Friday, December 29, 2006

Back in the Hospital

Nichole and Noah headed back to the hospital today. Please pray for a quick stay, healing for Noah, and peace for Nichole and our family. We were (and still are) planning to head south next weekend. Please pray that we can still do this. It would be another miracle but it can be done.

Thanks, Brad.

Thursday, December 28, 2006

Home Sweet Home!!

I still can't quite believe we are home. I had gotten so used to routine at the hospital that it feels quite strange to be away from all of that. We will miss so many of the wonderful people that become a large part of our lives over the last 12 weeks. We were so blessed by the wonderful staff on CH4 and CH5, and Noah came home with a truckload of gifts from those who fell in love with him. We also met some amazing children and parents on the wards, and being in hospital together is an instant bonding experience. My heart is with the families who couldn't take their child home for Christmas.

On the medical side of things...Noah now has an NG tube that has been threaded from his stomach into his jejunum (intestine) so that his food bypasses the stomach and goes directly into his jejunum. Our surgeon came up with this solution when we discovered that Noah is too small for any of the GJ tubes out there. Unfortunately, these tubes don't have a balloon to hold them in place, so we use an epidural catheter holder and tape. We have to be very careful that it doesn't get pulled out or it is back to the ER. The tube has to be inserted by a radiologist under flouroscopy. We are still having constant problems with leakage around the tubes, making his stoma and surrounding skin very red and uncomfortable. Now we are using Viaderm, Sulcrate and Aquacel to try to get things healed up. I am concerned that it may be infected, (which would explain the fevers) so we are off to the doctor this afternoon to have it checked out.

Noah feeds continuously for 20 hours a day and gets 4 hours off in the afternoon. He also has an NG tube that goes into his stoma to his stomach to drain out the bile that still backs up. This tube is hooked up to a mini hemovac (Jackson Pratt) that provides a continuous low suction to keep his stomach completely empty. Funny how we get so much enjoyment from filling our stomachs, but for Noah, he is happiest when his stomach is completely empty. We then refeed some of the bile back into his jejunem every 2 hours during the day.
Noah gets so much bile backing up that he is only able to tolerate being refed 6 mLs at a time, and the rest we throw away. Bile contains important electrolytes and so we have to supplement him with salt water to make up for the electrolytes he is losing. We use the salt water whenever we flush out his tube (after meds and refeeds). He will need regular bloodwork to monitor his electrolytes. I've included pictures of some of our hospital highlights and pictures of Noah at his best and his worst over the past 2 weeks.

We can't even begin to thank everyone enough for all the visits, meals, cards, child care and prayers. So many of you have blessed us and continue to bless us more than you will ever know. We are planning a family trip along with Granny & Grandpa to Disneyworld in less than 2 weeks if Noah is well. Please pray for health so that we will be able to take this much needed break!!!!

Tuesday, December 26, 2006

~~Merry Christmas 2006~~

Merry Christmas!! It has been wonderful to spend the past few days with family and watch our children enjoy their gifts. We've stuffed ourselves with too much food and spent our days being just plain lazy. Who could ask for more? It felt a bit strange to have our family come to us this year, but nice not to have to travel anywhere. Please continue to pray for health as Noah continues to have fevers and pain from his stoma. We will see our pediatrician tomorrow and hopefully we can figure out what is going on.

Sunday, December 24, 2006

Home for Christmas!!!!!

Our little angel is home for Christmas!!!!!!!!!
We came home yesterday and he is doing very well. Other than some weight loss from the past 2 weeks (down to 9lbs 7oz) and a cough, he is looking great! His GJ tube is back in place and he's tolerating his feeds well. It' been a long and difficult time, but God has sustained us. We are so thankful to be home for Christmas and we are looking forward to celebrating Christ's birth together as a family.

Friday, December 22, 2006

Christmas Gift

Your prayers are appreciated and are working. We are anticipating having Nichole and Noah home this weekend. Thank you for each prayer and please continue to pray as we are never sure of what tomorrow will bring.

Our family would like to wish all of our friends, family, and each one thinking of us during this difficult time all the best this Christmas. May you enjoy each person and moment this week to their fullest.


Sunday, December 17, 2006

Hospital Day 6

Once again, what we had hoped would be only a couple of days in hospital is turning into a longer stay than we had anticipated. How frustrating and disappointing it is to be back there again after only being home a few short days. The Infectious Disease Docters are still trying to figure out exactly what made Noah so sick so quickly. They are thinking it was likely a flu virus that brought him into hospital. He had diarrhea, lots of bile backing up into his stomach and a high fever. It took only a few hours for him to be severely dehydrated to the point that his body was beginning to shut down. But then on Wednesday, Noah began developing respiratory symptoms and was requiring a face mask for oxygen by Thursday. His chest x-ray indicated that he has pneumonia now again. The doctors are unsure whether this is viral pneumonia (RSV) or another aspiration. From what the xray shows, it looks like it is likely both. He is doing much better on the antibiotics and we are slowly weaning Noah off the oxygen.
But he has now developed an issue with his stoma site. It has been leaking so much that the skin is breaking down and causing lots of pain. Last night he required morphine to be able to sleep. And to make matters worse, because of all the leakage, the tape holding Noah's GJ tube came loose and his tube has slipped out of place. So tomorrow he will have the tube reinserted under floroscopy.
So no plans for when Noah will be discharged yet. Please keep the prayers coming!!!!!!

Monday, December 11, 2006

Here we go again.

This afternoon Noah was looking poor and also had a fever. It was a hard decision to make because we just got home after over 2 months in the hospital, but an easy decision at the same time because we knew he was not well. Nichole took Noah strait to the Emergency Room where they immediately admitted him directly to the resuscitation room for an IV for rehydration. He was in rough shape. After finally getting a scalp IV and three liters of fluid in the first few hours, he is looking much better. God is good and we had Noah home for the Christmas celebrations this weekend, we can not complain. Pray that he recovers quickly and can be home again soon. Joshua already asked if Mom would be home by Christmas. They are already thinking long term and learning to be patient and be happy with the blessings we do have, as we all should.


Friday, December 08, 2006

WE ARE HOME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

After a 69 day hospital stay, Noah is finally home and is doing well!! We came home from hospital to a house full of family as we celebrated an early Christmas together. So things are a bit nutty here! More to come as well as pictures once we get settled in again.