From Bad to Worse to Sleep

Shortly after I posted my blog last night, we went into crisis mode with Hannah.

She was so congested in her trach all of a sudden that she would wake up choking and then go into a breath-holding spell out of panic.  Even if I was able to clear out her trach, she had problems relaxing right after so she would start to turn blue because of the breath-holding.  She was incredibly junky with her trach, and very quickly the aspirate was thick, gooey, and brownish-green.   She had three episodes like this within about 2 hours.

Infection.

She would fall back to sleep but still be breathing pretty shallow.  You could tell she was working harder than normal to breathe while she was sleeping.   She had no fever, but with such a rapid onset of infection coming from her trach, I started to worry about pneumonia.

After all, it was one year ago this week that Hannah developed the pneumonia that put her in the hospital for six weeks and put our lives in hell and changed her life forever.

Daddy and I contemplated from about 12:30 am until about 2:00 am whether or not we should take her to the ER.  We brought her downstairs where the oxygen concentrator and pulse ox were, and for about an hour, we concentrated on keeping her suctioned and giving her supplemental oxygen (5 liters pushed through a mask).   Before we gave her oxygen, her O2 sats were hovering between 88 and 91.   With the oxygen, she was at about 94 to 96 and much more comfortable.

So we made the decision to ride it out until the morning (a few hours later) to see how she was doing.   Deciding to go the ER around here is a delicate balance and not an easy one.   1]   We know that she could catch something else (like how she got rotovirus and cellulitis last time), 2]  We have Ethan and Abigail at home so we don’t want to unnecessarily scare them about her condition, and 3] We go through our heads “what could they do that we can’t”.

Daddy and I switched roles at around 5 am, and she seemed to be stable.  Definitely requiring oxygen and lots of suctioning (where we usually rarely ever have to suction her), but much more comfortable and no more breath-holding panic spells.   So I took a quick nap for a few hours since I had been up all night.

Since our pediatrician’s office is not open on Sunday (which also happened to be Mother’s day), we decided to take her to the ER on a non-emergent basis.   We weren’t sure if we were dealing with pneumonia or just trachiitis or even possibly a UTI.  We wanted to get her a chest xray, blood work, and get her some antibiotics.  We didn’t want to wait until Monday, so we went to the ER.

Because we did it later that morning and in a more relaxed setting (not an emergency), we were able to explain to the kids why we were taking Hannah in (mostly that we would do it at her pediatrician’s office if they were open, but since they aren’t, we just wanted to get her checked out and get some medicine).  We don’t want them to worry unless there is something to worry about.

Even though we were taken back immediately when we got to the ER, we were there for almost 7 hours because they were so busy.   Her chest x-ray was clear, and since there was no fever, there is likely no pneumonia.   Her bloodwork came back with an elevation in her white blood cells at about 17,400 so there was definitely an infection.   Her urinalysis came back clean, no UTI or anything else worrisome.

The ER doc wanted to admit Hannah because of everything going on (we talked about the last few weeks), but we decided to bring her home and let her pediatrician follow up tomorrow and her neuro to follow up on Tuesday.   After explaining to the ER doc (who was very interested in Hannah) that we have a mini-hospital at home (oxygen, pulse ox, home nursing), she also agreed that since there isn’t anything they would do different in the hospital that it would be okay to take her home since it is presumed we are dealing with a bad trachiitis at this point.

They gave her some IV Cipro before we left, and we  have a prescription to continue with the Cipro for another 10 to 14 days.

We came home, and she has been doing much better tonight already.   She and I are downstairs tonight because we still have her on supplemental oxygen until we can get through this thick gook.   I have been doing a lot of suctioning, but not as much as last night, and no more panic-breathing attacks from her.   I really think the IV Cipro definitely kick started the recovery process because she is just so much more comfortable tonight.

So I ended up spending my mother’s day at the ER (since we left at almost 7 pm).   But you know what, that is okay.   Because at the end of the night tonight, I had all three of my babies at home with me.    That makes today a Happy Mother’s Day.