Friday, May 18, 2012

Home for Mother's Day!

Just a quick post to let you know we did make it home in time to spend Mother's Day together as a family! Hooray! Mason enjoyed playing on his play set with a few of his cousins on Mother's Day. (Thank goodness for pain meds...because his back is still very tender!)

(Sunday was quite a windy day......can you
tell from Mason's nice hair do?)

So far nothing has grown from the cultures taken when Mason's incision was reopened last week! I'm glad, because if something had grown then he would need IV antibiotics for at least 6 weeks! But weird, because we'd hoped that was the cause for the fevers and high infection markers in his blood work the last few weeks. Hopefully the fevers will just stay away and we just won't have to worry about it any more!

So far since Sunday, Mason has been fever free! Ya! Although, his back still seems to be tender and causing him pain. Poor little guy! And Wednesday we spent 6 hours up at Primary's because his incision was starting to look infected again, but his blood work showed no signs of infection......thank goodness! So the Orthopedic resident cleaned it up and re-steristripped it (Dr. Smith and his partners were all out of town at a conference) and we will take him back in to see Dr. Smith next week.

Thank you for you continued love, concern, and prayers. Soon I need to do a post with lots of pictures from the last 2 months. Springtime is just a very busy time at our house with baseball, lacrosse, and dance!!!

Friday, May 11, 2012

Return to the OR

Yesterday afternoon Mason went back to the OR to have his incision re-opened to look for any signs of infection (because of his fevers, continuing lower back pain, and consistent drainage from the lower incision).

Luckily Dr.Smith only had to open his lower incision. If he had found a lot of infection then he would have also needed to open the upper incision to clean out that area as well. (When the rods were placed last month there were two incisions made about 3 inches long each, one at the top of his back and one at the very bottom.)

There was a small amount of creamy colored fluid found near the right rod. They cleaned it and sent it for cultures. The whole procedure from being put to sleep to waking up only took about 45 minutes and everything went smoothly.

Mason had a very restless night and has a tender sore back today. He is such a good sport and such a brave little boy though!! Hopefully he will recover quickly, we will get some answers, and go home soon! Thanks for your continued prayers.

Tuesday, May 8, 2012


It is said that the "third time is a charm" and today I certainly hope this is true! Yesterday, Mason was admitted to the hospital for the THIRD time in a month! That is a new record for Mason and his incredible journey. It's almost like a game of ping pong between Primary's and home right now, but a real game of ping pong would be much more fun! 

Why was Mason admitted again? Fevers!! Saturday night he had a fever of 101.5, Sunday day no fevers, but then Sunday night about midnight he spiked a fever of 102.5. With that fever on Sunday night into Monday morning the pain in his back seemed to increase horribly. Monday Morning he also was not able to come off of his night time oxygen (he's been on night time O2's for sleep apnea since November). He just needed 1/4 a liter of O2 to keep his sats up above 92, but still another sign that his body is not feeling well. 

After talking with the Transplant team on Sunday about the fever they told me to bring him in Monday morning to clinic. They said to have a low tolerance for fevers right now. So we were there by 9am. Mason's blood work showed an elevated white blood cell count and CRP level, which are both signs of infection in the body. This in and of itself was enough reason to admit Mason. He was feeling so crummy that I agreed this was the right thing to do. 

The good news is that yesterday's chest x-ray looked pretty good (meaning these are not pneumonia fevers) and his echo also looked great (so fevers would not be due to rejection). The question is there really an infection in his back around the rods? Or did 

Mason coincidentally pickup a new bug that caused the new fevers? 

Today Mason's fevers are gone, without the use of antibiotics (no antibiotics were started in case the Orthopedic team decides they need to reopen to culture and clean out any infection around his rods because this could mask the infection) and he seems to feel much we all don't know what to think at this point! Except we all know Mason likes to throw curve balls. And Mason's blood work today shows elevated infection markers still.

Orthopedics is still not thinking there is an infection from the surgery because his incision doesn't look very bad, but we did go home to "watch and wait" for more fevers or any other signs of infection just as they said the plan was last week. Fevers came back, so here we are again! The general pediatric team, transplant team, and the infection disease team also continue to remind Ortho that being immune suppressed Mason's incision may not ever look too bad even if there is an infection going on inside. We are waiting on blood culture results still, but other than that Mason shows NO signs of the infection being anywhere else.

After talking with Mason's Ortho surgeon tonight the new plan is to take Mason into the OR on Thursday to open up his incision and look for infection. If tomorrow's blood work shows a drastic drop in his infection markers then we will re-evaluate if we want to do  something that invasive and aggressive about this possible infection.

For now, I need PATIENCE as we wait and decide if  this is what needs to be done. Mason needs COMFORT as each day's blood draw time comes and the trauma of trying to find an un-bruised vein to use. (Poor little guy has horrible vein access.) My family needs to know how very much I LOVE them as we are once again apart. 

"The lessons we learn from patience will cultivate our character, lift our lives, and heighten our happiness." ~Dieter F Uchtdorf

Thursday, May 3, 2012

Home Again....Watching and Waiting

Yeah! We are home again!

There was never any final decision on if the fevers last Saturday were due to a lung infection or an infection on the incision (and possibly deeper around the rods) from Mason's spine surgery.

Mason's chest x-ray didn't look that bad. Well, his never looks normal anyways. The left lower lobe is always hazy from his pulmonary vein stenosis. But, on exam you can hear a little bit of crackles on that side right now. So he came home on an oral antibiotic more specific for lung infections (like pneumonia), in case that was the cause of the fevers.

As for the incision (and possibly internal) infection we are still unclear if there was/is an infection there. The main problem is that when the orthopedic resident came to check out his incision (while we were in the emergency room Saturday night) he cleaned up all the pus and put a new dressing on it. THEN the emergency room attending doc came in with her nurse to take a sample of the pus to send to the lab for cultures. Thus the sample sent to check for infection was not a good sample! The results were not positive for any infection, but possibly not accurate!

Saturday night Mason was put on 2 IV antibiotics and an IV anti-fungal to cover both lung and skin bacteria infections. Within 24 hours the incision started to look much better. When Orthopedics came to see it on Monday they said it would have looked much worse if there was actually an infection. But, Infectious Disease docs and the Transplant team did not completely agree.  Since Mason is on immuno-suppressants (his anti-rejection meds) his immune system may not respond the same as a normally healthy person. Even if there is an infection on his incision and deeper, his skin will not get super red and swollen like it would if his immune system wasn't suppressed. That being said, there was quite a disagreement between the docs! 

Monday night the general consensus was to take Mason off of the 2 IV antibiotics and the anti-fungal to see if the incision infection will re-manifest itself. So, WATCH and WAIT!! After no fevers and the incision still looking better by Tuesday night I told all the doctors that we can WATCH and WAIT at home. They really didn't expect anything to happen in 24 hours anyways after 48 hours of being on very strong IV antibiotics anyways. It could take 96 hours or more!

They agreed I can do the watching and waiting at home. Tuesday night we came home again! Hooray! Although, since they sent Mason home on antibiotics for the possible pneumonia this could keep the possible incision/spine infection at bay for at least the 10 days he's taking it. Just kind of complicated! But at least we are home! And so far, no more fevers!

The good news out of this hospital stay was that Mason came home OFF of OXYGEN! The Transplant team decided Mason needed to get another blood transfusion because his red blood cell count had remained too low since surgery. Even after he received a blood transfusion the night after surgery his count dropped again just a few days later. Therefore with a much higher red blood cell count his body's oxygen saturations are back up to normal. Hooray!

Thank you for your continued prayers and love for our little Miracle Mason.