The title says it all, ugh.
Forgive the nonsensical nature of this post. I'm tired.
Maisie's surgery is scheduled to start bright and early at 7:00 tomorrow morning. She will be in surgery until about 1:00 in the afternoon.
The thymectomy will happen first (to be clear, she is having her THYMUS taken out. I guess autocorrect changed it to thyroid in a bunch of my other posts. Either than or I typed wrong :) She'll be have a transcervical thymectomy, which means they'll be taking her thymus out through an incision in her neck instead of opening her chest the same way they would for open-heart surgery.
Then the Broviac line will be place and the port implanted. Hopefully, if all goes well with the surgery and we get all our supplies and equipment set up at home, we'll be going home on March 1st!
Hopefully our supplier will come through for us by Monday and I will be able to make a trip home to get her equipment set up. We will have to rearrange our house a bit to accommodate everything, but it's all so worth it.
It's hard to believe that after being in the hospital for two months, we are finally going home.
I have been flopping around tonight, trying so hard to fall asleep so I will be alert and awake when
they take Maisie back to put her under anesthesia.
Facing surgery for your child is terrifying, even when it is one that should dramatically increase their quality of life.
There is just so much that could go wrong.
She is doing so well finally, with speech, physical, and occupational therapy. She is already fighting to breath over the ventilator, and she shocked everyone when she was jabbering away just HOURS after trach surgery.
My beautiful girl is smiling, giggling, chattering, and even walking (okay, in a walker) again. I feel like I have my Maisie the Great back, and there is a part of me that is terrified something will go terribly wrong with this surgery and I'll lose my sweet girl again.
Please pray for us that the surgery goes beautifully and the supplier gets us everything we need in time for our home date!
Oh, also, tomorrow we break our record for the longest hospital stay! 68 days! *unenthused woo-hoo-ing*
Wednesday, February 18, 2015
Tuesday, February 17, 2015
Quick little update
I only have three seconds to post this because Maisie is being taken for an ultrasound, but I wanted to let you all know that Maisie will definitely be having her Broviac surgery at the same time she has her thymectomy.
We're not sure whether or not the port will be implanted at the same time. They have to find a different doctor to do the port because the doctor doing the Broviac has a busy schedule.
I have to run, I will update as soon as I know more!
We're not sure whether or not the port will be implanted at the same time. They have to find a different doctor to do the port because the doctor doing the Broviac has a busy schedule.
I have to run, I will update as soon as I know more!
Sunday, February 15, 2015
Medical Update: Day 64
There's good news on the Maisie front!
She is responding very well to a combination of low-dose prednisone and another drug called Acetylcholine. She is also doing plasmapheresis and IVIg (intravenous immunoglobulin.) This combination of medication and therapy seems to be working well. Unfortunately, she will have to have a Broviac line and an implanted port placed.
Once we leave the hospital, we will return for IVIg once every three weeks. This will go through the port. She will have plasmapheresis (a procedure similar to hemodialysis in which her blood plasma will have antibodies filtered out) once a week through the Broviac.
Right now she has a PICC line and a regular IV. Hopefully the surgery for the Broviac and the port will happen this week.
She will also FINALLY be having her thyroid gland taken out on Thursday. Whoopee!!
I know it seems odd to be so excited about your child having surgery, but this is something that I have been pushing for since July. Every other person with myasthenia has described dramatic improvements after their thymectomy. Obviously everyone is different and it might do nothing for Maisie, but it has always seemed crazy that we didn't try.
My hope is the thymectomy, the Broviac, and the port will all happen on Thursday. It will mean a four or five hour long procedure, but I want it all done at once.
The really great news is that -- drumroll, please -- it seems we might finally be going home soon!!
I completed all of my trach training. Check!
We've found a good combination of drugs for Maisie. Check!
Maisie is feeling and doing FANTASTIC. She has more energy than I've seen in a long time. Speech, physical, and occupational therapy are going extremely well. Check!
I am working with a social worker to get insurance and home nursing care sorted out. While Maisie has the trach she will have 24-hour nursing for the first week we're home, and then 8-hour night nursing as long as the trach is here.
The ENT gave us a tentative home date of March 1st. That gives us two weeks to get everything sorted out.
