The day I thought my child was going to die

I need to write this while everything is fresh in my mind, mostly for myself. I don't ever want to forget this day, no matter how horrible and gut wrenching it was.

This morning started off normal like every day. I made breakfast for myself and Nolan (really..it was a donut from the night before), and started Kaleb's tube feeding in his high chair. I sat at the dining table next to Kaleb, ate my cottage cheese while he had his g-tube feeding and some baby food by mouth. Everything was fine, Kaleb was happy...we were all happy, my husband was at work. Kaleb blew through baby food pouches and then I gave him some puffs. After that Nolan brought me what was left of his donut. I pulled some very small pieces off of the inside and fed that to Kaleb, nothing out of the ordinary. He had a few pieces and was fine. I gave him two more small pieces and continued reading on my laptop, about mental health in America (due to the recent shooting in Newtown, CT). I turned to see if Kaleb needed more food and he wasn't breathing. He chokes on food more than most kids but he always recovers, he coughs and cries and I freak out and think about calling 911...but everything is always fine.

This time was different. His head was hanging and his face was pale and mottled. I grabbed him and he didn't respond. I picked him up some (he was still attached to his feeding tube so I couldn't take him far) and he still didn't respond. I panicked. I unattached him from his tube (while it was still running...formula all over the place now) and ran with him in my arms to my phone. Snatched my phone up and started hitting his back, still no response...no air...no nothing. His eyes were open and looking at me but that was it. I tried to put him over my arm to hit his back more but he was so limp and heavy I couldn't do it for long. I called 911. While on the phone I put him stomach down on the back of my couch and kept hitting his back and shaking him. The operator transferred me to our local FD and that's when Kaleb came back to me. He acted as if nothing happened. He never coughed, took a deep breath, or cried. I was shaking and hysterically crying with the FD. They asked my nearest cross street and I blanked...I had no idea where I lived. He gave me options of cross streets and I was able to basically answer by multiple choice. I put Kaleb down for a second to put one of my dogs up and Kaleb crawled and acted fine. After I put my dog up I didn't let go of Kaleb. My 3 year old and I sat outside waiting for the FD, and they came with bright lights within 10 minutes.

At their arrival the firefighters and EMTs were more worried about me in the moment than Kaleb. They made me sit down in the living room and all I kept telling them was how sorry I was for my house being dirty. Who knows what I was thinking. They ran an EKG and o2 sats on Kaleb. He was basically fine...though they could only get his o2 up to 91/92...normal is 100. They asked me if I wanted him transported to the hospital...I fought with that. I said no, he was acting fine. They made me sign a paper stating that I didn't want them to transport him and I felt like an awful mother.

As soon as they left I called Kaleb's pulmonologist hoping it would be his actual doctor and not just an on call doctor we didn't know. Of course it was a doctor we didn't know. She was rude and said I should have called 911 before her. Okay, obviously you have a problem reading the history that I just gave to your operator. She told me to take him right away to the hospital.

I felt awful, why didn't I have them take him? I cried for my son and how terrible of a mother he had. Honestly, I know I'm a good mom, but in the moment I felt awful.

My husband rushed home and we took him to the hospital. While there the idea of this possibly not being a choking event came up, I didn't think of that. There has been questionable times of seizures though we have never had any results from his EEGS.

There's no way to know what happened probably, they have run so many tests and they all come back negative....

CT-still all the previous problems but fluid on his brain has not increased
urine cath- negaive
drug test- negative
RSV- negative
lung xray- negative
CBC- all levels were normal
EKG- possible arrhythmia...depends on what doctor you ask

You may have noticed that I said they gave him a drug test. Yes, without us knowing it...they drug tested him. Since I was in the child protection field I understand this in most cases, but they know him. They know he has a huge medical history. No...I did not drug my child and cause him to stop breathing. Because...lets be honest, they don't think he is on drugs.

The doctors spoke with Kaleb's neurologist and he agreed that Kaleb needed to have an EEG (measures seizure activity) while in the hospital instead of the scheduled one we have for January. They are actually going to do a 24 hour EEG so we will be in the hospital a couple of days. He will also be getting a swallow study, which he is due for...in all honesty I dread this more than anything. Finding out that Kaleb could no longer drink liquids in May was a huge blow to all of us...Kaleb loved his bottles. For months we had to hide food from him and couldn't eat in front of him. Today even if we had a snack...we had to hide from him. He has a fierce love for food and it would be a huge blow if they found he was aspirating solids. A part of me already knows what they will find and they will probably tell us he can no longer eat anything by mouth, but I still have to have hope.

Tonight I am at home with Nolan and the dogs and Dennis is at the hospital with Kaleb. I finally stopped crying this afternoon when I kept having to tell the story over and over again to doctors, nurses, techs, and even previous doctors that had once had Kaleb under their care and they were concerned so they came to visit. But as soon as I walked into this house it all came back. I just cried...and tried to hide it from Nolan. I was planning on coming home and going straight to bed. Instead...I cleaned. I did laundry and cleaned...took the trash out...everything. I even cleaned the toilets and cleaned each tile in my kitchen, on my hands and knees with a wet cloth. I don't know why I did that...maybe I'm crazy...especially at midnight.

Nolan: What are you doing mama?
Me: Cleaning and doing laundry
Nolan: Do you need help?
Me: No baby, just keep watching your movie but thank you.

I even cleaned the outer surface of each of our cabinets. Again...Nolan was confused.

Nolan: Mama, what are you doing?
Me: I'm cleaning the cabinets.
Nolan: Why?
Me: I don't know love...because they are dirty?

And really I don't know why. I'm not the clean type...but I needed to clean tonight...this morning. I even found a pool of formula in Kaleb's highchair...of course...I left his feeding pump on when I thought my world was falling out from under me.

I'll keep everyone updated and write even more later...tomorrow...there's more I need to get out. Writing is like therapy to me. Thanks to everyone for the prayers and the friends and neighbors that have offered and helped with Nolan. I don't know what I would do without these people.

Notice the writing next to, "Today's plan". I thought this was funny...so simple...yet something people take for granted every single day. 

ED fun

Nolan...eating crackers. He had to hide from Kaleb so he turned away to the hall so baby didn't see. Nolan...please know you are the best big brother ever.