Good News Friday

Cole and I made our way downtown again to Sanger Heart & Vascular Institute on Friday the 15th. It was a weird feeling to travel 77 to 277 to the exit you would get off to go to CMC Main or Levine and not begoing to Levine's this time, but it was such a great reminder that we have come a long way in a short time and our sweet blonde headed boy was in his carseat with me and not in the hospital for surgery or visiting or living at the hospital with Cole.

When we went to check in I didn't know if Cole would freak out just seeing doctors and nurses after the way he felt a couple of weeks ago, but he was as calm as could be and was showing off his cool Buzz Lightyear shirt to the staff! Auntie K found one that looks like the top of the Buzz costume so Cole has barely let me take it off to wash it.

So he hopped right on the scale with no sudden outbursts of high pitch screaming. He even allowed them to measure his height.

We moved on to our little room to have oxygen levels checked and blood pressure checked before Dr. Bensky, Cole's cardiologist, came in.

Even on a good day with no surgeries just having been done does Cole ever let them do oxygen levels and blood pressure without protesting.
He sat there quiet and even tried to give them a hand and assist them with it all. He was so cooperative, such a little gentleman:)

Dr. Bensky has always been one of Cole's favorite doctors, but lately no one in the medical field could be trusted from Cole's point of view, but Cole was quiet and still while they checked him.

Dr. Bensky said "everything sounds good and strong." Sometimes these single ventrical heart babies can have weak valves. He said Cole looks good and is healing well! We, along with you all have prayed since before Cole was born that even though he was given this special heart that it would be strong and healthy andthat he would be healthy and strong. We used to be confused because we assumed heart defects automatically meant a weak heart, but the best way to describe Cole's heart is, his is strong it's just the plumbing is very screwed up and missing some parts.

We even got to get rid of one whole medicine all together, Aldactone. We only have to take one tablet of baby aspirin a day now and no more 3 times a day for the Lasix, just two, and twice a day for enalapril. The Lasix won't be forever either, but is a must for a while after any surgery.

I felt like I walked out of there walking on air. I was so happy for Cole and for us as a family to get such good news!

Oh yeah, and Cole's oxygen level was 90!......90! We have never seen those numbers before! It's so good to see Cole being active and not running out of air and having to stop what he's doing to recover .

We are in the home stretch of recovery now! The breast bone is healing up and Cole's immune system will be getting stronger now that it's not fighting so hard to repair itself.

We are really looking forward to this year during the holidays not having to be quarantined from October to some time between April and May for the first time in almost 3 years! It means Ava doesn't have to be pulled out of everything either! It means freedom!

It is an absolute miracle already, and one of our biggest prayers answered, because none of us has even had a cold! That all by itself is a miracle because you know these little ones are petri dishes for all kinds of colds and viruses!

Thank you to everyone who is keeping up with us still! I apologize getting some of these updates to you all so late. Your support deserves better.

Our next visit is October 27th to follow up with Dr. Watts, Cole's surgeon and then we don't go back until December and then they will do a heart eco to see how flow is doing and just check out Cole's special heart to make sure all is working well and strong!

We'll get more pictures up soon!

Our Friend Chuck

So this is Chuck and he was sent to the hospital by a family that Cole loves even more than us or Buzz Lightyear or dum dum lollipops. Chuck sat with Cole and I in the morning when I would have my complimentary waiting room coffee and Cole would have his complimentary apple juice, milk and Fruit Loops from the Family Snack Room.
He sat with us as Cole went through one of the hardest times in his life, but thank God we had and have all of you for our real support! Chuck is nice, but nothing compares to all of you!
Chuck is a laid back guy who hung out in his terry cloth hooded bath towel and matching terry cloth underwear. Chuck was the kind of guy who was more of a listener and not a talker. At times Chuck could get a little annoying because of the creepy smile he constantly had plastered on his face no matter what the situation. It was a little disturbing after a while because it gave him a little Crazy Eyed Clay look, but we kept Chuck around and he came home with us to roost with the other stuffed animals. He's been hanging out in Cole's room getting wrestled with by our lovely tazmanian devil Cole Griffin.