That means getting
1. Home nursing care
2. Insurance to get with the program
3. An arrangement with a supplier for all of Maisie's new vent and trach supplies, which include
- a stationary vent
- a portable vent
- a suction machine
- an apnea monitor
- a pulse-ox machine
- emergency oxygen tanks & nasal cannula
- all the bells and whistles that go along with the trach (trach ties, all the different parts of
the trach tubing itself, and a billion other little things.)
4. Permanent IVIg and plasmapheresis appointments
5. Broviac surgery
6. Thymectomy
7. Port implantation
There's SO MUCH to worry about and SO MUCH to organize, but honestly, it's all worth it to have Maisie home again.
I'm a little bit overwhelmed and a little bit SUPER EXCITED.
She is responding very well to a combination of low-dose prednisone and another drug called Acetylcholine. She is also doing plasmapheresis and IVIg (intravenous immunoglobulin.) This combination of medication and therapy seems to be working well. Unfortunately, she will have to have a Broviac line and an implanted port placed.
Once we leave the hospital, we will return for IVIg once every three weeks. This will go through the port. She will have plasmapheresis (a procedure similar to hemodialysis in which her blood plasma will have antibodies filtered out) once a week through the Broviac.
Right now she has a PICC line and a regular IV. Hopefully the surgery for the Broviac and the port will happen this week.
She will also FINALLY be having her thyroid gland taken out on Thursday. Whoopee!!
I know it seems odd to be so excited about your child having surgery, but this is something that I have been pushing for since July. Every other person with myasthenia has described dramatic improvements after their thymectomy. Obviously everyone is different and it might do nothing for Maisie, but it has always seemed crazy that we didn't try.
My hope is the thymectomy, the Broviac, and the port will all happen on Thursday. It will mean a four or five hour long procedure, but I want it all done at once.
The really great news is that -- drumroll, please -- it seems we might finally be going home soon!!
I completed all of my trach training. Check!
We've found a good combination of drugs for Maisie. Check!
Maisie is feeling and doing FANTASTIC. She has more energy than I've seen in a long time. Speech, physical, and occupational therapy are going extremely well. Check!
I am working with a social worker to get insurance and home nursing care sorted out. While Maisie has the trach she will have 24-hour nursing for the first week we're home, and then 8-hour night nursing as long as the trach is here.
The ENT gave us a tentative home date of March 1st. That gives us two weeks to get everything sorted out.
That means getting
1. Home nursing care
2. Insurance to get with the program
3. An arrangement with a supplier for all of Maisie's new vent and trach supplies, which include
- a stationary vent
- a portable vent
- a suction machine
- an apnea monitor
- a pulse-ox machine
- emergency oxygen tanks & nasal cannula
- all the bells and whistles that go along with the trach (trach ties, all the different parts of
the trach tubing itself, and a billion other little things.)
4. Permanent IVIg and plasmapheresis appointments
5. Broviac surgery
6. Thymectomy
7. Port implantation
There's SO MUCH to worry about and SO MUCH to organize, but honestly, it's all worth it to have Maisie home again.
I'm a little bit overwhelmed and a little bit SUPER EXCITED.
I have neglected someone very important!
Someone very special came to the hospital to visit Maisie today.
Even though she has remained a large part of Maisie's life, I have neglected to mention her in the blog.
I feel terrible about this, because she has played such a major role in Maisie's life. Without her, I have little doubt that Maisie would suffer from some of the same medical PTSD that so many kids who spend too much time in hospitals struggle with.
And especially because the work she's been doing is so incredibly selfless and, at eleven years old, this special kid is changing oncology and maybe even saving lives.
I owe her a lot. We owe her a lot.
And especially because the work she's been doing is so incredibly selfless and, at eleven years old, this special kid is changing oncology and maybe even saving lives.
I owe her a lot. We owe her a lot.
Can you guess who I'm talking about?
I'll give you a hint.
She lives in Baltimore, Maryland.
She's been fighting bone cancer for six years, but has been in remission for a year and a half.
Can you guess yet?
Okay, I'll just tell you!
It's Kaitlynn!
Wow! I can't believe we haven't seen her in so long!!
Maisie is PSYCHED!
