When Things Don't Go As Planned
This morning started like any other morning-
I woke up a little later than I should have, got dressed, got a bottle warming up for Mr. Sleepy-Pants and went in to wake him up.
I turned on his lamp and let him wiggle around a bit to wake up. Now, Little Man is a morning person- no idea where this comes from, but the kid wakes up bright eyed and busy tailed every morning- laughing, smiling and just ready to greet the day! This morning (and recently in general) he has been sleeping in more- which has caused me to start moving his bedtime up- which is fine with me! I debated just packing him in his carseat to take to Grandma Gina and not waking him, but for the sake of routine decided to wake my little man, there really is no better way to start your morning than with a happy baby.
While he was wiggling- I heard him tooting away. Then it sounded wet, and I decided to check his diaper prior to picking him up out of his crib to see just what kind of a mess I was getting myself into. I opened up his pajamas and thought that his belly button looked funny and about two seconds later it clicked that his tube was missing... it had fallen off during the night at some point and what I thought was gas was really air leaking out of the hole where the Mic-Key button should have been!
Now, in my mind, I knew all the things I should have been doing- but for the life of me I could not get my brain to convey those message to my muscles. I couldn't find my phone- I fumbled to get the spare button out of his diaper chest, I could not think straight. I finally found the phone and called for dad to come home NOW! I looked at his stomach and saw that there was no way I was getting a button back in, I found his emergency kit, lubed up the foley catheter and realized I was also not getting that in- not good.
My mind raced to surgery and overnight stays, something I am all too familiar with at this point. I had let Vienna the puppy out to go to the bathroom and she was not returning- I frantically capped up his bottle that was warming and tried to make a list of the things I needed to pack for this unexpected trip to the ER. Medical Binder, spare Mic-Key, extensions, meds, bottle, DVD player with movies, plug for the player, blankets, spare pj's and an outfit that didn't require snaps (just in case), headache meds for mom and dad and some gatorade to wash it down. The list kept going as I gathered everything up and waited for dad to get home.
As he pulled in, I noticed he had an extra rider- little Miss Vienna had travelled down the road and he picked her up and reminded her what happens when she doesn't come back when she is called. Thankfully dad was a little more level headed than me and we managed to get Caden changed, hole covered with gauze and packed into his carseat. At this point he is still happy and smiling away- having no idea what is about to happen.
At ER we got in quick- one because of what he has and two because it was just empty. The nurse cam back to look at him and the doc was soon to follow. He asked a few questions, looked at his belly and said he would be back with help. Another doc came in and she informed us that she would use two different tubes to try and dilate his belly since it had closed so much- the warning to all this was that surgery was a very real possibility. She barely got the size 10 in, with alot of lube and even more screaming from my poor little boy who had no pain meds and a daddy holding his legs and mommy holdinghis arms. She tried then to get the size 12 in and was getting ready to call it quits when Caden started getting so weary from crying that his belly relaxed a little. Then came the Mic-Key. She tried and tried and had no luck so the surgeon was called as dad and I tried to calm down our very sweaty, very unhappy little caterpillar. I tried to stay strong for him and hold back my own tears as the horrors of our previous hospital/doctor visits flooded my brain.
The surgeon came in and he tried, and tried, and tried some more. He was getting ready to call it quits and it *finally* went in. Caden was beyond the screaming point and so unhappy- he was drenched in sweat and all I could do was thank God that he cannot remember all of this. We took him down to X-ray where they put some fluid in his belly to check the placement and he was given the green light. I quickly fed him and got him some Tylenol (that I thankfully carry with me in the diaper bag) and packed him in his carseat for the ride home.