I wanted to let everyone know that Cole has been doing phenominal at home with his recovery. We were told he would self limit. Cole does not possess self limiting. We try to be a voice of reason to him here and there when it's so crazy to us that he is doing so well this early! Thank you Lord, but it's a little nerve wracking. Cole runs around the house chasing Ava with Lila now in Cole's old position of being the follower, or Cole takes running dives into the couch. We stand aside cringing, waiting for something to hurt and make him cry. Every now and then he finds an action that does hurt a little but does not stop him for long.
His latest endeavor is picking the scabs and stitches of the three chest tube sights. That's our boy:)

We can't wait to get the final all clear knowing Cole is mended 100% but in the meantime he is happy and laughing and being a boy!

Here is Cole about to get a blue dum dum lollipop. This is pretty much how Cole is about everything in life! He is my reminder to look for the good in life and try living life like Cole. Everything in life is big and exciting no matter what it is, even as small as getting a dum dum. If Cole can still have that attitude after everything he has gone through the past 2 1/2 years than we should definitely be able to try living life the same way!

Thoughts of a Two Year Old Cole In Hospital

September 22, 2010 seems like it was 6 months ago. There were so many things Cole said in his sweet two year old voice that we wanted to remember because it was his perspective on his time in the hospital.


Someone was visiting and asked where Ava and "Yieya" were.
"I can't find them"

About his chest tubes as he held them up to me by the bulbs.
"Dis right dare hoowt me"

Cole said this to a student nurse that had come in to his room two days in a row.
"Dat da monsta right dare." and pointed at her. Thankfully her back was to us in the room.

After another sleepless night on into 2, 3, 4 a.m. of trying to calm him down from someone coming in to do vitals or drain chest tube bulbs or draw blood, he didn't even want me to be at his bedside to try comforting him and he said "You go over dare mom," "Go Away." and pointed to my sleeping area.

There were nights I would lay on my side balanced on the side rail that had been lowered and a piece of his mattress because it was the only way he would calm down and other times he wanted me to go home.

Whenever Cole needed help throughout the night after he had gotten stuck in a certain position because he couldn't use his arms to push up or his chest tubes had gotten wound around him and pulled at the stitches connected to his skin "Help Mom."


I'm sure I will think of more as time goes by. It's so hard to pull thoughts together right now.

No More Worms

Yesterday Cole and I got up at 5:00 a.m. and headed to Levine Children's Hospital for our 6:00 a.m. appointment to have the chest tubes taken out.
We went to the 5th floor just like all the other times before a procedure. We went through all the questions the anesthesia team needs to ask to ensure the best result for the patient being put under and coming out of anesthesia.
Cole was screaming at anyone who came in the door. So they brought in a medication called Versed. We now know Cole is a happy drunk. He was laughing to himself and slurring "To Infinity and Mond" which is what Buzz says. I would look at him in my arms and he would just cackle. It was good to see him laugh again:) He had the anethesia team and myself laughing so hard there were tears.
Once the Versed was in full effect I was allowed to walk back and be in the room as they put him under. I then went to the 5th floor waiting room like all the other times but this time not for heart procedures and not for hours of waiting. In about 20 minutes they came and got me and took me to Cole's recovery room. They said they had sewn his holes up and to keep the special bandages on for 48 hours to keep any air from getting in just to be safe. They wanted to watch Cole for a bit after the tubes were removed to see how he came out of anesthesia and also to make sure there were no surprises with respiratory emergencies in case air had gotten in the holes from the chest tubes when they removed them.
We had one more x-ray done before we left and it was even more clear of fluid than the day before. Very comforting to go home with!
I took Cole through Dunkin Donuts drive through to celebrate with a chocolate frosted donut with sprinkles. He loves to eat just the chocolate frosting and sprinkles off and then he's done with the rest of it. I looked back at him just to get a good look at having his breast reduction done:) Nah. but it was so good to see him without these extra body parts that had become a part of him for the past two weeks. When I looked back his face was covered in chocolate and it was a glimpse of our Cole before surgery and it made me smile to myself as we drove home. It was a good feeling to be one more step close to getting Cole recovered!
I scooped Cole out of his carseat at home in our new way of life right now with no lifting Cole under his arms until November. I carried him inside with his chocolate face and set him on the couch to clean his face up. As I am cleaning his face he starts singing just like a happy drunk walking home. It was a little "ohhhhhhhh" note held for a long note and he even added a little vibrato at the end and then some things mumbled in song and then a burst of "ohhhhhhhh" and some more "ohhhhh" and then chuckling to himself. He had Sharon and I in tears from laughing. He had to stay put because when he tried to stand up and walk he would start walking to the side in a lean and there is no falling allowed right now in recovery.
He stayed like this for the rest of the day into evening and then when it started wearing off he became a grouchy mean drunk. They did warn us about this at the hospital with it wearing off.

