Miss. Grace had a rough afternoon yesterday. It was an overly sensory day - her shirt itched, she had to wear two different socks, the rubber band in her ponytail was making her hairs hurt and on and on. It was not pleasant. She had a major meltdown before it was time for our special needs support group at church and she shoved our 50lb wooden bench over on the top of my foot in a kicking screaming foot and in the process taking off all the skin on the top of my foot. Oh joy, right? I was having to breathe deep and remind myself that this parenting thing is no joke. Even Cowpoke was quiet and keeping away from her and usually he is trying to help me calm her down. It was one of those evenings where I count the seconds until bedtime. Yet when I was rocking her before bed, after doing her therapeutic massage, she looks up at me and says, "I love you, Mommy." And my heart melts.
So 4:45 am came very early. Everyone who knows me in real life knows I am not fully functional until about noon so I was not running on all cylinders. Thankfully traffic was not bad that early and we checked in on time. Miss. Grace started hollering as soon as we pulled into the parking lot that she was not going to surgery. I just smiled and grit my teeth. We come to this hospital during the day to see our local GI but I guess she has not caught on to that yet. She only knows that early morning = procedures and anesthesia. We got inside and she went straight for the fire truck cozy coupe. It has these loud sirens and flashing lights on top. Of course at 4:45 am she was laying on the lights and sirens. Thank goodness for Gator because at this point my head was pounding.
And then all the sirens made the baby in the room next to us keep crying. I just wanted them to take the darn thing away but they didn't want to set her off. So in came child life with bubbles. . . .
Then came time to head to the procedure. We do not use vercid ("silly juice") as she has a hard time after anesthesia and vercid makes it 10x worse. She wanted me to take her picture with her unicorn to send to Daddy. I was about to take her picture when the OR nurse opened the door. Her face fell and the drama began. Today it only took 3 of us to hold her down and only about 2 minutes for her to fall asleep from the gas. Now my torso has the bruises to prove the battle. The pregnant anesthesiologist said she gets vercid next time and I said, oh no. That just makes it so much worse.
Gator and I went out to the waiting room where we observed lots of other people waiting for loved ones and friends. Oh the conversations you can overhear while in the hospital waiting room. Let's just say there are currently no ebola patients in Texas, there never were any ebola patients at this hospital and you cannot get ebola from having a routine colonoscopy. Now moving on . . .
Gator and I had just gone back to join her in recovery and they took off her oxygen and took out her IV. I was about to take her picture and her eyes popped open. Her pupils got really big and the screaming began. She was angry and she wanted out of there. She was hot and she wanted to lay on the tile floor. She wanted a Popsicle, but not that color and not from that nurse. She did not want the pulse ox taped to her finger or her toe. She thinks the oxygen mask smells funny. The bandaids and tape are hurting her. She wanted a cold wash cloth, but not the kind they had. The electric leads are "breaking [her] heart." She wants to hug Gator but he has bad breath and "his tongue is stinging my body." And on, and on, and on. It was over 90 minutes of kicking, screaming, hitting, hair pulling and head butting. Finally I told the nurse we have to get out of the recovery bay. You know there have been several days recently where I have felt like we have made major progress in her sensory processing disorder. Then we go through 24 hours like we have just had and I realize we are no where close to outgrowing this.
On a positive note her pictures of her esophagus looked good. The top of her esophagus looked better than it has since March. There was one questionable area. They took lots of biopsies. There was no yeast growth which is awesome! Because she takes so many steroids that is always a big risk. Because EoE is a biopsy based disease we have to wait to see what the biopsy results say. Those will be back in 5-7 days. We are praying for low numbers (less than 15) so we can keep turkey and corn and so we do not have to increase her steroid doses.
Thanks for praying my friends. I had so many text messages this morning and it was just a relief to know so many of you were praying for me and for Miss. Grace. This is a journey and sometimes it is exhausting. I am thankful that on the challenging days when I want to go back to bed and hide my head under the pillow that I have your encouragement, your prayers and your love.
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