Tuesday, May 31, 2011

Summer Break

I just can't help it - my mind and body still work on a school year schedule. And that means that summer equals break time.

That's only part of the rationale behind our recent decision to cut back on Collin's therapies for the summer, though. Around March or April this year, we realized that something had to give. We were having two, sometimes three or four therapies a day throughout the week aside from the usual doctor's appointments and Collin's NACD program, which takes around 4 hours a day. We never went anywhere or did anything because of all of the therapy. I tried to keep some balance by declaring Fridays to be therapy-free, but Collin and I both ended up spending Fridays recovering from the four previous days. I talked things over with Kyle and it became clear that we were going to have to make some changes.

Now, there is a very special bond with an early intervention therapist. They come to your house and see you in your sweatpants every week. They teach you that there are people who are not at all intimidated by your child. They listen to accounts of terrible weeks or horrible appointments and understand as much as another person can. They think about your child when they're not there and then put their head together with yours to solve the mysteries. They break down the impossible into doable steps. They love your child like some strange and wonderful family-friend-expert morph. This is not the kind of person you want to stop meeting with.

But the fact was that Collin never played except in therapy. He didn't have time to rest or to just be a 2 year-old. And I spent all of my time being his therapist and physician, with hardly any left to just be his mama. These are things we knew we wanted and there are only so many hours in a day, so we decided to let some things go.

So, for six months (we started this plan back in April, but have been too busy with retching and appointments to enjoy it so far), Collin will be having speech therapy once a week, aquatherapy once a week (with some extras thrown in over the summer), and nutrition and occupational therapies once a month. We are also going to try to take it easy on NACD program for a few months, focusing on getting in 2 programs a day rather than 4.

This has opened up some breathing room for our whole family. We're planning to fill with walks, swimming, exploring, and hopefully some laziness.

Saturday, May 28, 2011

Cincy in Review

It was a busy few days in Cincinnati this week, with lots of appointments and info, but nothing a good old bulleted list can't handle.

Tuesday: Pulmonary
- The pulmonologist confirmed that some of the previous suggestions for Collin's central sleep apnea problem are not in his best interest (ventilator, caffeine citrate, maybe even oxygen).
- He also confirmed that he saw improvement in the reports from each of Collin's previous 3 sleep studies.
- He suggested a trial of bi-pap (a breathing machine I will explain later) during our sleep study that night, with the hope that it would actually fix Collin's apneas rather than just cover up the effects of them with oxygen, thus giving him more restful, efficient sleep.

Tuesday-Wednesday: Sleep Study
- We had wonderful nurses, techs, and facilities during this sleep study. It was a welcome change to our previous experiences.
- The bi-pap mask did not go over well with Collin and he took a long time to calm down enough to go to sleep. Once he did, the nurse came in far too often for my taste to adjust the mask in order to get the maximum effect. I understood the need, but I couldn't help but wonder how they expected to get enough recorded sleep to make a determination if they were constantly waking up the patient.
- We won't get any results for 10 to 14 days.

Wednesday: Recovery
- We stayed with Nana and Grandad on the Farm while we rested up from an unrestful night, scrubbed the glue out of Collin's hair, and got ready for another busy day.

Thursday: Nutrition and GI
- The ketogenic dietician was pretty impressed at the way we have managed Collin's diet, balancing the ketogenic diet with the blenderized diet and all of the various requirements that go with each. She made some scheduling and feeding suggestions that I am in the process of implementing, but had nothing to contribute concerning pooping or retching.
- The GI doctor basically said the same thing: 'wish we had more to offer concerning retching.' It's a common problem with no easy answer and sometimes no answer at all. It's wonderful that the Prevacid has made such a big difference (C is consistently happier and more himself now, but still retching during bowel movements and a few other random times).
- Our plan is to give Collin some more time on Prevacid to see if his overall decreased retching actually makes it decrease even more (the vagus nerve can apparently get aggravated by retching, leading to more retching, so the theory is that less retching would make it less sensitive). Once we start growth hormone (hopefully next week), we'll see if it has an effect on his appetite (increased appetites seem to reduce retching as well). If we're still having issues, there is a drug we can try that increases appetite and relaxes the top of the stomach in some children.
- With Collin's improvement on Prevacid, the doctor didn't think it was necessary to put him through any testing at this time (scope, impedance probe, upper GI, etc.). This decision was Collin's favorite part of the trip, aside from the squeaky airgun they used to dry the glue on his sleep study leads - he couldn't stop squealing and laughing about that.

