3 Weeks Post Surgery and a Pre-K Student

This week has been a busy one in our household.  Monday was Labor day so it was nice to get an extra day as a family.  We were still recuperating from everything.  Kaylee started Pre-K on Tuesday.  I can not believe this is her last year at her school.  She has been there for 4 years!!  I am going to be one sad momma at preschool graduation. 

 

One of my goals while Kaylee was at school was to schedule all of Carson's doctors appointments that we are behind on from the surgery.  I called the first one on my list and it was the urologist.  The receptionist told me we needed to have another MAG 3 scan before we came in.  This scan is no big deal, but they would sedate him.  I pretty much told her I was not ready for that.  Ha, so when the cardiologist and mom clears him we need to do that.  This will give the urologist information needed before the second part of Carson' kidney surgery.  After that I never called to schedule all the others.  I do get very doctored out some days. 
 
It has been three weeks since Carson's surgery. Three of the most terrifying and amazing weeks I have ever been through.  I am in awe of how awesome he is doing after such a big scare coming out of surgery.  We had a follow up with his cardiologist today.  I am beyond delighted to say HIS HEART LOOKS GOOD!!!  Thank God.  He does still have the small clot that we are watching and giving baby aspirin for.  She is not worried about it and continues to think it will go away on its own.  He also got off of his lasix (fluid pill) today.  Yay, for having one less medicine to give.  We go back in 3 months and hopefully he will get off his other one then.  Again thanks for all the prayers.  God heard them and answered.

 

Carson's new favorite thing to do at the doctor's office; tear the paper on the table to shreds.

 

 

 

 Love these two to pieces ;)

 

2 Weeks Post Surgery

Two weeks ago today was the scariest day of my life.  I can't even begin to tell you the emotions I was having in the waiting room as I slowly realized something wasn't going right during the surgery.  Between it taking longer than they anticipated, the nerves in the nurses voice as she updated me, and that darn Mother's intuition, I knew something wasn't right.  As hard as it was to have your child come out of surgery on ECMO and a respirator with his chest still open, I am so thankful for the surgeon being cautious and doing what he thought was the best chance for little Carson.  Thank God, Carson is my little fighter because after only 12 hours his heart was doing its job on its own. A week later he came home with us and was crawling around and playing with his favorite toys. I have included some pictures of him right after surgery.  I wanted to include them because if you didn't believe in miracles before, you might after seeing the progress he has made in just two weeks. Don't worry everything is covered up. 

 

 

Two weeks later, besides some sleepless nights and a little bit of crankiness from pain, he is pretty much back to his smiley, active self.  One of the hardest things right now is that we can't pick him up under his arms and we have to scoop him up like an infant (a very big infant).  He is not a big fan of being carried that way and is hard to catch as he is crawling away.

 

Today we went for a follow up with his regular pediatrician.  The pediatrician could not get over how well Carson was doing after all he had been through.  Based on blood work drawn during his pre-op Carson's hemoglobin was low and he is anemic, so he will have to take some iron, to get some of his levels back up.  This is unrelated to the surgery and his number may be different since he had so many transfusions, but the doctor wants to be proactive.  All things considered this is no big deal, but another medicine he is not going to like.  The poor kid has figured out every trick we have for giving meds. 

 

I also wanted to thank everyone for their thoughts, prayers, meals, cards, offers to watch the kids, etc.  I truly believe his recovery is an answered prayer.

 

Above are a few pictures of Carson just two weeks after surgery.  He truly is a miracle :)

    

Home from Surgery Day 3

Today was was a much better day. Thank God! 

Carson's fever finally broke last night and since then he has been acting more and more like himself.  We never found out if his fever (and his cranky mood) was due to pain meds wearing off, upset stomach/gas, over exersion from the day before, or some combination of the three.  Whatever the cause, we are thankful to see that he seems to be feeling better, smiling, and getting around.  Included below is a picture of his with his favorite toy.

Home from Surgery Day 2

After an amazing day yesterday where Carson was crawling, laughing, and enjoying being home; today was a rough one.  He didn't sleep very well last night and today he spent most of the day crying.  It was absolutely pitiful.  If you know Carson, he rarely cries.  I think he has cried more today than he has in his whole life total.  Mid afternoon he started running a fever, which really scared us.  We called the cardiologist and were given instructions to give the Motrin an hour to kick in and if it went up any more to bring him to the ER.  Thank God, the temperature has gone down and we pray it continues to go down.  I am afraid this will be another long night.  Please pray for Carson's fever to go down and for him to continue to heal.  Mom and Dad could also use some prayers for rest.  Kaylee is handling this all pretty well, but you can tell it is starting to really take a toll on her.  She still can always get a smile from her little brother, he just adores her.  Charles' mom headed home today and my mom is still here helping.  We are so blessed to have such amazing families that have been a huge help to us.

