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. 


Life Saver

As most know, Kaleb is feeding tube dependent for all nutritional needs. He can eat some foods by mouth that are thicker, however if they are too thick he will choke and on two occasions recently he stopped breathing for a short time. And I'd rather not experience that ever again.

Kaleb has always loved food and dearly misses his bottles. He has finally calmed down so he doesn't become hysterical every time he sees a baby or kid with a bottle. Thank goodness, that was a rough time!

With everything he has gone through he has shown how smart he is. He knows that his formula that used to be in his bottle, is now in his tube that hooks up directly to his stomach. Over the months that he has been g-tube (gastrostomy tube) dependent he has learned different ways to get the formula out of the tube and in to his mouth, which is a no no for Kaleb. He has learned he can open his med port (the hole where you put all medications) and suck out what's in the tube. Also disturbing is when there is no flow into his stomach he can open the tube and suck out stomach contents. Yeah...it's gross.

The past couple of weeks have been especially difficult because he has learned how to detach a part of the tube by biting on it a certain way and there is no cover for this area on the tube. We have tried everything. Tying blankets around the tube, tying wipes around certain parts of the tube, and even went to Lowes and bought cable keeper cords which fit nicely over the medical tubing...but my lovely child has figured out how to even pull that off. I'm at a loss for what to do.

Because of this Kaleb can only be fed by tube when I am right next to him to stop his chewing. Feeding him in the car was awesome but I can't anymore because most of the roads I drive on are highways and it's happened a few times where I have to pull over on the highway with cars zipping past us to I can stop his flow and clean up the mess.

The annoying part of having to be right next to him during all of his feeds is that his feeds take ONE HOUR to finish. His GI doctor wants him to have FOUR feeds a day...that is FOUR hours out of our day. Not to mention I have to keep his hands busy...I'm running out of things to do with him during these hours. What the GI wants really doesn't happen, ever...with the amount of time that has to be in between feeds and the length of the feeds...we just don't have enough time in the day. And don't even get me started on continuous feeds at night...not even going there. He does however get as much nutritious food by mouth that I can safely get him to eat, as possible.

Today I took a chance and tube fed him in the car...really I was desperate because he really needed to eat. So I tried to hide the cords as well as I can and even covered them with the cable covers from Lowes to make it harder for him to chew it...and then I had to pull over.

Pulled the cable covers off, coiled up the tubing....commence chewing. 

How much tubing fits in Kaleb's mouth? We are going for a record here. 

Sliding the tubing through his teeth...just like floss. Really, really thick floss. 

Oh and now we have dance moves with the tubing. 

I do believe his tubing is his best friend. Sigh....


No sleep for the weak

After about 45 minutes of never ending screams I had to wave my white flag. But I told Kaleb that if he was going to stay up, then I was going to take pictures of him...and lots of them.

Baby blues...

Who will I hit with the remote first? 

We are learning to not hit the doggy with the remote...be gentle.

Only posted this because it's a little funny that I was taking a picture of our stockings when the Raising Hope family were wearing theirs, festive I say! 

Before I got hit in the head for the first time tonight with a remote....

.....here's the second time. 

My now 70lb P U P P Y

Kaleb's favorite thing...books

....even if they are upside down. 

Love this little man to the moon....

And he loves his books. 

Basically as soon as he got out of his bed he was happy and smiley...and hitting me a lot. He fakes so well...I'm pretty sure he knows he can use his special-ness to his benefit. You little stinky butt, I'm on to you.  

[sn: Nolan has been asleep since 6:30pm... hallelujah]
[UPDATE on sn: Nolan is no longer asleep. Five minutes after posting this he came out of his room and will now not stop crying. Why do I put them to bed early again? Oh and now he just thew his cup at the dog...I must go rescue someone]


Kaleb has been pulling this thing for a couple of weeks now where he will cry and cry for hours if you let him at bedtime. It is driving me crazy! He can get out of anything pretty much because of his medical issues. With Nolan we really just let him cry it out...which in all honestly didn't happen that often. 

But now with Kaleb...could the crying hurt his heart? Did he pull his g-tube out? Is his leg caught? We have a camera right on top of him but the smaller things are pretty hard to see. Not to mention he chokes himself and it makes it obviously hard to breath for him...which breathing is already an "issue". We recently found a bump on the back of his head, possibly related to his hydrocephalus so this makes me worry even more. His neuro believes he may even be having migraine type headaches so if I let him cry it out...does that make his head hurt more? Ugh... 

It has only been 34 minutes and I'm pretty sure I'm going to cave soon. We both could use a good snuggle anyway. 


New Camera

I went ahead and bought myself a Christmas present...early. That's okay right? I bought a Canon t3 Rebel DSLR camera. It came with two lenses and I'm having so much fun testing it out. Obviously I'm no professional but I'd like to think I could be one day. So the learning begins...