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!!!!


Jamie said...

Great pictures! I'm SO glad you guys are home and I'm looking forward to hearing more about how things are going.
Noah's care sounds so complicated and I know that everyone's been doing a lot of troubleshooting to figure out what works best for him. I'll be praying for patience for all of you guys as you continue his routine at home - and I'll definitely praying that you can all go to Florida in a couple of weeks!


Lynne said...

Hi Nichole, Noah and family. My name is Lynne and I found your site listed on your comment on Zeke Hine's site. I am also a parent of a special needs child with a rare chromosome deletion. Bobby's deletion is a terminal microdeletion at 6p25.3. I don't know if you know about them, but there are two groups that help network parents of children with rare chromosome disorders. One is in the US and is Chromosome Deletion Outreach at and the other is out of the UK called Unique at You might already know about them, but I have found both very helpful. I have been able to get in touch with other parents of children with similar deletions to Bobby's, which has made us feel less alone in all of this. We will include Noah in our prayers. You have a beautiful family, and I can see you have amazing strength and faith and you are surrounded by love. God bless you and your family. We will pray that all stays well so you can enjoy your trip to Florida!