Saturday, February 27, 2010

Going For the Gold

I guess with all the excitement of the Olympics, Collin really caught the competitive spirit and wanted to set his own record - maybe for most hospitalizations in six weeks.

That's right. Yesterday afternoon, we found ourselves driving Collin down to Children's Hospital yet again. Ever since starting the ketogenic diet last week, he just hadn't been himself and seemed to be getting progressively more lethargic and unresponsive. After a few episodes yesterday when I literally could not wake him up, I decided it wasn't worth the risk and took him in.

All of his initial blood work came back within normal range, which indicated that he's not having a problem with the diet itself. For the past week, however, we had been reading and hearing about how the ketogenic diet can affect blood levels and/or potency of some antiepileptic drugs in some children. This test takes much longer to get back and we still don't know the levels.

We ended up agreeing to be admitted overnight, mostly so we would be able to see our neurologist the next morning. This was actually a pretty good tradeoff, because we got to see how Collin did on the monitors overnight (no problems), which made us more comfortable about going home, and because talking things over with the neurologist is always a hugely positive thing. The same was true today. He listened to all of our concerns, answered all of our questions, honored all of our requests, helped us design a satisfactory plan of action, and just generally made us feel more empowered and at ease. And that is why we call him Dr. Awesome, people.

Last night, we skipped Collin's evening dose of clonazepam to help get some of it out of his body. He didn't sleep well and even though he had a brief period of wakefulness and interaction in the morning, he sank right back into his scary-deep-sleep/seizure pattern and ended up having about 40 seizures this morning. The interesting thing, though, is that they had grown increasingly minor and then he was able to fall into a good sleep on his own - with no extra meds. I'm choosing to take this as a good sign. We are also starting to wean his Keppra tonight. We'll give him a day or two to see if we see any improvements and then go from there.

I'm so hoping that we will see changes soon. It has been tremendously difficult to see Collin passed out and not himself these past ten days. I miss him. It makes me think of those days back in August when Collin was in his Topamax coma and we waited in eager anticipation for the magic time in the evenings when he would open his eyes for a few minutes. Like so many things this past year, I'm not sure how we survived that.

We definitely set a record for shortest, smoothest hospital stay, which was a nice change after the past month. We were in and out in exactly 24 hours and nothing went wrong the whole time we were there. Unless you count Collin's disturbingly huge green poop at 4 this morning that required changing his clothes and bedding. I don't know what it is with that boy and medical settings.

Wednesday, February 24, 2010

Tuesday, February 23, 2010

On Not Talking About It

First, you need to know that the overwhelming and mind-boggling support we receive from all of you - many whom don't even know us all that well - is one of the sustaining aspects of this whole experience. The insightful words of encouragement, the faithful prayers, the practical help and unexpected gifts all go a long way toward easing our burden and injecting joy where there isn't much. We feel buoyed and carried and propped and surrounded on every side by genuine love and interest. I will never catch up on all the thank you's I owe.

And it's actually because of this thankfulness that I feel like I can be honest and say that sometimes, it's just too hard to talk about it. All of it. I do fine with writing about it most of the time - it allows me time to think things through and dispense information at a comfortable rate. But there's something about the face-to-face or even the voice over the phone that is just unbearable at times. It's like people are looking to me for answers I don't have. And there's always the dreaded question: How's Collin? How do I answer that? The 'what' questions are so much easier than the 'how's or the 'why's - they're more specific and less complex. 'What did Collin do today?' or 'What is Collin's favorite Olympic event?' are much less daunting questions. I hate hate hate having to say that he's still having seizures, that he's not himself, that I have no idea what's wrong or what to do. I could say that he's good and that would be true: he's healthy, he's happy whenever he can wake all the way up, he's making progress on his NACD program in spite of everything, and he has everything he could possibly need. But I could also say that he's not good and that would be true, too: he can't get good sleep because of his seizures, he's totally out of it a lot of the time for some reason I can't figure out, he can't see and can't eat and can't sit up. So, I usually just end up saying that he's okay and hoping that the conversation will move on from there.

