So much has been happening in the past few days that I have barely had any time to breath, or eat, or shower, or sleep… So needless to say I have also not had any time to write either. Especially since I am also focused on
keeping up with all the amazing people out there requesting to be added to Zoë’s Prayer Map, and those awesome folks who have donated to Zoë’s Fund.
I have been trying to keep up with thank you notes, and emails back to all those who have sent a letter to Zoë, and I am behind in that as well. So for those who have sent a message to Zoë in the past few days thank you so much, and I hope to respond soon.
So what have our days been like? Well Zoë on chemo is just like having a sick infant….oh wait that is right she is sick. So she cannot settle, she flails around with her arms and legs, and is vocal with grunts, and moans, and unhappy sounds. She has a very hard time getting comfortable, and getting to sleep. But once she does fall asleep she tends to sleep for a while, that is if she is not woken up by all of the extra vitals the nurses need, or hospital noises, or doctors rounding, or her mommy tearing open an envelope. Seriously! How is it with all of the bells, and noises in the hospital the sound of tearing paper will wake her up faster than anything. So not much
sleeping either…
We received Zoë’s tentative surgery date the other day. February 23, 2012 will be here in just a few short seventeen days. So in this time she needs to overcome all of the side effects of this round of chemo, and be back to her “healthy” state for the procedure.
It was looking like she was going to be going home on Wednesday of this week after some intensive training on Zeppo and my part. However, today/tonight we ran into some road blocks that I think will have her here longer.
Zoë started throwing up a lot this afternoon, and her belly became completely distended. Her belly button which had been looking spectacular was back to popping out, and she had the appearance of a “beer belly”. The nutritionists are still trying to chunk Zoë up. She is on a breast milk and formula mix that has 36 calories per ounce,
which is 16 calories an ounce more than she gets on breast milk alone. She is also on twenty-four hour feeds,
and was getting 12 milliliters an hour. Two days ago she was upped to 13 milliliters an hour. You would think this is no big deal but when you calculate it all out it is a much greater volume. So needless to say after about 36 hours of 13 milliliters an hour Zoë becomes so full of food that she had “beer belly”, and cannot keep anything down when
nursing.
Her condition got so bad this evening that she has x-rays done to insure that she had a normal looking gut. Which came back that she did look “normal”but had a ton of air, and gas, and food in her system. So we backed off of feedings and hoped that she would just digest and pass everything along.
After some routine blood work it also became apparent that she was a bit low on blood. So she also received blood from one of her wonderful donors. We don’t know who, and cannot find out due to privacy laws and such. But we do know that it was someone who donated to her. So big thanks again to those who came all the way out to Children’s to give blood!
This evening was hard to get through, and it had nothing to do with the football game. Telling a baby that she cannot nurse because her brain and mouth wants to is hard. Even with her lower belly being so full she still wants to nurse. So there was lots of meditative dancing, and singing this evening to settle her.
Two AM, and Zoë was back up. This time her belly was a lot lower, she had some major poops, and was looking to nurse. The doctors thought she had enough of a break from eating, so they let me nurse her. Well when she puked it all back up again we found out why that was not a good idea. Then there was the matter of her last diaper. She had blood in her last stool…
Testing was done on it to try to determine where the bleeding is coming from it appears to be mucositis in the lower half of her digestive track.
Definitions:
Mucositis – is the painful inflammation and ulceration of the mucous membranes lining the digestive tract, usually as an adverse effect of chemotherapy and radiotheraphy treatment for cancer. Mucositis can occur anywhere along the gastrointestinal (GI) tract, but oral mucositis refers to the particular inflammation and ulceration that occurs in the mouth. Oral mucositis is a common and often debilitating complication of cancer treatment. Oral and GI mucositis affects almost all patients undergoing high-dose chemotherapy.
So as you can imagine after reading that definition just how Zoë is feeling tonight.
She is now on food restrictions until the morning, and is getting fluids via her broviac. She is also on Ativan and
morphine. I don’t get the good stuff…but I am running on adrenaline, and the restorative powers of a hot shower.
So with all this said you might say that Zoë is having a bad day.
I bet many people (especially Pat’s fans) thought that they were having a bad day. But I can tell you that I am NOT having a bad day. I don’t think that I know what a bad day is anymore. Unlike most people I can tell you the exact day, time, and moment of the worst day of my life. December 29, 2011 will forever more probably be the worst day of my life.
Having a child with cancer makes you think. It makes you look at the world in a whole new light. It makes a lot of what happens in day to day life seem so trivial. So insignificant. For instance, were you really upset by the Pat’s loosing? Did it ruin your day? I did not even notice the game was on for the last quarter, and the TV was only 5 feet from me.
I look on Facebook and I will admit that it gets harder and harder to read posts, because I am feeling detached from the ability to gripe, or complain about the ordinary. How can I complain about a headache, or be miffed if someone cut me off on the highway or “want a drink” because I had a hard day in the office? What is a hard day in the office? Got behind on a deadline? Boss tell you you’re not working up to your potential? I don’t know. I would love
to have a “hard day” in the office. I would love to go into work and be able to get lost in a pile of emails, and paperwork.
Is today a bad day? No. I danced with my baby until she fell asleep. I took beautiful pictures of her when she was playing, and sleeping. I held her in the big blue chair and I sniffed her freshly washed head. I watched her drift off into dreamlandia which must be a wonderful place because I watched her smile in her sleep.
Today was a great day!
This post is brought to you by the power of a new
perspective. I pray that you never
have to see life from my point of view.
