Sunday, November 4, 2012

Number Eight & Halloween

Here we are again, at Mason's favorite hotel.....The Hotel on the Hill (Primary Children's Medical Center Hotel that is). It truly is our home away from home, especially this year it has been for sure! I just counted up how many times Mason has been admitted this year, 8 admits in 10 months! That is definitely a record breaker for us. Not the best record to break either!

Mason has pneumonia in his left lung (thank goodness this is his non-functioning lung that doesn't get any blood flow, and hopefully we started antibiotics soon enough to prevent it from spreading to his good full functioning right lung). He also has EBV ( better known as Epstein Bar or Mono) and CMV (Cytomegalovirus). THE JOY OF IMMUNO-SUPPRESSION! Not! But in all reality, this is just our lifestyle right now. I just have to count my blessings that Mason has a donor heart that has saved his life, and in order to save his donor heart he will always be immuno suppressed...........which means picking up miserable and sometimes rare sicknesses is just part of the game.

Mason started having fevers of about 101 about 10 days ago with no other real symptoms accept being more tired and a higher heart rate. By the 4th day, which was Monday Oct 29th, I took him to see the transplant team. I was worried about rejection. His echo looked normal, which usually will rule out rejection. Yay! So what was going on then? Mason had a bunch a blood work done to see if we could figure it out, because in his physical exam everything seemed normal as well. Most of his labs came back normal with some pending until Tuesday, so we headed home. 

Monday night he just didn't seem like his happy self. I knew he didn't feel well, but he still tried to enjoy the family activity of carving pumpkins:

Late that night his fever went up to 103! So, in the morning our pediatrician Dr. W checked him out. Overnight his left lung got quite junky, full of crackles! He started Mason on antibiotics to treat pneumonia. Thinking this had been the only reason for the fevers, I felt relieved to have an answer. BUT, then I got a call from the transplant team with the remaining results of Monday's blood work. Mason is positive for EBV (Mono) and CMV! These 2 viruses can make immuno-suppressed kiddos dangerously sick! I would have been perfectly fine with JUST the pneumonia diagnosis!

Mason was then started on an antiviral medication to treat the EBV and CMV. We also were told to go in Wednesday for more blood work, because they needed to run quantitative tests to find out how much of the EBV and CMV he actually has. This would tell us if he would need a stronger anti-viral med via IV rather than just the oral med. 

So here is brave Mason on Halloween morning in his cute little police costume at the Primary Children's Riverton lab. He is warming up his arms for more blood work:               

He continued to have fevers that day of 103.5. Which would only go down to 101.5 with Tylenol (he can't have Motrin).  All the other symptoms came on with a vengeance as well; a nasty cough, vomiting, diarhea, sore throat, and body aches. This was definitely not Mason's happiest Halloween! Poor little man! He tried to put a smile on that night to enjoy the night with our other kiddos.....

 but he just felt crummy! He "trick-or-treat"ed to just a few neighbor houses and then he was ready to call it a night. It made me sad, because he had been so excited for Halloween this year!

As the week went on Mason seemed to get sicker and sicker. His fevers were going up to 104.5! Yikes! We were waiting for Wednesday's blood work to come back to know if he needed to be admitted for IV meds. Thursday came and went with no results. Friday came and still no results, but by late afternoon I talked with the transplant team and told them I was quite worried about Mason. He was so lethargic and I was certain he was dehydrated. They had me bring him right into Primary's. This is how miserable he was feeling:

He was admitted and started on IV fluids right away, for dehydration. When we got there the blood work results finally showed up. The CMV was in very high amounts and the EBV was lower, but still concerning. He then was also started on a strong IV anti-viral med. He will need it twice a day for at least 2 weeks, before it is switched to an oral med. 

The good news is..... Mason had a PICC line put in today that he will be able to go home with to continue the IV meds. This line will also be used for the frequent blood draws that will be needed to monitor the CMV and EBV. Today is Mason's first day without a fever. So he seems to feel a little better. If the fevers don't come back and he is able to stay hydrated we will be able to go home soon. I just feel so bad for my sweet little boy. I hate to see him feeling so crummy! Please remember him in your prayers that he can be happy and healthy again soon.


Preston, Braiden, Kaitlin, and Mason showing off their Jack-o-lanterns.

 Ammon was Mason's police partner. They both are
so fascinated with police offers!! 

 Kaitlin a pretty purple cat, Ammon and Mason the
crime fighting police men, Braiden and Preston the
boys in black were all ready to go get some candy!

Mason even had the perfect mode of transportation!
If only he had felt better!

I will update soon to let you know how my little policeman is doing! Thanks for your love, concern and prayers!


cici said...

Awww feel better little Policeman.
~Hugged in Prayer~

Gourley said...

:( so sad he's so sick. hope he gets to go home soon!! (Glad you got to post an update ;)
Poor liitle man. but he does make a super cute police man!!

Robin said...

Poor little guy. You're in our prayers and thanks for the update.

Shannon said...

Ah, I'm so sorry, Summer. How are you guys doing now? We are here at PCMC, hence the moment I have to read your blog. :) I hope he is getting better, that sounds pretty serious. Let me know if you are still here. Funny how it is easier for us to get together up here than down in our home town!! HUgs.