It’s been awhile

It has been awhile since I have given an update on Nathan. It is always so hard to give updates as I feel like we are either very status quo or things are ever changing.  Right now, it feels like we are in an ever changing world. 

If I back up to the last update, he did great with his wisdom teeth recovery. Far better than I could have ever hoped for so that was wonderful. 

He has settled into his last year of “College”. While we are heartbroken that this is his last year, we are so grateful for the time he has had there. Every person he has encountered has changed him and I know he has changed everyone as well. 

Life has brought about challenges on many levels for us. There have been many changes with my Mom that have been so hard on my heart. I miss her so very much and it is hard to articulate the feeling since she is still with us.  We recently suffered a tremendous loss with the unexpected passing of Jay’s sister. 

After Jay returned from being with his family in Florida, Nathan became very sick with an upper respiratory illness. It was a week of sleeping with one eye open while he struggled to breathe through the coughing. He got an ear infection and was just very sick. I do not do well when he is not well.  I have always prided myself on handling stress well. Guess what, I no longer stand by that statement. 

Nathan has been having episodes of choking. At nighttime we do believe he is literally choking on his own spit. I will say there is no scarier sound than him gasping for air at 2 AM. He is also choking on water and food. He had a pretty scary incident during lunch at school that resulted in us making the decision that he will have g-tube feeds while there. He has had a few scary episodes at home as well so we are being extra careful. We did get a suction machine – which let’s be honest – that sucks (no pun intended). The Dr. also prescribed eye drops for us to put in his mouth that will dry up the extra secretions in his mouth. So we will try that but as with everything I am scared to do anything out of the norm. I get nervous to change anything with him as we have had so many bad reactions. 

We also have a repeat swallow study scheduled for January. There is always the possibility that his food and liquid need to be thickened more than it already is. The Dr. was not thrilled at the wait, but also cautioned me that there is always the possibility that we find out that it is no longer safe for him to have anything by mouth and we need to be prepared for that. 

We have a Speech Therapy appointment on Monday to go over communication devices. He has been working with one at school that has symbols that he feels and talks for him. They have encouraged this for years so that as his speech declines he will still have a way to communicate. We will go to Children’s Hospital and find out which one would be a good fit for him. His speech has declined so much that we feel it is time to work hard on that so he has a way to still be able to have a voice. 

This has been a time of feeling like we are in the middle of an ocean – during a hurricane – with no life jacket – while sucking air through a straw.   It has been hard. My anxiety has been through the roof, non-stop. I feel like my heart just races all the time and I cannot catch my breath. 

We need peace. We need a break from heartache and stress. The reality is that won’t happen and we know that. But some days it just feels extra heavy. 

Thanks for keeping up with us, it does mean a lot to know we have not been forgotten. 

Stacey