Yesterday I found out that Fiona could see gastroenterology (belly doctor) today, or we would have to wait until June to get in. I was worried that it would be a short appointment, but I was wrong. I really like the doctor we see. He is very thorough. His nurse is in the room taking notes and ordering tests while he tells us what he wants to do.
Today Fi got an xray, they ordered stool and urine tests, and they're scheduling an endoscopy and a colonoscopy. An endoscope is a camera they feed into her belly through her mouth to look at the stomach and large intestine. A colonoscopy is a camera they use to look at the small intestine. They will be looking for abnormalities, and lymph (fluid with white blood cells, protein, and albumin) leakage into her gut. Her xray results are back, and they look normal.
Fiona has been doing pretty well. Her stools are looser than normal this week. TMI? Probably. She also has some belly cramping. Usually that means she has a stomach virus. Her nasal discharge is thick and green. Usually that means she has a sinus infection, but allergy season is pretty bad this year, so it could be that. We'll see.
Here's what I'm thinking... Lymph is a fluid. It contains lymphocytes (t-cells, b cells, and natural killer (nk)) cells. Her b cell, and nk cell levels are normal. If she's leaking lymph, shouldn't all of her lymphocytes be low?
I bought her a bag of m&m's at the hospital gift shop. After she ate them I asked her what she wanted for lunch. "Candy!" was her reply. Then she fell asleep for most of the ride home.
Tuesday, April 28, 2015
Friday, April 10, 2015
new tests
Our trip to Cincinnati on Wednesday was an adventure! Just as we were leaving it started to rain, which quickly turned to hail, not the bouncy pea sized fluffy hail I grew up with. This hail was huge, quarter sized chunks of ice. We waited it out for about 40 minutes under the drive through at our favorite Walgreens. We had to go back home to drive some of the older kids to school because they couldn't get to the bus stop. Luckily even though we left 45 minutes late, and we had to drive through heavy rain, we were only 15 minutes late.
At the appointment our doctor talked about how Fiona doesn't present like a typical kid with an immune deficiency. She doesn't get that sick, she's growing well, and her body responds to infections. He thinks she may be losing t-cells in her digestive system, or in her lymphatic system. We're waiting for a call from gastroenterology to schedule a scope of her digestive system, and they want to check the vessels of her lymphatic system for leaks. They will inject dye into her lymphatic system and watch to see if it stays in the vessels. Some of you may remember that we've already tested for lymphocyte loss in her digestive system. The new testing will be more in depth.
The lymphatic system is made of organs, lymph nodes, and lymph ducts, with vessels that run between them like blood vessels, but instead of blood they carry lymph. Lymph is made of lymphocytes (white blood cells), and other fluids, including albumin. Since we've been testing, Fiona's albumin has been low. She's also had a slightly larger than normal belly since just after she was born. It may be that there is extra fluid accumulating in her abdomen. I'm hopeful that this might be the right diagnosis, but I'm trying not to be too invested, because every new test we try comes back normal.
We don't go back to immunology at Cincinnati Children's until July. For our next visit they're going to let us have her labs drawn here, which is good because the lab tech at our local doctor usually doesn't have to stick Fiona more than once. I like seeing her results before her visit, rather than waiting for them and calling the doctor after.
This week Fiona is creating artwork on our new carpet, ugh! Our steam cleaner has been able to remove everything so far, with the added benefit of extra clean carpet for Fiona to play on. I'm working on clearing out the kids outgrown clothes, and figuring out what they need for summer. It was 80 degrees here yesterday, so I better work fast.
Fiona's last antibiotic infusion was great! Only one poke, which surprised the nurses who remembered her from her previous visit. I have a new protocol for IV's and blood draws, we give her as many juice boxes as she'll drink, which add fluid and make her blood vessels bigger.
At the appointment our doctor talked about how Fiona doesn't present like a typical kid with an immune deficiency. She doesn't get that sick, she's growing well, and her body responds to infections. He thinks she may be losing t-cells in her digestive system, or in her lymphatic system. We're waiting for a call from gastroenterology to schedule a scope of her digestive system, and they want to check the vessels of her lymphatic system for leaks. They will inject dye into her lymphatic system and watch to see if it stays in the vessels. Some of you may remember that we've already tested for lymphocyte loss in her digestive system. The new testing will be more in depth.
The lymphatic system is made of organs, lymph nodes, and lymph ducts, with vessels that run between them like blood vessels, but instead of blood they carry lymph. Lymph is made of lymphocytes (white blood cells), and other fluids, including albumin. Since we've been testing, Fiona's albumin has been low. She's also had a slightly larger than normal belly since just after she was born. It may be that there is extra fluid accumulating in her abdomen. I'm hopeful that this might be the right diagnosis, but I'm trying not to be too invested, because every new test we try comes back normal.
