Mommy2Alysa
New member
Sorry it took so long to get back to you all. Alysa has been in the hospital for just over a week now and is still showing her oxygen levels at about 93-94. They have had to use oxygen on her a few times but for the most part she is doing really well.
They don't think she has pneumonia. They are now thinking it was mucus blocks (which can look the same on x-ray?) but because of her breathing issues and oxygen level they are glad they admitted her as it would have been the next step anyway because it looks like her antibiotics (tobramycin at home along with the 3 (including Tobra) in hospital) isn't doing the trick,.
They are thinking of putting her pulmozyme and TOBI (as long as my husband's benefits covers it which it looks like it does - thank gosh!) and they should be starting that on Monday before we go home on Wednesday.
We saw the ENT specialist and he says she has some blockages up there (no polyps yet) and has put her on a steroid nasal spray. We are going to get a CT scan done (when we do her lungs) and if the spray isn't working they will operate in September.
Other then all that she is doing really well. She is busy playing doctor with her bears and giving her babies bronchoscopys (she had one done in June.. a three year should NOT know what those are by the way.. poor thing) and she is busy calling the nurses "nerds" (she cant say it properly). It's cute, every time her IV beeps (she has a PICC line in case you are wondering) she sits up in bed and says "oh nerrrrrds... I'm beeping" and hten says it a little louder if they don't come in a few minutes.
They all love her there and she seems happy even though she is stuck in there but they are letting her leave the hospital for a few hours between her antibiotics.
So that's the update. OH and they did a swab on Kiana and she is fine. She is at grandma's about an hour away and I have seen her for about an hour since Alysa was admitted. Breaks my heart.
They don't think she has pneumonia. They are now thinking it was mucus blocks (which can look the same on x-ray?) but because of her breathing issues and oxygen level they are glad they admitted her as it would have been the next step anyway because it looks like her antibiotics (tobramycin at home along with the 3 (including Tobra) in hospital) isn't doing the trick,.
They are thinking of putting her pulmozyme and TOBI (as long as my husband's benefits covers it which it looks like it does - thank gosh!) and they should be starting that on Monday before we go home on Wednesday.
We saw the ENT specialist and he says she has some blockages up there (no polyps yet) and has put her on a steroid nasal spray. We are going to get a CT scan done (when we do her lungs) and if the spray isn't working they will operate in September.
Other then all that she is doing really well. She is busy playing doctor with her bears and giving her babies bronchoscopys (she had one done in June.. a three year should NOT know what those are by the way.. poor thing) and she is busy calling the nurses "nerds" (she cant say it properly). It's cute, every time her IV beeps (she has a PICC line in case you are wondering) she sits up in bed and says "oh nerrrrrds... I'm beeping" and hten says it a little louder if they don't come in a few minutes.
They all love her there and she seems happy even though she is stuck in there but they are letting her leave the hospital for a few hours between her antibiotics.
So that's the update. OH and they did a swab on Kiana and she is fine. She is at grandma's about an hour away and I have seen her for about an hour since Alysa was admitted. Breaks my heart.