Riding a Roller Coaster

So last week we talked about Q's surgery taking place anytime in the next 2-4 weeks. I truly spent all weekend coming to grips with that development and thought I had made my peace that it was happening just a little sooner than we anticipated.

Then of course, the phone rings Monday morning. It's our cardiologist -- I'm thinking he's going to let me know who is assigned to her surgery and what the date will be. But noooo... instead I'm told at this time, there will be no surgery, at least not for a few more months (hopefully).

When the surgeons at TCH met on Monday morning to discuss Q's case, they did not deem her pulmonary artery and branches large enough to be able to perform a full repair. If they just did a partial repair, she would be left with an "artificial" artery that would have to be replaced in her elementary school years and then again when she was a teenager -- & then perhaps as an adult. So after looking at her most recent echo and her saturation levels (somewhere in the mid 80s), they really feel it's in her best interest to continue to wait and give her a chance to grow -- and hopefully the artery will grow along with her.

There are other options for her in case her stats start to drop again - primarily a shunt in her PA or even putting a catheter with a balloon to open up the artery. However, those are for the "just in cases". Either of those could open up her PA too much and allow too much blood flow to her lungs which would be very dangerous for her. If that were the case, it could be managed with medication until the time she became large enough to have the full repair.

At this point, the surgeons would really like for her to be at least 16lbs for the operation - so we are looking at quite a bit of time down the line, perhaps another 4-6 months at least. Again we return to limbo and just are in "watchful waiting" - monitoring her stats and weight regularly and just wait until "go time".

 My emotions are mixed through this whole thing. I trust the doctors and I know they ultimately know what is best for my little girl. However, I did have a measure of excitement for Quinn, knowing once we got beyond the proposed surgery, she could be like any other baby. But obviously, knowing now that a surgery at this time would force multiple other surgeries, that's obviously not the best road for her.

So for now, we continue to keep Q somewhat shielded --- no grocery store trips, church nurseries, or having lots of visitors. It would be devestating for her if she got some sort of infection and would speed up the entire process -- not what we want at this time. We are praying that our insurance will cover the RSV shots for both Q & R to give an added layer of protection, and of course Matt will get his flu shot to prevent bringing home any extra germs (unfortunately I cannot receive a flu shot due to my allergy to eggs, but seeing as how most of my daily contact is with the mailbox and my computer, hopefully I don't bring too much of an added risk!)

Thank you all for your continued prayers for Q. We ask that you specifically pray for her levels to remain stable, that she will continue to grow, that her feedings will improve, that insurance would cover the very expensive RSV shots, and that above all else, that Matt & I can provide as much of a normal "babyhood" as possible in the midst of all these procedures, dr appts, tests, and monitoring.

In His Mighty Hands,
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Anonymous said...

Wow...thanks so much for the update. Just looking at the pictures you post you would never know she was sick. I knew she was going to need surgery but, didn't know when. It sounds like the doctors have a plan and I know they'll keep her best interest at heart. Keep the faith and he will give you all the strength to overcome this challenge and I'll continue to flood the heavens with prayers for Quinn and her family. Love you guys.

Leslie Stanga said...

I'm sorry that you have to continue on this emotional roller coaster;it must be very hard. I will pray for the things you mentioned. I'm thinking that God must be guiding the doctors to do what He knows is best for Quinn. Hang in there!