Busy at the Hotel

Mason's stay here at the hotel on the hill (in Salt lake City) this time has been a busy one. Everyday his breathing seems to get a little easier, but he is still needing a 1/4 to 1/2 liter day and night. The goal is to get him back to room air, at least during the day, before we go home. Although, that is not what is keeping Mason here. We are going to finish out his antibiotic course via IV, rather than switching to oral antibiotics to be discharged sooner. There is concern that last month when Mason was sick, switching to oral antibiotics may not have completely cleared up his respiratory bugs.............and then it just got worse!

One huge bummer that was discovered on Sunday is that Mason's port has gone bad! Mason has had his port since May of 2010 and the hope was to keep it a few years. They can last up to 5 years. We use Mason's port for blood draws almost weekly (as an out patient) and then when needed he can get IV meds through it. It has been so nice and convenient. I just put numbing cream over the port area an hour before it needs to be accessed and then there isn't any trauma in the poke. Unlike, without a port, it is very difficult to find a good vein in Mason and becomes a very traumatic ordeal!

On Saturday, Mason's port wouldn't draw back blood, but it would flush just fine. The nurse putTPA (a clot-dissolving agent) into his line and let it sit an hour. This is to dissolve any little blood fibers or clots blocking his line. We've had to do this a few times before. On Saturday, after this his port drew back like a charm, just like the other times when we've done this. But, then on Sunday it wouldn't draw back again for his morning labs. This has never happened so close together before so the docs sent us to x-ray to figure out the problem.

The radiologist infused contrast dye into his port line and we then saw the true cause of why it wouldn't draw back blood. The end of Mason's line should be in his IVC (a large blood vessel that brings blood from the lower parts of your body back to your heart), but instead it had dropped down and turned into his liver. I was truly sad to see this because I have loved his port. The transplant team reassured me that he should be okay without a port because he is now at a point post transplant where he shouldn't need as many blood draws and what he will need should only take a finger poke. Thus, on Friday while Mason is still an inpatient he will go to the OR to have his port removed.

Mason has been a pretty happy boy this hospital stay except for when it's bed time (not a surprise), the IV team comes to visit to place an IV or do a blood draw, or a respiratory therapist comes to suction secretions or do CPT (chest physical therapy). But, even when they do come and he's mad about it he always says, "thank you". It is the sweetest thing! And it's sad too, because in his mind what he's really saying is, "okay you are done! So, thank you and now get out of here!!!"

Mason has earned a few balls as his prizes for being so brave for his blood draws:

Here is one of his, "thank you, but now get out of here moments":

(Mason is not liking the chest percussions the physical

therapist is doing. This is to help promote lung expansion

& loosen up the junky secretions he still needs to clear out.)

And of course Mason's favorite past time at the hospital is going out for walks in the wagon:

Getting ready to head out on a wagon ride.

Mason's been so good about wearing his

O2's and his mask out on walks.

While Mason is an inpatient for the rest of the week the transplant also thought it would be a good time to switch up some of his meds while he's being monitored and has daily blood draws. The one major change is that Mason is now taking Prograf instead of Cyclosporine as one of his major anti-rejection meds. So we may no longer need to shave down our little teddy bear's back , shoulders, forehead etc..... because it was the Cyclosporine that mostly caused that. Steroids can cause that too but he is on a very low dose now that it probably won't. Cyclosporine can also cause swollen gums and Mason's were starting get pretty swollen. This should be a good change for Mason over all.

Mason's also down to just one blood pressure med which is just once a day. Before this hospital admission he was still on 2 BP meds, 1 of which was three times a day. But, with the sedatives he was on while he was on the vent he didn't need ant BP meds. So far since then he's only needed to add one BP med back in. Hopefully it will stay this way!

We feel so grateful to be surrounded by great doctors and nurses here at Primary's! So many of which have known Mason since he was a newborn, that a hospital stay is almost like a little reunion. Although it would to be nice to have reunion else where, it is so wonderful to hear them say "Oh he looks so good. He's getting so big". For, they knew him when he was very blue, sick, and weak! Writing this also makes me miss all our friends we met at Lucille Packard last year who also took amazing care of my Miracle Mason. We love all of you (at PCMC and LPCH) for all you've done and continue to do for our special little boy.