Tuesday, November 20, 2012

Our Thanksgiving this year involved lots of travel with seeing many friends and family along the way.  Brad had to work in New Orleans the Monday before Thanksgiving so we all piled into our car and drove down to New Orleans with him.   We stayed at my cousin Amanda's house so Cain and Callie could play with their cousins while Brad worked.


Callie had so much fun playing with Seth and I would give anything to know what was going through both of their brains in the following pictures.  








It's not often that you can enjoy the weather outside in New Orleans but the temperature was great while we were there so the kids ended up having a blast playing together outside.  






And one of the things I was the most excited about with our visit to Amanda's house was I was finally able to meet HENRY!!  Isn't he precious?!  One more cousin for Cain and Callie to have fun playing with!



Friday, November 16, 2012

Dancing

Caught these two dancing!  Melt my heart...




Thursday, November 15, 2012

Thanksgiving lunch at school

Today I was able to go to Cain's school for Thanksgiving lunch.  Callie went with me and we were able to sit in a room just outside the main cafeteria that was set up for students and their families.  We shared a table with another one of Cain's classmates, Austin, and his mom.  It was so cute watching Cain interact with his friend from class and he seemed really happy to have us at school eating lunch with him.

It was so cute seeing Cain sit at the big cafeteria table.  He didn't  know I was there yet. 
A look of confusion wondering why Momma and Callie were at his lunch. 


Comparing smiley faces on their hands.  The goal is to come home each day with two smiley faces drawn on his hands. As long as he listens and has no time outs at school he gets two smiley faces from his teacher.   
I packed Cain's normal lunch because I knew he wouldn't touch any of the Thanksgiving food but Callie loved it all!   Although that's no surprise.  She will give anything a try.


Tuesday, November 13, 2012

We are still so excited about how great Cain seems to feel since his heart cath.  It still makes me a little sad now realizing how bad he must have felt (or was starting to feel) before his cath.  Honestly before the cath he had been whining more than normal but I just thought it was just a stage he was in with not being able to communicate well with us.  But he has been a new kid since his fenestration closure and stent that was placed.  I'm assuming widening his pulmonary artery with the stent has made him feel much better.  We have had much less whining and as crazy as this sounds I swear he is even talking more and his speech has improved since the cath.  I'm assuming he just feels better overall which makes me very happy!

There were a few funny things from Cain's hospital stay that I don't ever want to forget.  Sometimes I think it's the laughter that gets us through hard times and Cain certainly made us laugh with a few things he said while in the hospital.

The first thing that we thought was hilarious (and possibly a little sad) was as he was waking a little after his cath the first thing he said to us was "not again. Awe man".  I laugh just typing this.  We had never heard him say that so it took us by surprise and had me, Brad, and our nurse all laughing.  He woke up enough to say that and fell right back to sleep.

Another thing was right before Cain was discharged the nurse was removing Cain's IV from his hand And he was saying "ouch, ouch" in the sweetest little voice and then looked at us and the nurse and said "I'm sorry" which sounds more like "sar-wee" and then he told us "I okay".

And the day after Cain left the hospital I had to remove Cain's pressure bandage from his cath site.  The bandage is a big sticky clear piece of tape.  Cain was not thrilled about me needing to remove this and I can't say I blame him.  At first he threw a fit but I explained to him he could lay still and let me remove it or otherwise we would have to go back to the dr and let them remove it. I guess he didn't  like the idea of having to go back to the dr so he laid very still while my mom held his arms, I sat on his legs and removed the bandage as gently as I could.  Once it was removed he stood up, looked towards Callie and said "CALLIE'S TURN". We had all been sweating removing the bandage so hearing him say that certainly lightened the mood and made us laugh.


Thursday, November 8, 2012

Cain's cath

We are home!!!  We got home Tuesday morning from a cath that I have known would take place since September 2008.  Since our first conversation with Cain's heart surgeon we always knew he would require 3 open heart surgeries and a heart cath at the end to complete his Fontan.  It is an odd but awesome feeling knowing we have all of those procedures behind us.  Cain's heart will never be completely fixed and he will always live with just half a heart but knowing Cain has undergone and survived all of these procedures that I have dreaded since September 22, 2008 is a feeling that can't be explained in words.

For a while now we had expected Cain's heart cath and fenestration closure to take place next spring.  All of that changed at his last cardiologist appointment when we realized his oxygen sat's were declining and his blood pressure was a little high.  I'm so thankful his appointment fell when it did and his cardiologist decided to go ahead and schedule his cath.  Cain tolerated the cath very well and Cain's pressures looked good.  Dr. Janssen had been concerned that Cain's pulmonary artery could be narrowing and causing his blood pressure to increase.  During the cath, the narrowing was confirmed with a section measuring only 4mm, which is only half the size of what the artery measured before and after the narrowing.  A stent was placed to widen the narrowed area and to support it from narrowing any further.  Unfortunately, the stent won't grow with Cain so he will need another stent placed in approximately 5 years.

