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| Mackenzie |
Three weeks later, we were back at our local hospital with a positive RSV test. Our local hospital does not have a PICU, so we were put in a private room on the peds floor. She received breathing treatments around the clock, but just got worse and worse as the week went on. After five days with lots of treatments, daily chest X-rays and no improvement, she was transferred to a hospital about two hours away that had a PICU. We received a call from her admitting doctor as we were driving there, and I will never forget him telling me that she was going to have to be ventilated to give her lungs a rest and asking "has anyone talked to you about her heart?" Mine sunk.
He told us it was five times that of a normal sized heart and that we had a very sick little girl. After a week in that hospital, with a number of tests and a heart cath complete, he advised us to transfer her to Lucille Packard at Stanford, where he had done his residency and fellowship. When we got there, they seemed to find the situation less dire. They were going to get her stabilized, start her on heart medication and then try to wean her off the IV medication and send her home on oral meds.
I remember doing some research, but being scared of doing much after I found so many of the stories resulting in death. I didn't want to think about her not making it. She was my only child and would be my only child. We went home four weeks after arriving at Lucille Packard. Mackenzie was on four oral medications and we thought we were going to make it for a while on that.
We went back to Stanford for a clinic appointment two weeks later and things seemed to be going well. She started to have some eating issues soon after that appointment. At first, we thought it was just normal baby spit up issues. Then we thought it might be reflux. But, it just kept getting worse and worse. Finally, we ended up in the emergency room once again, three weeks after release. They sent a helicopter from Stanford and we were driving back there again the next morning. This visit was not so optimistic. Mackenzie was in cardiogenic shock and was put on a ventilator again.
After a few days, we were told she wasn't getting any better and the best solution they could offer was placing her on the transplant list. Because of her small size (still under seven pounds at admit), and her blood type (O-) we were told to be prepared for a long wait. We checked into the Ronald McDonald house, found homes for our pets to stay, and made plans to put our things in storage. My husband went to Michigan for his summer work and I stayed at the hospital, dealing with doctors and nurses and a ventilated, sometimes paralyzed (using vecuronium), unstable baby on a daily (and nightly) basis.
As I look back, I can't remember a lot of the specifics of those days, but I saw it as something that had to be done, and I adapted. I was lucky in that I had a lot of family and friends in the area who came and visited regularly. I got along well with the doctors and nurses. It could have been much worse.
After a couple of weeks, there were some problems with the treatments in the PICU and there was talk of having to put Mackenzie on a Berlin Heart. The Berlin Heart was ordered and held on the premises just in case, but the cardiology team was hesitant to put her on it because of her small size. So, she was transferred to the CVICU and after a couple of days, she seemed to be improving and the Berlin Heart did not seem to be necessary.
Two days later, a miracle happened and a heart came! She had been on the list for just under a month and there was already a heart! The transplant was done, and she did very well. We were sent to the "step down" floor about three weeks after the operation and we got to take her to the Ronald McDonald House with us after only a month. She then had her first biopsy and it came back a 3, and we were back in the hospital on the step down floor, getting IV steroid treatments for rejection. The next biopsy, two weeks later came back a 1. It was consistently a 1 and we got to come home to Chico in the middle of October.
We had to find a new house, get our stuff out of storage, etc. But, it's been great. Mackenzie had a brush with rejection, with a 3 on a biopsy two weeks ago. We spent the weekend in the hospital getting steroid treatments and had another biopsy yesterday that came back a 1A. So relieved!
She is doing well with the medications. She eats on her own, without any tubes. She is still a bit on the small side (less than 3% in both weight and height), but she is healthy, happy and seems to be developing in to quite a little girl!
