Home Was Short Lived

I'd been meaning to post all week to say we made it home. Staying on top of Mason's pain and nausea meds every 4 to 6 hours in addition to his other regular meds, trying to keep Mason comfy (he's still seemed to be in a significant amount of pain most of the week), catching up on things at home, doing homework and running kids to all their sports etc.....didn't leave me much time to post, but I should have! Because, last night Mason was readmitted to Primary's after just 4 days at home.


Friday I thought Mason was finally feeling a little more like himself. He took a short ride on his wiggle car around the house even! I was getting concerned though that he's still been needing oxygen, just a half a liter, but I didn't expect this to happen post spinal surgery. Even spreading out his OxyCodone doses further apart didn't seem to help his oxygen saturations. 

Early Saturday morning ((yesterday)Mason woke with a high fever. Bummer! A fever isn't something to ignore 17 days post a spinal surgery! After talking with Dr. W our pediatrician (Thank you for letting me bother you at home on a Saturday!!!) I took him into the Riverton Hospital for blood work and a chest x-ray. After receiving the results which showed an elevated white blood cell count and possible pneumonia in the left lung....Dr W and the transplant team decided Mason needed to be admitted at Primary's for IV antibiotics. 


Thus.....here we are again at the Hotel on the Hill! 


The only way to be admitted on a weekend is through the Emergency Department, which makes for a very long evening. We didn't get up to Mason's room until almost 2am after getting to the hospital at 7:30 pm! But, I will say the doctors in the Emergency Department that saw Mason last night were very thorough and concerned. While looking Mason over they discovered he had pus pockets in two different spots on his back incisions. This is probably more of the cause of the fevers than the possible pneumonia! 


For now Mason is being treating with 2 strong IV antibiotics and an IV anti fungal which should cover any lung and skin infections. Tomorrow Mason's orthopedic doctor will come by to look at his incision and decide if anything more aggressive needs to be done about the infection. Hopefully just a couple of days on IV antibiotics and then transferred to oral ones so we can go back home.


I'll try to update again tomorrow. 

Day 13 at the Hotel on the Hill

Yes it is true, Mason is still here recovering on day 13 post back surgery. But, this still hasn't surpassed the time we expected. Mason likes to take baby steps and even sometimes backwards steps. The good news is since my last post all of Mason's baby steps have been forward positive steps towards getting us home!


The cough assist and suctioning has really helped get most of the junky secretions moving and out before they made is lungs sick. Although, Mason has absolutely hated these treatments and begins to cry as soon as the respiratory therapists come in the room! It's so sad! I will say though, even though he gets upset about the treatments he completely cooperates. He just wants `me to hold his hand. What a trooper!


He is coughing much better on his own now, so today we are doing a trial day without any respiratory treatments. If he does well without them, then we may be looking at going home tomorrow! Shhh....I don't want to jinx myself!


Mason is still needing about a 1/2 liter of O2's. The hope was to get him back to his baseline of room air during the day before we went home, but if we have to go home on oxygen then at least we'll be home where he will heal faster anyways. And he'll be out of the hospital not picking up new germs! The docs are thinking the need of O2's is probably the combination of this nasty cold and cough that came on after being on the ventilator and him still needing to be on OxyCodone round the clock for his back pain. The OxyCodone  can be causing him to not take deep enough breaths because of feeling drowsy.


As for the back surgery.....Mason is recovering well. Still seems to be in pain, thus the need for round the clock pain meds. Twice a day with the physical therapist he has taken 40-50 steps with his walker. They are slow baby steps and he acts like it hurts, but he does it! What a champion! Hopefully at home he will be more motivated to get up and move around.


As for his healthy heart that we are so very grateful for.....everything has remained very stable though all of this. Mason had an echo on Friday and the results were great. His heart function is beautiful and very healthy! Hooray!


Thank you to Daddy and the kids for all of the fun visits, to those who have brought meals into our family, the sweet gifts and letters, help with carpools, and most importantly all of your prayers and concern.

Hospital Happenings

What's been happening here at the hospital since I last posted?


Saturday evening Mason was transferred out of the PICU and up to the third floor! Great step forward!!!


Mason's had a rough time finding the pain meds to keep him nice and comfy. He's just so tolerant to pain meds. Poor little guy. 


By Sunday he stopped having fevers!!! Yeah!


By Monday we seemed to have Mason's pain under better control, but he's very drowsy from all the meds. 


Being drowsy has made it rather difficult when he's needed to work with physical therapy, but he is still making progress. Baby steps right?!


Yesterday he sat up in a wheel chair 3 times for at least 30 minutes! And he looks so tall now!

