Tuesday, February 12, 2013

Braden's first medical scare...

The cAncer mess was not Braden's initiation into the "scary medical world",

It was my first initiation into the world of "The Advocate Mom".

This was actually a very important set-up for the cancer mess and how we would negotiate it.

I think God times things perfectly and purposefully, but this was an extremely frightening ordeal and the docs weren't sure Braden's was going to make it.

When Braden was 4 months old, he had a cold.  It kept getting worse. I had taken him to the doctor because I was concerned.

I really didn't get anywhere with Dr. Shanker, if I was a smarter person, I would have seen the foreshadowing and changed docs right then and there.

His cold got really bad and he was having a hard time breathing so I loaded both of the boys up (4 months and 21 months old) and took them to the ER.  Brian was buying his truck and got there as quickly as he could.

They admitted Braden into CMH South.

His sats continued to get lower and lower and he was really struggling. They had done numerous breathing treatments and even had him in an oxygen tent. I continued to go out to the nurses' station and tell them things were not okay and he needed help. They said that they wanted him to struggle a little so his body could learn to fight. Finally, the charge nurse came in (I knew her personally) and took my concerns seriously!

His sats got into the 60's and I began to lose my patience.  Finally, they decided to transfer him downtown so they could intubate him.  About 4 months after this ordeal, we met the Head Doc of the hospital and I threw these numbers at him and the learning problems Braden was having. He believed that Braden's apraxia (speech) was caused by that lack of oxygen. Awesome!

I went with him in the ambulance but they do not allow you to ride in the back with the child. I sat in the front seat and fretted. I had never been to CMH before and I wasn't even really sure where it was located.

We had to wait in the waiting room of the PICU for a LONG time and finally they came out and told us that  they had a difficult time getting a central line. I learned the term "fluffy" which is what they called Braden. :) It was a polite term for fat. :)  He was a portly little guy...his thighs were huge and he had BIG BIG chubby cheeks. He was sooo cute!!

We finally got to see him and once we got in, one of us was in the room 24/7 with him. When we first walked in the room, I was taken back by how similar things were to Miranda's set up. Heart monitors, warmers, a ton of other monitors, and that ocsillating ventilator that made Braden vibrate. That is a sound and feeling that is something you never forget.

The PICU is like Vegas (but a WHOLE lot less fun!!)...you cannot tell when it is night or day and there are alarms going off all the time keeping you awake. At that time, they only had a wooden rocker in the room and I used to sleep on that rocker with my head on Braden's bed. I did not go home at all, I sat by our son and prayed. There is NO privacy at all!! None..you live in a glass cage with thin walls.

They used to kick me out to take a break, and I would just sneak back in. :) You can't have food in the room, but I would sneak it in my pockets ( I refilled from our locker when I left for 2 minutes to go to the bathroom) and that's how I ate.  Shhh... :) I sat with Braden 24/7, sang songs to him (some we made up), and caressed his head and kissed him the entire time.

But, Braden wasn't getting better, he was getting worse and their interventions were not working. The docs were very worried and they had a very honest discussion with us.

We had heard enough "honest discussions" about reality and odds with Miranda to understand exactly what they were saying.

Many of our next door neighbors were getting better and moving out of the PICU, the little guy on one side of us had fallen into the ice in a lake and had been under water for 30 minutes before the fire fighters rescued him. The day we arrived, they told his parents he was brain dead. He woke up and was starting to talk.  No kidding! An article in the Topeka paper months later was sent to me by a friend showing that he was doing well!! Amazing!!

Then there were the rooms that went dark. One of those rooms had a baby in it that no one visited. The hospital volunteers came in and rocked the baby and held her but no one that appeared to be family ever visited her. Then her room went dark. That one haunts me to this day. I asked if I could go rock her but the nurses said I couldn't because you have to be one of their volunteers. I understood but no baby should die alone. I was so grateful that Miranda died in my arms. She knew we loved her for her whole life. This sweet baby didn't have that and that was more sad than I can ever explain.

The doctors had tried various things to help Braden, and he wasn't responding. One of the docs told me that he had "wimpy white male syndrome".

I have a definition of what that means, :) but I was curious what THEIR definition was. :) They said that white male babies fight the least hard of all the babies they get in the PICU.  I asked which babies fought the hardest and they told me that honor belonged to African American females. I can believe that!

SO...in an effort to fight "wimpy white male syndrome", I crawled into Braden's crib with him. I put his head on my shoulder just like Miranda's head was on my shoulder while she was alive and as she died and I told him that he was NOT going to get the same speech his sister had gotten. It was NOT okay for him to go to Heaven and rest. I needed him to fight. I needed him to stay with me.

About that time, the nurse (I like to call her Brunhilda) walked into the room and began to scream at me.  "what was I doing in that crib...had I touched anything...blah blah blah blah blah".

I knew my way around those lines after Miranda, but she had me freaked out too with all of that ruckus.  I got out of the crib and moved to the side of the room...she called in backup.  And they all scurried around the room checking everything.  The RT kept checking the monitors and it really was freaking me out!

I finally just asked what was wrong...had I done something to hurt him?

The RT had a confused look on her face and said that his sats actually looked stable, and even a little better! 

Hmmmm.... REALLY!?!!


Brunhilda left the room, defeated.  And I smiled!! :)

He continued to get better, we put him on a c-pap for 24 hours and then we were moved into a regular room 24 hours after that, 48 hours after that, we were home.


And then two months later, it happened again!

This time, Braden was airlifted from South to downtown.

When we got down there, he hadn't been intubated yet and the doc said that he was going to let Braden struggle a little so his body could learn to fight.

I said no.

I then told them that I wanted them to do a c-pap again so that he could get help up front and not get so weak that his life was at risk again. We were NOT going to repeat last time and we needed to give him support NOW so it that didn't happen.

And I was that matter of fact, except I was louder than it looks on this page!! LOL!!

The doc literally threw his stethoscope into the wall and stormed out of the room.  The RT looked at me and gave me the "uh oh" look.  She followed the doc out. She then came back in and started messing with things and I asked her what the plan was.

She said they were going to start c-pap.

Great idea!

And 48 hours later, we were on the floor, and 24 hours later, we were home.

We then began exploring why this happened and Braden was diagnosed with asthma. We started preventative meds when he gets a cold.  He's been in the hospital overnight several times but never again landed in the PICU for that reason...yup...there were other reason but not that one.

These two experiences taught me several things.

First, Braden is a fighter, he just needed to understand that he needed to fight! 

And I learned how to advocate and fight.  Doctors don't know everything and when you question them, tell them that. If you think they are wrong, fight them.

It's not like I'm going to invite them to go out to dinner so we can hang...they are there to do a job and I'm there to do fight for our son. We don't have to agree, but I am going to question (more like interrogate) :) and make them justify and defend every decision and action.

And when I think they are wrong, I throw my veto card..and say NO!  We have that right as parents. It's one syllable...NO!

Those lessons served me well in the next phase of the medical world initiation...Braden's diagnosis.

Tomorrow, I'll tell you part one of that diagnosis. It's an extensive one in which many mistakes were made and the diagnosis was missed for two months with me continuing to follow up and use my big girl voice to argue.

I learned even bigger, better lessons through that missed diagnosis and those lessons would be the perfect storm to create "Momma D" oh sure, the hospital and docs have other "more colorful" names for me but Momma D is MUCH nicer!!  LOL!!  ;)