To recap, I took Emily to the ER on Friday night. They ran cultures, sent us home early Saturday morning, then called us back Saturday afternoon.
Well, this sure wasn't what we were expecting. We were transferred to the hospital that placed the port, where our Rheumy is. We had several appointments on the agenda for today, but they all went out the window. My son was to have a new patient appointment with our Rheumy, Emily was supposed to have her IV meds and an appointment with a gastro doctor. Instead they transported her via ambulance while I took our van so that I would have a way back home. We got here very early in the morning. We saw an attending doc last night who is trying to coordinate everything. Today her Rheumy came to update us. They started her on IViG to help boost her immune system. They are doing their own cultures here and debating what to do with her port. The surgeon & the gastro doc are supposed to come see her. The surgeon and infectious disease departments will confer next. They say that her type of staph is generally very responsive to antibiotics, so they may just continue the strong antibiotics and leave the port alone. Either way there is a risk. I would prefer not having to put her through two more surgeries.
And so we wait. Wait to find out the plan, wait on her immune suppressing meds that keep her pain, stiffness, and joint destruction under control. Wait to go home and back to my wonderful hubby and children. On the bright side she's actually pretty happy. She's been in a great mood, silly and all.
We would appreciate all of the prayers that we can get. She's acting so great that it's easy to forget how sick she really is.
Edited to update that the nurse just informed me that there is blood in her stool. I had told the docs that a couple of months ago, but we thought increasing her stomach med would help. Guess not. Hopefully GI will come tomorrow.
Wednesday, October 26, 2011
Monday, October 24, 2011
Hospital Update
While I still don't have a lot of details, this is what I know so far. They were planning on keeping her for several more days until I explained the situation. Now that they all know and understand why we are headed to Shands on Wednesday, they are shooting to release her tomorrow. She will be sent home with an IV and antibiotics. They will train me how to work the IV! That's all that I know so far. I still need to find out exactly what type of bacteria this was. I know that they finally pinpointed that. They changed her antibiotic to Oxacillin because this strain is weak to it. That's about the extent of my knowledge right now.
Emily's hanging in, but she was really, really hoping to go home today. She's a bit sad that we're still here. We took a quick trip to the gift shop, but she was tired shortly after we got there. Our big activity- filled morning went south pretty quickly. That's ok. I'd rather she focus on rest, anyway. We found out that we can do laundry here at the Ronald McDonald house, and use their computers! (Thank you!) We can also visit the hospital library, but the latest they are open is 6:30. RMDH is only available here until 4 unless you have a room downstairs with them. I'm so happy they are here! I'll have to buy them a new keyboard for this computer. The space bar only works when it wants to!
So with luck we'll be home tomorrow, pack a bag and head off to Shands. UGH!!! Who'd have thought???
Emily's hanging in, but she was really, really hoping to go home today. She's a bit sad that we're still here. We took a quick trip to the gift shop, but she was tired shortly after we got there. Our big activity- filled morning went south pretty quickly. That's ok. I'd rather she focus on rest, anyway. We found out that we can do laundry here at the Ronald McDonald house, and use their computers! (Thank you!) We can also visit the hospital library, but the latest they are open is 6:30. RMDH is only available here until 4 unless you have a room downstairs with them. I'm so happy they are here! I'll have to buy them a new keyboard for this computer. The space bar only works when it wants to!
So with luck we'll be home tomorrow, pack a bag and head off to Shands. UGH!!! Who'd have thought???
Sunday, October 23, 2011
October is hospital month for us...
While the little miss is busy painting, I have taken over her internet!
So, she still doesn't really have a good grasp on when it's important to speak up when it comes to her body. She's gotten much, much better, mind you. However, now she's gone to the opposite extreme of telling us about a tiny pain that is there and gone in the blink of an eye, but she doesn't really express when that little pain turns into something bigger. We knew that her chest was a little uncomfortable from her port placement, but we didn't realize that there was more to it until Wednesday. Apparently, she didn't feel like telling her daddy on Tuesday. She told me on Wednesday, so I called the surgeon and her pedi. We made an appointment for Thursday since her pedi is only open for 3 hours on Wednesday's.
Our pedi appointment went well. The nurse at the surgeon's office had told me that they would likely want to access and flush the port, take labs and xrays. Our pedi said that she wanted to be really aggressive. She prescribed Augmentin as an antibiotic and a strong antibiotic cream. She also requested that we take a cup of water and two tablespoons of bleach (yes- Clorox!) to wash the area with to kill the bacteria. So we did.
