Update: Logan’s CBG test came back normal! Everything looks great. Its interesting..He is a happy, healthy, growing baby boy aside from his muscles weakening due to SMA. We are so thankful for his continued strength right now! We do not have to go to any check-ups unless we are concerned or he becomes sick.
With a clearer mind, I am finally able to sit down and write about yesterday. Yesterday was one of the most overwhelming days I have had in a while. From 9am to 4:55pm, I was on the phone every time Logan went down for nap.It was crazy. However, most insurance things have been straightened out so it was worth it long term in those regards.
The morning started with St Louis neuromuscular division calling to say they approved a Jan 9 appointment! The nurse was rather rude though. She told me they couldn’t guide me because I wasn’t a patient and they couldn’t get us in any sooner. It reduced me to tears which made her upset. At one point in the call she said “Do you want the appointment or not?” I told her yes I did. And then tried not to cry harder when I got off the phone.
I walked over to Logan (who was watching Mickey Mouse…his fav show lol). I had tears streaming down my face but I was trying to suck it up and get him down for nap. I looked at him and said “hi bubby” and his face lit up with a smile. He cooed for a few seconds while smiling. I’d like to think he was saying “Its going to be ok mommy”.
Right after I put him down for nap, our main nurse we work with at the pediatricians office called with lots of information. Our pediatrician called STL and figured out everything we needed to do to be prepared for our visits and to make sure Logan is doing ok.
They have ordered a cough assist to use once daily right now. We also have a suction machine on the way. A sleep study is being ordered along with a CBG (capillary blood gas) test. We have also been told we need to keep him on minimal outings.
After attempting to write all that down and take it in…I sat and cried. The least of our worries was the rude bedside manner of the neuromuscular nurse who called. It hit me like a ton of bricks. This is really happening. Our baby boy is going to get weaker and there is nothing we can do but help make him comfortable. The numbness I have been feeling left and all the sorrow washed over me. I was able to keep it together in front of Logan though. And Lucas when he got home from class.
Brett and I have decided he will take Lucas to class. Starting in January, (if not next week) he will also be picking him up. We are going into town tomorrow for a weight check with one of our favorite lactation consultants 🙂 But it deeply saddens me that this will most likely be the last one.
I’m so glad we told Lucas Sunday. Yesterday was so overwhelming. Today, the numbness has somewhat returned. I don’t feel like crying every time I look at Logan. We had the CBG test done this morning and will hopefully hear the results it this afternoon.
I feel like I’m forgetting something… Oh well. I’ll edit/update if I think of something.
Thank you to everyone who is following this journey with us! We appreciate every one of you. Here is a happy photo to lighten up this post 🙂 Logan is now wearing 6-9 month onesies from Childrens Place and is now in size 2 diapers! Our baby boy is growing big!