Well our week started out ok lol Grayson was getting a little sick I could tell so I called the doctors monday and they didn't seem terribly concerned we were just going to watch him and see how he trended. If you don't know about gvh of the gut it can be very painful lots of puking and diarrhea. As of monday he didn't have pain but did puke once and was having looser poop lol sorry I'm aure u wanted to know that. Lol and we was going about 4-5 times a day.
Tuesday
his pooped seemed a little looser but was about the same amount of times. I also noticed he was not peeing very much so I called the docs again just to see what they though again :) they didn't seem totally concerned but want to watch it and would check everything out wed at clinic.
Wednesday
there wasnt much change first thing in the morning miss ellie lost her fiest tooth! Ill post pic later! And it was brynlee s last day of preschool before graduation and Graysons 100 DAY Consult with the doctors! Busy day ! Luckily we have an amaz neighbor kristy who has two kids ellie and brynlees same ages and they go to the same school ( Presley and crew:)) and they are the girls best friends. So she took brynlee for the day for us! (Thank you!!)
At clinic Graysons labs looked pretty good except him white count was 21000! Ya just a little high. They were thinking maybe an indicator that he had an infection and did a bunch of work up to see! Everything came back ok. ; ( so they uped his cyclosporine and steroids so see if it was some gvh flairing up and needed some more time on a higher dose steroid.
Thursday
Brynlee graduated from preschool! Cant believe my baby is so old and starts kindergarden next year :( love you brynlee! At her graduation however grayson puked so mason and i took grayson to get cleaned up and re dose his meds. Also over night Grayson was pooping quite a bit. And I had not heard about his cyclosporine level so I called again. Brenda said his level was 78 quite low so we were going to do a pretty big increase. A therapeutic level is between 250-350. So I felt that ment it was not being absorbed like it should since he hadn't puked any up :( well my gut was right. Grayson sleep most of the day and o went to change his bum about 1 his poop was very watery a very good sign that gvh was not making it happy. Still no signs of pain or puking this entire time! (That's a good thing lol) so I called Brenda and let her know how different it looked and she tjought it would be best to come in ao they could watch him and be able to keep a better eye on things.
Friday
This morning after rounds they decided with his output and weight loss that we really needed to get ontop od things and turn all meds iv and put him npo let me tell you How bad he hates that :( (npo nothing by mouth) his tummy really needed the rest. And with the tummy rest and us knowing he's getting his meds we should start seeing some change!! He also has some skin gvh so his skin is very dry and itchy so he is pretty mad between no food and itching and just not feeling good! :( but cross ur fingers, wish on a star, say a little prayer or just send US good vibes this is a fast recovery and he can be home for his birthday next Saturday!! Can not believe he's 1! Well almost lol
We love u all and I will try to update tomorrow! Ill post a few pics of this last week :)
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