increase the amount of magnesium that he gets from his foods. He has been taking a supplement since the transplant and is on a pretty high dose. High doses of magnesium tend to play havoc with one's gastrointestinal system, so we're trying to get it from food as opposed to pills. We met with a dietician the last time we were down there and got a list of foods high in magnesium. Hopefully by the next round of blood work, Keith will be able to knock off at least one of the magnesium pills that he takes.
Thank you all for the prayers and well wishes! They worked! We love you all and are extremely thankful for all of your support!
on Wednesday, 01 October 2014.
Posted in Newest Info
Wow, has it really been a whole year since I've posted an update on here? I know I've been posting things to Facebook, must've skipped this blog! There's way too much to catch you up on since last October so let me just give you the latest.
Keith and I went down for a clinic visit on 9/26. It had been 6 months since his last appointment; he was doing so well! He still goes for blood work once a month locally so they have been monitoring him between visits. We have noticed that his numbers have been rising slightly each month, but we never heard anything from the doctor and we've always been told that no news is good news so we weren't too concerned.
At his clinic visit, his numbers had gone up again. Not horrible, the AST is 45 and the ALT is 62; they should be between 0-35 or so. His total bilirubin is at 1.3 and the direct bilirubin is 0.3. There are 3 different ways they report the bilirubin, direct, total, and one other that I can't remember. Dr. Kwon informed us that the direct bilirubin is the best indicator of liver function and that number is really good. So it's confusing that the AST/ALT would be going higher. Of course it is. Hasn't confusion with this case been present since the beginning?
So you're probably wondering what all this means. Scenario number 1: Keith's auto-immune hepatitis has returned and has begun attacking the new liver. Scenario number 2: Keith has developed CMV, a virus which the donor had been exposed to but which Keith never has. Scenario number 3: some stage of rejection. You can imagine how I melted into a puddle when I heard those words. Isn't that what every transplant patient fears?
So now, what do we do about those scenarios? The good news is, all scenarios are treatable with medication. It just depends on what kind and how much. If it's the hepatitis returning, Keith will probably be taken off one of his immunosuppressants and have it replaced with a different type. If it's the CMV, he will be put on an anti-virus drug. He was on that for a while right after the transplant as a precaution, but they don't really keep you on it unless it proves necessary, i.e. the CMV presents itself. If it's rejection, Keith will be put on oral steriods like prednisone. If it's a more advanced case of rejection, he will need to go to the infusion clinic at U of M and receive the steroids via IV for 3 days in a row, about an hour or so per dose. Then maintenance with the oral meds.
So back to my meltdown at the appointment. Keith could tell that I was starting to lose it (and by lose it I mean that I was beginning to cry, please don't think I was all hysterical and out of my mind). He asked Dr. Kwon to remind me that this is to be expected. We knew the hepatitis would eventually come back. It's not a matter of "if", it's a matter of "when". She reassured me that they are watching Keith very closely and will catch whatever is going on very early. She emphatically stated that Keith will NEVER be where he was last year. It will never get to that point again. This is just part of the process and the bumps in the road that they told us to expect. Still, Keith has been doing so well, that it was just a shock to me to hear. That's really one of my big fears. That all of a sudden Keith will be horribly sick again and we'll get thrown into crisis mode. I'm not sure I could handle that again.
So where do we stand now? Well, the doctor wanted Keith to have an ultrasound that day to get any information that they can. I was able to watch. It was interesting even though I had no idea what I was looking at. It's easy to see a baby in an ultrasound. Not so much a liver. One thing that has me quite freaked out is that during the ultrasound, the tech was taking a bunch of measurements of stuff I couldn't see (I could tell when she was measuring the diameter of veins and artieries, this just looked like random grey areas of nothing). She left the room to call the doctor and make sure they had what they needed (again, weird, a tech has never done this before with all of the ultrasounds that Keith has had so it makes you wonder). She left her last screen shot up and the measurements she had been taking were labeled "Tissue Stiffness". To me, that sounds like cirrhosis which is not good. But techs aren't legally able to tell you anything and of course we need to wait for a radiologist to read and interpret the ultrasound and then Dr. Kwon to read that report. This just adds to my anxiety over waiting for results.
Anyway, he did more blood work again this past Monday. Depending on those findings, he MAY need to have another biopsy. That would be another trip to Ann Arbor. We still don't have any results from either of those two tests. I am about out of my mind from waiting. I think I have checked my email about 9,000 times a day. (I get notified when they post results to Keith's patient portal.) Plus, I've checked the portal daily to make sure that they didn't somehow post and I wasn't notified.
So it's wait. Again. Hurry up and get a bunch of tests and wait. It's hard. If we haven't heard anything by tomorrow afternoon, Keith is going to call. Please keep us in your prayers and send positive vibes our way! We love you all and thank you so much for all of your support!
on Tuesday, 08 October 2013.
Posted in Newest Info
So last Friday was Keith's first clinic appointment with his liver team. He has been seeing the surgical team for previous appointments, but all surgical issues have resolved so he got to move to the next level. Overall it was a good appointment, his doctor was impressed by how good he looked (she hasn't seen him since before the surgery) and he doesn't have to go back to the clinic for 2 months. However, for the past couple of months his liver levels have been yo-yoing and talk of biopsy has been tossed around. But the numbers always came back down so the biopsy was determined to be unnecessary. But his levels were the highest they have been post transplant this past Friday so he needed to have the biopsy. He also needed to have an ultrasound to make sure that blood flow was good in and out of the liver. Thankfully, we were able to have the ultrasound on Friday when we were there. The biopsy was another story. We needed to come back on Monday for that. The procedure needs to be completed and to the pathology lab BEFORE 11:00 so that his doctor could have the results by 6:00 that day. What to do? Come home for a day and turn around to go back down on Sunday? Stay downstate and shuffle the kids around trying to figure out how to get Jackson to and from school? We decided to come home and Keith's dad would go back down with him Sunday.
