Before you begin reading this post, I warn you that this may not
be the post to read with your children. Please, if you continue to
read, do so alone before sharing with any children. This carepage
is a way for us to share Izzy's path with others, but it is also my
digital scrapbook and journal. We've had some pretty hard things to
address lately and Phin and Izzy are not even privy to all of it.
But I need to remember when things happened and how they happened
in future. That being said, this post is better suited to an adult
audience because nuance, planning for the future, and tact are
skills most children do not have in abundance.
Izzy's pain has not subsided, but is not as frequent. We did get her vomiting almost under control by giving her regular doses of zofran (anti-nausea med) every morning when she wakes. That has been helping in the car, even after school since it is long-acting. There is no answer on the tummy pains though. Izzy's GI doctor has no answers and her cardiologist blames GI. The pulmonologist couldn't believe Izzy was allowed to be in horrible pain for three months without help, so he pushed the issue with the cardiologist and GI doc. In the meantime, the hospice doctor decided we can help ease the pain while the others duke it out to find a cause. Granted, all of this rigamarole took about a week and a half, lots of phone calls by me, heartache, and Izzy saying she no longer wanted to be Izzy because of the pain.
But, as of Monday, we are to give Izzy half a dose of morphine when the pain comes. Surprisingly, Izzy went until this morning before she had the pain again. It was miserable for us watching her in pain, but must have been so much worse for her. Thankfully, about twenty minutes after getting the morphine, Izzy was Izzy again. She did a complete 180. Of course, one time does not prove anything, but I have hope that this will help. Even better, it didn't seem to make Izzy sleepy! And all of the concerns and worries I had about using morphine at home slipped away when I saw Izzy go from a heap, moaning in pain, to jumping around and smiling. We will, of course, continue to follow up with the doctors, but at least we can ease Izzy's pain while they figure out who is going to try to do something to ascertain the cause of the pain.
In line with Izzy's seeming decline, we've been pushed into making more painfully hard decisions. This morning, the hospice social worker and hospice spiritual adviser met with Dale and I for an extended meeting to discuss funeral planning. The kids do not know why the hospice team was here, other than making sure mommy and daddy's worries are addressed just like Phin and Izzy's worries are addressed. Because the kids do not know, we ask that you not discuss this with them. I am quite certain that Izzy's cardiologist would be adamant that we not start funeral planning now, but she hasn't been living with what we have for the last several months. The reason for planning now is to free us later when there will be no choice and all we want is to be with Izzy and Phin. With luck, we will not need to put these plans into effect for a very long time, but heart disease does not necessarily follow a playbook and it is better to be prepared, than to be forced into tough decisions at the worst time in our lives. So, the hospice team wants Dale and I to visit a couple of the local funeral homes we discussed with them today. They will join us if necessary.
To say this is one of the hardest things we've ever had to do is an understatement. Just the thought of having to sit down for this meeting has been eating at me for the last two weeks. I was sure there would have been some relief when the meeting was done and we had answered questions, put it out there. But no, I still feel stuck in a nightmare; a horrible nightmare. Then I see my girl and she is so full of life, I can't believe any of these discussions are for her. So, please forgive me if I burst into tears for no reason. Please forgive Dale for brooding. Please forgive Phin for running away and hiding. And please forgive Izzy for screaming and throwing a fit. None of this makes any sense to any of us and as Izzy appears to do worse, we all do worse.
All this being said, you would never guess Izzy is sick enough for us to be discussing funerals or adding more and more meds. She remains happy for the most part, even if she is not eating much. We've had a lot of fun this August. Phin turned 8, we went camping again with our extended family, and this past week we had a staycation, with lots of fun at a waterpark, beach, zoo, and at home. Here are some pics to show what we've been up to.
Izzy lost her 4 front teeth this summer!
Having fun at the art fair in Frankenmuth.
Packing herself in the cartop bag to ride home! (And no, we didn't let her stay.)
Beach!
Baking with Ma!
