I am a disaster. We are leaving for Boston this weekend. I would give anything in the world not to go back. This life is so very unfair. I can’t believe he has to go thru this again. We have decided to rent an apartment in case we are there for a long period of time (if not…we’ll we will break the lease) but we have decided to take our other Son and our nanny because we think its important to keep the family together. We are leaving this Sun for Boston stopping along the way and finishing the journey on Monday. The cardiac cath will be done late in the week and surgery is scheduled the following Wednesday.
We had our last cardio appointment today with Dr. Patel. A very good friend of mine who also has a child that has the odds stacked against him as well, gave us their good luck onesie! J wore this onesie thru 3 surgeries and he is doing great. I was honored to have his shirt passed down to us.
He did a very thorough echo and everything looked as good as it can be. His Glenn and SVC look wide open with good flow. All this pulmonary veins appear to have good flow. His AV valve although slightly stenotic is working well with very minimal leakage. His pulmonary artery in color appeared to have even grown a bit which is very reassuring. The pulmonary artery is very important because the Fontan surgery is going to connect the IVC (Inferior Vena Cava) to the lower half of the body making pumping oxygen to the lower half much easier for Logan. The Glenn connected the SVC (superior vena cava) to the PAs and once we have the IVC connected to he will have a Total Cavopulmonary Connection or a Fontan Circulation.
This is a very basic drawing of a Fontan that is done on a child with Hypoplastic Left Heart Syndrome. If you take away the right 2 chambers from this drawing you would see what Logan has. The Fontan is the “Tube Outside the heart” that connects the IVC.
We had a much smoother appointment this week. For one thing, Logan is very into counting right now albeit every number is ‘six’. When he learned that EKG leads could be counted he decided they weren’t half bad… “six, Six, Siiiix, Siiiiiiix!”
He weighed in at 9.7 K or 21 lbs and 33 inches in length. Right now he is wearing 12-18 month tops and 6-12 months bottoms, well, and then 3-6 months socks and shoes. Just to give you an idea about his size.
He is saying very random words right now….he says, ‘six’, ‘eat’, ‘hot’, ‘nuts’, and ‘hi.
He is really starting to enjoy Ethan. They play together all the time and love taking baths together.
You can see clearly the oxygen difference between the two when they are together in the tube.
Logie is loves chasing balls. He throws them, kicks them and then chases them all over the house and yard.
I just want to thank everyone for their support thru all of this. I literally couldn’t go thru this without it. I know that this will not be the end for Logan. He is going to need valve replacements, pacemakers, and eventually a heart transplant. The transplant could be in 6 months, 6 years, or 16 years, we have no idea. Living like this is an incredible blessing and curse at the same time. A curse for the obvious reasons but a blessing because it has given us so much clarity. Clarity on what really matters. I don’t care about fancy preschools, where he falls on arbitrary charts compared to his peers. I don’t care about college and if Logan will get a high paying job. No. All I care is that both my boys are happy, healthy as they can be, and have a good quality of life. Nothing else matters.
Life is about this moment right here. As long as we have each other, we have everything.
While we are in the hospital I will update his Facebook group much more often than this blog. If you would like to join please look up Heterotaxy Syndrome- Logan Spyker on FB. I can quickly post updates there from my phone.