School Assignment = Therapy Session

Today one of Arianna's language arts assignment was about learning what different professions were. We talked about doctors, nurses, librarian, mechanics, teachers, etc. Then I asked her to pick one of those professions and draw a picture of them doing what they do. She choose a nurse and this was her drawing.

 

I really wasn't sure where she would go with this one. She is learning to draw with greater detail and I know she has had way too much exposer to nurses so I wasn't really sure what to expect. I found this to almost be a very therapeutic exercise for her. I know its may be hard for others to understand this pic so I put some labels on there.

 

 

 

So you can see Arianna is on a hospital bed with 2 nurses next to her. One is a boy and one is a girl.

 

On her right side you have Mom, Dad, Devin, Cyrus, Kyoni & Auberly. She got so tickled to draw a little baby for her niece Auberly. She is in love with her already, just as we are! She just wishes she could be a little bigger so she could hold her. Kind of hard to hold an almost 1 year old. :-)

 

She has the window next to her bed with a storm going on outside. You can see the lightening all over. Then after awhile a rainbow shines through!

 

Oh and cant forget the sidewalk outside in front of the hospital. She loves to look out the window when she is in the hospital and watch everyone walk by. One time she was lucky enough to get a window by the helicotper pad..that was pretty cool for her Dad even though he's more an airplane man. LOL!

 

I just loved how I was able to get a peak inside how she perceives things in the hospital. Obviously it will be very different after heart surgery but it's good for her to do activities like this.

 

She is asking when we will go to the clinic next. That is her consult with the surgeon on Wednesday. She can say his name now too! She has 2 very important questions she wants to ask him.

 

1) Can he please take the breathing tube out her mouth BEFORE she wakes up?

2) Can they NOT put an NG (feeding) tube in her nose?

 

I'm so proud of her and how she is handling this so far. I know the worst is yet to come but I love how open and honest we can be with her. I really feel it helps eleviate some of her anxiety. Please pray as we get ready for that consult. I know Dr. Teodori is one of the best but I know us parents need to hold it together for her and I dont want her to be scared listening to us talk about surgery.

Immunology Appointment

We took Arianna to her immunology appointment this past Friday. It worked out perfect that this was already scheduled because we needed to see him before surgery anyways. I mentioned her easy bruising and he wanted to have a CBC done to make sure she isn't developing an autoimmune disorder. This is very important to know before surgery cause it could cause excessive bleeding and other issues. Good thing is we now dont have to poke her at pre-op the day before surgery because we already got the CBC the hospital needs. I just had to traumatize her anymore than she already will be the day before surgery.

 Devin bringing his sister to another doctors appointment. He is so adorable!

I gave Arianna the option to go get her blood drawn right after her appointment or wait till the next day. She choose to go and get it out of the way. She is so brave!

Dental Surgery

 Getting ready

Trying to stay preoccupied before she goes back

 We actually had a special treat. My friend was our admitting nurse! She gave Arianna some versed to help calm her nerves before going back and I got to get the "bunny suit" so I could take her into the OR. This was the first time she was premeded so I didn't know what to expect. When they rolled her into the OR she was not that scared. Told me, "Hey I've been in this room before." They let her keep doing her stickers and then put the mask on. She is terrified of that cause it smells bad. But because I told her about her brave heart sister, Sofia, and how she went last week and held her mask herself, Arianna put on a brave face, cried a little and held the mask with me. She was out and I left.

After an hour and  a half I got to go back and see her. Poor thing was actually awake a bit when they took the breathing tube out her nose. She told me later this afternoon. :( Breaks my heart. But since she received versed and demerol while in the OR she took awhile to wake up. When she was up and able to move around and talk they discharged us.

 The second we got back in the car she was back out. When we got home I put her in bed, did a breathing treatment and we BOTH took a 4 hour nap. Just what we needed!

She was very sleepy all afternon and didn't play much. I felt so bad cause I was trying to get ready for school but realized she needed me so I stayed home. Thankfully my instructor is letting me take my exam on Monday!

