Jacob has been home for a week! It was a little nerve wracking to bring Jacob home this time. Jacob has never been on these many medications in his entire life. Several medications can't be given with other medications, so we have had to work out quite the medication schedule. Today, we are giving medications at 14 (!) different times in 24 hours time span. One medication, we're giving at 4 am, since it is the only time we can fit it in. I am not a fan of those early mornings...
We also had to invest in a food scale and white board to start weighing Jacob's diapers and recording his stool output. We do that, so we know when we have to do stool replacements. If Jacob poops more than a certain amount in one diaper or in 24 hours, we have specific instructions on how to replace the stool.
We also came home on continuous feeds, which means Jacob is hooked up to his feeding pump around the clock. Over the last week we have worked on getting Jacob some breaks from his feeding pump a few times a day, and at the same time slowly, slowly progressing his feeds. It is going to take weeks for us to get back to his old feeding schedule.
Lastly, Jacob's already low immune system is now even more suppressed due to him being on steroids. We have started moving all his therapies to the home, and unfortunately Jacob is not allowed to go back to school until May! It makes my heart a little bit heavy, but it does make sense. We are meeting with the school district next week to see what we can do in terms of home schooling. We're going to have to rely on Sarah and Jacob's sweet friend Selina for socialization this winter! I can't think of two better people to keep him company. We're also going to have to make sure that Jacob is not exposed to any children with cold symptoms. If Jacob is exposed to the flu, he will start taking Tamiflu prophylaxis.
We are also keeping ourselves busy with several doctor's appointments and tests each week. They are monitoring Jacob's overall health very closely. We have multiple labs, which need to be run each week. We're lucky to have Gemma who can simply draw labs in the home!
So, a lot going on for sure! I am considering myself quite the time manager, but Friday I just didn't seem to be able to keep up with all of Jacob's stuff. I was so hungry from not being able to eat all day, so had to get Joakim to take a break from his work to make me a sandwich :- I didn't even make it down to the kitchen!
In the middle of our busyness, we're SO happy! There were times in the hospital when I didn't know if we ever would be able to take our boy home again. I don't think anyone of us could have imagined Jacob looking this good after a week at home. He is pretty much back to his old self - just quite a bit stiffer from laying in bed for over a month. He interacts with us and he is smiling! He is busy making his Christmas gifts for his teachers and therapists together with Gemma and sis. He is hanging out with Libby at night. Mysteriously, the stool has slowed down quite a bit, and seizures are well controlled. Jacob is happy to be home, and so are we! I am catching myself smiling and feeling warm in my whole body from simply looking at my boy.
I am ending this post with a photo of Jacob. Sarah had "hat day" at school today, so Sarah decided Jacob got to join in the fun!
Thanks again to all of you for following and supporting us during the last couple of trying months. We're hoping we can continue to report from home!