The next day her chest hurt still, but it was in a different area. She waited until I got home from work to tell me this, after a full day of school. (GRRRRR!) So, knowing that this would mean a trip to the ER, I called her pedi. We agreed that it would, indeed, be the right decision to take her to the ER. I had planned on using the one by my work because they did have a pediatric floor, but our doc suggested we make the drive to an actual children's hospital. So off we went.
We spent the majority of Friday evening in the ER. They sent us home around 5:30 A.M. after taking cultures, finding out that her blood work was normal, and after a round of IV antibiotics. We got home and crashed hard! The night had been long and frustrating. The worst of it was when they had to access the port for the first time. We were prepared for her to have a hard time emotionally, but since the area around the port was infected, it was harder.
At home she slept in until 3 P.M.!!! Obviously, she was quite tired and worn out from the night in the ER. After she woke up my phone rang. It was the hospital calling to say that they found "Gram Positive Cocci" growing in her culture. After a quick Google search I found that it's a class of bacteria that includes staph and strep. Not very surprising. It also turned out that the antibiotic they had given her in the ER was more for meningitis and not meant for staph or strep, so they wanted us to come back to the ER.
Once we got here we realized that no one really knew what to do with us! Someone had dropped the ball and forgotten to write notes. We were told downstairs that they weren't 100% sure we were staying. I knew. You can call it crazy, psychic, coincidence or whatever else you like, but I know things, and I knew that we would be staying. Just like I knew that we would be the ones to develop a crisis like this. That's how we roll.
We talked to the doctor for a few minutes before he decided to keep her. Naturally, part of his reasoning is because of her being immune suppressed. In a child with no other issues they would probably have sent them packing, but that could be a mistake with dire consequences in an immune suppressed child. So, they got us a room upstairs. Because nothing is ever normal for us, they told us the wrong room number. The transport lady, a worker from Child Life, Emily & I all went to the right room on the wrong floor. It even said "Hi, Emily!" on her TV screen. There was no bed in the room and no name on the door. They finally found out where we were supposed to go! Up to the 8th floor, in a room with an amazing view of the city and the bay!
So far, we're pretty much just chillin'. The worst part of her stay so far has been accessing the port for the second time (still with an infection lingering) and drawing blood out of her arm. She was so, so upset about that, but their reasoning was very logical. They needed to gather more blood for more cultures from the port to see if it was a fluke, but they also needed to get a peripheral to see if the bacteria had spread to the rest of her body. Makes sense, right?
The cultures take 24-48 hours to come back, but apparently on a weekend there isn't really much of an interest when it's not a huge rush. That's fine. Aside from missing Daddy & her siblings, it truly hasn't been a bad stay. Hey, there's TV, movies, internet, room service, a great view, and quiet (yeah- in the hospital!) We've been told not to expect the quiet to last until tomorrow. For now it's been nice. They say that tomorrow there will be a ton of residents all wandering around the floor, med students, and other staff.
So we pretty much just have to wait for the cultures to come back and stay on antibiotics. (Just her, not me!) They said that once they find out what type of bacteria had grown on the first culture they'll have a better idea of exactly which antibiotic to use. Hopefully after finding that out we'll be able to go home! I know that this is the best place for her to be. She knows that, too. She told me this morning that this must be a good idea because her pain went from being between a 6-7 to a 1 on the scale from 1-10. Thank God this time she's used to hospital life. Last October when we stayed at Shands, it was truly hell. Neither of us could wait to go home, we were so far away from home, and she was so scared. At least this time she is familiar with the routine, and the port makes her even more brave than we already know she is.
Oh! And one last note: The Child Life worker that escorted us up here is awesome! She came back to help them access her port yesterday, then back again to draw the peripherals. She promised to visit today, and she did! Not only did she come visit, but she left Em to nap and came back with a Taylor Swift Barbie doll! She also brought some Halloween stuff for her to paint, so she's had a busy night. Everyone here has been fantastic (minus one phlebotomist), but this lady has just been amazing. Hopefully tomorrow there will be more to do. Nothing is open on the weekends, but tomorrow the gift shop & library will be open. I can't wait to get her out a little bit! Hopefully we'll be back out tomorrow. We have an early appointment at Shands on Wednesday for her meds, a GI appointment for her in the afternoon and a new patient appointment for my son with our rheumy. Wish us luck! And prayers would be wonderful for a quick recovery and all of the bacteria to be GONE. Thank you all! With love from ACH <3
So, she still doesn't really have a good grasp on when it's important to speak up when it comes to her body. She's gotten much, much better, mind you. However, now she's gone to the opposite extreme of telling us about a tiny pain that is there and gone in the blink of an eye, but she doesn't really express when that little pain turns into something bigger. We knew that her chest was a little uncomfortable from her port placement, but we didn't realize that there was more to it until Wednesday. Apparently, she didn't feel like telling her daddy on Tuesday. She told me on Wednesday, so I called the surgeon and her pedi. We made an appointment for Thursday since her pedi is only open for 3 hours on Wednesday's.