Surgery Day #8, Home at Last

Carson had a much better night and got a decent amount of sleep.  In the morning the doctors and nurses began to process the paperwork for him to come home.  After running through all the paperwork about how to care for his incision, when to bathe him, what medicines to give, etc, we're ready to head out.  By around mid-day we were all packed up and in the car headed home.
 
Needless to say, the whole family is pretty excited.  Kaylee had even worked with her grandparents to make a "Welcome Home Carson" banner.
 
Carson has continued to amaze us with how back to normal he has been acting.  Today he has sat up and crawled without showing any signs of pain.  The only pain he has shown all day has been when he accidentally fell over on Mom's leg and bumped his incisions.
 
Had you told me last week that my little boy would be up and around, smiling, waving, and almost back to himself, I am not sure I would have believed it.  Last week at this time he was fighting for his life.  Seeing him on all the machines that were keeping him alive was one of the hardest things I have ever had to go through.  It was extremely humbling to be going through all this then hear peoples' stories that were dealing with so much worse and had been there for months.  I will never take for granted my childrens' health and every day we have with them.  God truly is the ultimate healer and the power of prayer is so amazing.  We just know that God has such a special plan for little Carson and all of his children.
 
 

Look Mom, no wires

 

Check out my ride outta here

 

Bye-bye to all the nurses and doctors, let's hang ten on the way out

 

 

Love having these two back together.

 

Carson getting right back to his drum practice

 

Surgery Day #7, Update #2

Today was Carson's first day in his new, step-down, room.  Not only is it great to be a step closer to home, but it is also encouraging that Carson no longer needs the same level of medical care as he did earlier in this adventure.

One advantage of being in a stepdown room is that we get to be in the room with him all day and come and go as we please as long as one person stays in the room with him.  However, one byproduct of this room is that if Carson gets his days and nights confused, there are fewer nurses to split the overnight shift with you.

Carson's cardiologist came in this afternoon and gave us the good news that Carson should be able to go home tomorrow.  There was a small clot that she saw in the echocardiogram that she will be paying attention to and treating with a little bit of baby Aspirin.  It is something that she thinks will resolve on its own.  This was concerning to us as parents, but she assured us that this is somewhat common with surgeries and was something to pay attention to, but not worry about. 

The night nurse was just in taking out his last IV line, leaving only with the standard heart rate, respiratory rate, and oxygen level sensors.  When he is discharged, Carson will be sent home with only two prescriptions to aid in the heart healing process and over-the-counter pain meds for the pain (Tylenol and Motrin).

He has continued to act more like himself all day.  He has been talking, waving smiling, staying in a sitting position, and even rolled over once.  Included below are some pictures of Carson being Carson.

  

It continuously amazes us to see the power of prayer in action.  Thank God for the amazing doctors and nurses who have been awesome and for all the friends and family who continue to pray and support us through all of this.  Our little man is a fighter.

Surgery Day #7

I think last night we all kind of hit the wall.  We are all very tired, including Kaylee and grandparents.  It is really starting to take a toll on Kaylee and as a parent it is so hard to spread yourself between children.  I also think now that Carson is doing well the realization of our journey since last Wednesday is really setting in.  It is emotionally draining to have such ups and downs.  I have never been more scared in my life than realizing my child's heart was beating because of a machine.    I can't even began to tell you how thankful I am to the amazing nurses and doctors that have been taking such good care of Carson.

Carson had a good night last night, but decided sleep was over rated.  By around 10 this morning he had had bloodwork, x-rays, an ECHO, and respiratory therapy.  He is a busy guy!  His bloodwork and chest x-rays came back good and we will have the results from the ECHO this afternoon when the cardiologist comes by.

Carson is taking his bottles (in smaller doses) and even had some yogurt this morning.  He is his usual happy self waving and smiling as long as he is good on his pain meds.  Ha, he pretty much starts crying the second he sees anyone in scrubs....can you blame him?

Charles and I finally got to hold him as we walked him down to get his x-ray.  I can't tell you how much I missed holding my (not so) little guy.  Because of his sternum we have to hold him like an infant which is a challenge since he is almost 18lbs.