Poor Elizabeth!! Her oxygen saturation continued to decrease and he had to keep turning her level up, she made it to 7 liters and we got very concerned. We called her Dr and we were admitted to PICU. We think her decline is still related to her steroid wean and hopeful that a pulse dose of steroids will get her back on track and this will be a short stay (that would be a first, but Im hopeful!). When we got here tonight they had to do get an arterial blood gas, which is pretty painful, so Elizabeth was NOT happy at all about it, plus the fact it took them 3 sticks to get it didnt help her any. They also had to do a heel stick to get more blood for another test. So during all of that her requirement went up to over 10 liters! We are still waiting for her to "chill out" from being poked and messed with, her saturation is still not where it needs to be and her O2 requirement is still pretty high.
We are thankful though that the PICU staff here at TC Thompson are very famililar with Elizabeth and us, and actually put us in a room inside PICU so that we are able to stay with her (they knew someone always stays). They decided not to start an IV unless she needs it, which is another plus since she doesnt do well with IVs. So they plan to do the pulse dose of steroids tonight, and give them to her through her Gtube. We were told the soonest we would see improvement from the steroids would be 12 hrs, but from experience we know the full effect wont be for a day or so.
And of course we are still having the issue of not having home nursing care, so we will see how this admission affects that, if at all.
Will update tomorrow with any more news or any changes. We were pretty excited we almost made it home a whole month this time :(
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