Having those blasted tubes out has made the rest of recovery seem not so overwhelming. With those being gone I think all of us, Cole included, lifted a weight that was able to give us a new perspective on the rest of recovery. We have 4-5 more weeks of hovering over Cole, but we are on the other side of surgery and recovery is going in the right direction.

We have to do clothing that zips or buttons right now so we don't bring his arms over his head. Here is Cole in his Mickey pj's.(they are his G rated pair of Hugh Hefner red pjs minus the bunnies) and BBQ Lays chips that Auntie K brought by for him yesterday after our trip downtown. As you can see from the expression happy drunk is gone.




I wasn't able to make it back home to take Ava to school and go in for her birthday but Matt and I were both able to go to her school to surprise her and pick her up. Matt went back to work and I took Ava to McDonalds or as Cole calls it Mic and Donalds.

Ava did get what she wanted for her birthday and that was Cole home safe from the hospital.

Say Goodbye To The Chest Tubes.....Only Tomorrow

Cole and I took a ride down to Sanger for x-rays and more blood drawing today. We were so close with the fluid volume being down, but close doesn't get chest tubes pulled.
So tomorrow morning, Cole and I have to be at Levine's at 6:00 am. I know disgusting to be up that early, right?
Actually, not so disgusting because one of the mornings that I was sitting there on my bench in the hospital on the 8th floor in room 2 there was a beautiful sky before the sun rose, I'm not sure why I didn't just say sunrise, but the sun wasn't even close to showing itself, just a rainbow colored sky. So some things are worth being up that early for.

Anyways, they are going to put Cole out, but just a little to remove the tubes so he doesn't feel it or remember. I had heard talk of it being done without anything and this mama was having no part of any more pain than Cole has to have at this point. I'm sure they are really quick and really good at what they do, but if pain can be avoided right now for our little boy I'm choosing that. Who else is going to be his advocate? Now that I think of it, many of you would be:)

I'm not sure how long the process to get Cole out will take, but the removal and stitching up the holes should take about 10-15 minutes. I'm not sure how long we have to hang around after for them to monitor Cole, hopefully we won't be there long and I can come home to wish our Blondie Magoo (Ava Griffin) Happy 5th Birthday and drop Cole off so I can take Ava to school for her birthday.

Worn Out!

Hello all - this is Matt (Cole's daddy) writing.

Not a whole lot to update at the moment. Cole is still at home and is feeling better each day that goes by. However, he still has these 2 nuisances hanging from his chest that seem to be getting in his way no matter how hard we try to keep it from happening. He is curious about them even though they are painful and if he pulls them out, we go back to square one.

The drainage is going in the right direction - lower. We have appointments set for tomorrow and Thursday (at Levine's) and we are hoping that the drainage will get down to where we can take Cole in to have his "boob implants" removed. Keep praying.

As for Laura and I, this is the most taxing thing we have ever had to deal with. Each day seems to be punctuated with a nice, consistent, stout, sharp pain in our temples that on a normal day would seem like a headache....but in this case, that word is not strong enough. I am working every day and trying to function normally, but the fatigue is setting in and I am forgetting things (even MORE than usual) and struggling. However, compared to what mommy is doing every day, I am happy to have an office that I can go to as an "escape" from the unfriendly cage that is our house. Mommy is trying to keep track of Cole while he becomes himself all over again. Imagine taking a baby chimp, letting him drink a Red Bull cocktail with a coffee chaser, and then putting him out into the wild to defend himself against an animal trying to take his last piece of meat. That is Cole at the moment and who cam blame him?