Let me back up a bit. There were about 4 different possibilities that could be causing Keith's erratic liver numbers. The best case scenario would be that there really isn't a good explanation; that this was just the way Keith's body was reacting to the transplant and all of the meds and trying to find its equilibrium. Option 2 was that his auto-immune hepatitis was back. This is always a possibility. It's in his system. We can't get rid of it. It's really only a matter of time. But treatable. They would just give him higher doses of oral steroids. Option 3: More background info, Keith's donor was CMV positive. It's a common virus that the majority of the population has. It presents like a cold or the flu. However, Keith was negative so he is extremely high risk to develop it since it's in the donor liver. No problem for someone who isn't immuno-compromised. But if Keith develops it, he can't fight it on his own. But again, treatable. He would just be given an oral anti-viral med. Option 4: the scariest option. Rejection. Sounds horrible, right? Of course it does. HOWEVER, even though it is called REJECTION, you're not actually LOSING the liver. Remember, the liver is foreign. His body is ALWAYS trying to get rid of it. He's always in some stage of rejection. That's what the suppressant meds are for. Making sure his body doesn't reject it. But surprisingly, even rejection is treatable. He would need to stay in Ann Arbor through Thursday and they would give him what they call pulse steroids. Basically it's high doses of steroids given by IV once a day for 3 days. After that, you need to wait and see how that worked to see if the oral steroids need to be increased. Scary options. It's our first bump in the road. We're so far from our doctors. So many things to try and work through. It's not as simple as "come back Monday and we'll do the biopsy".
So as it turns out, Keith's mom went down with him. His dad hadn't been feeling well the past few days and didn't want it to turn into anything more severe when he was downstate and expose Keith. They left about noon on Sunday and it took them FOREVER to get there. Torrential downpours and heavy traffic really slowed them down. But thankfully, they made it safe and sound. Keith arrived Monday morning for the 8:30am procedure. The procedure itself is pretty quick, the recovery was to last a couple of hours to make sure there wasn't any bleeding. HOWEVER, because of the Jones family curse we have to do everything more than once. Keith inherited the curse when he married me! The first attempt at the biopsy did not produce enough of a sample. The second attempt produced NOTHING. The third time was the charm. They moved the incision site a bit, but at least they got it. Keith said it hurt. It hurt a lot. If it hurt him, I would have been screaming and crying. He has a very high tolerance for pain. He thinks they were rubbing against a rib the first two times. Ouch.
Because they had to do 3 passes, they upped his recovery time to 4 hours. Long time to lay there with nothing to do. Then he still had to wait for the results to see if they had to stay or could come home. I'm thankful that I had to work and had the kids to distract me that day. I would have been pacing the halls otherwise. Keith and his mom went to go see Gravity to pass the time.
At about 5:40pm his nurse finally called with the results. It was GOOD NEWS!!! It was the first option. Just the way his body is responding to everything. No sign of infection, virus, hepatitis or rejection. NO REJECTION!!! Keith could come home. They hopped in the car and headed north. It's maybe a tad frustrating to me that there's no real reason for the erratic numbers. But I'm trying to focus on the positive. No rejection, no infection, no hepatitis, nothing! He will go to Munson this Thursday for more bloodwork to see how everything is going. Hopefully we're trending down again!
on Monday, 09 September 2013.
Posted in Newest Info
Today was another clinic visit for Keith. It went very well! It has been about a month since the last visit and he doesn't need to go back for another month! At that time he will transition to the liver doctors. He has been seeing the surgeons still, but all of his surgical issues have been resolved. His incision has healed beautifully and he is responding well to the meds. His liver levels were slightly elevated today. Nothing over 100 so that's great. Just a little elevated. He will go for another blood draw on Thursday like normal and see what those numbers look like. Even though it freaks me out a little when the numbers go up like that (it always makes me remember when they kept skyrocketing out of control) this is to be expected. There is something that can be done. It doesn't spell certain doom. So anyway, if his numbers are good on Thursday, we can go down to once a week draws! That will be wonderful. I don't mean to sound like I'm complaining, but it's been a bit of a struggle to try and juggle our schedules on the days Keith has blood draws. He has a very specific time frame to get his blood work done on those days, we have to get Jackson to school and I have to get to work. Sometimes having only one car is a pain.
One thing we did talk about today with the nurse was one of the side effects of his main immune suppressant meds. Keith has been noticing that it seems as if his hair is falling out and thinning more on the top of his head. It was happening a little before the transplant and we just attributed that to all of the stress he was under from work. But lately it seems to be getting worse. It's not any huge deal, just something we noticed. He mentioned it to the pharmacy tech today and she said it's definitely a side effect of the Tacro. If it's bothersome to Keith he can get some Rogaine, but it's not that big of a deal to us. Just an interesting quirk of the meds and it's nice to know there is a cause!
Another thing Keith has noticed lately is that he is having a hard time falling asleep at night. He used to fall asleep before his head hit the pillow, but no so much lately. None of the meds really cause this. The nurse attributed it to the fact that he probably just has a lot on his mind. She did mention that he can take some Benadryl to relax him and make him sleepy. I thought maybe that Nyquil that specifically for sleeping would be better. Seems that the Benadryl has a lot of stuff in it treating symptoms he doesn't have, but she thinks the Benadryl would be better. We'll try that out and see if it helps.
