Well, our consultation appointment is tomorrow. We are going to meet with the surgeon at the Children's Hospital and discuss Dylan's heart surgery. This is the surgery to correct his AV canal defect. We will also be scheduling the pre-op date as well as the surgery date. Wow. Just writing that down made my stomach twist.
I know that I should walk in there with a whole list of questions...the problem is that I can't even begin to think of what to ask. If you are reading this and have some ideas for me, would you mind leaving them in the comment section? I think my brain is refusing to cooperate with me when it comes to this surgery stuff. Denial much?
Anyway - thanks for reading! We appreciate and love you all SO much.
7 comments:
A few questions; Don't feel like you can't ask alot of questions! That is the point of the Consult.
-Length of surgery?
-Updates during surgery,( we want lots of them) :)
-What to expect directly after surgery, later that night, next day, months, years later?
-Can this problem come back/ or need re-repair in the future?
-How do they keep his pain level down, but keep him safe re: pain meds?
- Breast feeding, when can you start, need for pumping ect..
-Restrictions for him as far a PT/OT, activity level, for how long if any?
- How long before he needs to follow up with Cardiology, will he continue to follow up with them?
- How long will he be in the hospital?
- Can you stay there overnight?
- Will you be changing dressings, or anything you will need instructions on?
- Will he be on meds after surgery? What are they for, how long will he be on them? Instructions on them.
- Things to watch out for keep in mind post- op?
- Need for blood donations? we mentioned that earlier.
Don't worry too much Laur, if that is possible. I love you!
How long will the surgery last?
Will someone come out and give us routine updates?
How soon after the surgery can we see him?
How long will he be in ICU?
How long will he be in the hospital?
How long until he can drink breast milk?
How long until he can breast feed?
When can I room in with him?
What is the expected recovery time?
Love you sweetie!
Stay positive and strong Laurie!!!. Your mother instinct will guide you and depending on how the appointment goes you will be asking the right questions. Trust that you will get all the right information you need to know. If possible, please try to schedule dates for everything, on or after 10/15. I will keep you in my thoughts and will be sending you positives energies. Everything is going to be OK ~
Gosh, Laurie, for some reason I've had it in my head that your consult was next Friday :/ The suggestions for questions already posted are great; I can't really think of anything more to add. You guys will be in my thoughts (as you always are!).
No advice that hasn't been mentioned, just wanted to send you a hug.
When we went though this, the doctors and nurses were VERY good about keeping us informed both during and after the surgery, explaining the procedure, the medicines, the tubes, as well as Matthew's progress and any set-backs. Every kiddo is a little bit different, and doctors can't predict the future, so don't get frustrated if you hear a lot of generalizations at this appointment. You'll probably hear things like:
-The surgery generally takes about 6 hours, from the time you kiss him and send him off, to the time you can see him again in the PICU. They really try to keep the time he is actually on the heart/lung machine to under 2 hours.
-As far as post-op meds go, each kid will be different, depending on how healthy they are going into surgery, and how well they do after. Matthew was beginning to have some mild heart failure at the time of his surgery, so he was on Lasix beforehand. After surgery he was on Lasix and Digoxin for awhile, but he's off all his meds now.
-They are really good about controlling pain. The nurses actually have more to do with this than the doctors. But, we learned not to assume he's getting his "as needed" medicines. Don't be afraid to ask the nurses when his last dose was, and to ask that he get Tylenol every 4 hours round-the-clock regardless of whether or not he appears uncomfortable.
-My husband says, "Don't be afraid to ask about hospital perks. Sometimes they give you meal vouchers, parking discounts, etc! Also, scope out all the lounges where there is coffee, snacks and internet available." We had a laptop in the hospital, which was really nice - the hospital had wireless access, and we could also watch movies, etc.
But, that's all stuff that you will deal with when and if you need to. Don't be surprised if tomorrow's appointment is more about getting Dylan READY for surgery, and less about the surgery itself.
They wanted to make sure Matthew was as healthy as possible going into the surgery. For him, this meant placing an NG tube (which he had needed off-and-on anyway) to get enough calories in him to "beef him up." Statistically, bigger babies do better, so they wanted him bigger.
We had to be "germ-a-phobes" for weeks prior to the surgery. Any little respiratory bug could mean surgery delay, and for Matthew, a delay would not have been good as his heart was beginning to fail. I was told to not even go to the Grocery store with him - or if I HAD to, to keep him covered up and not let anyone coo over him. My hands were raw from hand sanitizer, and we had to keep all visitors away. I relied on good friends to do my errands for me - good friends who understood that they couldn't cuddle Matthew for awhile. My husband got sick while working out of town, and I didn't let him come home for 3 weeks! You have to become kind of a "mama bear." It was hard, but worth it! Matthew was at his healthiest going into the surgery, and I really think that helped him recover so quickly. We were in the hospital less than a week!
If you have any questions, or just want to talk about all of this, PLEASE contact me. My email is vawterski@gmail.com. We've been through this, and we know how hard it is! My husband is a physician, and I am a PA, so we also have a pretty good grasp of the "medical stuff" with the advantage of being on the patient/parent side of it, too. Good luck with everything, and we'll keep you in our prayers.
Amy and Aaron Vawter
(baby Matthew's mommy and daddy)
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