Home Bound

Mason is one smart sneaky boy! Somehow he was able to stop his fevers and keep enough fluids down last Sunday and Monday in the hospital in order to fool the docs into discharging us to go home. Monday night we came home to a delivery of IV meds, IV supplies, gowns, masks, and a home health care nurse. 

I learned how to take care of Mason's PICC line (central line) and administer his anti-viral IV meds. He is receiving the IV infusion twice a day and each time it takes one hour. The gowns and masks serve a dual purpose while administering this med...... 1) to keep a sterile environment because Mason's IV is a central line right into his internal jugular vein and 2) for precautions to protect the one administering it (Me) from a drug that is classified into the same class as chemotherapy drugs. Do I remember the gown every time? Let's just say, I'm lucky to even get his IV started on time!

So, I say Mason is one sneaky boy because the day after we got home from the hospital his fevers were back with a vengeance! Little stinker! Everyday this last week at home his fevers have started around 101.5 and by night time have gone up to 103.5- 103.8. The only thing different than before he was admitted is that he has been able to stay a little better hydrated. Poor little guy has continued to feel so very crummy. He has had three hang-out spots where he has spent all his time: the big red chair in the family room (which I cover with blankets because of his vomits and diarrheas right now), my bed, and his bed. He hasn't even felt like walking from one resting spot to the next, he asks to be carried. These yucky viruses along with the pneumonia have wiped Mason out! 

Everyday I have stayed in contact with the transplant team at Primary's about his fevers. They feel that the fevers are still part of the EBV and CMV....they are just 2 very horrible viruses and they may take Mason quite awhile to get over them. Since Mason started antibiotics the day the pneumonia "crackles" started in his left lung, the fevers probably are not from that still. The team has felt I'm okay to continue treating Mason at home as long as the fevers and dehydration don't get to the point they were 10 days ago when he was admitted. I love taking care of him at home, but I will admit it is tough when I have a family to take care of as well!

With this combination of illnesses Mason has caught this time, we will probably be home bound for the rest of the winter. Or maybe I should say "lock down"! Besides going to doctor's appointments Mason will pretty much be confined to our house. Catching all this at once so early in the cold and flu season makes him all the more susceptible to the other yucky illnesses spreading around this time of year. This makes me so sad because he was finally enjoying going to church (the first time ever was in July of this year), hanging out with cousins, and going to the store once in awhile with me. 

What makes me even sadder is that Mason's therapists and preschool teachers can not come see him right now either! As I said, LOCK DOWN! The EBV and CMV are highly contagious to other immune-compromised kiddos and adults, as well as to pregnant women (because CMV is dangerous to the unborn child). That being said, Mason's preschool teacher is pregnant so she definitely can't come see him. And, all the people his other teachers and therapists visit are also immune compromised, so we can't have them spreading Mason's germs! Mason LOVES his teachers and therapists (he gets speech, occupational, and physical therapy)! He asks me almost everyday, "Is my teacher coming today?" I sadly have to answer, "not today  honey". How long until they can come again?..... We aren't sure right now.

Today Mason has a transplant clinic appointment. He will get an echo to make sure his heart is handling all this right now, and lots of blood work. Thank goodness for his central line because they will be able to draw all of his blood work from that without any pokes. Most of the blood work will be to measure the level of infection in his body and to get a quantitative count on the amount of EBV and CMV he still has. If the amount of each is going down then we know the Ganciclovir IV med is working. If not, then Mason will have to switch to something else. Also, as we continue to follow the amounts of CMV and EBV in his blood over the next couple of months this will help us to know when he is not contagious anymore (and thus can receive visits from his "teachers" again! yay!).

The good news for today is..... so far no fevers! Hopefully is is on the mend!

I will try to be better about updating and I also need to still do a "Fall Family Post" very soon. Thanks for your continued prayers for Miracle Mason and all of his heart buddies.