These girls have known each other since Maisie was a year old and Kaitlynn was seven. Kaitlynn looks fabulous. She's put some meat on her bones and grown like three feet since I last saw her. She's all grown-up and gorgeous.
When Kate's mom called me over the weekend to ask if they could visit, I was worried that it might be hard for Maisie to see Kaitlynn so strong and healthy while she herself was so sick.
I needn't have worried. Once again, Maisie has proven that she is above such petty things as illness and outward appearance.
Kaitlynn has been doing exceptionally well. After her initial diagnosis with bone cancer in her left foot at five, she developed mets in her left leg and through her intestines. She's come through eight rounds of chemo, fourteen surgeries, and come dangerously close to having her foot amputated.
She's a miracle girl.
She's been in Tennessee working with St. Jude's Children's Research Hospital, where her body and her story are being used to study oncology and figure out what it is about this particular kid that beat cancer in a way that no one else ever has. I don't have any more details than that, unfortunately, but I know that Kaitlynn has sacrificed a lot to partake in the study, as have her parents.
I don't know how long she'll be around, her schedule is dictated pretty much completely by the hospital. She was given roughly two weeks off from "working," but she might be called back to Tennessee sooner or later. Right now what matters is that she is here, and Maisie has her best friend back.
(Speaking of Maisie, I will post a medical update soon.)
Kaitlynn has been doing exceptionally well. After her initial diagnosis with bone cancer in her left foot at five, she developed mets in her left leg and through her intestines. She's come through eight rounds of chemo, fourteen surgeries, and come dangerously close to having her foot amputated.
She's a miracle girl.
She's been in Tennessee working with St. Jude's Children's Research Hospital, where her body and her story are being used to study oncology and figure out what it is about this particular kid that beat cancer in a way that no one else ever has. I don't have any more details than that, unfortunately, but I know that Kaitlynn has sacrificed a lot to partake in the study, as have her parents.
I don't know how long she'll be around, her schedule is dictated pretty much completely by the hospital. She was given roughly two weeks off from "working," but she might be called back to Tennessee sooner or later. Right now what matters is that she is here, and Maisie has her best friend back.
(Speaking of Maisie, I will post a medical update soon.)
Tuesday, February 10, 2015
Failure to Thrive
Maisie has received this diagnosis on and off for years.
She was the size of a 6-8 month old from 10 months to over a year. Failure to thrive.
She had a sudden growth spurt and became a chubby, toddling two-year-old. Thriving.
At three and a half, she developed tetanus again and lost fifteen pounds. She only weighed about thirty-five. Failure to thrive.
By her fourth birthday, she had improved by leaps and bounds. She was eating and growing and learning how to walk and talk again. Thriving.
Once a month she gets weighed and measured. That day was yesterday.
At 30 inches tall and 21 pounds, she's the size of a two-year-old.
A little two year old.
There it was again: failure to thrive.
She's been switched from her blenderized tube feedings to a super-high-calorie prescription formula. It smells gross.
On Friday, she will start receiving growth hormone shots.
The doctors want to see kids her age grow three to four inches a year. In the past two years, she's grown like three inches.
It's time to take action.
She will be having weekly weigh-ins and measurements. The goal is 1/4 inch a month and at least two ounces per week.
She's never grown that much or gained that much weight in her whole life.
(obviously I'm exaggerating.)
But still.
She was the size of a 6-8 month old from 10 months to over a year. Failure to thrive.
She had a sudden growth spurt and became a chubby, toddling two-year-old. Thriving.
At three and a half, she developed tetanus again and lost fifteen pounds. She only weighed about thirty-five. Failure to thrive.
By her fourth birthday, she had improved by leaps and bounds. She was eating and growing and learning how to walk and talk again. Thriving.
Once a month she gets weighed and measured. That day was yesterday.
At 30 inches tall and 21 pounds, she's the size of a two-year-old.
A little two year old.
There it was again: failure to thrive.
She's been switched from her blenderized tube feedings to a super-high-calorie prescription formula. It smells gross.
On Friday, she will start receiving growth hormone shots.
The doctors want to see kids her age grow three to four inches a year. In the past two years, she's grown like three inches.
It's time to take action.
She will be having weekly weigh-ins and measurements. The goal is 1/4 inch a month and at least two ounces per week.
