Wednesday, December 25, 2013
Merry Christmas
Merry Christmas to you all! Fiona got plenty of chocolate in her stocking, and when she was done with it she took some from everyone else. She had 3 baths today because she was so sticky. Her favorite toy? Her brother's legos. She would sneak up and run away with a handful.
Monday, December 23, 2013
Limbo
Fiona's fundraiser
It's been a busy day. I talked to Cincinnati about Fiona's emergency room visit last week. They were a little surprised that we were sent home without any testing. I think they are as worried about her as I am. Our coordinator said that we must feel like we're in limbo. We do. It's hard to wait for a diagnosis.
Because of Fiona's paleness, greyness, and dark circles we are increasing her dose of Hizentra. This increase means that her pump can't handle the volume. I'm not sure what the nurse for our medical supplier will decide to do. They have a few options. There is a bigger pump, but it's not electronic. We could use two pumps simultaneously. The option I don't like is that we could do two infusions a week (I won't let this happen). There may be one other choice, but I can't remember it. It's been a long day.
Today is her second treatment without numbing cream. The doctor's are still exploring pain management options. All of the topical creams have lidocaine, which I think is the problem. She is in moderate pain during the infusions, and I'm not okay with that. Tylenol isn't enough. She kept saying, "ouch, hurts". I'm going to ask if ibuprofen is okay.
I've been thinking about trying a gluten free diet and some foods to try to heal Fiona's gut. Cincinnati said no. They need to scope her before we implement any dietary changes. Any dietary changes that could heal the gut would change the results of a scope.
The test that was sent out to Duke is back. The results are normal. This is the test that can show what's wrong when the doctors are stumped. This isn't the last line of testing, but it is disheartening to loose that little bit of hope. These are the days that a bone marrow transplant seems like a great idea.
It's been a busy day. I talked to Cincinnati about Fiona's emergency room visit last week. They were a little surprised that we were sent home without any testing. I think they are as worried about her as I am. Our coordinator said that we must feel like we're in limbo. We do. It's hard to wait for a diagnosis.
Because of Fiona's paleness, greyness, and dark circles we are increasing her dose of Hizentra. This increase means that her pump can't handle the volume. I'm not sure what the nurse for our medical supplier will decide to do. They have a few options. There is a bigger pump, but it's not electronic. We could use two pumps simultaneously. The option I don't like is that we could do two infusions a week (I won't let this happen). There may be one other choice, but I can't remember it. It's been a long day.
Today is her second treatment without numbing cream. The doctor's are still exploring pain management options. All of the topical creams have lidocaine, which I think is the problem. She is in moderate pain during the infusions, and I'm not okay with that. Tylenol isn't enough. She kept saying, "ouch, hurts". I'm going to ask if ibuprofen is okay.
I've been thinking about trying a gluten free diet and some foods to try to heal Fiona's gut. Cincinnati said no. They need to scope her before we implement any dietary changes. Any dietary changes that could heal the gut would change the results of a scope.
The test that was sent out to Duke is back. The results are normal. This is the test that can show what's wrong when the doctors are stumped. This isn't the last line of testing, but it is disheartening to loose that little bit of hope. These are the days that a bone marrow transplant seems like a great idea.
Friday, December 20, 2013
Emergency room visit, almost too lame to write about
So this morning Fiona was looking pretty bad. Grey, pale, dark circles under her eyes, again, but worse. I called Cincinnati, and after consulting with the doctor I was told to take her to the emergency room. I called and left a message with our local doctor and took her over. We spent about an hour and a half there. The ER doctor looked in her mouth, checked her cbc results from Wednesday and said we could go. I feel like there's something they're missing. I'm glad to be home and have her out of the germy hospital.
Fiona's fundraiser
Fiona's fundraiser
What we've ruled out
So far I think we've ruled out bare lymphocyte syndrome and DiGeorge syndrome. We have a hospital account that shows test results as they come back. Our account doesn't show the outside test results though. a new outside test came back, but I'm not sure what it is yet.
Fiona is looking grey and pale still with dark circles under her eyes. She doesn't look healthy or pink. More than anything else, that has me worried. She isn't sleepy like last week though, so hopefully we can spend the weekend at home. I'm going to stock up on some juice to make sure we keep her well hydrated.
On Wednesday the doctor reminded us that t-cells can be suppressed by viruses. T-cell suppression can lower t-cell response and function. Her lower numbers may just be a virus, so they are checking for strange viruses. We know that she doesn't have anything normal, they checked all of those first.
They are running a more in depth test of her t-cell receptors. So far the normal t-cell receptor test came back normal. T-cell receptors are part of the t-cell that tells the cell what to do in response to other cells. Her t-cell receptors shouldn't be normal. Again, weird.
Fiona's fundraiser
Fiona is looking grey and pale still with dark circles under her eyes. She doesn't look healthy or pink. More than anything else, that has me worried. She isn't sleepy like last week though, so hopefully we can spend the weekend at home. I'm going to stock up on some juice to make sure we keep her well hydrated.
On Wednesday the doctor reminded us that t-cells can be suppressed by viruses. T-cell suppression can lower t-cell response and function. Her lower numbers may just be a virus, so they are checking for strange viruses. We know that she doesn't have anything normal, they checked all of those first.
They are running a more in depth test of her t-cell receptors. So far the normal t-cell receptor test came back normal. T-cell receptors are part of the t-cell that tells the cell what to do in response to other cells. Her t-cell receptors shouldn't be normal. Again, weird.
