Friday, May 8, 2015

Lots of sleeping, crazy rashes, fevers and doctors appointments...

I've been trying to keep everyone updated on Grace. Really, I have.  I've received lots of calls and texts asking how she is. I know I'm doing a poor job at updating. Thank you for continuing to care about her. It has been a long week at our house. There has been a lot of this....
 and this...
 and more of this...going on at our house.
Not only by Grace, but myself. We have spent a lot of time in my bed together sleeping. I wasn't going to share about me. I don't need pity or meals or "Poor Andees" or anything of the sort, just people to laugh with me. By Monday afternoon I was still wearing the same thing I came home from the hospital in. EVERYONE in my house bathes EVERY DAY. This is just how we do things, so me still having the same clothes on from Saturday should have been a sign something was wrong. I wasn't quite sure why I was so tired. I figured it all had caught up with me and I finally broke. I couldn't keep my eyes open, my body hurt, I had a low grade fever and I felt like I had been kicked in the chest. We kept trying to get out of the house, both of us. Monday my mom came and got us all up, showered and fed. Jeff has taken us for walks and sat us out in the front yard to enjoy the nice weather.  We've tried to be upright. Grace is doing great! She is doing wonderful with her walks, and meds and O2 levels. I think if I let her, she would probably run. She likes the tank on wheels, that way she can pull it herself and control our pace.


We have been dealing with a yucky rash and fever. The rash started on Thursday before we came home. The nurses guaranteed me that it would be gone once we got her home and cleaned up. We did what they told us and the rash continued to spread. It covered her neck and up her ear. She didn't itch and it didn't seem to bug her. I had my brother-in-law, who is an IHC physician, look at it. He gave us a steroid cream to put on it. A couple days later it hadn't touched it and it had still continued to spread all over her whole trunk. The steroid needed time to work, we didn't have time to wait for it.  We really needed to know what was causing it. The surgeon's nurse practitioner called to check in on her and I told her the rash had spread. I wasn't worried until she told me she was worried. She asked me to have her seen again.
Luckily, Wednesday morning I was able to get both Grace and myself in to our doctors on cancelled appointments. Gracelyn's doctor wasn't happy about the rash either and wasn't sure what it was. He made us an appointment for Thursday with a dermatologist in the hospital.  I ran straight to my appointment to find out that I have a strange case of mastitis. She didn't feel it was a straight forward case. I don't even know how to be sick. It's been years since I've taken anything. Moms don't have time to be sick.  I have a seven month old that I am nursing. I've nursed all my children to one year and didn't want to have to quit nursing her because of the surgery. I brought my pump with to the hospital, but didn't do a great job at doing what I was supposed to. It was too hard to leave Gracelyn to do it. My parents would bring our baby down often so I could feed her. I was afraid I would lose my milk or she would want to stop nursing after being bottle fed.  They prescribed me some meds and asked me to report back in a week. The diagnosis made sense why I was feeling so crappy. Jeff picked up my prescription and I took it around 6:30. By 9:30 I was covered from head to toe in hives. I had a reaction to the drug. I left my house to find a nurse friend, when my doctor brother-in-law passed by me driving. I flagged them down and he told me what I needed to do. Those in my neighborhood may have heard me laughing about the situation, I laughed so hard. Not sure what else to do at this point. Like I said, I don't need pity. Just laugh with me. It's kind of funny. We got me on a new med yesterday. I feel 100 times better today. That's the end of my sad story (now you know why we disappeared), back to Grace. 
We saw the dermatologist yesterday and she is convinced that it is a reaction to whatever was used to clean her before surgery. She feels like the lines are too defined. The dermatologist wants us to try keep trying the same steroid cream my brother-in-law gave us for two weeks and pray it goes away. Yesterday I noticed that the rash is starting to change color where it first started. I hope that's a good sign. Her fever also broke yesterday....Finally!

So, aside from a lot of sleeping, crazy rashes, fevers and doctors appointments, we have been doing fantastic. :)  Monday morning and today Grace was able to FaceTime with her class. She's has a lot of fun seeing her friends. She was given permission to go to her class program next Friday and she needed to start practicing her songs and parts. She has the best teacher!
This is my favorite picture from this week. I took this Monday at 3:00. After I took it I realized we were exactly one week to the hour of when she left the operating room. She looks fantastic. She loved getting her hair washed and curled. She's a tough girl!




