Saturday, December 29, 2012

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.

Friday, December 28, 2012

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.

Sunday, December 16, 2012

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.

Monday, October 1, 2012

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. ;)

Wednesday, September 5, 2012

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 ;)
 

Wednesday, August 29, 2012

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 :)
    

Friday, August 24, 2012

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.



Thursday, August 23, 2012

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.

Wednesday, August 22, 2012

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
 

Tuesday, August 21, 2012

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.  

Monday, August 20, 2012

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.



Sunday, August 19, 2012

Surgery Day #5

Carson is continuing to progress well.  He has been drinking his bottles so well that the nurse removed his feeding tube this morning.  Now that the feeding tube as been removed, there is only one tube remaining in his nose and mouth (the oxygen line running under his nose). 

Carson's neighbor in the hospital had a very rough night last night and most of the nursing staff was pulled in to help.  Fortunately, Carson has been in very stable condition but this caused him to get behind on some of his pain medicine.  As a result, he seemed to be hurting pretty bad this morning and it took him quite a while to get calmed back down. Once the pain meds kicked in he seemed much more comfortable.

Carson's drip lines into his IV has been reduced to 4 (from 16).  There are still a couple of critical meds that we are working to ween him from. 

Carson had quite the visitor list today, he got to see all of his aunts and most of his uncles as well as both sets of grandparents.  We are still allowed to have 2-3 people in the room at a time and Carson enjoyed waving and smiling at everyone as they paraded through.

Tomorrow morning, Carson will get a tube and his pacemaker lines removed.  These will be two of the last three sensors that are connected directly to his heart.  If everything continues as planned, we are anticipating being transitioned to a step-down room either Monday or Tuesday with a potential discharge as early as Wednesday.

We can't thank all of you enough for all the prayers and well wishes that we have received. 

Saturday, August 18, 2012

Surgery Day #4, Update #2

Carson drank his first liquids today.  He was able to drink 2-3 ounces of Pedialite this afternoon.  We were able to offer it to him in a bottle and he finished it off pretty quickly.  This was the first time he has eaten since before his surgery, so it shouldn't have been such a surprise that he was so hungry.  Since he has done a good job of keeping it down thus far, he will start getting liquids every three hours (not sure yet if they will wake him up to eat if he is sleeping).  After a successful first round of feeding, Carson enjoyed a bottle of breast-milk before the night was through.

The nurses have also been helping to position Carson in a sitting position today.  Doing this for too long wears him out, but it is a great way for gravity to assist in getting all the fluids in his body to settle into the right places.  After sitting for about 45 minutes this afternoon, Carson was pretty tuckered out and settled down for a good little snooze.

Both his surgeon and his cardiologist came by to check on Carson today and both were excited about the progress Carson is making.  Even better, neither of them showed any signs of concern for his current state.

We are excited to see that Carson is continuing to look and act like himself a little more each day.  Included below is a picture of Carson enjoying his Pedialite earlier this afternoon and a picture from Kaylee's visit earlier.







Surgery Day #4

Carson has a had another day of progress.  Charles stayed with him at the hospital last night while I stayed with Kaylee and Aunt Shanna at the hotel.  I am not quite sure how much sleep Charles is running on since Carson gave the nurses and doctors another wild night.

I got a text from Charles at around 11:30pm that Carson's heart rate and blood pressure had dropped and they were giving him some dopamine.  Once it raised his blood pressure the heart rate went back up.  

Earlier this morning, they removed the drain tube from his heart.  This means that there is no more bleeding from the heart as a result of the surgery.  Right after doing this, the nurses adjusted his respirator settings so that Carson was fully breathing on his own (these new settings made it work more like a CPAP machine than a respirator).

A couple of hours later, the nurses came back in to remove the respirator tube all together and replace it with an oxygen line that runs under his nose.  This was supposed to be a quick, simple, step but the removal of the nose line started a massive nose bleed.  There was so much blood that Carson ended up swallowing a lot of it and it also ended up all in his nose, mouth, and throat causing quite the suction and clean-up effort.  All is good now and he is back on the track for recovery.