Fiona's fundraiser
Thursday, December 19, 2013
confusion, tests, and mysteries
Today I feel like I've been in an airport waiting for a flight, only to have the flight delayed again and again (the flight is her diagnosis and treatment). Fiona is a mystery. There are many things that she could be diagnosed with, but there is also something that doesn't fit. When we get test results back they are sometimes confusing, most of the time we think we understand what they are testing, but we don't.
What we know is that her t-cells are low, her b cells are low, she is loosing protein somewhere during digestion, her t-cell function isn't good, and she isn't sick. We always come back to why isn't she sick? When they say she should be sick, they mean hospitalized, on her deathbed sick, not just a cold. In spite of replacing her IGG she still has an extremely compromised immune system.
They are sending off more genetic tests. One of them is only done by one person in the entire world, and it often gives an answer when no other answer can be found. Again, they drew as much blood as they could from Fiona.
Sometime in January, possibly the 8th they will scope her stomach and do a colonoscopy. The gastroenterologist wants to rule out celiac disease. Looking from the top and from the bottom of her GI tract leaves about 10 feet in the middle that they won't see. They may have her swallow a capsule camera to look at the rest.
We've been told to keep her away from crowds, and to mask her when she leaves the house. Have you ever tried to get a 2 year old to wear a mask? It's not her favorite thing. I think that in time she will get used to it.
One of the things we learned yesterday is that a specific t-cell function test called pha is the best indicator of how well her t-cells are working. In August her number was 203,250. Last month it dropped to 17,563. Normal range is above 135,190.
There is more to write, but naptime is almost over. More tomorrow!
Fiona's fundraiser
What we know is that her t-cells are low, her b cells are low, she is loosing protein somewhere during digestion, her t-cell function isn't good, and she isn't sick. We always come back to why isn't she sick? When they say she should be sick, they mean hospitalized, on her deathbed sick, not just a cold. In spite of replacing her IGG she still has an extremely compromised immune system.
They are sending off more genetic tests. One of them is only done by one person in the entire world, and it often gives an answer when no other answer can be found. Again, they drew as much blood as they could from Fiona.
Sometime in January, possibly the 8th they will scope her stomach and do a colonoscopy. The gastroenterologist wants to rule out celiac disease. Looking from the top and from the bottom of her GI tract leaves about 10 feet in the middle that they won't see. They may have her swallow a capsule camera to look at the rest.
We've been told to keep her away from crowds, and to mask her when she leaves the house. Have you ever tried to get a 2 year old to wear a mask? It's not her favorite thing. I think that in time she will get used to it.
One of the things we learned yesterday is that a specific t-cell function test called pha is the best indicator of how well her t-cells are working. In August her number was 203,250. Last month it dropped to 17,563. Normal range is above 135,190.
There is more to write, but naptime is almost over. More tomorrow!
Fiona's fundraiser
Tuesday, December 17, 2013
treatment pain
Yesterday I had to do Fiona's treatment without numbing cream. She's developed an unusual reaction to the numbing cream. It's supposed to make your skin turn white, which it did for the first 20 or so times that we used it, but now it leaves a raised, bumpy, red rash for about two weeks.
She says that you should all feel free to send sympathy gifts, mainly chocolate. :) It was horrible. She screamed for the first 10 minutes. Tomorrow we are going to Cincinnati and will be asking the doctor if there are any other options for pain control, someone mentioned numbing spray, but she may be too young to use it.
From what I can guess her treatment is roughly the equivalent of sticking three tacks into your skin and injecting about a teaspoon and a quarter of liquid under your skin. Most subcutaneous injections are less than half a teaspoon. Ouch!
Fiona's fundraiser
She says that you should all feel free to send sympathy gifts, mainly chocolate. :) It was horrible. She screamed for the first 10 minutes. Tomorrow we are going to Cincinnati and will be asking the doctor if there are any other options for pain control, someone mentioned numbing spray, but she may be too young to use it.
From what I can guess her treatment is roughly the equivalent of sticking three tacks into your skin and injecting about a teaspoon and a quarter of liquid under your skin. Most subcutaneous injections are less than half a teaspoon. Ouch!
Fiona's fundraiser
Sunday, December 15, 2013
We're home!
It's so nice to be home. They didn't find any reason for Fiona's lethargy or her grey skin. The last doctor we saw wanted to take Fiona home with him, and our nurse told us that she loved us and wished that all of her patients were like Fiona. Santa and Mrs. Claus came to visit courtesy of Frontier airlines and he brought her a book and a stuffed animal. Thank you Santa! Fiona was watching for people to pass our room when he showed up. He made her day.
As soon as I got into the house with our bags Katherine walked out the door to find a lovely Christmas bag filled with fun surprises. Katherine is calling it the super secret ninja Santa bag. We're not sure how you timed that so perfectly, but thank you!
Fiona is feeling and looking much better. We appreciate all of the prayers and thoughts in her behalf. We feel incredibly blessed to have such amazing friends and family. Thank you all!
Fiona's fundraiser
As soon as I got into the house with our bags Katherine walked out the door to find a lovely Christmas bag filled with fun surprises. Katherine is calling it the super secret ninja Santa bag. We're not sure how you timed that so perfectly, but thank you!
Fiona is feeling and looking much better. We appreciate all of the prayers and thoughts in her behalf. We feel incredibly blessed to have such amazing friends and family. Thank you all!
Fiona's fundraiser
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