What a really nice weekend! Last week Gabby and I decided that I would spend Friday night with Jonathan at the hospital - because she wanted to spend some time with her mom - who is flying back to Trinidad at the end of this week. With Jonathan being in the hospital for so long - and my not able to contribute to spending time with him - Gabby didn't really get much of a chance to spend time with her mom.
It was during the week that I also got a brilliant idea - why not take my computer (desktop) to the hospital - so that way I can spend the entire weekend and at the same time get some personal stuff done! So - that's what we did. The original plan was for me to drop off the computer (and associated equipment) to the hospital on Friday morning and then head up into the office. In the afternoon - I would come to the hospital and relieve Gabby - who would then spend the weekend at home and relieve me on Sunday night for me to go home. Well - it mostly turned out that way except that I ended up taking Friday off.
I'll get back to the working thing in a moment - but my stay at the hospital was such a joy. During my stay at Friday night - since I had the computer - the kids were on it playing games. First when Arielle was there, and then afterwards Jonathan got a turn. I think Jonathan was upset that Arielle was playing - because he wanted to play too - especially since it was the new Dora the Explorer game - but as upset as he was - he was still watching Arielle play : ). The night was fairly enjoyable until it was time to go to bed. Apparently Jonathan didn't want me to spend the night - but wanted Gabby to spend the night instead. I was told that I can 'visit' but I cannot spend the night! I know, I know, I deserved it. For the last two months I have been away from the hospital and not spending time with Jonathan so I understood where he was coming from. Incidentally, it was hearing his comments that have spurned me on to make some decisions about work - but I'll get back to that in a moment.
On Saturday morning - Jonathan was up early ~ 7 am. I'm not sure if he woke up on his own or if the nursing staff woke him up - but since he was up - the nursing assistant decided to get Jonathan's stats - his blood pressure, temperature, measuring his stomach, weight, etc. I eventually went over by Jonathan's bed because he didn't look happy and was sitting up all the time - and I found out that he was still upset that Gabby didn't spend the night : (. So I lay down next to him and he eventually lay down as well and we both fell asleep until around 11 am. I think that it was after our morning nap when things got better and I didn't hear any more comments about wanting mommy to spend the night : ).
The remainder of the weekend was a blast - we had lots of fun - played games - including non-computer related games : ). Jonathan is very good at making up his own games : ) especially with that great imagination of his. I also learnt how to operate his pump to feed him. So - another milestone we reached is that Jonathan doesn't have to get nutrition via his line (that runs to his veins) also called TPN but instead he can get nutrition via his NG tube that goes into his stomach. We were really hoping that he would have been off the TPN for two reasons - it's more strain on his liver and his lines and ultimately his body is open to more infections.
With his feeding via his NG tube - he is getting Pedisure and he has to get the equivalent of 150 percent of his normal body needs - simply because his body has a massive amount of healing to do. So - how it works is that he gets three major feedings during the day - to represent breakfast, lunch and dinner, and he gets a continuous feed during the night when he is sleeping. I'm thinking of asking whether I can also get a juicer and give him things like carrots and other fruits and vegetables via his NG tube - but I'll see what the medical team advises.
So - today is the day that Jonathan gets released. He will be heading over to the Ronald McDonald house. Fortunately (for us) his stay will be short because day 60 is on Sunday at which time he can go home. I've sent in a request to have him go home earlier - around Wednesday / Thursday - so I'll find out today what the doctors think. I'm also taking tomorrow off (again) but this time it's because I have a cleaning crew coming in to our apartment to give it a through cleaning. We need to make sure the place is really clean before Jonathan comes home - so besides the carpet getting a steam clean, I'll have the apartment get a good once over to remove the extra dust and such.
Hopefully by next week - we'll be together again under the same roof. After his recovery - Jonathan's next procedure is radiation therapy. They will be radiating his stomach area - the source of the primary site, and his leg - the remaining place of cancer prior to going in for his stem cell transplant. His radiation therapy is supposed to last two weeks - with Jonathan getting radiated every day for about 10 to 12 days and will be done as an outpatient. The doctors say that radiation therapy is a breeze - at least compared to his stem cell transplant - so hopefully that is true. The major side effects are nausea, soreness at the site, and lack of appetite. After radiation therapy then we'll have a another evaluation to determine whether cancer still remains. We are both looking forward for this evaluation and I hope to God that all the results come back negative. Of course, after the radiation therapy we still have lots more to do - but that's too far ahead ...
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