Slow and Steady

After I posted on FB Friday that the PICU doc wanted to try Ethan on some hi-flow oxygen again later, they decided not to. He hadn't been resting very well, and his heart rate was still up.   I left Brian and my Dad and Teresa with him and went to work at 7pm.  By the time I pulled in the garage at the hospital Brian was texting me telling me Ethan had spiked another temp. They got him some Tylenol quickly and felt it was still this darn RSV causing it. But when I talked to his nurse again at 2:30am he had spiked another temp so they did a chest X-ray. This one now looks like he may have more of a consolidation in his right lower lobe of his lung and some fluid on his lungs. They wouldn't come right out and say "pneumonia" or "pulmonary edema". But they did increase his Lasix, start him on an antibiotic, and draw more blood cultures.  

Saturday I slept at home due to the fact that my work 'week' started at 7pm that night. Hailey and Brian went to spend the day with him.  It seems they were able to get him down to 30% on the Bipap and decided to switch him over to the High Flow Nasal Cannula Oxygen at 11 liters. This is a humidified, special type of nasal cannula, as you can't shoot 11 liters of o's downs a regular cannula. 

And as long as he's on this type of oxygen, he stays in the PICU. He's got to get back to regular nasal cannula oxygen or room air before they boot us out of PICU Suite 16. 

You can see its fancy schmancy specialized coiled wires:

And he's done so great on it-I think the Bipap mask is gone for good!  That sure made him happy. 

So they tried to feed him a little, 100ml over two hours, and he didn't like it too well, so they decided to hold off on any more feeds tonight. It also appears he's got some elevated inflammatory markers-CRP and Sed Rate, which would not be surprising with the stress his body is under right now. 

He still doesn't seem to be resting very well, so he's received some Ativan, and last night it helped him get some sleep-tonight-not so much.  They got an X-ray of his belly, which showed he needed to poop-which he promptly did for his nurse. And they are planning to get another one in the morning to see if he has developed a little ileus or obstruction. 

I'm more than a little upset he didn't get his immunoglobulin infusion today.  Especially since I've told them since Tuesday he gets it on Saturdays.  The Vascular Access team has to administer it and guess what?  Yep, you guessed it. They don't work weekends. So the brilliant plan was to just do it Monday. Except we were always told you can't miss the original date by more than one day-or you just have to forgoe that week's dose. And since he didn't get it Friday, and the Vasculat Team won't be in until Monday....yep, that's more than a day. And more than I'm comfortable with. Especially since I sent all his meds and supplies down today to do the infusion and they won't let me do it. I'm ok to do it every single week in our home without the watchful eye of a doctor, but not in the hospital. I may not have RN after my name, but I do have MOM. And I think that should qualify. Besides, last time the Vascular Access team did it, they only had short needles, so we had to ridiculously tape them down to hold them in his stomach, and they still leaked. AND I had to show them how to prime and work the pump. I know it's just because they don't get a lot of experience doing it-again, all the more reason they should just let me do it.  They know I'm not happy and planned to call Allergy/Immunology to find out what their recommendations are. But I can ensure you, if he doesn't get that dose Sunday I'm going to be even more angry. 

On an awesome note, I got a phone call from E's amazingly sweet pediatrician Dr Russell yesterday!  She called and left a message and left me her personal cell number to call her back. One of her residents had let her know E had been admitted and when she found out he was transferred to the PICU she was very concerned. Wanted to make sure we got an echo, and to make absolutely sure I was letting them know that I know him best (of course I am-she knows me well) and if I had any trouble, questions or concerns to call her. She wants me to keep her updated on his status and finally just wanted to see how I was doing. Caregivers often get overlooked and she made my day when she told me to "hang in there". "You're doing a fantastic job-always do!"  She knew I needed that. 

It's funny, Ethan's had RSV before, he's been in the PICU before. He's fought like hell for years with illnesses and two failed pulmonary valves and surgeries to fix those. And we thought we had run out of luck and time with him in 2013. But as I was standing in his room on 6 Henson, watching him tank and having the Rapid Repsonse team called and his room fill with dozens of people it hit me hard. I started crying. And I don't cry. I mean I DON'T CRY IN SITUATIONS LIKE THAT.  I'm strong, I keep my emotions in check and get shit done. Get him well. Get him where he needs to be. Nod and smile and answer their questions. I'm not the crying mom. That night, I was that mom. And it was surreal. 

I've always said Ethan would beat the big stuff and in the end we would lose him to some crappy respiratory virus, and at that moment, I felt like it could be happening. 

But he's not done fighting yet, so keep him in your prayers he kicks this thing, cause it's really stressing me out!  

Gonna spend some time with the bald kid when I get off work at 0700 and try to get him to sleep and see what the plan is for Sunday.  Will update when I know more. 

And good luck to Hailey Jayne and Pride VB as they play today in Gardner Kansas!  Bring us back a medal!!