This all seems like a lot of complaining to me and I feel like a pansy for even writing it, but I am doing it just to let everyone know how tough it is. There is no "well at least you are home so maybe you can have some time to relax." We appreciate this sentiment, but there is no relaxing as long as Cole's newest hobby is opening up his bulbs and dumping the contents on mommy's pillow. Sweet dreams mom!

Anyways, that is it for now...thanks for reading. More to come over the next couple of days.

A Thank You Note to Slip In

We are barely doing this, whatever this means. We feel like we are barely hanging on right now. Exhausted right now would feel rested compared to where we are at mentally and physically right now.

We would not be able to do what we are barely doing taking care of Cole if Sharon (Ma) Gilbert were not with us to take on our house, Ava, Lila and now all of us home under one roof. She is doing much more than just taking care of Ava and Lila and the house. She has stepped away from her husband, her grandbabies, daughter and son in law, church, and work and friends who need her at home, not to mention miss her. Home is Boise, ID, so to pop home for a bit and catch her breath or take a break is not possible. She wouldn't do it if she could.

The meals that are keeping us fed may not seem like no big thing, but we know the time taken, the money spent, the time to fit it into your own schedules to make the food and to drive it to our home to drop off is not taken for granted. Going to the grocery store may not seem like a big deal but that seems like the impossible some days.

Everyone who has taken Ava home with them to keep her focused on things a little girl should have her thoughts filled with instead of being scared about her little brother being safe and not hurting, to keep the sunshine in her eyes shining while we are unable to is something we can not make up to any of you who have been able to do this for us!

How do we thank everyone who has done our thinking for us when it has come to every day life that is still going while we focus on Cole and recovery! You have made it possible for us to carry on.


I know I am forgetting to tell all of the things we are thankful for that our friends, family, Matt's co-workers, church, strangers, nurses, doctors, and neighbors have become for us and continue to and will continue to, but I had to remind everyone with everything in us we are so very appreciative! Every single one of you in any way that you have been able to help in any way has saved us to be able to help Cole get through recovery so we can be "Us" as a family again. We will be forever thankful and humbled!

We love all of you for all you have done and are doing!

P.S. We want to thank our friend that bought the singing Toy Story card. Cole holds it up to his ear and rocks back and forth. He would sleep with that thing if he could! This picture is from the day he got it and this is what he has looked like since.

Maybe Home is Not Where The Heart Is

Twenty minutes at home and we were second guessing if maybe the hospital was the lesser of two evils.


Truly, after last night and this morning, bringing Cole home was the right decision and seeing how happy he is.

Well and the fact that Cole was starting to hit the nurses and scream at them like a rabid caged chimp........

Can chimps get rabies? I don't know, anyways,

and he was throwing anything they offered to him that was theirs that might entertain and calm him down, back at them and across the room.

But this is how getting home went yesterday.

After getting Cole home we were so stressed and crazed becuase Cole had already hurt himself, forgetting about the chest tubes and that he had just had his chest broken into and his heart played with by an amazing heart surgeon.
He was crying "Ouchie Mommy" "Help Mommy" from the pain and you could just see and hear the pain. We felt so helpless.
We were ready to drive back to the hospital and re-admit Cole which they were totally fine with because they understood what we were taking on at home to take care of Cole here. We, did not.
Our friends tried to warn us that if we thought it was hard at the hospital, home was a war zone.
We were trying everything we could think of to make him comfortable and safe from the tubes hanging up or being yanked on by a chubby one year old named Lila.
The first 2 minutes Lila scaled the front of the couch reached up and almost removed one of the tubes from Cole's chest for him.
The next 2 minutes Cole scooted down off the couch and the chest tube with the bulb on the end became like a slack line with a boulder attached to the end and it hung just far enough off the ground to jerk it perfectly to cause the most pain it could.
After that incident we were frantically coming up with any idea to pin them here or tape them there to keep Cole from hurting or giving us a reason to rush him back to the hospital not by choice.
I thought we could put zip footie pjs on and let let the snugness of the zip pjs hold the chest tubes and bulbs to his body and then they wouldn't move and he could move around as he pleased.
Not only did that not work but it hurt and pressed them into him and it caused more tears and with those trying to be zipped up in the pjs he looked like a 90 year old woman without a bra on. His fake boobies under his tight pjs were down by his waist.
So I thought well we will leave them unzipped and pin them to the front. The way they were positioned hurt and caused even more tears and more "Help Mom." He also looked like a terrorist with explosives strapped to him. Here is a picture below of my last ditch effort on trying to make Cole comfortable. We went back to basics and put him back in the hospital gown and letting the tubes lay by his sides and one of us sitting next to him like a bodyguard at all times.