That's pretty much all that happened today. Good report overall! They did mention that they see Keith was less than they see most of their other transplant patients. He is doing really well. I hadn't been back to U of M since his very first clinic visit. It was strange to weave around the parking structure looking for a parking place again. Strange to see all of the same landmarks that I used to look for when I would drive there myself. It was nice to know that at the end of the day we got to come home.
All our love to you all!
on Monday, 12 August 2013.
Posted in Newest Info
Thank you to all who attended our benefit luncheon this past Saturday! It was a wonderful day full of family and friends and lots of love! Thank you also to all of our family who worked so hard organizing everything and putting on such a wonderful benefit!
Keith had another blood draw today. We didn't hear yet from his clinic nurse so we are not sure of the numbers today. They say no news is good news, but also, it sometimes takes a day for them to get the numbers from our local lab. So I guess we'll see what tomorrow brings.
Otherwise, Keith continues to do well. Stronger every day and his color is much better. I can't even detect lingering signs of jaundice at this point. But I'm somewhat use to it I guess so I may not be the best judge!
More updates as they come. Love to you all.
on Wednesday, 07 August 2013.
Posted in Newest Info
Oh my, what a long time it has been since I have posted to you! Keith has been doing well. He continued to go to Ann Arbor every 2 weeks for his clinic visits and his numbers and levels had always been really good. He had a visit this past Monday and was told that his liver numbers were a bit elevated and had been on the increase the past few blood draws. The doctor did not seem overly concerned, but asked how Keith has been feeling lately. He has had no clinical symptoms (flu like symptoms or a cold, achy-ness, fever etc.) and has been feeling fine. If he had symptoms mentioned above the doctor would have assumed Keith had some sort of virus and would have let it run its course. In the absence of said symptoms, the doctor wants to make sure that the autoimmune hepatitis isn't making itself known again and tenatively scheduled Keith for a liver biopsy this Friday. As you can imagine, this was somewhat hard for us to hear. We KNOW there will be bumps in the road. We have been told to EXPECT this. But he has been doing so well that it was a little bit of a shock to hear. They did an ultrasound on Monday while Keith was there just to make sure that all of the vessels and veins and arteries are working properly in the liver. The preliminary reports of that test look good.
So today Keith's dad took him to Munson for another blood draw. Based on these numbers we would find out whether or not Keith and I need to head down to Ann Arbor tomorrow after I get out of work. Keith's nurse Kasha called and let me know that the numbers are still elevated, but they did come down. Based on that fact, the doctor wants to hold off on the biopsy for now and have Keith do another blood draw on Monday. (He gets blood drawn 2 times a week either here or in Ann Arbor depending on whether or not he is down there for clinic.) This is such wonderful news! We'll see what Monday brings and Kasha said to call them immediately if Keith starts having any symptoms, but for now we are good and in a holding pattern.
We have had such incredible support since we have been home. Keith's parents have been camped out in our yard (in their camper in our driveway, a pretty fancy setup!) and have been taking Keith to his blood draws, watching the kids while I go to work and helping out around the house as we get back into the swing of things. His dad has been taking Keith to his clinic visits and the past couple of times they took Jackson so he could go swimming at the hotel. Meals have been brought to us and we are so very grateful for all of the support we are receiving from everyone! We continue to be humbled by the actions of our family, friends and community at large.
We have another benefit this Saturday. It will be at the VFW hall on Veterans Drive from 11-2. Our community has come together and a ton of businesses in our area have donated items for the silent auction. We have over 85 items so far!
We had a visit today from a reporter at the Record Eagle. She wanted to interview Keith as part of a human interest story to go along with the piece they are doing about the benefit luncheon. We talked for over two hours and gave her the whole story starting back when Keith was first diagnosed with ulcerative colitis. She needs to take all of our information and condense it down into a 500 word article. I do not envy her in that task! It should be printed in Friday's paper. But she did say it was possible that it wouldn't be in until Saturday. A photographer came out to take pictures of Keith as well. Excited to see how it all turns out!
I'm sure there is a TON I am forgetting since it's been so long since I've written. I will try to be better about keeping in touch! Please feel free to leave a comment if you have a question for us! It comes to me before it goes out to the site, so if you wish to keep it private, just let me know and I won't make it public!
All our love to all of you!
on Thursday, 18 July 2013.
Posted in Newest Info
Keith and I would like to thank Jonathan and Melissa Basler for all of their hard work putting together such a wonderful benefit dinner for us last night. It was so great to see so many friends and family come together to support our family. It was very overwhelming and so very much appreciated! Thank you to all who attended or helped out in any way last night!
Today is our baby girl's 2nd birthday. Can't believe she is 2 already! Time has certainly flown by fast and even more so when we missed a whole month of her life! We are very grateful that we all could be here to celebrate with her!
on Tuesday, 09 July 2013.
Posted in Newest Info
Wow how time flies! I can't believe it's been a week since I last updated the site. A lot has happened in that time! We were able to enjoy quite a few days at the Cherry Festival. It was good to be out and about. We took Jackson to the Midway on the 4th and he had a ton of fun! Unfortunately, Keith couldn't stay long since his wound began to bleed and bled through his shirt. His parents took him backstage so that he could clean up and get bandaged up. I proved what a great bumper car driver I am and Jackson and I had a blast!
