Wednesday, June 29, 2011

Tuesday, June 21, 2011

Father's Day

"Any man can be a Father but it takes someone special to be a dad"..... I've always loved this quote and feel it is very true.

Cain and Callie are so lucky to have Brad as their Dad and I'm lucky to have such a wonderful dad too.  I'm a daddy's girl and always will be and I'm pretty such Callie will feel the exact same about Brad.

We had a nice relaxing day at home this Father's Day.  We let Brad sleep in while we ran to the grocery store to get food for a nice big breakfast and lunch.

I tried to get a picture of Brad with his two kiddo's but this was the best I could get.  Oh well, we will try for a new picture next year.

Callie crying in this picture makes me laugh but what I really thought was funny was Brad and Cain's expression.  I normally don't think Brad and Cain look alike but their cute little mouths look exactly the same in the picture and so do their cute little dimple and eyes.

Thankfully my breakfast turned out good but my attempt to cook roast for lunch/dinner failed.  For some reason it took forever to get tender this time.  Thankfully it was good on Monday night but we decided we were too hungry to wait any longer on Sunday afternoon so we went out for dinner.

I'm still laughing about Brad's Father's Day dinner.  Brad had been craving crab legs so we went out to get him some at a local restaurant.  When we got to there you could smell ribs from the car and I could tell Brad was going to have a hard time deciding between crab legs and ribs.  Thankfully it was his lucky day (and Father's Day) because they had a meal called 'Crab and Slab' on the menu.  What a meal!

It turned out to be a great day!  The only thing that could have made it even better would have been to be able to spend time with my Dad and Granddad too.

And by the way, I'm still not sure Brad has recovered from that big of a meal.

Wednesday, June 15, 2011

Lots of firsts...

Look who can sit on her own now...

And I think she is pretty proud of herself too!

Not only did she decide she could sit on her own this weekend she also decided she could stand on her own too. (with support of course)

My baby girl is getting SO big!

And just in time for Father's Day this weekend, Callie said her very first word today....DADA!!!  Here is a clip of what I've heard her say all day.

Monday, June 13, 2011

Follow-up appointments

Cain has been seen by 3 different Dr's for follow-up appointments since being discharged from the hospital.  The first appointment was with his pediatrician the day after discharge.  He needed to be seen by his pediatrician to get a baseline of where he was after surgery.  He was weighed and then we discussed surgery and any concerns with our pediatrician.  Cain weighed 28lbs at his appointment so he lost a about 2lbs during his hospital stay.

Last week he had an appointment with both his cardiologist and his surgeon.

He had xrays on Wednesday before his appointment with his cardiologist.  Cain was not happy at all about having xrays taken and he put up a pretty good fight.  After the xrays we went upstairs and had his vitals taken and then met with the cardiologist.  Cain's sats were in the 85-86 range.  Honestly I was hoping they would be a little higher since this is about the same as where they were before surgery.  I think his cardiologist could tell I hoped they would be higher and he explained they should increase over the next weeks/months as his lungs improve.  They should also go up a little more after his fenestration closure next year.

His cardiologist discontinued two of Cain's medicines so he now only has to take 6 syringes of medicine a day, a daily aspirin, and pain med as needed (which he is still needed about twice a day).  The best part of this appointment was he told us he didn't need to see Cain again until October unless we noticed any changes in Cain's breathing.

Trying to distract Cain while he was having his BP taken by letting him watch Toy Story but that wasn't working too well.
On Friday, Cain had a follow-up appointment with his surgeon.  This was a very easy appointment since vitals and xrays were taken on Wednesday.  They took his BP at this appointment and checked to make sure his incisions were healing properly.  Once again he received an A+ report which made us very happy!

Cain has really gotten into wanting to act just like his Daddy lately.
Am I cool or what?

Thursday, June 9, 2011

Now that we are home...

