I've started trying to post once a day, but I talked to Cincinnati after I posted. Another test came back normal. Fiona is having some sleeping trouble, sometimes too little, sometimes too much. She also has a low grade fever. They've checked for lots of viruses, but nothing has come back positive. In an effort to add an extra layer of protection she's starting amoxicillin for the winter. Hopefully it will prevent any bacterial infections. Now all we have to worry about are viruses. The IGG we give her comes from a huge donor pool and temporarily transfers their immunity to her, so it will help with viruses. The last part of her protection comes from an antibiotic they give to people with t-cell deficiencies called bactrim. Bactrim should protect her from opportunistic infections. So to recap, she takes IGG to replace what her b cells aren't making, bactrim to protect her because of her low t-cell counts, and amoxicillin to cover all of the bases.
Fiona's fundraiser
Tuesday, December 31, 2013
little bird
Christian and I were talking a few days ago about how fitting we think the bird in the cage at the top of Fiona's blog is. When my dear friend designed it for us I loved the bird, and as I've looked at it for a few months I've grown to love it more. There are a few reasons we feel it fits our situation so well. First, we think it represents Fiona and the layer of protection we try to wrap around her. Second, we feel caged by not finding the real problem. Having a better diagnosis would be so freeing. Third, Fiona is like a tiny trapped bird. She can't go out, she can't see other kids her age. She is so limited by her immune condition. She used to run for the door when it opened to try to get out, but now she's forgetting to try to escape. That makes me sad.
Yesterday our wall hand sanitizer dispenser came in the mail. I never thought I would love having hospital equipment stuck on the wall of my front hall. It doesn't look as bad as I thought it would. It is a novelty for the kids, especially James, who has the cleanest hands he's ever had! I'm starting to wonder how long each package of hand sanitizer will last?
Yesterday our wall hand sanitizer dispenser came in the mail. I never thought I would love having hospital equipment stuck on the wall of my front hall. It doesn't look as bad as I thought it would. It is a novelty for the kids, especially James, who has the cleanest hands he's ever had! I'm starting to wonder how long each package of hand sanitizer will last?
Monday, December 30, 2013
treatment changes
Fiona's fundraiser
Last week's treatment was pretty painful for Fiona. We looked into lots of skin numbing products and got permission from our doctor to try 20% benzocaine. I went to our local Walgreen's and asked our awesome pharmacist if she had any suggestions. She suggested trying teething ointment. Brilliant idea! It didn't work as well as lidocaine, but with Tylenol the sticks were much better. We're thirty minutes into the infusion, and she only complained when I stuck her.
Along with a new bigger pump we have new bigger syringes. I was very surprised by the difference in function. The smaller syringes were smoother to push (does that even make sense?). The bigger syringes are also more difficult to hold in my hand while sticking her and opening the bandages. The old syringes had blue caps on the ends, but the new ones have caps attached to the plunger, which have to be broken out of the plunger. I'm sure in time I'll get used to the changes.
Last week's treatment was pretty painful for Fiona. We looked into lots of skin numbing products and got permission from our doctor to try 20% benzocaine. I went to our local Walgreen's and asked our awesome pharmacist if she had any suggestions. She suggested trying teething ointment. Brilliant idea! It didn't work as well as lidocaine, but with Tylenol the sticks were much better. We're thirty minutes into the infusion, and she only complained when I stuck her.
Along with a new bigger pump we have new bigger syringes. I was very surprised by the difference in function. The smaller syringes were smoother to push (does that even make sense?). The bigger syringes are also more difficult to hold in my hand while sticking her and opening the bandages. The old syringes had blue caps on the ends, but the new ones have caps attached to the plunger, which have to be broken out of the plunger. I'm sure in time I'll get used to the changes.
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| You can see the new syringe at the bottom. It holds up to 50ml, or 10 teaspoons. |
Sunday, December 29, 2013
Fundraiser update
Thank you to all of the amazing people in our lives who have donated outside of the fundraiser. In the past few weeks we've been given more than $2,000. With every donation I can feel my stress level go down. Knowing that we will meet the out of pocket for our insurance in the next two weeks is a scary feeling. I'll be glad once we have though because it will be done for the year.
We've learned a lot about Fiona's medical expenses in the past week, and I'm sure we'll learn a lot more in the next two weeks. We have learned that most of her visits to Cincinnati Children's are about $9,000. We still don't know how much we will be charged by the medical supply company for Fiona's infusion medication.