I think this is especially true during 'survival mode' times - times of particular stress or uncertainty that require every ounce of our concentration and energy. Like right now, for instance. I would much rather be talking things through in the company of friends instead of hunkered down at home learning this diet and calling doctors and counting seizures, but that's just not feasible. Plus - and this is another thing I can't really explain - I'm not ready yet for people to see Collin having seizures. It's too hard. It might not always be like that, but it is now.

Here comes the big BUT (wink wink, nudge nudge) - BUT, I do NOT want people to keep their distance. I never feel like saying 'Just leave us alone right now.' I never want my failure to call back or my inability to get together to be interpreted that way. We need you and appreciate you. I just want you to understand where we're coming from if we ever seem distant.

So, if you promise to keep checking on us, I promise to be honest if I don't want to talk about it.

Sunday, February 21, 2010

Ketogenic Diet: The Early Days

I didn't write this post earlier in the weekend because, frankly, it would have been too depressing for both of us. Collin was having more seizures than ever before on his first days of the ketogenic diet. We combed the internet and our own literature but couldn't find anything addressing this issue, so we called the neurologist in Cincinnati, as well as the keto dietician. Both said that we seemed to be doing everything right and just encouraged us to stick with it. I then contacted Collin's neurologist here in town, who agreed with the other two neurologists that we're seeing the normal ups and downs of Collin's seizures rather than an actual increase due to the diet and then gave us some parameters for increasing clonazepam while we tweak the diet.

But here's the thing. I don't believe any of this about his seizures not being related to the diet. He was on a pretty set pattern of 24-48 hours of seizures every two to four weeks, but just happened to start another cycle the night of his first full day on the diet and it just happened to last 6+ days instead of two? I don't think so. Think of the strain on his little body from going from breastmilk (supplemented with organic babyfood more recently) his whole life to a synthetic formula composed of 90% fat within 24 hours. Pair that with the resultant body chemistry change (which is the whole point, but still a big shock) and the accompanying constipation, nausea, and sleepiness that usually plague the first couple of weeks - it makes me want to seize just thinking about it. And as we have learned over and over, as tough as he ultimately is, Collin is a sensitive guy. He doesn't like change (can't imagine where he got that) and has to work hard at adapting.

So, I would be a dirty liar if I said that our initial experience with the diet has been a positive one. It was a rough, rough weekend. On top of the seizures, Collin was totally out of it a good portion of the day - like almost completely unresponsive - and when he was awake, he usually wasn't using his eyes or smiling. So, here's how it felt: things were going well with Collin - he was doing great with his NACD program and making improvements in interaction and skills - and we did this to try to make them even better, but instead made them worse. That's a sickening feeling.

BUT - and this is why I didn't post this weekend, when we were in the thick of things - I put together a chart to help me keep track of Collin's ketone levels and other diet information and realized that he's actually having about half as many seizures as he was late last week. I guess this would be more of a comfort if he hadn't had the spike in the first place, but it seems to me that it either means that a) the diet is starting to work, b) Collin is getting used to the diet, or c) both. I'm pulling for c.

The other good thing about this weekend is that it brought home to me once again the extent to which Kyle and I have learned to cope with hard things over the past year. When we felt that squeezing pressure of discouragement and anxiety Saturday, we packed ourselves up and went to the zoo. When Collin was still refusing to wake up by 4:30 on Sunday, we all went for a walk out in the sunshine. Both saved us. And even though this is another post for another time, those little redemptions are the moments I feel I can see God most clearly in this whole mess.

Friday, February 19, 2010

And So It Goes

I'm not sure why I thought this stay in the hospital would be easy and uneventful. Maybe the smooth admission tricked me into it. But after 24 hours of tolerating the formula well and having great ketone levels, Collin starting having seizures Wednesday night. At 7:00 the next morning, they started coming every 5 minutes.

That was when I called Kyle and asked him to come up to Cincinnati. A night of no sleep, dozens and dozens of seizures and a day of lots of decisions ahead of me was feeling like too much to bear alone. Plus, I hate for Collin to be alone during his seizures, which meant that I was barely having time to go to the bathroom, much less get out of the room for a few minutes. I cannot emphasize enough how thankful we are that Kyle works for a company and (especially) a boss who is so flexible and understanding. He packed up and hit the road right away.