Monday, May 4, 2015

HOME!

Of all the posts I will EVER share on Gracelyn's blog, I am pretty sure this will be one of my favorite. Those that have followed Gracelyn's journey know that this surgery was one of my biggest fears. It wasn't the surgery itself. We've done heart surgery twice before and I knew we could get through another. It is just everything that follows. Having a single ventricle heart has it's complications. It scares me. Also, once she starts having complications again, there isn't another "fix." There are things to help along the way, but if her fontan fails and things go south, a heart transplant is our only option, and it's not a guarantee. Having said all that, now that we are done with the surgery part of things and on to recovery, I really feel great about Grace. My mommy heart feels like she is going to do really well with her new heart structure. 

There isn't much to say. The pictures will speak for themselves. I do, however, want to thank our families for making such an awesome homecoming for Grace. Grace and I had no idea what was going on. Once Jeff let us know all the decorations in our neighborhood were for her I began to film her. She was really excited. She kept saying "They are everywhere. " (I've only posted part of the video, it's too long and won't let me post it all. ) She was super cute when she realized what was going on. Most of our family (on both sides)  live with in blocks of our home. They were all there. The cousins were at the corner and they ran down the road with us as we drove. The yard was filled with hearts that had messages from family and friends. There were balloons everywhere and the entire neighborhood was covered in pink ribbons. My parents live a few streets over and even their road was pink. It was very touching. As we drove Grace around to see the ribbons, my darling 3-year-old said, "Dis is all foe you Dracie." Her Aunt Camee had thought ahead and bought hearts back in February during all the Valentine's sales. The fence, door and her bedroom were decorated with those. There was an awesome Welcome Home sign made by another Aunt Cami. All of our family had their names written on it. We loved it! Jeff's three sisters, Tara, Val and Hilary were responsible for all of the balloons and hearts in the yard. Thank you to all of our friends and family who helped with her homecoming. It was wonderful...for ALL of us.
video



We walked Gracelyn around the yard to see all the fun hearts. We couldn't hold her back at times. She was making me so nervous. The NP stressed that she was to not do much more than walk for the next six weeks. Even swinging on the swings is not okay. We chased her around the yard with her oxygen tank. At one point she even jumped off our front steps!! Wish us luck! It's going to be a long six weeks entertaining her. Jeff feels like, even though she only had surgery a week ago, she is feeling more energy than when she went in on Monday.



I'm glad to be home, not only for Grace, but for her siblings. This little guy did great with my parents, but he is such a mama's boy. He didn't let go of me Saturday.



It was so awesome to watch Grace walk around the yard, dragging her own O2 tank, less than a week after major open heart surgery. As a heart friend said, "Nice job on making the Fontan look easy." :)




It was so awesome to look out our back door and see even the neighbors back yard with ribbons. They knew we'd see it from our house.

I think she may have over done it at her "Surprise Party," as she called it. We tried to have a picnic out side for dinner and she didn't last 10 minutes. We couldn't find her and so we followed the O2 cord. She had put her self to bed. It was so nice to be home, with everyone under the same roof.

Sunday, May 3, 2015

Day 6

We woke up expecting a pretty uneventful day.  Our surgeon told us on Friday that we would look at going home on Sunday or Monday. He said that they want to keep the fontan kids there for at least a week, just to avoid any problems that would cause them to come back. They took us down for x-rays extra early today. I held her in the wheel chair since she could hardly stay awake to sit up on her own.
We came back around 4:45 and were able to go back to sleep. Grace slept in late, it was 9:30 before she woke up. She woke up to a great surprise,  her cousins and aunt came for a visit. These girls always make her smile. They brought her a great gift, an itunes gift card and magazines for mom. It will help so much over the next six weeks as we attempt to keep her down. 
She had another very healthy breakfast...French fries and nuggets. Didn't really matter because she didn't eat much of it. 
It wasn't too long after they left that the doctors rounded and gave us the great news.  They told us that they would be sending us home. They were concerned with her eating, but felt like she may do better with it at home. They wanted to get her home to start healing. It's hard to get much rest when you are being checked every four hours. We couldn't have agreed more. Only problem was that we were stuck at the hospital. We didn't have a ride home.  My little guy had a soccer game at 11:00 and everyone had stayed home to watch.  She quickly made a phone call to her dad to let him know. 
We also made a video message to send to our family and friends.
video

 While we were waiting for daddy we had another visitor. Our friend Tara came for a visit. She brought Gracelyn some things to make bracelets. The two of them stayed busy doing that while I packed things up.
Finally daddy showed up and began loading the car. We kept joking we would need a Uhal to get home. We at least had room for the three of us to get home. It took severals trips to the car with two wagons. All the other parents were congratulating us as we were walking out. They knew what it meant to leave. We walked out of the building with one of our loads and I lost it. 5.5 years of waiting and it was finally over.  It was very overwhelming.
We loaded the last things in the van and went back to the room to get our girl. We had a minute together alone, said a quick prayer to thank Heavenly Father for all his blessings and headed home.






