Baby D is back home after his most recent surgery and recovery. The general surgeon who performed the test on his rectal sphincter said that the sphincter was in fact in the correct position so he does not need reconstructive surgery. The worry was that the sphincter (the round band of muscles that make a person continent) was in the wrong place, thus making it impossible for Dominic to gain continence as he gets older, and perhaps causing the constant stooling and skin break down he is having. Luckily the location is correct, so we don't have to worry about the series of reconstructive surgeries we were possibly facing. The surgeon did say to file in the back of our minds the possibility of a colostomy bag in the future, if we are unable to get his diarrhea and skin break down under control, but luckily that is years ahead of us.
Then the plastic surgeon came out and said the repair went beautifully, as well as he could have hoped. He said Dominic did well under anesthesia and the repair was sutured together with disolvable stitches so no further trauma to the mouth was necessary. After the surgery, while he was still sedated, he had a follow up MRI of the brain.
The MRI showed increased ventricle size. There are 4 ventricles in the brain, which are places that the cerebrospinal fluid flow through. The doctor didn't say which ventricle, and I didn't think to ask, but I'm assuming the 4th ventricles are the ones he is talking about. The 4th ventricles lie right in the middle of the brain, kind of like two small mango-shaped spaces on either side of the brain. The reason for this could be one of two things: #1 it could be that the head is growing but the brain is not, causing the ventricles to appear bigger. The other possibility, #2, is that the body is producing more CSF (cerebrospinal fluid) than it should, causing increased pressure on the brain. From the MRI it was not an emergency to check which one of these two is the case at this point, so we will have a follow up MRI in two weeks, right before we see the neurologist, to check for possible increase in size of the ventricles. It also showed decreased mylenation, which we already know.
The stay in the PICU (pediatric ICU) was fine... I was so anxious about "giving up control" and having to willfully be charitable to the nurses. If you ever read this blog, you know that is one of my big struggles. I was hoping to be a good advocate, while at the same time being kind and flexible. God knew what we needed because the nurse that first day was just wonderful. She was so caring and considerate, completely putting us at ease. Then that night we saw one of our friends (the mom of the 20 year old boy I have talked about- the one that gives me hope for Dominic), and by goodness, turns out she was our nurse! So, I was able to fall asleep knowing he was in good hands... she has been taking care of a child just like Dominic for 20 years.
He had good pain control that first day and night with IV morphine and the next day (discharge day) he was switched to oral Lortab, which he is on at home. His pain seems to be well controlled... he sleeping peacefully beside me.
Yesterday before we left we had a meeting with the Palliative Care Team, which if you remember, is comprised of a physician, a Nurse Practitioner, a Chaplain, and a Social Worker. They serve as a buffer for families with "medically fragile and technology dependent" children. I hate how that sounds. Technology dependent. It just reminds me that 50 years ago a child like Dominic would not have survived. The meeting went really well, we voiced our good, bad, triumphs, and concerns. They are so considerate and listen so well. They take action on things that can be fixed and really advocate for the child. We are so fortunate to have them.
We are home now and Dominic is resting well. You can tell he is not feeling great because he just wants to be held, but he is not crying, which is a good sign. We are so fortunate for our little guy; we sure love him.
Thankful to Our Lord,