But I do hope that at the end of each day you too can realize that you
did not have a bad day.
Love and Hugs
keeping up with all the amazing people out there requesting to be added to Zoë’s Prayer Map, and those awesome folks who have donated to Zoë’s Fund.
I have been trying to keep up with thank you notes, and emails back to all those who have sent a letter to Zoë, and I am behind in that as well. So for those who have sent a message to Zoë in the past few days thank you so much, and I hope to respond soon.
So what have our days been like? Well Zoë on chemo is just like having a sick infant….oh wait that is right she is sick. So she cannot settle, she flails around with her arms and legs, and is vocal with grunts, and moans, and unhappy sounds. She has a very hard time getting comfortable, and getting to sleep. But once she does fall asleep she tends to sleep for a while, that is if she is not woken up by all of the extra vitals the nurses need, or hospital noises, or doctors rounding, or her mommy tearing open an envelope. Seriously! How is it with all of the bells, and noises in the hospital the sound of tearing paper will wake her up faster than anything. So not much
sleeping either…
We received Zoë’s tentative surgery date the other day. February 23, 2012 will be here in just a few short seventeen days. So in this time she needs to overcome all of the side effects of this round of chemo, and be back to her “healthy” state for the procedure.
It was looking like she was going to be going home on Wednesday of this week after some intensive training on Zeppo and my part. However, today/tonight we ran into some road blocks that I think will have her here longer.
Zoë started throwing up a lot this afternoon, and her belly became completely distended. Her belly button which had been looking spectacular was back to popping out, and she had the appearance of a “beer belly”. The nutritionists are still trying to chunk Zoë up. She is on a breast milk and formula mix that has 36 calories per ounce,
which is 16 calories an ounce more than she gets on breast milk alone. She is also on twenty-four hour feeds,
and was getting 12 milliliters an hour. Two days ago she was upped to 13 milliliters an hour. You would think this is no big deal but when you calculate it all out it is a much greater volume. So needless to say after about 36 hours of 13 milliliters an hour Zoë becomes so full of food that she had “beer belly”, and cannot keep anything down when
nursing.
Her condition got so bad this evening that she has x-rays done to insure that she had a normal looking gut. Which came back that she did look “normal”but had a ton of air, and gas, and food in her system. So we backed off of feedings and hoped that she would just digest and pass everything along.
After some routine blood work it also became apparent that she was a bit low on blood. So she also received blood from one of her wonderful donors. We don’t know who, and cannot find out due to privacy laws and such. But we do know that it was someone who donated to her. So big thanks again to those who came all the way out to Children’s to give blood!
This evening was hard to get through, and it had nothing to do with the football game. Telling a baby that she cannot nurse because her brain and mouth wants to is hard. Even with her lower belly being so full she still wants to nurse. So there was lots of meditative dancing, and singing this evening to settle her.
Two AM, and Zoë was back up. This time her belly was a lot lower, she had some major poops, and was looking to nurse. The doctors thought she had enough of a break from eating, so they let me nurse her. Well when she puked it all back up again we found out why that was not a good idea. Then there was the matter of her last diaper. She had blood in her last stool…
Testing was done on it to try to determine where the bleeding is coming from it appears to be mucositis in the lower half of her digestive track.
Definitions:
Mucositis – is the painful inflammation and ulceration of the mucous membranes lining the digestive tract, usually as an adverse effect of chemotherapy and radiotheraphy treatment for cancer. Mucositis can occur anywhere along the gastrointestinal (GI) tract, but oral mucositis refers to the particular inflammation and ulceration that occurs in the mouth. Oral mucositis is a common and often debilitating complication of cancer treatment. Oral and GI mucositis affects almost all patients undergoing high-dose chemotherapy.
So as you can imagine after reading that definition just how Zoë is feeling tonight.
She is now on food restrictions until the morning, and is getting fluids via her broviac. She is also on Ativan and
morphine. I don’t get the good stuff…but I am running on adrenaline, and the restorative powers of a hot shower.
So with all this said you might say that Zoë is having a bad day.
I bet many people (especially Pat’s fans) thought that they were having a bad day. But I can tell you that I am NOT having a bad day. I don’t think that I know what a bad day is anymore. Unlike most people I can tell you the exact day, time, and moment of the worst day of my life. December 29, 2011 will forever more probably be the worst day of my life.
Having a child with cancer makes you think. It makes you look at the world in a whole new light. It makes a lot of what happens in day to day life seem so trivial. So insignificant. For instance, were you really upset by the Pat’s loosing? Did it ruin your day? I did not even notice the game was on for the last quarter, and the TV was only 5 feet from me.
I look on Facebook and I will admit that it gets harder and harder to read posts, because I am feeling detached from the ability to gripe, or complain about the ordinary. How can I complain about a headache, or be miffed if someone cut me off on the highway or “want a drink” because I had a hard day in the office? What is a hard day in the office? Got behind on a deadline? Boss tell you you’re not working up to your potential? I don’t know. I would love
to have a “hard day” in the office. I would love to go into work and be able to get lost in a pile of emails, and paperwork.
Is today a bad day? No. I danced with my baby until she fell asleep. I took beautiful pictures of her when she was playing, and sleeping. I held her in the big blue chair and I sniffed her freshly washed head. I watched her drift off into dreamlandia which must be a wonderful place because I watched her smile in her sleep.
Today was a great day!
This post is brought to you by the power of a new
perspective. I pray that you never
have to see life from my point of view.
But I do hope that at the end of each day you too can realize that you
did not have a bad day.
Love and Hugs
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