I am sitting in the surgery waiting room flooding with emotions. I haven't been alone or out of Taleah's sight for a while now. My mom went to get the requested Cafe Rio. I am surrounded by families with children in "similar boats" as us. I don't know all of their stories but I can see the hurt, anxiousness and hope in their eyes. They are probably feeling similar feelings as I. This is so hard. Leaving her on that bed again and watching her be wheeled into the OR is something I will NEVER forget. I just felt that... 2 weeks ago... and here we are again. And will be doing it again on Wednesday.
The night went ok minus the fasting portion. Luckily the Benadryl helped her sleep from 3am-9am. At the point, I was told we would have spoken to the doctors and had a game plan. Wasn't the case... we saw a resident around 9:30. By 10:30am she had contacted infectious disease and the OR. We were told that the line would have to be taken out due to the kind of infection...staph. We would have to be without the port for 2 days and then she could have a PICC line placed. After that we could go home... as long as all things go as planned. I hate to think that we won't be that lucky but I am trying to think positive. The best news of the day was that she didn't have to be intubated to have the port removed or the PICC line placed (which was the hardest part of her surgery before). I was so relieved... one good thing. We were placed as an "add on" for the OR and we all know how that goes. I begged and pleaded to get her on asap...probably just like every other add on parent. BUT she is 2 years old and on steroids... how on earth is she supposed to understand all of that...? I am doing my best to explain things to her because she wants to know everything. It just feels like a lot of explaining for a 2 year old. Trying to explain why she couldn't eat ALL DAY LONG was tricky (especially because of the steroids). Side note... she did receive the scheduled dose of vincristine(chemo) today. So at least we are not too far behind.
She is now out of surgery. She was screaming for food when she woke up. She screamed in my arms for 1 hour. It literally ripped my heart in half. I could tell she was wanting to swing at my face, but she didn't. I couldn't get her to eat after the first initial breadstick because she was SCREAMING. I felt helpless yet again... nothing I could do. Tracine was nice enough to bring her request of Cafe Rio and Treena to bring the pizza factory. When she finally ate she was acting more herself...just tired. She has been requesting aunt grammy (Treena). Treena has been sending funny pictures to Taleah all day to make up for her not being here. She is coming tonight though and Taleah couldn't be more happy.
The infectious disease doctors came to chat. Her staph infection is pretty serious and can be pretty serious if it is in her blood for a long period of time. As of now, it looks like it was there for 2 1/2 days. He also said that they recommend an echo to make sure her heart valves have not been affected. Apparently this infection can damage those and then we run into some problems (please don't let that be us). One good piece of info... the last culture they drew from her port has not grown anything. Hoping that means that it is not there anymore and the antibiotics is working. Praying that it still doesn't grow anything and we can move forward. They will not put the PICC in until there have been 48 hours of negative cultures. I am praying/hoping that it doesn't grow and we can have the PICC on Wednesday and then come home. We will be able to do her second vincristine treatment in STG next Monday and then we will be up for a BIG day (LP,bone marrow, IT chemo and port placed). Hoping we can do it all in one surgery slot to reduce the risks of so much anesthesia.
As for now, we are here. Trying to keep her happy/comfortable. Sad to say but I think she is getting used to staying in the hospital room. She actually requested to go back to her room when we were eating outside today. I wanted to say that it's not "your room"... just somewhere we are staying... but I didn't. Sad.
Her labs from this morning showed that her counts have dropped a little, but that is to be expected from the chemo. Her cheeks are getting more and more puffy along with her belly. She now weighs 32 pounds (a gain of 2 pounds). Still no fever and so glad.
Aunt Grammy is on her way to play. Hoping the night goes well. Miss being home. Miss my hubby and baby boy. Miss nursing him (hate pumping). Miss my bed. BUT... at least she is doing well... at least she wants to sleep right next to me.... at least she grabs my hand in the middle of the night while she is sleeping... at least Slade is being taken care of by the Stevensons... at least my co workers are so understanding... at least I have a baby girl to worry about.
