Made of Gray

It's Gone

Holly D Gray6 Comments

Our GI visit went well yesterday. A quick check of Caleigh's stool showed no signs of blood. Then we talked about the positive fluid balance and since Caleigh has been extremely consistant over the last month there really isn't anything to worry about. If you add up drool, sweat, and respirations then the "invisibles" get us closer to the input number. No worries.

Caleigh doesn't need another vitamin/mineral panel for another 3 months and weekly labs have been canceled.

The next step in Caleigh's feeding progress will be to slowly go up to 50ml an hour and then turn off her feeds for 2 hours a day. 2 hours without a tube is a start.

Then we talked about the central line. Do we need it? Well, no..actually. It's more of a risk to keep the line just because we "may" need to draw blood for some reason. It's more of a risk to keep line "just in case" something happens. If we keep it then Caleigh could end up with an blood infection, in the hospital, her bowels would shut down due to the stress on her body and then she would have to start all over with TPN from square one. Not worth it.

So, this morning we had the first appointment at our surgeon's office and he removed the line. The central line removal was more painful for Caleigh this time around. The cuff came out with the line which sometimes happens, but made it more painful. Caleigh cried a lot and I felt terrible for her. Our surgeon also had to use silver nitrate on some granulation tissue that had formed around the line. It hurt Caleigh pretty bad because it basically burns the tissue away. The skin where the dressing and tape covered the line is completely tore up. Poor baby's skin is so sensitive. Hopefully getting some air on the skin will help the healing. She calmed down fairly quickly after the main event was done. We chatted for a little while and then headed home.

Caleigh told us a few times on her iPad that her chest hurt. It's already really bruised. We gave her a dose of Motrin and that seemed to help. We haven't done any heavy therapy today and have tried to keep her off her chest.

Swimming orders were to wait one day and then go for it. So this afternoon I went and bought Caleigh a bathing suit. Maybe she will get to do some Fourth of July swimming if she's up to it.

The first time Caleigh had her line removed I think I was naive to think she would never need TPN again. Maybe it was a positive outlook...who knows? This time around we pray it is the last time, but I won't be so green to think it could never happen again. Cautiously positive. I do know that 5 months with a central line was much easier than the first 18 months with a central line. Maybe each time and each year the time will be shorter, the need will be less.

Overall, today was a good day.

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