Pack Your Things, I've Come to Take You Home

The two days have been going at break neck speed. We came up to the hospital on Monday around 10:30 and administered her meds and gave her feeds throughout the day til they finally gave us the word that we were going to do Care By Parent.

While waiting for a room we had been talking to our home health company and to a compounding pharmacy to make sure we had everything we need available as soon as we get home. We started out with one company who never got their act together to make an appointment with us. Also they did not have an apnea monitor available so we ended up firing them and getting another company.

They came out to do their training at the exact time we were moving into our room. It was confusing, late in the day, and tons of information was being thrown at us. We hadn't had a chance to organize the room either so we couldn't remember where we put this, that and the other and had to do a lot of digging to find things.

So we were trained on using a feeding pump, oxygen tanks, pulsox and apnea monitor over the course of 2 hours. We spent most of our time on the apnea monitor. This device informs you when your child has stopped breathing. Amelia does not have apnea, but it was recommended that we get one for her to wear at night as a precaution, because she satts better on her tummy and the doctor felt better about letting her sleep on her tummy (as opposed to on her back as a precaution for SIDS) with the detector.

So I asked the rep, OK so we use this at night when she is sleeping and take it off during the day and he almost had a cow. He told me under no circumstances should I remove it at any time other than bathing. This was not what I had heard from my doctor. He told me he could lose his license if he told me otherwise, but wink, wink do what you want. The information on the machine is recorded and sent to a SIDS data collection site for research.

So with the information overload, stressed to the max, tired, hungry --- I don't think I heard anything but Charlie Brown's teachers voice after a while.

On top of that we had people wanting to visit and drop by and check on us to make sure everything was OK. It is very hard to keep to a schedule with the constant interruptions. Now I know how Amelia's nurses felt when I was asking them for this that and the other and distracting them from their duties.

Everyone finally vamoosed. Our (and when I saw our I mean Todd) first rookie error was leaving the clamp on the tubing when she was being fed. So her bed was wet and full of formula when I finally clued in to that. We had to take her out of the bed and change the bed linens. Luckily she didn't get any of her clothes wet. So that kind of kicked off our night.

The apnea monitor is the devil! It beeps at the slightest provocation and by around midnight of the first night we were tempted to go up to the helipad on the roof of the hospital and drop kick it off the side of the building. The sensors are velcroed onto a foam belt that is wrapped around her middle, instead of having sticky on them. The rep acted like that was a selling point because the sticky tape could harm sensitive skin! Well it wouldn't, so instead we were treated to this interminable screeching anytime the belt moved. Which apparently was constantly.

We thought we could hit the reset button and it would stop, but it continues to wail until you fix the (non) problem. Well you cannot even think straight with all that racket going on, so you just turn it off. Not really productive for detecting apnea now is it?

She wouldn't keep her satts up and we were not entirely confident with the pulsox monitor. Her heart rate kept reading well below 100 which is not accurate so we weren't sure that the saturation reading was acurate either. I did notice around 2:00 in the morning that her chest was retracting, so they decided to take her back into the pod for observation. The gave her a bit more liter flow for several hours. Todd slept in a chair next to her crib and I took advantage of the silence by getting a few winks.

to be continued