I had the list of people to call- the home medical supply company, his pediatrician and his surgeon. When I called the surgeon, they told me that he would be out of the office for the next two weeks and asked if we could come back in today- so we turned around and headed back. The nurses there were very nice and helpful and told us about the failure rate of the Mic-Key buttons being pretty common. Since this was the THIRD one he had in the past two months, it was pretty concerning that they were failing, especially the last one when we were reminded how close he was to another surgery! So they gave us a new button to put in him and said that they are switching to that style/ brand after all the problems with the Mic-Key. We finally got back home about noon and little man napped most of the day.
It would be nice to say that the adventure ended there, but that is never the case with us!
This morning, I got Mr. Squirmy up and was letting him stretch himself awake and I thought I heard air escaping- his button was there and in tact, so I breathed a sigh of relief. However, a few seconds later, the air noise came again, and it was complimented with bubbles and fluid leaking around the stoma in his stomach where the tube is! I went downstairs in a slight panic to get dad who was home and asked him to look. We decided to check the fluid level in the button, and we pulled out 1mL... now the doc put at LEAST 3mLs in not two days prior! We had YET ANOTHER bad button!!
I pulled the button out, replaced it with a new Mic-Key and left a message for the surgeon. I didn't want to put the new AMT in if it was just going to do the same thing- maybe he had strong stomach acid and needed a different reflux med- I just knew I REFUSED to continue doing this. After waiting for the doc to call back I finally got word that the Mic-Key buttons really do have a higher fail rate and the AMT should solve the problems. Everything is compatible and the only difference is that the AMT outside "button" is much slimmer and low profile compared to the Mic-Key. In teh meantime, I also put in a complaint to Kimberly Clark about us going through 4 buttons in two months. Now these little buttons are about $150.00 a pop! I just don't have a money tree out back and my insurance company is already loving me for my own medical issues, so this was not a good scenario.
Much to my surprise, I got a phone call from KC later in the day from a very nice woman with a sweet accent and she informed me they would replace what had broken and send me a FedEx pack to send the bad one back so the lab could look at it to see why they were breaking. Overall, a bad experience was made alot better by good service, now I won't USE the replacements they send me- I will swap them out for AMT's through my home medical supplier but it was still a good gesture.
So the adventure continues!
I woke up a little later than I should have, got dressed, got a bottle warming up for Mr. Sleepy-Pants and went in to wake him up.
I turned on his lamp and let him wiggle around a bit to wake up. Now, Little Man is a morning person- no idea where this comes from, but the kid wakes up bright eyed and busy tailed every morning- laughing, smiling and just ready to greet the day! This morning (and recently in general) he has been sleeping in more- which has caused me to start moving his bedtime up- which is fine with me! I debated just packing him in his carseat to take to Grandma Gina and not waking him, but for the sake of routine decided to wake my little man, there really is no better way to start your morning than with a happy baby.
While he was wiggling- I heard him tooting away. Then it sounded wet, and I decided to check his diaper prior to picking him up out of his crib to see just what kind of a mess I was getting myself into. I opened up his pajamas and thought that his belly button looked funny and about two seconds later it clicked that his tube was missing... it had fallen off during the night at some point and what I thought was gas was really air leaking out of the hole where the Mic-Key button should have been!
Now, in my mind, I knew all the things I should have been doing- but for the life of me I could not get my brain to convey those message to my muscles. I couldn't find my phone- I fumbled to get the spare button out of his diaper chest, I could not think straight. I finally found the phone and called for dad to come home NOW! I looked at his stomach and saw that there was no way I was getting a button back in, I found his emergency kit, lubed up the foley catheter and realized I was also not getting that in- not good.
My mind raced to surgery and overnight stays, something I am all too familiar with at this point. I had let Vienna the puppy out to go to the bathroom and she was not returning- I frantically capped up his bottle that was warming and tried to make a list of the things I needed to pack for this unexpected trip to the ER. Medical Binder, spare Mic-Key, extensions, meds, bottle, DVD player with movies, plug for the player, blankets, spare pj's and an outfit that didn't require snaps (just in case), headache meds for mom and dad and some gatorade to wash it down. The list kept going as I gathered everything up and waited for dad to get home.
