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!
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Things Just Became Official

I got a call about 5pm from Arianna's cardiologists, Dr. Barber. They presented Arianna's case to the cardiothoracic surgeon, Dr. Teodori this afternoon. After reviewing her MRI, echo, cath, and Holter studies he agrees it is time for a pulmonary valve to be placed and he accepted her case! He was at Phoenix Children's Hospital when she had her first surgery so we are very happy to have him at Diamond Children's Hospital now!

 Dr. Michael Teodori

A new question arose today during the consult. Arianna has always had tricuspid regurgitation that has worsened over the years. They are wondering if there is a defect (hole) in her tricuspid valve which is the catalyst for her increased right ventricle pressures. She needs to get a more advanced echo done prior to surgery so they will take a better look at that area. If they cannot visualize it with echo they will do a transesophageal echo during her surgery to see if they can detect any defects with that valve. If they do then Dr. Teodori will address the tricuspid valve as well. I hate to even think of them messing with another valve but if there is something wrong I pray they can fix it and be done with it without causing further issues down the road. As it stands right now if they can place the homograft in her pulmonary valve then she is a candidate in the future for the Melody valve with is done via cath. But if they mess with that tricuspid valve I worry that she will need more work done in the future and that would only be done open chest. No one likes surprises more than me!

The plan at this point is to:

1) Get a consult with Dr. Teodori to go over everything.
2) Continue with her dental procedure that is scheduled this Thursday to fix her cavities and possible   crowns. We must get this done prior to her heart surgery because endocarditis is not something we want to risk with a new valve.
3) See immunology this Friday and get her assessment sent over to cardiology & surgeon. She needs irradiated blood since she has DiGeorge Syndrome so we have to make sure that is ordered for her blood transfusions during surgery.
4) Schedule appointment with pulmonology to get a check-up and make a plan for her pulmonary health prior and after surgery.
5) Schedule a cardiology appointment at the Wilmot clinic to get an advanced echo done and have our last face-to-face with the cardiologist before surgery.
6) Oh yeah and somewhere in there I'm hoping they will call with the actual surgery date. That would be nice!

Treasure Box

A dear friend of mine, Pam Miller, has a daughter with DiGeorge as well. She was telling me about this great idea to do for Arianna's hospital stay. Her daughter recently had a mouth surgery and this was a hit for her.

We make a Treasure Box and every time Arianna does something brave or courageous she gets to pick out a present! We were already planning on buying toys and gifts for her to have after surgery so why not make it fun and exciting with a treasure box!

So today for our craft project that is exactly what we made!

Still no word from her cardiologist about a surgery date so we have not told her yet. She asked a few times what we were making this for. Broke my heart. I told her we will be using it soon and left it at that.

Since Arianna has her dental work on Thursday she is asking about that today. She likes to know the exact date it will happen. She knows she needs to go to sleep and have a tube in her throat. :( It breaks my heart for my daughter to have to know all of this but she is one smart cookie and put two and two together last time when she woke up with a sore throat.

Blogging is something that really helps me so I'm sure to be posting alot over the next month or so!

It's Time

On September 21st, 2012 I got the call from Dr. Barber regarding Arianna's cardiac MRI results. Her right ventricle pressures had increased from the 130's-140's to 160's-170's! This is a huge jump in her pressures! She has officially hit the danger zone which means it is time to get her a pulmonary valve. The last few months she has slown down so much. She has also started getting daily headaches. I've pulled her out of school to homeschool to help her the best I can. I knew it was time but its still so hard to hear. The doctors are going to have a surgical consult tomorrow with Dr. Teodori and will be scheduling her surgery in the next few weeks.

Cardiac MRI

Arianna had her 6 month check up with the cardiologists in August. The echo showed her an increase in her right ventricle size, which warranted another MRI to be done. On Monday, September 17th we took her to UMC for her cardiac MRI.

 On our way to the hospital. She has "Coco" and her Beads of Courage!

She did amazing this time during the wait. She was not nervous or anything. She knew she had to "go to sleep" for the procedure. It wasn't until I walked her back that she freaked out and clung to me like a little monkey. As always, it was the hardest thing to do. I sat her on my lap and pinned her down while I forced the mask on her face. She cried and cried and asked me to take her home. Finally she feel asleep and off we went.

The scan took almost 2 hours! Since she always experiences headaches we asked for them to give IV Tylenol before waking her up. She also gets her antinausea medicine ever since her exercist episode a few years back! She woke up great this time without the delerium or headaches. With my girl in my arms we were able to go home!

My mom is always at all our procedures, appointments and surgery. Arianna makes a point to call her and make sure she will be there. Here they are at home after she watched a movie and relaxed. My mom always makes these fun crafts with her! Thanks Mom!

Chest pains

Arianna had some very scary episodes of chest pains and blue spells. She even managed to land herself a trip to the ER in August. So the cardiologists did another 24 hour Holter monitor to check things out. Everything came back normal!

Here she is wearing her Monkey packback which is actually holding her monitor!