The Mayo Clinic

Sorry it's been so long since my last blog post! I try to keep everyone well informed on Facebook but this is a nice way to summarize and wrap up what a roller coaster ride it was at Mayo. What started as a week with the Aerodigestive Clinic seeing doctors and running tests ended up being a month in the hospital with a major surgery and lots of hard decisions. I'm glad we're finally home but it was definitely one of the hardest hospital stays we've had  and I'm still struggling with everything we learned.  

The big reason we ended up in the hospital is Jameson has something called complex sleep apnea.. This is a combination of both obstructive and central apneas; obstructive being caused by structures in his airway that relax and obstruct his breathing, and central apnea being when the brain actually stops telling you to breath. The part of the brain that controls unconscious functions like breathing, heart rate and temperature is an area that Jameson never fully developed due to his genetic disorder. So because of that he tends to hold his breath when he's sleeping and that's what causes him to desat. These desats are when the amount of oxygen in his blood goes down to a dangerous level. A normal healthy person will probably have a blood oxygen level of between 95-100 throughout the day and night. When Jameson desats, he drops down to the 60s, 70s or 80s and his sleep study told us he was doing that 50-100 times an hour depending on how deep he was sleeping. Because of that, we opted to do the airway surgery to help with his obstructive apnea and at least tackle half the battle. The surgery included removing his tonsils and adenoids, shaving down his trachea and epiglottis, removing part of the turbinates in his nose and doing Botox injections in his salivary glands. It was a tough and extensive surgery but Jameson did amazingly well. The pain ended up being a non issue it was dealing with the central apnea and lungs that ended up being the reason for our long stay. 

As of today, we are still struggling with the right things to do for him. We've got him set up on a BiPAP machine now that he is supposed to wear at night and during naps. We have found this to be one of the most difficult aspects of the journey. He doesn't want to wear it (understandable) and I can't explain to him why he needs it. When I try to keep the BiPAP on all night he doesn't sleep well and that in turn causes more seizure from lack of sleep. But without the support he is still desating all night. So for now we are still in limbo on what to do and how to proceed. The doctors and palliative care team at Mayo talked to us a lot about regression and decline while we were there and what that could mean for him. I haven't fully accepted that yet and I still don't know how to wrap my mind around it honestly. I've asked them, how will I know when I'm pushing him too hard? And there's never a right or easy answer for that. I think we will just know. 

I hate for this blog to sound sad and depressing because that is not Jameson's life to me. I try my best to make his life only about love and happiness and smiles. I will continue to strive towards doing that as we go through these battles. Today may feel dark but tomorrow could be a beautiful sunny day and I try to cherish every one of those happy days. 😊

Birthdays and big trips

This is probably the longest I've gone between blog posts...almost two months! I think I do a good job of keeping everyone up-to-date with pictures and status updates on Facebook, but its always nice to sit down a write out a good review on how little man has been doing.


The biggest thing to happen recently in Jameson's world was an amazing trip to the Omaha zoo for his 3rd birthday! :)  While it can still be tricky with his light sensitivity to get him outside at a place like that, we all had a good time. He especially enjoyed the indoor monkey houses and the aquarium. This is our second zoo trip in his life and we always make a point to get a stuffed animal of whatever he seemed to have the most reaction to. Last time it was the red pandas and this time it was the chimpanzees. :)


The other big thing going on in our lives right now is preparing for our upcoming trip to the Mayo Clinic. Its going to be a VERY busy week with some long days but my hope is that we can just transition all of his care here and really finally feel like we have a team of doctors that are communicating with each other about how to give Jameson the best life possible. Our first trip will include appointments with Pulmonology, GI, ENT, Neurology, Neurosurgery, Urology and Genetics. He will have another EEG, sleep study, swallow study, chest CT, upper endoscopy and a 24 hour PH probe testing for silent reflux.


The second trip won't be until probably closer to the fall and that will include Nephrology, Endocrinology, Ophthalmology, Physical Medicine, and therapies. Plus whatever follow ups from the first set of appointments. While it feels like a lot, it will be worth it to get into the Mayo Clinic system and have every single one of his doctors in one place talking about Jameson and how each of their departments can work together.


Thank again for stopping by and checking in on little man. I will plan to update everyone in a few weeks once we've been to Mayo and share what our experience was like.

It's the little things

One of the most difficult things to overcome in life is comparing yourself to others. I find myself often comparing Jameson to other kids. Typical kids. Special needs kids. Kids with epilepsy, etc. Its like I'm always trying to find where he fits in some way or another. Over time, I've realized he doesn't really fit anywhere. He's like a special sauce; with some ingredients you recognize and some that are a secret to only his maker up in heaven.


So when he makes little accomplishments in life, they are extra special to me. It can take such a long period of time for him to do things but once he does, they are so incredibly amazing to watch. One example that really sticks out in my mind is his smile and laugh. I don't think little man purposely smiled until well after his 1st birthday. It took even longer to get him to laugh, and when he first started doing these things it would be a rare occurrence. I can happily say that now at almost 3 years old, Jameson smiles and laughs every single day. He talks all day long! (Well, his version of talking which is more like a bellow) :-)   He watches you smile and smiles back! If you had told me this 2 1/2 years ago I would've thought, wow that's all he's doing at 3 years old? But experiencing it completely changes your outlook.


Another thing that has made me a proud mom lately is his working towards sitting. Its been coming along very slowly over the years with weekly physical therapy, but he wants to do it and is trying. I couldn't be more grateful to the fact that he always tries so hard to do these things that his body just doesn't allow him to do very easily. He could just stop trying after 3 years of not getting it, but he wants to hold his head up and sit. He wants to move his legs and hopefully walk someday. He's an amazing little man!


To say I'm proud would probably be the understatement of the year. My heart is full of love and awe for everything he does and every little thing he accomplishes. It's easy for all of us to compare ourselves to others because its just a part of our human nature. Just make sure you take that extra time to appreciate the small things that make each of us special.