We were told that within a week Hailey would be having her pacemaker placed in Salt Lake City, Utah at Primary Children's. Prior to the pacemaker we all agreed that Hailey should probably get an MRI done. It's been 2 years since her last and to have an MRI done AFTER a pacemaker would have its complications. So we would leave on Sunday, take our time getting to Salt Lake and spend the night.
During our drive we stopped for lunch and while Josh ran in to pick up some food Hailey had her diaper changed and stretched her legs. Hailey had not been able to walk on her own for a couple of days. She was having ANOTHER ataxic episode. I think I've lost count now on how many she's had. I did know she hadn't had one since July 2014 and then before that January 2014. She told us she wanted to have her turn driving. She thinks it's so funny when she gets to sit in a regular chair and not her car seat. So while Josh was inside and the car was parked we moved her up front to "drive" She had such a smile on her face! #SimpleThings
HERE. Eliza was a little girl with Metachromatic Leukodystrophy and she loved books. You very rarely ever even hear the word Leukodystrophy but because of Eliza's wish and library so many more people will learn about it. #Amazing!
In the end it only took about 45 minutes which was nice to be surprised and not having to wait that extra 15 minutes but that surprise had also caused me to think, "why are they calling us so early?" The procedure itself went well. Her heart beat did drop a few times in to the 30's but her blood pressure was always good. They never had to interfere. She was awake when we went into see her. She was sitting up and she was crying asking for me. I could hear her as I came around the corner. We gave her hugs and kisses. The nurse in the recovery had orders to discharge once Hailey's numbers were stable, but with her heart needing a pacemaker, Hailey would never be stable with her heart beat in the 40's and 50's. To be stable it has to be at 60+
Hailey just wanted to snuggle her dad while the nurses did what they needed to and take their notes and watch Hailey's numbers.
He said that they would put Hailey under general anesthesia again and then the first part of the surgery will be to test veins and Hailey's blood pressure and decided which way will be the best and which vein would be preferred. Then the second part begins. They would thread leads through the vein in Hailey's right groin all the way up to her chest. They then make an incision on Hailey's chest to place the pace maker and plug it all together. Once it's working they screw the leads to the wall of her heart to make sure it stays in place. The surgery should be about 3 1/2 to 4 hours all together. He even showed us what it would look like. I thought it was HUGE. I was thinking it'd be the size of a quarter! It's closer to the size of 1/2 a credit card and as thick as 2-3 quarters stacked. (Side note: I may be over dramatizing what it actually looked like...so I've been told...)
I was kinda shocked. I didn't hear anything about threading leads through her groin or screwing anything to the walls of her heart when I talked to the cardiologist!! It's too late to turn back now though. The surgeon was great though. He answered all my questions and calmed my worries to an extent. Surgery would be at 8 am the next morning.
I decided I needed a shower. They just recently opened a mini Ronald McDonald House at the hospital. It is truly a great place to have access to. They have showers and they provide the towels and anything you need from soap, to toothpaste, to shaving cream and razors. They also have napping rooms. You can sign up for a room to take a nap in while your child is in surgery and it's a bed that's is quiet and dark. They also have a full chef's kitchen that has a pantry with things for you to cook so you can have a hot meal without having to spend money in the cafeteria. They have computers for you to email or you can just sit by the fire and watch tv.
At the 3 hour mark I assumed they would be paging us to tell us it's nearly over. The pager didn't go off but my phone rang. It was the tech. She said that Hailey is fine but her veins are spasming to the point that they can not thread the leads. She said the plan is to first wait. Giving the veins some time to stop with the spasms and then proceed. If that doesn't work they will try medication. If that doesn't work they have to start over again on her left groin. She then said it'll be another 3 or so hours depending on the veins. UGH! I couldn't catch my breath! What happened? This is suppose to be easy. They never told me this might happen! So we just have to sit and wait...It felt like forever.
Finally we get another call. They threaded the vein. They just had to wait it out. It'll only be another couple hours. We wait and wait and then another call. It's done. Hailey is doing great! We can come see her in recovery. I thought she'd be super out of it but she was pretty awake and cognitive. She was looking around and naming the pictures painted on the ceiling tiles. A 3 1/2 hour surgery turned into 6 hours!
I've never been so happy to see this cute face! I think she's giving me stink eye!
