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 :)