I can not tell you how wonderful it is to see my precious babies eyes not only open but looking around.  He has a few toys attached to his bed and he is enjoying watching them.  It does break your heart to hear his hoarse little cry because you know he is in pain, but the nurses are doing a good job of staying up on the meds.  The last time we went in he is resting comfortably and the next major milestone was starting to get some food in his stomach.

Just a couple of minutes ago.  Kaylee got to go in and see her brother for the first time since the surgery.  We'll add a couple of pictures later today. 

God is amazing and all the prayers are continuing to work.


Friday, August 17, 2012

Heart Surgery Day #3, Update #3

Carson is continuing to make significant progress today.  His sternum was closed this morning and the nurses have been removing machines like crazy since he is now all closed up.  Since late morning, he has lost 8 of the 16 drip lines that he was previously on.  One of these was the epinephrine that we have been working so hard to get rid of. 

Another big step is that Carson is no longer on his sedative and he is starting to wake up.  As you might expect, he is still quite groggy, but we have seen some finger and toe movement and even a couple of quick peeks from his eyes.  As the day moves on, we hope to see more and more movement from Carson as he slowly awakes.

Included below is a picture of Carson from earlier this afternoon.


Heart Surgery Day #3, Update #2

Carson is out of surgery and recovering.  His sternum is now closed and his heart is pumping well.  We are still waiting for them to clean up the room before we can go back.

Heart Surgery Day #3

When we got to the hospital this morning.  We found that Carson had a great night and that his chest is ready to close up.  As I am writing this right now, we are in the waiting room at the hospital so they could turn his room into an OR to perform the closure.  This process should take about 30-45 minutes.

The closure of his chest will also start the clock on when we can begin removing some of the machines from his room (i.e. - getting him off of sedation, off the respirator, etc.). 

Thursday, August 16, 2012

Heart Surgery Update (End of Day 2)

Today was a very encouraging day.  Carson has remained in stable condition since coming off of the ECMO machine this morning and we are anticipating closing his sternum tomorrow if the trend continues through the night.

There are two things that are still causing some concern with the doctors and nurses: First, every once in a while his heart rate will drop from the expected 150 beats/min to about 80 beats/min.  While it will eventually return to the expected rate, this is causing his external pacemaker to kick into action.  There is still optimism from the doctors that this will cure itself with time as his heart continues to heal.  We will learn more from talking with the surgeon again during his morning rounds.  Second, one of the nose swabs they ran on Carson yesterday discovered that there was some staph.  As the day matured, we came to realize this is something we need to be careful about but that the staph strand was inactive and it is not preventing any of Carson's healing steps from taking place.

Other tid-bits of information:  The nurses lowered the oxygen content on his respirator from 80% to 35% (meaning that he is breathing air that is much closer to room air).  The nurses are also still in the process of weening him from some of his medicine.  He has weened himself down to the lowest dose on a couple of them and there is hope that he might make it the rest of the way overnight.

Thanks again to all of you for everything.

Heart Surgery Day 2, Update #3

Noon -  Today we found out that Carson's blood work was  positive for staph infection.  The nurse was talking to the doctor to see what (if anything) needed to change.  For the time being, there is little changing on our end except that we need to be extra careful with germs and limit the number of visitors.

Around 2:00 or so, Carson's hemoglobin was low and they were giving him a blood transfusion.  Not long afterwards, the color in his lips was already starting to come back and we'll know how well it worked when they pull his labs again later today.

Overall, Carson is continuing to look better and better.  He has been quite stable all day and we appear to still be on schedule for reconnecting his sternum and stitching up the wound some time tomorrow.

Big sister Kaylee came up to the hospital to visit today.  We didn't let her in to see Carson connected to everything but she had a good time exploring all the different areas of the hospital.  There are a couple of pictures from her visit that we'll attach later on. 

Kaylee with Snoopy and Mickey

Carson After Surgery (Day 2)

Carson getting a visit from Snoopy



Heart Surgery Day 2 - Update #2

8:30 (ish) - We made it up to the hospital this morning right before morning rounds.  From talking a little more with Dr. Mendlehoff and the other doctors, Carson is doing a lot better.  I never thought I would say this, but even though he still has his chest opened up and is hooked up to a ton of machines, he is looking much better.  The first half of today will be dedicated to keeping Carson stabilized now that he is off of the ECMO machine and they are also trying to ween him off of epinephine (adrenaline).  From there we can begin to have conversations about when to close up the hole in his chest.