We don't go back to immunology at Cincinnati Children's until July. For our next visit they're going to let us have her labs drawn here, which is good because the lab tech at our local doctor usually doesn't have to stick Fiona more than once. I like seeing her results before her visit, rather than waiting for them and calling the doctor after.
This week Fiona is creating artwork on our new carpet, ugh! Our steam cleaner has been able to remove everything so far, with the added benefit of extra clean carpet for Fiona to play on. I'm working on clearing out the kids outgrown clothes, and figuring out what they need for summer. It was 80 degrees here yesterday, so I better work fast.
Fiona's last antibiotic infusion was great! Only one poke, which surprised the nurses who remembered her from her previous visit. I have a new protocol for IV's and blood draws, we give her as many juice boxes as she'll drink, which add fluid and make her blood vessels bigger.
Tuesday, March 31, 2015
Immune Deficiency Foundation Conference
A few weeks ago I applied for a partial scholarship for the Immune Deficiency Foundation's National Conference in New Orleans. Today I found out that we were awarded the scholarship! It will cover the hotel stay. When I applied I didn't really think about it, I just wanted to make sure that if we wanted to go that we had applied. It would be an amazing opportunity to meet other families, meet doctors, and learn more about Fiona. I'm a little anxious about traveling, and about how to pay for the travel and registration. I'm really hoping we can make it happen. I think we could all use a break after our winter isolation.
In a little over a week we go to Cincinnati. I'm looking forward to hearing what Fiona's doctor is thinking about. Waiting has given me a little too much time to think about it. When Fiona was first diagnosed we went from thinking she just had a typical virus, then hypogammaglobulinemia, and then an unknown immune deficiency. Every step has been a little worse news. I hope that isn't the case this time.
Some of us have had a cold/allergy/sinus infection, but Fiona hasn't had more than a runny nose. I'm so thankful for her treatments. Her last two treatments went really well. She didn't cry when I stuck her, and she was so brave.
This week is spring break, and the weather is nice, so Christian and the kids went to the park last night. Fiona was really excited to swing. She stopped two boys at the park to tell them about her curls, which is what she calls her ponytails. She loves to talk about her hair, it's adorable. She's also a blossoming singer/songwriter. This week's theme is Old MacDonald. Yesterday she was singing "with a poop poop here, and a poop poop there", and today she sang about hating her older sister, because Katherine wouldn't let her take a bath. She's exploring art, and likes to talk about her masterpieces.
In a little over a week we go to Cincinnati. I'm looking forward to hearing what Fiona's doctor is thinking about. Waiting has given me a little too much time to think about it. When Fiona was first diagnosed we went from thinking she just had a typical virus, then hypogammaglobulinemia, and then an unknown immune deficiency. Every step has been a little worse news. I hope that isn't the case this time.
Some of us have had a cold/allergy/sinus infection, but Fiona hasn't had more than a runny nose. I'm so thankful for her treatments. Her last two treatments went really well. She didn't cry when I stuck her, and she was so brave.
This week is spring break, and the weather is nice, so Christian and the kids went to the park last night. Fiona was really excited to swing. She stopped two boys at the park to tell them about her curls, which is what she calls her ponytails. She loves to talk about her hair, it's adorable. She's also a blossoming singer/songwriter. This week's theme is Old MacDonald. Yesterday she was singing "with a poop poop here, and a poop poop there", and today she sang about hating her older sister, because Katherine wouldn't let her take a bath. She's exploring art, and likes to talk about her masterpieces.
Friday, March 20, 2015
labs
Fiona is sick again, fortunately it's so mild we haven't checked to see what it is. We drew her labs just before she had symptoms, so they show what her body does as soon as it encounters a virus. The good news is that her CD3 (regulator t-cells) and CD8 (killer t-cells) responded really well. Her CD4 (helper t-cells) went up slightly, but are still really low. The problem is that helper t-cells tell killer t-cells where to fight. I'm still waiting for more labs to come back.
Fiona has started announcing to anyone listening that she is sick. Sometimes her brain is hot, sometimes it's cold. She likes to have her temperature checked. She needs lots of bandaids for her bruises and scratches. Today she told me that she needs to play "in the warm sunshine" as she ran out the front door with no coat or shoes. It's 43 degrees and mostly cloudy, so she was disappointed.
Fiona has started announcing to anyone listening that she is sick. Sometimes her brain is hot, sometimes it's cold. She likes to have her temperature checked. She needs lots of bandaids for her bruises and scratches. Today she told me that she needs to play "in the warm sunshine" as she ran out the front door with no coat or shoes. It's 43 degrees and mostly cloudy, so she was disappointed.
Friday, March 13, 2015
Patience
Yesterday I found our that Fiona's doctor is thinking about a different diagnosis than we have discussed previously. I won't find out what it is until April 8th. That's a long time to wait. As a mom who likes to learn as much as she can, this is going to be an exercise in patience. They are sending me a kit for the lab to draw blood for us to send in to get tested. It takes two weeks for some of the test results to come back. We're also waiting for the results of her genetic tests to come back. I'm not good at waiting.
