We are still continuing to increase Noah's pantoprazole (Protonix) dose, as his stomach ph is still acidic. But the bleeding is much improved as is his stomach comfort. The big question will be whether we will be able to get this IV drug for home use back home. We have tried in the past, but have been unable to get it approved. However, the doctors here are adament that Noah needs it, and it is quite obvious that he does, considering the change in the color of his stomach secretions. Something that will have to be sorted out eventually. We also decreased Noah's TPN another 2 hours today, so he now gets a full 8 hours off the pump. Since no more tests were scheduled for the day and Noah was unhooked, we were allowed to have a pass for the afternoon. But because we are still waiting for a few specialties to come see Noah, we were given a pager so that the ward could page us back if needed. That meant we couldn't wander far, but we spent a relaxing afternoon taking a walk and hanging out at RM house. A company brought in dinner to the house today (which happens a couple of times a week) so that was a very nice treat. And, no, we never did get paged back.
When we got back to the hospital, there were gifts waiting for Noah (and for Kailyn & Joshua too). A friend that I got to know on the internet through our wish trip planning came by. So sorry we missed you Alison, and hopefully we will still have a chance to meet sometime. Thank you for the gifts. Noah was thrilled with all his Tigger loot!
When we got back to the hospital, there were gifts waiting for Noah (and for Kailyn & Joshua too). A friend that I got to know on the internet through our wish trip planning came by. So sorry we missed you Alison, and hopefully we will still have a chance to meet sometime. Thank you for the gifts. Noah was thrilled with all his Tigger loot!
6 comments:
Noah looks SO happy...too bad we can't all enjoy his smiles in person. It was nice to talk to you today, I've missed you! Take care, and as always...hugs to my Bean...
They don't appear to be wasting any time while Noah is here at Sick Kids. So many things to check. I'm glad you had the afternoon together out of the hospital. I wish I could have seen him with the clown. It sounds like he had a great time!
Jules
glad to see that the hospital is taking good care of noah. he looks more grown up since his disney pics, not sure why but he looks like a big boy to me. so cute. take care. kim
glad you had a relaxing afternoon yesterday! praying for more relaxing time for you both! Praying for the surgery tomorrow.
Just wanted to let you know we're still praying. I'm so glad this has been such a productive time and so much is being "figured out" about Noah. He is such a little man of mystery...
Love you guys,
Laura
That Alison is such a sweetheart! Love the photos!
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