Zoe's new lung routine includes inhalers. Initially she pushed the mask away and fought us but now she does a great job taking deep breaths while we count.
Zoe saw the chest team at the hospital for the first time two weeks ago. Basically this is what was discussed and decided:
- Zoe has chronic left lower lobe findings on her chest xrays. This is nothing new but the doctor wonders what exactly is down there. Is it an anatomical thing that Zoe was born with, a result of infection, or a stubborn infection that just won't go away? Initially the doctor recommended Zoe going to the OR for a scope of her lungs and a biopsy of that area. We got a call the following week to say that the doctor had reviewed all the xrays with the technician and with another doctor and since there has not been any changes, they want to hold off on the scope and biopsy. This was a relief to us since Zoe getting anaesthesia is stressful due to her very poor veins (it took two hours for them to get the bloodwork after the appointment, so who knows if they ever would have been able to get an IV in to make anaesthesia safer).
- Zoe was prescribed two inhalers to move the mucus around and open up her airways. We were initially told to start the inhalers in August (the one takes a few months to have effect) and that would hopefully help with the winter pneumonias she always gets. Then, we got a call the next day to say that the bloodwork Zoe did after the appointment shows high white blood cells which indicates an infection so start the one inhaler right away and if she has more symptoms then go to the doctor and get antibiotics. Hmmmm, this is always a tricky one- what is more symptoms when your child already turns purple and refuses to eat some days? Not to mention the pesky irregular fevers she gets from time to time. But we know Zoe well enough to know when she needs to be seen by a doctor so we were ok with that plan.
- They did some other immunology tests and those seem to be normal. They also did a nasal and throat swabs and we got called the end of last week to say that Zoe tested positive for a staph aureus infection. This is the most common cause of bacterial pneumonia. So although it seemed that these pneumonias were viral and therefore antibiotics didn't do anything for them, it seems that this time or maybe last time and it is still lingering, Zoe is growing some bacteria which could have caused the latest pneumonia. The one big bummer about Zoe being positive for staph is that once you are positive it usually stays in your system. It is the type of thing that many people have without knowing it and is usually no big deal. However, if could cause repeated infections including pneumonias and possibly endocarditis which Zoe would be at risk for because of her heart. But hopefully it never comes to any of that. We were told if Zoe is showing symptoms again than she should be given antibiotics that would treat this type of infection. So far though, Zoe is doing fine.
- New chest physio routine- a therapist came in and showed us a new/better way to beat our child :) We are supposed to do chest percussions twice a day now. Zoe has been doing really well with it so far and even falls asleep if she is tired. The new routine is similar to what we have been doing but we have to pat her a bit longer than we were.
- There were some other annoying little findings like swollen lymph nodes so now she has to be tested for TB although everyone knows she doesn't have it but I guess that is protocol. And the doctor ordered another test (a sweat test to look for something we are pretty sure Zoe does not have) and follow up in three months.
I think that is everything. I like to post the info from the doctor's visits because I find it is a good way to get the accurate info to everyone at once. Plus it is a good record for us when looking for info about when Zoe was sick, what was said, etc.
Zoe, like many typical children her age and most, if not all, of the children with 1p36 has had sleep issues for a long time now. They seemed to have escalated in the last few months and it has been very hard for all of us. Zoe screams all night (correction, not all night but until about 4am) which means she is exhausted in the day and we are exhausted because it is very hard to sleep when she is crying like that. We worry that she is stuck in a corner of her bed or she is in pain but that is hard to assess when she cries all night.
We have been waking Zoe in the morning by a certain time and limiting her day naps and this does seem to be helping. The first week of the new routine Zoe was exhausted in the day but still screaming at night. Now Zoe seems to be back in her old routine of waking frequently in the night but playing quietly until she falls asleep again. Some nights it does take her about two hours of crying to fall asleep. But that is much better than the 8 hours of crying she was doing recently. The paediatrician put in a consult to the sleep team so we will see what they have to say.
Zoe sleeping in her new bed (rail is in the down position). She is getting to be such a big girl!