Our pedi appointment went well. The nurse at the surgeon's office had told me that they would likely want to access and flush the port, take labs and xrays. Our pedi said that she wanted to be really aggressive. She prescribed Augmentin as an antibiotic and a strong antibiotic cream. She also requested that we take a cup of water and two tablespoons of bleach (yes- Clorox!) to wash the area with to kill the bacteria. So we did.
The next day her chest hurt still, but it was in a different area. She waited until I got home from work to tell me this, after a full day of school. (GRRRRR!) So, knowing that this would mean a trip to the ER, I called her pedi. We agreed that it would, indeed, be the right decision to take her to the ER. I had planned on using the one by my work because they did have a pediatric floor, but our doc suggested we make the drive to an actual children's hospital. So off we went.
We spent the majority of Friday evening in the ER. They sent us home around 5:30 A.M. after taking cultures, finding out that her blood work was normal, and after a round of IV antibiotics. We got home and crashed hard! The night had been long and frustrating. The worst of it was when they had to access the port for the first time. We were prepared for her to have a hard time emotionally, but since the area around the port was infected, it was harder.
At home she slept in until 3 P.M.!!! Obviously, she was quite tired and worn out from the night in the ER. After she woke up my phone rang. It was the hospital calling to say that they found "Gram Positive Cocci" growing in her culture. After a quick Google search I found that it's a class of bacteria that includes staph and strep. Not very surprising. It also turned out that the antibiotic they had given her in the ER was more for meningitis and not meant for staph or strep, so they wanted us to come back to the ER.
Once we got here we realized that no one really knew what to do with us! Someone had dropped the ball and forgotten to write notes. We were told downstairs that they weren't 100% sure we were staying. I knew. You can call it crazy, psychic, coincidence or whatever else you like, but I know things, and I knew that we would be staying. Just like I knew that we would be the ones to develop a crisis like this. That's how we roll.
We talked to the doctor for a few minutes before he decided to keep her. Naturally, part of his reasoning is because of her being immune suppressed. In a child with no other issues they would probably have sent them packing, but that could be a mistake with dire consequences in an immune suppressed child. So, they got us a room upstairs. Because nothing is ever normal for us, they told us the wrong room number. The transport lady, a worker from Child Life, Emily & I all went to the right room on the wrong floor. It even said "Hi, Emily!" on her TV screen. There was no bed in the room and no name on the door. They finally found out where we were supposed to go! Up to the 8th floor, in a room with an amazing view of the city and the bay!
So far, we're pretty much just chillin'. The worst part of her stay so far has been accessing the port for the second time (still with an infection lingering) and drawing blood out of her arm. She was so, so upset about that, but their reasoning was very logical. They needed to gather more blood for more cultures from the port to see if it was a fluke, but they also needed to get a peripheral to see if the bacteria had spread to the rest of her body. Makes sense, right?
The cultures take 24-48 hours to come back, but apparently on a weekend there isn't really much of an interest when it's not a huge rush. That's fine. Aside from missing Daddy & her siblings, it truly hasn't been a bad stay. Hey, there's TV, movies, internet, room service, a great view, and quiet (yeah- in the hospital!) We've been told not to expect the quiet to last until tomorrow. For now it's been nice. They say that tomorrow there will be a ton of residents all wandering around the floor, med students, and other staff.
So we pretty much just have to wait for the cultures to come back and stay on antibiotics. (Just her, not me!) They said that once they find out what type of bacteria had grown on the first culture they'll have a better idea of exactly which antibiotic to use. Hopefully after finding that out we'll be able to go home! I know that this is the best place for her to be. She knows that, too. She told me this morning that this must be a good idea because her pain went from being between a 6-7 to a 1 on the scale from 1-10. Thank God this time she's used to hospital life. Last October when we stayed at Shands, it was truly hell. Neither of us could wait to go home, we were so far away from home, and she was so scared. At least this time she is familiar with the routine, and the port makes her even more brave than we already know she is.
