So there are perks to being in the hospital often. The main one is a lot of people know you. We got admitted to the surgery floor where we spent 20 days in jan/Feb. The nursing staff knows him really well on this floor and we have the same primary nurse! We also got admitted to a dual service of surgery and the team who just discharged us. We know the surgery fellow. She saw us Friday in the ER and we obviously know the other team well as they had us for 2 weeks and all the doctors will be the same at this point. In bad news, our surgeon who is a critical team member is on vacation. He's literally the one doctor I want to see the most. Obviously he deserves tone off and I'm so glad he is actually taking it, but our timing sucks.
CHOW is seriously the best! We have a few close friends who work in the ED and my MIL was part of their first flight team, as you can tell, we're big fans of that place! When we were there with DS's seizures last April and again this fall we had the same nurse and she honestly was the most amazing person ever! I'm sorry the surgeon you want to see most is on vacation. I can't imagine M being in a better place!
Post by goldenlove3 on Mar 27, 2017 7:55:07 GMT -5
Oh no, I'm so sorry you're back in the hospital. I wish you guys could catch a break. Monty is such a little fighter and you are one of the strongest mother's I know, so you'll get through this hurdle. Sending you so many thoughts and prayers!
Oh Sarah, I'm so sorry things aren't just easy or boring for you guys. It sounds like you are in excellent hands though. I will be keeping you all in my thoughts.
I'm so glad M got to rest! Hopefully they can figure out what's going on with his feeds. I really you can find some time to sleep, you need your energy too. Still thinking about you guys!
Post by shedreamsincolor on Mar 28, 2017 8:05:21 GMT -5
Thinking of you and M @sarahwithanh. Hopefully your primary doc gets back soon and as a silver lining maybe someone looking at him with new eyes will have thoughts for a different plan that hasn't been talked about before. I've seen it happen before! Sending lots of love and prayers.
Thanks for the update and that today seems better! Praying things continue in this direction for everyone! I really hope you don't need to resort to anything too invasive! M is such a trooper in all this and I'm still praying for you guys!
Post by tallblonde on Mar 28, 2017 21:42:51 GMT -5
Just seeing this. So sorry you are in the hospital. Hoping you have some good news soon. I have recently spent two weeks in the hospital for my mom and would walk by the children's hospital entrance and my heart just would break for parents there for their kids. Sounds like you have a great medical team though and hope they can get to the bottom of this.
Post by goldenlove3 on Mar 29, 2017 12:24:58 GMT -5
Sending you lots of prayers that he comes out of sedation as smoothly as possible @sarahwithanh! And that will be great if that corrects his feed issue. Do they think it's been like that for a while?
Praying his recovery is smooth and for peace and comfort for you as I know this recovery phase must only heighten your anxiety now. And man I hope the misplacement is all that has been wrong. If this is the problem, what is the chance it will move again?
Sending big hugs your way, and praying for you and sweet M. I really hope that the g-tube misplacement will prove to be the issue and y'all can get back home soon with a baby that can eat again. Poor guy, I'd be hangry, too!
So happy to hear the update. I hope you both make it through the next few days unscathed. Is M hooked up to many tubes or wires? Could you take walks around the hospital with him? Why don't you start a book series? Something light like Harry Potter.
Post by sophiegrace on Mar 29, 2017 19:50:48 GMT -5
@sarahwithanh we've been discussing doing the whole jeans on fridays if you donate a dollar thing for a few months. I think we'll go ahead with it now and start a collection to donate. Seems like an amazing and vital organization and I think it would be something everyone would be thrilled to help out.
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