As I posted earlier, today was a challenge. Luckily I got a great nap in during the middle of the day and am ready to face another night of laying next to my baby's hospital crib.
We didn't really learn anything new today. The hearing test has been rescheduled for September 2nd. They gave Isaac the sedation medication and he just wouldn't fall asleep. That boy needs an army of meds to slow him down. I was surprised because PT and OT really wore him out today.
Night's are hard. The nurses come in a lot to check on him. He's got a bunch of gunk in his chest that gives him a really raspy breath. It usually requires them waking him up and patting his back and chest in order to get him to cough. Once he coughs, it's good - but that takes awhile. His oxygen levels also continue to dip too low and he requires some through his nose during the night.
The radiologist was able to get the feeding tube into his small intestine but that was a very difficult procedure to watch. They had to strap him down and he screamed the whole time. Heart wrenching. I kept reminding myself that he really needs to get this nutrition. As the day wore on, it was so obvious that on top of it being an "off" day, he was tired and I think just needs some "juice". Getting some vitamins and substance back in him will hopefully give him more alertness tomorrow.
We continue to be humbled and are thankful for the support of our friends, family and even people we don't know. Our friends have put together this incredible website: http://www.friendsofisaac.net/. Please DO NOT feel obligated to donate. We truly know how tough times are right now. Prayers and emotional support are just as important to us!!
2 comments:
Hello Linville Family,
I saw your post through a couple of my friends on Facebook. First off, my prayers are with Isaac and your family! I know what a tumultous time this is for you all as I have had a critically ill child as well. When my son Jackson was 4 months old he had a large tumor removed from his abdomen where he spent 16 days in PICU and another 3 weeks in a regular room at Seattle Childrens. After reading your blog it is amazing how similar the recovery process is.....feeding tube, dealing with the pain/anxiety meds as well as the withdrawal process, moving from PICU to the reg unit and working w/all the different specialists. if you do end up staying at Children's in Seattle I can assure you that we had a wonderful experience there and it is an amazing hospital. Stay strong and I'm happy to see that Isaac is continually improving!!
Isacc on my heart! J. Fitzpatrick has told me about your blog and your family. I have been praying for you little guy! My heart just goes out to your family to have to see your little man and have some unknowns. We will keep an eye on you and your blog.
PRAYING HARD!
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