As you can see, Mason was not too happy about getting into the wheel chair. But, he is so strong and he did it!

It definitely tired him out and he took a little snooze right in the wheel chair. Of course he had his little squirt gun with him for self protection!


Besides getting Mason to sit up in the wheel chair, Physical Therapy has tried to get him to bare weight on his legs and walk a little, but he hasn't cooperated very well with that yet.


Mason's respiratory junkiness had been much better for a couple days, but then last night got worse again. The docs and I can't quite figure out the cause of the setback. 


The respiratory therapists have been coming to our room to do "cough assist" treatments several times a day since last night. It's almost like a vacuum that sucks coughs right out of poor little Mason. He hates it!! But, it seems to be helping. I do think part of the problem is that he's still sore even with all the pain meds so he's hesitant to cough on his own.


Please pray that Mason's respiratory system can clear up and that his body can continue to get stronger so we can go home soon!


Here's a very tender sweet quote from Ronald Rasband's LDS General Conference Talk:
“A perfect body is not required to achieve a divine destiny. In fact, some of the sweetest spirits are housed in frail frames. …"

One Brave & Tough Little Boy

Sorry for not updating yesterday. For the most part Mason is doing okay with just a few little bumps in the road. I will say though, Mason continues to be one very tough and brave little boy!  The most positive event was that Mason was able to be extubated yesterday morning! He is still in the PICU and I foresee it'll be a couple more days before he is able to move to the third floor.


Wednesday night about midnight the docs got concerned about Mason's RBC (red blood cells)   being too low. It was surprising because we were told that he hardly lost any blood during surgery. Also, it shouldn't have any link to his Parvo virus/red blood cell issue from earlier in the year because his RBC count has remained stable since February. Finally by 2 or 3am it was decided that he needed a blood transfusion. Of course that is never an easy decision for a heart transplant kiddo because of the risk of introducing new antibodies that could fight against his heart. The doctors all concluded that the need at this time outweighed the risks.


Mason also began fevering Wednesday night. This can actually be very normal with any surgery, especially anything dealing with the spine. But, Mason's white blood cell count was also quite high. Slightly elevated WBC is normal after surgery due to stress and inflammation, but as high as Mason's was (26) there was concern of infection. That being said..... blood cultures, a protective brush sample from his airways, and a viral panel were taken to test for any infections. So far they all came back negative except for the brush sample came back positive for Viridans Streptococcus (a bacteria from the Strep family) and Staphylococcus Aureus (from the Staph family). Of course, right?! He is getting strong IV antibiotics to hopefully get rid of these yucky germs go into his lungs.


Trying to keep Mason comfortable has been tricky. His resistance to pain meds is rather high. What do you expect from a little boy that has taken meds such as Morphine since he was a newborn after each of his heart surgeries?! He is on a few different meds right now for pain and anxiety. Controlling his pain is key not only in keeping Mason comfortable and able to rest, but  also in enabling Mason not to hurt when he coughs. Being intubated along with the extra fluids one's body holds on to post surgery almost always makes Mason have an irritated and junky upper airway. Thus coughing up these secretions is important. Due to his junky airways Mason is still on oxygen, but that's okay if this it was his body needs to rest and recover.


Thank you for your prayers, love, support, and meals for my family at home.

Resting

Mason's surgery finished at about 4:30 today and then was taken to the PICU. We spoke with Dr. Smith who said the surgery went well and then at 5:00 we were able to see Mason.

He is still intubated (on the ventilator) and will be for the rest of the night. The docs left him intubated because of the sedation and pain meds which can sometimes cause kiddos after surgery to not breath deep and efficiently (especially kiddos with Mason's history).

The plan is to extubate in the morning after he gets a good night's rest.

For the most part he is doing well. The docs are just trying to find the "happy" dose of pain and anxiety meds. A couple times tonight it was very sad for me to see him try to ask for something, but couldn't talk because of the breathing tube, so tears would run from his sweet little eyes. And I'm sure some of tears are also due to being uncomfortable. I would be uncomfortable with two incisions in my back!!! As I said, they are trying to find the "happy" amount and combination of meds....which isn't always an easy task with Mason. He is very pain med resistant.

For those of you haven't followed Mason for the last few months, today Mason had the Vertical Expandable Prosthetic Titanium Rib or the VEPTR placed in his back. And this is because of his scoliosis that continued to get worse over the last 6 months. Poor little guy hasn't been through enough right??!! The major concern was that the curve (of 75%) was going into his only good lung and would sooner than later start to affect his pulmonary output. We also hope this will help him feel better balanced and have more confidence and strength in his walking. 

