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.

Thursday 29th November 2007 - Heartcat day 2

Of course he did not eat properly. So he woke up at 05.00 hungry like a tiger. I heated up some water for him (eeeewww) because he was allowed to drink water until 06.00. Thankfully it helped and he was pleased. 5.30. I prepared his bath. Poor baby was crying thinking mum has gone even more mental when I put him on the nursing table. Finally in the bath he was happy again. I cleaned him with the disinfected soap-foam on especially his groins as they instructed me to do. Of course he became angry again when I had to hold his hands placing the sedative cream on, I wrapped plastic bandage over and bandaged his hands properly. He was no happy chappy. I packed what we needed for the day and we were off at 6.30 to the hospital. As the day before were placed in room 10 with the couple from the other day. We chatted for a bit and the staff came in to bring the other baby boy to op. We wished each other good luck in the future. Anaesthetics’ were late in to work so we had to wait an extra half an hour. Finally the staff came in and gave James a sedative. I carried him to the x-ray unit with James relaxed deeply asleep in my arms as I had asked to do. I wanted to put him on the stretcher myself and be with him when they sedated him completely. Holding his little hand. Carrying a totally relaxed half naked James in my arms gave me flash backs of the night we brought him in. So it was good for me. I was not a slightest bit worried which was good. I chatted with the nurses and when we came in to the pre room I was greeted by a nurse I met before. Some giggling was going on and the research nurse who handles James´s vaccinations came in and waited for James to be properly sedated so she could take a nasal test on him. We cracked some jokes and my hero stepped inside the door. Mr Per Westin the chief of anaesthetics. I almost jumped up from the chair but greeted him with a big smile asking how he was doing and nice to see him again. He is a very sweet man, very empathic and takes his time to explain things. We went in to the x-ray room where they would do the catheterisation. WOW!!! Why did I not bring the camera? I certainly will next time!!! Big tv screens by the stretcher and a monitor room. Really impressive. I lay down our little precious and the anaesthetic nurse asked if I would like to be there when they sedated him. Of course :o) She stood by his little head prepared with a (Mask) Per said James could give a smaller reaction to the drugs because it usually stings a bit. He started giving him the drugs and we chit chatted a little, Per and I. James did not react to the drugs, he was sedated and the nurse helped him breathe a couple of time with the (Mask) and kissed James goodbye and I said we loved him. I thanked Per and the other staff and we were off. On the way out the two nurses and I pasted by the cardiologist Milad with a coffee in his hand, we nodded hello and he went in to do his work with James. Milad is a doctor I don’t really click with and I struggle to bite my tongue sometimes but he is an excellent cardiologist and it is the main thing of course :o). The nurses asked how I was doing if I felt anxious because they thought I seemed so calm. I said I was totally calm, I knew all the staff and I trust them. All my concerns I had I struggled with the week before so I was prepared. I was calm the remaining two hours until post op called. Everything was fine with James but I half ran over and could not see him quickly enough. Of course I was so eager to see him that I forgot his milk and I had to run back. I called Nigel to tell him everything was ok he was worried at work of course. But I had told him he did not have to be at the hospital, it was a minor thing and I felt calm being there alone. Blimey, it is like home now, well almost. James ate a tiny amount of milk, he was anxious and still on the drugs and painkillers. He had a pressure bandage on his groin which we checked regularly so he would not start to bleed. As time passed by they released the pressure more and more on his groin. James fell asleep quickly in my arms. After not having more than two hours of sleep so did I hahahaha, Hopefully I did not snore :o) in the chair. After two hours we were back on ward 67. James was really tired during the day and did not eat much. Well poor boy was sedated the same day, who would feel like eating instead of sleeping? When it was 18.00 I wanted to go home. Sv past by and said we most probably had to stay overnight because James was too sleepy. I grinded my teeth and thought it was ridiculous. Jenny the nurse came up to me, a young sweet nurse. We usually chit chat and she asked what Sverrir had said and I said he wanted James to stay overnight, she shaked her head and agreed on the ridiculous part. James had eaten several times but small amounts at the time. I was not worried at all. We talked for a bit and Jenny went back to the reception. Milad came in to the ward. After a talk to Jenny Milad came up to me and asked how James was doing. I told him and he said he had heard I wanted to go home if possible. I said yes but Dr Sverrir wanted James to stay. He said you live so close to the hospital so you can go home and I take the responsibility. Yeeeiyy!! Thank you Milad! Sometimes it is good with a doctor with an attitude :o). I thanked Jenny for bringing it up with Milad. But I felt a bit guilty thinking of Dr Sverrir even if it was Milads decision to go over Sverrirs head. I called home to Nigel and said we were on the way home. Time was then 20.00, I was exhausted and James slept calmly in his car seat.

Wednesday 28th November 2007

Heartcat day 1
James and I returned to home sweet home ward 67 on the hospital at 10.00. One day full of examinations and waiting in between of course.
We were sharing the room with another family during the day. Their baby boy was waiting for his operation which would take place the following day. They were a nice couple with their first child. Their baby had a “smaller” heart condition and would be considered healthy after. We had some nice chitchat and then it was time for blood tests on James. James was a really good boy, the staff made the best of it. It is not easy to drain blood from a baby as it is and with James it is harder since his circulation in the extremities is not normal and the blood has a lot more blood clots to make sure he oxygenates properly to compensate the less oxygenated blood in his system. Many times the blood comes so slowly they have to start over again. There is usually no local pain reliever it works well with just some glucose orally. This time James became really cross. It is rarely he reacts to the puncture but reacts when they later have to hold his little hand and he wants it back of course. James has two levels, happy and cross. He is really a tough little boy! Anyway blood pressure test and saturation test (oxygen level) followed the blood test. James has very good values. The doctors wants him to be between 75%-85% and he is usually around 85-87%.If he is not cross then he goes easily down to 60% going from purple and blue in his face. Well, after all those tests it was time to do the x-ray of heart and lungs. So we had to rush over to x-ray2 unit. I have been in there some times now and know the procedure and how to hold him. This time they gave him contrast orally which was a thick white fluid. Of course it came outside his mouth as well, which made him look like a mini father Christmas. All went well and efficient and they were happy of the quality of the x-rays.
Not long after, after a quick nibble for lunch, it was time for the heart ultrasound. A young cardiologist named Sverrir did the examination. He is really compassionate and easy to talk to, which is important to me. There is nothing worse than a dry stroppy doctor who has to point out and show off he is a doctor. I have met too many doctors over the years so I have no problem questioning a doctor and a dry one can’t take it. It makes me feel uneasy when I can’t be my giggly self and have some jokes in between, which of course usually is sick ones. I asked Sverrir about James nails. I had noticed (like everything else about James in tiny details because of worries) he has a white striped mark on all his nails exactly in the middle and in the same place as it happened at the same time. So of course I showed him and asked him if it was because he might be having a lack of calcium. He scratched his head and said it must have happened when James was seriously ill and his vital organs closed down. So the marks he has is from the beginning on his nails he had when he was severely ill because of lack of calcium. Sverrir was pleased with what he saw on the scan.
The staff asked me if I wanted to stay overnight since James was first with the Catheterisation at 8.00. I said no since I had not planned to sleep there since no one had said I could, and we just live 15 minutes from the hospital. I had the choice to give him a disinfectant bath early in the morning at home and put pain relief cream on his hands to prepare for the needles. I said I could do that myself and we could go home. We cake home between 19.00 and 20.00. I stayed up until 02.00 to make sure he ate just before the last time he was allowed to.