Oh! And one last note: The Child Life worker that escorted us up here is awesome! She came back to help them access her port yesterday, then back again to draw the peripherals. She promised to visit today, and she did! Not only did she come visit, but she left Em to nap and came back with a Taylor Swift Barbie doll! She also brought some Halloween stuff for her to paint, so she's had a busy night. Everyone here has been fantastic (minus one phlebotomist), but this lady has just been amazing. Hopefully tomorrow there will be more to do. Nothing is open on the weekends, but tomorrow the gift shop & library will be open. I can't wait to get her out a little bit! Hopefully we'll be back out tomorrow. We have an early appointment at Shands on Wednesday for her meds, a GI appointment for her in the afternoon and a new patient appointment for my son with our rheumy. Wish us luck! And prayers would be wonderful for a quick recovery and all of the bacteria to be GONE. Thank you all! With love from ACH <3
Wednesday, October 5, 2011
Family Camp Was Amazing!
This past weekend we went to our local "Hole- In- The- Wall- Camp". These are the camps that Paul Newman's product lines help to support. These camps are amazing in so many ways. To start, they are tailored to sick children. These people realize that it's not fair or fun to live in pain every day, to have to spend so much time at the hospital or doctor's offices, and have to go through frequent testing. They also realize that many of these kids are on so many meds that they couldn't go to a "regular" camp. These types of camps are filled with counselors that volunteer- because they want to. They are medical students, nurses, doctors. They also have a disease-specific doctor on hand because you just never know what may happen. It's a safe haven, filled with love. To have a family weekend is amazing! Emily had gone to this camp twice for a week each time. She was so sad to leave it! She looked forward to this opportunity to share it with us.
It's also a wonderful experience to get together with other people that are going through similar situations. You really feel a strong sense of community. They want the parents to do their own thing to recharge. Many of us are happiest just watching our kids have fun :) I had a lovely time following my kids around, watching them excitedly make cars and animals in wood shop, checking out the boats, doing crafts, participating in the talent show, etc. It was really cool watching Emily do all of the chants and the little cheers they had. Like she totally belonged. That was cool. Another "Mom Moment" happened during the opening campfire. One of the coolest ladies EVER, who just happens to be named Dorcas, was talking about how everyone was going to get a set of beads, but she was giving out 3 to special people. (Mind you, I'm going deaf; I don't hear nearly as much as I want to , and since I couldn't rewind the moment, I totally missed it.) For whatever reason, Emily was one of those 3 special people. I didn't hear the why, and I'm not even sure how she knew exactly where Emily was, but she did. I suppose she could have remembered her from last summer, but Em looks so different. Any which way, it was truly amazing, and really touching. Em also really enjoyed being in a bed right next to my bed :) Sleeping only 3 feet away from Mom makes her feel safe. <3 She did have a food meltdown on the first night, but otherwise she had an amazing weekend.
The family "Pals" are volunteers that follow the kids around. They specialize in making the kids feel loved and happy. They bond with the family, but especially the kids. They have them "serve" the family, hold open doors- totally spoil the family. We had 3 pals. Our pal, Brittany, has Lupus. She told us that she refused to take her Prednisone, which caused kidney failure. She spent half of her time with us, and half in the arts and crafts area. She has her IV port in her leg, and it keeps slipping so she has to spend most of her time in her wheelchair. Our other pals were pushing her around. I think it was a blessing having her. She could understand better than the other two how Emily felt. She was a camp kid, volunteering because she loved the camp and the way it made her feel. Our pal Jake was in school working on dual masters in business & sports. He & Zach got along very well :) Our last pal was Stephanie. She was my favorite :) She was only 21... close to Gir's age. She's a medical student, working her way through college in a lab that's doing research testing for Lupus. I was so excited to hear that!!! She was down to Earth like a good teenager, able to fit in with the kids like she was 16. Not only did she and Gir get along well, but she & Emily did, too. Em schooled her in rheumatology. I think they impressed each other. It was lovely to meet them all, and a wonderful treat getting to know them. Many special people make up this camp!
My last bit for the evening... Well, we're finally on the way to getting my son "figured out". I had noticed a while ago that his hands look puffy. While at camp, another mom said the same thing. (Thank you again for saying it!!! I never would have thought to jump on it otherwise.) After talking to Kevin about it, sitting at the dinner table, I look over and see one of our rheumatologists speaking to someone. So I thought, hmmm, she's here in a professional capacity, volunteering her time. It couldn't hurt to ask her to look him over, could it? She was totally cool about it. She said that he's hypermobile, to start with. And she said that, judging by his reaction, she believes he has arthritis in his finger. She didn't check his jaw, but combined with the finger, the severity of the psoriasis, the nail involvement, the heel pain, the clicking of the jaw, etc, she suggested we make a new patient appointment for him. I had his blood drawn yesterday for labwork. I had requested the Rheumatoid Factor panel, the inflammatory panel, the HLA-B's, (Human Leukocyte Antigen's are often positive with the spondylarthropy family), and I added an ANA. (Is that wrong?) Hopefully those will be back in the next few days. Those should tell us if there's anything going on, though not necessarily. I requested the lab send a copy to the rheumy. That should help to get things started. I really, really hope we're wrong. I really want to be. We shall see. We're just taking it all one day at a time.
