Friday, August 27, 2010

Heading Home

Harmonee was able to come home today. The question still remains as to why Harm wasn't urinating. It was a quick and easy hospital stay with half as many cords as she has always had. Of course, her first IV was quickly pulled out and another one was placed just hours before leaving. But all in all it wasn't such a bad stay.

3 Months Post Transplant

Wednesday, August 25, 2010

Here we go AGAIN.

I have never been one to be superstitious. Nor to look at Friday the 13th and think of how much "bad luck" that day may bring. Or the number '7' and think something good/bad will come of it. But things change when you are a hospital mom. Weather its different symptoms, color of stool, urine, skin, a bump or even down to the smallest detail at clinic, a doctor not being there, or even something out of place. ANYTHING of the sorts that can happen. And in Harmonees case, if it CAN happen, it WILL happen.

Yesterday at liver clinic I had a strange feeling. Maybe it was just that Harm has been out of the hospital two months now! I started thinking about this while waiting to go back to see the doctors. Harmonee was two months old when she was diagnosed. As was it two months after her Kasai that she was put on the transplant list, and two months after being put on the transplant list that her body sent her into the downwards spiral of multiple organ failure. It was also two months from time of admittance to the time of discharge post transplant. And NOW two months prior to all of that and NOTHING major has hit us.

We were called back into the doctors waiting rooms. We walked into our room, and I realized immediately that this was the room we had clinic in the day before Harmonee was admitted into the PICU. Of course I was told the week before that Dr. Book wouldn't be here, but neither was she there that day; the day before the crash, before the PICU, the DNR, the multiple organ failure, and the bloody days that followed. I then realized that Harmonee was wearing the same purple bow as that day. When I sat her on the exam table I got that strange eerie feeling that you get when you feel like something bad is going to happen. Or perhaps that just being paranoid because of the symbolism's. My mind kept flashing back to that day though. Harmonee laying there on the table, pale, limp, breathing a bit to hard, fussy, and having thrown up all over the table fell into that deep sleep she didn't wake up from for a month after.

The nurses, and the PA came to look at Harmonee. Of course a few questions raised as to if she was feeling well or not. But all checked out alright, perfect liver labs, proteins, vitamins, so on and so forth, and we were on our way home.

Today we woke up to a not so happy Harmonee. Not a Harmonee laying on the living room floor with blood soaking out of her diaper, mouth, nose, covering the ground around her. Not a lifeless Harmonee, but most certainly a sick Harmonee. This I didn't thing much of. Kids get sick, and yes, especially prograf using kids. Since there was no fever, I figured a day of rest would do Harmonee some good. Of course at liver clinic the day before, the subject of Harmonee not urinating had come up. Harmonee had no wet diaper. The day went by, and no urine. So, as most mothers would do, I did what I had to, I called the Queens office....

Here we go AGAIN.
Of course this time around NOT for her liver. But for her KIDNEYS. She has stopped urinating. The nurses gave her a straight cath for a urine specimen, making Harmonee urinate all of the urine that was storing in her poor little, overly explanded bladder. Minutes later, Harmonee is asleep. But not without leaving everyone running for their money... as usual. And the horrifying  thought in my mind... I am a LIVER mom... NOT a KIDNEY mom, and personally, I really, REALLY, don't want to be both.