Rebekah's oxygen was turned down to 0.2 liters for a while today, but turned back up to 0.25 this afternoon. When Rebekah is just resting or still, she does well, but as soon as she gets excited or active for a period of time, she seems to need more oxygen support. She was starting to breathe more rapidly and her breathing was a bit more labored, so we gave her a little more help in that department.
Although Rebekah has been coughing some today, it is noticeably less frequent than yesterday. It is still a "tight" cough that sounds like she's struggling to breathe during her coughing spells, but it's not the forceful, not breathing during the episode coughing that she was having yesterday. Dr. Darby is adding a new medication called Pulmicort to our nebulizer treatments today. It is going to be a long-term (probably 2-3 months) medication to help keep Rebekah's airways open. It should make Rebekah's colds a bit more manageable from home and not result in as many hospital trips - we hope!
Dr. Darby is also considering referring Rebekah to the pediatric pulmonologist here in Greenville. It is something that we have discussed with Dr. DeMoss (Rebekah's pediatrician) before but in the end we decided that her oxygen levels were caused by her cardiac function, not lung function. However, because Rebekah has had two fairly major respiratory illnesses in the last four weeks, Dr. Darby feels that she may be better monitored by a pulmonologist. We should know tomorrow what Dr. Darby's decision will be.
Yesterday Dr. Rauniker (cardiology) told us that he had spoken with the scheduling department at MUSC and had been given a tentative date of February 23 for Rebekah's heart catheterization. I say tentative for two reasons. First, we are concerned about Rebekah coming down with yet another respiratory illness in the next four weeks, similar to the scenario we have right now. Obviously, that would postpone the heart cath again. Second, that week and the week following would be the worst two possible weeks as far as Drew's work schedule. We are willing to do a lot of rearranging and rescheduling to accommodate Rebekah's appointments, but there are things happening those two weeks that just cannot be rescheduled. So, we are discussing either moving the heart cath one week earlier than it is currently scheduled, or two weeks later. We will be seeing Dr. Lucas for a routine visit on February 3 (providing we are not still in the hospital!!) and will discuss the date with him. I'm fine either way as long as we can keep Rebekah free from respiratory illness between now and then!
One of the medications Rebekah is on right now is Orapred, an oral steroid to help open up her airways. It is doing a great job of that, but has the miserable side effect of making Rebekah hyper to the point of jittery. At 5:30 in the morning, this is a very miserable side effect! Rebekah has been having a harder time falling asleep and staying asleep since she started the Orapred. We are hoping to see enough improvement in the next couple of days to take Rebekah off of this medication, but please pray for calmness in the meantime!
I'm off to get some supper before Rebekah wakes up. Thank you for all of your continued prayers and encouragement!
Nancy
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