It's also a wonderful experience to get together with other people that are going through similar situations. You really feel a strong sense of community. They want the parents to do their own thing to recharge. Many of us are happiest just watching our kids have fun :) I had a lovely time following my kids around, watching them excitedly make cars and animals in wood shop, checking out the boats, doing crafts, participating in the talent show, etc. It was really cool watching Emily do all of the chants and the little cheers they had. Like she totally belonged. That was cool. Another "Mom Moment" happened during the opening campfire. One of the coolest ladies EVER, who just happens to be named Dorcas, was talking about how everyone was going to get a set of beads, but she was giving out 3 to special people. (Mind you, I'm going deaf; I don't hear nearly as much as I want to , and since I couldn't rewind the moment, I totally missed it.) For whatever reason, Emily was one of those 3 special people. I didn't hear the why, and I'm not even sure how she knew exactly where Emily was, but she did. I suppose she could have remembered her from last summer, but Em looks so different. Any which way, it was truly amazing, and really touching. Em also really enjoyed being in a bed right next to my bed :) Sleeping only 3 feet away from Mom makes her feel safe. <3 She did have a food meltdown on the first night, but otherwise she had an amazing weekend.
The family "Pals" are volunteers that follow the kids around. They specialize in making the kids feel loved and happy. They bond with the family, but especially the kids. They have them "serve" the family, hold open doors- totally spoil the family. We had 3 pals. Our pal, Brittany, has Lupus. She told us that she refused to take her Prednisone, which caused kidney failure. She spent half of her time with us, and half in the arts and crafts area. She has her IV port in her leg, and it keeps slipping so she has to spend most of her time in her wheelchair. Our other pals were pushing her around. I think it was a blessing having her. She could understand better than the other two how Emily felt. She was a camp kid, volunteering because she loved the camp and the way it made her feel. Our pal Jake was in school working on dual masters in business & sports. He & Zach got along very well :) Our last pal was Stephanie. She was my favorite :) She was only 21... close to Gir's age. She's a medical student, working her way through college in a lab that's doing research testing for Lupus. I was so excited to hear that!!! She was down to Earth like a good teenager, able to fit in with the kids like she was 16. Not only did she and Gir get along well, but she & Emily did, too. Em schooled her in rheumatology. I think they impressed each other. It was lovely to meet them all, and a wonderful treat getting to know them. Many special people make up this camp!
My last bit for the evening... Well, we're finally on the way to getting my son "figured out". I had noticed a while ago that his hands look puffy. While at camp, another mom said the same thing. (Thank you again for saying it!!! I never would have thought to jump on it otherwise.) After talking to Kevin about it, sitting at the dinner table, I look over and see one of our rheumatologists speaking to someone. So I thought, hmmm, she's here in a professional capacity, volunteering her time. It couldn't hurt to ask her to look him over, could it? She was totally cool about it. She said that he's hypermobile, to start with. And she said that, judging by his reaction, she believes he has arthritis in his finger. She didn't check his jaw, but combined with the finger, the severity of the psoriasis, the nail involvement, the heel pain, the clicking of the jaw, etc, she suggested we make a new patient appointment for him. I had his blood drawn yesterday for labwork. I had requested the Rheumatoid Factor panel, the inflammatory panel, the HLA-B's, (Human Leukocyte Antigen's are often positive with the spondylarthropy family), and I added an ANA. (Is that wrong?) Hopefully those will be back in the next few days. Those should tell us if there's anything going on, though not necessarily. I requested the lab send a copy to the rheumy. That should help to get things started. I really, really hope we're wrong. I really want to be. We shall see. We're just taking it all one day at a time.
Thursday, September 29, 2011
The port is in!
Yesterday was a completely exhausting, emotional roller coaster of a day- but very successful! Since Kevin had to take our son to school in the morning, he stayed home while Emily & I got up at 2 A.M. to get ready to leave for the hospital. We had to be there at 6, and our drive is about 2.5 hours. We made decent time, and there weren't too many people there yet. She was so brave, sitting there reading a little, chatting, and watching TV. When they called us and took us back, she didn't try to run away like I thought she might. She charged ahead.