There was an external pacemaker that was hooked up to Carson as a backup.  We learned this morning that his pacemaker was firing earlier this morning because his heart-rate dropped below 120. Soon afterwards, his heart-rate was back where they wanted it (about 150) and the pacemaker was put back in an idle state.

Thanks again to everyone for the thoughts and prayers.  Quite obviously, we're hoping that the positive progress continues.

Heart Surgery Day 2 - Update #1

I was awoken this morning at 4:45am with a call from the CUICU (Cardiac Unit ICU) doctor.  Talk about a way to get your heart going in the morning.  Carson was have some oozing around his heart/bandage and they were calling in the surgeon to come and suction it out because they didn't want all the pressure on his heart.  Needless to say I was not able to go back to sleep.  It is the worst feeling in the world to want to be there for your child but know that there is nothing you can do for him.  All I could do was pray. At 6am I got another call and it was from the surgeon....again nearly had a heart attack.  Anytime the doctor calls I get really worried.  First thing he said was, "Mom, I have some good news, ..."  (FINALLY!!!).  When they were cleaning him all up the doctor  really liked the way the heart was pumping and they pulled him off of ECMO machine much earlier they they were anticipating yesterday afternoon.  The next 24-48 hours are still really critical.  We need his heart to continue to heal.  He is completely sedated so that he can just rest and work on healing his heart.  His chest is still open so that they can watch for swelling, but they hope to have it closed in the next day or two.

I have read several comments from families who have already had or will be having a similar procedure.  I want you to know that Carson's extra set back is rare.  He just has a sensitive heart and it needs some time to recover.  The doctors and nurses are amazing.  Everyone is doing everything they can to make this as positive an experience as it can be.  


Our sweet Carson is one of the most prayed for little boys I know.  Please keep the prayers coming...they are working!

Wednesday, August 15, 2012

Surgery Update #6 (End of Day 1)

10:00 - Carson was all set up in his Cardiac ICU room about 4:30 or 5:00 and we were finally able to go in and spend some time with him.  He is still hooked up to an insane amount of machines (20+ at best guess) and he has two dedicated nurses with him 24/7.  One nurse is dedicated to ensuring the ECMO machine pumping and oxygenating the blood the way it needs to and the other is dedicated to making sure all the other vitals/fluids are just right.  Carson's game plan for the rest of the night is to stabilize so that we can try again tomorrow to start weening him from some machines.  Despite all of this Carson still has his sweet face and is quickly winning over all the nursing staff.

Kelli and I were up at the hospital until about 10:00 or so and will now try (emphasis on try) to get some shut-eye before heading back to the hospital in the morning.  He is scheduled for a full suite of labs, tests, and scans (Sono, EKG, etc.) in the morning, after which we'll get a chance to see how his heart is performing and how much longer he needs to be on the ECMO.

Overall, all the nurses and doctors have been great at taking the time to explain the purpose of each of the surgery steps, procedures, medications, and machines and why they are needed to make sure that Carson recovers the way that he should.

Thanks again to both of our parents for hunkering down at the hospital with us all day and for all of you who have been helping out and praying for our little Carson to get better.

Included below is a picture from earlier this morning (don't worry, it was before the surgery)


Surgery Update #5

3:30 - Carson is now "officially" out of surgery and has been transitioned from the OR to the Cardiac ICU.  We got to sneak a quick peek and a kiss as his entourage of nurses and doctors were going from one area to the next.  They are now getting him all set up in his new room with all the supporting cast of machines he will need.  That process should take about 1-2 hrs, after which we will be able to see him (2 at a time).

Needless to say, it has been a rather long and exhausting day.  We continue to be thankful for all the prayers, thoughts, and well-wishes that we have been receiving the entire time.

(Written by Charles)

Surgery Update #4

2:00 - The nurse and our cardiologist just came back out.  The reason the surgery is taking longer than expected is that they were seeing some issueswhen they tried to bring Carson off of the heart / lung machine.  

