Saturday, May 22, 2010

The IV Pole

It is amazing to me how little things can bring back so many memories.

My boys were playing outside this afternoon and they had taken a few things out of the garage. One of them happened to be Makenzie's IV pole. I haven't seen that pole in over 2 years. Frankly I didn't even know that we still had it.

I stood there in my driveway staring at that silly medal pole as memories began to rush into my mind.

I began to think all the way back to the day the Home Health Care company brought that IV pole to the hospital. A man came with all of the supplies that we would need to feed Makenzie at home. He took the pump out and showed me how to hook it to the pole and then how to run the kangaroo pump that would feed my daughter for many months to come.

I remember stuffing that pole into my truck the day that we left the hospital. After staying in the hospital for over 5 weeks I had dragged wagon after wagon after wagon of stuff to my car. There were 2 seats left... one for me and one for Makenzie.

When we were discharged from the hospital it was time for Makenzie to eat but she was vomiting every feed so I put her in the car and would feed her when we got home.

It was my sons birthday the day we finally got to go home so I was greeted by not only my kids but also my whole extended family. I vividly remember how incredibly overwhelming that was.

I am not sure how many times that pump beeped before I got it figured out. Trial and error but it got done.

Then there are all of the memories from our trips to AZ. We left 10 days after Makenzie was discharged to start HBOT. We arrived at the Ronald Mac Donald house with one small problem.... no IV pole. I had not yet fed Makenzie without it. As with all things Makenzie, I was faced with a problem that had to be figured out. At the time it was a big problem... today I laugh at myself over that one.

I remember that beeping pump. Every time it tipped over it would beep. Then it needed to be re primed.... over and over and over! I remember priming that pump in nearly every parking lot between the HBOT clinic and the Ronald McDonald Resort and Spa.

Then after researching feeding pumps with the help of Makenzie's OT I remember the day they brought our new baby... the Zevex! This did not come easy. After many phone calls I found a home Health care company that would supply us with this new pump. A pump that did not need to be kept up right to run A pump that could be used on an IV pole but really didn't need one.

This is when that pole took residence in our garage.

That IV pole brought back many more memories of trial and error. Many memories of things that worked and others that didn't. Many trips to the ER and calls to the doctor at 2am. I remember laying on the floor in the middle of the night sobbing because Makenzie wouldn't go to sleep and continued to scream incessantly for hours! I remember being on the verge of bringing her into the ER because she seemed dehydrated and staying up all night pushing fluids to keep my little girl safe and healthy.

I picked up over 650 pages of medical records yesterday. I was flipping through them and realized that those legal pieces of the last 3 years of Makenzie's life do not even touch what it has taken to get her to where she is today.

It has been a long 3 years but a very rewarding 3 years. Makenzie is doing so well and not to inflate my ego but through God's grace and with his healing I have helped Makenzie grow into the beautiful little girl she is today.

So now for the slap in the face.

I got another call from my new friend on Thursday. She told me that she knew about our appointment with the GI to put the GJ tube back in. I explained to her that we were not going to do that but instead talk to the doctor and the dietitian about Makenzie's diet and how the G tube feeding was going. She asked me check back in with her after the appointment and then said she wanted to come back out next week to see Makenzie again.


I do not really understand why she is still calling. She talked at length with Makenzie's pediatrician. This doctor has been a part of Makenzie's care since before she was even born. The doctor told this person everything was going well and that Makenzie was a very healthy little girl. So why?

So I spent yesterday afternoon trying to figure it out. I looked online and found so many horror stories... I just sat and bawled. I called several attorneys and bawled some more. I called Family Voices and spoke with an advocate who has had personal experience working in the system and with my specific new friend... this made me feel a bit better but yet I bawled some more.

I would love to say that I am not angry but that would be a lie. I am still very angry at the person who started this.

From my reasesrch over 70% of all calls to CPS come from that source/the public school system. That source is one of the few people that I have ever in trusted my daughter with and they betrayed my trust.

What I find super disturbing is that not one single person from that institution has called to see how Makenzie is doing. They say she is a pleasure, she is very missed when she isn't there, everyone loves Makenzie, but yet not one e-mail, card, or phone call... Nada....I guess they accomplished one thing with this ridiculousness and that is to make their jobs easier. Way to go!

The frustrating part is that I will never know 100% who did this.... remember... this is an educated hypothesis on my part. There will never be any answers, no accountability, no resolution. There will be, for a long time, a fear in my heart around that institution. Makenzie is supposed to start Kindergarten next year but at this moment I am very grateful for the right to homeschool because I am leaning in that direction at this point. I will not be put through this because of ignorance and personal conflict again.

There is no reason for any of this. This person has NO clue what I have done to keep Makenzie safe. No clue how many tears have been poured into this and how much I know after doing this for 3 years!

I NEVER want to go back to the days of FFT and vomiting... NEVER! I do not need anyone to drag me into the doctors office and force me to do what they feel is best... I will RUN there all by myself if that time comes.

Today Makenzie is doing well and tolerating the G tube better then I could have ever imagined! Her GI doctor agrees and sees no medical reason to put the GJ tube back in. We are going to work on getting her formula perfected and gaining 1 pound in the next 3 months. There are no concerns from ANY of her doctors...

So the questions still stands.... Why?

Hopefully next week will bring some answers!

Believe... Prayer Works!

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