The night went ok minus the fasting portion. Luckily the Benadryl helped her sleep from 3am-9am. At the point, I was told we would have spoken to the doctors and had a game plan. Wasn't the case... we saw a resident around 9:30. By 10:30am she had contacted infectious disease and the OR. We were told that the line would have to be taken out due to the kind of infection...staph. We would have to be without the port for 2 days and then she could have a PICC line placed. After that we could go home... as long as all things go as planned. I hate to think that we won't be that lucky but I am trying to think positive. The best news of the day was that she didn't have to be intubated to have the port removed or the PICC line placed (which was the hardest part of her surgery before). I was so relieved... one good thing. We were placed as an "add on" for the OR and we all know how that goes. I begged and pleaded to get her on asap...probably just like every other add on parent. BUT she is 2 years old and on steroids... how on earth is she supposed to understand all of that...? I am doing my best to explain things to her because she wants to know everything. It just feels like a lot of explaining for a 2 year old. Trying to explain why she couldn't eat ALL DAY LONG was tricky (especially because of the steroids). Side note... she did receive the scheduled dose of vincristine(chemo) today. So at least we are not too far behind.
She is now out of surgery. She was screaming for food when she woke up. She screamed in my arms for 1 hour. It literally ripped my heart in half. I could tell she was wanting to swing at my face, but she didn't. I couldn't get her to eat after the first initial breadstick because she was SCREAMING. I felt helpless yet again... nothing I could do. Tracine was nice enough to bring her request of Cafe Rio and Treena to bring the pizza factory. When she finally ate she was acting more herself...just tired. She has been requesting aunt grammy (Treena). Treena has been sending funny pictures to Taleah all day to make up for her not being here. She is coming tonight though and Taleah couldn't be more happy.
The infectious disease doctors came to chat. Her staph infection is pretty serious and can be pretty serious if it is in her blood for a long period of time. As of now, it looks like it was there for 2 1/2 days. He also said that they recommend an echo to make sure her heart valves have not been affected. Apparently this infection can damage those and then we run into some problems (please don't let that be us). One good piece of info... the last culture they drew from her port has not grown anything. Hoping that means that it is not there anymore and the antibiotics is working. Praying that it still doesn't grow anything and we can move forward. They will not put the PICC in until there have been 48 hours of negative cultures. I am praying/hoping that it doesn't grow and we can have the PICC on Wednesday and then come home. We will be able to do her second vincristine treatment in STG next Monday and then we will be up for a BIG day (LP,bone marrow, IT chemo and port placed). Hoping we can do it all in one surgery slot to reduce the risks of so much anesthesia.
As for now, we are here. Trying to keep her happy/comfortable. Sad to say but I think she is getting used to staying in the hospital room. She actually requested to go back to her room when we were eating outside today. I wanted to say that it's not "your room"... just somewhere we are staying... but I didn't. Sad.
Her labs from this morning showed that her counts have dropped a little, but that is to be expected from the chemo. Her cheeks are getting more and more puffy along with her belly. She now weighs 32 pounds (a gain of 2 pounds). Still no fever and so glad.
Aunt Grammy is on her way to play. Hoping the night goes well. Miss being home. Miss my hubby and baby boy. Miss nursing him (hate pumping). Miss my bed. BUT... at least she is doing well... at least she wants to sleep right next to me.... at least she grabs my hand in the middle of the night while she is sleeping... at least Slade is being taken care of by the Stevensons... at least my co workers are so understanding... at least I have a baby girl to worry about.
Sweet girl - that is a long time to have to fast! Glad the surgery went well and glad you didn't end up having to go up in the ambulance last night!
ReplyDeleteI love the blessing count at the end of this...she is amazing! Thanks for sharing her strength with us.
ReplyDeleteI have absolutely loved reading about your sweet little warrior! It's been so great being able to talk to the dhhs cheerleaders and hear more about Taleah and her story!
ReplyDeleteMy name is Chelsey, I'm on the dhhs drill team. Being able to sign that giant card for Taleah was so cool! I love learning about strong children like her, because I can relate so closely.
When I was three years old, I was diagnosed with Cystic Fibrosis. Since then, i've had 41 surgeries and 14 picc lines. I remember going up to PCMC almost every week, it wasn't something that was easy on my parents who had just had another baby. Looking back though, that experience was such a blessing in my life.
Taleah is in my thoughts and prayers daily! Keep fighting cutie!
Thought about you all day yesterday. I hope the next few days go as planned and you get a picc line and get to come home.
ReplyDelete