Today a What-If Became a Now-This

Life is such a roller-coaster ride.  When Jameson came into our lives we knew there were going to be ups and downs.  One of our top priorities is to make Jameson’s life as normal as possible, while doing everything we can to keep him healthy and growing.  We have embraced every appointment, every procedure, every follow-up; and even more so have counted our blessings and enjoyed the calm.  Although I know and understand what lies ahead, and all the what-ifs that may develop as we go, I get settled into our routine.  I get used to our normal, and I forget that speed bumps lie ahead.  Jameson’s last surgery was last March.  Sure, he has medical appointments, he goes to speech and occupational therapy every week.  But this past year has been so uneventful.  I have happy boys running around my house, driving me crazy, getting into trouble;  I have boys running around my house doing what all other boys do.

I embrace this and enjoy this more than anything, because even though it’s been pushed to the far back of my mind, I know there will always be what-ifs with Jameson.  Today a what-if became and now-this.

We finally had our follow-up appointment for Jameson’s sleep study that he had in February (yeah, don’t even get me started on that one) earlier this week.  I sent a copy of the report off to Dr. Fearon and heard back from him today.  Jameson’s sleep study showed severe obstructive sleep apnea.  We are not surprised at this.  We knew it wasn’t going to be great.  I had thought that the next step would be to have Jameson’s tonsils and adenoids removed.  But, gears have changed and we need to get Jameson on a CPAP as soon as possible.  Jameson averaged 47 apneas per hour and his oxygen saturation dropped to 50%.  If by chance (and there is a good one) that Jameson won’t tolerate the CPAP, he will need a tracheostomy.

Now, I say there is good chance he won’t tolerate the CPAP because my Jameson is stubborn and resistant.  But, we will do everything we can to give this a try.  I am not opposed to the trache, and as my mother mentioned, it’s less invasive than removing his tonsils and adenoids, and leaves him with his immune system in tact.  So, here we are.

All afternoon I have been processing my feelings.  I feel like I have been snapped back to reality.  We had a whole year to relax without worry, and in one fell swoop  everything changes.  Granted it could always be worse.  But here we are, about to establish another new normal for our family.

I don’t even really know how to explain what I feel.  From a medical perspective, I am completely fine with all of this.  As a mother, I am fine with the CPAP, and I would be fine with a trache.  I think what I am feeling has to do with how much Jameson is suffering and not knowing.  He puts on a smile, giggles, still loves to play, and gets excited about silly things any three year old would.  But when he lays down to sleep he is not getting rest; he is not getting nearly enough oxygen, his body –  his brain is not thriving.  Most adults would wake up cranky, irritated, and miserable. But Jameson, he wakes up and wants to snuggle, eat pancakes, and play outside.  This completely tugs on my heart.

Now, I could also be more emotional than I usually would from how stressful my life has been — I am in school full-time (kind-of more than full-time) to become a Respiratory Therapist; ironically enough, lol.

Don’t get me wrong I am grateful for the medical care we have.  We are fortunate that we don’t have to struggle with co-pays and out of pocket expenses.  But, I am so mad we fought for six months to get his last sleep study scheduled, I am so mad we waited two months to get results for a sleep study that was so severe when Dr. Fearon read it he called me immediately.  When I called the sleep clinic to get Jameson scheduled to come in and do what needs to be done to get on the CPAP they were closed for the day…

So, we will see what the process will be like to get Jameson situated.  If anyone has a small little one on a CPAP I’d love to hear about your experience, how did they handle it, what kinds of tips/tricks you might have to make it more comfortable for him.

Until next time…hopefully not too long from now 😉

Signing "I love you" <3
Signing “I love you” <3
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21 thoughts on “Today a What-If Became a Now-This

  1. I love your page and Jameson is absolutely adorable! I don’t know if this helps, but my friend used to role play with her son to get him into it. She started getting him used to it when he was awake. It was his oxygen tank so if he went scuba diving or while he was an astronaut in space. Then she had him wear it at night “in case he goes scuba diving or to space in his sleep, so he doesn’t have to keep coming up for air, he can play with the fishies the whole time.”

  2. Jameson is a wonderful boy and you’re a wonderful family! I’m sending you my love and support! Please be strong and know that you’re doing your best, I think you’re a best mum a child could have! Stay strong! Love from Serbia.

  3. Its always great to hear Jameson wakes up with a smile,my best wishes as always,your one tough loving Mother hang in there and stay strong.

  4. He is adorable and stay strong, wait until he is bigger and you will be surprised! Wish I was there to give you a big hug and tell you to stay strong and just go with the flow! All the best from me in Auckland New Zealand! xxxxxx

  5. Hi! I wish your blog was around when my daughter was born. She is now 26! I remember thinking I must be the only person to have a child with phyffier syndrome. What a whirlwind our lives were! How many doctor appointments in a week…a day?! But I wanted you to know that that is all a distant memory now. She graduated top in her class in college and works in Manhattan. I have the cranialfacial institute at NYU and Dr McCarthy to thank for that. Without her fabulous pediatrician Dr.Freedman it might have taken us longer to find help. If I can ever help… Just let me know.

  6. How is it possible to get a hold of this women? Rare to find some one to connect with that has the same diagnosis as my son…very moved by this article!!! Kayden2015@yahoo.com or Jeremy Smith on fb

    1. Hi Jeremy!! Nice to meet you. I stay active on hear as much as I can. How is your son doing? Not sure where you are located, we are in San Antonio.

