Sunday 2nd December - Gastroenteritis

N caught the stomach flu then later Et and C. James started on the Sunday. He kept vomiting several times and he started to have really bad colour. Of course I called in to the hospital and they asked me to go to the child ER. They knew we were coming so James was showed into a room immediately. His saturation was lower than usual so he was put on a drip at once to treat it. James was totally exhausted. Not everyone has met and treated an HLHS baby before. James was in quarantine with his own room and own entrance from outside. Everything to make sure the virus would not spread outside the room. When I needed to go out from the room to grab something to eat one of the staff would sit by his bed. One of those times a sweet assistant nurse stayed in the room. She was about to take his blood pressure anyways. When I came back into the room I could hear James crying whilst I washed and disinfected my hands in the middle room. When I came into the room the nurse held James in her arms and gave him oxygen. She looked really concerned, she leaned on her way to push the alarm button. I said oh please wait and I went up and looked at the saturation meter. It said his saturation was 73 and I said “no worries he is doing fine”. She looked at me and asked” he is”? I explained he usually has a saturation around 75-85, but when he is upset it easily drops down to 65% and he turns blue and violet. She had not been informed and I did not think of it myself. I felt bad for her since no one had informed her, not even me. James was supposed to have his dose of captopril (blood pressure lowering) increased on the Monday-Wednesday but of course they had to reschedule it. Thankfully the wards have some nice staff to chit chat to or I would go really mental. Honestly, how fun is it in a hospital?? Too much chocolate being stuffed down, too many magazines bought and not even mentioning the number of phone calls, but it is the best way to keep people informed of what is happening. During the Monday I had devastating news about an unbelievably special, beautiful little sweetheart. He had died between Sat-Sun December the 2nd . Absolutely heartbreaking news :0( all my thoughts was with his wonderful parents. They had been in my thoughts for a long time just as their little angel. The days past by in the hospital and a week after signing in James was considered recovered and we could thankfully return home. It is being without the other children which is tearing me up. The guilt feelings. They understand I have to be with James but a mothers guilt feelings are hard to rub off. Nigel came to see James before going to work and after work. He popped by to give us a kiss each or two ;o)

Vaccinations and checkups.
James was eating by himself from the bottle. He gained weight and followed his own weight curve. James is as you know into this program for RS virus vaccinations. The research nurse calls every week to check up how he is. Everything is reported to the USA and put into his logbook. James is at the hospital one day every month to have his RS-vaccination. Everything is noted; blood tests, blood pressure, weight, temperature and if he has a cold etc. It takes a couple of hours each time. Annika need to call USA to push in James details on the phone and she receives a number back which she gives to the pharmacy to order the vaccination. In that way she does not know which kind of vaccination James has, the old vaccination or the new one under tests. James has his contact nurse, Elisabeth. She is just wonderful, a great support. She is a nurse whom I can call if anything is up with James, if I have questions or the doctors need a little kick in their backsides. Seriously she is a really important link to us. We also have contact with nutritionist Lotta, she helps me count out how much James needs to keep his blood volume in his system to keep his saturation as good as possible. If James looses a lot of fluid for any reason or he does not have the strength to eat enough, too little fluid goes around in his blood system. Then he does not have enough pressure to make sure blood goes around throughout his whole body. If he does not have enough fluid in his system his chamber walls collapses and James saturation drops rapidly. His heart has one pump out of two. Right now his heart does two jobs instead of two. It both pumps the blood to the lungs to oxygenate his blood and it pumps the blood out to the extremities around his body. So in case he is dehydrated his heart has to choose which way to go. Either it concentrates to pump most of the blood to the lungs, which in that case his body is not supplied with enough oxygen and he starts to build up fluid in his body since he won’t wee enough and get rid of it. Another scenario is; his heart pumps most of the blood out in his body and avoids the lungs, of course then it is not much oxygen pumping around his body and his saturation drops. After the next operation his system won’t be as dodgy without a certain amount of fluid in his system, but after the third operation it is back to be very important, or his pressure lowers. I´ll write more about it later.