Bye BiPAP!! Bye ICU???

We are thankful to report that this afternoon at 2:30 they were able to remove James' BiPAP machine and put him back on oyxgen nasal prongs. At this time he is holding okay on the oyxgen prongs without needing the extra help the BiPAP gave. His breathing continues to fluctuate up and down from low/normal (35bpm) to high (70bpm) as it did on the BiPAP and his SATs are holding between 95-100%. We are just thankful that he has made this step forward and does not require so much assistance to breath anymore.

James continues to be fever free. This mornings x-ray showed definite improvement in his lungs, another reason to be thankful. They then proceeded to medicate him to help drain excess fluid out of his body so that his body would not have to do that extra task once he came off the BiPAP. If he holds steady and no one more urgent needs the room tonight then he will head out of ICU tomorrow morning ... yah!! Never thought I'd be so happy to see the Ward again. Of course, home is always better, but right now the Ward is looking mighty appealing.

James is in PICU, P meaning Pediatric, and so you would think that Pediatric being children and children coming with parents it'd be more parent friendly, but not so. When we originally arrived in ICU the doctor was very good about explaining what was happening, what the concerns were, why they were doing what they were doing ...etc ... just like it should be. Since then I've only seen the Resident each morning, I have no idea who the doctor is in control of James' file. The Resident comes in and does her assessment, taking that information back to the Team. This is our only opportunity to ask question or get some sort of information, and this information is unclear and vague, since she is just taking the information to the Team who will decide how to proceed. Later you will see the Team outside the room and peeking in the room from the door ... now how much does one see peeking in a dark room (James insists the lights be left off) where a child is either covered or buried in my arms?? They leave their diagnosis and carry on to the next room, they do not enter the room to see if the Resident assessed incorrectly or missed something, they do not come in to explain what they hope to do, how things are going, if you have any questions, etc. Instructions are left with the nurse and she proceeds to do what the doctor says, so if you're dozing off or don't ask questions, you have no idea what is happening to your child. You are really not considered the caregiver in this place, just a visitor sitting on a hard rock chair. Parents are not expect to stay overnight and so only a chair is provided ... you MAY stay, but then you stay on the chair, no pull out bed here. I realize that it is ICU, they need all the room they can get when working and he has his own personal nurse ... but I'm sorry, I would never leave James at this time when he wants and needs me there the most. They were nice enough to provide a second chair so I have somewhere to put up my feet. There are no phones in the room or bathrooms in the ICU Unit/Ward, for these you get to go to the main lobby. So although we've never really liked the Ward, it's looking like a luxury now ... a bed, a phone, but most of all being part of the process, being kept informed and a place where they encourage parents to stay and be as involved as possible.

James is also looking more "alive", no longer such a sad and pathetic look on his face. Hopefully we will soon see him trying to play again, for now the TV keeps him entertained. He still tires easily and requires plenty of rest.

Rob has taken the last couple days off and done his turn at the hospital too, allowing me to go home and get some rest, as well as refresh myself and feel better prepared to handle the next night/day. This has really been helpful and rather a luxury, but the bills still need to be paid, so tomorrow he'll head back to work. With the hope of James heading out of ICU this doesn't seem so bad anymore and is more what I am used to when it comes to hospital time.

We continue to thank you for your prayers and support and will try to keep you updated on James' progress ... my computer time will be even more limited since I will now have to escape from James to use the comptuers at the hospital, but I'm sure Rob will do the honours if I do not :)