Thank you sleep gods! I was able to catch a nap for the first time in days yesterday! Oh it was glorious! Zoë also SLEPT. She was out for nearly 12 hours during the day, and then slept for another 5 or so last night after midnight.
We had a relatively quiet night after her big test. She had only one epic puke, and mommy is getting so much better at aiming the projectile vomit that I did not get it on me at all! She is still not understanding the capacity of her stomach. It also does not help that she is getting breast milk through the NG tube as well. Plus the sterile water flushes, and meds, not to mention the tumor still taking up room and not letting her have as much space
for her stomach to expand.
Zoë is still fighting the NG tube. I secretly hope she is able to yank it out again, in the hopes that the doctors will let her keep it out.
Her left kidney tube has been clamped closed. So we will be watching her for fever, and starting to see her pee hopefully. Getting the news about her right ureter yesterday was very hard for me. I really hope that this next round of chemo (tentatively scheduled for mid week next week) will shrink the tumor enough to relieve the kidney and ureter enough that she is able to get urine to pass to her bladder. My biggest fear is that the tumor has taken over the ureter and she will need a surgery to reconnect the bladder to the ureter.
The doctors want to discuss the next chemo treatment options with Zeppo and I before the end of this week so that they have a set plan for next week. I never thought I would be anxious to get drugs into my little one, but I cannot wait for her to start her next round to get this tumor to hopefully shrink more. I have seen how hard it is on her post chemo, the uncomfortableness, the nausea, the fever, and that is just the mild side effects. I hate to think that she could start dealing with more pain. But at the same time the faster we can get to surgery the better her chances are to kick this.
I was under the assumption that Zoë would need the full 10 rounds of chemo before surgery. But now it is my understanding that it may happen way sooner than that, as soon as after the second or third round even. Not to say that it won't take until the fifth or sixth...but it just sounds like it could happen sooner than later. Again the thought of my daughter being put under anesthesia and cut open for this procedure scares the pants off of me. We
do know that she handles the anesthesia well, so that is a plus, and we know that she handles pain like a champ. I just know what it is like to be cut open for surgery and how painful it is. My empathy is in over drive, and it makes my mind, and body ache for her.
So where has my focus been to gather some good thoughts to go on in the past 24 hours. I wander 6 East to drop off my dinner tray, or get milk and water from the kitchen, and I pass by the room board. This has the listing of all of the patients and their assigned nurses and doctors. Everyday this board changes, and every time a room is open it
makes me feel so good. It means that one more child is home and feeling better. I hate to see the rooms fill up, or hearing a nurse say that they are getting an admission. I can also see our old room window and I have watched it stay empty for several days, as well as other rooms in the PICU. Every time they are empty it warms my heart to know that there isn't a child suffering there.
As the nurses go off shift they always say goodbye to me as though we will never meet again. Most say they hope to see Zoë and me because they like us, and enjoy taking care of her. But their true hope is that we will be discharged before their next shift. I understand this feeling of wanting to see them again, but not. I miss our nursing staff from the PICU and as soon as Zoë can take a little trip we will go upstairs to say hello to them hopefully.
The doctors were hoping to get us home for the weekend, but now with Zoë's kidney issue we will probably be here until after her next chemo treatment. This is just fine with me. I don't want to rush home. I want to be sure that
she is completely in the clear and ready. We will have visiting nurses, but it will not be like I can push a button and have help rush in. I am feeling like a brand new mom all over again (not that I was not a brand new mom only 2+ months ago or anything). It will be like I am taking her home for the first time all over again. I may have diaper changing, down, but everything else will have to be learned again. How to bathe her, and dress her over her wounds, how to care for her new needs..... The thought of it is overwhelming at times.
So how do I cope? Well last night and this morning I used the international comfort food.... :) Can anyone say chocolate cake and ice cold milk for breakfast? Mmmmm.... Yeah that's right.
Today Zeppo and my Mom will be up at the hospital too. This will be a huge help for me, as I maybe able to
get some of the paperwork that I need to done. Plus get some nap time in? But
best of all some good hugs. :)
Zoë just passed out...so you know what
that means.... She will notice when my head hits that pillow. ;P
Love and Hugs!!
