We're coming up on two weeks back in Children's Mercy and a lot has changed in the last couple weeks. In Bruce, in myself, in future plans. But that's life; you can't change it but you can adapt. And I am like a karma-karma-karma-karma-karma chameleon.
Health update :: If you recall back to last month, we thought Bruce, er, we were told by neurologists and gastroenterlogists, he was having a type of reflux that triggered 'seizure-like' episodes. So antacids were prescribed and Bruce got a purple pill a few times a day...and just when I mastered how to give a 4 month-old a pill, plans change. Big time. Last week a new neurologist came on board and met Bruce herself for the first time. She had heard about these episodes and wanted to see for herself. Since Bruce had been admitted I happened to have one captured on video on my new fancy phone and showed her. I'm a face reader and I didn't like what I saw on her face. Her funny resident with a bow tie saw the look too and knew what she was thinking. Her diagnosis, Infantile Spasms. And they are as scary as they sound.
Most babies are born with electricity in their brains that shows up on EEGs when they have Infantile Spasms. Bruce was not born with them so his EEGs have never shown the hypsarrhythmia that detects spasms but they can be triggered by issues in the brain and in Bruce's unique case, his brain abscess is the culprit. This is not something they have seen from brain abscesses but more typically from brain lesions or tumors. So, there was much arguement between all of his doctors that this was an incorrect diagnosis and we shouldn't call it Infantile Spasms but really after much debate, it is what it is.
He's started on a new medication that seems to be helping so far. He is not yet worked up to the dose where they will hopefully go away all together but that takes time. We have some options, medication-wise, to treat them because the goal is to eliminate them all together. And it is a possibility that he will grow out of them as his brain abscess heals. Infantile Spasms are kinda like super seizures...seizures don't hurt or do damage, unless you have one and fall and hurt yourself, but they don't cause brain development issues like spasms do. Bruce is behind physically developmentally but we knew that from all of the time he's spent in a hospital crib. During the second brief time home, we started working with Missouri First Steps and that will definitely continue but as a parent, I need more. And time will tell what, if any, damge has been done from the spasms.
When I was pregnant, I made some life-changing decisions with my unborn child in mind. It was a year ago exactly that my whole world changed and I am so thankful. But pregnancy does that for every woman. It is beautiful. I was a bubbling ball of hormotional momma hormones and willing to change my life plans and make every decision for the heartbeat growing inside of me before I ever made a decision for myself. And now that Bruce is here and I can touch him and hold him and shower him with momma kisses, nothing has changed. I am still making every decision for him as my number one priority.
So much changes for people when they become parents. For those of you who know John's and my history together, it's been trying at best. But we have overcome so much together and now we are raising a baby with needs we never dreamt about. Hell, we are raising a baby with needs no doctor ever dreamt about. An infant diagnosed at 13 days old with Pompe Disease who overcame hypertrophic cardiomyophathy within two months of a new treatment who then caught a common bacteria but then turned into bacterial meningitis and resulted in a brain abscess that is now causing Infantile Spasms? That's like a twisted medical version of the M.A.S.H. game I played as a kid to figure out which sports car I would drive and early 90's heartthrob I would marry. It's certainly not text book. And I drive a Malibu.
Plain and simple, Bruce is a medical miracle. We have a wonderfully unique little boy who is so danged cute. And we're going to make decisions that are out of the box because we have a very out of the box situation and want the best for Bruce, no matter what.
Last week ended with a conference with five of Bruce's many specialist doctors to come up with a plan for little man. I think they've got a good one in place and tomorrow is a new day. This week he will be getting a permanent feeding tube in his belly that will help administer all of his meds and always work on feedings. Also this week I have the numbers of some development programs to enroll him in. Where ever and whatever, it'll be for his best interest!!
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