Now that things have calmed down a bit, I think I can finally blog about everything.
I've shed more tears and gone more sleepless nights the last 2 weeks than I ever did when Kacey was diagnosed. It's a scary feeling to go 36 hours with no sleep and still function and wonder how you got through it. But I did! I had a serious issue with insomnia. I'd lay in bed and a million things would run through my head and I would have to get up and do something around the house. Being a Mom is NEVER a worry-free job and in order to take all the worry from Kacey, I had to do it silently! She never once saw me cry over this until she was being wheeled down to surgery. I didn't want her to think there was really something wrong. As far as she knew, Dr. D was doing surgery to take out a tumor that was keeping her from straightening her arm. It was better that way!
On Wednesday, we drove to Richmond (1.5 hours away). We had to drive right into the middle of the city...YIKES....talk about scary at night! We got the call from the hospital and they told us we had to be at the hospital at 6:30am. I had several questions and the nurse assured me I'd be able to ask them all in the morning because we'd be meeting with an entire team of doctors. ENTIRE TEAM?!?! Wow!
We were staying at a place they had set up for us called the Hospitality House. It's a place to stay while you have family in the hospital for procedures, surgeries and recoveries. They don't charge you anything to stay there but they encourage a $10 per person donation per night. How many other hotels can you stay in for $30 a night? NONE! The staff there were AMAZINGLY nice. They got us checked in by 8pm and we were on our way to the pedicatric floor. It just so happened that there was hardly anyone on the floor. Kacey had the playroom to herself. Frankie and I were able to crash out and watch TV for a little while before going back to the room for the night. Once we got settled back into the room, Frankie went on to sleep and I got Kacey tucked in and then the tears came. The fear of the unknown was in full force. I really hadn't explained all of the procedures to her because I didn't want her scared any longer than she had to be and I knew once we got to the hospital then they would tell her everything. So...I sucked it up and went into some detail about how the next morning was going to go. We talked about anesthesia and how it was going to make her feel and what could happen once she woke up. We talked about the pain. We talked about going into the OR and what recovery would be like. She cried. She laughed. She asked LOTS of questions! (LOL...she reminds me so much of me!) Around 11pm, she got one last sip of water and a small snack and then she was off to bed. Me, well...I sat up looking at the walls til about 2am. The alarm was set for 5:15am but I was awake long before that! We all were! So we got dressed and went on to the hospital.
As soon as we walked in, I heard Kacey gasp. There in front of us were a set of escalators. I couldn't figure out why she was so excited over them and then I realized...we don't have them where we live! She's only seen them on TV! LOL...yeah deprived she is! The receptionist was giggling and told her to go for it. So she and Frankie rode to the top and then back down. As she reached the bottom, she jumped up and down from the excitement.
Then...it was time...up to the 5th floor! When we got up there, it was already packed with people waiting. We registered in and within 15 minutes, we were called back! We walked through the surgical unit and we were greeted with so many smiling faces at 6am. As we walked into the small cubical they called a "room", the nurse told Kacey to put the gown and socks on and then she would be back. Kacey stood there in a somewhat state of shock. She leaned against the bed and immediately burst into tears. Was it something she said? What was wrong? I hugged her and asked her what was bothering her. She began to tell me about how being in that room reminded her of her diabetes diagnosis. I held her tight as she relived that moment in her mind. She was only 8 but the memories of PICU are so clear for her! I made her giggle when I picked up the pack of socks they had for her to put on. I asked her if she thought she could slide across the OR floor with skids? The socks had huge grippies on them...LOL! She got her gown and socks on and in the bed she went. Over the next hour, she was bombarded with doctors and nurses. Many of them asking the same questions over and over...but all of them concerned with giving Kacey the best care possible. She did indeed have an entire "team" that was focusing on just her! Having surgery is difficult enough...but throw diabetes in there and you have a whole new ball game! I'm sooo thankful that we had so many players :)
Most of my questions were for the anestesiologist. I wanted to be sure we were all on the same page with things. The most important question being...Can Kacey stay attached to her pump? Her simple answer...Of course! Now, anestesiologists are trained to put you to sleep and monitor you while you're under so I wasn't expecting her to know all about an insulin pump but she was certainly ready for a crash course...and thats exactly what I gave her! Within 20min, she knew what she needed to to get Kacey through the next few hours. I set a 20% basal decrease as ordered by her Endo. When we got to the hospital, her blood sugar was a 266 and then by the time she was getting close to go back she was a 186 with 1u of IOB. I knew she was gonna fall even more so it worked out perfect! We were also assured that during the surgery, they would be taking blood straight out of the IV instead of pricking her fingers and that way it was easier for them too! I breathed a sigh of relief knowing that she was in wonderful hands...not only one ansestesioligist...but TWO! One would be watching her while she was under and taking care of things from that end and the other would be managing her diabetes while she was under. How cool is that?!?!
