Friday, September 28, 2007
We also started a bit of tube feeds, which at 5mL an hour, Noah seems to be tolerating. The insertion of the tube went fairly well. Although, the Lorazepam we gave him before the procedure to sedate him, ended up having the opposite effect. He was literally bouncing off the walls for 3 hours after we gave it, unable to settle himself. Don't think we'll be using that drug again!!
We have a team meeting scheduled for Monday morning to discuss the plan for this line and more long term plans. We are so tired of this place and days like today there seems to be no end in sight.
Tuesday, September 25, 2007
We are also going to try to restart some feeds, so tomorrow Noah will have his GJ tube put back in under flouroscopy. Hopefully he will be able to tolerate at least a small amount of feeds.
We are tired and discouraged and praying for a better solution to these reoccurring issues. Noah is in good spirits and looking much better today.
Saturday, September 22, 2007
Friday, September 21, 2007
Who'd have thought...2 years!! 2 years....
Our baby is no longer a baby! Our little peanut, our ray of sunshine...
We praise God for another year, another milestone we can celebrate. It certainly hasn't been an easy one. We spent 235 days this past year in hospital, muddling our way through so many new issues and illness, and prayed our way through a few more surgeries. And yet, somehow, Noah's birthday has crept up on us. Somehow another year has passed. A reminder of God's goodness and faithfulness through it all.
Happy birthday our dear sweet boy. We love you more than words can say. We pray for many more birthdays to celebrate!!
And in this crazy life, and through these crazy times
It's you, it's you, you make me sing.
You're every line, you're every word, you're everything.
~Michael Buble "Everything"
Wednesday, September 19, 2007
Connor, a beautiful boy from my TPN support group has gone to be with Jesus yesterday. His life has touched so many. He is now tube free forever. What a stark reminder of the fragility of our medically complex children and how quickly things can change. I can't even begin to imagine...
Your family is in our thoughts and prayers. We grieve with you.
Friday, September 14, 2007
The good news is that the other lumen still works well, so we are able to use it for the TPN and antibiotics. But having only one lumen is risky and at any sign of sluggishness with our working lumen, we will have to head in. Why can't things ever be easy for Noah? All these line complications are so frustrating and to lose half of this brand new line already is very disappointing. At least we were able to come home, but what a waste of a day.
Thursday, September 13, 2007
Monday, September 10, 2007
Noah is doing very well and he looks terrific. His cheeks are filling out and he is happy and full of energy. Hopefully we get a bit of a break before the cold/flu season is on us full force once again.
Sunday, September 09, 2007
On Thursday the surgeon decided to go ahead with the surgery. She removed his femoral line and put in a new tunneled double lumen Cook line in his chest. Noah did really well. He spent Thursday night on the surgical ward in a monitored bed and was then moved back up to CH5. Once that old line was out, the fever spikes stopped. He has been fever free for 3 days now and looking great. So the plan is to go home tomorrow once we get everything organized with the home IV and TPN programs.