Okay fellow blogger readers. The sleep I was hoping to get still has not arrived. I surely am working on auto pilot. I have had a crazy work schedule this week and adding a quarterly work meeting tonight has really been too much.

Yesterday was a BAD BAD day. It started off with the normal sleep deprivation, despite giving him some new meds that the pallative dr. ordered (guess she came by the hospital room at night while we were both sleeping and she was very concerned as Avery looked VERY uncomfortable) So glad someone else was able to see this. Sometimes I feel like I am crazy.......

Avery was up in the middle of Weds. night with a fever. A fever with a central line is very alarming. The worry is that he has a line infection, so the dr. needs to be called immediately. I called in the early am, and the nurse pract. was very concerned and order a home nurse come to the house to draw labs and home IV antibiotics. This was soooo overwhelming. Meanwhile Avery was looking soooooo bad. Just really out of it and feverish.

I went to work (because I really had to but he was fine with the nurse for a few hrs). When I got home is when things got crazy. Isaiah was still not feeling well but started his antibiotics. The home nurse came and there was alot of phone calls back and forth on what to do with his TPN and antibiotics and not being able to give him his lipids (fat in the TPN) b/c it is not compatible with the antibiotics and yada yada yada. This went on for some time. Then she started the meds and the pump was not working. Great!!!!. Then our TPN pump was having issues.....

She then has to draw blood (a whole 24 cc which is HUGE for him) for which he starts to turns gray and having trouble maintaining his oxygen. Luckily he was responding to his O2 mask. Then b/c he was feverish and we were having trouble bringing it down, he was too sweaty to keep his pulse oximeter on and it would not read his sats (so we had no idea how well he was oxgenating).

So in the end the home supply company ended up delivering all the new pumps after 8pm and he finally settled down. But off course it did not last long and he was still up all night long.

Does this sound exhausting or What?????

So today I had 29 patients scheduled (although only saw 12)and a work meeting I had no idea about and did not get home until 8pm. Meanwhile Isaiah was still spiking a temp early this evening. Avery had a better day but man this boy better sleep tonight or I will surely be in the nuthouse.

Luckily tomorrow is a big storm day and we will all be housebound. Hopefully things are quiet and starting to settle down.