Quick update to let you all know that we. are. HOME!
HOME.
Oh my gosh, I love that sound.
Home.
<3
:)
Friday, February 27, 2015
Friday
This morning Maisie's nurses were barely containing their excited squealing.
The great thing about having her vent downstairs is that her circuit (the tubing from the trach to the vent and back to the trach) can reach from the stationary vent almost anywhere in the kitchen, bathroom, and living room. This means that her stroller can remain pre-loaded with the portable vent and humidifier, the secondary apnea/heart rate/pulse ox monitors, and some emergency supplies and I don't have to pack up every time we want to go outside.
Most of her feeding equipment is in the kitchen. She will get her feeds while Jeff and I eat our meals, so that hopefully she makes the association between eating and the pump and the time and feeling full. Her physical therapy equipment is all in the living room, mostly put away and organized in the cabinets and shelves along the wall. Her stander and gait trainer are tucked behind the couch.
Maisie is coming home with a lot of support equipment, and there's a lot that I need to do. She is by no means "healthy." Aside from her regular g-tube feedings and physical therapy that were happening before the hospitalization, Maisie now has a huge list of daily/weekly/monthly needs.
Every day I will have to clean the trach site, and once a week the tube will have to be changed. The trach needs to be suctioned to get the mucous out (you and I would just cough secretions out, but this doesn't work with a trach.) She will receive daily HGH injections. Once every three weeks we will return to NJ Children's Hospital where Maisie will be weighed and measured precisely, and she will recieve IVIg. Once a week we'll go back for plasmapheresis.
The physical therapist will be by three times a week, but Maisie and I will do our own physical therapy every day -- besides an hour of stander time, she will be in the gait trainer for at least fifteen minutes every day, and she will have lots of little therapy activities throughout her day.
We have a long list of goals for Maisie, things we want to see her accomplish by her sixth birthday. I will blog more about that later, but right now I have discharge things to do!!
We didn't know why every glance at Miss Maisie made them so happy.
They weren't allowed to tell us.
We figured it out at rounds when the ENT told us that Maisie will be discharged today.
I couldn't believe it.
The nurses were basically partying.
There were cupcakes.
I am not kidding. Apparently the nurses asked for a bit of advanced warning so they could bring cupcakes and have a little celebration.
Maisie's is the only bed that has remained occupied for the past two and a half months. Every other patient has come and gone, but Maisie has been here.
I mean, this has been a long stay. And now -- well, the day after tomorrow -- it's over. We're going home. I have been living at the hospital as sure as Maisie has been. I have been out and home a few times, but for the most part I have needed to be here. She's been in pain, afraid, in surgery, or in some kind of arrest or distress for nearly our whole stay. And when she wasn't sick, I was training to give Maisie injections, to suction, change, and monitor her trach, and to use all the new equipment that is in our home, waiting for Maisie.
Over the past few days Jeff and I were able to get the house ready for Maisie. She has been in the first floor bedroom and even though it's really a very small room, we decided that she should stay there. The stationary vent will sit by the bed along with the feeding pole. and above it is a little shelf for the apnea, pulse-ox, and heart rate monitors. She has a nice new storage hutch with lots of shelves and cabinets that we have moved all of her new medical stuff into. The emergency oxygen tank and cannula are tucked into her closet, and on the flat top of the hutch we set up a trach-care station with a place for her to sit/lie while her trach is taken care of. The only open floor space is the three-foot wide path down the middle of the room, but that's okay because her playing can be done in the living room.
The great thing about having her vent downstairs is that her circuit (the tubing from the trach to the vent and back to the trach) can reach from the stationary vent almost anywhere in the kitchen, bathroom, and living room. This means that her stroller can remain pre-loaded with the portable vent and humidifier, the secondary apnea/heart rate/pulse ox monitors, and some emergency supplies and I don't have to pack up every time we want to go outside.
Most of her feeding equipment is in the kitchen. She will get her feeds while Jeff and I eat our meals, so that hopefully she makes the association between eating and the pump and the time and feeling full. Her physical therapy equipment is all in the living room, mostly put away and organized in the cabinets and shelves along the wall. Her stander and gait trainer are tucked behind the couch.
Maisie is coming home with a lot of support equipment, and there's a lot that I need to do. She is by no means "healthy." Aside from her regular g-tube feedings and physical therapy that were happening before the hospitalization, Maisie now has a huge list of daily/weekly/monthly needs.
Every day I will have to clean the trach site, and once a week the tube will have to be changed. The trach needs to be suctioned to get the mucous out (you and I would just cough secretions out, but this doesn't work with a trach.) She will receive daily HGH injections. Once every three weeks we will return to NJ Children's Hospital where Maisie will be weighed and measured precisely, and she will recieve IVIg. Once a week we'll go back for plasmapheresis.
