Well after being in the hospital unexpectedly for a week, and then having to adjust to the life changing surgery Brookie has had, it has left me with a huge case of writer's block. I decided I needed to give myself a break and wait until I could write about this experience in what I always try to do, a positive light. So here it goes..
On Tuesday, August 12th Brookie and I found ourselves in the Phoenix Children's ER. Brooke has always had terrible digestion and reflux issues and I believe that this was the seventh time in two years we had visited the hospital for acute abdominal pain. Poor babe, this time she was even more hysterical and miserable than usual.
Heart sick and frustrated I watched her go through many tests. The doctors were trying to determine the best way to treat her symptoms and actually help solve the problem, rather than giving her pain medication and sending us home. I was grateful for that. I decided that enough is enough and we needed a solution for my poor baby's pain! After carefully looking over her test results and records, the ER doctor recommended she be admitted and start a full GI flush. If Brookie's bowels became even more impacted it could potentially become dangerous and life threatening if they burst. It was something we just had to do.
I had no idea what was in store for sweet Brookie. Needless to say, we were admitted to the hospital, an NG tube was placed up her nose and down her throat
( my heart broke at her sad cries) and continuously for the next 4 DAYS she was given high doses of medication they give to colonoscopy patients. To spare you the disgust I won't go much further on this topic ( be glad ) but it was awful, painful, and just plain miserable. My normally happy girl cried on and off for days and was super uncomfortable. Isn't doing things we must do for our children's own good just so hard?? I wanted to stop the flush a dozen times but we just had to do it.
Thankfully, we were not alone during this rough hospital stay! Hundreds of texts and Facebook messages sending words of encouragement helped carry me through. I spent everyday all day in the hospital and the days are long and difficult. I sympathize with friends who have been in hospitals for months with their children. As much as I love Phoenix Children's and what an amazing place it is, it is still hard to be inpatient. Especially when you have other children at home.
Brookie and I sure felt the love though :). We had visitors literally several times a day. I was touched at those who made a special effort to come and see us and lift our spirits and keep us company. Ryan spent all day with us but he had to go home and take care of Jules and Audi. It was really stressful being separated but Brookie was always so happy when Daddy was with us.
In times of trial you definitely feel who is there for you. Brookie even had a very special blanket given to her by a very special person, Heather, with her trademark " Brookie the Brave" embroidered on it. That made me tear up, I love it so much!!!
Of course Brooke's most favorite visitors were her sisters and Daddy! She loves them so completely and the first smiles in days came when Juliette and Audrey came to visit!
When Brookie was diagnosed I was so worried about how it would affect Juliette and Audrey. Would they feel they missed out, would they feel bitter, would they be embarrassed or afraid of Brooke's disabilities. Well, God sent me very special girls to be big sisters. Truly they are wonderful with Brookie. They love her, they are proud of her and having Brooke as their sibling has made them very special little people. I am just so darn proud of these two. I am so fortunate Heavenly Father knew what He was doing when He sent them first to help me.
After the misery of the 4 day flush, the light and the end of the tunnel came. She was finished, all clear, time for a break! Oh did Brookie perk up!
A real bath came, first experience with Jello, the Pet therapy program stopped by, things were looking up!
Still, we weren't done here yet. Her GI doctor, Dr. Macomber, came to her room to talk with us. Totally inexpectedly he suggested it was time for Brookie to have a Gtube put in. My heart sank. A Gtube is literally a port surgically placed her her tummy where we attaching tubing onto and her formula, medications, and fluids can be pumped into. Thus far she has best the odds of ever needing one and this news really really hurt. So much of Brookie's life isn't normal, she can't talk, walk, participate in activities her peers can, even eat normally. Now this Gtube would be one more step in making her
" less normal." Selfishly I was very sad. We already get the stares now that she is in a wheelchair and wears leg braces, this is just one other thing for Brookie to face. It really is hard watching your child live life on the sidelines and miss out on SO much.
