See what I mean about him being the cutest thing ever? I am not biased at all!!!
Logan has made so many strides lately! He is doing just terrific. One of the greatest things that we ended up doing was hiring a nanny. This was tough to do because its hard to turn over control, and it takes a lot for us heart Mom’s to trust anyone with our kids but it turned out to be the exact thing that everyone in our family needed. It is allowing me to work more, which has been very good for my mental health, and it has introduced someone to Logan that he doesn’t associate with any of his medical issues. Our new nanny has never given him meds, never seen him in the hospital, and never taken him to the doctor. Logan trusts her! And the best thing of all is that he has started to eat for her! it is very interesting because he still will not eat for me and he actually stops eating if I am in the room.
He is verifying that this is all psychological and not a physical issue. So I am making a point of not asking this nanny to ever give him medicines or be involved the his health issues, because he trusts her!
I think that is has been fantastic for him to be around a caring person that he feels 100% confident won’t try to force him to take medicine, force him to put on a pulse ox, or take him to get boo boos at the doctor. He has made so many strides since the arrival of our new nanny that it has made me realize how this whole journey has really affected him mentally.
(love being read too)
Now that he is getting more nutrition he is able to do physically advance as well. For the past few months he had been extremely frustrated because although he was mentally like a 20 month old, he was stuck physically in a 6 month old’s body. Him being able to move and explore has really opened up a whole new world for him and he is so happy about it.
He is sitting up very confidently and has figured out how to go from sitting to laying and vice versa. He is so so so very happy at this new ability. He feels like a real person now!
With his new-found independence and strength, going to the cardiologist has gotten to be a bit more of a struggle.
(EKG and Blood pressure)
Last check up was good. O2 is is decent (mid to upper 70’s) sometimes hitting 80 sometimes hitting 70. He definitely looks blue when he is moving around and playing. His feet get very blue, and the area around his mouth and eyes as well.
He currently weighs 9.1 kilo (20 pounds) and is 30 inches in length. He is the sweetest little thing you could ever meet. I wish everyone could meet him.
The last week we had a stretch of weather out of the blue where it was 75-80 degrees. Logie had the time of his life. Last summer his body couldn’t handle heat and he would just sweat like mad if he was in the sun.
(he didn’t eat these apples btw….)
(we actually had to bring this picnic table inside because we couldn’t get him to come in without it)
Ethan is also enjoying Logan now that he is able to interact with him more. Ethan almost has a bit of a playmate!
Still working on figuring out a surgery date. Couldn’t tell you if its going to be April or June at this point. I am hearing something different from everyone that I talk to. Trying my hardest to figure all that out now.
So, I have not updated in a long time. Well, actually about 6 weeks. I have been spending all of my free time in organizing the new Heterotaxy Network website and forums, and trying to just decompress a little and enjoy the non-surgical months a bit.
I found out that Logan needs to have his next open heart surgery, the Fontan, next month and I feel as though someone has just kicked me in the gut. I knew it was coming and we have had many talks about being this spring, but to “next month” was very hard to hear. So hard to hear and process I have needed some time before I could even discuss it.
Logan needs to have his fontan surgery next month for a number of reasons. His oxygen sats are mid 70’s and having this low of oxygen levels does not give him much buffer in case of illness. Currently, his top half of his body via the superior vena cava is better oxygenated, but his lower half via the inferior vena cava in not connected and is not oxygenating well. This is important for several reasons; 1. being that having his superior and inferior vena cava’s connected to his oxygen circulation will greatly improve his over all oxygen levels, and because when the inferior vena cava (IVC) is connected in, blood will begin to travel thru his liver. Liver blood is very important for his hemodynamic (blood flow) stability because it has been found that there is a unique function that the liver play in the blood by putting special enzymes in it that help regulate your body’s ability to stop the growth of collateral veins.
Everyone has heard of those stories of a man or women having a blocked artery only to find out that the body actually compensated and grew a new path around the obstruction. That new path is a collateral vessel. In those situations collateral vessels are beneficial to the heart. But how does the body know when to grow collaterals and when not too? Well, that is not completely understood. What is known is that there is a special role the “liver blood” plays in this process which is it stops your body from just growing the “new paths” continuously.
For heterotaxy kids this type of “checks and balances” is essential because heterotaxy kids (for an unknown reason) tend to grow these “new paths” much quicker. Again there are some instances where they could help your heart, but more times than not these news paths end up taking oxygenated blood away from the lungs. The sooner that we can get his blood circulating thru his liver, the sooner he will get this “hepatic factor” into circulation.
Lastly, the sooner we can get his bottom half into circulation his heart won’t have to work as hard. When his heart isn’t working so hard there is a better shot at keeping his AV valve functioning well for a longer period of time. I always knew that the repair that Dr. Del Nido on Logan’s heart was amazing, but the more I learn the more I realize how spectacular the repair actually is. When Logan went in to have his first AV valve surgery his valve was a 4+ Severely regurgitating, and just barely functioning. Currently, 12 months after his last AV valve repair (he has had 2) there is ABSOLUTELY NO REGURGITATION. NONE. PERIOD. I am saying this in all caps because I want to emphasize this point. I have heard many cardiologists and surgeons say that it is impossible to fix these valves. That no one (worldwide) is having luck repairing these AV valves. Well, I just want to shout it from the roof tops. My son is living proof that Dr. Del Nido at Boston Children’s Hospital is doing what the rest of the world is claiming is impossible. He is repairing these valves, and not just to a manageable level, he is repairing them to a level of ABSOLUTE ZERO regurgitation. I am even temped to post his echo online because so many doctors do not believe it. If you have a child with an “unrepairable” AV valve, please seek the opinion of Dr. Del Nido at CHB.
Anyway, sorry for the rant but I am so sick of hearing that it isn’t possible to fix them. It is. But please…don’t think that just because Dr. Del Nido can do this repair, that any surgeon can if they just tried. This is not the case. This is a very specialized surgery that should be done by someone with experience.
Beyond the fact that Logan will need to have open heart surgery next month….he is doing fantastic. He is so happy. Seriously, this kid is SO very happy. He is now 20 pounds (9.1 kilo) and is 30 inches in length. He is over most of his trauma from the last surgery, and is willing to let people hold him, and his is willing to touch and explore new things. He isn’t terrified of every sound and movement anymore. He is just loving life….which is one of the hardest things about this next surgery. He was so traumatized for so long…the thought of him going back to being scared of everyone and everything is utterly heartbreaking. Honestly, I have to just end this post right now, because just forcing myself to write this post is making me feel sick. I did however, want to update everyone. I will make an effort to do so more often, it was just nice to take a break from writing about all of this.
Logan is not on the surgical schedule yet, but most likely it will be the 2-3 week of April.