TCH

So... Here we sit at Children's Hospital yet again. Unfortunately, this visit isn't going as great as last visit. It seems the doctors aren't listening to us... Hmmm, maybe they should go work at St. Mary's... Anyway... We sat here ALL day yesterday after the doctors had come in, waiting to see what they were going to do. Not one thing was done yesterday, then they wanted to send us HOME this morning.

He is doing better as far as his oxygen requirement. He is back down to "baseline" which is 1 liter. When we flew here he was on 3 liters in the airplaine, or as Joseph says, hairplane. Unfortunately, he can't lay on his left side because his oxygen saturation drops into the low-mid 80s. We do know from the xray done on Tuesday at Delta Hospital, that his pneumonia is in his left side, so it makes sense that he has a harder time breathing when laying on that side.

His blood pressures have been pretty high for him and we had mentioned it to the doctors yesterday, but they weren't going to call in the cardiologist until I insisted on seeing one today. He seemed surprised that the team hadn't ordered a new chest xray because his heart was larger in the xray from Tuesday. So, the xray was done late this afternoon, so we should have results in the morning. And they are also going to do another echo to make sure his heart is doing ok.

When his pediatrician (we love you Dr. Moore) called to have him admitted Tuesday, she spoke to the pulmonology attending to get things started. Stating that he needed to SEE a pulmonologist, get started on vibration therapy and be evaluated. WE HAVE NOT SEEN A PULMONOLOGIST. The doctors have not called in the pulmonology team. Does that make any sense???????????? He is here for chronic lung problems and they are ready to send him HOME without even doing what he was sent here to have done. I was so upset this morning.... I cried and cried and cried.... If they do NOT listen to us tomorrow, I am asking, no insisting, on a different team of doctors. I am so tired of some doctors treating US like we are over reacting. This is my child!!! He is not like a "normal" kid with a cold, any small lung infection can KILL him... What don't they get???

GRRRRR!!!!!!!!!!!!!!!!

Another day of running around to hospitals...

When Joe got home from work this morning he woke me up because James was running a fever. I looked into his bed and he was working SO hard to breathe. Even harder than yesterday. We gave him a neb treatment and I called the doctor to see what his x-ray showed from yesterday. No pneumonia, which is good news, but the radiologist said he could tell that his lungs were in bad shape, pneumonia or not. The doctor wanted James hospitalized to go through percussion therapy with a respiratory therapist IN the hospital. She said she wanted them to use a vibration vest (?) to help keep James' lungs clear. She told me they use these a lot in children and adults with cystic fibrosis. Fortunately James has tested negative for CF... She called the local hospital and they didn't want the responsibility, again, they are not really equipped for children and James truly scares all of the nurses at Delta Hospital... SOOO, quickly we packed ourselves up for another hospital stay. His doc spoke with a pediatrician from St. Mary's, she said to go through the ER, tell them what was going on, and then they could admit him for treatment from there. Well, that didn't happen. The ER doc treated us like we were over-reacting, which maybe I do once in awhile, but when it comes to a child with severe disabilities and illnesses, I think I have EVERY right to OVER react!!! On top of that, nobody in the Grand Junction area even had the vibration vest they needed in order to do the treatment the doctor had originally wanted, and since it was Friday afternoon, the chances of us getting one soon were pretty much nil. So he was ready to send us home. After Joe and I talked for a few, we decided we weren't really comfortable with this for a few reasons... One, we live about 45 minutes away. Two, it was snowing like CRAZY. Three, he was running a fever, having a hard time breathing and wheezing. I told the doctor my concerns and guess what he said to me.... "Insurance doesn't pay for mom's peace of mind." And that Joe and I don't need to bring James in for every cough or cold, that we should "learn to manage his care a little better."

WHAT?!?!?!?!?!?!

Let me just say this.... That dr is lucky he went home with all his teeth today...

So, we are at home with James. He seems to be doing a little better. Fever is gone. We are doing neb treatments every 3 hours instead of 4 and we have him in his little vibrating bouncer seat. They wanted vibration, right? We'll do it ourselves. I think we are managing just fine.

Sleep... I think I've heard of that before...

Sooo.... Joseph woke me up at about 5:30 this morning, after my insomnia kept me up til 4 a.m. He crawled into bed with me with a really bad cough... He asked for a glass of water. Thank GOD!!! When I got up I noticed a funny noise coming from James' bed. He was having a very hard time breathing. He was wheezing worse than I've ever heard him wheeze before. I quickly called Hospice, they have a nurse on call 24/7 that comes to us, rather than having to load both kids and head to the ER by myself since Joe works graves... Anyways, while waiting for her I did James' neb treatment and some deep nose and mouth suctioning, by time she got here he sounded 75% better. But we did end up taking him in to see a doctor and doing a chest x-ray just to be on the safe side. He does have a double ear infection, poor baby!!! I should have x-ray results in the morning. So, needless to say, I got about 3 hours of broken sleep last night, but my wonderful husband, Joe, did let me take a nap this afternoon, but I woke up with a tummy ache. So Joe made us some chicken noodle soup and let me take a break... I love that man! ; )

What the Blog???

I was asked by a very dear friend, (Cassandra), to create this blog so that she can keep tabs on our sweet baby James. So here it is, my attempts at trying to keep everyone up to date with James and his condition. Please read James' story for those of you who don't know us/him... Love to all...