Colin had his 6 month cardiologist appointment yesterday. I will share the BIG news first, then go into how the appointment went.
The time has come to plan Colin's 3rd and hopefully final heart surgery. The surgery will be 4 - 6 months from now! (Yeah my mouth dropped when she told me that!) I had to choke back the tears when she said that it was time. Though I think a few got out even though I was trying so hard not to. I thought we had more time before the next one.
The first step is a heart catheterization so they can get a good look at what all is going on in his heart. This will be scheduled for 2 -3 months from now depending on scheduling issues. This is Colin's first trip to the cath lab, so I am terrified of it. Once they know enough from the heart cath, the Fontan surgery will be about 2-3 months after that. So we are looking at August - October. (Mouth still sitting on the floor).
The heart cath, they will go in through Colin's groin and take measurements of his pressures and take a look at his leaky value. It should be just an overnight stay. With his surgery, we are looking at 1-2 weeks in the hospital. Colin will need to be pulled out of daycare 2 weeks prior to surgery and 6 weeks post op (Thank GOD for retired grandparents!).
The decision for the surgery was not based on Colin's heart function decreasing, but he met the weight requirements, he has had harder time keeping up and gets out of breathe quicker, weight gain was not so good, and he is a little bluer tint. Also on his last echo, they saw narrowing of his pulmonary artery, so this will either be addressed in the cath lab by ballooning it or during the Fontan. His cardiologist would rather get him on the books now than wait until he absolutely needs it.
I have very mixed feelings right now. I know he needs this 3rd stage and will do so much better once he has it. It will give him more energy, his heart will not have to work so hard, he will gain weight better, his color will be more pink. I like the idea of getting it over with so it can stop hanging over our heads. BUT it's hard to realize I have to hand my 3 year old over again for open heart surgery. I am scared, terrified of having to do this again. Colin last surgery was when he was 5 months old, our lives have been so removed from that aspect. It's a place I knew we had to go back to, but I want to throw up thinking about it. Watching him sleep last night, I couldn't help but cry thinking of what he has to go through in the next few months. As his mother, I wish I could shield him from this, no kid should ever have to face something like this.
BUT he is strong, God has a plan and has taken care of Colin so far. Colin has some amazing guardian angles watching over him. I know he is in good hands through God and the doctors, nurses, and staff at Texas Children's hospital. I know we have a great support system to get through this.
As for the appointment, they were NOT able to do any testing because Colin just plain refused! He screamed so long and hard about taking blood pressure and EKG, they were not able to get readings. BUT he did let them put the halter monitor on for a 24 hour recording AND he did go in the big boy potty 4 times while there.. hey you win some, you lose some. We took him and Katherine out for ice cream to "celebrate" our day.
I want to thank you all for your continued support and prayers. We will need them in the upcoming months. Please pray that this is the last intervention needed, it is the last planned one, but we hope that this will be it.
Playing games BEFORE the melt down
Not happy after several attempts at trying to get the EKG
Not letting this contraption stop me from having fun
4 comments:
Sigh - Fontan time. Will be praying for you guys FOR SURE!!! I'm sure Colin will rock it! The last 2 kids I followed through their Fontans rocked them - home within 7-10 days. Will be praying the same for Colin. And btw, for the Holter Monitors (Bodie's had several of them), the easiest way to keep them on is with a backpack. Do you have one of the backpack leashes? If so, the holter monitors fit perfectly inside them). I just take the leash off and let him wear the back part part. Then, it doesn't get in the way of anything...
Good luck!
Dearest Jennifer Lorene and Matt,
We will be making plans to be there with you during this.
It was so very difficult to read this as I'm sure you know, and try to realize the pain and fright you are going through.
It puts a lot into perspective about what IS and what ISN'T important...and even more so, what SHOULD be important, that we push back and figure we have another day to "get around to it".
...Nothing being more important than a child and their chance to experience what you have had, and more.
You two have done everything you could to make that happen for BOTH your children, and this will be another challenge that will bring your Family and Friends to your sides to support and learn from, to use at some other point in this Life, and build the strength that we will all hold each other up with.
You are all in our Prayers and Thoughts and will be there always.
Love you each so much.
Your Uncle Fred & Aunt Marie
itske mevenI shed a few tears last night after talking to you.as It is a lot different between knowing we had to go down this path eventually and realizing we have to start the journey now is a bit difficult. But we have been so lucky as a family to be able to lean on each other, to gather strength from each other since Colin was born. He does indeed have an army behind him every step of the way--he is after all Alexander the Great.
I shed a few tears for you. All I can say is that if you ever need to talk to someone else, call me. Fear can just cripple you, lean on God, family, and friends and let them help when needed. You are strong, and an amazing mother and I know Matt is an awesome dad. Love yall!!!!
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