Home This Evening

*edited to add pictures at the bottom*

Jimmie has had a much better day today. He has not needed any pain medication and this afternoon he tolerated 100 mls through his g-tube. He also was allowed to eat his solids again and boy was he excited about that! Rachael said he ate A LOT! She makes his baby food so she had made meals for herself and Jimmie ahead of time and packed it up for the hospital stay.

Jimmie has wanted to move around more today. He knocked a connection loose from his i.v. while Rod was holding him and blood started spurting! Aaaaaaa . . . That would have freaked me out, but Rod calmly got it under control and they called a nurse in who just ended up removing the whole thing. Jimmie was happy about that. That was his whole plan of course. (-;

Last night was rough. Jimmie is so much older and aware this time and he is clearly very anxious in the hospital. He is a very secure child when it comes to sleeping by himself in his own bed at home, at grandparents and even at my house. Last night though he was not having it! Rachael tried and tried to get him to sleep in the crib the hospital provided and he would just cry and cry. She held him for 4 hours and then Justin tried, gave up and held him for the next 4 hours. Poor little Jimmie Jim Jim.

So the good news is they were discharged this evening to go home!

Unfortunately there was a lot of "un-communication" as in "NO" communication- from the medical staff today regarding at home care. I'm not sure there is an organized protocol for healthy kids like Jimmie getting *only* a g-tube surgery. He was in a tiny little room in some sort of "follow up- or special care" unit that the doctors and NP's do not obviously place high on their priority list. There were lots of big questions Rachael never got answers to. Like how much should our end goal be in his feed amount and a plan for moving his mls upwards.?? Why Jimmie never received any antibiotics when his surgeon insisted he be on them because it was a surgery involving his "gut".?? Whether or not he did indeed receive stitches (that will need to be removed) in his belly button.?? What to do if his g-tube button comes out.?? Rachael ended up tracking down answers and tools for that last one before they left . . .

Anyway-- we have found Children's to be amazing and incredible in the skill with which they perform procedures on our children (my daughter has had 2 surgical procedures there). But lacking a bit in the organization and communication surrounding these procedures.

It's always easy to criticize though isn't it..? We all remain extremely grateful for Children's and everything they do for the kids here in our city and in the midwest.

So anyway, Rachael is feeling overwhelmed with his wound care and just the changes in the logistics of feeding Jimmie tonight. She knows in her head she'll get used to it. She knows he'll heal and it will be ok, but tonight it "feels" overwhelming regardless. If you know Rachael and many of you do "in real life" and others who have never met her may have an idea- she loves things to be "just so". Loose ends and unanswered questions are a challange for her to live with. Pray for her to relax and have as much peace as possible while remaining vilgilant (as she always is) with Jimmie's care.

Most important- Jimmie is doing great! Praise God!!!

Thank you for praying this through.

Here are some more pictures from Jimmie's time in the hospital . . .











Love,
Amber