Thursday, June 30, 2011

Reunited, And It Feels So Good!

Aside from the scary retching-stomach-virus-complications and the difficulty getting back on food and the being far away from Kyle, Collin and I had such a great time at Nana and Grandad's for half of June. We visited with family, sat on the porch, took occasional trips into town, ate lots of good food, and watched lots of good movies. And we got to end our visit by celebrating one year of seizure freedom for Collin!

It has been SO GREAT to be back home with Kyle, though. He and Collin have had some major father/son bonding time over the past week. Even though things are still in disarray around the house, we all feel better just being together.

Collin is doing so well and after months of stress from retching and sickness, it feels wonderful to enjoy this happy calm. His retching has all but disappeared and he is quickly regaining his strength from those very difficult weeks. We are doubling up on aquatherapy this summer and I feel like we're already seeing the benefits in the form of trunk and neck strength.

Collin also has finally been reunited with his best bud and cousin, Ila, who turned the big 0-1 on Wednesday! The two spent some fun time hanging out in the afternoon and getting reacquainted after their too-long separation. I know it looks like Collin was bored, but he was really just pooped from all of the excitement.


The home renovation is plugging along. Our bedroom furniture is back upstairs, but we still have a ways to go on the bathroom, which means no shower in the house. But the end is in sight and we're trying to pace ourselves in this last stretch, making time for a little bit of fun and relaxation as we go.

Tuesday, June 21, 2011

Miracle

Collin's last witnessed seizure was one year ago today.

I never dreamed I would be able to type that sentence.

In the past two and a half years, I've slowly learned that sometimes when you pray for an end to something, what you get is the grace to endure what you're facing, and that is a beautiful thing in its own right. But sometimes, remarkable things happen. And for that fact, I am offering up major thanks today.

Tuesday, June 14, 2011

Making the Most of Things

I may not have mentioned this, but three days before Collin came down with his first stomach virus a couple of weeks ago, we had just moved our entire upstairs downstairs in preparation for a fairly major home renovation we had been wanting to do for years. Things were so stable with Collin, so we decided to seize the moment.

Dramatic pause to let irony sink in.

When we got out of the hospital two weekends ago, the reality of what lay ahead of us was sinking in. Collin was still far from well. The bathroom demolition had barely even started. I had had no sleep for days. If we stayed in the house, everything would have to be structured around Collin's sleep schedule. So, we made a tough decision and packed up Collin and myself and headed to my family's farm in northern Kentucky, leaving Kyle behind to kick the renovation into high gear.

Needless to say, the situation is not ideal. Our home is a complete disaster. We're a hundred miles apart. Kyle is working all day, then coming home and working on the house all night (with the help of some amazing friends and family). We were initially only supposed to be gone for up to a week. Instead, Kyle came to visit us on Saturday and then went home for another week of hard work.

But we are making the most of things. I haven't gotten to spend this much time with my parents in years, so (especially now that Collin is doing so much better), I'm enjoying being in the place I grew up, with all of my extended family around. My parents, of course, are relishing the time with Collin and are taking good care of me as I recover from the stress of the past few weeks. We have a different daily schedule that, since we're so far away from home and didn't bring any equipment on our last-minute trip, doesn't include much therapy at all. Instead, Collin watches a lot of Baby Einstein videos and goes outside and plays with the 3 toys I had the presence of mind to bring. And, of course, we talk to Daddy every day. Collin loves to hear Kyle's voice on the phone. His eyes get huge and he turns toward the phone and smiles.

Kyle and I are definitely both struggling with being apart, especially after the difficulty of Collin's sickness and hospitalization. You don't realize just how much someone lightens your load until they're not there. We're just taking it one day at a time and trusting that this won't last.

Thursday, June 9, 2011

Update

Things were pretty touch-and-go Monday late into the evening, but we started to see some slight improvement Tuesday in the form of a few little smiles, better coloring, and more energy. After 24 'successful' (interpretation: not catastrophic) hours on broth and cream, I added a little bit of rice cereal to the recipe to start getting him some more calories. We really started to see the results of that Wednesday morning when he woke up with a smile, laughed a few times throughout the day, and was much more active.

