Tuesday, November 27, 2012


This afternoon it was time for the dreaded care conference. I had a long list of questions for the doctors, and was ready for difficult decisions. Dr. E., Dr. C. and Jacob's pulmonologist had all come to support the right decisions for Jacob. It was great to see our core team around the table.

Each Monday, the attending for each specialty team changes. This means that every Monday we do get to see a new GI doctor. To our surprise, the attending of the week did not agree at all with doing a full endoscopy of Jacob! With Jacob advancing to his regular feeds in 24 hours time, and the stool slowly tampering down over the last 2 days, he felt that something was working, and we should not put Jacob through a procedure that could have life-threatening consequences. You could see a sigh of relief around the room. At the end of the conference, Dr. E. said that it had been the most productive care conference in a long time!

So when the big obstacle was out of the way, the next big question was "when can we go home?". Friday is the day we're shooting for. Friday! That is only 3 days away! I can't belive it...They still want to monitor Jacob over a few more days, and there is a lot of paperwork that needs to be put in place from new medications, to Jacob's experimental drug from the research pharmacy, to a whole GI plan to go home on, appointments to be scheduled across specialties, and figuring out a schedule for Jacob's all home medications and feeds, weaning plan for Jacob's steroids and other GI meds. We will also get Jacob's Pamidronate treatment (for his osteoporosis) done in the hospital this week, so we don't have to come back for that on Monday.

Jacob will stay on steroids for a bit longer. GI thinks that it might actually help him. They will slowly wean him off them, but it could mean that Jacob will be on steroids for about 2 more months. This is not great for him due to the immune suppressing side effects, but if it means we get to go home, we'll take it.

Sarah is planning Jacob's home coming party. Pizza is on the menu and she is still figuring out the movie of the night. Polar Express is high on the list. We can't wait to have Gemma and Libby back on Team Jacob. We can't wait to all sleep under the same roof again.

And for tonight, I think I might sleep ok on the hospital couch for the first time in a very long time. Jacob's GI issues are not fully under control yet. It might be something that he will battle for a long time, but it is such a difference to be able to manage it from home.

A sincere thanks from all of us to you all for supporting us throughout this challenging hospital stay. We now just need smooth sailing between now and Friday...

Much love,



  1. Great news!!! I was at Children's for 5 hours with Kimi this afternoon. She was just having medial branch nerve blocks. I wanted to go up and see you guys but I knew the conference was this afternoon and didn't want to bother you. She is back next Tues for SI injections and I thought I'd visit then. But, this is better news that you will not be at Children's and will be home where you all belong!! What a long long stay...I'm so very happy you have a plan and it includes going home on Fri!! Praying that Jacob will be strong and ready to leave as planned and that Sarah and he will be able to sleep in their new Christmas Jammies under the same roof! Smiling for all of you right now! Linda

    1. Thank you, Linda! You are always so supportive! Love to you and your family!

  2. Keeping my fingers crossed for all of you!

  3. Way to go team Jacob! Praying for the best homecoming party and a full recovery for Jacob!

    1. Thank you, Michelle! It was a good homecoming party!