2023! The days are long, but the weeks and months just fly by. We had a quiet Christmas with just the 5 of us. On Halloween, we started the weaning program for Lily. It was 4 steps, and at each step we decreased the amount of formula we gave her through her tube. Each step was about 10 days, so in just over a month, Lily went from fully tube fed to basically fully oral! She already had a lot of skill and experience eating different types of food. She just needed to feel hungry in order to eat more. I'm so glad we found out about Growing Independent Eaters from some fellow EA parents. I still give her all of her meds through the tube plus some water boluses. She doesn't drink enough yet to stay hydrated, but our GIE team tells me that will come with some more time. When she's a bit more established with eating, we'll start trying to give her meds by mouth too. She did lose a little weight during the process, but it wasn't even a half pound! And she's already gained it back.
Unfortunately, around the same time we started the last step of the wean, her reflux at night got really bad. Every night she was waking up crying, coughing, and sometimes vomiting. I called Boston, and they suggested starting her on a medication called erythromycin for gastric emptying. You may recognize it as an antibiotic, but it's given in such a low dose that it doesn't treat like an antibiotic. Instead it helps the stomach empty faster so that there isn't anything in the stomach to come back up. During the day she's fine. It's only while she's sleeping at night that we have any issues. So we gave her the new med at bedtime and it seemed to help maybe a little. So then we started a second dose at lunch time. Right after that she got sick with a respiratory virus and pink eye. So it was difficult to tell if it was helping because she was waking up at night because of her cold. That was right around Christmas. Now she's healthy and still waking up at night. She's not coughing and trying to vomit anymore, but she's still waking up crying sometimes several times a night. I talked with one of the GI doctors in Boston yesterday and she said there really aren't any other medications to give at this point (she's already on 4 different meds for reflux), but we could increase the bedtime dose of the erythromycin. We started that last night and should see a difference by tonight already. So fingers crossed. It's been over a month of very poor sleep for us. Another issue we're facing right now is the cost and availability of the medication. In December, the medication was covered by our insurance because we had met our deductible. Now that it's a new year, it is very expensive. I found a good Rx coupon at some of our local pharmacies, but the smaller pharmacies said they can't even order it right now because there is a national shortage. The pharmacy connected to the hospital here has some, but they don't take Good Rx. So we are debating within the next few days if it is actually going to be worth it. If it helps her sleep better in the next few nights we will probably just pay it.
We're heading back down to Boston at the end of the month for an EGD and bronchoscopy. Hopefully the EGD will give us some clues to what is causing the increase in reflux. The doctor I talked to yesterday had a couple theories, but we can't know until then. One of the possibilities is that her hiatal hernia has grown and is causing an increase in reflux. The fix for the hernia is a surgery called a Nissen fundoplication, and it has lots of negative long term effects of it's own. I'm praying it's not the hernia. Another parent I talked to said she regrets having it done for her daughter. And she sees a motility specialist now that says the Nissen is the worst thing you can do for EA kids.
It's easy to feel disheartened and anxious about it all. I keep reminding myself of how far she has come and how much she has already overcome. I also have to keep reminding myself how God has worked the details and the timing so many times just right for her. Looking back it's often much easier to see how things happened just the way they should have for her good. He's still in control, even when our circumstances have us confused and unsure.
Another fun twist is that we are looking to move to Wisconsin. Joe actually had a couple interviews with a company just outside of Sheboygan. We are waiting to hear back any day. We are very excited about the possibility of living near family again and thankful for Joe's experience here in Bangor that has opened up more oppourtunities for him.
Lily's procedures in Boston are on the 27th. I'll post another update after that 💜
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| Eating pizza :) She's only wearing the backpack because she was playing school. |
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| Eating is so fun! |
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