The first thing that I noticed was there were two other kids waiting for surgery. They were both around her age, maybe just a little younger. One was having a tonsilectomy and adenoidectomy. The other was there for tubes and adenoids. Child Life came in to talk to the kids, prepare them, make them comfortable. We got the adult nurse that started with "I see you have a history". While he was very nice, I couldn't help but wish that we hadn't gone through so much that we didn't need Child Life. As they were about to take her back to anesthesia, the surgeons were called back to an emergency. So we waited. They found a TV for her, and she busied herself with Cartoon Network. By 8:40 A.M., they finally took her back. I hugged and kissed her, told her I love her, and she gave me a quick "see you soon!" She told me later that as she got back into prep she started to cry. ;( We spoke to many, many people about this. We were told by most of them that the surgery was pretty much just like getting a blood draw, but in the chest. No worse than that, right? I went with that because I didn't want to scare her, and it's easier to think about when the picture is all neat and tidy, right?
The wait seemed to take forever, but finally they called downstairs to say that she was done and she did well. As I went upstairs, I ran into the surgeon so he took me back to her and explained the situation as we walked. He said that they tried her upper left- where they normally go- but it just wasn't working. They ended up in the lower right/ middle area of her chest. (He made it so she could wear a swimsuit without it showing.) However, even there the vein wasn't good. He said that she has really bad veins but, "God willing, this should last her 2 years or so". Because of the veins being so bad, he had to run the catheter tube up into the main vein in her neck. So she has 3 areas that were cut into. She said that the worst of the pain is coming from the neck.
The only thing that she complained to the surgeon about was the IV in her hand. She yelled at him that she wanted that OUT. He told her a nurse would be along after a chest X-ray was done. As soon as the surgeon walked away & I turned to her, she started sobbing. "This was a bad idea, I want it out! It hurts too badly, Mommy. Get it out!" (About the port) I started crying with her until a very alert nurse came over to help us out. I also didn't realize that the surgeon's resident had walked in. They hooked her up with pain meds very quickly. Not only did she take the meds with no complaint but she also drank right away- a good sign. As soon as they started to kick in she calmed down. She started chatting with the nurses a little later about why she needed this and how great it was going to be. As soon as she got her chest x-ray she was cleared to head upstairs to her infusion.
For the first time ever she wasn't freaking out when the nurses came over to start her IV. She told them that this was the easiest ever and she was really happy about getting the port. Totally worth it.
We had other things to talk to the doctor about. We didn't have an appointment but I asked the nurses what we should do. Em has had blood in her stool somewhat frequently lately. I've called a few times about it. I know it's hard to tell what's happening based off of that. I suspected her Mobic. This happened to her when she was on Naproxen, too. She wasn't on Prilosec then, though. One of the nurse practitioners came in to talk to us about it. A week or two ago, Em had a bad stomach ache. I knew that it hurt, but I didn't know how badly. Up in recovery she had said something about "If I die at a young age"... I don't remember the rest because I stopped her to ask "Do you think you're going to die at a young age?" She replied, "No, but I did the other week when my stomach hurt so badly." I had no idea it was that bad, so as far as she's come with informing us about her pain, she still has a way to go. So, after telling them about that, they agree that it may well be the NSAID doing some damage. Just in case, they gave us a smear test to take home. We have to take a sample from any 3 random bowel movements, then take all 3 samples back for our next appointment. They say that if there's really blood in there, it may not be visible but it will show in the test. All I could think of was NCIS and Abbie's character. (I do love forensics...)
To top off the day, she shared with me that Emily's last labs showed that her IgG had dropped to 550. She said that if they dropped below 500 then they would order an IViG for our next Remicade infusion. Now, to backtrack to when we first started the Rituxan, at first it seemed like it was magically reversing her series of illnesses. She had been sick constantly until we tried it, which is ridiculous since it's an immune suppressor. Then she got my cold. Between the cold and the surgery, I knew her counts would be low. I even told the nurse to plan on it. I got a copy of her labs last night before we left. IgG: 459. They haven't called me to tell me that yet, but they had said that if they were low they were going to try her on the 5 hour IViG infusion, which will mean another very early day for us, and likely closing the place out. I expected a call today, actually. Maybe the rest doesn't mean too much, and I never got around to looking it up today, but she's off on a LOT of things. Her chloride, Monocytes & Red Cell Distribution Width are high; the RDW is always off, but I don't know why. Protein, IgG, IGM and Lymphs are low. I know the meds are working on her inflammation because the general inflammatory markers are awesome! Her C- Reactive Protein (CRP) is <0.2! Her Sed Rate is 9. When she was kept inpatient last year, her Sed was 74 or 79. Ouch!!! And her muscle enzymes all look fantastic! Her ALT & AST are 31 & 32. I want to say that high starts at 40. Her ALK looked good, too. ALD wasn't back yet. These meds are leading us in the right direction, I'm sure.
