"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."
--Jeremiah 29:11

Tuesday, August 18, 2009

Information Gathering Day

Today has been very informative, yet a bit overwhelming. A nurse practitioner from U of M cardiology called and went over the "what to expect" stuff for the cath and pre-op day on 8/24. Turns out, they will be admitting him Monday night and it is possible that he would be inpatient up until his surgery on Thursday, 8/27. As she put it, they are going to "stress him" a lot during the cath and EP study so it all depends how he handles it. We will show up Monday morning at 10:30 am for his chest x-ray and EKG. We'll also talk to the anesthesiologist at that time. Then at noon he'll go into the cath lab for what they expect to be about a 4-6 hour length of time. They may go ahead and ablate while they are in there if they feel they can. That would be ideal because it would shorten his time on bypass during surgery on Thursday. After that's done, he'll go to the recovery room for an hour and then be admitted to 5E, the general care floor (assuming he's okay) for the night and the plan would be to get a "pass" or be discharged Tuesday morning. If they feel like they need to tweak him a bit more before surgery, they may keep him until Thursday. I have to admit, during our talk, I got pretty scared at some of the things she mentioned. She said that some kids, following valve surgery, have high pressures in the lungs and need to be on a ventilator for several weeks. She said that this might be another marathon stay for us. Ouch. Luckily, we just got off the phone with Dr. Bove and he made us feel a lot better. His goal is to fix the mitral valve the absolute best he possibly can to where it is leaking no more than a mild amount. If that happens, it will take a lot of heat off the aortic valve and should help Connie out considerably. He feels the mitral has the best chance of being repaired and if he ends up having to replace it with a mechanical valve, he may go ahead and replace the aortic too. Remember, a mechanical valve would mean a lifetime of coumadin (blood thinners). He stressed that this is his last resort. He is a very conservative physician when it comes to valves because once you replace them, you can never go back and put the old one back in. You have a lifetime of replacements. If you repair it and the repair isn't good or the valve isn't handling the repair well, you can always reoperate and replace at that time, but you can't ever take back a replacement. He said he'll go ahead and take a look at the conduit while he's in there and if it looks like it's near the end of it's life, he'll replace that too. He said, "If it's not broken, we won't fix it." He said he doesn't estimate that he'll be on bypass anywhere near the 5.5 hours he was on it for the Double Switch. There is so much more that had to be done that time so this time he doesn't foresee that. We asked him to compare the risks vs. the risks with the DS and he said the overall risk is less, but it is still a "very major operation", especially given the complexity of Conway's case. It carries with it all the normal risks associated with open heart surgery: organ damage, seizure, stroke, bleeding, death, etc. He said that the measure of whether or not this surgery is successful is for his Left Ventricle (the pumping ventricle) function to improve and we should give it six months post op to tell if that has happened. He said he believes we are far away from talk of transplantation and he could possibly even reoperate later down the road to keep trying to work with the heart he's got to improve that function. As far as length of time on the vent (breathing machine), he said he expects a few days following surgery and as far as the time he'll be in the hospital, well that totally depends on what they have to do. If all goes off without a hitch and he gets his valves repaired and not replaced, it could be as short as ten days! If they have to replace with a mechanical valve, that will add to the time. Other things can add to the time as well as complications (which our boy is known for!). He's already stopped his amiodarone and tomorrow is his last day of Coumadin. Then on Sunday night, he's not to take his Enalapril and we're holding his Digoxin and Enalapril on Monday morning.
Specific prayers, aside from having safe travels to Michigan on Saturday, include praying that he will handle the cath well and be able to get out of the hospital on Tuesday morning so he can see some sights (perhaps the petting zoo or teddy bear museum) before Thursday. Also, that Dr. Bove will be able to repair the valves Connie has and that his LV function will bounce back quickly.

If this is too hard to understand, sorry. I tried to simplify it as much as I could since I've been hearing so much lately that my updates are too medical-ease sounding! I guess that's what happens to you after you spend two years talking to doctors and nurses on an almost weekly or daily basis. If you want, you can ask Greg as my mom thinks he explains things better!

4 comments:

Lisa said...

Erin,

I'm thinking of you guys as you prepare to make this trip and face the unknown once again. I understand your need to write it all out. I'm sure it is overwhelming and medical sounding for those that don't live it. Unfortunately, I understand all the details.

Keep us updated when you can and know that prayers are going up for Connie and your family from Tennessee~

stove said...

I'll be praying for you guys. I know Conway (like my Lily) likes to take the long way home, but hopefully this time will be short and uncomplicated! Dr. Bove is a genius and he couldn't be in better hands. Keep us posted!

Heart Hugs,

Steph (L-TGA group)

Anonymous said...

Sounds really scary for you guys. I used to volunteer in the cardiac unit of the U of M children's hospital (not sure if it's still called Motts or not but it was while I was there) and you couldn't be in a better place. The doctors and nurses are phenomenal and great at what they do! They see so many kids and they know just what they are doing! Good luck with everything! (you probably have no idea who I am but i found your blog on BBC)

Dan said...

Hi guys,
Thanks for all the updates! I've been praying for Conway and the both of you. God is SO good. He always takes care of us. Glad to hear that things went so well.
Jean