Here is a picture (3 x-rays put together) of Mason's new hardware:

 

top of Mason's spine 






















I think he'll give the airport security a run for their money the next time we fly anywhere!!


Thanks for your continued prayers this day and throughout the rest of Mason's recovery. I will update again tomorrow. Good Night!

Surgery Started

Just a very quick update.....

Mason was taken to the OR at 1:40. NO tears from the little guy even. With a little help of Versed given about 15 minutes before to help with any separation anxiety, he let the anesthesiologist take him into the OR riding in his favorite hospital mode of transportation, a wagon.

At 2:50 we got an update that it took about an hour to prep him, get an IV started, and an ART (arterial line used to monitor blood pressure) placed. Then at 2:40 the initial incision was made to begin the surgery.

The surgery should take until about 4:30. At that time Dr. Smith will come and give us a final update. Hopefully soon after that we will get to see Mason in the PICU, where he will be recovering.

Thank you for all you kind thoughts and prayers!!! I will update again this evening.

Happy 2nd Angel Heart Birthday!

 Today we celebrate one of the most special days our family will ever experience! Two years ago Mason received his Angel heart from a very special anonymous donor. Although we've never been able to learn the name of Mason's donor or anything about their family (because they have chosen to remain anonymous) we hold a very tender spot in our hearts for them and ALWAYS will. On the day they sent their baby to heaven our Miracle Mason's life was saved. I feel there is nothing more selfless than this!


As most of you know Mason's special transplant day was on Easter which seemed to be a miracle in and of itself! Easter will always have even greater meaning to us now. I want to quote myself from that day, "The most tears I have shed this day are in gratitude for our donor family. On this Easter morning they had to say goodbye to their sweet child. They donated their child's heart on Easter almost like our Savior sacrificed his life for us. He then resurrected on Easter just like our Mason has been given a new chance at life this day. I will be forever grateful to this family and pray that they will know of the joy they have brought to our family. I pray that on each Easter they will think of the gift of life they have shared with our family!"

I often wish I knew more about Mason's donor, but maybe someday we will when the time is right. Today we will send balloons into the sky in honor of this special child and their family. I hope our special donor will look down from Heaven and see his/ her balloons. I hope he/ she will feel of our extreme love and gratitude. To this amazing family, who thought to donate in a time of sorrow, I will feel always in debt to you for what you did for Mason and our family. Thank you!

(Notice Mason's shirt says,

"Property of Stanford")

Since Mason's heart transplant he has sure come along away. He still takes his time and goes at his own pace on certain things (like eating and walking), but the progress he has made is fabulous! At two years post transplant and at age 4 1/2 what is Mason up to?

~Walking with his walker or holding on to some one's hand

~Standing alone for up to 1 minute

~ Riding his plasma car (or wiggle car) all over the house and yard

~Throwing balls (baseball, football, lacrosse, etc....and he's got a GOOD arm!)

~Playing policeman (loves his guns, and sleeps with them lately)

~Working with his therapists and teachers that come to our house (He asks every morning, "Mom, is my teacher coming today?" He loves their visits)

~Playing on the ipad and leapster

~Still eating just snack foods....chips, pretzels, & popcorn being his favorites (tube feeds still give him the majority of his calories)

~Talking a lot!!! (especially at night when he doesn't want to go to sleep)

~Being a good sport about blood draws every 7 to 14 days still and echos every 2 to 4    weeks.

~There's much much more.... 

The above is just a short list to show how far Mason has come since he received his gift of a new heart and a 2nd chance at life here on earth. Before his transplant Mason was very weak and sick. Now he is a little boy full of energy who enjoys life to the fullest. Mason has taught us all how to find the silver lining in life and to dance in even the strongest of rain storms! To him I am grateful for all the lessons, to my Father in Heaven I am grateful for the strength to endure the bumpy road, to all of Mason's doctors, nurses, and caregivers I am grateful for you and the very important roles you have played and continue to play in Mason's journey, to all those who serve our family in times of need I am grateful for all you do, and most importantly on this day I am forever grateful to Mason's donor family! I pray that as this time of year is especially hard for their family remembering the loss of their baby that they will feel the comfort of our Heavenly Father.

One more event that also makes this a special week at our house is Preston's birthday. Preston will be 11 tomorrow!!! Wow how time flies! Preston, my second child and oldest son, is one very good kid! Preston is a great student, a good helper, a kind brother, an up and coming lacrosse star, an amazing skateboarder, and we love him so very much! 

HAPPY BIRTHDAY PRESTON!

Happy Easter to everyone from our family to yours! May you have a wonderful day!


My next post will probably be next Wednesday as Mason goes in for his back surgery.  Please pray some extra prayers for him that day.