Winter Blues

While I do love the holiday season, its also the most stressful part of the year. I enjoy spending Christmas and New Years with friends and family but along with it comes the woes of winter illnesses. Any parent hates this time of year because of all the colds and viruses running rampant through schools, church, and nearly any public place. But for parents of kids with medical issues, its even more difficult than you can imagine.


The common cold can hit people in many different ways....usually a low grade fever and maybe some coughing and congestion. For kids that have respiratory problems already, a common cold hits them like a freight train and then compounds over time to cause permanent damage. Jameson has a chronic respiratory condition called Bronchiectasis. This is where his lungs have become inflamed and damaged over time due to so many upper respiratory infections (colds) during his lifetime. Each time he gets a cold, it causes a little more scarring and damage that isn't reversible. There's no cure and no treatment. The only way to help slow down the progress of something like this is to keep him away from sick people as much as possible.

This winter season has just begun but little man is already on his third illness. I had a lengthy conversation with his pulmonologist about this and the decision was made to pull him out of preschool for the time being. I'm sad about this because Jameson has had a great time socializing and being at preschool for the last few months. But I'm also on the same page with the doctors that we need to get these illnesses under control before we can think about school again. So he will start a new round of antibiotics today and have the rest of the winter to cuddle up at home and hopefully stay healthy.


While I don't like the idea of him being in a bubble, we also have to know when things are worth the risk and when they're not. That's just the life we live. I want Jameson healthy and happy for as long as God allows him to be with us, so if having to stay home for the foreseeable future gets us there then I'll take it. We can make any situation work and still manage to have fun adventures and check things off the bucket list even in winter! Thanks everyone as always for your love and support. :-)

Preschool and a lesson

It's been nearly two weeks since Jameson started preschool and he has continued to amaze me at how well he's doing. Just this summer we spent a month in the hospital recovering from surgery and dealing with his ongoing battle with sleep apnea. Now I look at him going to school and it's something I never imagined in my wildest dreams. Today we actually let him be there by himself without me or grandma standing in the hallway in case an emergency happened. I'm just flabbergasted at how easy the transition has been for him.

I've learned quite a lesson during this experience of allowing him to go to school and spread his wings....I constantly underestimate him. It's not something I do intentionally. I think after all the hospital stays and sleepless nights of oxygen and feeding pumps, I just couldn't imagine a time when this would be possible. I thought it will be far too much for him; he will be over-stimulated and overwhelmed. And yet, I seem to be the only one overwhelmed. Overwhelmed with the feeling that I think a lot of other typical parents have, does my child still need me the same way he used to? Of course he does in a sense, but dropping him off at school and watching him light up to see the other kids and teachers shows me that his world has now expanded beyond our living room. Beyond the house he's known his whole life and the people who've always been there. His eyes have opened up to a whole new universe out there. And he deserves it.

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. 😊