The physical therapist will be by three times a week, but Maisie and I will do our own physical therapy every day -- besides an hour of stander time, she will be in the gait trainer for at least fifteen minutes every day, and she will have lots of little therapy activities throughout her day.
We have a long list of goals for Maisie, things we want to see her accomplish by her sixth birthday. I will blog more about that later, but right now I have discharge things to do!!
Sunday, February 22, 2015
In pictures
I follow a number of blogs written by mommies of medically complex children, like my Maisie the Great, and once in a while I see a photo and I just think 'yep, that's Maisie.'
So a few weeks back I came across these pictures on the blog Life with Lily, and my breath caught at the stunning similarities between Lily and Maisie.
So a few weeks back I came across these pictures on the blog Life with Lily, and my breath caught at the stunning similarities between Lily and Maisie.
Although today she was a bit more like this:
(the third picture is from ABC news. the last two are of Piper Breinholt, who has CCMS. I have always been amazed by the physical similarities between Piper and Maisie. Maisie is hardly any bigger than Piper, and between those skinny little legs and the trach now, they look a lot alike.)
When she woke up this morning she was so perky and happy, it was wonderful. She was sitting up and playing and babbling on and on. What a little fighter. She's even gained a little weight, so she's around 21 pounds. Yay! She is still getting daily growth hormone shots, which is one more thing Jeff or I will have to do at home. I'm not sure if she's grown height-wise at all, they only measure that once a month but she gets weighed once a week. I feel like I'm getting my sweet little girl back, and I can't wait.
Miranda's plane landed this morning and she arrived at my parents' place at 8:00 or so. She's been here, hanging out with Maisie, who is having a grand old time. Tomorrow I will leave Maisie in Miranda's capable hands and head back to NJ to get the house set up for Maisie's imminent arrival home.
Home. It sounds so wonderful. We're going home.
WE'RE GOING HOME!
AHHH
Provided that Jeff and I can everything organized by then, Maisie can probably be discharged Friday or Saturday, which is even sooner than originally planned.
God is good.
Saturday, February 21, 2015
Post Surgery & Such
Hello!
I am SO SORRY I didn't update through the surgery. I completely intended to and even had a post written but it got kind of crazy and I just forgot to post anything.
So here's the blow-by-blow:
7:30 -- Maisie FINALLY gets wheeled back. She is TERRIFIED. I don't think she's really been aware of having surgery before, so this was a "new" experience for her.
8:50ish -- A nurse came to the waiting room and asked that I scrub in and come into operating room. Um, WHAT?
9:00 -- I go back to find out that Maisie has fought the anesthesiologist so hard she wants me to help calm Maisie down.
9:30 -- Maisie is unconscious. I leave the operating room. Yes, it took half an hour.
10:00 -- Another nurse comes back and tells me the surgeon opened for the thymectomy. I probably won't hear anything until after noon.
12:30 -- The thymectomy is over and the surgeons are switching. A different surgeon performs each part of the operation (thymus, Broviac, port.)
1:00 -- This is where it got weird. Maisie had a dialysis catheter as an infant in the same place her Broviac was to be placed. The surgeon began the procedure and when he went to insert the actual catheter, found that he could not slide it as far through the vein as was necessary. After a fluoroscopy they found that the catheter was coiling inside her superior vena cava.
EXCUSE ME?
They assumed she had a blood clot in her SVC that was preventing the catheter from going through.
UM.
It was possible that the clot had formed during the thymectomy -- this seemed weird to me but I'm not the doctor. They immediately went into panic mode and sent for an emergency ultrasound and for a nurse to come tell me what was going on.
A little after 1 -- I get informed that Maisie probably has a blood clot in her heart.
1:30ish -- I get informed that she does NOT have a blood clot in her heart. Turns out the catheter tubing was faulty. Honestly I think the ER was bored was hoping for a cardiac arrest patient.
HOWEVER her pleura is torn and she has chylothorax. Which means she needs a second chest tube (I already knew she would probably have one to drain her thymus cavity.)
2:00 -- Broviac is in, all is well but for an elevated heart rate, time for the port.
2:30 -- Port is done, she's in recovery.
3:00 -- I can go see her.
4:00 -- She is vomiting. And vomiting. And vomiting. Pretty soon she's on IV fluids and anti-nausea meds. Her feed is stopped and her stomach is pumped through the g-tube so there isn't anything for her to throw up. But she is STILL TRYING TO VOMIT.
At this point I was exasperated. I nearly had a heart attack, she got TWO nasty chest tubes, and then she had a horrible reaction to the anesthesia, which is so not like her.
Anyway, all is well at this point. Both chest tubes were pulled this morning, they finally found an anti-nausea med that handled the vomiting, and she was mostly back to normal today.