  7. GBU you and your family and for your beautiful story. Jameson is such a cutie. We live in New Jersey and our baby girl was diagnosed at birth with Crouzon Syndrome and will be 4yrs old in October. It has been a very rough journey but we have faith and doing everything possible seeing good Dr’s and doing every she needs with surgeries to better her future. She is traiche, g tube and vent dependant but praying one day she will not need anymore. Would love to keep in touch and you have my email to do so. Will pray for our little ones. XOXO

  8. HI, I have a 15 year old son, Tysen who is has used a CPaP machine since he was 3. It was confirmed at a sleep study that he had severe, obstructive sleep apnea and they were not going to even release him, planning to admit him right away. We decided to try the CPAP right then to see if it would work. He really protested and I didn’t think it would ever work, but he finally got tired of fighting and drifted off to a peaceful sleep. We were sent home with the machine and said we could try it the next night and to bring him in if he wouldn’t wear it. It took a lot of ‘dealing’ and tears but he wore it and has every night since then. After the second night, we had no problem. He did have a trache, but he had a smooth trachea wall and it would not support the weight of the trache so had to be removed after 9 long months of complications and hospitalization.
    I would definitely give the CPaP a try, I really thought he would never tolerate it, but he did great. I would also recommend having his trachea checked if they are planning on doing a trache to make sure he doesn’t also have a smooth trachea. I haven’t heard that it is common in Pfeiffers Type 2, but I don’t really think it’s common enough to have literature on.
    Please feel free to email me if you have any questions, I’d love to hear more about Jameson.

    1. Linda, that is so awesome that he’s been wearing it for 12 years! Will be have to wear it for the rest of his life, of will be have any type of surgery to help correct his apnea? I am so happy to say that we got Jameson’s cpap three weeks ago, and he’s doing well. The first week was rough, he was up crying, trying to rip it off. But each night/week has gotten better. The longest stretch so far has been 9 hrs!

  9. Hi. Was wondering if it would be possible to talk with you in email? My daughter has pfeiffer syndrome and we are scheduled to see Dr. Fearon next month. I feel very lost with all the information we have received so far, I am hoping to talk with another Mom who understands or could offer some insight. We are also in Texas, up by Fort Hood. If you would like, you can email me at mrsdanilz@gmail.com. Thanks :0)

  10. Hi, My name is April. I just read about the people who used your son’s photo online on foxnews.com. Thank you. For standing up for him. I know it may see like nothing but second nature, but so many people would simply ignore it. I have been an advocate for children’s rights and spoken about child abuse and neglect since I was in high school, though I’m no expert. These people should be vilified. Your son is gorgeous and I applaud you for being a true mom 🙂 Take care of yourself and your family and know that my thoughts and prayers (for what it’s worth from a stranger) are with your family.

  11. Saw the ABC article with his photo. Such a sweet baby boy!!! Loved learning about him. Thank you for sharing your amazing son!!!

  12. Hola te escribo en español pues aunque entiendo ingles no se escribirlo. Quiero decirte cuánto te admiro como ser humano y como madre, ya quisiéramos muchas tener tu valor
    Es muy doloroso saber que existe gente tan perversa que puede utilizar a un niño como motivo de burla. Ellos sin duda recibirán su castigo , si eres creyente déjalo en manos de Dios y tú sigue adelante ya gozas de la simpatía y el cariño de quienes hemos leído tu caso
    Un abrazo y adelante
    Te escribo desde Ecuador

  13. Tu hijo es maravilloso… se nota su inocencia en su mirada… sigue luchando y te dejo un Link donde encontré la foto de tu bebé y decidí buscarte, no es justo que se burlen de el ni de nadie! En Twitter también encontré buscar niño pug en español y sale la foto de tu hijito. Cariños
    Mucha fuerza y éxito en este camino de ser mama

  14. What a precious little man! People can be so cruel, but stay strong. I know that it’s easier said than done, but you are his only line of defense against idiots who get their kicks out of making fun of someone who they don’t deem “normal”. Give Jameson a hug and kiss from me. Kathryn 😘

    P.S. It looks like you have not only Jameson but two other boys (?). If they like tractors, I’d like to send them all a toy tractor. My husband owns a tractor dealership that sells toy tractors, t-shirts, caps, and other things for kids.
    If you’re interested, let me know! 😊

  15. Well that’s what you get when you publish anything online. By now people should know there are de·vi·ants that will twist and manipulate anything for their pleasure.

  16. Hello Aliceanne and Jameson,
    Tonight I have spent time on the internet that I haven’t for a very long time.I was both happy to find your article and sad , due to the ignorance of people. If only they would stop and think
    ”Both for the grace of God, there go I.”
    There are no favorites in this world, we are all born equal, but some of us are more ignorant, stupid and ill informed then others.I have pity for them.
    Jameson is a beautiful soul, his face shows his beautiful heart and I am so happy to meet him if only on the computor.He is absolutely special, and you Aliceann are a avery special woman and mother. Only for this reason were you given this beautiful person to love and cherish.
    God bless you both, and he will be in my thoughts and prays from now on.
    I love you both and stand with you through this for as long as it takes.

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