We went to the fireworks at Frankfort for the 4th. They were awesome as usual! Keith got a little cold sitting on the beach. It was much colder than we thought it would be. We got him wrapped up in blankets and he was good. We took a chair for him to sit in as it would be too hard for him to get down on the sand. As is tradition, we walked a few blocks back into Frankfort to get ice cream at The Cool Spot. Keith walked the whole way and said it felt good to stretch after sitting on the beach for so long.
The next day was a rehearsal with my former choir to honor my high school choir director, Russ Larimer. He retired this year and all of his former students were invited to get together to sing under his direction again. It was so great to see so many of my classmates! We spent the evening reminiscing, singing and catching up around a bonfire at Mr. Larimer's house. What wonderful memories we shared and created some new ones. Saturday was the performance at First Congregational Church. What a wonderful time that was! To sing in front of others again was incredible and made me realize how much I have missed it.
Sunday Keith and his dad headed back to Ann Arbor for Keith's appointment on Monday. He had a wonderful follow up visit! They told him that he is one of the best post op transplant patients they have ever seen. His levels are continuing to improve, they reduced his prednisone, took him off of the water pill and told him he didn't have to wear his compression stockings anymore. They also moved him to clinic visits every two weeks! He still has to get blood work done up here twice a week on off clinic weeks, but that is obviously so much easier! So as long as his blood work is good he won't have to go back to Ann Arbor until the 22nd!
We continue to be humbled and overwhelmed by everyone's generosity. We have received more help and support than we ever could have asked for. Thank you all so much. We love all of you and could not have gotten through this time without each and every one of you. All our love always.
on Wednesday, 03 July 2013.
Posted in Newest Info
It has been so good to be home! It's strange as we fall into our new routines. On top of all of the normal day to day stuff I now get to play nurse; making sure Keith takes his meds 3 times a day and taking his vitals twice a day, putting on and taking off his compression stockings which holy cow, are a pain! I've got it down now, but still, not so much fun.
Being the die hard Cherry Fest peeps that we are, we ventured out Saturday night to see Styx. Keith did really well; wore his mask as we were walking backstage and then we hung out in the catering tent. It was good to get out and do something normal.
Mom and I got to have a girls' night Sunday night and went down to see Montgomery Gentry. What a great show! It was nice not to have to keep an eye on the kids and cart Madelyn around the whole time.
Last night the whole fam ventured back down to see Foreigner. Keith hung out in the catering tent again and Jackson hung out with his friend Kadin backstage. Madelyn hung out with me and we jammed out next to the stage. As we were getting ready to leave, Keith noticed some wetness on his shirt and went in the production office to check it out. Part of the incision that had started scabbing over had caught on his shirt and started bleeding. It frightened me since the blood was really dark; not the bright red that you usually have if you cut yourself. We pulled over on the way home to make sure that it wasn't bleeding a lot. I figured we were closer to the hospital at that point than if we went all the way home so if it was bleeding a lot we might as well head to the ER. But the bleeding at that point was very faint so we continued home. Keith kept a fair amount of pressure on it and had it stopped by the time he went to bed. It continues to bleed around the scab, but as long as there is pressure on it, it's a very slow bleed. We called his nurse this morning and let her know what was going on. She wasn't concerned about it. It's a good thing that we can get it to stop.
Oh yeah, Keith went in for blood work on Monday (here at Munson). Kasha (our U of M nurse) let him know that his magnesium fell a bit again so to look up high magnesium foods and to eat those until his supplements come. One food high in that is dark chocolate. Keith was all over that! So I got him a huge bar of it and did he share? No, he did not. Bummer.
Keith's got blood work at Munson again tomorrow so we'll see. His numbers are continuing to improve (other than magnesium, of course). We are well on our way to recovery. Please keep the prayers coming that it continues to go smoothly!
I also wanted to thank everyone who has so generously donated to our page. Like I've said before, it is very humbling and overwhelming. We did meet our goal of $2500 to receive the match and this just blows me away. I wanted to mention that we did meet the goal, since the match money isn't going to go through the site. We love you all and are so very happy to be back home amongst our friends and family!
on Saturday, 29 June 2013.
Posted in Newest Info
Sorry that I didn't post yesterday. I'll catch you up on what happened!
Keith had his first clinic visit yesterday. He had to have his blood drawn at 9:00am and his appointment was at 10:00. They told us to bring water and snacks as the appointment would likely last several hours. So we were a bit surprised when they called us back at 9:10! We met with the pharmacist who went over Keith's meds with us to make sure that we understood what they were, how to take them and possible side effects. The surgeon came in and said that Keith looked remarkably well and the incision was healing nicely. We also met with our post transplant nurse who will follow Keith forever with his clinic visits. She went over dos and don'ts with us and answered any questions that we had. After waiting for the results from the blood work, we found out that his numbers continue to improve. His ALT is down to 42 and his AST is 93. Still a little high, but WAY better than in the 5700s and 4400s! His bilirubin is down to 3.9. His kidney function continues to improve but is still a little off. Time will fix this along with drinking plenty of fluid.
They also gave us some more information on the whole eating out thing and when to wear his mask. This eased my mind tremendously. The only huge lifestyle change is that Keith can NEVER again have alcohol (not that he drank all that much). This is a small price to pay for the chance of a healthy life. The donor family gave us a wonderful gift; obviously we want to take care of it!
