So it is Sat. night I am at the hotel one block away, Scott is sleeping at the hospital (only one parent at a time so we are rotating). After Logan was admitted they though he looked pretty good. I think they were just nervous having not seen him when we spoke on the phone. Our cardiologist here said that Dr. Patel had taken really good care of Logan.
They did a short echo and checked his valve based on that study they decided to wait until Mon. to get things rolling. So Mon. Logan will have a Cath done, a sedated echo, and a MRI. Tues. he will have surgery. So this weekend was just for observation and they haven’t done anything other than put an IV in actually this evening. They tried twice this morning with no luck, and twice this evening and finally got a vein in his little foot. He is still doing OK he is pretty uncomfortable, I mean he was at home also, but now that we are here and he doesn’t have his comfy swing and baby movies to watch so he is just that much more uncomfortable now. He hasn’t smiled much since we have been here. He has a roommate, a little girl named Ireland who had open heart surgery at 10 days old. She just sailed thru it. She had her pulmonary veins repaired just like Logan will. She barely cries sleeps like a baby and you wouldn’t believe how good her scare looks just 5 days later. It is reassuring to share a room with such a success story.
The nurses here are so far wonderful. Much different from the other experiences that I have had at our local children’s hospital. Nothing freaks them out, they have seen it all, and they are very calm. They are giving Logan “cluster care” meaning they are trying their hardest not to disturb him too often since he has those crying fits. They are very gentle with him and let us do most everything, and they let us teach them all the things he likes and even how he likes to hold his blankey.
Logan’s doctors are also very nice and his cardiologist comes to visit multiple times throughout the day. So far I have no complaints.
Logan has been watching cartoons on our IPad (the greatest invention ever made) and we even held it up for him to watch while they were attempting to get a line in. The nurses all laughed and said we brought along a baby flat screen for him.
I am so mad because I left the cord that connects my camera to my laptop so I can’t upload any pictures that I have taken. I will have to take pictures with Scott’s Iphone from now on. I will update again on Mon. after we speak with the doctors and Logan has his tests done.
Thank you so much for all your support, it helps SO much to know how many people are thinking and caring about Logan. Hugs to everyone. XXX
I created a FB page because it will be much easier to update than this blog while we are in the hospital. Also, I can update FB from the phone. Sign up to be his friend and follow him there. I will continue to blog here but it will be significantly less (I am imagining) for the time being.
Either look up Logan Spyker on FB or click the following link. We are now headed to Childrens to have Logan admitted.
So I have been holding it together really well so far
(up until about 3 hours ago).
I am now officially terrified.
My stomach is churning.
I can’t sleep.
I can’t stop thinking about the what ifs.
What if this is the last night that we will ever all be together at home.
I am just not ready to start down this path just yet.
I feel like I need a couple more weeks,
but I know in my heart that I would feel this same way, even then.
I know that he is uncomfortable, I know he needs to get fixed.
I know how lucky we are to live in a time and place where all of these options are even available…
There just is something so definite about leaving for Boston tomorrow morning and I am utterly terrified.
Dr. Patel saw Logan this morning and thought he looked good. No decline or anything in the last 2 days. We are going to take a commerical flight tomorrow morning at 6AM to the aptly named Logan airport in Boston. We arrive at 10AM and we will go right to the hospital to check in. We were unable to get a flight today and because Logan is looking good everyone thought tomorrow would be just fine.
I am going to explain this in a very over simplified way but for the sake of boring you lets just say that Logan only has the blue part of the above heart. In a healthy heart the left side has a mitral valve and the right side has the tricuspid valve. When you have a single ventricle they call that valve just a AV Valve or atrioventricular valve.
There is no picture (that I could find anyway) of this valve problem on a single ventricle so bear with me – but if you pretend that in this picture that the RV (right ventricle) and the LV (left ventricle) are one, you can kind of get a picture of what Logan’s heart looks like. (Again extremely over-simplified). The problem is that the valve needs to close not be that open. It has gotten worse and worse because the walls of the ventricle pull apart and so more and more blood falls back down into the ventricle instead of being pushed up into the atrium. This situation is very tiring for Logan’s heart because the heart has to constantly try to push the blood back upwards only to have it just fall (or regurgitate) back down.
This is bad.
This is a BIG problem and one that is tricky to fix. Dr. Patel (his cardiologist) said yesterday that he cannot wait till Nov. 16 for surgery and that it has to be moved up. I contacted the cardiologist at CHOP and he agreed that this needs to be taken care sooner rather than later and most likely in the next week. I asked him what would happen if they couldn’t fix it, and he said that there are not that many options at that point other than transplant.
I hung up with him and remembered that a friend of mine Annamarie (founder of 1in100) always told me about the amazing work that Pedro Del Nido and his team are doing on valve reconstruction. I thought, I might as well see what he says since this has become such a big deal. After talking with and listening to the all the experience that he has with this difficult defect I have decided to have Logan transferred to Boston. Dr. Del Nido would like to attempt to repair this valve as soon as possible because he said there is no reason to wait and when kids have severe leakage they can deteriorate very quickly. Right now Scott and I are trying to make arrangements to get him admitted to Boston Children’s hospital tomorrow. I am meeting with our cardiologist here tomorrow so he can asess if he has made any further declines in the last 48 hours and to determine if he needs a medical transport or if we can fly commercial. I will do my best to keep everyone updated.
Logan is feeling a lot better. He is still a little hoarse but overall he’s doing pretty good. He is smiling again and giggling. I would say overall he still behaves much like a newborn even though he is now 4 months old. He still sleeps 15-18 hours a day, and still needs to eat every hour or two (Yes, even thru the night). He is definitely behind in his physical abilities. He can’t hold his head up for very long and isn’t even remotely close to rolling over, sitting up, or even doing a little push up. It is taking virtually all of his energy to just pump blood thru his body, eat, and breath. He currently weighs 11 pounds which given his circumstances is actually quite good, he is gaining – it is just very slowly.
He is very interested in his hands he is always playing with them.
Logan is also starting to feel uncomfortable. He needs to be constantly soothed. He is in a swing most of the day (a lot of the time he doesn’t even want to be held) and he always needs a pacifier and his blanket. The only people he wants to hold him are his Dad and I because if you don’t hold just right he gets really upset, and actually if he is REALLY upset only I can hold him. Most nights he even sleeps half the night in his swing because if he is laying flat too long he also gets uncomfortable.
We spend most of our time just trying to keep him comfortable.