Collin continued to have 10-20 seizures an hour for the next couple of hours, getting progressively sleepier since they kept waking him up from his sleep. After a third clonazepam, the seizures started to space out a little bit and he fell asleep at around 11:30 for the next 4 hours. Between that relief, Kyle being there, getting out of the room for a few minutes, and facing the prospect of going home, I was a new woman in no time.

The discharge process took unnecessarily long due to some insurance confusion, but we made it out the door and home by around 8:00 last night.

Collin is still having seizures periodically today and we've been in contact with the Louisville neurologist to devise a plan that will allow us to let Collin get some sleep while we wait to see whether the ketogenic diet is going to work. Based on their advice and our own experience, I think we may temporarily increase Collin's daily dose of clonazepam a bit and see if that helps.

In This-Time-Last-Year news: I was dating a bottle of breast milk to put in the freezer today (If the ketogenic diet doesn't work, Collin will have enough breast milk to last him until he's four. If it does work, I'll be able to donate enough to sustain a small country for a short while.) and I realized that one year ago today was one of the worst days of my life. It was the day Collin was transferred to Children's Hospital and the trauma of this past year really got in full swing. We've been through a lot since then, but nothing will ever compare to the pain of watching my son wheeled away from me down the hall in a big silver box toward a waiting ambulance - his little face looking out through the window - or the agony of walking out of the hospital to go home without him. So, even though watching Collin have seizure after seizure is horrible and I hate hate hate the feeling of not being able to do anything to help him, I can once again say that I am glad it's this year and not last year.

Tuesday, February 16, 2010

Change of Plans

After a full day of seizures and a harrowing drive through the snow, we celebrated Collin's birthday with Nana and Grandad up at the farm. He had our traditional peanut butter chocolate chip cake and got his first teddy bear from me and Kyle.

This morning, we headed into Cincinnati early to make our feeding team appointment. The hospital was practically deserted because of all of the snow, so we just walked right in wherever we went. The feeding team appointment was kind of anticlimactic. We already knew that all of his test results had come back normal (!!) and they basically just told us that we're going a good job working with him on his oral skills and that they don't want to do surgery at this time. But what came out of the meeting was fantastic: we were discussing the ketogenic diet with the nutritionist and...

SIDE NOTE/FLASH BACK: Yesterday, when Collin was having seizures, I called the neurology department at Cincinnati Children's to see if it might be possible for us to be admitted for the ketogenic diet while we were up here for our feeing team meeting. I was watching Collin "swim" in his pool, which really just meant floating in a seizure-med-induced haze, and the person I spoke with (who is a delightful woman, I have to say) told me that there was no way we would be admitted and that we would probably have to wait weeks because there was a long process we had to go through before it would be possible. I asked her what we were supposed to do while we waited and she said we would just have to do our best managing with medicine. I hung up and cried for awhile thinking how unfair it was that this was how we were spending Collin' birthday and just feeling discouraged all around. But then I packed for the week anyway and decided I would try to convince someone else to admit us while we were up here.

SO, the nutritionist this morning was really enthusiastic about the ketogenic diet and so were we and when she asked us if and when we might consider starting it, Kyle said, "Yes. Now." She laughed and then I told her that I was serious and had packed for the week just in case. I think it impressed her, because she went and called the neurologist to see if she had any objections and she didn't and wrote the orders right away.

From the feeding team appointment, we went straight to radiology for Collin's esophagram and upper GI study. It wasn't supposed to be until the afternoon, but since no one was there, they worked us right in. Collin charmed everyone and did wonderful with the barium and the tube down his nose and then we went to get admitted and were taken straight to our room. The next several hours consisted of a somewhat horrible IV experience (which is par for the course with Collin - it's like all his veins disappear when he sees a needle coming. They actually ended up having to use an ultrasound to find a vein.), an EKG and echocardiogram to make sure he would be able to handle the diet, some bloodwork, repeating his history and describing his seizures about 94 times to various people, and then starting the diet! He is taking a formula called Ketocal which is perfectly formulated to the ratio of fat, protein, and carbohydrates he needs to get into ketosis. I'm a little sad to watch him eating something other than my milk, but still excited that this might work and allow us to reduce his meds.

