Time for AWARENESS!!!

AFROTC Det 860 at Utah State is doing a run for Mason on March 19. I am still in shock on how nice people are and how they really want to help! Our little Mason has been a lesson in pride for us. We have had to learn to swallow our pride and let people help. We are so greatful for them in doing this for our family! And so greatful to everyone else who has helped us. The thing I am most excited about this run is AWARENESS!!! I am hoping that somebody somewhere will be helped my Mason's story and cause. So everyone put your walking/running shoes on and come support a great cause! To register go to http://braveheart.regtix.com/

Picture OVERLOAD!

Well the past three weeks have been quite the whirl wind! You got all the updates and I hope you are prepared for all the pictures that went with them..... So here they are a portion of the pictures.....


Mason


Mason and Mommy right before the Glenn


Not much do do waiting in the waiting room for 7 1/2 hours except this :)



Just after surgery



Tube Free



Poseter from Kids Crew


Sleepy boy


The First Wagon Ride




Going Home from the Glenn Procedure


Sick boy....Back again


Mason and Mommy


Mason and Daddy


Waiting to go back into surgery


A few days after being reopened


Our Sweet boy


Big Stretches!





BIG boy!


Home AGAIN! :)

Tonight!

Tonight at this point we will be going home!!! WAHOO!! Everything is looking great. Mason's labs have come down, his incision looks good, and he is happy! The only thing we are waiting on is in this mornings xray it showed that the PICC line is still in too far so we are waiting for IV team to come and pull it back a little farther then stitch it back into place. Last time they did it he screamed because they have to put him on his belly (his PICC line is behind his knee cap) holding that leg up so it had TONS of pressure on his sternum which was just opened up and then when they stitched it into place they didn't give him anything so needless to say there was ALOT of screaming from him. The Nurse Practitioner didn't want that to happen again so she ordered numbing cream and morphine for it. They put the numbing cream on about an hour ago. They said it takes one hour for it to take full affect and it will stay numb for 4 hours so anytime now they will be coming to do that. Then after that we just have to do a little more education with the PICC line and they have to set up home health for us to get the antibiotics and we will be able to go home! Mason is still proving to be such a little fighter, we are so lucky to have him in our family.

Today is Wednesday

Well today is Wednesday, they day I was having wishful thinking that we would get to take Mason back home, but that isn't the plan yet. Mason is doing really good the team said this morning from a cardiology standpoint he is exactly where they want him as far as progress goes. The reason we are still here is he is still on IV Lasix so he has to be able to be on oral Lasix. Also this morning on his daily xray it showed his PICC line is in to far, so they have to sedate him again and pull it back and restich it. Also the level of antibiotics isn't as high in his system as they want it so they have had to go up on the dose and wait until tomorrow to draw another level from his blood to make sure it is where they want it. So the earliest we will get to go home is Friday.

PICC Line

Today Mason got his PICC line put it. It will be so nice to have because he has already had 6 IV's in less than a week because they keep going bad, plus he gets lab draws every morning so with this it means NO MORE POKES!! YAY! His labs are still elevated and his lungs are still wet so we might end up being here longer than Wednesday. He is still on IV diuretics and will be until his lungs start to clear then he has to be able to keep them clear with oral Lasix. They think he is so funny because he is so feisty! He always lets them know how he is feeling weather happy or mad! Other than that we are still just hanging out doing the same old stuff! I'll update again when we know more but for now I hope you all have a Happy Valentines day!

Surgery Update

Mason's surgery went pretty good last night. It took about 2 hours, they had t0 completely re-open his chest and cleaned him out with 2 liters of antibiotic then vacuumed it all out. Dr. Burch felt good about how it went and that they got all the infection out. The Dr said they only get about 4-5 sternal infections a year so Lucky Mason! Although I'm grateful it wasn't some other things these Hypoplast Left heart babies could go through. They were pretty worried he would be sepsis but so far so good on that. He stayed the night in the CICU but is now back on surgical. He has a high fever still so they are watching that. We will hopefully come home Wednesday or Thursday. He will come home with a Picc (sp?) Line for 6 weeks of antibiotics so I will get to learn another new thing!

Back to Surgery

Well Mason is going back into surgery late this afternoon. This morning on rounds Dr.Burch (the surgeon) decided Mason's incision looked a little more red and puffy so he dedided to lance a little of it open and when he did it was full of puss, so needless to say he is full of infection! I'm relieved to know that they found the source but pretty nervous for him to have to be opened back up and cleaned out. His hematicrit is also low so he was recieve another blood transfussion. He has been going along perfectly after surgerys so I guess a little hiccup is expected now and again. He is still such a fighter though, he still finds the strength to smile for a min and show his sweet personality!

Home and Back again!

