Monday, August 16, 2010

Are you kidding me???

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,


Emily@Little Forever Family said...

I am not sure if you were there when the Anderson family was there (their little girl was across from Ryker for awhile and she was about 2-3 weeks younger than Ryker. She just had her transplant a couple of weeks ago, and her little Mariska is still there with the same problem. Her Mom's name is Melynda. Odd that they have the same thing going on right now.

The Simmons Family said...

I am SO sorry. :( Poor little guy back at his home away from home. I know Misky Anderson is there with the same exact issue. She's been blogging about it. They're on day 14 NPO. I'm going to be praying this goes away quickly so you can get home to your other little ones.

Once again. You will get through this on Faith.

My heart goes out to you.


Jennifer said...

:{ so sorry.
....funny story. You and Mason were in my dream last night. I think we were camping. (there was lots of dirt)anyhow ...someday your whole family will do that and THIS day will seem like SO long ago.

Anonymous said...

Still following your journey, praying for you and feeling the weight of being torn between the desire/need to be with all of your equally precious children.

Praying for speedy recovery for Mason and ample doses of peace for all of you.

Rolf and Trish

The mom of 4 monkeys! said...

Thank God they cought the problem! I will pray it gets better very soon and you "only" have to be at the hotel for a week!

The Timothys said...

oh man! i'm so sorry to hear that he is sick again! :( poor little fella! let me know if you need anything at all! even if you need a nice cold, refreshing slurpee! i'm only half hour away! :) we will keep mason and your family in our prayers!

Kyle and Alli said...

Oh boy. Yet another speedbump. I hope that this resolves very quickly so that Mason can get back to normal soon!! Look at you though...replacing the G tube button without a problem. You have officially been living in the hospital too long!!!

Moffitt Fam said...

Oh man!! Tyler was hospitalized last year for the same thing. We were there for 2 weeks! They did the same exact treatment plan, no feeds for 5 days and heavy duty antibiotics. We will be keeping mason in our prayers, like always!!

Nikki said...

What a bummer that you hit this little roadblock! It is really a blessing, though. I'd rather spend a week or two there while the dr fixed the problem, then have to go back for months while he recovered. I hope everything works out and you guys are home super soon!! <3

Michelle said...

Dang it! Summer, I'm so sorry! We are here if you need anything. Madison has an appointment on Thursday, would you like me to stop by your house and grab you anything? e-mail me.. I'd be happy to help in any way.
Hang in there. Just know that Mason has a ton of fans praying for him. You guys will be fine. Thank you for being such a great example to me.

Pianomusic821 - Kandice said...

Summer your life sounds much like mine right now. I am going through some health issues right now to and it seems to be one after another happening. First my grandma got sick and passed away in July then I got sick and have had to have a scope and can't eat much but soup and baby food and I have to have my second scope on Thursday to hopefully figure out this issue with my esophagus. It is no fun being in and out of hospitals. I was at primary childrens when I was little for Many shunt surgeries. So I know what you guys are going through. I hope mason gets feeling better!

Mindi D said...

NOO! I'm so sorry. That picture of him makes me cry! He is so cute, poor guy. I can't imagine what goes through his little head everytime you walk in that place. I'm glad they found it now rather than later but BUMMER! Your other kids will be fine, but poor mom :( I'm sure it's hard. You are supermom for sure! Hang in there.

madelyn said...

I feel so bad for you guys! Having been through the 'in again, out again' of hospital stays I know how frustrating it can be. Try to find a positive each day, even in the smallest of things, and we'll keep praying that you all get home soon. Your faith is amazing and will see you through this latest trial!