We are Home!

Well the good news is Carson is done and we are home!  He is still a bit drowsy and seemed to be in some pain, but is resting comfortably now.  Everything looked good during the scope, but there was some narrowing (which the doctor thinks he has always had) and a slight amount of scar tissue but nothing worth getting too invasive with.  So, needless to say this ended up being more of an exploratory procedure.  Because of this they didn't make us spend the night...YAY!!!  The downside is we still aren't sure why he is having these episodes.  The doctor is hopeful he will out grow them.  Until then we are going to watch a few things.  One being his tonsils, as he gets older and they enlarge this could cause breathing problems.  Another is to try reflux meds again and to continue the steroids as needed.  We are very grateful it isn't anything serious, but still a little concerned as to what is going on.  Thank you for all your prayers today.

Bronchoscopy Update #1

We arrived around 7 am with a very hungry little guy, we went back to the pre-op room and they finally gave him goofy juice around 9:30.  After that we had one goofy little guy, but he was much more relaxed. They took him back to surgery around 9:45 and he should be in surgery for 1-1 1/2 hours.  While they scope him they will do anything that is needed to correct the narrowing of his airway.  The ultimate goal is to prevent his croupy breathing attacks.  Mom and Dad are hanging in there, it is never easy to see your child rolled of but we have some relief in knowing it is a pretty minor compared to others he has been through.

What A Crazy Spring!

 

Soo I am a little behind with post.  I can't even begin to tell you how many firsts Carson has had since I last posted.  He had his first trip to the zoo, saw his first Disney on Ice, he was in his first wedding, and he stood up for the first time on his own and walked across the room.  We have a walker! (even though his preferred method is the bear crawl).

Since February we had a wonderful Easter, some Spring Break Rodeo fun, Kaylee's 5th Birthday, Kaylee's Pre-K graduation (this Momma isn't sure she wants her baby growing up quite so fast), Mother's Day, and lots of wedding stuff for my sister and her new husband.  The wedding was last weekend and it couldn't have ended up more perfect.  It was beautiful and we are so excited to have Josh as part of the family.  We were so busy I forgot to take many pictures so I hope that someone else got some of us.  It has been a crazy, fun Spring!  Whew, we are ready for Summer!

Here we go again...We had Carson's pre-op on Monday and this coming Monday he will have another procedure (sounds much nicer than surgery).  He will be having a bronchoscopy (http://www.webmd.com/lung/bronchoscopy-16978) with possible ballooning to stretch out the airway or laser to remove any scar tissue from previous surgeries.  We are hoping to find the underlying cause of his croupy breathing spells. We will keep everyone updated on the blog and are so thankful for all Carson's pray warriors.  You all have gotten us through some pretty rough times so thanks for the continued prayers and support for our family.



 



        
    

 

18 months old

Wow, these past few weeks we have knocked out some doctors appointments.  We went for Carson's urologist follow up from his surgery and everything looked great.  We just have to go back in a year and make sure the right kidney is taking over.  Last week we had a 18 month well visit and an optometrist appointment.  Carson weighs close to 20 lbs (34% on T21 curve) and is 30.3 inches (56% on T21 curve).  He is doing several signs (more, banana, ball, book, cracker, eat, thank you) and tries to say some words by their beginning sounds.  He is cruising everywhere and walks with a walking toy, but is not a fan of standing by himself.  Carson likes to climb on top of things and throw pretty much whatever he can get his hands on.  He LOVES bubbles.  We go to a new ENT at the end of the month to double check nothing is going on with his airway since he has reoccurring croup.  Ha, of course since we made the appointment he has not had it, but we won't complain.
 
 
We are about to hit his 6 month anniversary from heart surgery.  He is doing great.  We still give him half a baby aspirin everyday for the blood clot, but pray the next time we go it will have dissolved.  Here is a picture of his battle wound.  It really looks good and is fading so much we do not even notice it sometimes.  Mommy is still recovering from the anxiety of almost losing him, but he doesn't even know what a miracle he his.  One day we will tell him what a strong little boy he is and all that he has been through.
 
 
I think our most favorite thing to do is just to get away for a little while as a family.  We enjoyed a fun day at the Heard museum last weekend checking out their dinosaur exhibit.  We love being free of doctors appointments and reminders of everything we all have been through and just enjoying being a family.  I love these two so much!


