She Keeps Us On Our Toes!

Lately it's been all night running in and out of her room. Not for just the usual sleepless reasons or for pump issue reasons, well for those too. The main reason lately has been alarms going off for low oxygen saturation. This really, really bugs me because she's been on half a liter of oxygen at night since May with no problems! We even got to the point where we thought she would be off the oxygen soon or, at least at a lower flow. It feels like we've taken three steps back.

To give you some history Amber's monitor will alarm if the her level is below 92. They would like her to stay at 96 and above. If her levels do drop at all to cause the alarm to go off it's called desating. When she was sick back in May her level was in the 80's which is very bad news.

Our problems started a few nights ago. The alarm went off I went in and Amber had taken her nose cannula out and her level was 70! It has never, ever been that bad! I put her cannula back in and (thankfully) she went back up to her normal level at a pretty good rate.
The next night she desated a few times for barely a minute, most times I didn't get in her room fast enough to see the number. Over the next few days it happened more and more during the night. What really bothered me about it was each time her cannula was in her nose. I even watched her to make sure she wasn't pulling it out and putting it back in, something she's been known to do.

So, I called her pulmonary specialist. We're concerned but not overly concerned because she doesn't seem to be in distress when it happens, it doesn't happen for long and her heart rate isn't elevated. He told us to increase her oxygen flow at night to 1 liter, which is really sad because we were hoping to decrease it not increase it. He also started her on an inhaler every 4 hours that she's awake. He'll be seeing her sometime soon and was not happy we didn't have a surgery date yet.  Oh and he's having us run pedialite through her g-tube at night because she's still throwing up a lot!

She sure does like to keep us on our toes!!

By the way it's hoodie season!

 I love this one! She wore it a ton last year but I can't seem to find a picture.  

Tomorrow won't be a wordless Wednesday but a throwback Wednesday, don't worry there will still be a lot of pictures!

Day 2

Today is day 2 of Amber being in the hospital, I had to really think about that it feels like we've been here for longer than that.

She spent the night on .2 oxygen (had been at .3) and seemed to do ok. She woke up this morning very congested. Seems like she is feeling worse today; she's very fussy, not really with it and had one bout of diarrhea. The ER Dr we saw last Sunday came in and confirmed that it did look like she was having a much harder time breathing than when she looked at her last Sunday. So now her oxygen up to between .2 and .3.

They added a water bottle type thing to her oxygen to make sure she doesn't get dried out. When they did this they didn't break the seal to the bottle so Amber was on room air for less than a minute. In that time her pulse ox numbers rapidly dropped down to the high 70's. That accident confirmed to them that she definitely can not be off oxygen at this point.

The plan is still to give her another round of antibiotics tonight (her 3rd) and to wean her off the oxygen. Based on how she acted today I'm not sure when they'll try to wean her off the oxygen again. They can't give us an exact day we'll be going home because it really all depends on how she does getting off the oxygen.

We're praying she gets better soon, we just want to see her smiling again!