We saw our sweet ENT last week for this little breathing issue Logan has had for a while. It seems to be worse when he is sitting upright in his chair, but we can adjust his head forward and a little to the right and it gets better. In fact, if we leave him sitting upright in his chair he continues to get more agitated, he starts twitching and has great difficulty breathing, but the moment we adjust his head it all starts to calm down and you can hear him taking calmer, deeper breaths.
The name for it - Laryngomalacia. It is basically a condition in which the upper part of the larynx collapses during inhalation causing airway obstruction. From what our ENT says it is fairly common, but usually detected earlier on that 15 months. It seems awful for Logan when he can't breath, but knowing that we can do something about it is wonderful.
Logan also developed a cold of some sort last week which took us back to the pediatrician. When Logan gets a cold, it usually means a chest xray, antibiotics and an ear infection. All were the case this past week and he has been miserable on top of it. After 3 trips to the pediatrician's office, a shot of antibiotics, chest xray, ear drops, tons of saline and syringing....we think he is over the worst of it. Thank goodness! This time seemed worse than in the past for some reason. He had a very difficult time breathing a few nights and his cough has been awful. The radiologist read his xray as a "developing pneumonia" but it looks like we caught it in time so it didn't develop any further.
But things still aren't great for Logan. It seems that lately he is either sleeping or crying and twitching. And when I look back over the last few months, I feel like a broken record.
So, we went back to the pediatrician today, they took some blood, talked to the neurologist and we have at least a short term plan.
They are going to check everything they can with his blood and make sure things aren't out of whack somewhere that we're not seeing.
We are going to reduce one of his meds to see if it helps with the sleepiness.
We have decided, although it is still difficult to say out loud, that we are going to put in a feeding tube. Logan has such difficulty with his food and meds these days. We are planning to start the Ketogenic diet soon and it's success depends on us being able to get a specific amount of food in him at specific intervals. Right now, that would be all but impossible.
We also have to have a urological surgery and the surgery to correct the laryngomalacia.
So the next few weeks involve doctors appointments to get him ready for the surgery that will include 3 different surgeries at one time. Planning for the start of the ketogenic diet and the adjustment of his meds to hopefully reach a stable place from which to start the diet.
We will also be doing a lot of praying. This is all in God's hands and I may feel crazy out of control with most things and wonder what to do next....but I know, without a doubt, that God has a plan for Logan. I pray for strength for our family to do what we need to do to execute that plan to the best of our ability to give Logan every chance and more. He deserves so much for all of the suffering he endures.
As usual, everything with Logan seems to overshadow anything else that may be going on in our lives, but we were blessed to be able to spend some time on the lake this weekend with Freddie! Nana and Papa pampered Logan at their house and he was so much happier because of it.
We had a great time with Freddie and really enjoyed having time with Fred!! Dee Dee is here too which is like the icing on the cake! Below are some photos from our weekend.
Thanks for all the prayers and encouragement!!!! I'll update more soon!
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