So after all that good news, they let us go! We were on the road by 11:30 and don't have to be back until Monday, July 8th. He will have to get blood work done here this Monday and Wednesday and based on those numbers they could ask us to come down earlier, but if not, we get the whole week to be home! As we were driving home, Kasha (the nurse) called to let us know that his suppressant levels were where they were supposed to be so we don't need to adjust that med at all. (Those results always take longer so they don't make you wait around for those.) His hemoglobin and magnesium are a little low, so they are going to add an iron supplement and a magnesium pill to his other meds. Those should be delivered early this week. In the meantime, he is supposed to eat peanut butter to get his magnesium levels up.
It was so great to drive yesterday knowing that it would result in us coming home and seeing the kids! From Clare to our house was the longest drive in the world! Madelyn and Jackson were so happy to see us and Madelyn hasn't let me leave her sight ever since. I can't go anywhere without taking her with me! They both have gotten so big in the past month and Madelyn has turned into quite the little chatterbox!
It was beyond wonderful to sleep in my own bed last night! Keith is still more comfortable on the couch or in the recliner and he said that all things considered, he got the best sleep last night that he's had in ages. I'm sure it will just keep getting better as the days go by.
This morning I made pancakes with the kids. It was so great to do something so normal! Today the sun is shining and it is a beautiful day! We're thinking about going down to the Cherry Festival tonight to catch the Styx concert and see the night time air show. We'll see how Keith feels. The good thing is I happen to know a guy who can get us parked backstage so that Keith doesn't have to walk very far. :) Nice to have those connections!
Thank you for the continued prayers and support! Posts may come a little less frequently now that we are home, but I will still continue to update as we learn more. All my love to you!
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on Friday, 28 June 2013.
Posted in Newest Info
Today was a bittersweet day. We left Adam and Cindy's this afternoon and headed to our hotel in Ann Arbor. It's nice knowing that we are one step closer to being home, but Adam and Cindy's has been my home for the past 4 weeks and it was harder than I thought it would be to say goodbye. But we set off for Ann Arbor once again to continue on our journey.
HOLY TORRENTIAL DOWNPOUR, BATMAN!!! We ran into a monsoon in Ann Arbor! The visibility was non-existent, the roads had about an inch of water on them and the parking lot at our hotel was a lake. Because Keith has those compression stockings on and they cover his feet, not to mention he walks a little slower these days and probably would have drowned in the rain, we waited in our car for about an hour for the rain to let up enough for him to walk to our room. It's one of those hotels that you walk right to your room from the outside; it creeps me out. So it's not like there was some nice awning that I could park under to get him into the hotel. So we're holed up here in our hotel for the night hoping that we can get a good night's sleep.
We made our first venture into a restaurant tonight. Keith liked it because it was the first normal thing he's done in a month. For me, it was anything but normal. I am totally freaked out now about the things that used to be taken for granted. Is the food cooked right? Does this restaurant use city water? Are there any sickies around us? Ugh, the list of my worries is endless. I'm sure it drives Keith nuts. I could barely get through the meal without breaking down into a blob of overwhelming tears.
Obviously we are hoping for nothing but good news tomorrow so that we can head home! Just think, this time tomorrow we could be tucking our babies into bed! Ahh, the normalcy of that. I can't wait...
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on Wednesday, 26 June 2013.
Posted in Newest Info
Today was a day to catch up on sleep! Keith and I took naps today (although, I must admit, I took more and they were longer!). Last night was better as far as sleeping goes, but every time Keith moves I wake up to make sure nothing is wrong.
We went for a walk outside today. It was another beautiful day. Keith did really well. The sidewalks were a bit uneven as they tend to be, so I was a little nervous, but we took it slow and it was nice to enjoy the blue sky and sunshine! It's hard to believe we've missed a whole month of "summer". We'll have to make up for that when we get home!
Keith's big thing on the agenda today: a haircut. We've found a place down here that's open until 8:00 that takes walk-ins only so we're going to go check that out in a bit. Keith was way overdue BEFORE he was transferred down here, so he's very excited to get this done tonight!
Tonight will be our last night at Adam and Cindy's. We've booked a hotel closer to the hospital for tomorrow night so that we don't have to fight the rush hour traffic down here the day of the appointment. It will be so very sad to say goodbye to Adam and Cindy. This has been my home for the past almost 4 weeks and they have been so very generous and supportive. Although it will be very exciting to head home in a couple of days, it will be very weird as well.
For the first time since before his surgery, Keith got to talk to Jackson last night. He had been holding off for a while for many reasons; his voice was all scratchy from the ventilator tube, he's been pretty out of it for a while, etc. I think the biggest reason was that it was just going to be really hard. Jackson has been missing us and wanting to know when we would be home. Now that we have more of a date in mind we were prepared if that question came up. Jackson had a lot to update his daddy about. All of the fun stuff he's been doing, games he's been playing, what Madelyn (he calls her "Madion" since he can't say his "L" sounds) has been up to, etc, etc. It was a great conversation that lasted almost 45 minutes! Jackson didn't want to say goodbye, but we let him know we would talk to him again soon.
For now, we've got to get ready and head to the barber! All my love!
on Tuesday, 25 June 2013.
Posted in Newest Info
So, time to play a little catch up here...
Keith did get out of the hospital yesterday! He was basically ready from a discharge standpoint at 10:00am. But we had to wait for the meds to be delivered (the transplant meds are housed off site) and then the nurse had to go through them all to make sure that they were correct and then do her discharge stuff. So by the time all was said and done we didn't leave the hospital until about 5:30! They don't have volunteers to wheel you to the front entrance like they do at Munson. What U of M does is bring you a wheelchair and I had to wheel Keith to the car myself! I must say, I am not a very good wheelchair driver. But we made it to our car safe and sound and headed on our way!
