T+27 32 days in Hospital. Liv is so excited to be on the phone with Mom telling her that they removed her feeding tube and disconnected her iv pole this morning! Now she will need to work hard to hit the fluid goal they have set for her. 1 step closer to busting out of here!!!
Liv is doing great! She continues to eat and drink a little more each day. She is able to taste most things she tries, not back to normal taste buds but getting there. They are continuing to wean her from the pain meds. She does not have much pain but they have to take her down slowly. We are very hopeful to get out this week!!!
Another good day! ANC continues to go up! Liv had school this morning followed by physical therapy! This afternoon she had art therapy followed by a good nap. She did get sick tonight but is resting well now.
We continued our mission of finding some food that she can taste! We made a little progress but she still has not eaten a lot. It will take a little time but she is gaining. She does still like her lemonade!
Liv had another very good day! It was the first day in a long time that she woke up feeling pretty good. That was followed closely by a morning puke and short nap but the rest of the day continued to get better. She met with one of the teachers on staff at Riley to get setup for her online learning. In the afternoon she walked the halls and rode the exercise bike.
We spent part of the afternoon trying to find some type of food that she would like to eat. Her taste buds will take a long time to heal so we were looking for strong flavored foods. She did not eat much but it is a big step just to have the desire to start trying food. I think this will continue to grow over the next few days! Making big progress!
God is good!!!
Every morning we look forward to a doctor and a nurse practitioner coming by to review Liv’s health. Every morning they go over every detail from the day before, all of her lab results and plans for the day. They always take all the time we want to answer all of our questions and to make sure we are comfortable with what is going on. We are so grateful for all of the Riley staff!
This morning started out very uncomfortable again for Liv. We got some good news when the doctors talked about things that need to happen before we go home! I thought this was great news because it means Liv is improving fast. After the doctors left Liv got pretty upset because the thought of going home feeling miserable did not sound so good to her. I had to remind her that they will not send her home feeling so bad. The doctors can tell that she will be feeling better soon. We are hopeful that early next week Liv may be able to leave the hospital and move to our apartment that is nearby!
This afternoon OT (occupational therapy) came and got Liv up to walk the halls and play a game! After that she has stayed in a chair for quite awhile watching Netflix. She has been drinking some juice and even tried a bite of yogurt! The yogurt had no taste to her and she decided not to try anything else tonight. She had a very good afternoon! I expect tomorrow morning to start a little ruff again but there is no doubt she is quickly improving!!
1 of the hardest parts of this disease is the toll it takes on families. Always a hard day when part of the family goes home and part stays at the hospital. This does not only happen to the Stoy family this happens to all families!
Liv continues to heal well and the doctors are happy with what they are seeing! The unfortunate part for Liv is the days continue to get more uncomfortable. She is nauseous most of the time and throws up several times through the day. The doctors say this is pretty common for this stage. We know that better days are ahead!
God is good!!!
Olivia Update Day +16:
*ANC of 84
*Received one unit of blood this morning
*Receiving one unit of platelets tonight
*Pain in feet is getting a little better
*Now fingers hurt like feet
*Mouth and throat are better but still just taking a few sips of water a day.
*Continuing to receive nutrition through feeding tube
*Receives 1 liter of oxygen when she sleeps
*Activity for today was occupational therapy for 30 minutes, music therapy for 45 minutes, walking the halls once today, visiting with cousins
I can tell Liv is feeling a little bit better! She likes to print out a picture for each day she is in the hospital. She has not been feeling well enough to do it but this afternoon she took some time to get caught up!
(Below is the quick report I sent to Megan after the doctors rounded this morning)
Doctors think everything looks great. Pretty confident she is a day or 2 from having counts, right on schedule. Lungs sound good oxygen is from airway gunk. Morning puke is pretty normal with her age group because of swallowing all the nasty stuff while they sleep, probably will continue for quite awhile. When she heals to the point of wanting to eat it will likely be very bold foods that she doesn’t normally want. Most popular is potato chips. Dr said you would think they would want soft food but all soft food will have no flavor to them.
So much time in the hospital builds special bonds with the nurses!
Emily brought this awesome gift for Liv today! Emily is a strong fighter like Liv, they have both had some ruff roads to travel but they both have tremendous attitudes! Check out her journey on Facebook at emmystrong.
Liv is feeling decent this afternoon! Still lots of ups and downs but we love to see the good times. PT (physical therapy) is coming in to work with Liv today. They come in periodically to do some exercises to help keep Liv’s body in shape. They will work with what ever activity level you are able to achieve. I reminded Liv that they would be in at 3:30, typical of her she always wants to do her best so she asked for her tennis shoes! She never lacks ambition and is a model patient!
The doctors still say she looks good and her body shows signs of healing! All of the pain she has is par for the course! Hopefully she will be better soon!
Thank you all for following!!!
Liv has an ANC! This is a number that basically represents her immunity. The radiation and chemo ahead of the transplant take this to 0. It takes several days or weeks for the new cells to begin growing. Today an ANC of 18 means it is the first sign of the new cells doing something. Still a very long way to go but this is an exciting step! When Liv’s ANC is above 500 and some other criteria are met she will be able to leave the hospital.
Liv still has pretty severe mucusitos which causes severe pain in her mouth. She is on morphine and has not eaten or drank for 8 days. Can not swallow and her saliva looks like thick glue. You can imagine how much fun that is! She does not talk much because of the pain so she uses a white board to communicate. She also has a lot of heal pain that is caused from the chemo affecting her nerves. Overall she is the most miserable that I have seen her in any of her hospital stays. She was worse this winter while in icu but she didn’t know because she was heavily sedated.
Even with the pain Liv always finds a way to make the best of her day. She takes advantage of moments when she feels decent to do things like share gifts with other kids on her floor, ride an exercise bike, watch Netflix, catch up on social media, art therapy and of course fight through the pain to give the best smile she can give with a big thumbs up!!
We believe the bottom is near and Liv will begin feeling better soon. Thank you everyone for following her story!