Pages

Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Tuesday, August 30, 2011

Home is where the heart is, and love and peace abound!



Ry Ry made this nice sign for Gator, it isn't Danish, it says Welcome Home!

"Home is where warm, circling arms go all the way around. Home is where there's father with strength and wisdom true. Home is where there's mother and all the children too. Home is where our Father who dwells in heav'n above, guides us in the way we live and lets us feel his love."
Have you heard that primary song? I love it! We were discharged this morning and I have been going since we got home. He has complained of a tummy ache almost the entire time we have been home and had a low grade fever of 100.6, but he is responding to the medicine and hopefully he will be better in the morning.

Sunday, August 28, 2011

Recovery Day 3




We woke up at the bum crack of dawn to a nurse needing blood. One of the bad things about being moved to the floor you have to be poked to get blood taken instead of having it drawn from an existing line. Anyway the nurse could not get it after two failed attempts he said he would send in another in an hour so Gator could rest from the stress. We slept for a while till the next phlabotimist could come, she was fast and got blood the first draw. We snoozed for a little longer then went down for a X-ray. We came and snoozed until the doctors rounded. I nearly fell out of bed when they told me they wanted to send Gator home. WHAT THE? I started to stress out bad now and it was only 8 a.m. Daddy came up, Gator had breakfast, then we headed to church at the PCMC branch. I love the meetings, 30 minutes!!!!! Finally we came back for lunch and a nap. We woke to our home teacher and his wife for a visit! Gator had some awesome therapy on a pedal tractor. He drove it all the way down to the elevator where we road it down to see Auntie Lisa, Uncle Marc, Arli, Wells, and Ry Ry. We went to the hospital play room together then came back for dinner. We finally chatted with the NP about our stressed feelings. She is on board with us taking one more precautionary night in the hospital. So we most likely will be discharged tomorrow. This is completely different than our track record, making me totally scared that we will have a back slide. There are a few things that worry me. #1 he has a bump at the top of his incision. #2 his sats have dipped until we raise his oxygen to 1 liter. #3 he has complained the most that he doesn't feel good. Anyway just one more night and I am sure I will feel better all together. Thank you so much for the prayers, I have a testimony that those prayers are being answered I can see it manifest in my son and myself. Our whole family has been watched over. Thank you thank you! We feel the comforter so close when we are here watching others in their trials while we try to endure ours. We are better because of all of this.

Saturday, August 27, 2011

Recovery day 2





Gator had a very restful night. Nurse Chad said he slept 90 percent of the night. We like that guy, he wore his super guy shirt that is green just for Gator. This morning was very eventful.....Gator was able to get his chest tubes out, along with his pacer wires and art-line. It is almost easier to say what he has left rather what they took away. He walked to the potty and has been itchy because of the morphine they gave him before removing his drainage tubes. Then the best thing happened, 1SG Winn came to see us. He brought dart guns with him. There was the Gator I knew, up until this point he hadn't talked much, and was extremely zonie (is that even a word)finally he perked up and smiled for reals. We played dart guns till Gator got some lunch, then daddy and I snuck out for our own lunch. Nurse Pam took Gator on a walk and played games, then he took a little nap. We started to get some special visitors Grandma and Grandpa Groesbeck. They were with us when we walked up to the third floor!!!!! Yeah! Then we got to have a visit from the E babies! I bet after all the fun they are going to want to come back to the hospital too!Then Grandma & Papa and the Aunties came for a visit.... They played until Ry and Munchie came.... Oh they played! He is asleep now having a nice rest till we have more visitors later.

Friday, August 26, 2011

Recovery day 1 part 2

We've had a pretty busy day. After all that talk about eating and drinking he won't eat. Well he will, just not that much. He took some good naps, rode in the wagon, we took out the catheter, and he rested. We had some fun visitors today. Heart mommy Diane, Annie Beth, Jen and Nate, a couple of our past nurse friends, Grandma and Papa, best of all Ry and Munchie. We miss those two girlies a bunch. They are so important and brave! Munchie wanted to dive on Gator and play like always but he is still so sleepy. We left him to rest and hopefully get some ourselves.

