Cardiologist Appt.

On Friday, we went to check in with Dr. Jedeikin for a post-op visit. We didn't have an echo because they said her echo she had at the hospital before they discharged her looked pretty good. He did a thorough physical exam and she had a EKG done. He said she looked good. Lexi and Dr. J talked a lot about Santa at the visit. He said she could be weaned off of her two remaining medicines (Lasix & Ibuprofen). We've been doing that as ordered this week and Lexi is excited that she doesn't have to take any more medicine. It's so weird because she has been on Atenolol since she was 9 months old so we are establishing a new morning and bedtime routine without medicine. I still find myself reaching for the syringe to dispense it. She got the release to go back to school when it begins in January. No playground or physical activity where she could fall and hurt her sternum, it needs approximately 8 weeks to heal back together after being split open. But she is just so happy to be able to go back to school and see her teachers and friends. She keeps asking if we can go see the snow and go sledding. Dr. Jedeikin said we will talk about that at our next visit at the end of January. The poor girl, all she wants for Christmas is to see the snow. Everytime we talk about Christmas Day she asks if there will be snow then. Having lived in a colder climate for 21 years, I don't miss it a bit. But to her it's a winter wonderland that she's never seen before! We do hope to make her wish come true and take her up to see the snow in February.
We are getting prepared for Christmas here, gifts are bought, stockings are hanging, the tree is trimmed, the gingerbread house is built and decorated, the mailed packages have arrived. We just have cookies to bake & decorate and gifts to wrap. It's beginning to look like an Arizona Christmas (without snow). :)
Not sure if more candy made it in Lexi's tummy or on the gingerbread house!The girls all snugly in their fuzzy pajamas!

You know it's love when . . .

your big sister picks your toe jam out of your toes!

Oh, Christmas tree!

We picked out our Christmas tree this weekend. Both girls were a big help, especially with the decorating! :)We've been having Xmas concerts in front of the tree everyday!

Post - op Surgery Appt.

Yesterday, I took Lexi back to Phoenix Children's Hospital for her wound/incision to be looked at. After her shower, her incision was looking really red and she said it hurt really bad when I touched it. Taking all precautions, I emailed photos of her wound to the Cardiac Surgery NP and she called me and said to come in. While we were there, we just decided to do her post-op appointment so that we didn't need to make a separate trip back. Thankfully, Kristen (Surgery NP) said the incision looked great and it was just a little irritated from Lexi's shirts rubbing on it and the scab was ready to fall off. Kristen discontinued her pain med (LorTab) and said if she needs anything for pain just use Tylenol. After her appt., they sent us down to Radiology to have a follow up chest xray. After about 45 minutes, I could no longer contain the girls and we took a "waiting room" break and went to the cafeteria for lunch and then came back for our x-ray. The hospital is all decorated for Christmas so we took a tour of all the different decorated trees (there are probably 20 trees in the main lobby area and they all are decorated in unique themes by different sponsors). Lexi's favorite tree - the LEGO tree - all ornaments are made out of legos
We quickly stopped by Cora's room to say hello since we had a quick good bye at discharge. We have a follow up appointment with Dr. Jedeikin (cardiologist) on Friday, Dec. 16th. We'll keep you posted on the outcome of that appointment.

10 days Post Op

Lexi is doing great. Stronger and stronger each day. She rarely complains of pain and when she does it is usually because she is doing something she really shouldn't be doing (pulling herself up into chairs/car seat). They said she had no restrictions and that children are self-limiting but sometimes I think she forgets she is still healing (it's a hard concept for 4 year olds to understand). She refers to her incision and the hole from her chest tube as "her crack and her hole". I believe she is referencing the book Franklin Goes to the Hospital. Franklin the turtle has an operation at the hospital to fix the crack in his shell. We've had several visitors this week and Lexi has really enjoyed seeing everyone, especially since we haven't left the house besides going to the doctor and taking rides in the car to look at Christmas lights.
Today, she received a beautiful painting for her room from all the kids in her class. It's adorable - a big heart with all of their hand prints inside of it. I'll have to take a picture. She loves it and it's already hanging on her wall next to her bed. Thanks to Mrs. Osman for a great idea and gift!
I've been doing my best to find "projects" for her everyday. Monday & Tuesday we began decorating for Christmas and we plan to get our tree this weekend. All of the arts and crafts she has received from friends and family are wonderful and help keep her busy.
(Photos coming soon - we got a new camera and need to get them uploaded to the computer)

We're Home

Lexi had a really good night last night. She slept the whole night without waking for pain medicine and she was able to keep her Oxygen Saturation levels in the high 90's without needing oxygen. Also, last night she had a bowel movement before she went to bed (that was another thing on her "to-do list" to be discharged.) We received the Echo report this morning and it looked good and was the same as when they did it after surgery. We went back to the playroom again this morning before we left while they were finishing the discharge papers to make some more pigs (paper plate pig craft) and we said goodbye to her new friend Cora. We left the hospital about 12 noon and had to look at all the beautifully decorated Christmas trees that they have put up around the hospital this last week. Lexi wasn't able to leave her floor/unit because of all her monitors and she kept asking the nurses if they were going to decorate the hospital for Christmas. She came home on a few different medicines (Ibuprofen, Lasix, and a pain medicine). Lexi hasn't really complained of too much pain today and is beginning to be herself again. It's wonderful to be back home and have all of our family under one roof and together again. Madison has been giving Lexi tons of hugs and kisses. Thank you all for your help, gifts, prayers, support, and love during this difficult time. We are very blessed with Lexi's outcome from the surgery and blessed to have family and friends like you.