As he pulled in, I noticed he had an extra rider- little Miss Vienna had travelled down the road and he picked her up and reminded her what happens when she doesn't come back when she is called. Thankfully dad was a little more level headed than me and we managed to get Caden changed, hole covered with gauze and packed into his carseat. At this point he is still happy and smiling away- having no idea what is about to happen.
At ER we got in quick- one because of what he has and two because it was just empty. The nurse cam back to look at him and the doc was soon to follow. He asked a few questions, looked at his belly and said he would be back with help. Another doc came in and she informed us that she would use two different tubes to try and dilate his belly since it had closed so much- the warning to all this was that surgery was a very real possibility. She barely got the size 10 in, with alot of lube and even more screaming from my poor little boy who had no pain meds and a daddy holding his legs and mommy holdinghis arms. She tried then to get the size 12 in and was getting ready to call it quits when Caden started getting so weary from crying that his belly relaxed a little. Then came the Mic-Key. She tried and tried and had no luck so the surgeon was called as dad and I tried to calm down our very sweaty, very unhappy little caterpillar. I tried to stay strong for him and hold back my own tears as the horrors of our previous hospital/doctor visits flooded my brain.
The surgeon came in and he tried, and tried, and tried some more. He was getting ready to call it quits and it *finally* went in. Caden was beyond the screaming point and so unhappy- he was drenched in sweat and all I could do was thank God that he cannot remember all of this. We took him down to X-ray where they put some fluid in his belly to check the placement and he was given the green light. I quickly fed him and got him some Tylenol (that I thankfully carry with me in the diaper bag) and packed him in his carseat for the ride home.
I had the list of people to call- the home medical supply company, his pediatrician and his surgeon. When I called the surgeon, they told me that he would be out of the office for the next two weeks and asked if we could come back in today- so we turned around and headed back. The nurses there were very nice and helpful and told us about the failure rate of the Mic-Key buttons being pretty common. Since this was the THIRD one he had in the past two months, it was pretty concerning that they were failing, especially the last one when we were reminded how close he was to another surgery! So they gave us a new button to put in him and said that they are switching to that style/ brand after all the problems with the Mic-Key. We finally got back home about noon and little man napped most of the day.
It would be nice to say that the adventure ended there, but that is never the case with us!
This morning, I got Mr. Squirmy up and was letting him stretch himself awake and I thought I heard air escaping- his button was there and in tact, so I breathed a sigh of relief. However, a few seconds later, the air noise came again, and it was complimented with bubbles and fluid leaking around the stoma in his stomach where the tube is! I went downstairs in a slight panic to get dad who was home and asked him to look. We decided to check the fluid level in the button, and we pulled out 1mL... now the doc put at LEAST 3mLs in not two days prior! We had YET ANOTHER bad button!!
I pulled the button out, replaced it with a new Mic-Key and left a message for the surgeon. I didn't want to put the new AMT in if it was just going to do the same thing- maybe he had strong stomach acid and needed a different reflux med- I just knew I REFUSED to continue doing this. After waiting for the doc to call back I finally got word that the Mic-Key buttons really do have a higher fail rate and the AMT should solve the problems. Everything is compatible and the only difference is that the AMT outside "button" is much slimmer and low profile compared to the Mic-Key. In teh meantime, I also put in a complaint to Kimberly Clark about us going through 4 buttons in two months. Now these little buttons are about $150.00 a pop! I just don't have a money tree out back and my insurance company is already loving me for my own medical issues, so this was not a good scenario.
Much to my surprise, I got a phone call from KC later in the day from a very nice woman with a sweet accent and she informed me they would replace what had broken and send me a FedEx pack to send the bad one back so the lab could look at it to see why they were breaking. Overall, a bad experience was made alot better by good service, now I won't USE the replacements they send me- I will swap them out for AMT's through my home medical supplier but it was still a good gesture.
So the adventure continues!
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