She's never grown that much or gained that much weight in her whole life.
(obviously I'm exaggerating.)
But still.
Sunday, February 8, 2015
Cocktail Party in Pediatrics: An Autobiography
I apologize for the lack of posts. I'm in vent training and have been spending most of my time either in conversation or meetings with doctors or learning how to care for a vent-dependent child.
I won't be allowed to take Maisie home until I pass a bunch of tests.
So I'm taking this pretty seriously.
Meanwhile, Miss Maisie the Great has been throwing a cocktail party in pediatrics. The doctors are trying to find the magic combination or "cocktail" of drugs that will give her or help her get the strength to breathe on her own.
That's what her autobiography should be called.
Cocktail Party in Pediatrics. An endless trial to find the right combination of meds.
I won't bore you with the details, at this they're switching up her meds, running trials, giving tests, poor thing's had more PFTs, chest x-rays, and neuro workups in the past two weeks than she'd ever had before.
In other news, she is doing FANTASTIC in speech therapy. We got her passy-muir speech valve in last week and she has been working so hard with it. She is now saying about a dozen words consistently and clearly.
1. Mama
2. No
3. Yes
4. Ow-wow
5. Ball
6. Pay (play)
7. Hi
8. Bye-bye
9. Dolly
10. Teddy
11. Don't
12. Want
13. Top (stop)
Okay, so thirteen. I might be missing a few. Since November I have carefully recorded every word that comes out of her mouth, and she maxed out at 62. We're a long way from there, but it's encouraging to see that all or nearly all of the words she is saying now are words she already knew, which tells us that she is not forgetting the words. She is just losing her ability to enunciate them.
You might also notice that like half of them are complain-y words. No, ow, don't, stop, etc. This all stems from her hatred of the ventilator and the trach. We are happy to let her complain, yell, kick, and scream as much as she wants. She's using her muscles and her vocal cords, and she is completely at liberty to hate the stupid trach. Hopefully the more she complains about it, the sooner it will be gone.
She also started physical therapy and has been doing laps of the hallway outside her room in a walker or a gait trainer. Jeff brought her stander here a while ago and she does her hour of stander time every day. We met with orthopedics a few days ago, and after an x-ray and an assessment the doctor declared that everything looks good. Her bones are structured well and in the right place. A calcium supplement has been added to her daily medications to ensure that her bones stay strong.
To the untrained eye, Maisie looks good. She definitely seems to be getting stronger. She is happier, peppier, and much more awake, lucid, and interactive.
We still don't have any estimate when we'll go home. The doctors want her under their supervision as much as possible until they find a good cocktail of medicines, so it seems we might be here for a while. Alternately, we might move into the nearby Ronald McDonald house and she will continue seeing the doctors as an outpatient. But first, I have to pass my trach care tests.
(today is day 57, btw)
I won't be allowed to take Maisie home until I pass a bunch of tests.
So I'm taking this pretty seriously.
Meanwhile, Miss Maisie the Great has been throwing a cocktail party in pediatrics. The doctors are trying to find the magic combination or "cocktail" of drugs that will give her or help her get the strength to breathe on her own.
That's what her autobiography should be called.
Cocktail Party in Pediatrics. An endless trial to find the right combination of meds.
I won't bore you with the details, at this they're switching up her meds, running trials, giving tests, poor thing's had more PFTs, chest x-rays, and neuro workups in the past two weeks than she'd ever had before.
In other news, she is doing FANTASTIC in speech therapy. We got her passy-muir speech valve in last week and she has been working so hard with it. She is now saying about a dozen words consistently and clearly.
1. Mama
2. No
3. Yes
4. Ow-wow
5. Ball
6. Pay (play)
7. Hi
8. Bye-bye
9. Dolly
10. Teddy
11. Don't
12. Want
13. Top (stop)
Okay, so thirteen. I might be missing a few. Since November I have carefully recorded every word that comes out of her mouth, and she maxed out at 62. We're a long way from there, but it's encouraging to see that all or nearly all of the words she is saying now are words she already knew, which tells us that she is not forgetting the words. She is just losing her ability to enunciate them.