Kyle had to go back to Louisville for work, so Collin and I are slumber partying at the hospital for a couple of days - watching lots of olympics, eating crappy food, and cuddling as much as we can. Hopefully, he will tolerate the transition to formula well and this diet will be a good match for his little body. If that's the case, we could potentially be out of here by Thursday. Fingers crossed.

Sunday, February 14, 2010

TTLY

We have now officially entered "This Time Last Year" season.

This time last year, I was a month away from my due date and had just spent the evening starting to work on Collin's room with Kyle. I couldn't figure out why I was extra uncomfortable and couldn't get to sleep. Little did I know that my water was getting ready to break and in a few short and semi-scary hours, I would be holding my son in my arms.

It's strange and hard to look back on that me. I feel sorry for her and jealous of her all at once - sorry for what she was getting ready to face, but jealous that she didn't know it yet. But regardless - and even though Collin had seizures all day today and we had to give him big doses of meds and he was so out of it that he couldn't even wake up while we sang Happy Birthday to him - I'm still so glad that it is this Valentine's Day and not last.

And speaking of Valentine's Day:

Happy Valentine's Day to Kyle, my long-time sweetheart, my partner in hardship, my favorite.

Wednesday, February 10, 2010

Therapy Fun

Therapy Fun from Annie Kratzsch on Vimeo.

This is one of the activities on Collin's NACD program. He has strong feelings about it, even though we can't quite decipher what they are.

Tuesday, February 9, 2010

Couldn't Resist

Snow + Collin + Snowsuit = Good Times

Monday, February 8, 2010

LoveSac, Baby

At our NACD evaluation, Bob Doman recommended these foam non-beanbag chairs made by a company called LoveSac (officially the worst company name of all time). He thought it would enable us to keep Collin more upright without strapping him in like so many of the seating systems do. It would give us infinite incline possibilities while allowing Collin freedom of movement and helping him hold his head in midline, which he detests when it's up to him. We checked into the options and ended up ordering the CitySac so he would be able to use it for a long time and yet it wouldn't swallow our house like some of the bigger options might. Here he is enjoying it after some therapy. (That's how his father likes to bundle him up. Cute, but totally unnecessary.)




He seems to like it.

Saturday, February 6, 2010

Souvenirs

This hospital trip was such a blur that I didn't get it together enough to take many pictures.

Here is Collin with his impedance probe in. He made a mad grab for it every time we let go of his hand, so Kyle tied on his earflap hat and I put a sock on his hand. It worked great, although it made Collin a little cranky. Or I guess it could have been the tube in his nose making him cranky. I had a hard time feeling sad for him, though, because the probe tickled his nose (as you can tell by the look on his face) and made him sneeze about a hundred times that night, which was just as devastatingly cute each time.


This is our last morning in the hospital. Collin has just had his lumbar puncture and is waiting for his second round of blood work. The red thing on his right arm is the bandage around his PICC line. He rediscovered his love for his pacifier on our last trip to the hospital and it was priceless on this trip as well. He even got enough practice that he could hold it in his mouth by himself for a brief period of time.

I wanted to get a picture of Kyle wheeling me and Collin through the hospital in a wheelchair since they wouldn't let us walk from one appointment to another, but it didn't work out, so you'll have to use your imagination on that one.

Friday, February 5, 2010

[Insert Favorite Song About Home Here]

Collin did fantastic with his lumbar puncture this morning. Afterward, they took what looked like about a quart of blood from his PICC line, took a urine sample (the urine bag was faulty and they couldn't wait without corrupting the data, so they had to do a catheter - I think it bothered Kyle more than Collin), and then let him eat for a while so they could take some more blood to compare to the fasting blood samples. Watching them pull his PICC line out was like something from a sci-fi movie - all of that white tubing coming out of his little arm - but he was once again much more upset by the tape than the procedure itself. We also got the reading from his EEG yesterday; it was generally abnormal, but nothing that really stood out. Still no hypsarrhythmia, which is great. Honestly, abnormal brainwaves don't worry me very much. I know at least one very bright person who has an abnormal EEG.

