Rumor has it Ryan is coming home…as soon as this Tuesday. The HKU nurse practitioner told me Saturday they are only waiting on medical supplies (feeding pump, meds, gauze) to arrive to be able to send us home.
H.O.M.E.
We talked of this before, or hints of this before, about three weeks ago, but we never had an actual day and never had home supplies on order. This could be the real deal. I’m a little hesitant to get my hopes up until he is actually in his car seat on the way home, but I do believe them enough to be washing sheets, car seat covers and onesies.
AAAAGGGHHH!
Oh, excuse me. I just needed a moment to pull myself together. I’m back. 🙂 There are many questions to be answered and so little time. I’ll try to answer the most FAQs, but if you have others, please feel free to ask them in the comments section so I can answer in another post.
1) Ryan will come home with a feeding tube. The nurses will teach me how to insert it and check to make sure it’s in the right spot and how to work the pump.
2) We will see either the pediatrician or the cardiologist on a weekly basis. Ryan is scheduled for an ECHO on Monday to get another read on how his membrane is fairing. It will give Dr. D an idea how often she needs to see him.
3) We hope to have home nurse care 1-2 times per week while the feeding tube is present, less after that, if any at all.
4) Yes, we are freaking out that we will be alone with him with no doctors, nurses, or monitors letting us know what his ‘numbers’ are. I haven’t relied on his numbers for weeks now, but it is still reassuring to look up and be able to see his respiratory rate, heart rate, and oxygen saturations at the drop of a hat. After Ryan’s shunt surgery I asked Dr. J and several other staff members what Ryan would do should he be in distress and have been working on looking at the patient and not the monitors. But again, easier said than done.
5) Ryan’s biggest issues right now that require a home nurse are his feeding tube and his incision. His wound (from Mar. 5) is still healing. It is common for heart babies to have slower wound healing because their bodies are working on other survival mechanisms and because they have less oxygen to help with the healing. Ryan’s incision is looking really good, so this may not be an issue much longer.
I am really excited and terrified for Ryan to come home. It’s exciting to think we could settle into life as a family and no longer have to choose between visiting our son/brother in the hospital instead of doing normal things like going to the park or playing in the snow or having a quiet day at home.
On the other hand, we will now transition to truly having three kids and what that means. Will he sleep through the night? Will Ainsley (our baby) be willing to give up mommy’s lap? Will we be able to go out places or stay in for fear of germs? No matter what, I know we will be fine taking it one day at a time, as we have the past nine weeks.
I think the hardest thing for me is remembering this is not the end, just a milestone. Ryan goes back in June and August for surgeries and there is no guarantee he’ll be healthy in the mean time. Most likely there will be bumps in the road just as there have been thus far. But for now, we will revel in the idea that home is just a few days away and I’ll be rocking my baby in his nursery instead of his hospital room.
(c) 2016 Leighann Marquiss
Comments (13)
This is so amazing, and we are so happy for you and your family! Do you need any baby clothes? Or anything? I have A LOT of things left over from Alex, and he just turned 9 months.
~Mara Smith
Oh My goodness! I cam sendign your package tomorrow morning adn will see about overnighting it…. it may not make it for his home coming! I will email you when it is off.
I am reveling there with you!! Ryan is truly a miracle and is a witness to God’s love!
YAYYYYYY home!!
That is wonderful news!! I’m so happy for ya’ll. I know you have to be excited and nervous all at the same time. I’ll be praying that things go smoothly for you all. Yay!!!
hip hip hooray!!!
SQUEEEEEEEEEEEEEEEEEEEEEEE! I know we’ve talked about this, but it’s still so exciting.
Oh my…I don’t even know what to say! We serve an awesome God! We’ll be praying for a safe and easy transition to home! Yeah!
WOW! I am so excited for you and Ryan. Guess I better come down with some of my clothes.
OH YES! You can all do this! Tuesday is so close, but I have faith in you and your family!
Wow…. so close. Even as close as TOMORROW!!!! How very cool is that. Are you ready mama??? Im so proud of you Ryan!!! You show them buddy.
God Bless.
What wonderful news! We will be praying for everything to go smoothly…
Praise God, he continues to provide and astound. Amazing praying for all of you and that Ryan will continue to nurse well, grow and just continue to be miraculous.
Thank the Lord!! So wonderful and scary at the same time. I will definitely pray for peace for you and good health for Ryan.