After a crazy drive through Ann Arbor, we stopped at Meijer to get a few things. Not to mention I wanted to kill some time before getting out on the freeway with all of the crazies headed for home in rush hour traffic.
We got to Adam and Cindy's and they had made Keith a very yummy lasagne for dinner! It was Keith's first real meal in over 3 weeks. It was delicious! And there were brownies for dessert!
Last night was a little rough for sleeping. Keith can't really lay flat because it's so hard to get up and down. We decided the best place to sleep last night was the couch. (It is actually very comfortable!) But we set him up so that to get off the couch he would have to roll to his right side. This was the wrong answer. He has a suture from where his drain was on the right side which neither one of us thought of last night. Every time he moved it would put pressure on his wounds and make them drain a bit. But he did get more sleep here than he did at the hospital and said he felt pretty good when he woke up.
Even though we are just sitting around like we did at the hospital, it's a totally different feeling to be in a house rather than stuck in a loud hospital room. We've got Keith all set up on the couch with his feet propped up, his compression stockings on and some fresh dressings on his leaky parts of the incision. The leaking has practically stopped now since his movement has decreased, but lack of movement makes his legs get stiff. So he's been trying to do some laps around Adam and Cindy's house.
He's got his first follow up visit this Friday at 10:00am. We need to be there about an hour beforehand for blood work. We have to be very particular about when they draw his blood to check that his med levels are right. It's a whole lengthy process. The meds are a whole process too! I filled his pill box last night and it took about a half hour to get all the different days and times filled! It will get quicker as I get used to doing it. Keith counted his pills this morning and he took 19 pills just in his morning dose! All in all he takes about 30 pills a day. I told him his pill box rivals most elderly patients routines! Not very funny, but true.
Thank you all for your continued support! All my love.
on Monday, 24 June 2013.
Posted in Newest Info
KEITH GETS TO LEAVE TODAY!!!! KEITH GETS TO LEAVE TODAY!!!!
(I'm a little excited, can you tell?)
I'm back at the hospital with Keith and he's had quite the busy morning so far! He's talked to his various teams and they have all given him clearance to get discharged. Right now we are just waiting for the pharmacy to bring up his meds. Keith got his compression stockings today and those are SO much better than the wraps. They go from his toes to his thighs but the toes are open. They are very stylish I must say. ;)
We're getting ready to go for another walk around the floor. Then one last lunch here at the hospital and then sometime this afternoon it's off to Adam and Cindy's! We have our first clinic appointment this Friday at 10:00 and if everything is good to go, WE WILL HEAD HOME!!!! :) In clinic, Keith will meet with various members of his various teams. He'll have blood drawn to make sure his levels with both the liver and his meds are doing well. We'll meet with a surgeon to make sure there are no surgical concerns. It will be a long appointment. They suggest bringing water and snacks. Also an overnight bag in case he needs to be re-admitted for any reason. Our nurse yesterday said that a lot of the re-admits they see are because people forget to take it easy once they get home and blow open their wounds and what not. We will always have to be on the lookout for signs of rejection and infection, and we have been told over and over that there will be setbacks along the way. It's just all part of the lifelong process we are now in.
Overall, Keith is doing remarkably well. Our nurse told us yesterday that when they talk about Keith in shift change, they describe him as "not your typical liver transplant patient".
It will be awesome to be out of here, but a little scary too. Kinda like when you leave the hospital with your first baby that first time. You're so used to having professional help at your fingertips when you need it. But we'll do great. We've got the meds down pat. We know what to be on the lookout for. We know who to call if we have any questions/concerns.
I cannot say enough wonderful things about this hospital. EVERYONE has been so caring and helpful. They explained everything to us over and over again so that we know it inside and out. I feel that they are a part of our extended family. I'm sure there will be tears of not only happiness but also overwhelming gratitude when we leave (on my end anyway 'cause you know, I cry at the drop of a hat).
We're off for our walk now!
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on Sunday, 23 June 2013.
Posted in Newest Info
Keith continued to do well yesterday. His kidney function has improved enough that they can start him back up again on the diuretic. They gave it to him through his IV yesterday so the results would be quicker. The doctor also came in and wrapped his legs since he said trying to get compression stockings on the weekend was near impossible. Walking is a bit of a challenge from all of the swelling and now the wrapped legs. But we made sure to get up and walk a bit yesterday. At first they were going to let us go outside, but then thought better of it once they gave him the diuretic. It's best to stay close by the bathroom after that!
Keith was able to get some really good sleep last night! He also lost 6 lbs of water since yesterday morning. They are going to push more diuretic today and hopefully get more water out.
Not a whole lot going on now. Just waiting for the water to go down and hoping that we're still on track for getting released tomorrow. It will be so great not to have to make the drive to and from the hospital everyday. Not to mention have Keith out of there as well! :) We'll stay in the area for about another week since he'll have his first follow up visit this Friday. Then it's off to our house that we haven't seen for 4 weeks and our beautiful babies! I was fortunate enough to be able to see them a couple of times, but Keith hasn't seen them since June 1st, right before he was transported down here. :(
All my love to you all. Gotta finish getting ready so I can head off to the hospital!
on Saturday, 22 June 2013.
Posted in Newest Info
Good morning! Yesterday was a pretty good day. Keith's numbers continue to improve. They removed his drain so now he just has one small IV in that they really aren't even using. His swelling isn't really getting any better so they are going to get some compression stockings for his legs. Amit (part of the surgical team) told him to keep his legs elevated above his heart and to drink, drink, drink plenty of water. They had started him on a diuretic but then his kidney numbers went the wrong way so they didn't do the diuretic yesterday. Keith could tell a difference. The swelling is pretty severe from the waist down, but it is to be expected. Especially in someone that had such a sick liver before the transplant.