To go into a little bit more detail, after Carson's heart was pumping again on its own, the surgeon was not pleased with the pump motion and they were still seeing a little bit of leaking in one of the valves.  From there, they put him back on the heart / lung machine so they could clean up the valve.  After this cleanup was complete, there were issues with getting Carson off the machine the second time.  To help ease this transition, they will be placing him on an ECMO (Extra Corporeal Membrane Oxygenation) machine that can slowly decrease magnitude of the heart / lung bypass while slowly increasing the amount of work that his heart is doing.  The best estimate at the time is that he will remain on this ECMO machine for 24-48 hours until his heart healed enough to carry the full load.  

A byproduct of the events above is that the surgeon will not be closing the incision in his chest until he is off of the ECMO machine.  This will certainly take some getting used to, but it will allow continued access to Carson's heart while we are waiting for confirmation is is healing the way is should.

Thank you all again for your continued prayers.

(Written by Charles)

Surgery Update #3

12:55- Just received a call from the nurse that Carson is still in surgery.  This is longer than we anticipated.  We are getting really anxious.  Please continue to send prayers our  way.

Surgery update #2

10:15 - The nurse just called and Carson is on heart / lung bypass now and they are working away on him.  Next update will be in about and hour or so.  It is so scary to think a machine is keeping your child alive right now.  It is amazing what all can be done through technology and the skill of a very talented surgeon.  We thank God these technologies are available and will fix Carson's little heart.  

Surgery update #1

Carson was taken back to surgery around 7:15am. Handing him over to the doctors was the hardest thing I have ever done, but I know it is in God's hands now.  Our Pastor was able to make it out to pray over Carson.  I can not express how thankful we are for all the thoughts and prayers. 

8:30 - the physicians' assistant came by to tell us that they successfully made the incision and that they are about to go through the transition to the heart/lung bypass machine and begin the repair of Carson's heart.  So far so good and everything is still going according to plan.




Tuesday, August 14, 2012

Pre-Op

As I am typing this my heart is pounding and I am pretty sure I am having a mini panic attack at the thought of my child having open heart surgery tomorrow.  I must say that the pre-op has eased some (emphasis on some) of my nerves.

We arrived at the hospital around 10am and they took us right back to do all of the registration, history, and blood work (Carson did not like that part).  We also met with the child life specialist who gave us "beads of courage" (http://www.beadsofcourage.org/) and talked to us about getting through it all and how to talk to Kaylee about it all.  She also gave us a bag of goodies for Kaylee to play hospital with.  Then she walked us over to the Cardiac ICU Unit and gave us a tour.  This is where we met the surgeons' PA who walked us through the surgery and recovery.  We then went to do chest x-rays to make sure Carson's lungs were clear.  He was a real trooper through everything.  Finally we were able to meet Dr. Mendeloff, Carson's surgeon.  He was wonderful and walked us through everything step-by-step and drew it all out for us.  Ha, I think I know the whole anatomy of the heart now.  We learned that the surgery will take about 3.5 to 4 hours.  He will then go from the OR to the Cardiac unit where he will get situated for another hour or so.  We will get to sneak a kiss in between the two.  Carson will be in the cardiac unit for 1-3 days and then a step down room for another 1-2 days.  It was comforting to know that the surgeon does 400 surgeries a year and has been doing this for 17 years.  Even though it is a huge big deal to us, it is just a normal day in the office for him.

Thanks so much for all the thoughts and prayers.  Please forgive us if we don't get back to everyone.  We will try to keep this updated as often as possible tomorrow.

Wednesday, August 1, 2012

One Year Ago...


