Thursday, April 16, 2009

The People that Help me Heal!

So for the last 2 years we have spent a lot of time in the doctors office. So before I start I want to say a BIG Thank You to all of the medical professionals that have been there for our family along this journey. Thank You to all of the Doctors, nurses, medical assistants, receptionists, and billers..yes you too! As a mother it can be very intimidating to navigate the medical system. I am not going to lie and say that it has all been peaches and cream but looking back I have realized how truly blessed we have been! Finding good doctors has not proven to be easy but we hit the jackpot with our team!!

Even still, this part of caring for Makenzie can be..well... frustrating! There are so many different components that have to come together for all of this to work! Many times if you are not loud and persistent your child gets lost in the shuffle! I really do try my hardest to be kind and understanding but as Mama bear sometimes it is impossible! Makenzie has what she does because God has given me the strength and the knowledge to manage these systems. To understand what my daughter's rights and needs are and to advocate for her medical care! I do not take any credit for this as God is the one one strengthened me! I am taking care of God's precious treasure and hope that He is proud of the job I have done in getting Makenzie these much needed services!

We have both doctors at Children's Hospital and at private clinics.

Pediatrics

I want to start with the first and only team of doctors that knew Makenzie before her accident, her Pediatrician's. When my oldest son was born I spent a good amount of time interviewing pediatricians. (yes, I have been researching now for 12 years!)As a first time mom I wanted the best doctor to care for our very fragile baby that could get pneumonia from being cold after a bath. HAHA! If I only knew 12 years ago what I know today! I found a wonderful group of doctors at, Pediatric Pathways, that have started caring for each of my four children at just a few hours old! This group has stood by us through the last 2 years and has truly been God's hand in the form of doctors in Makenzie's life! They may not have been the treating physicians while Makenzie was in the hospital but they listened to me yell and cry for hours... on their personal cell phones! They called the hospital to talk to the staff and discussed some hard stuff with us when we were at the point when we didn't know if Makenzie would pull through! They advocated for our family through this process and continue to do that to this day. After Makenzie came home they helped me organize all of the doctors I would need. Currently they check Makenzie's weight. When she gets sick they are there 24 hours a day! They have even seen Makenzie in their office on Sunday mornings! Amazing! I have 2 personal nurses in their office that know my daughter inside and out! Any time I need paperwork filled out, prescriptions written, or orders faxed they do it immediately! They listen to me and never think (well at least not out loud!) that I am crazy! They respect my opinion! They know that I am in tune with Makenzie and that I understand her needs better then anyone else! They are willing to admit when they don't know something and have referred me to some pretty amazing specialists! I know that God led me to this practice 12 years ago for a reason! They are more then anything I could have ever asked for or dreamed about! THANK YOU!!!

Rehab

Makenzie is also followed by the Rehab Clinic at the Children's Hospital. Her doctor there is also wonderful! Some of the services we receive in rehab are, botox, medications, and braces. This clinic also fills out all of the paperwork on Medical Necessity for all of her therapy and equipment! Her rehab doctor is also very open to alternative medicine! We have had many long conversations about all of the treatments that I have researched and done! We talk about the pros and cons of each therapy. This doctor has also been a very awesome advocate for my daughter!

Gastroenterology

Makenzie has a GI doctor to over see her G tube feeds and nutrition. They handle treatment of her acid reflux and any kind of infection with her feeding tube site. GI writes Makenzie's prescription for her formula as well. They also monitor her weight gain to make sure she stays a healthy weight for her height. I also have a personal (OK so she is not just mine... but she knows what is going on with Makenzie) nurse in this clinic! We have nutritionist in the GI department that answers my questions about fluid intake and formula dosing.

Interventional Radiology

IR replaces Makenzie's GJ tube under fluoroscopy (x-ray) . Makenzie needs to have her tube replaced every 3 months or when it gets pulled out! Yes that happens! Usually this occurs on Friday at 5:55pm and requires a trip to the ER to have it replaced! That being said, Yes they come in and take care of my girly even on the weekend so that she can eat! WOW!

Special Care Clinic

The Special Care clinic, also at Children's, takes care of any of Makenzie's needs that are more then what her pediatrician deals with. Her doctor in this clinic is the one who finally gave us the go ahead on the GJ tube that proved to be the answer when it came to getting Makenzie to gain weight and stop throwing up! We have only seen this doctor a couple of times.

Home Health Care

All of Makenzie's therapies happen in our home. This is possible through a home health care company. They do all of the billing and insurance paper work! They are the ones (along with very thuro notes from her therapists) that have been able to continue to get so much therapy approved for Makenzie! WOW! I would say they have done a fabulous job!!!

We also have a separate HHC that delivers Makenzie's formula and feeling tube/pump supplies. They have been great!!!! We have ALWAYS had everything that Makenzie needs! They have been wonderful at communicating with Makenzie's doctors to get correct orders so that Makenzie has all of the right formula and supplies!


There is SO much more to the care of Makenzie but if I put it all in one place this post would turn into a novel! It is already coming close!!! Please check out the links on the right side of her blog for more info on her other services, treatment, and equipment!

I am honored to say that each of the above clinics and companies work with my daughter and have played such an important role in Makenzie's healing! Please pray for these people and places! Pray that God would bless their families and each of their clinics. They are such an asset to our community and most importantly, for our family, Makenzie! Thank You and God Bless!!!

Please look at the next post if you haven't already read about Makenzie's Speech/Aug Com Evaluation it is very exciting stuff!!

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