Discharged Again - Week at home

In the time being in the hospital for only a week, Tanner was so sick of people touch him and bugging him while he slept he was SO OVER IT. T had multiple echos during his stay. He kept having a little bit of fluid on each echo, finally they came in and checked his line but trying to draw out some fluid that was left. When they did this out came a clot! (not uncommon that this happens) The drain was clogged and that is why it seemed all the fluid was gone per the drain bag but then on the echo it showed fluid.  On 7.17.2017 T's Drain was removed. I believe the final amount of fluid that was removed was about 300ml. (30ml=1oz)  It was not a fun time for T but it was progress to going home again.  I still can not believe how much fluid was around his little heart!

T did have some fun times during this hospital stay. Thanks to DAD!! Jeff is such a fun dad and loves to play games, tease, and finds creative ways to make the time go by and enjoyable while it passes. BLANKET FORTS FOR THE WIN!

We hoped that with the drain coming out, T would get discharged the next day. But the Cardiology Team wanted us to stay one more day and have another echo to just make sure no fluid came back after the drain was out. So finally on 7.19.2017 T was Finally discharged again!

Life at home again.... T is 100% BOY and back to his normal self again! (I was gone home to work for a couple days and came back to a completely different kid it seemed like) T has had A TON OF ENERGY!!! I can not believe how much better he is acting. He is happy, playful, a tease, running around and does not seem nausea at all anymore! And he is EATING!! He is eating everything in site it seems like. HIP HIP HOORAY! This a huge step in going home to St. G! He just need to eat a little more, which is hard because he is still a Toddler and we all know how much and well a toddler eats! We had a great weekend with some family that came north for a day. The 24th of July (pioneer day in Utah) was a big rough! T and I tried to make the best out of it by playing, watch the parade on TV, taking a nap together but it was still hard because I knew of BIG celebration we were missing out on in Beaver! I CAN NOT WAIT TILL NEXT SUMMER! It will be such a great summer and I will take full advantage of every minute of it to make up for this year!

 WHO DOES THIS PICTURE REMIND YOU OF??? ANY GUESSES!!

OREO'S FOR THE WIN! HE LOVES HIS COOKIES

"When summer gives you rain, jump in the puddles" -Winnie the pooh

T had a blast playing in the rain to today. It was just the change of pace that we needed today! Living miles away from our home, and not being a complete family all of the time can really start to pull on you. We are so grateful for all of the support everyone has give us. All of the sweet message and text really have helped me so much. And gives me that extra boost! 

RAIN! Rain for me has always been my favorite. I don't know what it is, but some how rain gives me strength, it helps clear my mind, it opens my eyes and it ALWAYS ALWAYS make me happy. Even more happy when it is the warm summer rain that you can run around in and dance in! As I was able to play in the rain with T today it helped me know everything is going to be alright! We will be a Family again. T will be healthy again. BUT also helped me remember to ENJOY this time! ENJOY the Craziness. ENJOY the instability. ENJOY the hope. ENJOY the snuggles and the struggles, and most of all ENJOY the JOURNEY. T has been through so much and will not remember any of it! I am his MEMORIES! I will share these stories with him. I will be able help him through even more trails in his life because of this time in our life together. Our bond has grown strong. NOT just bond between me and T. But the Bonds between Jeff and I, Caroline and I, Tanner and Jeff, Jeff and Caroline, Caroline and Tanner. and the bonds between our families, our extended family members, our friends, our Doctors, nurses, and most of all OUR Savior and Heavenly father! And these old, new, stronger bonds will never be broken or change because of all that we have gone through together. 

At T appointments this week, the team was really happy that he started eating again and that he has improved so much. His counts are looking awesome, which is great given that he was sick and we thought that his number would drop. We are about 68 Days Post transplant. Our day 100 is Aug 28, as of right now. And Tanners readmission should not hold him back to much, if at all. We just have to work on getting more meds orally and him eating more still.

Thanks for reading and the prayers!

RaCail!