A year ago today, my precious little boy was born.  I can't tell you how scared I was when I was told it was time.  I was quickly whisked into surgery.  I had so many thoughts going through my mind...I wasn't ready, it was too early...I still had 6 weeks to go, is he going to be okay (we already knew he had trisomy 21, an enlarged kidney, and a heart defect), what will he look like (I had even looked a pictures of babies with down syndrome to prepare myself), had we really prepared ourselves for the arrival of our son, how was I going to explain all of this to my daughter...  Then they put him in my arms.  I did not see the Down's syndrome, I saw a precious little boy with blond hair (yes, blond..totally surprised us) and I was totally in love.  I don't remember much after that.  I just know he was rushed off to the NICU while I recovered.  The next 20 days were a whirl-wind as Carson stayed in the NICU and we traveld back and forth trying to get that little bundle to eat.  The nurses were wonderful.  It was then I realized he was just like any other baby.  He might need a little extra care, but we loved him more than words could express and so did everyone else that came in contact with him. 

This year has been one of the longest and shortest of our lives.  We had no clue what life would be like when we found out Carson has Down's syndrome along with other health issues.  There was no way to fully prepare.  I must say it has been way eaiser than I ever imagined.  Now I didn't say it was easy.  It has been hard at times (okay very hard).  We have good days and tear filled ones (lots of them).  The hardest thing right now has been the surgeries, especially the upcoming heart surgery.  I am pretty much a nervous wreck and the surgery is still 2 weeks out. For the most part we have a pretty normal life with a few more doctors visits and therapies.  We do all the same things any family does.  Kaylee does swimming and gymnastics, Carson has therapy.  Carson has blessed us with many new and wonderful friends and a great support group.  He has opened our eyes to a whole new world.  A much slower one, where we take one day at a time.  We are so fortunate to have such amazing family and friends.  I thank everyone for all the prayers, support, dinners, shoulders to cry on, and most of all people to celebrate a very special and wonderful life with. 

Last weekend we had Carson's 1st birthday party and we celebrated with close family and friends.  It was a dinosaur theme and tons of fun.  It is always such a blur when you are hosting the party, but everyone seemed to have a great time.  Kaylee was a good party planner and had fun helping me.  This birthday was so bittersweet to me.  As happy as I was about celebrating his first year of life, I knew it meant it was time for his heart surgery.  I am trying not to focus too much on the scariness of it all and focus on the healthy heart he will have when it is all over with.  Please continue to shower us with prayers for strength as we get nearer to his surgery.

                                                              
(Here are a few new pics of the kiddos by Diana Busch Photography)


We have our one year old well check tomorrow.  So I will update all the weight/ height and developmentally stuff later on this week.  I am not sure if I have shared on the blog, but we have a crawler!  We couldn't be more proud of all the work Carson puts into everything he does and  big sister for cheering him on.

Wednesday, June 13, 2012

10 months

Carson turned 10 months on the 1st and decided to get himself to sitting by himself.  This was a milestone I felt like we had been working on forever.  He started sitting by himself (when placed in sitting) at six months, but it takes a lot more muscles to get himself to sitting from the floor.  He quickly figured out how to do this in his bed, so we finally moved his bed down.  He is also starting to pull himself to standing with minimal help, yay Carson.  He is able to roll all over the floor, but shows no interest in crawling (below is a rare picture of him up on his knees).  He has started to do a crazy inchworm roll to get to things.  Ha, we may just skip that and go straight to walking.  We will take what he wants to give us. 


Carson went to the opthamologist on May 21st. Carson seems to be seeing pretty well. His left eye does drift some so they are watching it. The doctor thinks he is able to control it so we are hopeful that it is something that he will out grow. Good news is this is something that can be easilty fixed if need be.

For Memorial Day weekend we were able to spend a long weekend with friends and Charles' parents.  The kids had lots of fun with Gram and Gramps exploring, making smores, and swimming.





Carson had a cardiologist appointment last Wednesday and they did another sono.  Carson's VSD looks about the same and his PDA is still open.  As expected, we discussed planning the surgery about the time of his 1st birthday.  Friday I received the call from the surgeon's scheduler; we are set for surgery on August 15th.  August 15.....just the thought of this date makes me sick to my stomach.  When I got the call and started writing down the date, I immediately started shaking.  It all hit me, how real, how close....this is really going to happen.  My poor baby has to have surgery on his heart.  I keep telling myself how blessed we are to have great doctors that can fix his heart and how healthy this will make him.   Please pray for strength for us as the surgery approaches.  We know this will be hard on all of us.  We want to make the right choices for where Kaylee needs to be during this time and how we want to handle everything.  Most of all we want to make sure Carson stays healthy so he can be strong for his surgery.



