... with no NG tube. Even with the x-ray machine the doctors couldn't get a tube to go down Luke's nose. I knew his anatomy was odd, but not this odd. It makes sense now that Dr. Hill is having such a difficult time with the choanal atresia. The radiologist says that he can always get the tube down with the x-ray machine, so he was quite surprised when it wouldn't work.
So the plan now is to just keep feeding Luke orally until he gets his g-tube next Thursday. As far as we know there is no problem combining the g-tube surgery with the urology surgery. They said Luke will have to stay for 3-4 days after the surgery to get his feeding schedule worked out. The plan now is to work him up to about 8 ozs. 4 times a day. This would be perfect for us, so I hope it works out. Also, Luke could keep having some solids by mouth to keep his feeding skills, and any calories from that would be bonus. He was "officially" diagnosed as "failure to thrive" on his hospital discharge papers, meaning he is under the curve for his weight compared to his height. His weight is apparently average for a 6 month old and his height for a 9 month old. The nutritionist wants Luke to have 900 calories a day to start to catch-up and we are only getting 600-700 in him right now by mouth. So Rob and I are confident now that the g-tube is the best decision for Luke.
Luke has tons of appointments next week - Dr. Hill, the dentist for the first time, and his 18 month ped. visit. I will try to update on some of those things before Thursday. Sam and Gus also want to join the cub scouts, so we have School Night for Scouting on the 19th. I hope they enjoy it. At registration they were very excited about going fishing and camping.
About Me
- Candi
- I am a stay-at-home-Mom to 3 terrific boys - 7 year-old twins, Sam & Gus, and 2 year old Luke. I am married to Rob, my best friend, who is also a wonderful father and husband. Rob and I thought having twins was a challenge before we had Luke. Luke was born with CHARGE Syndrome which causes a wide range of congenital abnormalities and life-long challenges. Luke's main challenges so far are bilateral choanal atresia, both sides of his nose are blocked with bone which led to him getting a trach, and moderate/severe hearing loss in both ears. He is also a beautiful, happy baby who adds so much joy and fun to our lives. Sam and Gus will be in 2nd grade this year and love books, Pokemon cards and their Nintendo DS games. Both boys are incredibly sweet and helpful, and Rob and I are so proud of them. Rob is Australian and I am American. He is a computer programmer and loves to read sci-fi books. Before having children, I studied Art History and worked at a museum. Now I channel my love of art into making things for my family and friends. We really appreciate the support of all our wonderful family and friends.
4 comments:
Wow, it sounds like Luke had kind of a rough week. Glad you are home now, though. Good luck on the G-tube placement next week.
Hugs,
Leslie & Katie
Hugs to all and I hope everything goes will with the surgery.
Hugs,
Crystal and Eva
that sounds bad i know when they tried to put an ng down my nose once was a thin monomitry tube and they wanted to do a ph probe they ended up taping both up and doing it all at once it wouldnt go down and it seemed t curl in a few bits my dr thought was somethign to do with the airway and the oesophgus and stuff i dotn have ca but i do have narro airways and they put it down to that
Have been away with Reu in hospital so just catching up. Glad u have a date for the gtube and a direction to move fwd. Getting the G for Reu was of course awful but he HAS been able to grow and put on weight as a result. Luke continues to look so sweet in the photos and reminds me so much of our Reu too. Cx
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