Sunday, May 15, 2011

Sunday, May 15, 2011 11:50 AM

As with anything Elizabeth has shown us again, there will always be new issues to overcome. Last week with all of her breathing issues an echo was ordered to check her heart, and we were told that it appeared her heart was working too hard. Cardiology was consulted and requested that she wear a halter monitor for 24 hours to monitor her heart to check for problems. And of course there is. Elizabeth has an abnormal rythym which causes her heart to beat to fast, and could eventually cause her heart to tire out. So she has been started on a beta blocker medication. That basically slows her heart down so that it doesnt over work itself. She gets this medicine every 8 hours. The cardiologist told us that this is one of the most common arrhythmias and that it "shouldn't" affect anything. She will just have to take medicine and be followed by cardiology. She said most of the time if the problem is found before 1 year of age the kids outgrow it, but since we are finding it later that it may be something she will always have. But then we question if there was so much focus on her bad lungs and pulmonary hypertension, that this may have been missed earlier on and she may still be able to outgrow.  After her 5th dose of the medicine which was yesterday, she was put on the halter monitor again for 24 hours to watch how the medicine has helped. So far it seems to be making a big difference, her heart rate has slowed down about 20 bpm and she seems a little more comfortable.
She has been much more stable as far as her breathing, and is back down to 35% oxygen and doing well on it. They have resumed pressure support trials again. She did 2 separate 4 hour trials yesterday. And today we are trying for an 8-10 hour trial, with a few 1 hour trials on the trach collar.  Of course her PICC line again has stopped working, so she is having to get stuck for blood draws. So we are waiting to see what the plan is for that. She is off ALL IV medications, so really they dont need a line for meds, but a line will prevent her from getting stuck multiple times a day.  She is still on the blood thinners for the clots she had before transplant, and we are hoping that she will be able to stop getting those injections once her line gets pulled. So there are pros and cons to all of this.
And of course, the focus of the coming week is to see how much progress Elizabeth can make and to start discussing our discharge plan. There is a high possibility that we will be leaving the hospital with a home vent/trach and require in home nursing care again....in a 1 bed room apartment (FUN TIMES!). And we would continue the process of getting her weaned from the vent/trach in an outpatient status. We still aren't sure how we feel about that. Part of us is ready to get out of here, and to get her away from the germy hospital. But then part of us doesn't want to leave until she is free of all of these things. We have dealt with the home vent/trach/nursing care before, and know we can do it, but we just want so much for this trip out to be normal.  Needless to say the recovery process has not been as quick as we had hoped, but we are still hopeful that either way we can get rid of all of this equipment by time we go HOME HOME. The plan for this week is also to start transitioning Elizabeth's tube feeding so that she can do bolus feeds during the day and continuous feeds at night VS the continuous feeding she has required since Novemeber. By doing this she wont be hooked up to a feeding pump 24/7. Until we can try to get her to eat by mouth. We are very hopeful that this works, If we get rid of the trach/vent we dont want her tied down to a feeding pump all the time either.

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