So I just had to include this picture of Carson's first
trip to Lowe's.  Kaylee and him had a blast driving the "car".
Sometimes these little moments between siblings are the memories that you will remember forever.

Thursday, May 17, 2012

My babies are growing too fast

Carson turned 9 months on the 1st of May.  This was a hard one for me.  Maybe because the realization of how close he is getting to his heart surgery set in.  A year always seemed so far away and realizing it is only 3 months away now scares me to death.  Maybe it is because it is just hard to see your baby growing up.  Besides from the dread of the heart surgery, he is doing great.  He is working so hard to get to sitting on his own.  We are also working on crawling on all fours and pulling up to standing.  The PT will take whatever method of mobility he wants to give us.  Right now he can move around in a circle on his stomach than roll until he gets what he wants. 

Carson is not a big fan of baby food.  He only wants to eat puffs and mum-mums.  We are working on getting him used to eating different textures and wanting to eat off of the spoon. 

Carson continues to be such a joy.  He is the happiest baby you will ever meet, but does have a funny little way of letting you know when he doesn't want to do something.  He doesn't have any words yet, but says something very similar to "hi" and likes to grunt.  At his 9 month visit Carson weighs 15lbs 10oz (1% on typical curve, 25-50% for T21) and is 26.3" long (5% on typical curve, 25% for T21).   He is doing great with fine motor and is only a little behind on gross motor.  GO Carson!


On Wednesday we went to PT and had a substitute for his normal PT (who is amazng).  It was a retired PT who now just subs when needed.  She went on and on about how well he is doing and how far ahead of the developmental chart for Down's he is.  She kept saying "you do realize how well he is doing, don't you?".  To be honest I think he is doing well, but no I really don't realize it all the time.  His regular PT is very positive, but other than her I always get told the negative things about the delays and how long it will take him to do stuff from doctors.  I hate labels.  He will do it when he does it.  It is so great to hear someone applaud you, Carson, the regular PT, and everyone for working so hard. When you have a child with special needs, or any child for that matter, you constantly question yourself (am I doing enough, too much, what therapies should I have him in, etc....).  She really praised everything we were doing and I appreciated her for realizing that and making me feel like I was doing something right. 


Kaylee turned 4 on May 12th.  We celebrated with a crazy weekend.  Both sets of grandparents were in town along with her Aunt Shanna.  She had a park playdate on Friday morning so we could celebrate with the boys, then we had her princess party on her actual birthday.  Both were so much fun.  Ha, minus the rain at the park one, but the kids didn't mind.  Kaylee got a new bike for her birthday and it is so fun to see her ride her big girl bike.  Then she had her mini Olympics for gymnastics that afternoon.  It was fun to see her show off what she has been learning the last few months.  The weekend ended with a fun Mother's Day celebration.  Kaylee continues to be such a sweet, smart, active little girl.  She is also very strong willed.  Ha, one day this will be a good thing.  Kaylee is really starting to write and read well.  This makes a teacher Mommy very happy.  Her last day of preschool was today and she will be in pre-K next year.  I can not believe it.   It is so neat to see how she is going from being a toddler to a little girl.  Sometimes I want to freeze her at this cute age.

I am truly am blessed with such a wonderful family and great friends.  I can't thank all of you enough for the prayers and support on the good and bad days. 





Wednesday, April 25, 2012

Not Everyday is a Good Day and That is OK.

So I have been waiting to update the blog until I felt a little more positive, until I wasn't having a hard day.Well I have been having several hard days recently.I decided finally that it was silly to hide it.The reality is that every day isn't easy, actually I have lots of ups and downs.I figure if one reason I do this blog is to let other people join our journey, I might as well be honest.Last week was a struggle with both kids.Kaylee has been having some behavior issues at school.As a parent you constantly blame yourself.Why is she doing this?Is she not getting enough attention?I do everything in my power to not always make things about Carson. We try so hard to do special things with and for Kaylee.We try to make his appointments while she is at school (which scares me this summer since she will be out for school).Ha, maybe we give her too much attention.Every parent struggles with giving their kids exactly what they need and dividing up your attention amongst them.