Recovery day 1




Last night Gator didn't sleep much. He wanted to eat and drink very badly. But this morning he is doing pretty good we have Adrianne again as his nurse, did I ever say how much we love some of our nurses. Gator's goals for today are to rest rest rest and to pull lines. They already pulled out his IJ in his neck and his RA so most of the big gun meds are off. When we ask him how he is he said, "I am a little bit sick and really itchy, and that is it". He had a couple of bites of watermelon and oranges for breakfast, also a few sips of raspberry smoothie. He has little naps here and there but says he wants to play and go home. We are trying buddy!

Thursday, August 25, 2011

Update #5

We are finally back with our man. I don't really know what I was expecting to see. Maybe I thought he would look similar to when he was a baby all puffy and such. He looked better than I imagined. He still needed to be intubated because of his blood pressure, but he worked really hard to get that tube out. One thing I really noticed was how twitchy he was. That was from the anesthesia. He has a ton of monitors still and as soon as I walked into the CICU it had the very same smell that I remembered. Not a bad smell, just a super clean-coffee-adhesive smell. Gator tried to talk to us while intubated. You can't talk with that big tube down your throat so he resorted to shaking his head to tell us yes or no. Finally we got to take it out and the very first thing he said is "where's my dad?" Of course it is cause daddies are the coolest! Now he is totally fixated on having a drink. He just keeps saying over and over "okay I am ready for that drink now!"
Well more later.

Update#4

He's done! We just had a long chat with Dr. Burch his surgeon. I hope I remember everything.... He said Gator had a ton of scar tissue that he had to carve
out or around the heart, he also noticed he had a bunch of collateral veins, let me explain what those are for those who might not understand. Collateral veins are produced by the body when it thinks you are not getting sufficient blood supply from a certain part of the body. So it will grow other veins to assist in circulation. Unfortunately these veins are thin and not very organized. So that makes these guys unstable. So Dr Burch had to coteries these before working on his heart. Once he started the Fontan he attached a size 20 conduit and also was a little aggressive with his fenestration giving him a 4 instead of a 3.5 the bigger the fenestration the better his pop off is. He mentioned he was having dips in blood pressure which is part of recovery and also one thing he has never had an issue with before is his sinus. He dropped out a couple times and so we talked about a pacer in the sometime/not sure when future. We will cross that bridge when needed. They are working on getting him to the CICU and managing his pain. We will keep you all posted and I will most likely revise this when I my brain fog clears.

Update#3

Daddy and I switched off going down to the cafeteria for lunch, while it was my turn Annie updated us and said that Gator had done well and the echo looks good, now they are working on closing his chest. We will get to have a conference with Dr. Burch in a bit.
P.S. I had the Salmon Bulgogi for lunch, and it was awesone!

Update #2

We just heard from Annie who said Gator is doing well. They finally have him on bypass and are working on the conduit or the Fontan right now. Once they finish that they do an echo that will determine how good everything looks, then if it all is looking the way it should they will close his chest and then work on trying to extubate. It may be a while yet before we can see him but all is well so far!

Update

Annie the NP just updated us and let us know that Gator hasn't experienced any problems. He does have a bunch of scar tissue that they are working on they have to carefully remove it from around each thing that it is attatched to, he hadn't even been placed on the heart and lung bypass machine. They guesstimate that it will be another hour before he will go on bypass. Annie commented that his sweet sleeping face is poking out from under the sheet along with his super white blonde hair. We have spent most of the time in the waiting room.

All set


We got up and out the door bright and early this morning and enjoyed being one of the only cars on the road. We made it up to the hospital and checked in. Gator happily played with toys until we went back to be weighed and measured! He was a chunker at 34 pounds! We visited with Dr. Burch and Dr. Tani. We also got Dr. Hannon as our anesthesiologist which was nice to see his familiar face. It makes things not feel sooooooo.... Uhhhhh....raw. He took Gator back in the toy police car without any Versed and His happy little thoughts of bubble gum sleepy gas. We haven't heard anything yet but we are feeling good so far.

Wednesday, August 24, 2011

Posting a Comment

I wanted to let our friends and family know that we love them and respect their privacy, with that being said sometimes the only way to get a message to our little family during this time is to leave a comment. We loooooovvvveeee comments, but sometimes they are meant for just us and there are those whose loving words are personal. SOOOOOOO! I have moved our comments to being moderated which means that if you leave a comment and you don't want it published for everyone to see you can let me know and we won't post it. If you don't mind that anyone can see them, then after reading them I will post them to our comments section..... Thanks everyone. REALLY!