The best part of the day? Hanging with friends in the infusion room :) Little Sadie was there, too! I had no idea they were going to be there, but it was so nice to just sit back and chit chat like the day hadn't been an emotional roller coaster. The girls are sooo funny. They are both so shy that they won't really talk to each other. They ask us to ask their questions for them. Too cute!!! However, when it came to "Tangled", they chatted like they had known each other a while. It was a nice end to a very long day. We finally left around 4:30, making it the fastest infusion EVER for us. And that was with getting upstairs about 1/2 hour after her noon appointment.
So much has happened that my mind is still whirling. I'm probably missing a bunch, but I'm so exhausted still. I was completely worthless today. I think I've lost everything at least once today. She's doing great. They sent her home with about 2 days worth of Oxycodone. I was a little shocked at that, but I know she needs it. I was expecting Percocet or Vicodin, Demerol, something not as heavy-duty. She's slept a lot, and she's having a bit of a hard time doing normal things, but she knows that it won't be long before she's healed. The incisions look fantastic!!! I was expecting much worse. It almost looks like they used a clear glue over the stitches. That makes the wounds look nicer. Tonight, despite the pain she's feeling good about it. She knows that this will make her life better. No worries, no stress, no anxiety every month. Thank you, Lord!!! She amazes me so much. Most kids would have freaked, but she's calm, cool and collected. She's so sweet, so smart and so adult-like. That makes me a little sad. I'd love for her to be rambunctious, running around, a little ditzy even. At least then she'd be a kid. She's never really had that chance. I am unbelievably proud of her. I'm a rock for my family, at keeping things going, but she's my little reminder, telling us what we're forgetting, keeping track. She's so strong, so amazing!!! Yes, the situation really sucks, but we are so blessed with these kids. <3 I couldn't have asked for better children. All of them are amazing!
I appreciate the prayers from anyone that took the time to pray for us. I never thought that we would ever need prayers like this, but obviously they are working. This could have been way worse. As tired as we are, I feel like a weight has been lifted off of me with this. I know to lean on Him when I need strength. He is my strength, He is my refuge. Thank you for your prayers. <3
The first thing that I noticed was there were two other kids waiting for surgery. They were both around her age, maybe just a little younger. One was having a tonsilectomy and adenoidectomy. The other was there for tubes and adenoids. Child Life came in to talk to the kids, prepare them, make them comfortable. We got the adult nurse that started with "I see you have a history". While he was very nice, I couldn't help but wish that we hadn't gone through so much that we didn't need Child Life. As they were about to take her back to anesthesia, the surgeons were called back to an emergency. So we waited. They found a TV for her, and she busied herself with Cartoon Network. By 8:40 A.M., they finally took her back. I hugged and kissed her, told her I love her, and she gave me a quick "see you soon!" She told me later that as she got back into prep she started to cry. ;( We spoke to many, many people about this. We were told by most of them that the surgery was pretty much just like getting a blood draw, but in the chest. No worse than that, right? I went with that because I didn't want to scare her, and it's easier to think about when the picture is all neat and tidy, right?
The wait seemed to take forever, but finally they called downstairs to say that she was done and she did well. As I went upstairs, I ran into the surgeon so he took me back to her and explained the situation as we walked. He said that they tried her upper left- where they normally go- but it just wasn't working. They ended up in the lower right/ middle area of her chest. (He made it so she could wear a swimsuit without it showing.) However, even there the vein wasn't good. He said that she has really bad veins but, "God willing, this should last her 2 years or so". Because of the veins being so bad, he had to run the catheter tube up into the main vein in her neck. So she has 3 areas that were cut into. She said that the worst of the pain is coming from the neck.