At the Ronald Family Room they try to get people to donate dinner every night so parents have a hot meal. This night there was no volunteers. No dinner for the families that were there with their sick children. Josh's mom took dinner on all by herself. She made spaghetti for the whole Ronald Family room that night complete with dessert, brownies. She even purchased some chicken and sweet potatoes and had those available. Josh stayed with Hailey while I ate and then we switched. That night the doctor assured me that Hailey's alarms wouldn't go off and that I should get some sleep. Grandma Brenda stayed with Hailey and Josh and I went down the street to the Ronald McDonald House to sleep. I don't even remember falling asleep but I slept the whole night.
We had our alarms set to wake up and get at the hospital by 7. I know that 's when the nurses switch and then the doctors do rounds shortly after and I wanted to be there for that. It was SO COLD that morning. It think the high was 19 with snow on the ground. This desert rat was freezing. I couldn't even take a photo without shivering!
We had a few things we wanted to do. 1 thing was collect toys to be donated to the hospital so that other children could benefit. This was a fun project and Hailey loved helping with it. She would see a toy in the donation box and tell me it was for a friend she didn't know yet. I called the hospital rep and she came up and thought it would just be a small box of toys but it was way to heavy for her to carry so we asked Josh to carry it for her.
The hospital rep came back with a Thank you note for Hailey for donating toys. It was very nice to get the note.
Josh and I weren't agreeing on everything and if I told Hailey not to lift her arm up he'd shut me down by telling me that what she was doing was fine, it didn't go up all the way. I'm being too over protective. I wasn't going to win if I started a fight because I believed I was in the right and he believed he was right. There were times where it was just too much to handle and I felt like a needed to get away just to cry. I didn't want Hailey seeing me cry but I didn't want to leave her with Josh in case she wanted me. I was down at the kitchen in the Ronald House and someone asked me how I was. Just in general. I don't think she really wanted an answer, she was just being polite. Who knew that her, "Hi! How are you tonight?" would turn into me SOBBING about feeling sad and anxious, and confused and I felt alone.
I was hoping that when I got home I'd feel better. I didn't. The anxiety wouldn't go away. I've never cared for a child with a pacemaker before. What if I mess up? Cleaning her wound was not something I wanted to do even though I knew I must. Josh was going to go back to work and it was just going to be us and I didn't know if I could do it. I didn't want to tell anyone how I felt, because I didn't want to hear, "oh, you'll be fine! Don't worry!" How do you know i'll be fine and don't tell me not to worry. I had thought that my friends back home would call to see how I was doing or ask if they could bring dinner when we got back or just sit with me if I need them, even offer to take me out of the house. That never happened. It was pretty sad. I totally thought I had more friends here in Vegas. The ones that reached out were all from afar. I can't dwell on it anymore but I also can't forget about it either.
Hailey is healing so well! She was never in pain. It was more of a discomfort. She never needed more then Motrin. She has begun to bare weight and take steps again!! I hover over her because falling is always an issue. She has until March 19th to not pull or push or lift with her left arm and I think I remind her of that 20 times a day. LOL! The one thing you tell her not to do is the ONE things she must do!
She saw her scar in the mirror the other day and asked if she was all better yet. I told her, "yep! all better!" She didn't like her scar but it's just another part of the story. I read that scars tells stories. She is smiling and she is happy. I know I'm repeating myself when I say, we want to thank everyone for following along on Facebook and posting comments and well wishes for Hailey. I want to thank all the other moms that left me messages and emailed me. All the wonderful care packages were very much appreciated.
It momentarily took away from the stress of wondering or even fathoming how much this is going to cost or how we will pay for it. I think about it and I worry.
We are still going to try and make this year a great one for Hailey. We know it started out rough but it's only February. Once we are done with what seems like weekly doctor appointments and 2 more trips to Utah before April we need to do something as a family away from hospitals and doctors. Hailey's 7th birthday is coming up in May and she has been talking about it non stop. Every few minutes she'll say, "when I'm sebin..." (she can't do letter V sounds) it's pretty cute. We started back at Therapy and the grandest of all is that Hailey was released to go back to school! Oh happy day. Hailey loves school. The worry I have that I'm not there will never go away though.
So that's the story. The one thing I want to add if you didn't catch it was that the whole time we were at the hospital not once did a neurologist come in to tell us the results of Hailey's MRI. Our cardiologist said that all she read was that Hailey's disease was progressing (which I think we knew) I'm currently working with Hunters Hope to see if they have a neurologist willing to look over Hailey's MRIs and offer insight. More on that later.