Thursday, March 12, 2015
update
Fiona had her pentamidine infusion last week. It was okay. She had to be stuck 5 times to get her IV started, and 4 of her sticks they used an ultrasound to see the vein. Having to be stuck that many times is pretty traumatic for her. This will be a monthly infusion.
I'm starting to think she may need a port. For anyone who doesn't know, a port is a small medical device that would be implanted under her skin. It connects to a vein with a catheter. Her veins have never been great, but we've avoided a port because she's only getting blood drawn. Getting a port would allow them easy access to a vein when they need it. The downside to a port is that it can get infected. With her immune system that would be bad. She's also growing, so her port would have to be replaced a few times as she grows.
Her last labs came back and they look okay. They aren't normal, but they're pretty normal for her. We're waiting to hear what our doctor in Cincinnati thinks about her numbers, and about a port.
She's still healthy, which is nice because she had a pretty long stretch of infections starting last spring. We're starting to think about taking her back to church in April. She escaped the house for a few minutes yesterday and loved it. She was climbing over a snowbank, throwing snow balls, and taking our neighbor's invisible dog fence lawn flags for a "road rally" (thanks to the Mickey's Road Rally cartoon). These are the days that the mommy guilt really kicks in. I'm always trying to weigh the risks. I hate that she doesn't get to have normal kid experiences.
Lately I've been reading about Idiopathic CD4 Lymphocytopenia (ICL). That's just a long way of saying that they don't know why she doesn't have enough CD4 t-cells. CD4 cells are also called helper t-cells, and they are the t-cells that most people know about because of HIV and AIDS. Fiona has a significant helper t-cell deficiency, but she doesn't have HIV or AIDS. Her immune deficiency is called a primary immune deficiency because it's genetic, not acquired, like HIV or AIDS. Because her other t-cell lines are low, I'm not sure that ICL fits her well.
I'm starting to think she may need a port. For anyone who doesn't know, a port is a small medical device that would be implanted under her skin. It connects to a vein with a catheter. Her veins have never been great, but we've avoided a port because she's only getting blood drawn. Getting a port would allow them easy access to a vein when they need it. The downside to a port is that it can get infected. With her immune system that would be bad. She's also growing, so her port would have to be replaced a few times as she grows.
Her last labs came back and they look okay. They aren't normal, but they're pretty normal for her. We're waiting to hear what our doctor in Cincinnati thinks about her numbers, and about a port.
She's still healthy, which is nice because she had a pretty long stretch of infections starting last spring. We're starting to think about taking her back to church in April. She escaped the house for a few minutes yesterday and loved it. She was climbing over a snowbank, throwing snow balls, and taking our neighbor's invisible dog fence lawn flags for a "road rally" (thanks to the Mickey's Road Rally cartoon). These are the days that the mommy guilt really kicks in. I'm always trying to weigh the risks. I hate that she doesn't get to have normal kid experiences.
Lately I've been reading about Idiopathic CD4 Lymphocytopenia (ICL). That's just a long way of saying that they don't know why she doesn't have enough CD4 t-cells. CD4 cells are also called helper t-cells, and they are the t-cells that most people know about because of HIV and AIDS. Fiona has a significant helper t-cell deficiency, but she doesn't have HIV or AIDS. Her immune deficiency is called a primary immune deficiency because it's genetic, not acquired, like HIV or AIDS. Because her other t-cell lines are low, I'm not sure that ICL fits her well.
Monday, February 23, 2015
pentamidine
Fiona is scheduled to get her first dose of pentamidine on March 1st. I'm a little worried, but feel better that it's scheduled. I talked to our care coordinator this morning and have a better understanding of the process. It will take about 2 hours to give her the IV. The biggest risk is increased heart rate. If her heart rate increases they would stop the IV and restart it at a slower rate. They will also premedicate her. I'm not sure what the premeds are yet.
I should have Fiona's latest labs today or tomorrow. I'm really curious to see what her lymphocyte levels are now that she hasn't had a virus in over a month. Hopefully they're higher. We go back to Cincinnati on April 1st.
We hit our $8,000 out of pocket this month. I think we will be able to use $3,499 of the copay assistance Hizentra offers. Now we wait to get the medical bills. If the website is right we will need to pay just over $4,000 in medical bills. Thanks to generous donations we were able to pay off last year's bills, and have a start on this year. Fiona's medical fund has helped so much!
I should have Fiona's latest labs today or tomorrow. I'm really curious to see what her lymphocyte levels are now that she hasn't had a virus in over a month. Hopefully they're higher. We go back to Cincinnati on April 1st.
We hit our $8,000 out of pocket this month. I think we will be able to use $3,499 of the copay assistance Hizentra offers. Now we wait to get the medical bills. If the website is right we will need to pay just over $4,000 in medical bills. Thanks to generous donations we were able to pay off last year's bills, and have a start on this year. Fiona's medical fund has helped so much!
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