Tag Archive | illness

We are home…again!

I seem to get a lot of people who think Albany is in nothern WA...so here is a map!

We are home again from yet another trek to Princess Margaret Hospital for Children.

The young one had to have a follow-up bronchoscopy to make sure we have eradicated the Pseudomonas from when he was hospitalised with them back in August.

We left Wednesday morning on the 450km trip to Perth to be at the hospital for specialist appointments that afternoon.

When we arrived, we found clinic to be very quiet. Turned out the respiratory doctor we were due to see was away on maternity leave, and the replacement doctor was off sick, so they had cancelled respiratory appointments. But since we (and one other patient) had travelled considerable distance, they kept our appointments, and found us another respiratory doctor that was floating around.

You would think that since there was only a couple of us waiting for appointments, that we would be over and done with fairly quickly…but no. It took the usual amount of time and we didn’t walk out of the hospital until nearly 5pm. But back to the main story…

My son’s lungs apparently sound pretty good, which is good to hear considering he had a nasty cough that was starting to worry me!) but that is what they said when they discovered Pseudomonas the first time, so I’m not holding any stock in that assessment. But due to that cough, he has to start on Tobramycin nebulizers now that the bronchoscopy is finished and we are home (he isn’t allowed to have nebulizer meds for four weeks before a bronchoscopy as the drugs can affect the results) But everything basically rides on the results from the bronc.

The doctor has also agreed to put our daughter on six monthly visits now (YAAAAY) They are extremely confident now that she does not have CF, but because of her history of chronic coughs (she gets croup at least every one to two months, her latest bout of croup lasted about five weeks) they want to keep an eye on her for a couple of years. They are considering the possibility that she may have weak lung/throat muscles (something she should outgrow in the next few years) and that is why she snores while sleeping, and breathes so heavily when awake. We havent been able to get a result from a lung function test from her, but hopefully the next time she does one, she will be able to do it properly and can get reassessed then. They have also said that they will give us some help with her worrying eating habits (but that is a long subject suitable for another blog post) which is a relief.

Vitamin D...main source? The sun...

Back to my son though. Once finished with the respiratory doctor, we saw the gastroentologists. At the last clinic visit, my son had to have some blood work done to check his vitamin levels. It turns out he is very deficient in vitamin D, enough so that a “bit of time in the sun” wont be enough, and he has been prescribed a new medication, Cholecalciferol (or Bio-Logical Vitamin D3), to help boost levels. He will have to have blood work again in six months to see how his levels are going then.

After that, we went on to see the dietician. They were very happy to see that his weight has improved greatly, as the little porker has put on nearly a kilogram in the last three months!! But they had a little bit more “bad” news (I guess you could call it that), my son is also anaemic. Thankfully, he is only slightly anaemic. They aren’t worried enough to put him on iron tablets, but the main reason for that is because they are worried about the constipation side effect of the tablets. It’s a bit of a surprise that he is anaemic as he absolutely loves his meat. We can only try to add more leafy green veggies and eggs to his diet I guess. The dietician did say that it could be due to the fact that he has a dairy protein intolerance, as anaemia is something they see in people who don’t consume enough (or none at all) dairy. But they will keep an eye on it and will give him tablets when/if they become concerned.

Doesn't look like much fun, does it? 😦

A couple of days later, on Friday, the young on went in for his follow-up bronchoscopy. We still don’t know results yet, and we weren’t really given any indications of what his lungs looked like. We were kind of busy afterwards dealing with the aftermath of the anesthesia. Apparently the procedure didn’t go quite to plan, it sounds like he kept somewhat waking, or moving, during the procedure. He also didn’t wake very well, and especially didn’t like it when the nurses came near him. As only one parent can go in to a child in the first stage of recovery, my husband went this time. I could hear my son screaming in the corridor. I could tell he was having a rough time coming to again. When they walked out to go into second stage recovery, I noticed blood over my husband and son. Yep, my son has ripped the canula out of his hand and blood went squirting everywhere, apparently. He lost a fair bit of blood, but is doing ok.

Thankfully, it didn’t take long for him to be “awake” enough for us to leave, but we still had a rough night that night as he suffered spiking fevers and incoherence, something he seems to go through after having anesthesia these days. Two days on, his appetite is still suffering a bit, but he is happy and playful again, though nap times are probably a bit longer than usual still.

For now, we wait on the phone call from the CF team with the results from his bronchoscopy. I have to admit, I’m not confident that we have gotten rid of the Pseudomonas, but I’m trying not to think about it for now. At least we have plans in place should he have to back to hospital to have intravenous drugs for two weeks again.

Please keep your fingers crossed for us for good results!

Bella 🙂

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Over the hump

We are now just over halfway through our pseudomona treatments, and so far so good!

The little man is taking his medications like a treat.  When I tried cutting his oral medication and putting them in the puree, he would shudder every time he swallowed. Broke my heart to see him like that, so I started giving them to him whole (still in the puree) and like a trooper…no worries!

He caught the nasty virus that nested itself within the house, which worried me a little. We all came down with a horrible, chesty cough kind of virus. There was a lot of coughing, spluttering and sneezing going on in the house for a week. The little tacker had no hope of not catching it. But I figured there was nothing else we could do considering the strong antibiotics he was already on. We could only ride it out and hope it didn’t get too much worse.

But now, the moist cough has gone and we are all better (still a few lingering coughs here and there, but nothing worrisome)

We still have another two and half weeks of treatments left before he has another bronchoscopy to make sure it’s all gone.

I will continue to keep you updated

Bella 🙂

PS. Good luck to a fellow CF mum whose little one is having her annual bronchoscopy today. I hope everything goes well! Also, a mega congratulations to another CF mum who recently had a pink addition to her family. Hugs to both! 🙂

Pseudomonas are bad…

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!

Bella 🙂