Tuesday, January 10, 2017

Happy 8th Birthday Georgia!!!

8 years ago today at 1:15 am a beautiful princess came into our lives. Georgia Ada Grace, you are a shining light in our lives. Jake misses you so much. At supper today he stood up and said..."where did my sister go?". She's coming, Jake...Just 3 more days. When we talked to Georgia on the phone tonight she said when she see's Jake she's going to pick him up in her arms and spin him around. LOVE. Miss you, my baby girl. See you very soon.

Pre-Cath Day was today. It involved a ECG scan, x-rays and bloodwork for Jake, followed by an indepth conversation with the nurse and the doctor about the cath itself, the risks involved and the recovery period. In a nutshell, Jake is having a pre-Fontan diagnostic cardiac cath and will possibly be having his narrowed left pulmonary artery dilated or stented as well as any collateral arteries coiled.

Here is Jake at the ECG Scan, he wanted his own copy to take with him when it was done :)




What does all that mean??? It means that this cath procedure will see Jake intubated with access through both his groin and his neck (The neck is necessary this time because the resistance of the lungs can't be measured by going through the groin). In the Fontan procedure, the route of blood to the lungs is changed so that it's no longer being pumped in but is a drip flowing through with no pressure behind it. Because of that, Jake's pulmonary arteries need to be clear and wide otherwise the Fontan would not be a good match for his physiology. It also means that the cath will be performed, then the head doctor will come to see us and make a report and if possible head back in to enlarge his left pulmonary artery and possibly his right as well. The heart is an amazing vessel, and in a case like Jake's where so many interventions have happened and the blood flow is not taking a normal route, the heart will grow it's own collateral routes to where it believes the blood should be flowing - these over time reduce the effectiveness of the repairs being done by the Norwood, Glenn and now Fontan, so these need to be coiled perodically in the cath lab.

One point of concern is that despite his eating being above normal, Jake has lost two pounds since early December. He is now down to 29.5 lbs, while the optimal weight for the Fontan is 33 lbs.

Here he is on the scale!



Tomorrow Jake heads into the Cath lab at 12 pm, for a procedure that will take 3-4 hours. After that he will spend 4-6 hours in the recovery room. At that point Jake will either be released to RMH or will spend the night at SickKids being supervised.

Prayer Warriors --- we need you tomorrow. Signing off on the list of potential risks was an incredibly hard thing to do. I want to grab my boy and run for the hills. Or pull out my own heart and give it to him. I wouldn't hesitate if it would save his life and keep him from having to go through all this. But here we are. There's no away around this valley - we have to go through it. With each surgery Jake has had, there has come a point where my faith is not sufficient - I'm feeling that point fast approaching. Please uphold Jake for me.

His strength is perfect, when my strength is gone.
He'll carry me when I can't carry on.
Raised in His power, the weak become strong.
His strength is perfect.

Perfect for me. Perfect for Jake. Perfect for Jon. Perfect for Georgia. Perfect for all our loved ones and friends.

One moment at a time...Here we go.


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