First Week Home After Gtube

This post was drafted two weeks ago, I figured I might as well share what is written for the slightest update, if it even contributes any....


Updates around our house should involve hourly updates.. bc i swear that's how often things change around here. The week has been difficult for the adults, but so much better for the little ones fortunately. Between my mother-in-law and grandmother taking turns watching Annabelle so I can work, I try to go home during feeds if I can or I walk them step by step via FaceTime. It's a challenge to say the least, but somehow, Belle is trucking forward!!!
Madelynne had a dance recital and Annabelle attended and just squealed with excitement for her sissy. I couldn't have been more proud of her on stage, she did absolutely perfect - to be honest, I was actually shocked to see how coordinated she was! This may be the kids calling ;)

I interviewed our new nurse Tuesday evening, and Wednesday morning was woken to a knock on the door - it was the nurse! I didn't expect her to show up to start the next day!! I wasn't made aware!!! I was so embarrassed, but we got thru it. Hey, this is my life lately - we move at the drop of a dime with little game plans in place beforehand.. and were getting pretty good at it too.


The day was chaos, I took my lunch break from work to go home and handle multiple meetings.

1. Dominion Home Health - more paperwork to complete for the new nurse i've just hired. Vitals for Annabelle and signing both our lives away to finally have someone full time in the home and traveling with us 24/7.
2. Bon Secours Home Health - Post-op followup to check Annabelle's site and change her tubey extension. Vitals, weight check (she's lost almost 2lb, but I expected that) etc. I asked the nurse about the stitch that was holding the button in place and if she would remove it for me. She smiled and truly wished she could, but she directed me to the Surgeon to have him remove it.. usually it stays in place for about two weeks. 
3. Child Connections - Speech Therapy
4. Occupational Therapist - Feeding Therapy
5. Did I mention that UPS and FedEx also chose this CHAOTIC time to make all our medical deliveres at the same time. 
6. Oh yes.... and from 930-1030 we had to show our house. During all the visits, I got a text message to show the home again from 330-430p, so once everyone was gone, I cleaned as fast as earthly possible and headed back to work. Amazing of a day it was, just incredible. 

 

The afternoon ended with my grammy and I doing some much deserved Starbucks, Christmas shopping together with Annabelle. In my state of depression and hating everything medical taking over my house, I decided the IV Pole was too ugly too look at and let Annabelle pick out the tackiest of tacky ornaments and decoration her little 2yo heart desired. If I had my way, it would look reserved, white lights, green garland and an occasional red bow with a spicy gold ornament. But this is Annabelle's and that child is a firecracker! She is loud, present and running around saying "HAPPY! HAPPY MOMMY! HAPPY!!" Let the kid have multi-colored neon decor and accessorize an IV Pole :) She loved it. She wasn't interested in the actual decoration aspect beyond playing with the scotch tape and stickers so Mady and I did all the 'hard work', we were very proud however of the finished project and so was Belle!

Thursday led to another day of every available extra minute to research what is wrong and happening to my baby. My instincts continue to tell me we need some answers fast. I am suddenly scared of my child and what I am feeding her. I wanted more than anything to be able to give her food and watch her eat again, and now suddenly I am terrified to fix her a meal of any kind. It's like a brick wall is in front of me and it feels dangerous to step over it. I don't know, it's hard to explain - the motivation is there though to work my butt off to find second opinions. My doctor is searching outside the country and I finally broke down and started calling in to all my online resources and message boards for some Genetic recommendations. As those began to flood in, I started filtering thru them. One doctor in particular continuously kept popping up. I wasn't sold on his specialties, but I found myself intrigued by his face, his department and the research he was involved in. I decided to take a snapshot of the guy and contact info and sent it to our pediatrician. She then reached out to the hospital, emailed him... and within the hour he called her.

He asked a series of odd questions, "does the patient have any Amish heritage?.. Can you provide more labs of ammonia levels?" During their conversation, the doctor made it clear that he truly believes he knows what Annabelle is suffering from. He has seen this pattern before in two individuals and if he is correct, and with Annabelle's history, finalizing our diagnosis and beginning treatment IMMEDIATELY is critical"

My doctor called me, she was a little confused, overwhelmed by the conversation she just had but wanted to communicate to me as fast as she could what we were potentially looking at. The doctor from Indiana University instructed Dr. Young to find a Bio-Chemical Geneticist immediately to gain the remainder of the diagnosis. So far, the labs we have are consistently meeting all the indicators for this disease. 

We finished our conversation both on the search for the nearest Bio-Chemical Geneticist (all I can think of is, "I wonder how fast insurance will deny this and how much it will cost me?"). Later that evening I missed several phone calls from my doctor - she was on the conference when I was able to get hold of her and she didn't call back until almost 11pm after they all finished discussing Annabelle's presentation and our glooming diagnosis. What is happening is very serious, more terrifying than I could have imagined and leaves little room for a promised recovery and a LOT of room for a miracle for our baby girl. I am devastated but trying to stay focused on the responsibility this leaves me with Annabelle and what we need to do next - to continue this fight the best we can. 

At this point we only needed two final labs performed and then we proceed into our next steps which will be:

1. Determine the amount of damage that is done to her Neurological System and Nervous System. 
2. Pray with everything we have that the damage is minimal and Annabelle can be considered for a treatment plan. 

I went to bed speechless, heartbroken and wide-awake in a daze. I don't remember sleeping, I definitely didn't dream and I don't remember thinking really. This was the first time I truly believe I have been 110% numb from fear and reality. Each time I attempted to do more research, I became sick and wanted to vomit. So instead, I laid in my bed, I watched the walls.. my dresser.. the clock and silently began to die inside. I was so numb. I woke up the next morning, or should I say, got out of the bed, and immediately called Dr. Young. I needed to talk to her, she had numerous questions for me too - we spent our night doing the same thing, research, pondering and questioning what was about to happen to Annabelle's future. She promised to remain the best middle man she could during this time and assured me the entire team in her office will find the best doctors and get these tests running as fast as possible. She called me back an hour later and gave instructions for where to go and an address for where we would be performing the labs. We drew blood, which Annabelle was a ROCKSTAR during and performed a Frozen Urine Analysis. 

I have to say, having a nurse with me in a medical setting, was seriously the best thing that has come into our lives in a long while. As I am handling insurance/payment with the receptionist, the nurse is with Annabelle and caring for her in the waiting room. As I am holding Annabelle to have labs performed, the nurse is assisting and supporting the technician doing the draw. I swear, it was seriously like another ME was shadowing our day. All I've ever wanted since this hell began was to be able to clone myself. And here we are, Ive done it thru this wonderful, selfless, loving nurse. I never ever want her to leave my home!!

Now. We wait. We wait for answers to the complete unknown and we try our hardest to look forward without breaking down.