I just spoke with Keith this morning and he had a pretty rough night again. He fell asleep in a bad position and was then horribly uncomfortable. The swelling is making it hard for him to sleep as well. They gave him some Morphine for the discomfort and that is helping a lot. He's not really in pain, he's taking it more now to help him relax a bit. He also got to take a shower this morning!!! He said that helped a ton! They are going to increase the dose of the diuretic now that the kidney numbers have started coming back down. His hemoglobin fell a bit so they are going to give him another blood transfusion today. They said it will just help him to feel a bit better. Sometimes when that number goes down it is an indicator that there is some bleeding somewhere, but Keith said that the doctors aren't concerned about that at all. All just normal stuff that can happen after surgery. Overall he is doing really well and all of his other numbers are continuing to head in the right direction. They are still talking about releasing him on Monday which just blows my mind. He will have spent more time in the hospital pre-transplant while they tried to figure out what was going on than he will post-transplant. Crazy how medicine and the body work.
Nate and Heather Sullivan came by to see Keith last night. It was so wonderful to sit around and talk and have conversations that didn't revolve around liver numbers, bilirubin, creatinine levels, drugs, incisions, etc, etc. Just four people talking about old times. Great therapy!
One major thing we learned yesterday is that Keith will never again be able to drink water from a well. Never. Ever. This presents somewhat of a scary and overwhelming obstacle since practically EVERYONE we know has well water including us. I still have to check with Amit and see if we can cook with it, but he definitely can't drink it. Can he shower in it? Brush his teeth with it? If we got a home filtration system, would that do the trick? The problem is the parasites that naturally are found in well water. For the average person not on immunosuppressants, our system naturally fights these off. Not so much with Keith. It's weird, I can handle all of the changes about having to take all of the pills, changing our diet, making sure the kids and visitors are sanitized from head to toe; but this water thing is putting me over the edge. It's the proverbial straw. I think it's because it's such a basic thing that we never think about and take for granted. I mean it's WATER. It's such an automatic thing to go over and turn on the faucet and do what you've gotta do. I know it will all work out, but honestly, I'm freaking out here just a bit.
Hopefully I can write more later. We'll see how the day goes. By the time I get to the hospital I don't feel like leaving so that I can write, and then when I get back to Adam and Cindy's I'm so exhausted that I don't feel that I can form a coherent thought. Keith had me bring his laptop to him yesterday though so I guess I can use that to keep the updates coming!
All my love!
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on Thursday, 20 June 2013.
Posted in Newest Info
Today was another day full of steps in the right direction. Keith is getting stronger every day and the doctors continue to be impressed by his recovery. He seemed like perhaps he took a step back today but we think it was just because he was so tired. He couldn't walk as much as he did yesterday and seemed to be taking shallower breaths. He took some morphine after our afternoon walk and was able to sleep for about 3 hours. It's nearly impossible to get any sleep in the hospital so I think the 3 weeks here is just wearing him down.
He said he felt much better after his nap and ordered some dinner right before I left. His docs came in and said that he'll get his drain out tomorrow. He's not hooked to anything right now, just has an IV line in in case they need it.
His legs and belly are still very swollen, but they started him on a diuretic today which will help get the fluid out of his body. They say it can take several weeks for the swelling to go down.
The incision is healing very nicely. They just used the surgical glue so he doesn't need to get staples or sutures removed.
They are saying that he will probably be discharged on Monday. Tomorrow is a little too soon and it's too hard to organize on the weekend since we'll need to see the pharmacist again, meet with a dietician and the various other things that need to happen. Then he'll be back in the clinic next Friday for the start of his weekly visits.
He is going to take some Ambien tonight to help him sleep. Hopefully tomorrow will be that much better after a good night's sleep!
On a very personal note, I know that many of you have donated to the website that has been set up for our family. I am very overwhelmed and humbled by the outpouring of support in this way. Saying "thank you" doesn't seem like it will ever be enough. It means so much to us and I want you to know how much we truly appreciate it. Everyone has been so supportive with your thoughts, prayers, watching our kids, mowing our lawn and the comments on the blog. We love you all so much and can't wait to be home among our family.
on Wednesday, 19 June 2013.
Posted in Newest Info
Sorry for the late post, but Keith was awake all day today and I wanted to spend that time with him instead of heading off to the waiting room to use the computer!
Today was a great day! Keith got his NG tube out last night and was able to go on a clear liquid diet. So basically broths, water, coffee (but no cream, sugar is ok) and Jello. He said Jello never tasted so good! He did really well with all of it. No nausea or vomiting. They said if he continues to do well with it tonight they may move him to soft foods tomorrow.
The pharmacist came in today to go over all of Keith's meds with us; doses, time to take them, what they are, what they are for, side effects, etc. The list is extensive, I think he's going to be on 14-15 different meds, but most are taken twice a day and multiple pills make up one dose. But she gave us a schedule and I feel that we have a pretty good handle on it. The good thing is, U of M will keep his prescriptions on file so whenever we need a refill, we just call them and they FedEx it to us. No need to drive to Walgreens and make sure that they have the meds and that it comes from the same manufacturer. So that will be super awesome.
They did mention that Keith MAY be able to be discharged in the next few days. No set date yet. He did meet with the discharge coordinator so at least it's on their radar.
