Hospitalization…day #2, PICU

When I woke up this morning, I remember specifically thinking “I wonder what today will bring” for Hannah.  I had no idea it would end up with her getting so worse, so fast, and ending up in the PICU being intubated and on a vent to help her breathe.   I’m actually hesitant to say day#2, because we still have 5 more hours until the day officially ends, and the way this day has been going, who knows what could happen in the next five hours.

Hannah was out most of the night, but when she would wake up, she would immediately be gasping for air.  Looking back, these were breath-holding spells caused by panic, fear, inability to clear her chest, not really sure.  Regardless of what caused it, without oxygen her O2 sats drop very quickly and she turns blue.   With the oxygen, we are able to get her back to a good oxygenation and breathing, and she passes out exhausted…so we thought.  Again, in hindsight, it seems that she probably was having seizures due to the breath-holding spells, and what we thought was passing out from exhaustion was actually a postical state post seizure.

When Daddy got there, I took a shower,  While I was in the shower, she had another episode (again, not knowing it was a seizure at this time), and he called the nurse on the nurse’s button since our nurse was not around.  He ended up pressing the button multiple times because no one was responding, which we found out calls a code-blue and brings out the medical infantry.  I was still in the bathroom getting dressed from my shower, and I could not get the door open because there were so many people in Hannah’s room, working on her.  I actually pushed doctors out of the way so I could get out of the bathroom to Hannah!

The decision was then made to take Hannah to the PCU (pediatric care unit), which is an intermediate care area, where she would be constantly monitored in a pod with 3 other beds and an assigned nurse.

Within less than an hour there, she could not catch her breath at all, and even with a breathing treatment and the oxygen mask at 15 liters, she could not breathe.   The doctors wanted to intubate her (put a tube in her throat and put her on a vent) to help her breathe.   Daddy and I were quickly kicked out of the room, and there were about 10 to 12 people in there working on putting this tube there.

It was at that moment that I just lost it.  I had been okay dealing with everything up until that point.  But I felt like this step, intubation, was crossing a line from “she’ll be okay” to “will she be okay?”  I went from being completely on top of everything medical going on to feeling completely lost and out of control.  I felt like she was crashing before my eyes, and there was nothing I could do to help her.

We were then moved to the ICU because her condition was critical.   She was still agitated because her IV had blown post intubation, and she was not sedated enough – but at least she had enough so she was not wide awake.  It was horrible to watch, absolutely a nightmare.   Because so many people were trying to get IVs into her during the past couple of days and she was dehydrated (even on fluids), they had to do a central line IV in the femoral artery in her leg.   There was so much commotion in her little space in the ICU that Daddy and I felt way in the back.  They suggested we give them an hour to get everything set up and to go get some lunch.

At the suggestion of the PICU care team, we ended up having lunch upstairs at the Ronald McDonald house.   Daddy had to leave to pick up Ethan and Abigail, so I took advantage of their “nap rooms” and crashed for almost 90 minutes.  I guess I needed sleep.

I came back downstairs after my nap, and she was doing much better.  Really resting peacefully.  She has a 24-hour continuous EEG going, an IV port with 7 entrances, nasogastric tube, endotracheal tube on the vent, in wrist restraints (precautionary, as they don’t want her to wake up and pull at all her stuff), and on multiple meds (two seizure meds plus versed, tylenol, and fentanyl).  She still has a fever, but it seems to have gone down about a point in a couple of hours (she is now at 100.6).   She also has a Foley catheter in to drain her bladder because for some reason, it is not draining on her own — the docs are not worried about it, as it could be caused by some of her meds).

It is weird sitting in there watching her.  She is completely out now.  There are so few places I can touch her because she has so much going on.

They did bloodwork, sputum cultures, and urine cultures that were sent.  We should start receiving the results of those within 24-48 hours.

The main priority right now for the ICU team, which I agree with, is find out what is going on primarily and what is secondary to all of this.   They are not taking a ‘wait and see’ approach like we did upstairs, which is what she needs right now.

I’m going to head back in there in a bit.   I feel so useless just sitting there staring at her.  I don’t know what to do with myself, but I know I have to be here.  I want to be here.   I’m in the PICU parent waiting room right now, and this is where I will probably sleep tonight.   There were no rooms left at the Ronald McDonald house, so I will try again tomorrow.

I’m hoping and praying that tonight is quiet… no surprises and no more crashing.