Saturday, May 2, 2015

Day 5

Today was a very uneventful, low stress day for us (and almost a fun day for Miss Grace). Overall everyone is still thrilled with how she is doing. Everything looks great. Today we simply tried to get her to eat, drink and pee. We were back up at 5:00am for x-rays and since we stayed up late watching My Little Pony, we were both exhausted. She came back to her room and went back to sleep until her surgeon stopped by to check on her. He is very happy with how she is doing. I was so scared to ask for picture of her and him, but I knew I would always regret it if I didn't. I was brave! She wasn't even awake, but I didn't care. I was nervous we wouldn't get the chance again. When she is older I want her to know who the man is that is responsible for her awesome heart. This is her Cardiothoracic surgeon, Dr. Burch. He's one of our new favorite people. ;) He was very happy with how her heart is doing. He wasn't super happy with how she is drinking and eating.

For breakfast she was given the choice to eat anything she wanted. None of us cared what it was, we just needed food in her. We ended up with Pizza, Oreo shake and chocolate milk. We actually managed to get her to eat a lot of it.


Grace had two fun FaceTime calls this morning. Her Aunt T hasn't been feeling great and didn't want to come to the hospital sick. We chatted with her and her baby for a bit. Her preschool class also wanted to say Hi again. She was being silly for them.

Jeff showed up early today and got her out of bed for a walk. While I got showered he took her to a Science Fair down the hall. She had a lot fun. It was strange to have her out and around others, but the nurse assured me no sick kids were allowed in the room. :/ The PCH volunteers are awesome! They made a homemade lava lamp, glow in the dark worms and dry ice bubbles. Super fun!

On our way back to her room we could see how sunny it was outside. We talked her into eating a popsicle out in the sun. While he dad went to find some popsicles she kicked back and soaked in some rays. It was sweet and must have felt so good.


I offered to get some lotion and rub her legs and feet. She jumped at the idea. Once I got the lotion she insisted on rubbing my feet. Seriously, Grace?! I wouldn't let her and she fought me on it. We gave her a nice massage and then since insisted I put MY feet up. I had to of looked like the worst mother on the planet. Here is my daughter hooked up to tubes, with a huge incision down her chest and she's rubbing my feet. That is my Gracelyn for you, she is very nurturing and motherly.
Her nurses set the goal for her  to blow bubbles or windmills eight times a day. They encourage her to do this for her lungs. We took her bubbles with to the patio and got to work.
 Jeff had to carry her back to her room. We wore her out completely and she crashed.
Jeff's  sister and kids came to see Grace.  Gracelyn loves puzzles. Her cousin was sweet and helped her put one together. She liked that.
We had planned a movie night with Grandpa and Grandma and the kids. Grandma brought the new Paddington Bear Movie. They popped popcorn and brought drinks, but we didn't make it through much. The kids wanted to be outside, so we headed back to the patio.
Gracelyn's little sister is missing her. She was one of my major concerns when we were planning the surgery. These girls are 18 months apart in age and best friends. They play together all day long, every day. Shay was the biggest blessing to our family. She was my surprise baby, but Heavenly Father knew what he was doing. During sick season when Grace doesn't leave the house, she always has Shay to play with. The pictures say a lot about how Shay feels towards Grace.
 
I have the best family. I'm sure by this point everyone knows this. ;)  It's not only my immediate family, but my extended family is so supportive. My dad's brother and wife came to visit and check on Grace. It meant a lot to me.
After everyone left Grace was struggling with back pain. She had been complaining about it most of the evening. We guessed it was due to lack of out put. This is one thing that is going to keep her from going home. The nurses decided to do a bladder scan. Right as they were coming to do it, she finally went. We wrapped her back in a warm blanket, gave her some Motrin, and she feel asleep quick.