Pre-OP

While the girls stayed with Miss Jen and the rest of the E babies, Gator and I did Pre-op at PCMC. He was a total dream. He was so polite with nurses and Doctors. We had to do a Physical, take pictures (x-rays) and do a blood draw. He only shed tears when the needle went in. He was so brave and the tears quickly dried up when he got to pick a toy. We have been finishing our final prep, like getting the girls packed, cleaning up little messes, washing 'just one more' load of laundry, and getting Gator's things together. Tonight we take the girls to G&P H's house. We need to be at the hospital at 6 so we will most likely leave around 5:15-ish. Then surgery should start around 7:30. I am feeling really good about everything. Monday we had priesthood blessings, and we have felt the comforter as we know many are praying in our behalf.... WE FEEL IT! I have done all the pre-surgery nesting that I thought was necessary. So we are going to do great and plow through. We have a couple of heart friends up at the hospital right now, so we know it will be familiar. Thanks again to all our helpers, the love we feel, and mostly the prayers/fasting in our behalf's...

Monday, August 22, 2011

Happy Birthday Daddy

Daddy shared his birthday with Gator's Wish. The day we came home no less. So we tried to make it up to him the next day.

Munchie is such a messy eater.

Ry built daddy a cake. Chocolate raspberry with blue sprinkles. How do you beat that?


Daddy we love you in so many ways. Thanks for all you do!
Posted by Picasa

Wish Part 3

The Magic Kingdom was amazing. There was a lot more for the kids to ride here. They could do almost everything. We saw Mickey and Mini mouse, Munchie wasn't sure of some of the characters and if they kinda sprung on Gator he would lash out and smack them... Sorry. The kids looked cute in there homemade outfits. I hate the thought of spending a gazillion dollars on things. It is also hard to find matchy matchy and we all know I love myself some matchy clothes.



There was so much to do at GK that we couldn't fit everything in, besides the pool and splash pad, they have put put golf, Fishing, basket ball, an all abilities park themed after candy land, an arcade, horse back riding and a carousel. Many of those things were rained out each time we had a chance to do them but we tried. We even fit in the cookie Kart which has cookies and lemonade come to your villa and we had pizza delivered one night.





This is Miss Mary, Mayor Clayton's wife. She came to tuck the kids in one night. The kids just laughed and laughed the whole time.... This was after they got home from Kids night out- parents night off.

We kinda missed the kids....



Gator cried a little when he found out we had to go home. It was hard to leave the magic and absolute joy! We are so humbled to have been able to have this trip. There is no way our family would have EVER been able to do something like this! The memories will get us through the hard moments.
Posted by Picasa

Sunday, August 21, 2011

Wish Part 2

On the 4th day we went to the Ice cream Palace for breakfast. Gator thought that was pretty darn cool. Then we went to Universal Island. Daddy and I had mapped out the route the night before and we were excited to try some of the rides. In Dr. Sues land there were no straight lines. Even the trees were crooked, they came from around the area Katrina came through and wonkied them.

Ry was a dream of a big sister, ready to rock the coasters with dad or help mom with baby. She walked all over everywhere and didn't complain.

The kids loved seeing all the characters. Our neighbor made us signature books that the kids took around with them. They were such a hit that I had people stopping me to ask where I had purchased them. Thanks Miss Joey! My favorite ride at this park was at the Harry Potter area. Gator rode Huffle Puff three times. On the Dueling Dragon ride parents could switch off. Well when we got to the waiting area daddy noticed that munchie has something on her face and mouth. When he looked in her stroller he thought he saw a soggy cookie, but it was a little blow out she had found with her hand and had mushed it everywhere. I sent him on the coaster while I set to work cleaning up the mess. EEEEWWWW!

In that same day we made it to Universal Studios. Daddy's favorite ride was there along with Gators. He would say "That was my Fay-brit"

This is the Ice cream Palace. On Sunday we went to church at a fantastic ward. We met Diane who works at GK and she gave us the special privilege of seeing Mayor Clayton life sized stuffed animal... WOW! The first thing the second counselor whispered to the bishop as we walked in was."ooooh these guys need callings" we would taken them to if we got to stay forever!

