Monday, August 17, 2009

Bad week....

On our last night of vacation at the lake, we heard Noah's feeding pump beeping and went in to find that the g-j had come out. Luckily the site was still open so we were able to put in the foley cath and resume his feeds at a reduced rate. We attempted to get the tube replaced here in town, but the hospital doesn't carry the type of tube he needs and it was going to take too long to get one ordered. We were able to get OR time at U of M just two days later so we headed up on Wed morning. Due to some complications, Noah had to go back in to the OR twice to have the procedure done. Needless to say, two procedures in one day under general anesthesia took quite a toll on him. He had some pretty bad tissue trauma to the site and a lot of pain. By Friday I called the surgeon here in town because he still was in so much pain and the site looked awful. They started him on an antibiotic and we started giving him Motrin for pain. This has seemed to help somewhat. By the rest of the weekend he was playing again, but still not 100%. Last night he woke up crying in the middle of the night and I went in to find that the g-j was out again....Brian and I were just heart broken. There is no way he is in any shape whatsoever to tolerate another procedure and I am not putting him through it again. On the other hand, he looks terrible. He is just so skinny. Giving him a bath last night I just couldn't help but think that he is so skinny he looks sick. His upper body is just skin and bones. There is no way he can afford to lose any calories. In fact, we are going to switch to a 45cal formula. In past, he has never been able to tolerate large volumes of formula in his stomach, hence the need for the g-j. Last night when the tube came out, we put in a spare g-button that we had. We are at a loss of what to do now. If he doesn't tolerate the g-feeds, he will be forced to have another g-j placed, but we are going to try everything in our power to avoid it. The feeding clinic is just around the corner, but we have to have the tube situation under control so they have something to work with. This whole situation is just breaking my heart and I feel like there is nothing I can do for him to fix it....
Noah spirits were brightned by a wonderful visit with the Ellingers. Even though he was not at his best, I think Noah still had a great time with Mason. What an absolute joy it is to see the two of them together!
I have some great pictures of the boys I hope to get up in a day or two. Zane started tackle football and I have some good ones of him in his "gear" (is that what you call it?).

5 comments:

Jaime's World said...

Carrie,
WOW, I am SOOOO sorry! What a nightmare! I pray that the feeding group helps so that issues like these will become distant memories!
You continue to be strong throughout all of this and that's what Noah needs right now!
Wishing you the best!
Love and prayers,
Sheryl

Jeff Handley said...

So sorry to hear about all of that. May God bless you all and help you get through so that the feeding team can be successful.

bikurgurl said...

The boys and I are keeping you, Brian, Noah, and the boys in our thoughts and prayers.....

Anonymous said...

That is a BAD week!!!!!!!!! I'm so sorry, there is nothing worse than seeing your sweet boy in pain and you can't fix it!!! I'm going to pray for you all right now. I hope the Lord gives you comfort and peace today like only HE can and that healing for Noah will occur SOON!!!
Hugs to YOU,
Laura

Jean ashner said...

Poor Noah! Praying for some definite answers to these tube problems and feeding problems. Poor guy doesn't need these issues. Praying for you all! Soo so sorry!