Post Op - Day 3 - We're Getting Close to "HOME"

Lexi had a pretty good night. She needed pain meds at 2 am and then some other meds at 4 am. She's still needing oxygen when she sleeps but not when she is awake. She has a small area in the lower lobe of one of the lungs that is slightly collapsed. She needs to do some more breathing exercises to help open up her lungs and improve that area. This morning we bathed, got dressed, ate some Trix for breakfast, and walked to the playroom to make more crafts with Cora, her new heart friend.
After the playroom, we came back to the room because Lexi was tired and needed to rest. While she was resting they came to do an ECHO (ultrasound of her heart) to see how it looked since surgery. We haven't received the full report, but her surgeon was here when they were doing it and he seemed pleased by what they showed him.
Vanessa from Mended Little Hearts came to visit and brought us some food and fun things. She also had a visit from Juliet, the gray poodle. And then we went back to the playroom to make a pink pig face & tissue paper Christmas tree. They have lots of fun crafts and keep the kids really busy.
Lexi just finished her breathing treatment (EasyPap)to help with her lungs and is watching The Lion King movie in bed.
They are in the process of decorating the hospital for Christmas and we are hoping to be able to take Lexi for a walk later to see all the Christmas trees and the trains that are in the old PICU where she used to stay when she was here previously. Tonight, Gramma Cindy & Papa Tom are coming to visit Lexi while Mommy and Daddy take Madison to the Winnie the Pooh Christmas show with the HopeKids. We are getting closer and closer to coming home each day. It's been a busy day and I am sure Lexi will be tired tonight.

Post Op - Day 2

Lexi had a pretty good night last night. Mommy slept with her half the night. Today's goal has been to walk, get out of bed, and have some play time!
She hasn't had much of an appetite since that big breakfast yesterday. We just finally got her to eat some strawberry ice cream at 3:30 pm. And she is drinking some water and juice.

Today, we gave Lexi a little bed bath, fixed her hair, put on some of her own p.j.'s. She looks quite cute. :) After we got dressed Lexi walked to the playroom where she painted a christmas tree ornament and painted a picture. She met a little girl, Cora, who is the same age. Lexi ended up getting sick right as we were getting to leave the playroom so we rode in the wagon back to her room.

Lexi and Auntie Laurence playing "doctor"

She has lost quite a few more "tubes" today. The biggest progress was getting her chest tube out (the tube that is in her chest right below her incision to remove excess blood around the heart) and her iv that was in her neck removed. After they removed the dressing from her incision today she had a visit from "Tiger" a little shitzu dog and they had lots of cuddles together.

Lexi and Tiger

Lexi's pain has been better controlled today and her spirits are much better. The nurse said she could possibly go home tomorrow or Friday! We have another walk to do in awhile, so hopefully that goes well for her. And little sister, Madison, may be coming to say hi to Lexi tonight if everyone is feeling up to it. She's been having lots of fun with Gramma Cindy & Papa Tom.

She Did It!

At about 4:30 pm today, Lexi got out of bed and sat in the chair! She sat in the chair for about an hour and did really good. She's even gone to the bathroom twice on the potty chair. We gave her her very own personalized Heart Super Hero Cape to give her a little motivation. She decided to use it to cover her legs in the picture. I know tomorrow when we walk she'll be wearing it with pride around her neck! (more photos to come) This was the first smile she has given us in 2 days! Even though it wasn't 100% natural it still makes us feel good.

Post Op - Day 1

Lexi is doing good.
She had a pretty good night. She was rather uncomfortable around 4:30 am and we spent quite awhile trying to relieve her of her stuffiness she has in her nose. Lexi does not like the oxygen through the nasal prongs, but we've managed to get her to keep it on.
She got some of her "tubes" out (IV lines, catheter, & monitoring devices) and removed this morning. She ate a good breakfast of eggs, ham, & cheese this morning with chocolate milk to drink and hasn't had anything since besides ice chips. She has been in quite a bit of pain since they discontinued her IV automatic pain meds and she now has to request them. I am sure in a 4 year old mind, she doesn't understand yet when she needs to ask for them. I just had to finally tell the nurse to give her something because she was miserable but she kept refusing to accept the medicine when they asked her if she wanted it. She has been awake most of the morning reading some books with the volunteer, blowing bubbles (to help expand her lungs), and watching some TV.
Kym (heart mom to Isie) came by to say hello and dropped off a few things. It was good to see & chat with someone besides medical staff. Don't get me wrong the medical staff at PCH is great but it's nice to see a friend.
She is now finally resting peacefully. It breaks my heart to see her in so much pain. She just keeps complaining that her whole body hurts. We've been waiting for physical therapy to arrive and of course, they finally arrived after we got her all settled down and resting. She hasn't been out of bed yet and I know that is a goal for today so that will likely come later this afternoon sometime. Thanks for all your prayers. We hope the recovery will get a little easier for her in the next few days.