We also had Carson's first ENT appointment last week.I can't tell you how much I dread doctors’appointments.It is just a reminder of the fact that, yes, my son has Down's Syndrome, and all the health issues that come with it.I leave them depressed and feeling like we will never get a clean bill of health.Carson's hearing test came back a little low.The doctor is not worried about it because it isn't a very accurate test and he seems to hear.The more accurate one would require putting him under and we don't want to do that with his heart.Having said that, the doctor is not worried...Mom is.I know he can hear and never worried about it.Now I am constantly saying his name across the room in whispers to see if he can hear.Sometimes I wonder if going to the doctor just makes things worse.I know the whole point is to get a baseline and be preventive, but it is hard to hear that your kid has anything wrong with them. Actually I would love a doctor to tell me something positive about my child.In all honestly he is doing really well and has been a healthy baby especially with all he has going on.

Kaylee came with me to Carson's therapy today due to them having to reschedule.It is so hard to have to explain to Kaylee why the girl in the other room is 12 and can't talk, needs help climbing stairs, and help doing basic things.I tried to explain to her that God makes everyone different and she is so blessed to be able to use her words and to have strong muscles.She looked at me and asked, "Does that girl have Down Syndrome like my brother?"I wanted to bust out crying.At such a young age she gets so much.I don't know exactly what the little girl had, but I do know that Kaylee gets it.My hope is that this makes her a better person. A more tolerant person, a more understanding person, and someone who realizes how blessed she is.This truly is my hope for everyone.I believe that Carson was put on this Earth to show us true unconditional love, to remind us of how fortunate we are to be able to do things we take for granted.I love my moments I have looking at my family and feeling so lucky (not thinking about doctors, the future, health stuff), because I truly am very blessed.

Tuesday, April 10, 2012

8 months

Wow!!  I can't believe our little man is 8 months already.  The months are just flying by which has been really hard on me.  I can't tell you how much I want to freeze him right where he is.  Before his heart surgery, before he has to struggle, before life gets hard. 

Well let's see since the last post Carson continues to amaze us.  He started sitting up by himself right before his 7 month b-day.  He had his 6 month evaluations from ECI and met all of his goals so we got to add some new ones.  His goals now include crawling (or being mobile someway) and standing up holding on to something.  He is doing great moving in a circle one the floor and tries to inch worm but doesn't get anywhere.  He also stood holding on to the sand table while playing with his sister.  Carson is getting really good at manipulating a toy to make it work.  He is doing so well in understanding cause and effect.  Carson is such a determined little boy and works so hard to do things we take for granted. 

Carson was baptized on February 12th.  All of our immediate family was able to attend and we were lucky enough to have my uncle, aunt, and cousin bring my grandma, Carson's great grandma.  It was a really special event and we are so blessed to have such an amazing family and a great church family.

I have been having a really hard time lately with everything.  I think it is because the doctors appointments come in waves and he is about to have another wave of urologist, cardiologist, ENT, optometrist, etc.  We also have been filling out and reading about everything we possible can for financial help to pay for some of the therapies.  It is so hard to pick and chose what you think will be enough for him.  I think I am also dreading his heart surgery and the closer it gets the harder it is.  It is just so hard to look at my baby that looks perfectly healthy to me and put him through something so hard.  I know he has to have it, but it doesn't make it any easier and I am grateful he isn't showing signs of heart failure and hopefully will never have to.

On a good note we went to the urologist last week and for the first time his kidney is not dilated....Praise GOD!!  It looks like the surgery is working.

This past weekend we had a wonderful Easter with all my family.  We also attended my cousins wedding and Kaylee was honored to serve as the flower girl.  Pictures to come of everything.  The weekend before we got to celebrate Easter with Charles' family and the girl cousins went to see Mary Poppins with Gram and Gramps while Aunt Kay and Uncle Kris watched the boys. 

Thanks so much for all the prayers and support you all have given our family.  Carson truly is a blessing and while we have some days that are a struggle for us to get through, his smile keeps us going.

**Top two pictures by Diana Busch Photography**