Then....Dr. D came in...bright eyed and cute as ever! He was all smiles checking back over to make sure the "team" had done everything they needed to prep her for him. She held her hand and told her he'd see her soon...asked us if we had any other questions...and then he was off to prepare for her arrival. Within about 10 more minutes, they'd given her some meds to relax her but she was shaking and crying. Nerves! When she reached out for me...I'd choked back as much as I could! Frankie and I were both in tears. I knew she was in great hands but I hated to see her so scared and upset. They took her off to OR and we were sent to a window for a pager. If any of you have ever eaten at Applebee's then you know what I'm talking about. Those round pagers that vibrate and light up with little red lights? Yep! Those are the ones! Once surgery was underway, about 30min in, her main nurse called us to tell us that things were going smooth and she went under just fine and was stable. Originally we were told the surgery would be 3 hours and then she would spend an hour in recovery. So once we got that first call, we were free to roam the hospital for meals or gift shopping. I knew I needed coffee for sure! So we went on down to the cafeteria. About 2 hours later, the pager goes off. I freaked! We rushed back up and the nurse put us on the phone. As I was talking to her head nurse, Dr. D walked out. My heart shot up in my throat. He was smiling so I knew things were ok. I told the nurse that Dr. D was out and so she let him explain everything. He took us back to a meeting room and told us surgery went amazingly well! He found a place on her arm that he could cut so when he got inside he wouldn't have to cut through the muscle, he just parted it like a curtain. That saves for healing too! He took out the tumor, hulled out all around it to be sure it doesn't come back and then he filled it with bone wax. She would be in recovery for about an hour and then they would bring her back to the step down room for us to see her and then once she was stable there, we could go home! He was very pleased with how things went.
The next hour was the hardest of them all! I paced the floor until I heard them call us. We rushed back to an empty room. The nurse explained that they were bringing her from recovery and we'd see her soon. Within 5 minutes, she was back! She was all smiles and the nurse said as soon as she woke up, she said she was hungry and wanted to eat. Not a single bit of nausea or vomiting! YAYYYY! She'd captured the hearts of the nurses and had them all talking while we were waiting. We spent another hour in there and since blood sugars were great and she had eaten two popscicles and was ready for food...she was discharged! Talk about a sigh of relief :)
Once we got home, I got her settled on the couch. She went on to sleep again but around 10pm, the meds they'd given her had worn off and she was in a lot of pain! She had a precription for pain meds but they were only taking the edge off for about 2.5hrs and then she'd start feeling it again. So it made a longggggg night!
Today was a little better. She was still in a lot of pain but she was able to rest more. I was able to finally get her up to change her and give her a "bird bath". Today was site change too so once we got through all of that, she layed back down and she was out for the evening. I was happy to see her resting.
Blood sugars...well they were great for surgery but they've taken their toll the last few hours...hitting the over 500 mark...YUK! I'm guessing since she's laying and eating then there really isn't a choice! I've got tons of pics to share on Facebook and I will upload them when I get a chance.
Thank you all for your continued prayers...love...support...and kind comments on Facebook. I read them to Kacey today and she was so greatful for them all!