Yesterday should have been Owen's first day of 3rd grade. When I asked him if he was sad to be missing out his response was "Not One Bit!" He would rather watch YouTube videos in his pajamas all day, even if it means staying in the hospital. I'm not sure when Hospital school begins, but Owen won't be able to attend due to that darn Psuedomonas. :( He is going to be heartbroken so I won't mention it yet. I'm hoping his favorite teachers will come bedside and teach him so he doesn't miss out on too much of 3rd grade.
In rounds we were told that there is probably going to be zero chance that we will be able to get out of the room to go for walks. We discussed some other long term goals as well. Long story short.. his ANC (absolute neutorophil count) is increasing and his Hemocrit is rising. All good things!! The biggest challenge we face right now is his nutrition. He is just miserable with nausea and we all want him off the TPN/Lipids as soon as he can tolerate it. He is only taking about 300mls a day via Gtube and he needs about 1500mls a day. GI came by but they weren't too helpful because our hands are tied on what we can use because just about everything has a drug interaction. Pray specifically for the team to find a way to help his nausea go away.
Then the best news of the day. Someone convinced Infection Control to let us break out of our room!! Owen is allowed to walk the halls but can't go to common spaces (playroom, cafeteria, library, school). He has to wear a mask (which he does anyway) and yesterday we were told "clean clothes" but today we heard "clean gown". Whatevs.. we are out of the room!
He flipped over his puke bucket and beat on it like a drum and sang "This is Bananas.. BANASAS" (Gwen Stepfani) and his nurse (Jenna) danced around in her yellow gown and blue gloves. Should have got it on video. A few nights before he was getting in his pajamas and started singing 'Who runs the world GIRLS.." and was dancing around. He is keeping his nurses entertained and laughing.
6 comments:
Hi, I've been a long time follower and love hearing about Owen and your family. What true Superheros you all are. Have you tried any essential oils? DoTerra makes a blend of oils called DigestZen. It works amazingly well for my kids stomach issues. I know some oils also have drug interactions, so that may not be an option either, but it may be worth a try. My thoughts and prayers are with you always.
So happy Owen was able to walk around and gain some "freedom". He looks so happy. Praying that the GI team can control his nausea and quickly. Still praying for a heart to come soon. #prayersup����❤️��
Praying the GI team can figure this out. I also pray daily for a donor. So happy he can escape his room.
I was thinking the same thing. It is worth checking into.
I was thinking the same thing. It is worth checking into.
so glad that Owen got to break out for a bit anyway. He looked so happy. I'm sure he did work up a sweat with all that equipment he has to haul with him. All prayer requests spoken and unspoken are being sent up on Owen's behalf. God bless all of you
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