Saturday, December 29, 2007


It has been a very frustrating few days. It seems that Noah thinks New Years is overrated, and prefers to spend them in hospital. On Thursday, Noah managed to pull out his GJ tube, balloon and all. He became so frantic with pain and got a good yank on his central line. There was a weak spot in the line, and with that yank he managed to put a hole in it. Of course, this all happens when we are 3 hours away from the hospital out at Brad's parents place. So we headed back to the city. By the time we got Noah to the ER, he looked terrible. His temp was 38.5C, he was beginning to have some respiratory distress and his blood sugar had plummeted to a frightening 1.6. Noah was given a ventolin mask and an IV was quickly started to rehydrate him and get some sugar into him. He started looking much better after that. Blood cultures were also sent and he was started on IV antibiotics in case he had developed another infection. Because of the worry of IV access and second IV was started as a backup in his scalp. Poor guy now has a really bad shave job on one side of his head!

By morning, yesterday, we had already lost both IV's and the search for a central line repair kit began. Apparently the line Noah has is an obscure size, so no one in Winnipeg has a repair kit the right size. Two were found in Canada and are being flown in to Children's Hospital here. But until someone could try to repair his line, Noah was in dire need of IV access. So yesterday he was taken to the OR and our surgeon inserted a PICC (peripherally inserted central catheter) in his right arm. This will get us through until we get the line sorted out. We thought he may have to go to PICU overnight, but Noah did great in recovery room and was able to go back to the ward yesterday evening. He also had a new GJ tube inserted yesterday by radiology. Needless to say, when we finally got back to his room we were both exhausted. Noah slept 17 hours straight, barely batting an eye when the nurses bugged him!

And what does the little monkey decide to do today? He pulls out his GJ tube once again!! So this afternoon it was back to floroscopy to have the tube reinserted one more time! And as we were there, his central line completely fell apart into 2 pieces. It has been beyond frustrating and one of the rare times I have actually felt like just giving up. And yet, somehow, by the grace of God, we find the strength to get through each hour of each day. We pick ourselves up and move on to the next hurdle. Now it is just a waiting game, as we wait for the repair kit to arrive. It was supposed to come today, but we are still waiting. So we are praying...praying that the kit arrives...praying that the line will be repairable...praying that we will be able to get the line unclotted...praying for negative cultures...praying that this whole mess can be sorted out quickly.

The good news... Noah's Ampho is DONE!!!


Anonymous said...

Yes, we are praying as well, that God would hold you in his care, and watch over you. He is your hope and shield and He remains n control. He is with you and Noah every moment. Trust in the Lord with all your heart, Lean not on your own understanding. we love you all. love mom

Ramona said...

I was so excited you were out for Christmas Noah- and now this... I have no great message to leave here other then I am praying for you and the Drs. As your Mom said (Nichole), God is with you and He is strong enough to hold you. Even as you feel like giving up, He will not give up or grow weary of you.

Brenda said...

'Just wanted to let you know that we're holding you close in our prayers as well. Our God is faithful!

erin said...

we continue to pray and our so thankful you could stay away from the hospital on christmas. May God continue to strengthen you each day and we thank him for the hope he has given us.
Happy belated birthday Nichole. Sorry to hear it was another one spent in the hospital and we pray you will return home soon.

harderl said...

I love you Noah. It was such a joy to spend time with you over Christmas.
Auntie Laura