Cystic Fibrosis, Photos

Update on Joe

As you may have seen on Rob’s Facebook page Joe has been a bit under the weather recently. As much as I love Autumn and Winter along comes with it colds, bugs and infections and therefore more trips to the hospital, more medications and more sleepless nights filled with the sound of our little man coughing.

A few weeks ago we got a call from the hospital saying Joe had grown something in his lungs that had shown up on his last cough swab and he needed to go on antibiotics for two weeks to get rid of it. He was growing Haemophilus bacteria which is a common bug found in the nose of a lot of the population but if it moves into the lungs or other areas of the body it can cause pneumonia or meningitis and bloodstream infections. Despite this he showed very little symptoms apart from a cold and after the two weeks of antibiotics we were hopeful it had cleared up, we are still awaiting confirmation from the cough swab we sent in on Tuesday (it can take over a week for various bugs to show up on cough swab tests).

In the following week after he finished the antibiotics his appetite wasn’t great (not that it ever is) and we struggled to get him to eat a lot. Unfortunately at a sleepover at granny and grandpa’s at the end of October Joe decided he wanted to eat again and appeared to get his appetite back only to then spend the night vomiting.  Over that weekend he was off his food but then on the Tuesday of last week he began showing signs of severe stomach pains and was doubled over in pain before having a very bad bowel movement. We took him to the children’s observation and assessment unit in hospital to see the duty Dr and they diagnosed a tear in his anal canal due to constipation and sent him on his way saying to use sudocrem on his bottom to relieve the soreness. After that he was very irregular with his food and would not go to the toilet possibly for fear of pain.

By Thursday of last week he had developed a nasty cough on top of the stomach pain and again on Sunday we ended up back at hospital, this time to see his consultant Dr Robertson. She surmised that the vomiting and the stomach pain and lack of appetite is from severe constipation caused by his Creon micro which is used to help him digest food. Due to his food aversion issues it is very difficult to calculate the correct dose of creon, which has caused his bowel to become blocked, so he now has been prescribed some strong laxatives for chronic constipation and he is also to have two large doses of lactulose daily and his Creon medication has been adjusted.

On top of that he has a viral infection which causes a productive cough so has been prescribed another 10 day course of oral antibiotics to ensure it doesn’t develop further into a lung infection, plus an increase in his salbutamol inhaler to 6-10 puffs every four hours.

Despite all this Joe is in high spirits and wanted to go to nursery this morning to see his friends. I reluctantly dropped him off this morning with a list of instructions for the staff and my fingers crossed that he will be OK, which I’m sure he will.

Part of dealing with the disease is understanding that life must go on in spite of it, if we stop him doing things because he feels unwell he will never do anything, so he soldiers on and so must we.

Fingers crossed the meds will work and he will be fit and healthy for Christmas!


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