His first night went well and we saw a decrease in his saliva production. Our ENT doctor woke me up at about 6am to see if we wanted to go home that day. I thought I was dreaming. He said he would put together the discharge and if we wanted to stay another night we could.
I couldn't find any reason to stay. Everything we were getting in the hospital, we could do at home. He was already back to his normal diet and was getting all his medications through his feeding tube. So home we went.
Our home care nurses resumed the schedule that night and allowed me to catch up on a little sleep. Today was a little rough with some restlessness due to pain. We are noticing his oral secretions are much less. It has been hard to evaluate how successful the surgery was due to his pain but I have seen an improvement.
In a couple of days he should be on the up and up. I am just so thankful we are home. We saw a lot of friendly faces from the pediatric ICU. It was nice to have people that knew Logan and our family. They gave us a very warm welcome. But it was great to leave so quickly.
I also have news about Logan's MRI and I am still not sure how to process it. I think one of my worst fears came true today but even that I am not sure about.
I received a surprise phone call from Dr. M, Logan's geneticist. She saw his MRI results today. Not sure if she was flagged by him being at the hospital or because she saw me in the hallway of the hospital but somehow she knew he had the scan.
His neurologist ordered the scan as a repeat and we had it performed after surgery to minimize the amount of time he has to be sedated. So back to Dr. M, she called today. The news she had was both good and bad. Logan has degenerative changes in the basal ganglia of his brain.
What is the basal ganglia, well it is part of your brain and can be found in the middle or at the base of the brain. This part of the brain is associated with movement.
Dr. M confirmed it was a degenerative change which is not a good thing. The brain of a two and a half year old should be growing not dying. I said I knew in my heart of hearts that the MRI was going to show degenerative changes. He continues to lose skills and function and has yet to regain many things he once did. To me that spells degeneration.
In our short conversation, she said she wants to look into glutaric acidemia. This is an inherited metabolic disorder. She wants to see Logan on Monday for more urine and blood tests.
Other than that, our conversation was brief and I was quickly thrown into a tailspin. I wanted to know everything about this metabolic disorder. I quickly learned that this is something that can be screened in a newborn screening which Logan had and was normal. He has also had the blood and urine tests used to diagnose this disorder and all were normal. A lot of the signs and symptoms do match up to Logan but my brain just can't understand how it would have not been found sooner. I guess some of the pieces aren't fitting together for me. I am wondering if there is more to what she wants to look for and that she may have some other ideas up her sleeve. I have learned that she is one to do her homework and I am confident she is exploring all options
If it is glutaric acidemia, we would be able to use a dietary supplement to slow or stop the progression. I have not read that the supplements would reverse the damage. If this was our answer, what a blessing we would have.
I hate to say it and I hate to doubt something positive in all this, but it just doesn't seem like it could be that easy. I know I am a pessimist, but if I got my hopes up every time a doctor came up with a possible diagnosis, I would be a basket case. Ok, more of a basket case than I am now!
I wish I knew more about this possible diagnosis and the wait is torture. Today was a really hard day. I was torn, do I sit at home on the computer and drive myself crazy or do I get on with my day. Thankfully my little sister was in town and helped me keep busy. Plus I had little down time in the evening between caring for Logan and entertaining friends and family. I am so thankful to have such a great support system even when I turn cranky at the drop of a dime.
Honestly, I am very scared right now. I don't know how to process the results. I only have a sliver of information to go on. Do I get my hopes up or remain pessimistic? I think I will remain guarded with my eyes wide open. My gut has rarely failed me with Logan. I hope this time it is wrong and that we will have an answer to our prayers.
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