What is this stuff they call sun?
Ok, so I will start with Caleigh's feeds. Here we go...
Last post, we had stopped her continuous feeds once again. The next day we started up again at 2ml an hour. As of today we are at 4ml an hour and tomorrow we will go to 5 ml again. We started 'cycling' if you want to call it that today. This means 4 hours of continuous feeds and 1 hr off, 4 hours on, 1 hr off. We are trying to see if this will give Caleigh time to move the formula through during this break time and give her tummy a rest. So that is the scoop on the never ending drama of Caleigh's feeds.
On to the rash......it's almost gone. Just a few little speckles left over and in a day or two it should be a thing of the past.
On to the TPN, aka... Caleigh's total source of nutrition. With the GI docs advice we have decided to stop cycling Caleigh's TPN off for 4-8 hrs a day. She still isn't growing well and it doesn't make sense to take her nutrition away during the day when she really needs the calories. We are still giving her Lipids (fats) only 3 times a week. Lipids are really hard on the liver and even though she needs the fats to grow we are going to hold off on that. We are still holding out for Omegaven which would replace the Lipids. Once we get on Omegaven Caleigh will be able to have fats everyday. Since Eric and I expressed the importance of Caleigh growing her TPN has been adjusted. She gets more calories, sugar and more time on the fluid. As a result, Caleigh's hair has started to grow, she seems to have more energy, she appears to be sleeping better and she has started bringing her hands up to her mouth and cheeks! It's amazing when someone is malnourished because all their body can focus on is growing and surviving. It's been nice to see these small changes. Everyone assumed that as soon as we added the calories and sugar back into the TPN that Caleigh's liver levels would get worse, but to our amazement her Bilirubin this week is 1..... which is absolutely a god send!
wow those eyes are big
On to the long list of meds......
I'll kinda briefly explain SBBO, short bowel bacterial overgrowth. In Caleigh's tiny belly she has damaged areas of small bowel. These areas don't push and pulsate like they should. This is where her motility problems come in. Once formula reaches these areas, it sits for longer than it should because the muscles are permanently injured. This brings on the bad bacterial overgrowth. Caleigh has been on many antibotics, probiotics, etc. for this in the past. We've tried everything and that darn bacteria shows up every 1-2 wks. This makes Caleigh very gassy, makes her have watery stools and is the reason why she gets a big belly every time. So what to do? Our GI docs consulted with Cincinnati Children's and they came up with an antibiotic mixture that they use on their 'tough' kids. Tobramycin, Colistimethate, & Amphotericin......otherwise known as MUD, an intestinal decontaminate. These are normally very serious IV medicines, but in Caleigh's case she gets them through her G-button. Caleigh will be on the MUD for 10 days and then off for 10 days to see if it keeps the bacteria at bay. She's on day 3 so we will see how it goes in a week or two.
We are sending Caleigh's 3 ft stack of medical records to Pittsburgh Children's for evaluation. They are going to deal with our insurance and then we will try to set a date to take Caleigh up for an evaluation. As soon as I get more details, I will share the news.
I was asked today "what have you learned from Caleigh?" Of course my immediate response was patience, but then I thought about it all day and added some more to that answer......
patience, understanding, coping skills, bravery, strength, endurance, I've learned that I can't control everything, life isn't always fair, and life is definitely uncertain at best, live each day, God is everywhere, and most of all... unconditional love