Back to reality

For 2,5 months we have been living in a happy bubble. Our bubble is a cottage on the Swedish west coast. There, life is simple, you wake up, eat breakfast, plan the day, which means either go to the lake for a bath or out in the forest to pick berries or mushrooms. This summer Elliot has developed incredibly. His new outside favorite is to climb; he climbs trees, stones and anything that comes in his way.
Since 2 weeks we are back in Stockholm and the ordinary life and today it was time to go for a routine check at the hospital. The nurse who usually takes care of the walking test was ill and it had to be cancelled. The heart and lung check with ultra sound gave (as usually) no hints of Elliot’s condition regarding the lung pressure, but the doctor’s short summary of the ultra sound was ok: nothing had become worse during summer.
There is a big playing room whith lot of toys and games at the hospital. The image shows Elliot and Marie playing table hockey which is a popular game in Sweden (we usually stay a while at the hospital to play after his doctor visit, this strategy has been good, now Elliot feels it is ok to go to the hospital and he looks forward to go to the playing room).
Right now I’m a bit worried about the new flu. I’m not alone in my worries, media have gone mad and it is happy days for a few medical companies. I'm worried about his lungs. I would like to go back to the cottage for another month. Our doctor hopes that Elliot can have his first vaccine injection in late September or early October. So it is at least 3 long weeks…
It’s only 5 weeks left to our third baby if everything goes according to the plan. Marie is now very pregnant;) Both me and Marie believes it is a boy.

A day at the hospital

Today we took both Elliot and Olle to the hospital. First Elliot did the condition test and this time it was positive, his sat before the test was 96 and the pulse 86 and after a 6 minutes’ walk the sat still was 96 and the pulse not higher than 90. This was the third time he did this test and this time he walked 328 meters compared to 250 meters the other times. The heart and lung check with ultra sound did not say anything new; the doctor only mentioned that the right heart chamber not had changed which is positive. The doctor also looked at Olle with ultra sound, this just to make sure that he not has the same symptoms as Elliot. Olle was okay so this was probably the last time Olle had to do this test.

Right know I’m tired but happy, these days at the hospital takes all my energy. Hopefully we don’t have to return to the hospital before August/September. In mid June we will go to our cottage in the Swedish west coast and we will stay there for more than 2 month. It will be luxury to be all together for such a long time.

We are not alone

Right now a lot happen, I heard from another parent that there is a big international study going about children and PH. I think there is a new medicine that is being tested. I wrote a mail to a professor in Sweden who is a specialist in PH and who is involved in this study. In the letter I described Elliot’s history with PH and I got a quick answer. The professor’s opinion was that we have the best treatment there is to have.

The day before yesterday I made my first entry to the Nordic message board for PH. I have already made contacts via this forum and it feels great to know that you are not alone in this mess. I have also found the message board that PH Association has and it was a positive discovery to find that they have a forum for parents with children that have PH. You will find the links to these two boards in my link list.

Yesterday I paid a visit to my ear doctor and this was not a positive meeting. I now have Ménière’s disease (tinnitus, loss of hearing, dizziness) on both my ears. I got diagnosed for Ménière on my left ear in 1996 and now it’s on both my ears. My belief is that it is Elliot’s disease has to do with this negative progress, I worry a lot and this affects my hearing.

Springtime in Stockholm

It's springtime in Stockholm and all over its green. It's really beautiful know. Since our last visit with Elliot to the hospital in February we have had a really good time. Both I and Marie have been home full time with our baby boy Olle and Elliot have been okay. When Elliot is playing and running he has to do frequent stops because his "legs are tired" as he explains it. But beside of these symptoms and that he has to take medicines three times a day we don't notice his disease. But still we worry a lot...

Our next visit to the hospital will be in late May and the routine is that he first do a condition test. He walks for 6 minutes and before and after the walk a nurse checks his pulse and saturation. Then the doctor checks his heart and lungs with ultrasound. But without catheterization it's difficult to say something about the lung pressure. The latest cat was made in December 2008 and the outcome was negative, Elliot has not responded to the medicines, but we still hope for a positive change.

During this spring I have got in contact with some other parents who have children with PAH in Sweden. But since the disease is very rare my hope with this blogg is to get in contact with parents outside Sweden.