Readmission 7.13.2017 and Days to follow

Well Tanner got readmitting into the hospital! It's been rough One! (These are updates from Facebook - It was just easier to update quickly there at the time.)

7.13.2017 Being readmitted. T caught the paraflu going around and his oxygen level was low today at his doctor's appointment so they want to keep him and observe him for a day or two... Love you Tanner Boy💙😔😢#hopefullyashortstay #tmantough2017 #toughliketanner

7.14.2017 You hang on tight little man, and I won't let go. We will get through these bumps along the way!

T had an echo this today due to his chest x-ray yesterday showing an enlarged heart. The echo showed a large amount of fluid around his heart. Because of the amount and the concern by the cardiologist we are head to the PICU for a couple hours until we can get into surgery tonight with the IR (intervental Radiologist) to remove the fluid off his heart. We may go back to PICU just over night depending on how surgery goes. They will leave a drain in till all of the fluid is removed. We are not sure what caused this fluid, we will send it for testing and hope we get an answer. I will update more when I know more. Love you all! Thanks for all the prayers. #notashortstayafterall#tmantough2017 #toughliketanner #bumpsbumpsandmorebumps#hangintherelittleman

Post Pericardiocentesis (fluid removed from around the heart) snuggles are the BEST! T-Mans procedure went well they pulled off about 130ml(30ml=1oz) of fluid off from around his heart and sent it for testing. We are hanging out in the PICU for the night. He still has the tube in to continue to drain it and make sure the fluid gets taken off if it comes back. So another scar to hard to his collection. He has the worst time coming out of anesthesia. It was hard to help him get comfortable and happy again but I hope a good night's rest will bring my happy baby back tomorrow.
Thank you so much for all the thoughts, prayers, texts, and love that you all sent today. It was nice!

T- You amazed me today. Just like you do everyday. Love you tons! (The last picture is of when he was headed into his procedure. He was not very happy that I left him with that strange man 🤣 but he was the nicest and funnest guy, everyone has been amazing today) #tmantough2017 #toughliketanner

7.15.2017 It's a bright, new and better day ahead with a Happy T-Man. Thank you from the bottom of our hearts for all the thoughts and prayers you all sent our way yesterday! We are doing awesome today and headed back to the ICS unit today! #toughliketanner #tmantough2017

During this time - I was extremely grateful for our loving heavenly father to comfort me and all the prayers and thoughts that were sent our way. 

Days 35-54 Post Transplant

YAY! We have hit past day 50 - which I am hoping not to jinks myself by saying this BUT we are half way to day 100 and  that much closer to going home. T has been having so much fun with lots of cousins around to play with but still loves to have snuggle time with mom and dad! T's number did a little drop a but they came back up all on there own!!! YAY! This is so good! And I feel that they came back up at the right time because over the weekend T developed a runny nose and a cough, and has tested positive for the paraflu virus. Lucky no fever yet so no staying in the hospital yet but we have to keep a close eye on him. T also has started to get hair back... they are so tiny and so thin but they are there. He also is taking a medication that make him super hairy and that is starting to happen on his eye brows and back a little, so i am sure before to long he will have a lot more hair on his head.

As for the rest of us, we are hanging in there. Last week while I was home working (Jeff and I trade off weeks) it was a hard week to be home. For once, I was able to go and attend all of church on that sunday, and it was just what I need but also hard because it hit me like a ton of bricks of everything that T has gone through and still has to go through to be able to sit with me at church again. I just really missed him and I had only been gone for 24 hours. Then I went home that after noon and walk upstairs and into T rooms to pick up some things and I just lost it again because he is going to be so much older when he is able to come back home, and I just want him to stay little. This week was also the week of the 4th of July. So a lot of family time happened with out us there and times that we were there, we ALL were not there! It was hard.

Caroline is doing good. She has her moments were she just wants to be home at her house and doing things on her own time. but she is also loving the time with cousins and lots of playing. She actually may end up being board at our house when we go home and I know for sure that she will miss playing with Kayz(her cousin that we are staying with) lots!!! Even tho they have their fights, sometimes more than we would like them to fight, they are still BEST FRIENDS!