Picture before the stent
Picture after the stent
They were also able to close the fenestration (hole) during this cath.  We were able to see sample devices to see what was used in Cain's heart.  It was so crazy to see how they actually "plug" the fenestration.


The device on the left is what they used to close the fenestration and the device on the right is the stent. Both of these devices are stretched out into a tiny tube and then threaded through the catheter.  From what we learned from Cain's cardiologist, Cain's cath took a little longer than expected (around 4 hours) because the stent that was used to widen Cain's pulmonary artery did not go exactly where they wanted it.  The stent had to come partially out of its sheath and they had to use a snare catheter to get it into the proper positioning.  I'm so thankful all of this turned out okay and that Cain's cardiologist was eventually able to get the stent exactly where he wanted it.  

Cain's new stent implant card that I am to carry with me at all times.  
Cain's oxygen saturation levels stayed around 94 after Cain's fenestration closure.  We have never seen Cain's oxygen so high!  Once tissue grows over the patch and completely seals off the fenestration, he will have even higher oxygen levels.  I asked the cardiologist if he thought Cain would feel better immediately and he explained it wasn't so much that Cain would feel better but we should certainly see a difference in Cain's stamina and he shouldn't get as out of breath while he is playing and running.  Oh how I can't wait for that!  It always broke my heart to hear him breathing so hard while he was playing.  

For the most part, Cain had a great recovery.  Throughout the afternoon of Cain's cath, we really noticed him getting very swollen.  We hated seeing him so puffy but thankfully he started having good urine output in the evening and the swelling looked much better by the next morning.  Really the only problem we had was getting Cain to take his meds but that was thankfully back to normal when I gave him his meds at home.  Speaking of meds, nothing changed with his meds after this cath so we went right back to twice a day enalapril, once a day lasix and once a day baby aspirin.  



I still can't believe Cain has been through 3 open heart surgeries and 3 open heart caths.  At one point Brad looked at me in the hospital and said, "momma, we sure have been through a lot".  He is certainly correct about that but I wouldn't change it for the world unless that meant it could be me going through all of this instead of Cain.  Words cannot express how blessed I feel about how far Cain has come.  Thank you for all of your prayers and a HUGE thank you to my parents who dropped everything and traveled to Nashville to help us with Callie.  We are so grateful for everyone's support.  And I don't just mean the support we have received over the last week.  It is the love, support and most importantly prayers over the last 4 years that have helped us get from this....


to this.....




Monday, November 5, 2012

In recovery

Our sweet boy is in recovery and resting well. They were able to go ahead with the fenestration closure and also ended up putting a stent in his pulmonary artery. I'll write a longer post about the cath later today. Right now we are just trying to keep him comfortable and keep his leg straight as he wakes up. And giving him water as he asks for it. Overall the cath went very well. Now I'm ready to get back to staring at this sweet face.

Just waiting...

Since I don't have anything to do but wait for an update on Cain, I thought now may be a good time to do an update.

We arrived at the hospital this morning at 6am and Cain was in a sweet and happy mood.  His newest thing is to ask "what's that?" to everything all day long.  So all the way to the hospital all we heard was "What's that?"  "What's that?" in the sweetest little voice.  While we waited to be called back Cain had fun "playing" video games.  And when we got back to the surgery holding area Cain did great and let the nurse take his vitals and let the anesthesiologist and the cardiologist listen to his chest.  The only thing he did not enjoy was having to take his Versed (happy juice).  He does great at taking his daily meds for me but when I introduce a new med to him we always have problems.  He usually ends up sick and we almost had that problem today but after a little struggle we were able to get him to take the Versed and keep it down.






I had a very hard day yesterday.  I was much more anxious than I expected to be.  One minute I would be fine and the next minute I would be crying.  It actually made me wonder how in the world I made it through Cain's heart surgeries considering this is just a cath and not an open heart surgery.  I told Brad I was shocked at how anxious I was about this cath and didn't remember being that anxious at previous cath's.  Brad just laughed and said "trust me you were just as anxious with those too." Ha!  I guess it has just been awhile since Cain had a procedure so the "feelings" were new again and took me by surprise.

Thankfully, I was much better this morning and only cried when they took Cain away for his cath.  No matter how many times I see that sight it is something I'll just never get used to.




The cath started around 8:00 and so far we have received 2 phone calls with updates.  The first call was letting us know they had temporarily closed the fenestration and were in a waiting period to watch and see how Cain's body reacted to the fenestration closure.  The 2nd call was to tell us that they were putting a stent in Cain's pulmonary artery and would proceed with the closure after the stent was in place.  He has been back for about 3 hours now so we anticipate the cath should be finished soon.  Looking forward to seeing my sweet boy again very soon.

Friday, November 2, 2012

Cain's upcoming cath...