Fiona's fundraiser
We've learned a lot about Fiona's medical expenses in the past week, and I'm sure we'll learn a lot more in the next two weeks. We have learned that most of her visits to Cincinnati Children's are about $9,000. We still don't know how much we will be charged by the medical supply company for Fiona's infusion medication.
Fiona's fundraiser
Saturday, December 28, 2013
reminder
Today I've been reminded that we are the lucky ones. Fiona is growing. Fiona isn't sick. No matter how scary or how difficult this is for us, we are blessed. Her infusions and antibiotics are protecting her. What we're doing now is keeping her safe until we can figure this out.
Fiona's fundraiser
Fiona's fundraiser
Friday, December 27, 2013
new pump!
Our medical supply company sent us a new electronic pump that will accommodate 50 mls. Her current dose is 5 gms in 25 mls. That means they can double the dose she's on before she'll need a new pump. The new pump also allows a longer infusion time, which may help her feel less pain as the medicine goes in. When we got the first pump I thought it would last us at least a year. It's been 2 months and they've almost doubled her original dose.
I've been going over our insurance statements. Because we paid our out of pocket so early we haven't seen any of the statements in a few months. Since Fiona was diagnosed in July they've paid out over $78,000 (that doesn't include her hizentra or infusion supplies). I'm pretty sure we will reach our deductible and out of pocket in January. I'm so thankful for insurance!
Fiona's fundraiser
I've been going over our insurance statements. Because we paid our out of pocket so early we haven't seen any of the statements in a few months. Since Fiona was diagnosed in July they've paid out over $78,000 (that doesn't include her hizentra or infusion supplies). I'm pretty sure we will reach our deductible and out of pocket in January. I'm so thankful for insurance!
Fiona's fundraiser
Thursday, December 26, 2013
What I want...
Another test came back from an outside lab. In the charting system I have access to I can't see outside lab results. Once again I am impatiently waiting. I'm sure that if it was something really important they would have called me by now. Being in diagnosis limbo really messes with your perspective. I want to know things, and I want to know them now. I used to be such a patient person, I think I need to work on that.
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
Saturday, December 14, 2013
Another 24
We're here for another 24 hours to let cultures grow. Our doctor wants to be cautious because of her immune deficiency. They are giving her IV antibiotics every 12 hour in addition to her normal oral antibiotic. The last doctor to visit us thought Fiona was the cutest patient he had ever seen.
hospital update
There really isn't a lot to update. So far all of her labs have come back normal, except the ones that aren't ever normal. We are still waiting for some labs and a respiratory panel. She's started coughing, but doesn't have any other symptoms.
Hospital stays are hard, doctors and nurses come in every few hours. There are lots of unfamiliar noises, and we are in an isolation room, which has constant airflow. There is also a double door entry so when anyone comes in or our we hear both doors.
Our TV is broken, so Fiona is extra restless. She gets short burts of energy then wears herself out and sleeps for hours. I'm convinced that a day in the hospital is like a week on the outside.
Fiona is drinking normally, but isn't eating much. She's about to crash, just in time for the doctor to come in. We've been up since 4 am.
Hospital stays are hard, doctors and nurses come in every few hours. There are lots of unfamiliar noises, and we are in an isolation room, which has constant airflow. There is also a double door entry so when anyone comes in or our we hear both doors.
Our TV is broken, so Fiona is extra restless. She gets short burts of energy then wears herself out and sleeps for hours. I'm convinced that a day in the hospital is like a week on the outside.
Fiona is drinking normally, but isn't eating much. She's about to crash, just in time for the doctor to come in. We've been up since 4 am.
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| Finding ways to play. |
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| She thought this was lots of fun! |
Friday, December 13, 2013
admitted
Fiona's fundraiser
We went to see the doctor and ended up being sent to the hospital. Our doctor was worried when she slept through an exam. Her energy level is way down and she's very pale. They said to be prepared for a blood transfusion.
We're in the emergency room waiting for a lumbar puncture before they send us to a room. I'm not sure how long they'll keep her. Her IV wasn't as difficult to start as it usually is. They are giving her some medicine to help with the lumbar puncture.
We went to see the doctor and ended up being sent to the hospital. Our doctor was worried when she slept through an exam. Her energy level is way down and she's very pale. They said to be prepared for a blood transfusion.
We're in the emergency room waiting for a lumbar puncture before they send us to a room. I'm not sure how long they'll keep her. Her IV wasn't as difficult to start as it usually is. They are giving her some medicine to help with the lumbar puncture.