 
 

 

 

Kidney Surgery Update #6 - Home at Last

Carson was cleared to come home at 3:00 this afternoon.  After they gave him his last dosage of medicines and we signed all the appropriate paperwork we were free to come home.  Carson was sound asleep in the backseat by the time we made it to McKinney, but seemed happy to be back in familiar surroundings once he woke back up.

Thank you again to everyone for the continued thoughts and prayers and for our parents for being so helpful.

Kidney Surgery Update #5

Carson had a pretty good night.  The morphine helped with the pain, but would drop his oxygen levels. He was not a fan of the nasal cannula and kept pulling it out.  We finally had the nurse remove it and put the oxygen mask by him if needed.  He was a lot more comfortable without it.  

Ha, Charles and I had a big surprise when we went to pull out the love seat and it was not our usual two person bed, but a single one.  This made our sleeping arrangements interesting.  Needless to say we are both pretty tired this morning.

The urologist came by this morning and said Carson looks good.  They switched up his meds some and as long as he is comfortable and is cleared by the respiratory doctor there is a chance we could go home later on today.

We are so thankful for Charles' parents who are up here and continue to make sure we are fed and for my parents for keeping Kaylee entertained in Houston.  We are so blessed to have great friends and family and we thank all of you for your continued prayers they are working.

Kidney Surgery Update #4

Carson has not been a very happy camper for the past hour or so.  There are three things that we are paying special attention to:

1. Low oxygen levels, most likely due to morphine being used for pain management.  A cannula was placed under his nose, and Carson is most definitely not a fan of the new addition to his face.
2. Some strider breathing, most likely due to agitation in the airways while being put under anesthesia.  This is being treated with a little steroid to help open up the airwaves (will hopefully help with oxygen levels as well)
3. Pain management, Carson has woken up a couple of times in obvious pain.  We are needing to stay on top of his pain meds and when he gets them so that we can minimize the pain he experiences.

After quite the battle getting Carson to take his meds and not pull out his cannula, he has calmed back down and is resting peacefully.

Kidney Update Surgery #3

Carson has now been transitioned into a step-down room.  When we first saw him in recovery, he seemed to still be in a lot of pain, but (after some pain meds) seems to be resting more comfortably now.

We are grateful to have this surgery behind us and there is additional comfort in knowing that some of the nursing staff helped care for him during his last stay (so we know we're in good hands).

Kidney Surgery Update #2

The surgeon just came out to tell us that the surgery went great and was completed with no issues.  Carson is in recovery and we are waiting to be called back to see him.  A continued thank you for the prayers and well wishes.

Kidney Surgery Update #1

They took Carson back around 8 am.  He was given some goofy juice so he was in pretty good spirits. The surgery should last around 2 hours. They will remove the non functioning left kidney, scope his bladder, and close his tube.  Thanks for all the thoughts and prayers.

Tis the Season

Since I last wrote we have been going like crazy.  It is just that time of year with Halloween, Thanksgiving, and soon Christmas.  We are 4 months post surgery.  Carson is doing great.  His scar is starting to fade and it is so great to go in to a doctors appointment and see is oxygen at 100%.  Carson is defiantly recovering quicker than mom.  I have really been struggling with anxiety after almost losing my baby.  Each day truly is a blessing you have with your children.  Treasure every moment. 
 
At Carson's 15 month "well" visit we learned he is a little over 18lbs (18% T21 curve, and not even on the typical curve), 29 inches (47% T21, 2% typical). Basically he is just a little guy, but he is right where the doctor would like him to be. Developmentally he is at a 11-15 month level!!! Yay, we hope we can keep doing so well. He is starting to mimic words, cruising, pulling up on everything, and just started climbing on top of things. He also has 6 teeth now!

