Wilhelm Hadland Blair
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Dad's Story
We have a little boy now a bit over 1 year counting from scheduled date. He has been trached since December '98. He had a bit of a hurry to get out of mom's secure hiding place, and even the neighbors never noticed my wife was pregnant.
He was taken out at 26.3 weeks by a cesarean because of his mom had an acute liver malfunction, this was not the "ordinary" pregnant infection, but something called Help Syndrome.
When she was hospitalized at the intensive ward, I was allowed to follow her all the time from registering, under the cesarean (48 hours later) and till she was on the postoperative ward. I have a daughter now 13 years old and was participating in the labor then, this was definitely not the same. It was like vacuuming your head totally and try to think positively when still in shock. Or more like running in to a hurricane, your hair gets really slick but you never knew what hit you.
OK !
We got a boy weighing 750 gram (1.65 pounds) he gave a little squeak when pulled out, and it was a boy. Later on they put him on a respirator (Oscillating). and I went over to visit the tiny little creature. He was very tiny and so small, could fit in to a 2 pint milk container, but he was perfect as far as I could see, (except of course of the little tube taped to his nose.) his tiny fingers and his tiny feet, his whole hand was no larger than my thumb fingernail, his total length was approximately three times a Q-tips length.
But I was a father and it was a boy!!
Time for a Cuban !!
Some days later we learned that our boy had a heart fault, it was a hole between right and left heart chamber, and that they had problems getting him to close the duct, (arteries that bypasses the lungs when he could get necessary oxygen through his mother). (WOW, I'm not a physician, but now I'm really wondering about taking a new study).
We got out of this too and thought this is it, but no !!!!
A few days later we were told that our little boy had not one but two heart conditions and they where not able to close the ductus by means of medication, so they had to do a little surgeon on him. I say do what's necessary for our little boy and do it well. This operation was successful.
And we all lived happily ever after? of course not, this is not an American movie and we are only ordinary people. The story until now our boy was only 4 weeks old, and he have not been trached yet.
They tried to get him off the respirator several times the next few weeks with no luck. He was on this gadget for two an a half month when they thought; may be it would be wise to check his throat for obstructions. They gave him a bronchoscopy and found that he had obstructions in his throat, (I felt that they had been fiddling around for quite some time now and it was in time they tried to do something constructive on our behalf). Now they told us that the only way to get him off the machine, was by doing a tracheostomy on him. I had hardly heard about this thing but understood what it was. We were told that it possibly would not be for a long time, maximum 2 - 3 months. He got trached and we got him off the respirator, But he still needed some extra O2. In late January '99, he went off O2, and some week after he came home for the first time. This was a great time.
His half-sister visited us some weeks after, but she had a "stow away" flu (not RSV thanks god!!), that she contaminated her brother with. This resulted in hospitalization for 4 months and this (really turned out bad) went to his lungs and damaging some of his lung tissue and turning him back on to extra O2.
Our little guy came back from the hospital in June '99 and we could celebrate his first living year at home.
Later on we where told by a neurologist that they suspected him to have some grade of Cerebral Paresis, because of his slow development in motoric matters. (he don't crawl !!) This guy must be delirious (the neurologist), and the worst part is that they told it only with my wife present. In my opinion and in our epicrisis it is stated that any serious messages are only to be told with both parents present.
I am quite sure they have taken a too quick diagnosis and this guy did not even bother to consider he had been laying in bed for 15 months mainly and that the filter and tracheostomy are preventing him from turning over on his tummy and there by preventing him of starting crawling. (He uses a huge filter over his hole and this is a bit uncomfortable for him).
Time goes by with the daily vomiting, suction and O2 concentrator buzzing, rattling and wheezing. Anyone asking me to sign a paper on how a noisy environment turns in to your mind are free to ask.
We are home celebrating Christmas and the New Millennium. Opening parcels with him was great and recently he has found out how to make noise. This is a bit of a relief for me, he is actually able to babble a bit with his filter on, but really starts when we are obstructing the hole.
I decided that in January I will try to get him this Passy-Muir valve. It will be a real treat for him and as far as I could see at their web site it is a bit shorter than the gadget we are suffering with and also it can be delivered with a connection for the O2 hose.
Will keep in touch. Thanks for a fabulous site. Have a prosperous New Year!
- Regards from Wilhelm, Astrid and Jørn A. Blair, Oslo, Norway