I am so sorry it has taken me awhile to update our blog on how Cain is doing since we have been home.  Honestly, our first days home were VERY exhausting and now I've been enjoying visiting at night with Brad's step-sister, Jennifer, who is still in town helping us out.  Brad went back to work last Thursday, after taking off for Cain's surgery, so having Jennifer here has been a huge relief.

Cain was sent home with way more medicine than I ever expected.

Last week was really hard on all of us.  Cain absolutely hated taking his medicine and would fight us every time he saw a syringe coming his way.  I tried everything I could to get medicine down...mixing it with chocolate syrup, having him drink it out of a straw, and even mixing it with apple juice and having him drink it through one of Callie's bottles.  It was exhausting!  Especially considering he is taking 14 syringes of medicine a day and two crushed pills.  There have been MANY battles!

Cain was busy watching 'Toy Story' Sunday evening so I decided to give him medicine while he was distracted by his movie.  Thankfully it worked like a charm and he took all his medicine without putting up a fight. As you can imagine, he has watched 'Toy Story' several times since then.  It's been the only way I can get him to take all of his medicine.  He is finally doing better at taking the meds he has taken all of his life (baby aspirin, Enalapril, and Lasix) but still tries to put up a fight with his new medicines (Spironolactone, Hydrochlorothiazide, Potassium, Oxycodone).  Thankfully the fights aren't as bad as long as 'Toy Story' is playing.

Another challenge has been keeping Cain's hands away from his scars.  We were told the incision area would probably itch as it was healing.  Either it itches or is sore...or both.  While Cain was taking a nap on Thursday (our first full day home) he pulled off all the Dermabond (a liquid skin adhesion) covering his incision and all the steri-strips (adhesive strip) off his chest tube sites.  I checked on him no less than 5 times during his nap yet somehow he quickly pulled everything off of his chest without me catching him doing it.  I was worried about one of his chest tubes sites as it looked like it still needed to be closed so it could heal properly.  I called our surgeon's NP and she told me how to clean the area and how to reapply a new steri-strip.

I tried figuring out any and every way I could to keep Cain from scratching his chest and the incision.  I  finally came up with buying him onesie's to wear under his clothes.  I didn't even know if they made onesie's for a 2 year old but thankfully they do.  I must admit I thought it was pretty cute seeing him in a onesie again.

Overall Cain is doing great.  It's amazing to me how resilient kids can be.  Just by looking at him you would never have a clue that he had heart surgery two weeks ago.  It's truly amazing.

Thankfully he doesn't seem to have nightmares at night.  Not yet anyway!  At first he was waking every morning around 5:30AM but I think that was because he was in pain and needing pain medicine.  The last 2 or 3 days he has slept peacefully until around 7AM.

Speaking of sleep, Cain fell asleep two nights this week before I could get him to bed.  One of the nights I was putting Callie to bed and walked out to find Cain sleeping in his highchair.

Then the next night, Cain was throwing the biggest temper tantrum about changing into his pajama's so I walked away to ignore the temper tantrum he was throwing.  Once I realized the temper tantrum was over I walked in to find him sleeping on his floor.

Overall, we are all doing very good.  There have been a few times that I've been way more than thankful to have help still in town.  On most days Cain wakes up from his afternoon nap really grumpy.  It's about the same time that his next dose of pain med is due.  He will be kicking and screaming and the only thing that seems to calm him down his holding him and trying to soothe him.  I've been so thankful Jennifer has been here to help with Callie when she is crying at the same time as I'm trying to soothe Cain and get him his next dose of pain meds.  About 15 minutes after he takes his pain med he is back to his normal self.  I'm starting to wonder if he is getting stiff and sore as he sleeps and wakes up uncomfortable.

Sunday, June 5, 2011

Discharge Day

I still can't believe we are home already.  HOME!!!!  Home from Cain's 3rd open heart surgery.  This is a day that I've known about and prayed for since I was 20 weeks pregnant.  Driving home from the hospital was truly an overwhelming experience.

During rounds on Wednesday we learned that Cain would be discharged that day.  We were thrilled.  Cain was completely over being in the hospital and having people constantly touching him.  He was to a point where he would kick and thrash about any time someone came near him.  