Next week, Izzy begins 1st Grade and Phin 3rd. Izzy is beyond excited. She can't wait. She keeps telling us how many days until Tuesday. Our hope is that she can continue going to school all day throughout the year. The team at school has already begun to put things in place to assist Izzy. And thankfully, she will have the same aide again this year.
Izzy's pain has not subsided, but is not as frequent. We did get her vomiting almost under control by giving her regular doses of zofran (anti-nausea med) every morning when she wakes. That has been helping in the car, even after school since it is long-acting. There is no answer on the tummy pains though. Izzy's GI doctor has no answers and her cardiologist blames GI. The pulmonologist couldn't believe Izzy was allowed to be in horrible pain for three months without help, so he pushed the issue with the cardiologist and GI doc. In the meantime, the hospice doctor decided we can help ease the pain while the others duke it out to find a cause. Granted, all of this rigamarole took about a week and a half, lots of phone calls by me, heartache, and Izzy saying she no longer wanted to be Izzy because of the pain.
But, as of Monday, we are to give Izzy half a dose of morphine when the pain comes. Surprisingly, Izzy went until this morning before she had the pain again. It was miserable for us watching her in pain, but must have been so much worse for her. Thankfully, about twenty minutes after getting the morphine, Izzy was Izzy again. She did a complete 180. Of course, one time does not prove anything, but I have hope that this will help. Even better, it didn't seem to make Izzy sleepy! And all of the concerns and worries I had about using morphine at home slipped away when I saw Izzy go from a heap, moaning in pain, to jumping around and smiling. We will, of course, continue to follow up with the doctors, but at least we can ease Izzy's pain while they figure out who is going to try to do something to ascertain the cause of the pain.
In line with Izzy's seeming decline, we've been pushed into making more painfully hard decisions. This morning, the hospice social worker and hospice spiritual adviser met with Dale and I for an extended meeting to discuss funeral planning. The kids do not know why the hospice team was here, other than making sure mommy and daddy's worries are addressed just like Phin and Izzy's worries are addressed. Because the kids do not know, we ask that you not discuss this with them. I am quite certain that Izzy's cardiologist would be adamant that we not start funeral planning now, but she hasn't been living with what we have for the last several months. The reason for planning now is to free us later when there will be no choice and all we want is to be with Izzy and Phin. With luck, we will not need to put these plans into effect for a very long time, but heart disease does not necessarily follow a playbook and it is better to be prepared, than to be forced into tough decisions at the worst time in our lives. So, the hospice team wants Dale and I to visit a couple of the local funeral homes we discussed with them today. They will join us if necessary.
To say this is one of the hardest things we've ever had to do is an understatement. Just the thought of having to sit down for this meeting has been eating at me for the last two weeks. I was sure there would have been some relief when the meeting was done and we had answered questions, put it out there. But no, I still feel stuck in a nightmare; a horrible nightmare. Then I see my girl and she is so full of life, I can't believe any of these discussions are for her. So, please forgive me if I burst into tears for no reason. Please forgive Dale for brooding. Please forgive Phin for running away and hiding. And please forgive Izzy for screaming and throwing a fit. None of this makes any sense to any of us and as Izzy appears to do worse, we all do worse.
All this being said, you would never guess Izzy is sick enough for us to be discussing funerals or adding more and more meds. She remains happy for the most part, even if she is not eating much. We've had a lot of fun this August. Phin turned 8, we went camping again with our extended family, and this past week we had a staycation, with lots of fun at a waterpark, beach, zoo, and at home. Here are some pics to show what we've been up to.
Izzy lost her 4 front teeth this summer!
Having fun at the art fair in Frankenmuth.
Packing herself in the cartop bag to ride home! (And no, we didn't let her stay.)
Beach!
Baking with Ma!
Next week, Izzy begins 1st Grade and Phin 3rd. Izzy is beyond excited. She can't wait. She keeps telling us how many days until Tuesday. Our hope is that she can continue going to school all day throughout the year. The team at school has already begun to put things in place to assist Izzy. And thankfully, she will have the same aide again this year.
Thank you for checking in on our girl and always thinking of us.
Mel
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by Holly Smith
by June Spriggs
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