In summary, we are hopeful to get good news from Collin's sleep study that will allow us to even further improve his sleep quality, and even though it was disappointing not to receive any revelations in how to eliminate Collin's retching, it's always good to hear that you haven't been missing something all along.

Thursday, May 19, 2011

Glimmers and Updates

I was just feeling thankful this morning that no matter how hard things are, there are always at least glimmers of hope and beauty in the midst of things and I wanted to share a few of ours:

Collin felt good enough one afternoon last week to do some finger painting. He painted one for his Grandad and one for Heather, who has helped us four days a week since September and is going to be working out of state over the summer.

In all of the retching stress, I forgot to mention that we had our four-month appointment with Dr. Awesome and it was overall very encouraging. He confirmed the minimal seizure activity on Collin's last EEG, noted Collin's 'quite remarkable' improvement in awareness and interaction, and that we are 'moving along, and obviously in the right direction.'

Somehow last week, we got the idea to try something like Prevacid to see if it might possibly help Collin's worsening symptoms. It seemed like an easy thing to try before our appointment in Cincinnati to eliminate one more treatment option and also give us something to do so that we didn't lose our minds. We discussed it with a few trusted therapists and then called the Cincinnati team, who agreed and called in the prescription for us on Tuesday (a particularly bad retching day). It's still a little early to tell for sure - we've had lots of false starts over the past months - but he hasn't retched a single time since his first dose on Tuesday and has been much more himself (happy, talkative, active) ever since. Even if it doesn't last, every break from the stress makes us better able to handle the next episode.

Yesterday, Collin had his fancy-pants two-hour hearing test. This test measures the brain's reaction to sounds since Collin doesn't have good enough motor control to look toward sounds and no language to tell us what he hears. His last test was back in the fall of 2009 when he had just stopped having spasms and had been on heavy medicines for six months, so it isn't really surprising that it was a little unclear as to how well he could hear at that point. This time, Collin had so many giggle fits at the sounds they were playing in his ears that they were afraid they were going to have to stop the test, since he needed to be quiet for it. Eventually, the novelty wore off and he fell asleep and passed all areas of the test with flying colors. We knew he could hear, but every time Collin passes a test that allows us to officially cross something off of our worry list, it's a good, good feeling.

Our sleep study second opinion in Cincinnati was scheduled for July, but we got a call this week saying that it has been moved up to Tuesday. We will see the aerodigestive pulmonologist Tueday afternoon to discuss Collin's history and options and conduct the sleep study that night. Then our GI/nutritionist appointment is first thing Thursday morning. It will be a busy, tiring week, but we're cautiously excited about the possible suggestions and answers we might get to make things better and better for our little champ.

Sunday, May 15, 2011

Survival Mode

I wish I could write that the feeding pump was just the ticket and that things have quieted down. However...

Despite being on barely a drip rate of food during the day and water at night, Collin's retching is as bad as ever. It actually feels worse, because any patterns we thought we had picked up on have disappeared - he retches at all times of the day and sometimes for no reason that we can detect. Also, it seems to be getting harder and harder to get retching episodes to stop once they start. The GI/Aerodigestive appointment in Cincinnati isn't until next Thursday, so aside from calling the doctor to request a trial run of Zantac or Prevacid before our appointment, we have officially entered Survival Mode.

We're no strangers to Survival Mode at this point, but we still always enter it reluctantly and usually later than we should have. It involves changes both logistical and mental: asking for more help from family and friends, receiving more help from family and friends, letting go of commitments, expecting less of ourselves, accepting that things are different and not ideal for the time being, and trusting that we won't need Survival Mode forever.

That last point is the biggie. As professed believers in a good God who knows and loves us, we're always working out what it looks like to have faith when circumstances continue to be crushing. We're certainly not the ones to preach a sermon on this, as it's the kind of thing that's pretty messy and not very inspirational when you're in the midst of it, but we do know this: that even though it feels like the stress will break us and that there is no help in sight for Collin and that things will never be back to our 'normal' again, the truth is that God is working even this very hard thing for our good and that no amount of hardship can change the most important things: who God is, who we are in relation to him and to each other. It doesn't change how we feel right now, but we believe it's true anyway.

