Today Mason had transplant clinic at Primary's. We headed up there at the crack of dawn with Mason's backpack full of meds and a bottle of my 'special recipe of blended up foods' for his morning g-tube feed. We were just expecting the normal lab draw, chest x-ray, echo, doctor exam, and then head home by mid day.........but, NO!!!
Mason's labs looked great, echo looked super, and the chest x-ray showed a lot of improvement in his left lower lobe pneumonia from two weeks ago. In fact it's almost all cleared up! But, on the chest x-ray the radiologist spotted an unexpected problem. The x-ray caught the upper part of Mason's bowel as well (kind of by accident) and there lay his newest problem or better known on our blog as his newest "speed bump". Mason has a rare condition called 'pneumatosis'.
What is 'pneumatosis'? It is gas pockets or bubbles in between the walls of the bowel. Yes, very strange!!! Sometimes it can be caused by infections such as rotavirus or c-diff and sometimes there's no infection involved at all. One group of people more susceptible to this condition are immuno-suppressed persons on prolonged use of steroids. That qualifies Mason for sure!
It can be dangerous if not taken care of because eventually the gases will continue to build up until they burst a whole in the bowel lining. Which for anyone that can be bad, because of the toxins which will escape through the whole infecting the blood stream. And with someone who is immuno-suppressed like Mason it would be extremely bad. His body would see the toxins and start making antibodies like crazy to fight them, which in turn would start to also fight the other foreign thing in his body...... his new heart!!!
After the transplant team told me about his pneumatosis I asked, "would this explain the completely sleepless nights we've had all weekend and why he didn't want me to give him any g-tube feeds?" Their answer was, "most likely. This pneumatosis can cause severe tummy pain". Poor little Mason. No wonder he pulled out the g-tube extension (along with his g-tube button as well) last night when I hooked him up for a feed. Yes, I really did have to insert a new g-tube button myself last night at home. I no longer take him to the ER for that. I can do it now with my unofficial honorary nursing degree (I've done it 3 times so far)! (Don't be jealous, it's not fun!)
So what does this mean?
Here we are back at the famous "Hotel on the Hill".
Are you kidding me?
Yes, it is true, just 2 short weeks from our last stay. Mason has been admitted for at least a 7 day stay. The docs took Mason off all food and drinks by mouth or g-tube to give his belly a rest. He will be on IV nutrition only, until his x-rays show that the pneumatosis is gone. Best case scenario will be 5-7 days. He has also been started on 2 IV antibiotics, Zocen and Flagil. in case there is a bowel infection which caused this. They will send off blood cultures as well as a stool sample to the lab to check for bacterial infections.
I am very glad Mason's chest x-ray caught this today before it got worse and caused horrible problems. But, I'm sad for him to be back in the hospital because it is definitely not his favorite place. I'm also sad because it is my other 4 kiddos' last week of summer vacation and here I am at Primary's w/ Mason. I want and need to be with Mason but I want and need to be with my other 4 wonderful children too. If I could just make two of me!!!
Please pray for the best case scenario that Mason will get better quickly and we can return home to our family. Thank you for your continued love and support,