After my journal entry on Saturday morning - Jonathan started to feel the effects of the chemo drugs. On Saturday afternoon he had his first episode of vomiting and unfortunately it also included throwing up his NG tube. So now we didn't have an easy way to give him his oral medications : (. I think the NG tube was the biggest loss because Jonathan gets at least four medicines twice a day. One for his blood pressure, another to (try and) protect his liver from damage from the chemo drugs, the third is an antibiotic and the fourth being a preventative medicine to reduce the amount of sores in his mouth and throat (another side effective of chemo).
On Monday - the BMT nurse practitioner and a couple other medical staff members saw (for the first time) how difficult it is to give Jonathan oral medicines. For us - this was a normal thing because from the beginning Jonathan never wanted to take oral medicines. He'll take everything else you throw at him but oral medicines was where he crossed the line. Child life and child psychology were then brought in to work with him but I'm not sure how effective that has or will be. On Tuesday they tried a couple of times to give / force the oral medicines but each time he threw up - probably because he worked himself up into a frenzy and it brought the nausea feeling back on.
On Tuesday afternoon they decided to put another NG tube - so right now he has a tube in and I'm hoping this one doesn't come out so at least we'll have easy access over the next two months or so. Originally they said that if his first NG tube came out they wouldn't put another one back in - because with his mucusitis starting, i.e. the sores in his mouth and throat, putting the tube in may cause some slight injury to his throat and with him becoming nutroplenic they don't want to cause any unnecessary injury or sores. But the decision was reversed because they saw how difficult Jonathan can be with taking oral medicine.
So far - Gabby has been the one bearing most of the burden of staying with Jonathan. I've only stayed two nights - Friday and Tuesday. Leading up to Jonathan's entry for BMT and his stay up till now - I've been in quite a 'funk'. It was really difficult to get to work on Monday and Tuesday - although my working from home on Monday wasn't too bad. I think my biggest deterrent right now is putting in the extra effort I have to do for my commute. When I get to 'work from home' or I've reached into the office and started working - it's actually quite enjoyable. It's definitely a topic I'll bring up with my boss but 'working from home' is a practice that is not encouraged so I'm not sure what decision will be made.
Another interesting thing that happened this weekend is that I got to spend time with Arielle. On Sunday we drove to Fresno to see my brother (his wife) and their new baby daughter. This was one of the few drives that Arielle stayed awake for more than 2/3 of the trip and it was interesting to hear all the 'talks' from her. We got some good laughs out of it and it is amazing how much she hears and understand about what is going on around her. With Arielle turning 3 a couple of days ago (on the 19th) I've come to a new appreciation of how much she is truly becoming a 'big girl' and is growing up. I think, maybe part of my funk, is my shifting of responsibilities to start concentrating on Arielle a bit more, especially since I want her to start back at some sort of day care / preschool while she waits for the 2006 / 2007 school year to begin and join pre-K at Saint Lawrence.
So - tomorrow is going to be the big day. Jonathan is going to get his stem cells back and hopefully all continues as planned with the stem cells taking root and starting to produce red and white blood cells and platelets.
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