Weekend Update

There is nothing like a quiet relaxing weekend after a unbelievably difficult week and that's what we got: nothing like a quiet relaxing weekend.  Four out of five nursing shifts cancelled and I scrambled all weekend to find someone to cover those. In addition, Maggie decided to reestablish herself as the appropriate center of attention in this house and freaked all of us out with an awesome display of medical need.

It started Friday night when the nurse called at 7PM to cancel his overnight shift. That is never a good start. I went through my list and started texting or calling various nurses and lo and behold, I found someone to cover the shift. I was feeling quite proud of myself, but the feeling didn't last.

The evening nurse was still there. At 10PM Maggie had an "episode" in which she was really struggling to breathe. This happened a couple of weeks ago too. We got her upright and changed the trach tube again and she calmed down and everything was OK. The night nurse arrived and took over and I went to bed. The phone rang at 3:30 and I knew immediately that I had to come downstairs. (I have instructed the night nurses to call the house phone if they need me because it rings right next to our bed. This saves them from having to leave Maggie's bedside to come and yell for me.) It doesn't happen very often lately, so I flew down the stairs.

Maggie was desperately trying to get air and looked very bad. Once again we sat her upright and I could feel her start to calm down but she needed a lot of oxygen. I feared pneumonia and after a bit I decided enough was enough and we had to go to the ER. After our close call a couple of weeks ago - for essentially the same sort of episode - I had all the papers ready to go. We put Maggie in her chair and I quickly got dressed and grabbed the cell phone, kindle fire and chargers (NEVER forget the chargers) and took off.

The hospital is about 5 minutes away. Maggie needed O2 but was no longer in distress. IN fact on the way over, she was slamming her hand down because the radio was on and NOT her music. I told her she had to wait, but her demands actually calmed me down quite a bit. If she wanted her music, she couldn't be in too much trouble. We arrived at the ER around 4:45.

By 7:30 they had completed and read a chest xray and other tests, all of which were negative. That's good. No pneumonia, no UTI, no obvious problem with the blood tests. Yes she needed increased oxygen and yes she had two of these episodes, but I was comfortable that we could handle things at home. The Emergency Docs were not, though and wanted to admit her. I started pushing back because she just didn't need to stay. We had to wait for the pediatricians to come down from the hospital floor to evaluate her. That took hours.

I'm not sure what the disconnect was there and I suspect we were sort of lost in the change of shift in the ER.  Eventually, like 11:00AM they changed us from a treatment room to a regular room still in the ER and I told that nurse what we were waiting for. He went to check and I suspect that was the first time anyone actually TOLD the peds team that we were waiting. They showed up around 1:00 and agreed Maggie could go home but it still took over an hour to get out of there.  She was discharged around 2:30 PM, 11 hours after I flew down the stairs and nearly 10 hours after we arrived in the ER.

As we were leaving the hospital I received a text from the nurse scheduled for both the Saturday and Sunday night shifts. She was cancelling both shifts because her mother was also in the ER. I scrambled and found nurses to cover both shifts. Saturday night there was another episode with Maggie. I came down at 2:30AM this time and we put her in her chair where she was fine. She slept there the rest of the night. Whatever is going on is obviously exacerbated when she is lying flat. I promised the pediatrician at the hospital that I would call the pulmonologist first thing Monday morning, and I have already done that.  

I was beyond exhausted yesterday. The nurse was supposed to work form 1-9 and I planned a long afternoon nap, but unbelievably she too called and cancelled because her mom was also in the ER. What a weekend for the ER! The moms of both nurses were admitted to the hospital. I tried to get a replacement but was striking out, until I called Fely, who agreed to come in and work at 3. I tried to nap but my body clock is so off kilter at this point that I was laying there exhausted and wide awake.

Last night, Maggie did OK. And I slept hard for seven hours straight. As far as I know all the regular nurses will be here. It will take me a few days to catch up now, but hopefully the drama will stop for a while.

And now it's Monday. Maggie's in school and you would never knew all of that went down.

Addendum: Maggie will have a bronchoscopy on Wednesday. That's a procedure done under anesthesia in the OR but it is pain free. They just go have a look/see by inserting a scope. That will tell us if there is some inflammation or something else obvious going on. She will be home by dinner time on Wednesday.