Here is the sequence of events as I remember them. Sunday night was a bomber. For some reason the day before I have to go to work - I usually don't sleep very well - although on Saturday night I was able to. I had already schedule to take one of the vehicles to the dealer to check out the speedometer so the plan was that Gabby would take the vehicle in with the kids and then head up to Stanford for Jonathan to get a blood draw. The blood draw was for labs for his admitting into the hospital later that day. Of course with our not sleeping well (yep - Gabby too) the plan got screwed up. I think I got up around 4:30 am and Gabby couldn't go to sleep until 5 am. What ended up happening was that I took the vehicle in to the dealer and then drove up to the office. On my way to the office I dropped off Jonathan's blood sample since we are (sometimes) allowed to do the draw at home. This also means that Gabby got a chance to catch up with her sleeping while I was out.
Later in the day we found out that although Jonathan's counts were good - his hemoglobin level was less than 10 so he would have to get a blood transfusion when he gets admitted. By 9 pm we had reached to the hospital - Gabby and kids coming from home and I was coming from San Francisco. As is the (new) norm - I spend the nights with Jonathan - so I figure Gabby must have left around 10:30 pm with Arielle to head home. I slept soundly until around 5:30 am when I found out that Jonathan already had the blood transfusion and that he had spiked a fever around 5 am.
Spiking the fever was a bit strange - especially since he didn't start the ch14.18 and I was hoping it was not another bacterial infection. The two nurses I asked didn't have a clue what could be causing it and it wasn't until I had an informal chat with the pediatric doctor (senior resident) did I realize that it could have been a reaction to the blood transfusion. I must mentioned that by Sunday - we had started round the clock dosage of Zofran to prevent Jonathan from having an episode of vomiting.
Tuesday night was a bit rougher - for Jonathan at least. They didn't start his ch14.18 infusion until after 10 am - which meant he didn't finish until just before 8 pm. By the time I arrived at the hospital it was just after 8 am and the interesting things I noticed was that his pulse was hovering around 175 and his pulse ox (amount of oxygen his body is getting) was hovering around 92. Every so often his machine would beep - signaling that one of his measurements have crossed a threshold and for the next two hours I was thinking it was his pulse rate but later found out it was his oxygen rate.
As an aside - the interesting thing about the monitoring machines is that when it goes off in the room - it also goes off in the nurses station. There have been some instances in the past where we could ignore the alarms - and usually what happens is that we change the threshold values - and depending on the nurse you get it's easier to get this done that others. The funny thing is that if you get one of those hard-arse nurses who don't want to change the threshold value - after getting the alarms going off all the time in the nurses station - it normally 'annoys' (I use this term affectionately) the senior nurses which forces the hard-arse nurses to make the change.
Anyways - getting back on track - Jonathan's situation was not improving and his oxygen rate was hovering around 90 with his pulse rate climbing to 180 - sometimes peaking to 190. The major concern was the oxygen rate because we had to make sure his body was getting enough oxygen. I wasn't really concern until a nurse came in and started to check out Jonathan. She decided that she'll start some oxygen going by sticking a tube in a cup and putting it near his face so his body will get pure oxygen to breathe to try and increase the pulse ox rate. At one point in time Jonathan was actually holding the cup to his nose and I guess he got tired of it that he finally decided that we can use the breathing tube to deliver the oxygen directly to his nose.
I was kind of glad we were able to make the switch - but as with all things - it's better than Jonathan decided we should use it rather than forcing him. We slowly got the oxygen rate up but it required Jonathan staying on oxygen for the entire night. His pulse rate was still high and we believe that's because of the fevers he's having. The other news I got last night - around 5 am this morning - was that Jonathan's blood culture grew out a positive for a bacterial infection. So here we go again with the antibiotics and dealing with another infection right in the middle of ch14.18 transfusion.
I should point out that since yesterday evening - Jonathan has been sleeping - probably because of a combination of the morphine and adivan - and probably because of the amount of stress his body is under. It's good that he's resting through this - but it's painful to see because I can clearly see he's weak and under stress with the treatment. The other thing that happened early this morning was that he started to complain of leg pain again - but this time I know it's because of the ch14.18 and not because of increased tumor activity.
The concerning thing is that usually - Jonathan doesn't get hit with the side effects until the third day. What's disconcerting is that it's happening only after the first day - so I'm not looking forward to tonight and the next two nights after that - because I know it's only going to get worse. What's been interesting is that I'm not phased by any of this. I was thinking to myself - last night - that a year ago if I found out that Jonathan had to get oxygen - I'll be freaking out - now it's like - no biggie. The good thing is that I like the doctor we have in the nights - probably because he is a senior resident - so he isn't spanking new - and he doesn't feel like he knows it all : ).
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