Lately I haven't posted much of the mundane details that have been going on. I haven't even really been on the computer. So I thought I would take the time tonight to give a brief update on what's been going on....other than nursing.
Caleigh now has all of her teeth poking through the gums. This includes her 2 year molars and all the teeth that had been slow to come in. We suspect that the TPN gave her the right nutrition to push the process along. Within the last month she has cut 8 teeth. 8. It's crazy.
Caleigh's feeds are up to 14 ml an hour 24 hours a day. It's not a lot, but she is tolerating it. We've continued making her formula with pedialyte instead of water. It seems to be working. Caleigh's stool is wonderful and she only goes once maybe twice a day. Caleigh's retching has increased as the volume does. We may be looking into a GJ tube instead of the G-button she has now. Because Caleigh's pyloric sphincter is not working properly her stomach immediately dumps into her intestines. The GJ would bypass the stomach and put Caleigh's slow feeds straight into her intestines. This could help with the retching. We are still thinking on it.
Since we signed up for the whole nursing thing we discovered Caleigh's blood pressure perimeters. This is what the kidney doc wants her blood pressure to be. The goal is 109/60. Well, turns out Caleigh's blood pressure is fine. She hasn't needed BP meds in 6 days. No telling how long we have been giving her meds and she didn't need it. From now on we will be seeing the actual nephrologist instead of the nurse practitioner. I'm pretty mad that the last time we went in she wanted to double Caleigh's dose of meds because she had gained weight. We decided to watch her BP and wait. Good thing. The tricky part of this whole thing is that Caleigh's dystonic movements make getting a good reading while she is awake almost impossible. Her muscles constantly contract when the blood pressure cuff is squeezing her leg. Most of the time the machine errors out. Sometimes it gives a crazy reading that you know couldn't be right. At the hospital, they have tried so much that she has blood bruises from the squeezing. So we put the cuff on her before bed and before nap time. We sneak into her room, hold our hands over the machines' speaker and take her BP while she is out cold. This may not be the best way to get a reading. I know that Caleigh's BP, or anybodies BP, should be higher when awake. So what do we do? Well, we have an appointment at the end of the month. I plan on bringing in a detailed log of Caleigh's blood pressures and asking lots of questions. Until then she will be BP medicine free.
It's up to Eric and I when Caleigh's intestinal surgery will happen. Our GI and infection control doc would like it done as soon as possible. Our surgeon referred to Caleigh's abdomen as a "hostile environment" and told us to call him when we were ready. No rush from his point of view. The plan is to go in and revise some of the narrowings that are causing the dilated sections of bowel. This is not the STEP procedure. Our surgeon is thinking that he should be as minimally invasive as possible. So trying this route first is the more logical thing to do. We agree. Instead of the surgery taking 8-12 hours it would only take 3-6 hours. The less they have to touch the better off Caleigh will be. The surgery will still need a month recovery in the hospital. I'm dreading every part of it. I've been reflecting on the possible outcomes of this surgery and as of right now we aren't sure when we will move forward with it. Until then Caleigh will stay on TPN and small feeds.
On Tuesday my Great Grandma, Caleigh's Great Great Grandma Winnie Mae Herrington passed away. She had just turned 94 years old on Valentines Day.
Grandma Herrington was Caleigh's last great great grandparent alive. I'm so glad she was able to meet Caleigh even though we didn't visit as often as we should.
We'll miss our Grandma Herrington. May she rest well in that big country sky.