Thursday, May 5, 2011

No Go

We started the HGH shots Friday night. Collin started retching again Saturday. By Monday, he was acting more withdrawn and sleepy. So that's that.

We stopped the shots midweek and are in the process of choosing and ordering a preservative-free formulation.

Problem solved, right?

Not so much.

Collin has retched every day since he started on Saturday. In fact, it seems to be getting worse and less likely to be linked with an identifiable cause. One morning, I was watching Collin lying on his side, recovering from a retching spell while he watched his iPad to distract him from the discomfort, and it's like things clicked for me -- not in the form of an answer, unfortunately, but rather as the ability to see the bigger problem. Even though growth hormone aggravated Collin's retching by making him feel bad, it is not the issue. The issue is that I've been seeing that same scene -- Collin curled up on his side, his eyes watering after finally catching his breath and his little mouth working so hard to manage all of the extra saliva from the retching without retching again -- far too often over the past months. It has become the new normal without us realizing it. We've been so caught up in determining what might have triggered each individual spell that we have failed to step back and take in the enormity of what's really going on -- that Collin was retch free for over a year and now he does it all. of. the. time. Something changed and the toll it is taking on Collin and our family is not sustainable. He is missing out on so much. He spends the majority of his time lying on the floor or sitting in his high chair because his meals and water are so slow in an effort to avoid retching from a full tummy. He hardly ever gets through a whole NACD program anymore, which is sad not only because of how beneficial they are for his development, but also because he really enjoys them. We don't leave the house as much because it's so hard to manage retching in public. Kyle doesn't rough house with Collin the way he used to because we're so afraid of jostling him too much. It's just not a good or healthy place for anyone. And it's not HGH or pooping or burps or food causing the problem, because he had all of those things (minus the HGH) for months and months before this started.

So I got in touch with the Aerodigestive team at Cincinnati Children's and we have an appointment with their GI doctor (the same one who saw Collin last year) at the end of May. His nurse called me today to finalize some details and mentioned that while talking to the doctor about Collin's case, he asked her if anyone had discussed with us the possibility of a G-J tube (like a G-tube, except longer on the inside and delivers food straight to the small intestines - a bigger deal in several ways that I won't explain here). He thought it might be a good option in order to give us a break from the retching, since Collin's food would be bypassing his stomach. However, it would mean that he would be continuously fed for 22 hours a day, which would defeat our purpose of trying to get him more active again. I was totally caught off guard by this suggestion, but it did serve a purpose by motivating us to get ourselves in gear and get what we had been discussing off and on this week: a feeding pump.

I was so happy to see the feeding pump go last year. It was one less piece of medical equipment in our house and its leaving brought me closer, in a way, to Collin's meals. Even though there is probably no technical difference, I felt more involved in drawing up and pushing in the food myself rather than pouring it into a bag and setting a rate on an electric pump. So, I wasn't eager to bring something back into our home that might be hard to get rid of again. But the fact of the matter is that, whatever the underlying cause, Collin's retching improves when he is on a very low flow of food and water. And unless we want to spend every minute of the day watching the clock to see how long it's been since the last time we gave him something, we need a pump. Also, it allows us to spread the volume out even more, because we can give Collin the majority of his water for the day very slowly over the course of a night. This means he has to handle much less volume during the day and has a chance to let his tummy empty out and rest between each meal. Kyle used his scary voice to impress upon our pediatrician's office the importance of getting this pump as soon as possible (involves faxing orders, connecting with the enteral supply company, etc.) and it was delivered to our door by 8:30 this evening. We did some quick calculations and had him set up for the night within the hour.

This will not likely solve anything. But with three weeks until we go to Cincinnati, it will hopefully make things better for Collin and let us know whether, if we're going to have to go to continuous feeding anyway, we can avoid the placement of another feeding tube (and the procedure it would require).

Tomorrow is a big day of blood work and neuro appointments and therapy, so we have our fingers and toes crossed for a night of rest and the beginning of some relief.