ICU

Some of you already received an e-mail updating on James situation since Rob could not remember the blog password ... so what is to follow is a more detailed update of what he already passed along.

We came to realize that we were not going to make it through the weekend to our Pediatrician appointment on Tuesday and so yesterday morning I took James in to Emerge. It's that awful feeling of hindsight afterwards when you realize you should have done so earlier. Sunday morning we had already debated taking him in, but we held of, hoping he'd make it through the weekend or head uphill instead of downhill

Upon arriving at Emerge James SAT (oxygen) levels registered at 83% ( after checking him three times they decided this was indeed right even though he did not look to be that bad. He was quickly put on oxygen. One look at the mask and he put up a screaming fit, so we held it by his face and then eventually took the mask part off and just held the tube near his face. He did not like this blowing in his face, but with time gave into the idea, maybe realizing it helped. Eventually I was even able to get him to hold it himself, with the occasional reminder to keep it by his nose. They immediately determined that he would be admitted, based upon his SAT levels, as well as the fact that he is currently on Prednisone. Being on Prednisone makes it harder for them to get a clear picture as to the cause of his illness, since his immune system is suppressed blood work does not always give them a clear pictures. So prednisone can make the equation harder to figure out and they wanted to keep him in and watch him. Time would tell that that was the least of our concerns, just getting him to breath turned into priority.

An x-ray indicated that James has pneumonia (and for most of us who think of pneumonia as a type of cold, which is it, this term is really a very broad medical term meaning "inflammation/infection in the lungs"). Although x-rays have always indicated this, none have ever been so clear or bad as this time. Having chronic bronchitis is somewhat like saying he has chronic pneumonia, in James case this is in the bottom part of his left and right lungs. This time the x-ray came back showing that his right lung was quite full as well the sides of his left lung were inflammed.

Late afternoon we were moved up to the Ward and from there they put James on nose prong oxygen - instead of holding the tube it sits in his nose. He fought it for a minute and then left it, which was nice because we didn't even have to tape it down. Into the evening he slowly got worse his SAT levels were in the high 80's to low 90's, even with the oxygen assistance and his breathing was in the 70-80bpm. We feed him his supper via g-tube and also wonder if this made things worse. He became worked up and uptight and vomitted and they decided to call in the P.A.C.E. Team (Pediatric Asssessment of Critical Events). This is a new team that is can be called in whenever there is concern about a patients airway, breathing, circulation or neurological state. The team comes in and re-evaluates the situation to determine if something was missed or more needs to be done. So after a new flood of doctors, blood work, and phone calls, it was determined that we need to get James down to ICU where they are better able to deal with breathing difficulties. They were very quick and efficient once they realize that something need to be done, in no time everything was loaded up and we were heading downstairs, upon arrival it became obvious that they had already worked out a game plan and made the preperations for it.

I was quickly introduced to the head doctor who explained that they would need to put James on a BiPAP machine to help inflate his lungs and allow the little bit of healthy lung left to work fully. A biPAP machine is similar to a CPAP machine, which many people use for sleep apnea. The BiPAP allows people to get more air in and out of the lungs without the natural muscular effort needed to do so. Upon arrival to ICU James did not talk or move, except for his eyes. He was using all his energy to breath. They did the prep work and then were fully surprised at how much energy and fight there was in our boy when it came time to put the mask on, he managed to get a few good kicks to the jaw of the nurse and fought for a few minutes before he slowed down and began to realize it helped. After his initial fight he whimpered and fought sleep for almost two hours, but did not try to take the mask off again until during the night, when he woke up several time in a state of panic and shock and tried to rip it off ... poor guy.

James spent all day on my lap and would not allow me to put him down until he was moved to ICU. After they put the biPAP on him he did not want to go on my lap but just wanted me to hold his hand ... I could not let go of it unless he was soundly sleeping and every now and then in his sleep he would reach out for it. Teddy and blankie also became dear friends right from the beginning of the day where he clung to them when on my lap and later his hand had to touch Teddy at all times. He would put his hand on top of teddy and then wanted my hand on top of his.

At 4am they had to do blood work again and after three tries hardly managed to get enough to do the tests. James was so exhausted he hardly fought and the only cue that he was still awake was when he said "all done" each time they took the elastic off his leg or arm (only to have them try again in a new spot). After that he fell into a much better sleep and slept "good" until 8am. He has been sleeping on and off so far today. I left him at noon hour, Rob came to take over so I could get some sleep. Shortly before I left they took him off the biPAP thinking that he was doing better. They put him back on the nasal prongs but within five minutes it became obvious he could not handle it, his SAT's dropped and his breathing was up in the 80 bpm again. I left as they said they would need to put the BiPAP back on, I could not handle to watch him go through it again and knew if I stayed he'd end up on my lap again as he prefers mine over daddy's ... and sleep is really a must.

Rob has since reported that he fought the mask and it kept leaking, so they put a new one on. The original one covered only his nose, this one covers his nose and mouth. He finally fell asleep and his SATs started to climb back up again.

We pray that the antibiotics may work quickly to reduce the inflammation and allow him to breath on his own again. We continue to covet your prayers, knowing that the Lord is ever present.

"So do not fear, for I am with you; do not be dismayed, for I am your God.I will strengthen you and help you; I will uphold you with my righteous right hand." Isa 41:10