And then we were out of there. Much like the rest of our visit in Cincinnati, the discharge happened so fast that we felt a little thrown off. As the nurse was doing Collin's last procedure, she told us that she had the paperwork all ready for us to sign as soon as she was done. We were gone in fifteen minutes, stopped by the farm to pick up the carload of junk we had left there, and headed home.

I know I've said it before, but I cannot emphasize enough how sweet it is to come home after a stay in the hospital, no matter how productive a visit it was. We kind of wandered around in a stupor all afternoon and didn't get much done, but we enjoyed it immensely and started getting ready for bed before 8:00. Collin made it very clear that he was thrilled to be home. He kept his eyes open, talked to us, laughed at our jokes, and then passed out as soon as we laid him down. I'm looking forward to a much-needed night of good sleep, followed by a weekend of as little activity as possible.

Wednesday, February 3, 2010

Well-Oiled Machine

It's hard to believe how much we've accomplished in our short stay at Cincinnati Children's already:

- Yesterday, we got checked in and ready for Collin's triple scope procedure smoothly and easily. Everyone - doctors, nurses, etc. - was extremely interested, friendly, and eager to help. At one point, we had three people in the prep room at the same time trying to ask us questions about Collin. Naturally, Collin was a champ during the entire experience. He snuggled with me and Kyle until it was time to go back. I got to hold him as they put the anesthesia mask on him and he loved it. He fell asleep with a precious coo and a smile on his face, which made it much easier to leave. He did great with the anesthesia and breathed on his own the whole time, woke up with no problem, and immediately had a big poop. The findings of the scopes were great: anatomically, Collin's airway, lungs, esophagus, and stomach are proportional, healthy, and properly formed. They saw no signs of aspiration. There was a patch of bumpy skin in his esophagus that could have indicated reflux, so they took a biopsy. Biopsies and the lung wash specimens will be back within a week. His Nissen wrap also looked somewhat loose, which isn't necessarily a problem - it depends on what some of the other tests tell us.

- One such test was the impedance probe, which was placed when his scopes were finished. This is a tiny, spaghetti-like tube that went down his nose and esophagus to measure acid levels and movement up and down the esophagus to detect reflux or other problems. It looked exactly like the NG tube Collin had before his g-tube, except instead of milk going through it, it had sophisticated and expensive wires. He had to keep it in overnight and the data will be processed over the next week. He found the whole thing pretty annoying - especially the fact that we made him wear his hat and a sock on his hand all night so he wouldn't pull the probe out. By far the worst part for him, though, was when we had to take off the tape that was holding the probe in place. Go figure. The things this boy endures without a peep and then he flips out over a piece of tape. I couldn't believe how much he was crying, but I enjoyed it while it lasted, as well as the opportunity to comfort him while he's crying - something I haven't had the chance to do very often.

- After the impedance probe came out this morning, we went straight to the ENT floor for Collin's FEES test (Fiberoptic Endoscopic Evaluation of Swallowing). This involved putting a small, flexible scope through his nose (he was like, 'are you KIDDING me?!) with a camera on the end and hanging it right over the opening of his throat. Then they added green food coloring to some breastmilk and some bananas and tried giving it to him various ways to see how he handled it. Although he had a tough time organizing things into a single bolus that he could swallow, he was able to work some back through his mouth and swallow it. I was shocked when they told me that he did a great job swallowing. I think I had prepared myself for the worst, but even after reviewing the video, the doctors all agreed that they had no fears regarding his swallowing - he is able to protect his airway and swallow effectively. I was thrilled. Collin was not, however, and started crying again when they took the scope out and took the bananas away.

- From ENT, we walked straight to pediatric surgery, where we had a consultation scheduled to discuss all of our findings from our tests this week. The trouble was (welcome to the wonderful world of Collin) that there were no conclusive findings. There is a booty load of information, but none of it is glaring or even indicative of something in particular. The doctor was wonderful and looked back over a good deal of Collin's images, called some of the other doctors, and listened carefully to our concerns and desires. He decided to order one more study for the next time we're up here (to meet with the Feeding Team in two weeks) that will show us more specifically what is going on in the esophagus. At that point, we will have three different tests to corroborate and will hopefully be able to make an informed decision about treatment or surgery.