You might also notice that like half of them are complain-y words. No, ow, don't, stop, etc. This all stems from her hatred of the ventilator and the trach. We are happy to let her complain, yell, kick, and scream as much as she wants. She's using her muscles and her vocal cords, and she is completely at liberty to hate the stupid trach. Hopefully the more she complains about it, the sooner it will be gone.
She also started physical therapy and has been doing laps of the hallway outside her room in a walker or a gait trainer. Jeff brought her stander here a while ago and she does her hour of stander time every day. We met with orthopedics a few days ago, and after an x-ray and an assessment the doctor declared that everything looks good. Her bones are structured well and in the right place. A calcium supplement has been added to her daily medications to ensure that her bones stay strong.
To the untrained eye, Maisie looks good. She definitely seems to be getting stronger. She is happier, peppier, and much more awake, lucid, and interactive.
We still don't have any estimate when we'll go home. The doctors want her under their supervision as much as possible until they find a good cocktail of medicines, so it seems we might be here for a while. Alternately, we might move into the nearby Ronald McDonald house and she will continue seeing the doctors as an outpatient. But first, I have to pass my trach care tests.
(today is day 57, btw)
Tuesday, January 27, 2015
Day 45
Dear Diary,
Today is my forty-fifth day on this strange planet. The natives call it "the Hospital."
The food here is not unlike that from my home, but it is strangely flavorless.
Despite having access to a variety of dishes, many of those who live here choose a diet made mostly of pudding, jello, orange juice, and ice chips.
Some of the natives do not eat at all but are fed homogenous liquids through holes in their stomachs or a needle in their arm.
I have observed that the people here seem to belong to several different tribes, identifiable by their distinctive clothing.
The men and women in ill-fitting, matched shirt-and-pants sets are in tribe called "Nurses."
Some people wear similar attire to the Nurses but with the addition of a sort of stiff, white coat. These are Doctors. Some Doctors wear suits or dress shirts and slacks under their coats.
There are a small number of adults with a constant look of worry on their face. They are typically in comfortable, soft clothing and do not bathe or change their attire as frequently as they probably should. They wash their hands far more than I would deem "normal." These are Parents.
Members of all three tribes work together to serve small beings of a different tribe: the Patients. They spend much of their time in bed, often wearing simple dresses.
I fear that I am succumbing to Stockholm Syndrome, dear Diary, for though I hate it here I will not leave until my captors, members of the Doctor tribe, tell me I can go. I am free to leave, Diary, and yet I will not. I am afraid even to leave this room long enough to shower or eat food. I am going crazy, Diary. Why am I doing this? Why am I behaving so strangely?
Oh, I know.
It's because I'm in love.
I'm in love with a little girl with gigantic eyes and a beautiful, rare smile.
My Maisie girl.
Today is my forty-fifth day on this strange planet. The natives call it "the Hospital."
The food here is not unlike that from my home, but it is strangely flavorless.
Despite having access to a variety of dishes, many of those who live here choose a diet made mostly of pudding, jello, orange juice, and ice chips.
Some of the natives do not eat at all but are fed homogenous liquids through holes in their stomachs or a needle in their arm.
I have observed that the people here seem to belong to several different tribes, identifiable by their distinctive clothing.
The men and women in ill-fitting, matched shirt-and-pants sets are in tribe called "Nurses."
Some people wear similar attire to the Nurses but with the addition of a sort of stiff, white coat. These are Doctors. Some Doctors wear suits or dress shirts and slacks under their coats.
There are a small number of adults with a constant look of worry on their face. They are typically in comfortable, soft clothing and do not bathe or change their attire as frequently as they probably should. They wash their hands far more than I would deem "normal." These are Parents.
Members of all three tribes work together to serve small beings of a different tribe: the Patients. They spend much of their time in bed, often wearing simple dresses.
I fear that I am succumbing to Stockholm Syndrome, dear Diary, for though I hate it here I will not leave until my captors, members of the Doctor tribe, tell me I can go. I am free to leave, Diary, and yet I will not. I am afraid even to leave this room long enough to shower or eat food. I am going crazy, Diary. Why am I doing this? Why am I behaving so strangely?
Oh, I know.
It's because I'm in love.
I'm in love with a little girl with gigantic eyes and a beautiful, rare smile.
My Maisie girl.
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