Saturday, February 28, 2015

Medical Post of Actual Surgery

I will try to make this brief as possible and as reader friendly as possible. Please forgive any typing and/or grammar errors, sleep deprivation and anxiety are at a high!

As you may recall, the surgery was to serve three purposes: 1) allow Mia a way to give herself an enema so she won't have to rely on others to give her a rectal one, 2) allow Mia urinary continence(control her leaking) and a way to empty her bladder independently without having to use a catheter through her urethra and 3) open and possibly reconstruct a vagina. The fancy term for the new access to her colon is the MALONE and for the bladder the Mitrofanoff. Both procedures theoretically use the appendix to make a channel from their respective locations (bowel and bladder) to the abdomen. If the appendix is absent or not large enough, pieces of bowel are used to make those channels.

Upon opening Mia, all three surgical teams: Colorectal, Urology and OBGYN, evaluated how to go about all of the components of surgery in the best way possible to achieve their respective goals (and best result for Mia). The first few discoveries that were made were that Mia's appendix was too small to be shared as access to both bowel and bladder so additional bowel was going to be needed, her bladder needed to be made larger (augmented) and urethra closed off completely in order to achieve dryness and that her vaginal, uterus and fallopian structures were absent, however, she does have very small ovaries so hopefully hormone production won't be a problem later.

I hope you are with me so far!

The end result was this:
1. The Malone was created using a portion of her large intestine creating the channel out to her navel.
2. Her bladder was augmented using a portion of her large intestine as well. Her appendix was used to created the channel and outlet to her abdomen and the urethra was pinched closed.
3. They created a vaginal structure using small bowel seeing as they couldn't afford to use any more of the large intestine.

Having both bowels disrupted and in numerous locations means more recovery for Mia. She has three drains, two from her bladder and one from her abdominal cavity, extending out of her tiny belly. She has a large tube in her nose, called an NGtube, that extends down to her stomach and is suctioning out any fluids/secretions keeping it completely empty. She cannot take in anything by mouth until the stomach is completely cleaned out and her bowels wake up, which won't be for a few more days. In order to help her bowels to wake, we have to get her out of bed (our task for today). The sooner we can wake the bowels the better!

Forgive me for the length and complexity of this post. Many following are friends who can relate and possibly benefit from the medical portion, others, just may want to know. Anyone who may get offended has hopefully stopped reading and will pick back up on the next, not so medical, post which we completely understand!!!

Mia's post op has been very difficult on all of us, especially her. Her tiny body has been traumatized. The light seems so far and out of reach right now but we know there are so many of you praying and we will get there. Mia is having many ups and downs and I will not be posting all of those. Medically speaking, she has been very stable. Her heart and breathing have been successfully managed, she is currently fever free, her counts fluctuate but have been managed successfully. All of those things are extremely important! Pain management and anxiety have been tricky, especially anxiety!

Thank you all so much for your support. We still need so many prayers so keep them coming!

Thursday, February 26, 2015

We have her back!

As many of you know, Mia is back with us. I don't have too much energy left so this will be brief. I just wanted to update as promised. Mia did very well today! She tolerated 13 hours of anesthesia! The surgery was 12 hours long but Mia woke up asking us for kisses and asking to leave the hospital already. These next couple of weeks are going to be rough. One breath, one step at a time. Please keep praying!

Wednesday, February 25, 2015

Keep Those Prayers Coming

Well, I'm not going to lie, today was rough! Mia started the day with a walk and some smiles but ended the day with many tears. I don't have to go into detail for most to imagine how depleted she is right now and how sore her body is from emptying. She keeps asking how long we are going to be here and it's only day 2!

There was a steady stream of doctors from Mia's team that came in throughout the day. We went over everything in detail, signed a dozen consent forms and asked many questions. We know why we are here, we believe we are ultimately making a decision that will improve Mia's quality of life significantly. We have been planning, researching and preparing for almost a year now but tonight, at this very moment, it is so difficult to see that we are doing a good thing.

Unfortunately,  this probably was not the best time to update everyone because I am very emotional, however, it was my only time today. Tomorrow morning they will come to get Mia around 6:30. She will begin getting ready for surgery around 7:30 and then surgery should take place around an hour or so after that. The anticipated length of surgery is 8-14 hours. They will try to update us when possible.

