It doesn't seem fair ... Mom and Dad are doing all the studying and training but poor Graham has to take the tests. The good news is that all of this testing and training is part of the preparation process for going HOME ... tomorrow!
Mom and Dad have been practicing putting in Graham's nasogastic tube that he will need for the next few weeks to get his fortified breast milk. The NG tube must be removed, cleaned, and replaced every week. They have also been practicing (on a dummy) changing the dressing on his central line that must be done once a week under sterile conditions. They will actually do the dressing change on Graham tomorrow before the trip home.
Graham's sleep test and car seat test indicated that his breathing difficulties will necessitate assistance because of something called mild obstructive apnea (different from sleep apnea). As a result, Mr. G will be on oxygen with a small flow of air (one-quarter liter/minute), and will be on an apnea alarm system during the night and when he is in his car seat. Respiration Therapy will educate us on using these devices this afternoon. An infant CPR class was taken earlier this week.
Changing the dressing on the G-Man's omphalocele was drastically simplified yesterday. The skin around it has almost completely healed, so now all that is required is a fairly large band-aid type covering.
G's care will be challenging, but we are confident and looking forward to being at home with our precious baby boy.
Great news!! We're sure things will go well for all of you with all of your training. He's a VERY precious cargo!! You all are still in our prayers!
ReplyDeleteYea!!!! This was such great news to hear as the whole Ott clan checked the blog today down in FL. Hope everything goes well with travelling home tomorrow. We'll be thinking about you guys. Andy and I will be in touch soon to plan a visit to Roanoke! xoxo!!!!
ReplyDeleteSo happy you are heading home with your baby boy!! You guys have come a long way and I am so glad that Graham is doing well! We will be thinking of you guys:-)
ReplyDeleteWow...sounds very daunting, but I know you will rise to the occasion! You both should get honorary medical degrees when this is behind you. So glad you are coming home and know you are too. It's been a long journey and you will be in my thoughts in the next challenging weeks. I have a little something for Baby Graham from the UK - let me know when he is receiving visitors.
ReplyDeleteGoing home! Isn't it great! We're so excited for you. We're so happy to have met you. I can't believe how similar our road has been. I'm happy to help in anyway that I can. Feel free to contact me with questions. We have had the apnea monitor, special car seats per Dr. Bull, constipation issues, home oxygen and so on. We do a lot of care with First Steps and have learned a lot about the medical system, from the patient view instead of the nursing one. Everything can be a bit overwhelming, but it calms once you get home. Take a good long shower, a deep breath and enjoy every minute of sweet little Graham. He's yummy! My email is findhammer@gmail.com and my cell # is 614-499-0440. Feel free to contact me any time. I'm so happy to have met all of you.
ReplyDeleteBig smile and have a wonderful day,
Congrats,
Deborah, Tim and Grace Williams
Katie and Bill:
ReplyDeleteWhat wonderful news!!! I'm just getting this update on FRiday morning (while babysitting my newest granddaughter). So you will be going home today -- fantastic!! I have every confidence in both of you being able to take care of the things he needs to have done. They know you can do it too, or they wouldn't let you go home. Please tell Quentin and Susan how excited we are for them too. Take good care of yourselves and God bless you all!!!
Love,
Betty and Hank
AWESOME!!!!!! I'm finally gonna be able to see Graham!
ReplyDeleteAnd the G.Man said "YIPPEE THERE'S SO PLACE LIKE HOME!!!!!" Followed by " LET'S GET ON WITH THIS BEAUTIFUL LIFE WE HAVE!!!!!!" Much love and joy to ALL of you. j and b
ReplyDeleteThat is wonderful news! Congratulations and enjoy being home!!!
ReplyDeleteI am so happy for you guys. And I really admire your positive attitude through this whole ordeal even when the news was not good you always looked on the bright side, God Bless you for that, and he will see you through this next phase. You are in my prayers.
ReplyDelete(Sorry I haven't been able to come back to curves as planned the people Gary works for are selling out so he will be out of a job soon).
Loretta Miller
Dear Katie:
ReplyDeleteJim and Patti Root told me recently about the journey you and Bill and Graham have had...and gave me the website address. I want you to know that you all (including Grandma Susan and Grandpa Q) are in my prayers and that I'm thankful to learn, just reading this, that Graham is coming home and may already be there, in fact. Please give greetings and my love to your Mom and Dad.
Fondly,
Bernie Nord