We have had a crazy past two months with sick kiddos.  My kids are usually pretty healthy so I shouldn't complain, let's just hope we are all on the mend. It started with Kaylee getting croup around Halloween and us having to make an ER trip with her.  Then, two days later, Carson came down with it.  The next week Carson had his kidney scan.  The next week we went in for Carson's 15 month "well visit" and were unable to do shots due to petechire (little red dots) on his stomach.  They ran up a full CBC to see what was going on.  Needless to say mom was freaking out, but the blood work came back fine.  Two days later he got the croup again.  He was finally doing better than he started getting really sick and had a really high fever....back to the doctor.  They think it is a stomach bug. We waited a day to leave for Thanksgiving to make sure no one else caught it.  Thank God the rest of us stayed well. After a week of a low grade fever and a cranky baby, he got the croup again, and then an earache.  After a round of antibiotics we finally got well shots, then that night Carson got the croup for the 4th time.  Needless to say we made a ENT visit and the scoped him.  His anatomy all looked great so we aren't sure what is going on.  Prayers we can stay healthy. 
 
Last week we got results from the kidney scan.  The kidney is only functioning at 11% and they are recommending removal.  This is really hard to hear because we did the surgery last year to try to save it.  We will meet with the doctor tomorrow to get more details.  Needless to say we will be having a surgery to remove his left kidney on December 28th.  I can't even begin to describe the overwhelming anxiety that is all coming back at the thought of going through another surgery.  Please pray for my whole family as this is really hard on all of us.  I am thankful the other kidney seems to be healthy and will take over for the one that never formed properly.
 
We already celebrated one Christmas with the Koch Family at Thanksgiving and look forward to celebrating Christmas with the rest of the family in the next week.  It is our family and friends that keep us going and I am so grateful for all of you.

14 months

The months are just flying by.  Our little man is 14 months old today.  I can not believe all he has been through in his short little life here on earth.  It as been about a month and a half since his heart surgery and he is doing incredible.  You would never even know what all he went through if it weren't for his battle wound on his chest.  Carson is such a trooper and anyone who has ever met him knows what a joy he is to be around.

Carson had his first PT since his surgery and I am happy to say he hasn't regressed any and is continuing to hit milestones.  He has pulled up to standing several times and we are working on cruising while stand up holding on to things.  I am so excited to say...WE FINALLY HAVE A TOOTH.  I was starting to wonder if he had any.  Since Carson's surgery he is eating like a champ so I am glad he finally has a tooth to help him out a little. We have several upcoming appointments that I will be excited to check off of our list (ENT, Ophthalmologist, and recheck on hemoglobin).  I am hoping to get good news on all three and would love to be able to get Carson off the iron or get him on a lower dose.  We still need to schedule a Mag3 renal scan to check Carson's kidney.  This is the step before scheduling what we hope is his finally surgery.  Oh dear God just help me get through this year.  I can't even begin to tell you how wonderful it will be to not have the constant anxiety of an upcoming surgery lingering over me.  Some months just get so overwhelming with doctors appointments but I am hopeful that the number of doctors appointments will decrease and become less frequent.  His therapies will pick up, but I think of those as a good thing for him.  He works so hard to accomplish his milestones. 

Last weekend we were able to enjoy a family trip (and Gram) to the Arboretum.  We always enjoy all the fall decorations.  I have decided it is almost impossible to get a picture of both kids smiling and looking at me at the same time.  I took what I could then decided to just enjoy the scenery. ;)

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.  

Surgery Day #6

Today has been another great day for Carson.  Most of the morning was devoted to removing sensors, lines, machines and medicines.  While this was great news for his progress and for his parents, Carson was not quite as thrilled at the time because this also involved a lot of pulling off adhesives and removing IVs.

To summarize, the nurses first removed his subclavian line, his oxygen, and his art line (where his primary IV was located on his wrist).  A byproduct of taking out his primary IV was that he is no longer on any of his drip medication (including Melrinone, which we had been working on weening for quite some time).  After a breathing treatment they removed the oxygen sensors from his head and kidney.  All of this got Carson pretty worked up so they then put his oxygen line back on for a few minutes to calm him down.

After a couple of bottles and a good nap, the nurses began to process the paperwork to remove him from the Cardiac ICU and transition him into a step-down room.  As I am writing this, we have just made the transition into his new room and Carson is busy taking in the new scenery.

Needless to say, this has been a pretty exciting day for all of us.  Not only because Carson continues to do so well but also because we know that we are a next, major, step closer to being home.

Included below are a couple of pictures from today.  We are getting smiles and waves from Carson again, a definite sign that he is feeling better.  There is also a picture of Kaylee, she got to go into a mock operating room at the hospital and play doctor.  It was a pretty neat setup and she seemed to have a great time.