Quick update:
Mason got to go home on Sunday... YAY!!! But he just got admitted again last night (Wednesday). We took him to the pediatricians office on Wednesday because he was really fussy and had a temp of 102. There was no obvious reason for it so they drew his blood and his white count had gone from 8,00 to 20,000 and his CRP was really high (they didn't tell me the value) So we came as a direct admit to PCMC. This morning his CRP had doubled from yesterday and he has been on antibiotics since 10:30 last night. All the viral tests have come back negative and he had a echo and his heart looks great! So now it is just trying to figure out what is causing all of this. If it's something minor we could hopefully go home as early as sunday but we also have the potential of being here for at least a month. We are hoping for the Sunday date! :) Zac has to leave so I will try to get an update in tomorrow when Mason is sleeping in the Parent Resource Center. Thanks for all the thoughts and prayers! And HAPPY CONGENITAL HEART DEFECT WEEK!!! :)

Mason's First Wagon Ride

Well we are all going a little stir crazy I think including Mason. He is either in his crib or I am holding him in the rocking chair right next to his crib so not much to look at! He hasn't been sleeping at all but is so tired so I asked his nurse if we could unhook him and go to the window right outside his door and she said they could hook him up to a portable monitor and they could get a wagon and we could go on a walk! So we did, it was so nice! Mason loved it and it actually put him to sleep and he slept for a whole hour! He is still throwing up but not as bad so the plan is for us to go home TOMORROW!!! :) :) He has lost weight and doesn't quite weigh 10 lbs anymore. He weighs 9.8lbs. The nurses and techs just love Mason and love to come in a talk to him, (when he is not grumpy that is!) There isn't much more to update today just hanging out! Here are some pictures off of my cell phone of Mason's First Wagon Ride!

Another Day

Well just another day on the Surgical Unit. I wish I could say it has been uneventful but I would be lying a little bit. Mason knows what he wants and thats what he is going to get! I love that he has a strong personality already but not so much when the only person he will eat for is me. They tried so hard to let me get some sleep last night but he did not want anything to do with them, and as soon as I would hold him he'd stop and eat, Already a Mamas boy! :) He was really fussy all night only sleeping 30 min to and hour at a time so it was kinda a sleepless night and then today he is throwing up a lot. They are not sure why yet but he seems kinda miserable. But it is just a very minor issue at this point. If everything keeps going as planned we are looking a getting discharged Sunday or Monday! So cross your fingers! They still call Mason an "All Star" That's how they referred to him last time and he is still the little All Star! I can't wait to get home on my Computer and upload all the pictures, you guys better be ready for a picture overload!


(I was able to take this pic with my phone in a happy moment of the day!)

One Step Closer!

This afternoon Mason was moved from the CICU to the Surgical Unit, one step closer to going home!!! This morning he had a echo and that was the final step before moving him up here. The echo showed that his heart isn't pumping as strong as his pre-op echo but it isn't at an alarming level either, so he will have another echo in clinic after he is discharged. A reason for that is he has had high blood pressure post-op and they said they think that could have caused it so they bumped up his blood pressure medicine and are hoping that will do the trick to get it back where it was before. When we came in he was on 3/4 of a liter of oxygen and now he is only at 1/2! They wont try to ween him for awhile because the oxygen is good for them so it will probably be a month or so until they have us start to ween him off. He is starting to wake up a little more, he still is kinda out of it and hasn't smiled yet but every time he wakes up I see a little more of his personality starting to come back. Now that he is here we are no longer staying at the Ronald McDonald because we can sleep right in his room. His nurse tonight is so dang nice her name is Kellee and she can tell how exhausted I am so she told me when I go to bed to sleep and when Mason wakes up to eat keep sleeping and she will come in and feed him! I took her up on that offer and I actually just got Mason back to sleep so I am going to go ahead and do the same! Zac went back to Logan to go to school tomorrow but he left me his computer so I'll update again tomorrow!

Today

Sorry I didn't update yesterday. Mason got taken off the ventilator late Monday night and has done great without it. They still have him pretty sedated so all he does is sleep. He hasn't woke up yet, he opened his eyes once for a few seconds is all but his vitals are good and they figured out his meds. They decided he has a really hard time coming off of the anesthetic from surgery because he did a similar thing as when he was out of his heart cath in the picu. He screams and screams but isn't awake and nothing calms him down so his blood pressure shoots through the roof and his oxygen levels do just the opposite. They maxed him out on off the pain meds and sedation meds that they could and he was STILL screaming so the attending suggested maybe trying ativan and totally helped him out so much! They told us he would probably go to the floor today but his blood pressure is higher than they want it again and his lungs are full of fluid so they are keeping him in the PICU and we will see what happens tomorrow. They increased his Lasix and added another diarrhetic to see if that will help with the water retention that his making him so swollen and also help with the wet lungs. He still has all his chest tubes and we still haven't held him yet but we sing to him and hold his hand. We seriously love all of the employees in the PICU they are so amazing and so good to Mason and us. So he is still doing good just still on the recovery road. So we are really excited for tonight though at the Ronald McDonald house they have a bulletin board of events and what not and there is a flyer saying somebody donated tickets to one of the suites at Energy Solutions for the Jazz game tonight so we are going to the Jazz game in a suit! We are so EXCITED! Zac has never been to one so what better way to go to your first Jazz game than in a suite! People are so generous and it seriously makes you want to help out also. Someday I am hoping we will be able to give back to these places that have helped our family out so much! I wont update again tonight but Ill try really hard to update again tomorrow.

Quote from a friend

I have so many people tell me how strong we are and they'd never be able to do it. Well my good friend Kaydi sent me this and to me it's very true. Thank you Kaydi you know what it feels like to stay strong also!
"You never know how strong you are until being strong is the only choice you have"