Post Transplant Days 1,2 ,3 and 4

Thursday was a day of mostly bed rest.  We did have to leave the room for a quick scan.  Mark was able to slowly start water by mouth.  We started with half fl. oz. and moved up to one full one.  This equals out to be  30cc per fl oz.  Every bit he put in was taken away from the IV fluids.  All the fluids are counted very carefully to make sure it is all coming back out!  I think by the end of the day Thursday he had around 200-300cc by mouth.  He still did not eat anything.  He was able to stand Thursday night for a total of 5 minutes.  This was exciting day for us...we went to bed with big hopes for day 2!

First Kidney Scan! (The big white glowing dot on the screen is his new kidney)

Water Time!

Friday Day 2:

Friday we spent most of the day in bed.  He seems to have more strength as the day went on!  He was able to eat and drink.  All fluids were received by mouth!  This was exciting...The doctor increased his fluid amount because he was doing so well.  We went from 1200cc to 1500.  We were so happy and we knew Mark could do it!  He ate lots of pasta and sauce and drank his water.  It was nice to see that he was eating and drinking so well.  He was also moved to the chair for a change...I think he enjoyed that.

Sleepy

Saturday Day 3:

We woke up with big plans on Saturday for Mark.  This is the day he would drink more, go for walks and start to really get better.  Well that is not how it all worked out.  Saturday had to be the hardest day yet.  He did not want to walk at all...his appetite was just okay, and his fluid intake was awful.  I should also add that he was not the most pleasant child to be around as well!  

The doctor's had said it can be a roller coaster but I thought for sure Saturday would be great.  Saturday morning we could barley get him up for a weight.  That had a little bit to do with the Ativan he is on to control seizure activity.  When the doctors rounded we discussed trying to make a plan to lower the dose and get him up and moving.  We cannot lower that dose until we get his daily seizure meds to a safe level.  The level dropped because he was pulled off of these medicines for transplant.  Finally there was a plan in place to give him a boost in his daily meds by IV.  Then we would lower the Ativan slowly over a few days or a week or so.  He seemed so tired he just couldn't do a thing.  We were also faced with the issue of his blood pressure was rising along with some other levels.  It just seemed like everything was going against us.  We were reassured by the team that the expected this to happen.  They are currently adding medication to fix these issue.  They seem to not be worried at all about anything.  They are happy with the way things are going...so I guess we have no need to worry for now!  After a long day Saturday we headed to bed on the early side...that was a good choice we had a night of little sleep.

Sleep..Sleep..sleep!

Sunday Day 4:

Today has been another day of highs and lows.  Mark woke up a bit on the irritable side :(  After a long night of getting up on and off I was feeling a bit grumpy too!  Once he was up we tried to get some breakfast into him.  He didn't want his bagel (you know he's not feeling well if that happens) he told me the oatmeal was gross..even loaded with brown sugar!  I was ready to call it a day and we were only a couple hours into it.  Lucky for Chris and I some special visitors showed up and his mood changed a bit.  When the doctors did rounds this morning things seemed good.  The surgeon said his kidney is running great and he is doing great with his urine output.  The Renal doctor said everything was good as well...The main issues for now our his high blood pressure and low calcium.  They have added meds to work on this.  They are still seeming not so concerned.  We saw the highest blood pressure yet today.  This has landed him with 2 oral doses of medication and IV medication as well.  We also had a visit from the Neurologist.  She had reported that is level was still low.  The plan for today would be to give him another extra dose by mouth and check labs again tomorrow and Tuesday.  For now there would be no weening of the Ativan.  Another issue that will start to arises in the next couple days is keeping a very close eye on is Prograf level.  Prograf is one of his life long medications.  This is an anti-rejection medication.  One of his seizure medications can cause the Prograf level to lower.  The Prograf also has a risk of inducing seizure activity.  Oh boy I'm glad we are no the professionals.  

Later this afternoon we had some more visitors.  Mark was excited to see my Aunt and Uncle...They had lots of cool stuff for him.  He even did his first walk with them!  The first lap around the hall!!  He then needed another dose of Ativan

Finish of the first lap!

Medicine time.

All and all things are going good here.  It has been nice to have Chris staying every night with me.  We have a big week ahead of us.  We will be meeting with lots of different to people to help us learn all we need to learn.  I'm more stressed out taking a new kidney home then I ever was bringing an infant home.  There is a daily teaching list that is gone over everyday.  We have to learn lots of new things.  We are just starting to make the early steps to prepare for home...but I think it will at least be a week or so before we start talking about home!