This is the M family. What a wonderful family to know. Our kids were instantly friends and we just wanted to smooch those girls and there little man. We kept bumping into them, then after a while we couldn't wait to see them so we could ask them what they had seen and done in their day.
Posted by Picasa

Gator's Wish

On the first day of Gator's Wish it was considered a travel day! We had been planning and getting excited for weeks. The packing alone for this mamma was a week long project. That morning we couldn't sleep any longer. It felt a little like Christmas. We got to the airport and through "sec-ur-it-ee" (Ry pronounced it like Bon Quee Quee. The kids did great on the plane, one of the flight attendants found out Gator was a Wish Kid and gave our whole family Ben and Jerry's Cherries Garcia ice cream.. Yummy! Daddy also found a free WIFI to use on the plane so the kids watched movies on the IPad. Gator asked a bazillion times, how many more minutes? My standard answer because in lots more. When we arrived in Florida there was a special greater at the airport that was so nice, he took us to the car rental place and helped find our "Mini-Ban of Wonder" that is what Gator called it.



This is Jay our Greeter. We safely made it to Give Kids The World. This is a special resort for kids with life threatening illness. Everything is kid friendly-mother approved. We were starved and headed over to the Ginger bread house for a spaghetti dinner. Before we could enjoy dinner we had to bathe Munchie in the sink because she had a pooptasterphie. All of our first pictures there with her, she is naked because we hadn't unpacked anything for her change into yet. After check in we went to our "Billa" or Villa. It was a castle, with two bedrooms and two baths, a kitchen, and a family room. The fridge was packed with drinks and they even put a cake in there for us to enjoy. Each night at GK they have an event. Wednesdays is Village Idol. My kids were a little too scared to go up on stage but they had plenty of the free popcorn, drinks, and pucker powder.

The next day we headed to Sea World after a pancake breakfast at the GBH! We rode rides and fed the Dolphins!. That was amazing to feel their skin and be so close to them. Ry had an incident where they said over and over not to pick up the little white trays that the fish are in. Well I dropped one of the fish and she was trying to be nice and give me one of hers and she picked up the white tray and the dolphin popped right out of the water so fast, scared us a little but other than that we were fine... Wish Kids and fams got to sit right in front at the show and Shamu did belly spins and sprayed us with water. It was soooooo hot it felt really nice.

After Sea World we went to Aquatica to cool off. It is kinda like a Raging Waters or Cherry Hill. It has water slides and Laaaaazzy rivers... It was pretty fun. So exhausted we headed back to GK but didn't want to give up on the fun because it was Thanksgiving and Christmas there. We had a yummy turkey dinner and sat on Santa's lap.. Each child even got a Christmas present! Since we were in the center of the village we decided to go to the Castle of Miracles to place Gator's special star, so that he is a part of GK forever. Then before bed we ran to the La Ti Da Spa and Ry had a quick Pamper Session. Then just because it is open so late we had ice cream, Munchie had her second blow out so we headed home to take care of that. Daddy and I put the kids to bed, folded laundry and collapsed into bed so we could Rock it again the next day.

Munchie turned 10 months on our trip, but she still couldn't ride the coasters. Dang-git! We Went to breakfast at the GBH. I love that the kids have options to choose from. There was also a bell that the kids could ring if they finished their meals. Gator was so inspired by it that he ate better there than he has in a while. We went to Disney Hollywood studios. This was one of my fave places. The Toy Story Ride was amazing. I could have done it ten times. At each park we visited we turned the sit and stand stroller into a wheelchair so that Gator could have a place to rest. Also at the parks we had something better than a fast pass. Like a super speedy pass that got you to the front of almost every ride and Character. We even saw Lightening McQueen.



We tried to go back to GK for pirates and princess night but Tropical storm Emily was rounding Florida and she brought huge amounts of rain. We bought umbrella's the day before which turned out to be a really good thing. We used them almost every night. So P&P night was cancelled do to rain. Bummer. So we went and got more ice cream, there was a volunteer from the space center there and he showed us the rocket launch from that morning and told us why stars twinkle, it was really interesting.

The kids were having the time of their lives.