Week before last Cain had his 6 month cardiology appointment.  He is still at a stage where he is seen by his cardiologist every 6 months.  Eventually he should only have to been seen once a year but for now it's still twice a year.  And to be honest, I'm okay with that.  I was so proud of Cain during his appointment.  He did great throughout height, weight, blood pressure and oxygen checks and laid perfectly still for his EKG.  He even pulled off all the sticky electrodes himself when the EKG was finished and handed them to the nurse.



Our last few appointments have ended with Cain's cardiologist saying "Everything looks great.  See you in 6 months."  However, this appointment didn't go quite as well.  Cain's blood pressure was slightly high and apparently had been at his appointment 6 months ago and his oxygen saturations had dropped from 88 range to 83.  They didn't worry about his blood pressure at the appointment 6 months ago because he had been a little fussy while they took it so they thought that could have been the cause.    I was shocked to see that his oxygen saturations were only at 83.  We tried several different probes on different fingers and even let him walk down the hall and back to see if his oxygen changed but it remained at 81-83 range.  I've noticed Cain getting a little more out of breath when playing with friends but even with him breathing hard nothing really stops him.  And Cain's coloring has been great so I was surprised about the low oxygen saturations.  Since Cain's oxygen had dropped and his blood pressure was slightly high on top of the fact that we have already met deductible.  Cain's cardiologist suggested we move forward with Cain's fenestration closure.

Cain is now scheduled to have a heart cath this Monday, November 5th.  We have to be at the hospital at 6am that morning and the heart cath should be a very simple procedure compared to everything else he has been through.  Cain's fenestration closure had always been planned to take place next spring but since his sats have dropped and his blood pressure is up they will go ahead with attempting the fenestration closure while a diagnostic cath is done on Monday.  I know many of you are wondering what I even mean by fenestration closure.  So, a fenestration is a hole that was intentionally left in Cain's heart after the Fontan procedure (which was his last surgery).  The new circulation after the Fontan created pressure, in which Cain's little heart and body wouldn't have been quite ready for.  So to relieve some of that pressure, Dr. Bichell (Cain's surgeon) left the fenestration (hole) to release some of that pressure with plans to close it later when his body was ready.  The fenestration closure will increase his oxygen saturations but they still shouldn't have been dropping like it has since his last check up.  Especially with his new physiology.  During the cath they should be able to determine what is causing his sats to drop and his blood pressure to increase.  Cain's cardiologist has a few guesses and those would either be collateral vessels that have formed that need to be coiled off or his Pulmonary Artery may be narrowing again and need ballooning to make it wider again.  Those are both things that could be taken care of during this cath, thank goodness.

I wasn't nervous going into this checkup but obviously left a little down.  I know it will be a simple procedure and hopefully only an overnight stay in the hospital but I hate to see Cain have to go through anything else.  Especially now that he is older and understands more.  I've kept him out of school since last week.   I had decided after talking to his dr's and nurses that it would be best to keep him out the entire week before the cath which we have done.  But, he ended up with an ear infection and a tiny cold last week so we kept him out most of last week too and have been giving him a strong dose of antibiotics to get him well and keep him well.  We had a recheck this week to make sure his ear infection was gone and thankfully it was so we can move forward with the cath on Monday as long as he stays well with no fevers, ear infection, colds, etc over the weekend.

If all goes well and they are able to close his fenestration (hole) on Monday, this would be the last PLANNED procedure that he needs.  I have known since September of 2008 that he would need 3 open heart surgeries and the Fenestration Closure.  As nervous as I am about Monday's cath, it is also a wonderful feeling to know we have come this far and this could be his last procedure for awhile.

We have had so many people ask about helping us with Callie next week and I can't thank each of you enough.  Thankfully, my parents are driving up on Sunday and will be here Monday and Tuesday to help us with her.



Thursday, November 1, 2012

Halloween 2012

Halloween turned out to be so much fun this year.  Both Cain and Callie were really excited to go trick or treating and it was so much fun hearing Cain say "Happy Halloween" and "Trick or Treat" this year.

While Callie took a long nap to get good and rested for trick or treating, Cain and I had fun painting and decorating pumpkins.



Cain has been really into Spiderman for the last month so I let him wear his Spiderman costume that he wears every day.  I don't think I could have gotten any other costume on him even if I wanted to.  And Callie has just started talking about Cinderella a lot so we bought her a pretty little Cinderella dress.  I wouldn't doubt it if both Cain and Callie are eating Thanksgiving lunch and unwrapping Christmas presents in their costumes.  That is all they want to wear now from the time they get up until they go to bed.




Callie got so excited to go knock on her first door (which was just our neighbors house) which was so cute.


After trick or treating at our neighbors house, we walked over to our friends house for their annual hayride around the neighborhood.  It works out perfect because all of our kids are so little and we take them around to only about 5-6 house and then head back.  The kids love it and it's not too much.












What made Halloween even more special is Brad had been out of town for work but flew in just to be here to see his Cain and Callie in their costumes and go trick or treating with them.  They were so excited to see him and it meant so much to us that he did that.