Now some people may think I am dramatic or not accepting something that would ultimately benefit Brookie's life SO much, but it was ok to let myself grieve this day. I was sad. She had just endured days of pain and now needed surgery. It was a rough day. However, like everything else we face as a special needs family we move forward. Surgery was scheduled for the following day. At least Brookie had an unexpected, unaware day of relief and was back to her happy self. If only she knew what was in store!
The following morning we were taken down to the operating room. Unaware of what was about to occur, Brookie sat up in the middle of her bed as she was wheeled through the hospital. She seriously was cheezing it up, the hospital staff loved it! She was like Miss America. It was pretty cute.
Thankfully the surgery itself is fairly easy. Brookie does well with anesthesia and everything went according to plan. The hardest part came afterwards. Brookie really was in a lot of pain. She could hardly make it between medication doses and was on some pretty heavy meds. The doctors think that doing the back to back flush and Gtube might have been a little much for little Brooke to handle. We stayed several days afterwards to help her recover.
Thankfully we had amazing friends and family supporting us and visitors to keep us sane. It had been a loooooong week. After being trained on how to use the Gtube, clean the Gtube, administer feedings, work the pump, etc etc over and over we finally after a week in the hospital were going home! On a side note, I personally think I deserve an honorary CNA license with all of the nursing skills I am learning as Brookie's mom!
Honestly Brookie sobbed the whole way home, and the first night home was hard. She was in so much pain and I wondered if we made a mistake coming home too soon. But, our big girls were thrilled to have Mommy and Daddy back and their little sis and we needed to be there. After a few nights sleeping in Mommy's bed and lots of snuggles, easy going days and pain medication, Brookie turned a corner. Our happy Brookie the Brave was coming back.
Thankfully we had time all week at home to help her rest, recover and for me to adjust our lives around her feeding schedule. It is really time consuming and for this OCD scheduler mom I have had to up my game on getting things done on time and being where we need to be. Brookie still drinks orally, so we have double the work and it has been a little stressful. Especially with the busy lives we lead! Oh somehow it will all work out. I do thrive under pressure so I am confident that day by day it will get easier.
Brookie is so glad to be home. She got to see some of her favorite people again.
And we gradually got back to our normal, I guess now new normal! Brookie even went back to preschool today and did great! Whoo hoo!
She still is not herself, much more quiet, less hungry, still cannot carry herself well. She is chatty but at times very mellow which is not our bubbly happy girl. I hope as her tummy heals, and her muscles are less weak that she will soon get back to being Brookie. The doctors said it can take a while for the soreness to go away so I pray it does soon! I miss her!
Now, enough of this somber post! I hesitated even writing it because my whole mission of this blog is to show that happiness IS possible when raising a special needs child. The doom and gloom of hospital stays and medical issues that come with our lives can be sad, even depressing. But you know what? I decided it is ok to have our days to be sad and letting others see that doesn't take away from our happiness. We are happy but, this is a hard life that we love so deeply despite the hardships. Without the rain we would not appreciate the sunlight. And having Brookie in our family is like having the sun's warmth shining on you constantly. She is such a sweet, tender spirit. That is why it was such a hard week to see her go through.
Still, trying times have been put in our paths for her whole little life, and I have decided our track record for overcoming them is pretty dang amazing. The quaint phrase " when life gives you lemons make lemonade " may sound trite but it totally applies to how we choose to deal with trials. I am proud of our little family and proud of Brookie. She is such a trooper. I am eternally grateful and ever proud of my beautiful Juliette and Audrey. They win the Best Big Sisters award hands down.
Isn't it amazing that you can look back at something so awful and heart renching and think " ok, I am alright. We are all right." That is where I am getting to. Almost there. In the meantime I thankfully have good friends lifting my spirits and encouraging me. And a husband and three daughters who teach me everyday what unconditional love is. That my friends, is worth it all. So forgive me for sharing a little sadness tonight, I promise the sun will shine brighter for us tomorrow. Still I can always remember one of my favorite quotes and smile
"Life does not have to be perfect to be wonderful." Amen!