He still has a terrible time with bowel movements, and he feels particularly bad in the evenings. We are still closely monitoring his ketones and have had to give him juice almost every day to keep them from getting too high, since he's still not up to his required number of calories. He also has acquired a cough somewhere along the way (I had the same thing at the end of my go-'round with this stomach bug -- weird), but is handling it well. His sleep is totally off from all of the craziness of the past week and I'm starting to have trouble remembering who and where I am as a consequence. But when I see those precious smiles, it all comes back to me.

Monday, June 6, 2011

Long Story Short

- Because of complications that his stomach virus caused with the ketogenic diet, Collin spent Friday night in the hospital getting fluids and being monitored.

- He was released Saturday with Zofran (anti-nausea) and a doubled daily dose of Prevacid. We were instructed to slowly reintroduce his regular meals. This was not a good idea. It had such a bad effect on his little digestive system that his symptoms were almost worse than ever.

- Collin had his worst morning yet today. Zofran seems to have no effect at all. I spent the day on the phone and email with Collin's dietitians, pediatrician, and the Cincinnati Aerodigestive team. We are slightly lowering his ratio while he's sick to keep him out of ketoacidosis and to make it a little easier for his digestive system to handle his food. We are also doubling his probiotic for a couple of days to recolonize his digestive tract. Finally, we are concentrating on easy to digest foods by using cream instead of oil as his fat source and integrating foods like broth, rice cereal, and eventually baby foods.

- Collin is very weak after so many days of stress and insufficient nourishment. He is currently on a constant drip of chicken broth and cream.

- Please pray that Collin is able to handle this broth and cream combination and that he turns a corner soon. Otherwise, we're headed back to the hospital.

Thursday, June 2, 2011

Collin's First Stomach Bug?

We can't be sure, but all signs point to the fact that we are dealing with Collin's first stomach bug. I'll spare everyone the gory details, but Collin started retching somewhat severely Tuesday afternoon. I thought this was strange after so many good days on the Prevacid, but he was also having lots of dirty diapers, so I assumed the two were related. My first signal that something was wrong was when he woke up out of his sleep retching -- something that has never really happened before. Things got worse and worse and I started to worry about him busting his Nissen, so I called the GI doctor on call at Cincinnati Children's, since we don't have a GI doctor in town and the team up there knows Collin fairly well. I didn't know the doctor I spoke to, but she was very thorough and as helpful as she could be given the circumstances. She felt uncomfortable prescribing anti-nausea medicine given Collin's complicated medical history, but okayed us to give him an extra dose of Prevacid.

Sometime in the middle of the night, after letting Collin empty his stomach, I went on a Pedialyte run and we started concentrating more on hydration. He finally calmed down enough to fall asleep around 6:00 in the morning and seemed to feel much better the rest of the day with nothing in his stomach. We decided to give him a full day with no food to give his tummy time to heal.

This morning, I made a special, easier-to-digest blenderized ketogenic recipe for reintroducing food. Evidently, though, Collin wasn't ready. After only an ounce of food, he started retching worse than ever and carried on for several more hours. I talked to his pediatrician, who recommended withholding food for another few hours then sticking to water and Pedialyte for the rest of the day. When we try to reintroduce food again, we'll do it much more slowly even than this morning.

It's awful to have a child with a stomach bug (we're still assuming that that's what we're dealing with), and our matters are made more complicated by the ever-complex Collin Francis. As I've mentioned before, because of his Nissen, he can't vomit, so we have to help him do it through his feeding tube. Because he can't eat, we have to try to figure out when he's ready for food/water/etc. on our own. Because he's on the ketogenic diet, we can't let him just skip too many meals because his ketones will get too high and send his body into acidosis. But we can't feed him things like juice or soft drinks or even too much pedialyte because his ketones will get too low and he could lose seizure control. We've been checking his blood sugar and ketones every 2-4 hours and adjusting accordingly with water and pedialyte.

Collin, of course, only knows that he feels yucky. Like any other sick 2 year-old, he has spent the past two days in bed watching videos and getting TLC from his parents. As nice as that is, we'll all be glad when this is behind us.