Jacob had to be readmitted this evening because they suspect pneumatosis. Seattle Children's thought he had the same thing a couple months ago based on an xray. After a few days of agonizing gut rest, he had another xray and ended up not having it. But here we are again. Jacob has been gradually eating less and less and ended up back on ng feeds this week. He's also been having loose stools and threw up a couple of times early this week and started back on anti-nausea medication. An xray revealed what they are calling pneumatosis again, so for now he is back on gut rest, meaning he can't take anything by mouth. It's so hard not giving him food and drink when he asks. Hopefully further investigation will show that he doesn't have it this time either, but who knows. There has to be some explanation for his symptoms, but I really hope it's not penumatosis or GVHD. He finishes his pred taper on Saturday and I was so looking forward to getting him off steroids and immunosuppressants. His other immunosuppressant is supposed to start tapering in a month. I hope that plan can stay on course.
This past week Jacob also had to get shots of neupogen in his leg for four days in a row. His ANC was down in the 300s, so he really needed a big boost of cell activity. He was very brave, and thankfully, we had a nurse come out to administer the shots. I really didn't want to have to give him those shots after all the other unpleasant things I have to put him through.
It's frustrating and disheartening in what feels like huge strides backwards. I am thankful to have my wonderful husband who sleeps in the hospital so I don't have to. I am also thankful to my in-laws who jumped right in to help with Ethan while we are getting situated at the hospital again. I am so blessed to have such a wonderful and supportive family. Ethan was excited to spend the night with them and Jacob was happy to come to the hospital because he wants to play in the playroom again. :) My boys are so cute. I can learn a lot from them, such as looking for the positive in any situation.
Please continue to pray for Jacob. We are clearly not out of the woods yet and there are still a lot of things that could go wrong for him. Please pray that his stomach will heal so he can eat again and we can go home soon, and that the doctors will be inspired and guided as to the best way to diagnose and treat him.
3 comments:
No! Oh Kylene I am so so so sorry! We are praying for Jacob always! We are prayign for you ALWAYS! We will now be praying for Jacob's Doctors as well. I'm sad i didn't think of that before. We LOVE you guys! We are sending our love your way! I wish we could do more for you!!! I'm so so sorry Kylene. I don't even know what else to do or say... silent HUGS! and more HUGS!!!
Thanks for the update. Sorry he is back in the hospital! Good thing they have a good play room he likes. We will definitely remember him in our prayers.
Tremendous,tremendous, bummer - to say the least. My heart dropped to see the title of the post. Your boys sound like such troopers!
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