Still in Rochester...

Well, true to form, Payton likes to keep us on our toes... We were packing up and getting ready to drive back to Eau Claire last night (friday), and Payton started to wimper. So I put her on the bed to check her diaper, and shortly after she went into what seemed to me like a seizure (about 5:45 pm). It scared me to death, and fortunately we were still here. We managed to get ahold of the peds cardiologist on call and told him what had happened, and he wanted us to take her to the ER to be checked. After talking with cardiology they admitted her into the PICU (pediatric intensive care unit). They were checking her over last night when Aaron and I left at about 10. We had been at the house a half hour when they called us to come back because she had gone into an V-Tach (ventricular tachicardia) arhythmia. They managed to get an arterial line in but wanted to get a veinus line in as well to administer the heart meds to help control the arrhythmia. It took a few hours to find a vein, and in the midst of it they sedated her and ended up intubating her so they could keep her still and not loose the line. Aaron and I slept in a sleeping room here on the unit from about 12:15-5:15 and then checked on her again and went back to the house to sleep a few more hours. She's doing better today. She's been keeping her heart at a normal rhythm most of the time. They will keep her here to watch her. The cardiologist said on Mon. they'll talk through more what next steps need to be taken which comes as a result of the echocardiogram she had on Wed.

Her first surgery they widened her aorta at the arch as it comes out of the heart, but at the starting point of the aorta in her heart it's narrow. They couldn't repair it becuase she was so small. Well, the echo showed that that spot had worsened and is potentially more narrow. We met with her cardiologist on Thurs. morning and they wanted to wait as long as possible to address it because the bigger she is the "easier" it is to operate on. They're now not sure if her V-Tach episode last night is related to the narrowing of the artery in her heart, but it seems likely. The original plan was to come back when she's 6 months to do a heart catheter - they go up through her leg artery to look at her heart. This will give them a more accurate picture of what her heart is really doing - more so than the echo will. Then we were to meet with the cardiologist and her surgeon (same one that did the first surgery) to see what needed to be done next. I think now they'll be looking to see if they need to up the date for the heart catheter and go from there. It's scary because this is a very serious surgery, and of the 4 things they were watching on her heart, this was the most serious - "tricky" to fix.

Also, yesterday afternoon we met with genetics. When she was discharged in June they were leaning toward her having something called CHARGE syndrome. I looked it up this summer and agreed that it definitely seemed to fit. So we talked with the doctor for awhile yesterday who confiremed it. CHARGE is a clinical diagnosis, though there is a test for it, but it's only 60-70% accurate. Probably the best place I found that explains what Charge is is chargesyndrome.org, and there's a link "about Charge" that explains it. As she continues to grow and develop we'll continue to learn what applies to her and what doesn't. No child has every single symptom, and Payton doesn't either. Overall, this wasn't a surprise to us; we just wanted to wait for confirmation from the doctor before we made it public knowledge.

Needless to say it's been a long few days. To put it mildly, it's a bummer to see Payton intubated with lines and swollen from fluids. To have her home, we almost "forget" all that needs to be addressed, and this week was a big reminder of the long road we have in front of us. We continue to ask for your prayers, especially as the next few days will probably reveal more regarding the next steps for her heart. We'll keep you posted.
Much love, The Joneses