We had a relatively quiet night after her big test. She had only one epic puke, and mommy is getting so much better at aiming the projectile vomit that I did not get it on me at all! She is still not understanding the capacity of her stomach. It also does not help that she is getting breast milk through the NG tube as well. Plus the sterile water flushes, and meds, not to mention the tumor still taking up room and not letting her have as much space
for her stomach to expand.
Zoë is still fighting the NG tube. I secretly hope she is able to yank it out again, in the hopes that the doctors will let her keep it out.
Her left kidney tube has been clamped closed. So we will be watching her for fever, and starting to see her pee hopefully. Getting the news about her right ureter yesterday was very hard for me. I really hope that this next round of chemo (tentatively scheduled for mid week next week) will shrink the tumor enough to relieve the kidney and ureter enough that she is able to get urine to pass to her bladder. My biggest fear is that the tumor has taken over the ureter and she will need a surgery to reconnect the bladder to the ureter.
The doctors want to discuss the next chemo treatment options with Zeppo and I before the end of this week so that they have a set plan for next week. I never thought I would be anxious to get drugs into my little one, but I cannot wait for her to start her next round to get this tumor to hopefully shrink more. I have seen how hard it is on her post chemo, the uncomfortableness, the nausea, the fever, and that is just the mild side effects. I hate to think that she could start dealing with more pain. But at the same time the faster we can get to surgery the better her chances are to kick this.
I was under the assumption that Zoë would need the full 10 rounds of chemo before surgery. But now it is my understanding that it may happen way sooner than that, as soon as after the second or third round even. Not to say that it won't take until the fifth or sixth...but it just sounds like it could happen sooner than later. Again the thought of my daughter being put under anesthesia and cut open for this procedure scares the pants off of me. We
do know that she handles the anesthesia well, so that is a plus, and we know that she handles pain like a champ. I just know what it is like to be cut open for surgery and how painful it is. My empathy is in over drive, and it makes my mind, and body ache for her.
So where has my focus been to gather some good thoughts to go on in the past 24 hours. I wander 6 East to drop off my dinner tray, or get milk and water from the kitchen, and I pass by the room board. This has the listing of all of the patients and their assigned nurses and doctors. Everyday this board changes, and every time a room is open it
makes me feel so good. It means that one more child is home and feeling better. I hate to see the rooms fill up, or hearing a nurse say that they are getting an admission. I can also see our old room window and I have watched it stay empty for several days, as well as other rooms in the PICU. Every time they are empty it warms my heart to know that there isn't a child suffering there.
As the nurses go off shift they always say goodbye to me as though we will never meet again. Most say they hope to see Zoë and me because they like us, and enjoy taking care of her. But their true hope is that we will be discharged before their next shift. I understand this feeling of wanting to see them again, but not. I miss our nursing staff from the PICU and as soon as Zoë can take a little trip we will go upstairs to say hello to them hopefully.
The doctors were hoping to get us home for the weekend, but now with Zoë's kidney issue we will probably be here until after her next chemo treatment. This is just fine with me. I don't want to rush home. I want to be sure that
she is completely in the clear and ready. We will have visiting nurses, but it will not be like I can push a button and have help rush in. I am feeling like a brand new mom all over again (not that I was not a brand new mom only 2+ months ago or anything). It will be like I am taking her home for the first time all over again. I may have diaper changing, down, but everything else will have to be learned again. How to bathe her, and dress her over her wounds, how to care for her new needs..... The thought of it is overwhelming at times.
So how do I cope? Well last night and this morning I used the international comfort food.... :) Can anyone say chocolate cake and ice cold milk for breakfast? Mmmmm.... Yeah that's right.
Today Zeppo and my Mom will be up at the hospital too. This will be a huge help for me, as I maybe able to
get some of the paperwork that I need to done. Plus get some nap time in? But
best of all some good hugs. :)
Zoë just passed out...so you know what
that means.... She will notice when my head hits that pillow. ;P
Love and Hugs!!
RSS Feed