I am back here now. If for some reason you don't follow me on Facebook, I have been updating more over there. I haven't updated anyone but close family on the last week. No it isn't because something bad has happened. It has just been fairly boring. With that indicator enjoy my writing about the last week of boredom.
Now to decide how far back to take you too. Maybe lets start with how James is currently doing and then get into the nitty gritty. James is doing very well. He is off the IVs now and on oral anti fungal and antibiotics, and man do I have a story about this shenanigans for my rant later. He is getting paler by the day, yes this is a good thing in his case. He is looking less Simpson character (Thanks for that comparison Jessica) and more middle of winter Canadian pale. Almost the same level of pale as me! He is moving about with way less pain and is walking to most of his appointments now. Stronger and more energy than he had pre transplant. The doctors are very happy with his progress and have even started talking about getting him hooked up with the Calgary clinic hopefully by the end of April. Now that depends on the Infectious disease team and the surgeons, all of which we meet next week. James is officially 4 weeks post transplant! The hotel is great but I really look forward to sleeping in my own bed.
James pre transplant, at Halloween. Though he actually wasn't super jaundiced here. It got worse the closer we got to Feb.
Just a couple days post transplant.
Face and hands slowly losing some of the jaundice.
Here he is with only a little jaundice on his adbomen and slightly in the whites of his eyes! His liver enzymes continue to drop and move towards normal. His hemoglobin is even rising, which considering the number of blood transfusions he needed before the transplant is amazing. The immunosuppressants can also cause low hemoglobin, so it is awesome that even though it is low it is climbing towards normal.
Here is my small little rant. Feel free to skip this part and move on. Before anyone says we should talk to the doctors, don't worry we did more than once. I am still very annoyed. Let's hop on in. The drugs. Now as mentioned above James was taken off his IV treatments for the infection(fungal and bacterial) in the fluid collections in his abdomen post surgery. Now for the fustrating part cause you are probably all like ok why are you upset. The Sunday after his endoscopic drainage procedure, one of the infectious disease doctors came and said they were going to start him on an antibiotic and anti-fungal. This was all going to be oral medicine, as since he was otherwise doing really well they didn't want that to hold him in the hospital. 24 hours later the nurse came in and was like they changed your meds and started hooking him up to those. To say James and I were surprised since we had talked to his other teams earlier that day and they hadn't informed him a change was being made and the ID doctors didn't come to see him. (James likes to know why and how long drugs are going to be hung.) Now we had already told all the doctors that we wanted to be informed before they physically changed anything so James could feel like he had some say in what was happening to him or to ask questions that he had. So the ID doctor who changed the meds(not the same that came on the weekend) stopped by and talked to us and she must have been talked too, as she apologised first thing for not coming and talking to him first. Now to add more to the simmering anger. Last week when James was released he continued the IVs as an outpatient. All good, except it turns out that the Wednesday before he was released the tests for drug resistance they do for the fungus and bacteria came back. The DAY before he was released. The doctor didn't see it until yesterday, 7 DAYS after. And want to take a guess what drug the fungus is resistant too. Yep, you're right the FREAKING drug he has been on for nearly 10 days by IV. Also turns out the IV antibiotic they had him on also comes in pill form. So he has been on pointless IVs for 7 days..... and the drug they took him off of after one day, yeah that is the drug he actually needed to be on. He needed a slightly higher dose but it was the only drug that works. And he needed to start it right away for obvious reasons. GRRRR! Still waiting on hearing when he will have his repeat CT and hoping that the infection hasn't come back.
On the plus side the kids are coming up for Easter weekend with my Mom, and thanks to him being off the IVs, we can now do more things with them. We are very excited! I get to go shopping for them tomorrow and will be dragging James as he has no appointments or physio due to the holiday! I say dragging but he is excited about it! You all can look forward to kid pictures next blog! Hopefully next week we will have a better timeline for coming home. They require you to stay until a week away from the appointment that you have with your home clinic(Calgary for us). It will still be weekly appointments in the city and physio appointments and blood work, plus no driving. At least we will be home!
Completely off topic now, but we found a painting for our room finally! It was a fundraiser for the stollery! We just got the call that our bid was the highest! Kinda sad as we didn't put much over the starting bid, but we finally have a painting we both love!
Anyways, you all have a very good Easter weekend and I will talk to you all again soon. Thanks for allowing me to vent!
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