- At this point, the Aerodigestive segment of our stay ended and the Neurology part began. Soon after we returned to our room from the surgeon, we prepared to take Collin to get his PICC line. This was an amazingly smooth and well thought-out process that seemed to cause Collin no discomfort whatsoever (except for tape removal, of course). They had a light-up crib aquarium for him and he just sucked his pacifier and watched the aquarium contentedly while they inserted a big long IV and snaked it up through his veins.

- We thought we were done for the day at this point until a small woman with a thick accent showed up to take us for an EEG. This was a little perplexing considering we didn't even know Collin was going to have an EEG. We wanted to know why he needed the test and who had ordered it before we agreed to go and she couldn't understand why we wanted to know, so after a few minutes of confusion we finally decided just to go with her and ask questions later. The EEG was fairly standard and uneventful and we should get the reading tomorrow morning.

So now we're back in our room for the night at last. We gave Collin a bath to wash the EEG gunk out of his hair, put on some fresh jammies, and rigged up the cool mobile the Child Life group brought for him. We're going to clean up a bit and try to relax for a few hours. Collin will begin fasting at some point tonight and will have a urine collection (we're really pushing for a bag instead of a catheter), blood collection, and lumbar puncture in the morning. Then he'll be permitted to eat and will follow up with another blood and urine collection. If all goes well, we'll be out of here by early afternoon and headed back home before the worst of the snow.

Tuesday, February 2, 2010

Getting There

We have two days of this crazy week under our belt and tomorrow we go in to the hospital to be admitted for at least one night and maybe two. I wouldn't say we have anything in the way of answers yet, but we are learning some things.

The reading of Collin's MRI last week seems to show some loss of volume in his brain since his last MRI in June. Interestingly, it also shows myelination, which means that his brain cells are forming the coating that makes communication between cells happen faster and more efficiently. Myelination is a very important part of brain maturation, so the fact that it is happening while his brain volume is possibly decreasing (I say possibly because the MRI has only been read by one person at this point) is a total mystery to the neurologist. She wants to do some biochemical testing to try to get at the heart of why this might be happening, which may require us to stay Thursday night as well. If we stay, they would insert a PICC line in Collin to get more accurate blood samples and would also do two lumbar punctures. Needless to say, we have a few questions before we agree to this, the most important of which is: will doing these tests actually be of benefit to Collin, or will they just teach us something that we won't be able to treat?

Today was the high resolution CT scan of Collin's lungs. The purpose was mainly to look for signs of aspiration, but also just to make sure that none of his issues are lung-related. Because it requires the patient to hold his breath and Collin isn't quite to that point yet, he had to have a breathing tube inserted as well. No one had deigned to mention any of this to me until late Friday afternoon. I had been under the impression that he was having a standard CT chest scan, which likely wouldn't even require sedation. So getting used to the idea of this much more involved procedure wasn't easy. Then we got a nurse anesthetist who evidently missed her calling as a ruthless corporate higher-up. She was condescending, rude, and didn't listen to a word I said. I refrained from eating her face off and we just had a very mild verbal tousle, but it bothered her enough that she called in backup and didn't talk to me anymore. Which I was fine with. Collin did fantastic through the procedure and we were out of there in an hour.

This afternoon, we had our consultation with the pulmonologist who will be performing one of Collin's scopes tomorrow. I was very impressed with him - he was friendly, thorough, very perceptive, and extremely detail oriented. I feel much more comfortable with the procedure tomorrow knowing he will be in the room the whole time. He also showed us Collin's CT scan from this morning and said that it looks very clear from what he can tell, although there is one spot in the right lung he will take a closer look at tomorrow. He spent a long time with us answering all of our questions and paying close attention to Collin and his breathing.

Kyle made it back up to Cincinnati tonight, which is a happy thing. We were all exhausted, though (even too exhausted to watch Lost, which is really saying something) and headed for bed to get some good rest before we start our hospital stay.

On a side note - and I know you were all on the edge of your seats about this one - Collin has evidently worked things out with his pooping issues. I changed eight dirty diapers today: 3 huge, 3 medium, and 2 small. I still feel like I smell it wherever I go.