Tuesday, February 7, 2012

The Continued RBC Issue, a New Virus, a Night at The Hotel on the Hill,........and Family Pictures

I said I wouldn't wait too long in between posts, because it is too hard to catch up on everything that has happened.....but I still did it! Anyways, I will briefly try to catch you up on the last couple of weeks. 

Mason had his appointment with Dr Afify the Hemoc doctor on January 24th. She is a Hematology and Oncology doctor so our appointment was in the Oncology clinic at Primary's. (I'll be honest, I prayed the whole time we were in there....... that we won't have to worry about joining the Oncology world. Isn't being a "heart mom" enough? Being a heart kiddo has brought Mason plenty of medical issues.......don't you think!!!) Dr. Afify looked at all of his blood work since we saw her four weeks previous in the hospital and decided doing some IVIg treatments on Mason would help possibly get rid of the Parvovirus which seemed to be still slowly killing off his RBC's (red blood cells). We scheduled it for the next Monday, January 30th.....but if his blood draw Thursday at Cardiology clinic showed he was starting to maintain his RBC's we could hold off on the IVIg treatment.

That Thursday, January 26th, at Cardiology Transplant clinic everything went well. Mason's ECHO was beautiful and he also enjoyed seeing is friends at clinic. The blood draw showed his RBC's actually maintained for two weeks without dropping. Mason's hematocrit remained at 26. Over 30 would be better, but 26 would be okay if he could at least maintain it. So, we were able to cancel his IVIg appointment, and just scheduled a checkup with Dr. Afify on Feb. 13th. Woohoo! They did also check for the Parvovirus in that blood draw and he still showed positive for it, but that was somewhat expected. It can linger for a long time. What does this mean? Just wait and watch his RBC's to see if the Parvo is still attacking them.....

The next Thursday's (Feb 2) blood draw didn't have as good results. Bummer! His hematocrit dropped to 22. And I wasn't surprised, because he'd been rather sleepy and just not his peppy self all week. Dr Afify said she was okay to still wait to see us on Feb13th and possibly do an IVIg treatment then. Still watching and waiting......

But, then over the weekend Mason got really sick with a high fever and a nasty cough. Being that Mason doesn't have much of a reserve with such low RBC's , the transplant team wanted to see him first thing Monday morning (yesterday). After blood work showing his hematocrit at 18 they decided to admit him for a blood transfusion and  an IVIg treatment. 

And his cough and fevers??? He has another virus.... Human Metapneumovirus (hMPV). This came up positive on a viral panel taken. What is hMPV? It is like RSV on steroids! (That's what a few of the doctors here have referred to it as). Will this keep us here in the hospital? It could but hopefully not! We have Oxygen at home if needed and with more red blood cells his O2 sats are already better. 

So we did spend the night at the HOTEL ON THE HILL, but hopefully we will head home this evening. I have a birthday to get ready for.....Braiden turns 9 tomorrow.

(What is IVIg? Intravenous Immuno Globulin Therapy is a treatment used for immune system problems.  Donors (over 100 per treatment) give blood and the antibodies from blood is spun out from the plasma. These antibodies are pooled together and intravenously given to a patient. This infusion treatment can be given to wipe out bad viruses as well as bad antibodies fighting against transplanted organs. That is why Mason also received IVIg before and after transplant for several months.)

Praying for lots of RBC's and the ability to fight of Mason's newest yucky virus! 

Here are some more of our family pictures,
(You saw our Christmas card photo already).
They were taken by a very special friend and
"heart mommy", mom of Angel Logan,
go here to see Shanna's blog.

 Kaitiln- 7th grade 

 Preston- 5th grade

 Braiden- 3rd grade

 Ammon- 1st grade

 and of course...... Miracle Mason

 A few random pictures..... 
At Grandma's house

 Santa Jr.

 Our very own 'neighbordhood watch' squad

Cold temps don't stop our patrol squad!

Mason helping make school lunches

Happy February! Happy Congenital Heart Disease Month! Help spread awareness!

Until next time.....