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| She hates hospital wrist bands and spent the first five minutes trying to pick it off. She almost has it. It's just hanging on by a tiny section. |
Thursday, December 12, 2013
greyish
Fiona is pale, and kind of grey. She has dark circles under her eyes and her eyes are a little sunken. It may just be another of her mysterious things, like the low grade fever and stomach issues. We are taking her to the infectious disease specialist tomorrow to get checked and to get her blood counts checked. The nurse I talked to seemed pretty concerned. She told me that if anything changes to take her to the emergency room.
I ordered a box of pediatric masks today. We are going to try to start masking her when she leaves the house. I'm sure it will take some getting used to. Going to doctor's offices and the hospital are making me increasingly nervous. Eventually she will get sick, but I'm hoping a mask will give her a little extra protection.
Our amazing daughter Katherine is working to get Fiona's story on the news. She is very driven and determined to help her sister. She is always coming up with new ideas to reach more people.
Fiona's fundraiser
I ordered a box of pediatric masks today. We are going to try to start masking her when she leaves the house. I'm sure it will take some getting used to. Going to doctor's offices and the hospital are making me increasingly nervous. Eventually she will get sick, but I'm hoping a mask will give her a little extra protection.
Our amazing daughter Katherine is working to get Fiona's story on the news. She is very driven and determined to help her sister. She is always coming up with new ideas to reach more people.
Fiona's fundraiser
Saturday, December 7, 2013
blessings
When we met with the GI doctor we also met with a fellow. Cincinnati Children's is a teaching hospital, so we see residents and fellows often. It was interesting to hear her perspective on Fiona. She was amazed at how normal Fiona looks. She said that immune deficiency kids don't grow well, and they are always sick. For a few months I've felt like we are so blessed that Fiona hasn't been sick. As more numbers start to drop her health is nothing short of miraculous.
We are still waiting for the last labs and genetic tests to come back. I always feel so sure that her test results will find the thing that will confirm a diagnosis. Unfortunately, so far they haven't. This week the doctor's have ordered 3 sets of stool samples. TMI? Probably. They are trying to see if she is leaking protien and lymphocytes in her gut. They are also checking to see if she has any infections or parasites.
Fiona's fundraiser
We are still waiting for the last labs and genetic tests to come back. I always feel so sure that her test results will find the thing that will confirm a diagnosis. Unfortunately, so far they haven't. This week the doctor's have ordered 3 sets of stool samples. TMI? Probably. They are trying to see if she is leaking protien and lymphocytes in her gut. They are also checking to see if she has any infections or parasites.
Fiona's fundraiser
Wednesday, December 4, 2013
Nap time update
It's nap time so I can finally write an update. Fiona had a CT scan yesterday, and a consultation with a GI doctor. The CT didn't find much, some enlarged lymph nodes. I don't know what that means, or how serious it is, but our hematologist is out of the office until next week. I'm sure we'll hear from them soon if it's a problem.
Fiona charmed all of the doctors and nurses. They said she was the cutest patient of the day. Because of her sedation she wasn't supposed to walk for a few hours. Once we let her out of the stroller she climbed up to stand on a chair. One of the nurses tried to help her balance and she said, "HEY YOU!", which translates to "leave me alone, don't touch me!".
The GI is planning on doing an upper GI scope, a colonoscopy, and a camera capsule. He mentioned that while she was under hematology should do a bone marrow biopsy. We're waiting to see if hematology agrees. We think she will also have a scope of her lungs.
Now we wait. I hate waiting.
Fiona charmed all of the doctors and nurses. They said she was the cutest patient of the day. Because of her sedation she wasn't supposed to walk for a few hours. Once we let her out of the stroller she climbed up to stand on a chair. One of the nurses tried to help her balance and she said, "HEY YOU!", which translates to "leave me alone, don't touch me!".
The GI is planning on doing an upper GI scope, a colonoscopy, and a camera capsule. He mentioned that while she was under hematology should do a bone marrow biopsy. We're waiting to see if hematology agrees. We think she will also have a scope of her lungs.
Now we wait. I hate waiting.
Monday, December 2, 2013
bad news
Today we saw our home doctor. Fiona's t-cell function fell. Fell doesn't really do it justice though. It's more like it jumped off a cliff. Her numbers are scary low. She's being quarantined to home. She can't leave the house except for doctor's appointments. She isn't allowed to go outside. We can't have live plants in the house. She'll probably start a diet that will limit bacteria on her food.
The doctor here thinks our next appointment with Cincinnati will be scheduling the bone marrow transplant. He said her t-cells and b cells are failing. I'm trying to be calm. It's not working out for me.
The doctor here thinks our next appointment with Cincinnati will be scheduling the bone marrow transplant. He said her t-cells and b cells are failing. I'm trying to be calm. It's not working out for me.
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