It's around 7 am on Wednesday 26th January - and I've had the worse possible 12 hours that I could ever remember. The strange thing is that I survived it and I know what I went though last night is nothing compared to more nights to come. I'm tired as can be but with all the drama - I want to make sure I write this down - because maybe it may help me in the future.
Yesterday they started Jonathan on a new pain medicine - so they replaced Morphine with Dilaudid (spelling?). His first dose was around 4:30 pm and the doctor's orders were for him to receive it every two hours. Well this new pain medicine worked very well. Unfortunately, and not due to the pain medicine, by his third dose, around 8:30 pm, his vital signs changed. His heart rate was too high, his oxygen rate was too low, and his respiratory rate was too high. The nurse started to give him oxygen but Jonathan didn't want the mask on his face so we held it close.
The pediatric doctor on call came to check out Jonathan. His vital signs are still fluctuating - not alarmingly - but enough that it warranted some concern. An x-ray was called so a portable x-ray machine was brought in so that it could be done on his bed. During all of this Jonathan is complaining of pain in his stomach and doesn't move very much - so the possibility of bed sores could eventually occur. There was a moment of time I was alone with Jonathan and I'm observing him and I realize that something doesn't feel right. I start to panic and I breakdown (not literally) and start to cry. The nurse comes in and she says that he needs to take his dose of Tylenol but Jonathan spat out the last dose around 3:15 pm because he doesn't like the taste - and unlike the pain medicine which is given via the IV - the Tylenol is given orally.
Jonathan did not want to take the Tylenol so the other option was to get another nurse to force him to drink it. I'm pleading with Jonathan and begging him to take it. During that course I start crying again and I turn to Jonathan and beg him. No dice. The nurse leaves to get another nurse. When she is gone I ask Jonathan again - and he agrees. I give him the Tylenol and when the nurse returns I give her the vial. She looks at it and sees that it is empty.
The x-rays come back and he has some air pockets in his lungs ... and they need to take another x-ray. Jonathan will need to lie on his side and he is in terrible pain as they move him about. They are concern because Jonathan is not breathing deeply and are worried that there could be fluid in his lungs or some other problem. My next strategy for the next hour or so was to beg Jonathan to try and sit up. I have no idea when - but during the course of the night - with the bed already in a semi-upright position - he leans forward and that becomes the first time he moves.
Around 1 am - I'm very close to losing it (not insane) but I'm very, very worried. My new strategy was to convince him to get off the bed. Although this was unlikely - I wanted to get him more active so he could take deeper breaths and start using his lungs much more. Amazingly he agreed for me to pick him up if I could take him to see the toy room. I lifted up my son and he started to cough. He had a couple of deep, long coughs and this was a good thing because it means he was having a good exchange of air in his lungs.
I'm holding Jonathan by the bedside since his IV and monitoring system is not mobile and I wait for the nurse to change his bed sheets. At that point in time I remember thinking to myself - wow - three things getting accomplished - his moving, his exchange of air, and the bed sheets being changed. The nurse finished changing his bed and puts his IV on a mobile pole and we walk with Jonathan in my arms to the toy room. We put him in a wheel chair and I ask him what toy he wants. Jonathan says, "Daddy, you choose one". I take out a puzzle and he says, "not that one". I eventually find one that he wants.
While I am building the toy for Jonathan - it's one of those connectix type toys - the pediatric doctor on call comes in to talk to me. Jonathan's hemoglobin count or level is borderline and they recommend that he gets some blood to help with his intact of oxygen. I have plenty of questions but no idea what is the right decision. I give them the go ahead and Jonathan and I went back to his room. He falls asleep around 2:30 am and I do the same shortly after. Around 4:30 am I wake up and realize that his blood transfusion has already started. I'm so tired ... it's unbelievable.
Switching back to the present - he is doing better now. His pain is under control - except for some tumor pain around his stomach - he had some of his energy drink - and he is somewhat mobile. I've decided I'm going to wait until I've seen at least 24 hours of progress before I start to relax. It's going to be a long week.
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