Day +23-35 - Last Week at the Hospital, Discharge Day 6.16.2017 (Day +28), Week 1 of Life out side the hospital

The last week at the hospital with filled with lots of playing, making all the nurses fall in love with T even more, due to him getting his personality back, and preparing to get discharged. He was finally allowed to leave his room as long as he kept his big green mask on. Tanner love it!! We played in the play room, ran the halls, kicked the ball, and did wagon rides(His absolute fav!) On one of the days we asked if we could step outside because it was not very windy and they said yes! So we went out and I thought he would be so excited! BUT it was actually the opposite. We had been inside and in the same room for 30+days (on chemo days you did not leave the room) and so I think it was something new again and that made him very nervous! He hung on tight and would not let me put him down. So we just went back inside and did more playing. Caroline came up on Thursday with G&G Jolley. And Tanner LOVED having time with them and having C to play with him.

On 6.16.2017 Was the day we were Discharged from the hospital to my sisters house. (We have to be near the hospital till day 100) We have made many friends at the hospital with Nurses and other Patients. For me, it was a bunch of mixed emotions. So excited for T to leave but also sad cause of the friendships we have made and I would have a little more stress keeping track of things. This was a busy day of learning how to do things for Tanner, getting our room cleaned out (yes we pretty much moved in) and then getting home health over to my sisters house and learn more. It has been a lot of work being at home. Tanner is on 11 different medications - some of these are done once a day others are twice a day! He still is getting his nutrition via TPN/Lipids through his IV and Tube feeding through his NG Tube. We are trying to get him on more Tube Feeds so we can stop the TPN/Lipids but T is just having a hard time with it.  T is loving being out of the Hospital and enjoying playing with Caroline and my sister's kids. I feel that is had been a huge blessing to be out and T is doing great with everything and has started to pick up food and eat small bits. (We Tried to get pics with all of our nurses but we just missed some cause they did not work again before we left. Sorry if we missed you)

We are still being closely followed by our doctors, and we have multiple appointments weekly. Tanner had his first outpatient appointment on Monday 6.19.2017 and the Team was super happy with everything and how his labs were doing! We thought for sure he was going to need another platelet Transfusion but his number actually went up on there own without help! HAPPY DAY! This means so much to everyone! The same goes for the second appointment on Thursday. So far we are still doing good and love playing outside of the hospital.

Day +19-22

T is a CHAMPION!!! He is such a good baby for what we has had to go through and what he will continue to go through! I am so excited to announce that T does not only know his animal sounds like a BOSS (See video on Facebook. It will make your day. I promise) but ALSO T's body has started to accepted the Transplant and officially engrafted on day +20 which was 6.8.2017!!! Engraftment means that his body has started to produce the new WBC from the donor on his own. We had to give him a little boost with some medication called neupogen, but it did wonders and was safe to give. His numbers went from pretty much 0 to 1400 in about 8 hours. The engraftment takes place when his ANC level reaches 500 and above for so many days and it has stayed above that! :) T still is struggling to eat/drink but they say that takes time because his body has a long road of recovering from chemo!

The plan from here is to keep letting T recover but also for him to get ready to leave the hospital. Unfortunately, this does not mean home to St.G and it is also a big task to get him ready. To be able to go home T needs to be off all strong pain medications. This med is called Dilaudid and he was getting a continuous dose. On 6.9.2017 we halved the amount he was getting continuously to see how he would do. He did Great! So Today 6.10.2017 we stopped the continuous dose completely. With that comes a little bit of the effects of withdrawals, such as the shakes, irritability, and pain. They did not take this med away completely. We are still able to give T a push of pain meds here and there if needed.

Along with that, in order to be discharged T has to be doing well at taking his other meds orally and swallowing them! This is probably the hardest part because T will take the meds but then he will hold them in his mouth..... FOREVER! Also, he will sometimes lose meds by throwing them up, or eventually drooling them out because he holds them for too long in his mouth. We have the hardest time getting him to swallow his meds. There are alternative options to getting him these meds and that will be what's called an "NG Tube." This will also help us to be able to help him get the nutrition that he needs, AND help his stomach to wake back up and start working again. This is most likely what will happen.

