Finally a Light of Hope

Katie's respiratory therapist came in tonight for her nebulizer treatment. They take the oxygen tubes out of her nose for the treatments and the therapist noticed that Katie was doing really well without the oxygen during her treatment. She turned the oxygen machine down a little more, but also suggested we keep the oxygen tubes out of her nose for a while to see how she does.

She did OK for about 10 minutes. Not great. Not well enough for her to go home like that, but she was OK. After 10 minutes, her oxygen levels dropped so the nurse came in to check her foot monitor (that monitors the oxygen levels) and after talking to her for a while she agreed it would be OK to take the oxygen out for a while and see how Katie does without it. She's been off the oxygen for 45 minutes so far and she's doing OK. Again could be better, but not bad enough to feel the need to put the oxygen tubes back in. They even said when she goes home, her respirations won't be normal. They'll still be on the high end of normal, but good enough that she'll be fine with the meds and nebulizer treatments at home.

We've been really frustrated today with the on call doctor's report this morning and felt like he was not being aggressive enough with his recommendations. She's been doing great WITH the oxygen and 4 days to wean sounded like a really long time. He suggested that maybe it's RSV, but they swabbed for that when she came in on Monday and determined that it is definitely not RSV and that it IS pneumonia. We saw the pneumonia on the x-ray. So that right there let us know that he didn't even check her chart to see what all was done with her or what specifically is going on with her before making assumptions like that!

Andy's been saying for a day or 2 he thinks we should at least TRY to take her off the oxygen completely. I have to admit, that thought made me nervous and I thought that was a little to ambitious. But his reasoning makes sense... anybody who is couped up in bed for days will naturally start to feel bad. Even when I'm well and get lazy over summer break and lay around too much, I start to feel a little sick. Another point he had was that with the machines, she didn't NEED to work. Kind of like working out... if you don't work out regularly, your muscles get weaker. Makes sense, right?

Well we're on 45 minutes now without oxygen. She's sleeping so her oxygen levels and respirations (breaths per minute) should naturally go down while she's asleep. Her oxygen is at 94 (normal is 90-100) and her respirations are staying right around 40 (give or take 2-3 on either side.) Yes, when she's totally well, those numbers should probably be 95 and above for oxygen and in the 20s or lower 30s for respiration. But as long as the oxygen is in the 90s and respirations are around 40 or below for 24 hours without oxygen, I think that's what she needs to be able to go home!

Since she could be doing a little better while sleeping, we'll probably put the oxygen tubes back in when she goes to bed for good tonight and try again some more tomorrow. I still think we'll be here a couple of more days, but I feel very hopeful that we could finish weaning her off the oxygen tomorrow, monitor her for 24 hours and be outta here sometime on Saturday!

Thank you all for your encouraging words and most importantly your prayers. Please keep praying that she will continue to do well (and improve) without oxygen over the next couple of days so we can be home on Saturday or Sunday at least.