She wanted to go to bed early cause the pain meds wore off and she was sore. So I tucked her bed and our dog, Angel, gave her all the lovin' she needed!

Treasure Box Started!

Since Arianna knows about her upcoming surgery I told her why we made a treasure box. So I wrapped a few presents for her to put in her box. The pink bag is for her to open after her dental surgery tomorrow.

Telling Arianna about her Heart Surgery

I felt like the perfect moment arouse so I told Arianna about her upcoming heart surgery. We sat her down and I told her what the MRI results were. She completely understood what I was saying. I told her the pressures in her heart were too high. She then told me, "That's not good." I've already told her she would need a valve to correct that problem so when I re-explained that she understood. I asked if she had questions and she said no. I then asked if she wanted to read the book "Matty's Heart"I had told her about a few days ago. She said, "Yes."

 This book is about a boy who has TGA and had surgery at 10 days old. Then find out her needs another surgery when he is 4-years old. It's walks you through the feelings he is having, the tests he a needs done before surgery and then all the scary things to come after heart surgery and of course the wonderful things to look forward to after recovery. Even though its a little outdates its a wonderful tool for kids facing surgery.

She was happy to see other kids doing the same tests she has done but she got scared when we looked at pictures after surgery and all she has to go through. God was definitely helping me keep it together because I answered all her questions without crying even when I could see the tears and fear swelling up in her eyes.

After we read the book I asked her if she had any questions and she said, "No. I'm just scared." I told her it was okay to be scared and if she wanted to cry it was okay. She told me several times that she is so brave and wants to be brave for this. I know she will be but open-heart surgery is scary for anyone and add the fact that she is just a 5-year old it is alot to take in.

Then she climbed on my lap and cried and cried and cried. Of course I cried with her a little. I was so worried about letting her see me cry but I know that she needs to see this affects me too. I told her its okay to cry and mommy's heart hurts too for what she has to go through. Then I reassured her that everything was going to good. Reminded her she has already been through one heart surgery and she will get through this one. I told her we will be there every step of the way. Then she told me "Thank you for telling me what is going to happen to me. It's really good that we had that book to explain it to me." I know right there that I made the right choice in how to tell her. I love on her and then took her to pick up her meds and pick out some bubbles and a toy for tomorrow.

The rest of the night was okay. We had some family over for dinner and right after we said prayers she looked up and told everyone that she has to have some tubes put in her in a few weeks. As you can see that is the thing that is scaring her. I didnt want to stop her from expressing herself so I helped her verbalize that she is going to have heart surgery and have alot of tubes and IV's put in her body. She was so proud when she said it! I know God is going to build her strength and my strength over the next 3 weeks. She then asked if they would all be there and of course we said yes!

Surgery is Scheduled

I got the call this morning from Dr. Teodori's assistant. We are scheduled to meet with Dr. Teodori next Wedendsay, October 3rd, to go over everything. That means I have to figure out the best way to break the news to Arianna. A heavy burden and not looking forward to it. Praying for God to give me the strength and wisdom I need.

Then the lady asked if I was ready to schedule her surgery. It's never easy actually setting a date but I am so happy to know she is on the schedule. So her surgery is set for October 18th. We will go the day before for the hospital tour. Now I know you all are thinking, "Why are you doing that? You know the hospital and staff." Yes, I do but I also know Arianna needs to see the child life specialists and get mentally prepared. So we will take her through the ICU and then visit with the CLS. Then we have pre-anesthesia after to do her bloodwork, chest x-ray, physical and finalize documents. We will get the exact arrival time the day before but tentatively we are looking at a 7:30am surgery time, which is great cause that means we are first case of the day!

Thank you all for your love and support during this time. It really  means alot to us.

Arianna Dancing

I just love my baby girl and how she does her interpretive dancing. She used to do this all the time but she hasn't done it much lately. So glad I caught her on video tonight!

Make a video - it's fun, easy and free!
www.onetruemedia.com