Today turned out to be not what we expected!!! We went in for her normal Monday clinic. After I talked to the docs about Abby being more tired and the other little problems she's been having, and after they listened to her heart and heard a gallop they decided to run some more tests. They scheduled her for a chest xray, an echo(this wasn't supposed to be done for 2 more weeks), and the big one-her cath test surgery which they did the second day we were here (they weren't going to do this until August). So this is how our day went from there:
-Defibrillator monitoring-they told us that her pacemaker has been pacing her about 40% of the time. this means that her pulse drops below 50 bpm 40% of the time. But she hasn't had any major shocks.
-Vitals-Remember when we wanted her to gain weight?? well, now she had gained so much weight so fast that they decided she's been retaining fluid....not a good sign.
-Chest xray-things looked okay, but they found a little more fluid in the lungs
-Blood draw-They weren't going to do this today, because she was going to get immunizations, but had to because of her surgery. Abby was a little ticked, but at least they only poked her once.
- Immunizations-She had to get 3 more shots in her arms. She was more worried about this than anything else so far! But she was tough.
-Echocardiogram-Abby loves this, she says it's totally relaxing. We got to watch Over the Hedge, one of our favorite movies. While she was getting this done, I visited the medicaid office in PCMC and turned in the last of my papers!!! Keep your fingers crossed.
-Visit from child life. They talked to Abby about the surgery and explained that they put a couple of little tubes up through her groin to measure the output of her heart. She would be under anethesia for this, but it would help us understand a lot more about what was going on.
-Cath test surgery- The actual surgery only took about 2 hours, but we had to wait forever for an anesthesiologist. They found out that her cardiac output is only 1.6, it should be 2.5. This explains why she's been so tired. They said that at least we caught it before she arrested again........scary!!!
-After the recovery in the pacu (post anasthesia care unit) and a bed opened up, we moved to the cicu (cardiac intensive care unit). That's where we finally are now.....only 12 hours after checking in this morning. It's been a long day!!!!
Because of the numbers they saw in the cath lab, she is now listed as a status 1A. This is really good news, because it the highest on the list for a transplant, but it's not good news because it means her heart has gotten sicker and she's not doing so great now. She's really sleepy tonight because of her long day, but she still has lots to do tonight. They started her on a medication called milrinone. This helps her heart function better. It's kind of scary because it can cause arrhythmias and lower her blood pressure at first. That's why we have to stay in the ICU, she needs to be closely monitored all night. But because she's started on this, we got to move to status 1A. She also is going to get a picc line in tonight still. This is just like an IV that can stay in. She needs this to administer the milrinone. We will probably be here at PCMC for about a week, or until they've figured out how the milrinone is working. I just think it would be easier to get just get her heart while we are here and ready!!! Now that she is a 1A, it could happen fast....we really could still be home by Christmas. I've felt all along it was going to happen in July, let's just hope I was right.
Just for a laugh....I failed the pager test today. They gave me another pager to let us know when her surgery was done. I was sporting 2 pagers for a while! When it went off, I freaked! I just started looking around trying to find what was beeping. Britt said, "Mom, it's your pager!!!" Then I didn't know which one, I was panicking a little. Then when I realized what was going on, I couldn't remember where we were supposed to go! So Britt and I wandered around a while, we lost Abby! We went to the ICU, we looked where she had the surgery, we couldn't find her. So, we just went back to the waiting room. Luckily, we saw them wheeling her down the hall, so I took off running for her. I decided I'm a freak. I obviously don't do well under pressure. We just better get her heart while we're in the hospital already.
I'm a little scared for tonight. Please pray for a peaceful night and for everything to go as planned, they've already increased her oxygen to 2 Liters, because she's having a harder time breathing. I'll be watching those monitors all night! I will post again tomorrow, hopefully things will be more stable then and I'll know more.