Thursday, September 16, 2010

Okay.... I haven't updated in a while. Some times it feels like the longer I take between updating, the harder it is to blog again, and with facebook it is sometimes easier to give a 3 sentence update and be done. Anyway...
{disclaimer: there is much talk of mucous, vomit and diarrhea in this post. Continue reading at your discretion}

My last post was on the 7th (a Tuesday). Matthew was still doing a lot of vomiting Wed. and Thurs. and then when I came home from work on Thursday evening, Matthew started vomiting again. I went in his room and he was throwing up blood. And he couldn't stop. Then he started having diarrhea, and within a hour and a half he was still vomiting blood and there was also blood in his stool. We called his GI doctor and he told us to head to the hospital. We went to Omaha, and once we got there he continued to vomit for over 2 hours. It was horrible. His feedings were still going in his J tube (his small intestine) so it didn't make sense why he was vomiting. They had me stop his feedings anyway and they started IV fluids. We were admitted in the early morning hours on Friday. It was decided on Friday to let his "gut" rest for 24 hours and see if the vomiting subsided. Like magic, about 2 hours after the feedings were turned off, the vomiting subsided and he was able to rest most of Friday.
  • Saturday: the decision was made to start pedialyte to see if Matthew's body would tolerate that. Things went perfectly. No vomiting, and he was happy.
  • Sunday: During rounds we decided it was probably best to try to take Matthew off the ketogenic diet. We had made a plan with our Minnesota Epilespy docs that this would be our next step if the vomiting continued. Within 1 1/2 hours after starting the formula that would be used to help wean him from the diet, Matthew started sounding very mucousy in his throat and then he started vomiting. The diet was stopped again, and pedialtye restarted. The doc's decided Surnday evening that we would start 1/2 strength "weaning formula" 1/2 strength pedialtye. All evening and night he was so mucousy and started having diarrhea again. I spent most of the night suctioning his throat so he could breathe past the mucous. In the morning, he starting vomiting again.
  • Monday: With the start of him vomiting again, his food was again stopped and pedialyte started. How frustrating. I'd done some research on soy (which is the main ingredient in his formula) and everything I read said that increased mucous was a sign of a soy allergy. I couldn't get it out of my head that maybe was allergic to soy and that is why we've always had such issues with vomiting since the start of the diet. And especially since it was now going straight into his intestines and not mixing with stomach acid that maybe it was really affecting his body. So I discussed this with the GI doc's. They only raised an eyebrow at me. They didn't quite believe me or buy my idea. I didn't care though. It made sense to me. They did think it would be beneficial for us to try to go off the ketogenic diet cold turkey and try a "elemental" formula. This formula has no soy or dairy added, and the proteins are broken down to help him digest them. They would start 1/3 strength in the evening. The rest of Monday went well. He did well on the new formula. No vomiting, no mucous.
  • Tuesday morning we went to 2/3 strength formula. The doctors said if he would tolerate this, he could go home. Six hours into the formula, he was doing beautifully. We got to go home.
The only bad part now, is we are seeing a LOT more seizures. Which in a way is good, because I was questioning whether the diet was working (it was doing some that we can't go back on far as I know, you cannot be on the keto diet allergic to soy and dairy)

We have started a new seizure medication to help with the seizures, but it will not be up to full strength for 3 weeks. It's hard to see him have up to 15 seizures a day. The weird thing is though, that he is SOOOO happy now, he is vocalizing again, which he had all but lost on the keto diet (I don't understand that, but we do know it not a "vocal seizure"; he is doing it response to us talking with him)

We have seen essentially no vomiting. The last two days, in the morning, he has vomited, but it is quick, and he doesn't continue on for 20 + minutes.

Matthew's arm is doing much better. It is still sore, and you have to be careful how you touch it, but he has been wiggling it out of his little homemade sling, so we made the decision today not to use it anymore. He seems to do okay with that. We aren't having to give him pain medicine around the clock either.

Matthew started private PT up again this week. I will try to post about that later. I think it's a good fit. I was nervous about starting outside therapy again, but I think this will be a benefit for Matthew.

So that, I believe, is all of our life updates for the last week and a half. I promise, I will try to post something next week that doesn't have to do with hospitals. I am tired of living there, and I think Matthew would agree :)


Kristen said...

Wow, that was some update and all taking place within a week!! You must be exhausted. Praying Matthew continues feeling better.

Carla said...

Oh Jill! I hate when docs raide their eyebrows at mothers who know what they're talking about. Dairy/soy allergies are awful:( Glad to hear you are home & praying you guys get some relief!

Audrey Sue's Mommy said...

Your soy allergy theory sounds logical to me.
Man, I completely agree it's easier to update on fb than blogging... Guess that's why I'm a once a month kind of blogger.
I will be praying that this new seizure med helps your little guy. You two both have an amazing strength and I find it very inspiring.

Quinn's Diary said...

What kind of formula are you using? We use Vivonex Pediatric, it's the same thing, no milk or soy and Quinn does pretty good with it! Hope you do well with that, I think it totally makes sense to switch formula, I don't know why the doctors would not think the same thing! Good for you Mom!

Jolene said...

I was just wondering if you have joined the facebook group I started "parents of children with hydrocephalus" ? If not please do!!