PICU 6

Shortly after I posted this morning Lyla was moved to the pediatric ICU. She had not moved for 13 hours and her blood gas showed her CO2 was dangerously high. Essentially she could not wake up because she was too weak.

We've taken up residence in the new PICU which is beautiful compared to the old one. It doesn't make it easier to be here, but at least it's more comfortable. We have a couch, chair and desk right in the room as well as out own bathroom and fridge. We were also lucky enough to get a sleep room.

Lyla was intubated and put on a ventilator shortly after we got here. It was sad to see, but it is already helping her breathe so much better that it's worth it. She was getting enough oxygen on the floor, but she could not effectively breathe out the carbon dioxide. The vent manages the in and the out so it is able to clear out the CO2. Lyla's venous blood gas this afternoon showed her level is now in the sixties.

Other news of the day is that Lyla got her MRI. Instead of just the head, they also scanned her cervical spine. The c-spine is where the nerves that control the diaphragm are located and there was concern that Lyla might have a new tumor that was compressing or affecting her spinal cord. We waited for Dr. Bendel all afternoon and I was nervous when I saw her walk in and head right for the intensivist's desk. Thankfully it wasn't too long before she walked over. She must have known I would be nervous because even before she gowned up she said, "Emily, the scan is clear" and gave me the thumbs up. That was all I needed to know we were in the clear.

The scan looked good and even the crescent of white that we have seen on the last two scans looks better. The official radiology report also came back and said they think it looks clear too. GREAT NEWS! I was so worried that there would be new tumor and we would have to start all over again with surgery and chemo. Dr. Bendel said she would sto by tomorrow, but at this point it's really more up to the pulmonary team. She also said she would let Dr. Kiesling know so she can follow up later on what might be happening with Lyla's diaphragm.

Despite the ventilator they will try to do a fluoroscopy tomorrow to see what the situation is with the diaphragm. If it's moving paradoxically, we may be able to wait and see if it heals on its own. If it's not moving at all there will be more discussion. Everyone is hopeful that this is just a really bad pneumonia and that Lyla will recover quickly.

She is already doing far better than she was this morning. She is still sedated so she is not "awake" but she is looking good and you can see in her face that she is already far healthier now that her levels are under control. Dr. Vespasiano said he thinks it should only be 3 or 4 days until she is ready to be extubated.

Even so, there are a lot of tests they will need to do before Lyla is ready to go home. Se will need a swallow study and a sleep study. They haven't given us a timeframe, but I am guessing we will be here at least a week. No telling when Lyla might be ready for school again.

Thanks to those who have called, emailed and texted. We appreciate your support! There are stringent visitor restrictions at the hospital right now so Lyla can't have visitors, but feel free to contact us for updates. I will try to keep the blog updated at least once a day.

Picu 6 over and out!