Back and forth

Overall, Caelen is happy and doing ok. He's actually recovering from the diarrhea and vomiting and keeping fluids down. The plan was to get him back to baseline feeds and go home tomorrow. Then his oxygen dipped. We spent most of the day trying to figure out what was wrong. He was happy and playing so no one was too concerned, but I couldn't shake the feeling that something wasn't right.

The resident came in this evening and I asked about an X-ray again. He examined Caelen and felt that the lower lobes of his lungs were wet, probably from catching him up on fluids and holding off on diuretics at the same time. So Caelen was just given an IV dose of lasix to help his lungs and we'll X-ray again in the morning. I can't tell you how worried I was that plastic bronchitis was creeping back again. Hopefully, the lasix does the trick.

Funny that we came in for dehydration , and now we're battling wet lungs. I was trying to warn of this today and said that its a very fine line with Caelen's lungs, and he tips easily. But hopefully it's as simple as diuretics.

On the plus side, he had a echo done today so that DC could have their own images, and Dr Harasheh said that Caelen's heart function is great. He said he couldn't explain why his heart looks so good with everything that has occurred and all of the meds he's on. Maybe the meds are working? Seems Dr. Rychik knew what he was doing by putting Caelen on the heart failure meds, and it appears that they are working. Once again, Caelen is baffling Dr's, but this time it's good. He is an enigma.

So, I don't know if we'll get out of here tomorrow. My guess is now Sunday. Aside from not wanting to be here, it's not necessarily because its's DC, it's more that we are on contact isolation and can't leave the room. Caelen is tethered to monitors and he's bored and wants to go run the halls. I can't blame him for being totally annoyed with me. Seems I just keep dragging him to crappy places. He was supposed to go see Yo Gabba Live tomorrow in Baltimore, but now he'll have to wait till next year.

Hopefully, all of these crappy germs will be done soon and we can come out of self imposed exile. Please say a prayer for Caelen's sats to improve and that the lasix does the trick so we can safely go home.

Lastly, please also say a prayer for out heart friend Matthew who passed away yesterday during his heart transplant. He fought so hard for 7 years, but now he is at peace. Please pray for his family and all of the medical team at CHOP, including his surgeon, who are heartbroken. The medical team, especially his nurses and the child life specialists did such a great job caring for him throughout his long hospital stay. You couldn't help but smile when he rolled down the halls in his pirate hat and wheelchair, his crew behind him pushing his vent, and dialysis machine. He had an entourage of nurses, respiratory therapists, social workers, teachers and specialists, and I think they loved getting him out of his room as much as he did. He loved pirates and Disney's cars, and Caelen always stopped outside of his room to stare at the cars stickers on his windows, and say, "get better Matthew!" Matthew touched a very special place in my heart. There was just something magical about him, and my heart is breaking for his mom.

So as I end this post with tears streaming, I want to say, goodnight Matthew. Sleep well. You need a lot of energy in Heaven for running and playing. Thank you for the smiles, you will always have a special place in my heart.

Love,
Katye & Caelen