Patrick Vannan
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| Patrick | Patrick and his brothers |
Patrick’s Story
Patrick was our fifth son being born with no problems and everything had gone well on November 12, 1992. He even breast fed after the birth and things looked fine. That night the nurse came in at midnight dumped him in my lap and said he was disgusting and I was over feeding him. Apparently he was throwing up and that if he was doing it again I should look after him. Nice I was tired and that happens. He did throw up green but when I insisted for them to ng him and check his stomach nothing was there and he was allergic to my breast milk. Even so he had been throwing up bile for two days, he still got discharged. I was slowly going mad at home for two days. He was getting worse and more jaundice all the time. First thing Monday morning I was screaming at our doctor and he finally looked at him and sends us to a paediatric surgeon back to the hospital. From there, we went through several painful x-rays and I could see in the doc’s face that she was very concerned. She had a waiting room full of patients, but never left our side once.
He ended up in an incubator and was critical condition. We had to wait till he was stable the next day for him to have surgery. They figured he had Cystic Fibrosis. Yeah right I told them no way and I was not accepting it. They said I was being ignorant and to face the facts. Well they got rid of some meconium and undid the obstruction. He had survived his first surgery. We again waited ten days more and waited for him to poop, but nothing happened. The surgery once again was scheduled. I still couldn't hold my son It was heartbreaking I think I had cried for days. Well they put an ileostomy in and hoped that now we would be okay. I was happy he was still alive. But still nothing. Well then more x-rays. Unfortunately the technician stuffed the barium down both ways nothing was going through and Patrick was vomiting violently and dehydrating even faster. Now we were running out of veins. We were desperate and even I got them going in his scalp with the surgeon, but they would still blow after 5 minutes. Well it was to the point that we maybe had a few minutes or we lose him. Finally a new anaesthetist came up with the idea not putting him to sleep and doing a dinky cvl in his neck. They only had one catheter in the whole hospital that was small enough. Well he for some miracle survived that too.
We all cried after that even the doctor but still nothing was working and Christmas was upon us and every one was on holidays leaving us waiting for the docs to come back. The children’s hospital would not take him till January. Meanwhile the paediatrician did not have a clue how to keep him hydrated nor balance his TPN. Finally a week into January we got the word that he could be transferred downtown. He was born 9 lbs. and now weight less then 7 lbs. at two months of age. We got to get him off the IV for only a few hours and took him down ourselves. It would have been again longer wait to have an ambulance take him. Once there we got blasted with residents that told us they would check for cystic fibrosis. Yeah here we go again. Well the sweat test were negative and glad to know that. But now they would check for HD. They did check by doing rectal biopsies and they confirmed what we had suspected, HD.
Now the time came for more surgery. We were not sure if he could handle the surgery even being nothing left of him other then skin and bones. Now they left us with a choice if there were no nerve cells present at all would we want him to live. It was devastating and I called the other surgeon who told me to trust them and he would have some bowel left. Well he did have about 2 1/2 feet left of good bowel. And again we hoped things would work. But now we were getting massive diarrhoea and it was becoming an even bigger problem. Then one night they dropped him off the scale and he lost his CVL when he went flying across the room. Miraculously he got away with not even a scratch. Well we got a new CVL the next day. I guess they were being careful now. He finally slowly started to gain weight and got his TPN and hydration in check.
Well after two more revisions and fighting for home TPN teaching we left the hospital in May. But we were in and out with one infection after another. At one point he went into fibral seizures and we thought we lost him for sure since they had send him home knowing dam well he was burning up. God I was so mad it almost killed him again. That CVL ended up being pulled because it totally solidified one day. I could not clear it any more. Turns out it had been faulty from the start and that had caused all the infections. They never had seen anything like it. During all of this we still kept doing more bowel surgery on the stoma, trying the Kimura patch and so on. My husband and I finally decided that after the tenth surgery we would stop counting. It has been a continuous struggle of trying new things like growth hormones and such.
This year for the first time he got almost off TPN. We enjoyed our vacation but he also came down with esiophilic gastro enteritis, yeah add another mess to the equation. Then it became apparent that the colon and part of the small intestines we had left in needed to come out. It was all with HD and it was starting to show sings of breaking down. It was not useful for him anyhow and he had more stomas then we needed to have. Again we had surgery. To all our surprise he also had an obstruction in his working bowel again. He had not shown any signs of problems for the last year and it surprised us all.
Once again he is not working and obstructing. I know his stoma is too tight and that he cannot eat for now. Once again we are on full TPN and it will be a long road to get where we were before we opened this can of worms. Its been a constant struggle and fight with the doctors to believe that things were not right and to fight for the right to have him home and for them to trust us. He has not always been helpful with things like chewing his IV lines and almost bleeding to death or trying to disconnect himself and such. But all through all the many surgeries and tortures we put this child through, he is happy and beautiful and thriving and if you saw him walk past you, you would not know the pain he has endured in his short live. Thanks to my family, a great surgeon, who unfortunately now has retired, a good GI and nutrition doctors, some great supportive nurses that seem to call him as much my son as I do, he has survived. If he starts to feel sorry for himself it does not take long for his four brothers to set him right.
I could write forever all the scares and hell things we have gone through but I can't bare to think about them all. I have written them down in a book for Patrick and if he grows up he can read them. I did it more to put it past me and to have the strength to fight on. It’s nice to belong to a group where you have support and can talk about it. Something I was really missing in the early years. But I learned to ask question no matter how stupid and to learn as much as I could. But most of all I follow my instincts they have never been wrong.
Well sorry it was so long but it’s actually a condensed version.
written by his brother Mark