We recently returned home from Perth where my son had his CF annual review…which didnt go terribly well.
The doctors were slightly concerned about his poor weight gain over the last few months. However, once they heard that during this period, he had about three weeks of a gastro bug, on and off, they weren’t terribly worried, we just have to work a little harder to get his weight back on track.
He has a few new exercises to do during physiotherapy, as he is now at an age where he can start deep breathing. They don’t expect too much from him yet, but more jumping around, tickles and blowing bubble are happily prescribed.
The bronchoscopy on the final day of annual reveiw was a massive drama. First off, I hadn’t received the usual phone call for fasting times from the hospital, and I thought I had worked the times out correctly when I gave him a bottle of milk. I worked the times out wrong, which meant theatre had to delayed by nearly two hours.
When he was in the second stage of recovery, the young one started screaming. He was hysterical!! The nurses felt that it was like he was trapped in a nightmare as he got worse when anyone came within view or spoke, he would just scream harder. After an hour and a half of this, the nurses felt they should call the anethetist back in the hope to sedate him. When they finally tracked him down and he arrived, it had been two hours of screaming!! The doctor wouldnt sedate him however as his lungs werent in a good state and he didn’t want to take the risk of breathing difficulties from sedation….which meant we just had to ride his extreme (and apparently rare!) disorientation. It took nearly two days for him to completely get back to normal.
When the respiratory doctor spoke to me about the procedure, he had said that the lungs didn’t look so great, but they would have to look at the test results . He said there was a possibility that we would have to return to Perth the following week for treatments. I kinda figured then that we had reached the point where Pseudomonas (CF super bugs mentioned in previous blog posts) had entered his life. A gut feeling told me that we would be returning to Perth.
So when I called the hospital back after a few days for test results, the CF nurse told me that he had been flagged for Pseudomonas, but they wanted to watch the samples for another 24 hours to be sure. Yep…the next day, a phone call to confirm that he had them and he needed to return to the hospital to start intravenous antibiotics as soon as possible.
It has been bedlam trying to get organised as my husband is on the other side of the country at the moment for training. Getting a hold of him to tell him the news was a mission in itself! My son and I leave for Perth tomorrow to be admitted into Princess Margaret Hospital for Children, I will try to keep you updated
Now, I know you are probably sitting there wondering “What are Pseudomonas??” Well, to be honest, I can’t really answer that properly right now. I could spout off all this stuff, but I have no idea if its accurate. All I know, as my title suggests…they are bad!! If untreated, they can destroy lung tissue, causing breathing problems, decreased lung function, and in worst case scenarios….death. There is no way of preventing it, and it is very common in CF patients. It can be found in water, food…all the common places.
I did something I know you aren’t meant to do, and I googled it. I had to stop myself because I knew that what I might be reading may be out of date, or different information due to geological location. I found this article, which was published earlier this year, which may help answer some questions.
My son doesn’t look sick at the moment. He is running around like a headless chook and eating everything in sight…then asking for more! He has a cough at the moment, which gets a lot worse in the cold air. This is the only indication that there is something going on in his little body. They said it may explain the poor weight gain.
But as I said…I will try to keep you updated over the next two weeks that he is in hospital for, but I’m not sure what the likelihood of that is.
Wish us luck and good results!