July 1 and 2, 2009 Updates

6 days post surgery...

Wednesday was such a busy day that I didn’t have the chance to write and now things are moving so quickly here that it is hard to keep up.

Taylor has made great progress since yesterday afternoon. Her breathing tube was removed and she was transitioned to a high humidity nasal canula with some oxygen support (40-60%). She remained sedated because every time she woke up she struggled with her tubes and lines and seemed very agitated. However, during the night all of her drip medications were stopped and her feedings increased. This morning when we arrived she had been moved to a private room in PICU from the cardiac corner room which was wide open. Also her catheter had been removed and other monitoring devices which tracked her brain and kidney function.
Jason and I listened in on rounds this morning and the plan for the day is to continue to “deaccessorize”. This morning her arterial line was removed as well as her central line in her groin. Now she just has one regular IV line, a feeding tube and the nasal canula support. She has been awake and alert and moving around without much discomfort. Taylor is still groggy but the goal is to get her fully awake so she will not be receiving any more sedatives only pain meds when she seems to be in pain. She is also receiving some Heparin (blood thinner) because she has some swelling and a small clot in her left leg where the central line was. This does not seem to be a major concern and is expected to break up and heal on its own.

She is on some heavy meds to wean her off of the Fentanol (painkiller/sedative) including Methadone. She will be stepped down off of it over several days and may actually be sent home on it as well to finish the protocol. We have been told that this might cause her some insomnia or possibly keep her groggy and with limited appetite for a few days. Good to know!
All in all a great two days for Taylor. Her color is great and she has even started talking a bit again now that the tube is out. The doctors are pleased with her heart performance and now that her heart rate is steadily above 120 they plan to remove the pacemaker as well. Yippee!
We also met with the feeding team this morning and discussed how to transition her back to the bottle and solids. Once she is off the nasal canula she can start to take a bottle. A speech consult has been requested but since Taylor already receives speech through early intervention and Jason and I have already been dealing with her feeding issues (thickened formula and food) the team wrote in her chart to consult with us about her needs. Yippee! That means she won’t be held back from taking a bottle until Monday when the speech clinician can see her. Everyone here seems to be gearing up for the holiday weekend (which starts tomorrow!) and we are hoping that we are moving closer to the door – maybe to “step down care” on the regular pediatric ward.

Not sure when this will get posted as there is no wireless connection today at the hospital…so no email access, etc.

We look forward to sharing more news soon. As always, thank you for your continued prayers for Taylor's recovery.