Rounds took place around 9AM and then the rest of the morning was spent doing paperwork and other things necessary for Cain to be discharged.  We reviewed CPR, picked up meds from the pharmacy, etc.  

The thought that I would ever need to do CPR on my son scares me to death.  Hopefully that will never be needed but it's certainly better to be prepared.  I still remember sitting in my first CPR class before we took Cain home from the hospital for the very first time.  I remember sitting in a daze with other parents all learning CPR thinking I cannot believe this is happening.  At that time I was so scared to take Cain home from the hospital.  A lot has changed since then and thankfully reviewing CPR this time wasn't as scary.  

It was certainly bittersweet as we were leaving the hospital.  Vanderbilt Children's has been our "home away from home" several times now.  Everyone has been wonderful to Cain and to our family.  I know this won't be Cain's last time at this hospital (he'll most likely be back next year to close his fenestration hole) but leaving after this 3rd open heart surgery was very emotional.  I've known since September 22, 2008 that Cain would need 3 surgeries to survive.  Before Cain was born we were told how risky these surgeries would be and that 20% of the babies don't make it through all 3 surgeries.  It's on overwhelming feeling for Cain to be Post-Fontan. 

Cain still has a long road ahead of him.  He has been discharged from the hospital but he is still in a recovery stage.  We were sent home with many meds and we can't pick Cain up under his arms for 6 weeks.  

I was really surprised at how much I cried as we drove home.  I suppose the magnitude of the past several years hit me all at once.  

At the time of discharge it had been 10 days since Cain walked.  When we put him down to walk in the house his little legs were so wobbly.  We didn't realize he would be so weak.  He has always been a strong-willed little boy and he was determined to walk around and not let us carry him.  

It broke my heart to see his little legs not work and have to watch him keep falling down.  To be honest I was more than worried for a little while but as the evening went on he started walking better.  

I know all the pictures look like Cain was in a great mood this day and thrilled to be coming home.  Honestly, he was in a terrible mood all day and did more kicking and crying than anything.  I'm honestly surprised we have a few pictures with smiles in them.  It was very stressful once we got home not knowing what to do to pacify Cain.  

We finally decided that maybe Cain was just in a lot of pain and the only way he knew how to express it to us was by kicking, hitting and screaming.  We decided to make sure we stayed on schedule with his pain meds (Oxycodone) and give it to him every 4 hours.  Once we started doing this Cain completely became a different child.  He is much more like himself.  I'm glad we finally decided to stay on top of his pain meds and wished I had suggested that more when he was in the hospital.  

I wish this surgery had been the final surgery that would fix Cain's heart.  Sadly, his heart will never be fixed and he will more than likely need "tune-ups" though life.  The good feeling though is that we have NO SURGERIES lingering in our head.  We can start living our lives as "normal" as possible.  We are so proud of our little survivor and how far he was come.  

Wednesday, June 1, 2011

Day 10 Update

I can't believe I'm already typing these words but.....


We learned during rounds this morning that Cain would be discharged today.  They felt he was doing good enough to go home and we can wean his diuretics from home.  We are to take him to his pediatrician tomorrow and he has appointments next week with cardiology.  So, he will still be watched over the next few weeks as he recovers.

I can not believe he had open heart surgery 10 days ago and we are already home.  Absolutely Amazing!

We had a rough afternoon after being home.  The picture of Cain in this post is very deceiving because he actually didn't smile too much today and spent most of the day kicking and screaming.  By the end of the night we finally realized he calmed down after his dose of Oxycodone.  We think he was in more pain than we realized and just didn't know how to express it which ended in him kicking and thrashing about.  Hopefully we will do a better job of controlling the pain tomorrow.

The house is now quite and everyone is peacefully sleeping under the same roof tonight.  I know Cain will enjoy getting a full nights sleep without anyone coming in to check his vitals throughout the night or having xrays at 5AM.

I'll post more about our discharge day tomorrow but for now I'm off to get some rest with the rest of my family.