His coloring is much better today. I had gotten used to seeing him yellow for so long that this new color he had after surgery was very strange to me. He was dark. Almost like he'd gone to the Caribbean or something. They said that is from the bilirubin staining the skin. But today, it's much better.
His mental state is getting better everyday. The sedation meds are finally starting to completely clear out of his system I think.
Overall, he's doing remarkably well. Hard to think that just a week ago was our transplant class and that he had only been on the waiting list for one day. Now here we are post transplant and talking about being discharged. Totally surreal.
Thank you all for your continued support. We love and miss you all and can't wait for the day when we can finally come home!
on Tuesday, 18 June 2013.
Posted in Newest Info
Whew! Lots to catch you up on! This morning they removed all of Keith's tubes except for a couple of IV sites. One main one and one for backup. They took him off the oxygen but left the NG tube for now. He is desperate to get that removed, but it's the surgeon's call and they haven't done afternoon rounds yet. He is up and walking again today. They said not to leave the floor. He was hoping to go back outside, but I get the feeling that that was an "oopsie" yesterday!
The good news keeps on coming; they just moved him off of the ICU to the floor. So he's back in a regular room! Only bummer is that now he has a roommate, the first time since being admitted here. Hopefully his roommate isn't too much of a problem. He's had bad luck with that in the past!
Before they let him go home (when that will be we don't know yet) he needs to know all of his meds and what they are for, how to take them and possible side effects. So he'll have a test on that so they can see where he is.
His confusion is getting better all the time. He still says some goofy things from time to time, but he'll come around.
As much as I'm looking forward to getting him home I must admit I am a little terrified about all of the changes. The meds alone are going to be overwhelming to keep straight. Plus there's making sure he doesn't come into contact with anyone who is sick and keeping an eye on his blood pressure and weight to make sure he's not collecting fluid or having a bleed somewhere. Not to mention the fact that for about the first 6 weeks he will have at least one visit per week here in Ann Arbor. Then it will taper to one every 2 weeks, once a month and so on until he's only coming down here about once a year. But bloodwork will continue at home forever. I am so thankful for our wonderful support team and I know we will get through this, but right now it's a bit much to think about. To quote Scarlett O'Hara, "I won't think about that today. I'll think about that tomorrow. If I think about that today, I'll go crazy!" True dat.
All my love to you all. Keep the prayers coming. They are working like crazy! Thank you so much!
I called Keith's nurse earlier to see how he had been doing tonight (I headed back to Adam and Cindy's around 7:00). She said he was doing great but tired from all of the walking he did today. He was able to get outside and enjoy some sunshine and fresh air earlier! She was getting him situated in bed. He has been at no pain all day today so hasn't been taking any pain meds. He was wondering if he would be able to sleep (he has a hard time finding a comfortable position). She let him know that they would prop him up and if he hadn't fallen asleep in a half hour or so, they would give him some pain meds. He was agreeable to that!
He has been a bit confused still. For some reason, he thinks that if he eats ice chips it will affect the NG tube that he has and he won't be able to get better and go home. Same thing for resting. He thinks that if he sleeps, the nurses will think he's not getting better and not let him leave. I'm afraid that he's telling everyone that he's in no pain so that they'll let him go home. I expressed this concern to the nurse tonight and she said that she'll keep an eye on it.
One of the surgeons came in while I was writing today's earlier blog and said that the ultrasound Keith had today (yes, he had another one) looked great. The liver is doing really well and the portal vein they were looking at had no changes but that they are not necessarily concerned with the higher velocity at this point. Everyone is very encouraged by Keith's progress. His vitals continue to be good.
Goodnight to all!
on Monday, 17 June 2013.
Posted in Newest Info
Last night was my first night away from the hospital since this past Thursday. Mom and Dad stopped by with the kids and I got to eat with them in the cafeteria. It was so good to see them! Dad went up with me to see Keith which was the first Dad got to see him since the whole ordeal started. Keith recognized who he was and we all talked for a bit. We decided not to let the kids come up yet because with all of the wires and ports coming out of Keith, we feel it would just be too scary to the kids. I had asked Keith what he would like and he said he would rather wait a while. If he's feeling up to it tomorrow, maybe he and Jackson can talk on the phone. I ended up going back to Adam and Cindy's with Mom, Dad and the kids and got my first good night's sleep since last Wednesday night. Both kids slept with me and it was great to be able to wake up in the morning next to them!
By the time I got back to the hospital today, Keith had already been on 3 walks around the floor! He's up and moving! They took him off of the oxygen for a bit, but his levels are still a little low with that, so when he's resting they like to have him back on it. He's VERY determined to get off of the NG tube (basically the tube that is pumping his stomach). Because a big surgery like his tends to make the digestive tract go to sleep it takes a while for it to wake back up. The stomach is constantly producing digestive juices, but it's not contracting to move that through the system. Without the NG tube right now, Keith would be vomiting that up and possibly blowing open his wounds. He's very adamant that he wants to try taking it out. I am patiently trying to explain to him why this isn't a good idea at the moment. I'll win this battle, but it's not going to be pretty.
They did another ultrasound today and everything is looking really good. The portal vein that I talked about in an earlier post hasn't really changed much. Still a lot of velocity in the flow, but the surgeons aren't very concerned with it at this point.
Right now Keith is resting and gearing up for walk number 4. They said he might be able to go outside and he thinks this sounds good.
He received some cards today. Thank you for those! Your support has been wonderful! All my love to you all. Hopefully we'll be able to see you all soon!
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