What a hectic day. Not a lot of change to report except that we are all managing to finally get some rest. I squeezed in a brief nap and Kate is napping now.
Getty’s having a rough go of finding good sleep with all the poking, prodding, and lung treatments every 2 hours. Actually, she just woke up as I write this and she is apparently ready to watch one of her favorite shows on her iPad.
We’re keeping her numbers up with full-time bipap respiratory support with oxygen bleed-in, and she’ stable. They are still not sure if it is a bacterial pneumonia or viral atelectasis (collapse of lung tissue) in the upper right lobe. Either way, there’s no reason to think she can’t be back to her old self in a few days.
Thanks for all the love and support! Hoot hoot!
Friday Getty started to have thicker secretions. As I suctioned her I noticed a little tooth popping out. I thought to myself, well now I understand the thicker secretions. Her HR went up that night as well and I chalked that up to pain she may be feeling due to the tooth. I gave her some rounds of Tylonel then Motrin and all seemed pretty good. I massaged her cute little tooth in the hopes that maybe it would stop hurting her and continue on right by her other cute bottom teeth.
So how did we get to the PICU this morning at 12am? Good question. Sunday was rough. HR was still not baseline, but it wasn’t alarming. Secretions were still a little thicker than usual but nothing crazy. We took good precautions to keep her airway clear. Lots of Breathing exercises to keep her lungs clear.
And while we are on the subject of lungs never once did they ever sound rattly. I checked them every hour like I did her temperature. Clear as a whistle. So nothing was really alarming. And then Sunday came.
Getty’s HR was still higher, her temp still fine, but her oxygen levels started to slowly drop. We increased her breathing exercises but still her O2 was lower. She had been on bi-pap 24/7 since Friday and so we were really surprised with the decrease. It got so low that we bled oxygen in to give her a break.
By lunchtime Mark and I decided that if she couldn’t hold 95% O2 levels with oxygen then we would bring her in. So we waited and waited until Sunday night. Getty was so incredibly tired. Her nap was not good and we were hoping that a good night sleep would give her some rest and give us some time to scramble and make plans if we had to bring her in.
11pm Sunday night it was time. We originally thought we should just call the ambulance, but the more we thought about it, we knew she could handle the trip and too be honest we know our little lady. We didn’t want some strangers getting their hands on her if it wasn’t necessary. Now if it were a complete emergency and Getty’s care was completely beyond our scope of care, then yes at some point relinquishing control may have to happen a bit, but not this.
We made the trip to Kaiser Roseville, got to the ER and let them evaluate her for a bit until we were taken to the PICU. Ironically enough we walked the same hallways as we did when Getty got her surgery for her g-tube and Nissen. It felt a little different. Then I knew what she was being treated for but this time we had no idea and that was very scary.
We go to the room and we made ourselves comfortable. The idea at first was to give her an IV. Give her some nutrients and then make some decisions. Getty had a chest x-ray around the same time. We meet all of the nurses and all was good. Then one of the nurses came in to inform us that the doctor on call looked at the x-ray and thought it was pneumonia in her right lung. My entire body felt a current of electricity. I thought I was going to pass out and I also felt sick to my stomach.
The nurse left and then we just kind of sat there. Okay so now what? What does that mean exactly? It was just very quiet for awhile.
Intensiveist came on call and told us what he thought. Basically what he thinks is happening is that the right lung has slight collapse. He didn’t seem overly concerned about it. When I hear collapse I think of men that stick dynamite under a building and the whole thing comes down. So I thought of Getty’s entire lung collapsing. He explained that a medicated nebulizer should open the airway and essentially pop it back open. She will also be prescribed a steroid to combat the inflammation. Getty will also be using a vibrating vest that will help knock loose all of the yuckies. Lots of breathing exercises which include cough assist, suction, nebulizer and percuss. So we are going to try that and see what happens. He didn’t totally rule out pneumonia, so they have started her on an antibiotic to treat it if it actually is pneumonia. She was swabbed for twice and should hear back to see if she is viral. So stay tuned, we will be constantly updating.
While Getty’s parents were calmly freaking out. She was her usual spunky self. She was very tired, but she was still in good spirits and always a constant teacher to Mark and I. When I asked the doctor how could we have known earlier that this was what was going on? I was waiting for a temperature increase for my signal. He said, “well I think you can only do the best you can, and I think you guys did great.” that felt good.
Let me also say for the record, there is a phrase that EVERYBODY so far has used since we have gotten here. And it is music to our ears. “You guys know her best, let us learn from you.” Wow really? Awesome.
That certainly was not the case last time, so I am not going question it, just say thank you. 🙂
So here are. Getty is sleeping soundly. A belly full of food and some powerful antibiotics. A round of breathing treatments will be coming in an hour.
I know many people have been saying prayer send sending good vibes. Please keep them coming. We so appreciate it and need it, thank you. And before I go I wanted to show you a picture we took of Getty right after she fell asleep in the PICU. Mark left briefly because we had forgotten a couple of things. He opened the bag and I was so touched that he remembered Getty’s pink comb. I can’t wait until she wakes up to see her friend by her side and she can say thank you daddy! 🙂
Write more later.