The port and Broviac look great. No infections or anything. The process itself was crazy, but the end result looks good. She'll be having an ultrasound tomorrow to check everything out, make sure her lines are all placed correctly and the cavity where her thymus was is looking good.
In other news, Squishy is doing well. She is 26 weeks old, and apparently she is the size of a head of cauliflower. Um, okay. According to the doctor Squishy is pushing three pounds already. Which means I'm growing me a big baby! And no, we don't know for sure her gender. But I'm certain she's a girl.
This is considered a high-risk pregnancy because of my extensive medical history, but honestly everything looks great and I have no worries about my little Squishy.
I think that's all for today. We are still planning on going home on the 1st -- possibly sooner! Jeff has been fielding deliveries of oxygen tanks and ventilators and all kinds of stuff. This week I will probably be spending a lot of time at home getting everything ready. My sister Miranda is going to be here for the week and Maisie will love the attention. She won't miss me at all. Miranda dotes on her worse than my mother. Not that I'm complaining :)
I am SO SORRY I didn't update through the surgery. I completely intended to and even had a post written but it got kind of crazy and I just forgot to post anything.
So here's the blow-by-blow:
7:30 -- Maisie FINALLY gets wheeled back. She is TERRIFIED. I don't think she's really been aware of having surgery before, so this was a "new" experience for her.
8:50ish -- A nurse came to the waiting room and asked that I scrub in and come into operating room. Um, WHAT?
9:00 -- I go back to find out that Maisie has fought the anesthesiologist so hard she wants me to help calm Maisie down.
9:30 -- Maisie is unconscious. I leave the operating room. Yes, it took half an hour.
10:00 -- Another nurse comes back and tells me the surgeon opened for the thymectomy. I probably won't hear anything until after noon.
12:30 -- The thymectomy is over and the surgeons are switching. A different surgeon performs each part of the operation (thymus, Broviac, port.)
1:00 -- This is where it got weird. Maisie had a dialysis catheter as an infant in the same place her Broviac was to be placed. The surgeon began the procedure and when he went to insert the actual catheter, found that he could not slide it as far through the vein as was necessary. After a fluoroscopy they found that the catheter was coiling inside her superior vena cava.
EXCUSE ME?
They assumed she had a blood clot in her SVC that was preventing the catheter from going through.
UM.
It was possible that the clot had formed during the thymectomy -- this seemed weird to me but I'm not the doctor. They immediately went into panic mode and sent for an emergency ultrasound and for a nurse to come tell me what was going on.
A little after 1 -- I get informed that Maisie probably has a blood clot in her heart.
1:30ish -- I get informed that she does NOT have a blood clot in her heart. Turns out the catheter tubing was faulty. Honestly I think the ER was bored was hoping for a cardiac arrest patient.
HOWEVER her pleura is torn and she has chylothorax. Which means she needs a second chest tube (I already knew she would probably have one to drain her thymus cavity.)
2:00 -- Broviac is in, all is well but for an elevated heart rate, time for the port.
2:30 -- Port is done, she's in recovery.
3:00 -- I can go see her.
4:00 -- She is vomiting. And vomiting. And vomiting. Pretty soon she's on IV fluids and anti-nausea meds. Her feed is stopped and her stomach is pumped through the g-tube so there isn't anything for her to throw up. But she is STILL TRYING TO VOMIT.
At this point I was exasperated. I nearly had a heart attack, she got TWO nasty chest tubes, and then she had a horrible reaction to the anesthesia, which is so not like her.
Anyway, all is well at this point. Both chest tubes were pulled this morning, they finally found an anti-nausea med that handled the vomiting, and she was mostly back to normal today.
The port and Broviac look great. No infections or anything. The process itself was crazy, but the end result looks good. She'll be having an ultrasound tomorrow to check everything out, make sure her lines are all placed correctly and the cavity where her thymus was is looking good.
In other news, Squishy is doing well. She is 26 weeks old, and apparently she is the size of a head of cauliflower. Um, okay. According to the doctor Squishy is pushing three pounds already. Which means I'm growing me a big baby! And no, we don't know for sure her gender. But I'm certain she's a girl.
This is considered a high-risk pregnancy because of my extensive medical history, but honestly everything looks great and I have no worries about my little Squishy.
I think that's all for today. We are still planning on going home on the 1st -- possibly sooner! Jeff has been fielding deliveries of oxygen tanks and ventilators and all kinds of stuff. This week I will probably be spending a lot of time at home getting everything ready. My sister Miranda is going to be here for the week and Maisie will love the attention. She won't miss me at all. Miranda dotes on her worse than my mother. Not that I'm complaining :)
Wednesday, February 18, 2015
Up late, can't sleep, surgery tomorrow!
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*
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*
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)
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