With all of that, the doctors goal is try is to try and get us out of here by NEXT WEEK!! AHH that makes me so happy but at the same time nervous!! He will be much more happy and be able to go outside. However, that also means more chances of germs that could make him sick and we could end up back in the hospital. His immune system is still very low and weak but should continue to make its way up and get stronger, it just takes time getting it there. We will have multiple follow -up doctors appointments in the following weeks up to Day 100. If all goes well between now and then, around day 100 we should be able to get back home to St.G


**** TO TANNER: OH MY SWEET BOY! I am so excited for you! We have come a long way to this point and we still have a ways to go but it has been 100% worth it. You have been such a great little boy. Besides taking your medications, you have been a dream patient in my eye and I think all the eyes of the nurses. All of the nurses fight over you! They will call in the day before their shifts and request you as their patient. If they don't get you, they will still come in and check on you. They all want you to marry their baby girls. You better still be a good boy growing up so you can marry one of them because meeting their moms I would be 100% GREAT with you to marry one of their daughters. T I am so glad I was able to go on this journey with you, but can you make me a promise?... Well OK you really can't, but lets not do this again!! It wasn't fun. It was hard, but it was a blessing and life changing experience. We ALL have grown so much from this experience and if I had to do it over again for you, I would do it without hesitation and not change ONE THING. I LOVE YOU TANNER BOY! Stay strong and brave in all your days! XOXO MOM!


Pictures of our Day today! 6.10.2017

Week 3 (Days +10-18)

Not much has changed from the last update. Although T is feeling ALOT better from the effects of chemo. T has done lots of sleeping, playing and snuggling this last week. We are waited patiently each morning wait for labs to come in hoping that his counts would start to make their way up. Each day I think it got harder and harder for me to wait. I just want them to start to work there way up. We did have a glimpse of hope on last Saturday. They did start to up and we thought we were on the start of going up, but then Sunday they dropped back down. This is 100 % normal to do with BMT! His WBC that are coming in are working so hard to help him heal from the effects of chemo, that is their main focus. T has been in great spirits and been so playful that it hard to remember what is going on this body and remember that his body is still super low on counts when he is super happy! T has become a Pro at wiping off his face and sucking out his spit that he does not want to swallow!

We survived the week without Dad thanks to family! My sisters were awesome at coming up and giving me a break to run to the store, lay down for a bit or to just visit. We also got a visit from G&G Jolley and Caroline! This time with them was great for T! Especially having Caroline there! T seemed to brighten up the moment she walk in the door! Grandma Janny and Hailey also came to see us. This was a great chance for me to be able to go and spend time for with Caroline. So what else do girls like to do. We went shopping! We went to build a bear and let C build a animal for Her and T! She had a blast doing it. Picking out what she wanted and she wanted to give T was hard for her. But once she decided it was much better after that! She pick out a Sky Puppy (Paw Patrol) for her and a Baseball Bear for T. This was such a great time away from the hospital and also a great time for G&G Jolley to spend time with Tanner!


****TO TANNER: Hey Buster Boy! Thanks for a great week with just me and you! You are doing great through all of this and it just makes my mommy heart so happy! You loved to snuggle a lot this last week and I soaked up every minute of it. I have a feeling that when we are all done with this then you will not want to snuggle as much! Your little body is working so hard to get better and all I can do is sit here and play with you, love you, snuggle you, and help you with your pain control! I wish there was something more that I could do for you! Just know that I am always trying to help you and praying like crazy (along with a million other people) for your counts to start to come up and that we can get you out of room! You are dying to get out. You LOVE to look out the window at watch for the helicopters to come and I bet in you little mind you are thinking that you just want to go out there and play so bad! Keep staying strong in all you do! LOTS OF LOVE MOM!

 T having a rough MOMENT this last week!

 T Loves to play Peek-a-boo with his blankets

 MY BLANKET!

 LOVE LOVE LOVE

T would not go to sleep one night. He was awake till about 11 this night and just would keep sitting up and playing in his crib and talking and clapping his hands!