Just a vent…

I am trying to not be angry while bringing in this new year. Its not quite going the way I had planned though. We found out yesterday that a little boy named Gavin lost his fight with SMA on New Years Eve. He was 5 months old. My heart grieves for the family.

But the more I have sat and thought about it all, the more livid I have become. Logan turns 6 months on Sunday so the assumption is he is a stronger type 1. If Logan wasn’t a stronger type 1, I’m not sure he would be with us right now. If he was weaker and passed within the past 4 weeks, we would have been alone aside from our pediatrician who has been absolutely amazing. We would have already been to STL if the receptionists who made appointments had done what the doctor had asked and got us in ASAP. Instead I got a b*tch who scheduled us for 6 weeks out.

We have pushed to get him sooner and the receptionists became even less helpful. The last few times I have contacted the local pulmonologist, they have told us they want to wait until we see the pulmonologist in STL. Our pediatrician ordered us a pulse ox because they didn’t want to. Now that I sit and type this out, maybe we should have sought out the MDA more in our area but since we had plans to go to STL, we were going to register with MDA STL and then have it moved down here to SW MO. Every one seemed confident in going to STL before making any final decisions.

A part of me is questioning waiting for so long, but on the other hand we have been researching, educating ourselves, and working closely with our pediatrician to keep an eye on Logan. We only have 1 more week though.

This has made me question how many other newly diagnosed families go through this alone. Where no one seems to know anything and you are just waiting. We have had many SMA families reach out to us asking if knew our options available for Logan’s care. Thanks to the great internets we have researched the different options. We are waiting until we meet with specialists to make a final decision though.

We have many families of SMA children reach out to us. From those who took an all natural route, to non invasive, and also some of the more aggressive type 1 parents. I was actually told by one that I was murdering my child if I didn’t go through with the invasive surgeries. I don’t tolerate people like that well. Heaven help those if they had the nerve to say that to my face.

I didn’t write about this yet. Not sure why…maybe I’m trying to forget. Last Friday night Logan’s alarm on his pulse ox went off for his oxygen saturation level going below 85. When I got to the room (2 seconds) it was at 88 but it took several seconds of me moving Logan and rubbing on him for the level to come back up the mid 90’s. He went right back to sleep though and didn’t have another problem. A friend asked what happens if it doesn’t come back up. I told her then we will call 911 and sit, hold him, sing to him, tell him how much we love him.

The hardest thing to think about is Logan always being paralyzed (until we find a cure). We also know there is no guarantee that he will ever speak. I have talked with families whose child has perfect diction and  I have talked to families whose child can only speak a couple words and is over 3 years old. There is also no guarantee that if we pushed through with invasive surgeries (or even non invasive techniques) that Logan still wouldn’t pass soon due to getting sick.

There are so many things to weigh. I truly believe there is no right or wrong answer and it is up to the parents to make their choice. That choice should be respected no matter what it may be though.

 

I feel better getting this all out. Now to continue on my day with my two boys in a better mood! Bolt has been requested to watch with Logan 🙂

10 thoughts on “Just a vent…

  1. I completely understand how you feel. When my daughter, Alana, first started showing signs, I started reading/researching everything I could. She started showing signs at 6 weeks, but the initial SMA test came back negative. She wasn’t diagnosed until she was 8 months old, due to the fact that she had a rare form of SMA (only found in 3% of SMA cases).
    In all that time that we waited for a diagnosis, her father and I had a lot of discussions as to what we thought was best for her. Her neurologist tried to tell me that I didn’t have Alana’s best interest in mind because I wasn’t willing to have invasive procedures done (G-tube and Trach).
    Three weeks before Alana was diagnosed, she had to be intubated. Children’s Mercy here in KC decided to send us to Children’s Hospital in St. Louis for further testing. While we were there, her gene coding test came back…….she had SMA (compound heterozygous). The main neurologist at Children’s in St. Louis told me that they didn’t recommend “prolonging her suffering”. I was already on the same page………….she had been intubated for a couple of weeks already, unsuccessful attempts to extubate, and her right lung would not stay inflated. I knew that a trach was out of the question, due to her condition.
    We were transported back to KC to let family and friends say their goodbyes and Alana passed away on April 25, 2012.
    I wished that things could have been handled differently with her. Bi-pap and cough assist started sooner, a diagnosis sooner…….If interventions had been started earlier, I might have had my baby girl with me to celebrate her first birthday. Even after her passing, I have so many questions and no one to answer them………..

    Don’t miss a second with that beautiful baby……..even during the hospital stays. I never left Alana’s side, except to eat and shower. I spent a full month in the PICU, sleeping in a chair, but I’m so very thankful that I did.
    Lots of prayers and love coming Logan’s way. Follow your heart and do what you feel is best for Logan……

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  2. I agree that the patents decision should be respected. My son has PFFD and there are two opposite treatment options – amputation or multiple surgeries to lengthen. Parents in my support group sometimes bicker over which is the ‘right’ one. These are hard decisions to make and it only makes it harder when others judge your choice. Nobody but you and your husband know what is best for sweet Logan and your family.

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  3. Have you ever talked to anyone at the Shriners hospital in St Louis? I think they’ve help children with SMA and have phenomenal doctors and state of the art and newest treatment technology available. My husband is a shriner and we toured the hospital. Absolutely amazing! It is worth a shot to call. 1-314-432-3600.
    No human especially those that are fighting to live should be put off. EVER! I truly hope they can help you. my prayers are with Logan and your family!

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      • Shrinershospitalsforkids.org
        They have all of their own doctors. This website will give you all the information about the doctors and what they can do for Logan and your family. You can also contact your local Shrine and they can start you in the direction to applying. When you are accepted you will be given a sponsor that will help you with information and check in with you. What state are you located in?

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  4. This is a very hard dx but when you set your mind to what you want for your child people should respect that you are his mother and what you say goes. With RJ when we were told about the trach, we had already tried the bi-pap and was very unsuccessful. It is very scary to know your child is sick and there is truly nothing that you can do to help them. Pray will help you thur this and you have them coming your way from GA.

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