My mother in law is here, staying with us for a month to help out. This way, maybe, I can get in to the hospital to see my Dad more often, or maybe even just go over to my parents' house to help my mom. My mother in law, or Ma, as I call her, means that my house will be thoroughly cleaned, and unless I twist her arm, I won't need to do any cooking.
My Dad is still in so much pain. Yesterday (FINALLY) the rheumatologist came to check him out, and they drew a considerable amount of fluid off his knee. I am so hoping they can find some meds to help him. The fentanol (sp?) he's been on just hasn't made a difference. Yesterday I was there when they turned him, and I don't think agony is the wrong word to use. The nurse asked him "Do you have pain everywhere?" and my Dad replied "I sometimes wonder!"
On the plus side, no sign his leukemia has returned. And he does seem to be very slowly getting clearer in his speech and thoughts. I know he just wants to come home so badly, and it's so hard to see him in the hospital and in so much pain, just longing to get back home...
Joel continues to do well. I am grateful for the CPAP and for the oxygen we have from Palliative Care as we have now used it too. There was a night that I couldn't use the CPAP machine on Joel. (Because I screwed up his night meds and didn't give him his morphine, which caused him to have muscle spasms and be unable to sleep, and.... well, long story) He was fine on his side that night, but the next day he didn't really nap either, it was just an "off" day. By night he was sound, sound asleep and breathing very heavily. I put the CPAP on him, but his O2 sats would just not come up. I waiting 2 minutes and then said forget this! And we put him on the oxygen.
We only needed to use .5 litres and he did just fine for the rest of the night. But I think I learned a few useful things. First of all, I really do think that the breathing problems are cumulative. They might not show up right away as low oxygen sats, but over time I think he just gets too tired. Or if he has a bad day, etc.
Secondly, it is more evidence that he does have trouble enough at night to need support and it is NOT ALWAYS connected to being sick or to swelling in his airway. He's been fine every since the night of the oxygen use back on CPAP and his merry, happy self. Just that one night of oxygen was enough to pull him through.
Lastly, I learned, (or rather sort of confirmed what I already suspected) that there were very likely times that Joel's oxygen was low at home but we didn't bring him in to emerg. Yes, his breathing was heavy, but not particularly rapid, and I think there have been other nights like this where we waited until it got WORSE before we took him in. Or maybe, more likely, by about 4 am I would have woken up to that rapid breathing and loud stridor and then we would have brought him in, but he'd have had hours of low oxygen and struggling to breath. I LOVE the monitor!! LOVE IT! Sure, there are other things to assess when looking at his breathing. But the monitor is a useful tool, and more importantly, it can be relied on to WAKE ME UP! Unlike heavy, fast breathing, which is really easy to sleep through.
We had an appointment with the ENT yesterday, and Joel's tonsils and adenoids are very normal (on a scale of 1 to 4, his are a 2). Once again, we could clearly see Joel's epiglottis was falling back and obstructing his airway when he breathed in. The ENT doctor was so relieved that we all agreed surgery was not necessary, he couldn't stop smiling. He really is a very nice doctor and I know that he really was terrified of doing such a risky surgery on our little boy. So he promised to send a copy of his report to respirology, which I am hoping makes them feel just a little bit better about sending home a CPAP and oxygen monitor.
I was absolutely so very grateful for the home oxygen. I didn't expected to use it at night at this point, since we had the CPAP. It saved us a late night trip to emerg, and possibly a hospital stay as well. And once you are in hospital, it can be hard to get out again!! It just got us through the night, and Joel has been just fine since then.
That's just a little "update" for those of you who are interest. :)
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