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.
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.
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!