Needless to say, we will need many prayers tomorrow! Thank you for all the prayers thus far. Kim, if you are reading this, I am remembering to "Just Breathe"! Thank you!

Tuesday, February 24, 2015

Still Smilin'

Oh Miama! She is such a tough little girl.  Mia's last solid food was last night around 8:30. Her morning began at 5:45am when we whisked her into "Same Day Surgery". After meeting an entourage of people, she sniffed the "silly stuff" that put her to sleep. She woke with an IV, PICC line and NG tube. Her only protest was a bit of crying upon waking. Once she settled, they brought her up to her room.

All day they have been "cleaning her out", which means nothing to eat accept popsicles, a whole lot of runny poop and stomach cramps. She has barely complained, other than when she had to leave the playroom because poop kept pouring down her legs. She even had enough energy to use her school robot and participate in class for a little while, do a bit of homework, complete some crafts and of!

As usual, she is everyone's best patient! More of the same for tomorrow. Clean out, clear liquids.

Sunday, February 22, 2015

A Quick Thank You

Tonight our hearts are heavy and full at the same time. With a very busy week of visitors, packing, shopping, cleaning, celebrating Sam's birthday and soaking up family time, I have not been able to send thank you notes to everyone. Please know that we are extremely grateful for the immense amount of love, support and generosity we have have received. I keep saying that, in a lifetime, we cannot pay forward as much as we have received! We will never stop trying but it is quite a task. Thank you for the cards, gifts, gift cards, thoughts, prayers and generous offers of help. One thing is for sure, we are so very blessed!!!! Our hearts and buckets are overflowing as we enter these weeks ahead.Thank you, thank you, thank you!

We will get on the road tomorrow morning and arrive tomorrow night. Mia will be admitted Tuesday morning at 6:30am. I will try to update the blog as often as possible. When we, hopefully, get a spot at the Ronald McDonald House, I will post the address.

Good night and thank you for blessing us in so many ways!
Love, Carleen

Tuesday, February 3, 2015

The Countdown Begins!

February 23rd. Time is moving too fast and too slow.

We have been chipping away at our list: hotel/ Ronald MacDonald House accommodations, work arrangements, tutoring and nursing to name a few. These are the things that leave us wanting more time. Not to mention the 8-14 hour surgery and Mia's long, painful recovery that we are dreading!

On the other hand, looming for almost a year now, is "the big surgery" that we just want behind us. To say we will breathe a sigh of relief when this is all over is an understatement! We are looking forward to the improvements these surgeries will bring to Mia's everyday life. The positive changes cannot come fast enough!

It is becoming increasingly difficult to push the anxiety aside. Since her actual "birth" day, this will be the biggest surgery Mia has had. It will also be the one that she will have to process the most and will remember the most. It will be the longest our family has been separated and the first time I will miss Samantha's birthday and possibly Nicolas'.

This weekend we will be telling Gabriella and Mia about what lies ahead. Given that next week is the last week before February break, we feel Mia needs time to say goodbye and come to terms with being out of school for close to two months. Thankfully, we have the best team ever at Plank North! They are sending us off to Cincinnati with a Robust Wireless Internet Robot (featured on the Big Bang Theory) that will allow Mia to log into class anytime she is up for it. She can interact with her classmates, teachers, support staff and even her sister! We are still amazed. It will be a blessing to have her connected from so far away.

Gabriella! As much as Mia is going to go through, Gabriella will be going through a lot as well. The girls share a room and do everything together. Gabriella gets upset when Mia misses a day of school. The last time Mia and I went to Cincinnati for a few days, Gabriella cried every night and couldn't sleep. Dave ended up sleeping with her to get her to sleep those nights. This is going to be such a long time for the girls to be apart.

As parents, we worry about all the kids! At the same time, we are so blessed with friends and family who continue to surround us with love and support. We know the prayers and constant support will carry us all through yet another mountain in our journey. We can never "pay forward" as much as our family has received. It is so incredibly overwhelming!

20 days! The countdown has begun!