By bedtime last night I think Matt had a little more gray hair at his temples and I was so frazzled I was almost in a corner in the fetal position sucking my thumb, ready to check out.
But we took Cole up to his room for the first time in almost two weeks, for bedtime, and his face lit up. He touched stuff like he had just entered a new toy store. It was new and familiar all at the same time. I of course cried seeing him so at peace finally and happy and forgetting about the pain.
Matt played with him and Cole laughed his hard laugh which made us all laugh and cry some more.
We got Cole settled down and did bedtime tradition. A story, praying (which he will shut his eyes tight for and bare his teeth) but don't ask if he wants to pray because he will tell you no. I think because he thinks if you pray you don't get Puff the Magic Dragon sang to you. He thinks if you get prayer you don't get a song, but he gets both always:)
One of Cole's medications has to be taken at midnight so we set the alarm. Cole was sleeping like a baby for the first time in 10 days and it was really tough to wake him up to give him this nasty medication, but we did it quick with an apple juice chaser and had a diaper change as quick as we could. Cole only woke up a couple of times because his tubes had moved the wrong way and pulled on him to wake him up crying.
After the last adjustment we all slept until 7:30 this morning and it was the first sleep Cole and I had had in a week. We were so happy for Cole getting some rest!

This is why home was a good idea.............

Cole was a different boy when we asked if he wanted to go home yesterday. This is our Cole. He was so happy. When he got home he forgot about the pain for the moment.

Home with Worms Attached

Cole calls his chest tubes "wooms that hoot me" (worms that hurt me).

We had the option yesterday after Dr. Watts came to Cole's room to leave today with his chest tubes still in or stay in the hospital and hope by Monday the fluid output was lower and even then it could be even longer before we left.
After going back and forth what was best for Cole we chose to go home today and do the chest tube draining and care at home, and cleaning of incision, and medications.
Cole's little spirit the last two days was becoming more and more broken. All he says is "I go home." He is scared to death of anyone who comes in the room. So we pray that all goes well and that fluid amounts are down by Monday so maybe Tuesday we can take Cole in and they will give him something for pain and a little sedation to take the tubes out and stitch him up.
The right chest tube is still putting out a lot of fluid but the left one is borderline ready to come out. We didn't want to put Cole through this twice.
With the Fontan surgery this kind of drainage can go on for some time. One of our risks being at home is the chest tube gets pulled out and we have to rush him in because fluid will gather around his lungs and he can't breathe.
Some friends of ours were just re-admitted with their little boy for this. He is the same age as Cole. Same procedure. Same story. They went home with chest tubes because the stay was dragging because of the amount of fluid draining and one got pulled out at home. They had to rush him to the hospital because he couldn't breathe and it showed so much fluid still around his lungs.

So, we just got everything in the house and getting started on the care at home part. We wanted to let everyone know Cole is home but literally not without strings attached. He seems more relaxed already.

I don't have a lot of detail yet because I haven't slept, well I can't remember when. I will be getting a light hearted blog entry after getting caught up. Good Cole hospital humor:)

Welcome Home Cole Bear! We love you so much. I think this was the best birthday gift Ava could ask for! Cole coming home safe!