The only thing that she complained to the surgeon about was the IV in her hand. She yelled at him that she wanted that OUT. He told her a nurse would be along after a chest X-ray was done. As soon as the surgeon walked away & I turned to her, she started sobbing. "This was a bad idea, I want it out! It hurts too badly, Mommy. Get it out!" (About the port) I started crying with her until a very alert nurse came over to help us out. I also didn't realize that the surgeon's resident had walked in. They hooked her up with pain meds very quickly. Not only did she take the meds with no complaint but she also drank right away- a good sign. As soon as they started to kick in she calmed down. She started chatting with the nurses a little later about why she needed this and how great it was going to be. As soon as she got her chest x-ray she was cleared to head upstairs to her infusion.
For the first time ever she wasn't freaking out when the nurses came over to start her IV. She told them that this was the easiest ever and she was really happy about getting the port. Totally worth it.
We had other things to talk to the doctor about. We didn't have an appointment but I asked the nurses what we should do. Em has had blood in her stool somewhat frequently lately. I've called a few times about it. I know it's hard to tell what's happening based off of that. I suspected her Mobic. This happened to her when she was on Naproxen, too. She wasn't on Prilosec then, though. One of the nurse practitioners came in to talk to us about it. A week or two ago, Em had a bad stomach ache. I knew that it hurt, but I didn't know how badly. Up in recovery she had said something about "If I die at a young age"... I don't remember the rest because I stopped her to ask "Do you think you're going to die at a young age?" She replied, "No, but I did the other week when my stomach hurt so badly." I had no idea it was that bad, so as far as she's come with informing us about her pain, she still has a way to go. So, after telling them about that, they agree that it may well be the NSAID doing some damage. Just in case, they gave us a smear test to take home. We have to take a sample from any 3 random bowel movements, then take all 3 samples back for our next appointment. They say that if there's really blood in there, it may not be visible but it will show in the test. All I could think of was NCIS and Abbie's character. (I do love forensics...)
To top off the day, she shared with me that Emily's last labs showed that her IgG had dropped to 550. She said that if they dropped below 500 then they would order an IViG for our next Remicade infusion. Now, to backtrack to when we first started the Rituxan, at first it seemed like it was magically reversing her series of illnesses. She had been sick constantly until we tried it, which is ridiculous since it's an immune suppressor. Then she got my cold. Between the cold and the surgery, I knew her counts would be low. I even told the nurse to plan on it. I got a copy of her labs last night before we left. IgG: 459. They haven't called me to tell me that yet, but they had said that if they were low they were going to try her on the 5 hour IViG infusion, which will mean another very early day for us, and likely closing the place out. I expected a call today, actually. Maybe the rest doesn't mean too much, and I never got around to looking it up today, but she's off on a LOT of things. Her chloride, Monocytes & Red Cell Distribution Width are high; the RDW is always off, but I don't know why. Protein, IgG, IGM and Lymphs are low. I know the meds are working on her inflammation because the general inflammatory markers are awesome! Her C- Reactive Protein (CRP) is <0.2! Her Sed Rate is 9. When she was kept inpatient last year, her Sed was 74 or 79. Ouch!!! And her muscle enzymes all look fantastic! Her ALT & AST are 31 & 32. I want to say that high starts at 40. Her ALK looked good, too. ALD wasn't back yet. These meds are leading us in the right direction, I'm sure.
The best part of the day? Hanging with friends in the infusion room :) Little Sadie was there, too! I had no idea they were going to be there, but it was so nice to just sit back and chit chat like the day hadn't been an emotional roller coaster. The girls are sooo funny. They are both so shy that they won't really talk to each other. They ask us to ask their questions for them. Too cute!!! However, when it came to "Tangled", they chatted like they had known each other a while. It was a nice end to a very long day. We finally left around 4:30, making it the fastest infusion EVER for us. And that was with getting upstairs about 1/2 hour after her noon appointment.
So much has happened that my mind is still whirling. I'm probably missing a bunch, but I'm so exhausted still. I was completely worthless today. I think I've lost everything at least once today. She's doing great. They sent her home with about 2 days worth of Oxycodone. I was a little shocked at that, but I know she needs it. I was expecting Percocet or Vicodin, Demerol, something not as heavy-duty. She's slept a lot, and she's having a bit of a hard time doing normal things, but she knows that it won't be long before she's healed. The incisions look fantastic!!! I was expecting much worse. It almost looks like they used a clear glue over the stitches. That makes the wounds look nicer. Tonight, despite the pain she's feeling good about it. She knows that this will make her life better. No worries, no stress, no anxiety every month. Thank you, Lord!!! She amazes me so much. Most kids would have freaked, but she's calm, cool and collected. She's so sweet, so smart and so adult-like. That makes me a little sad. I'd love for her to be rambunctious, running around, a little ditzy even. At least then she'd be a kid. She's never really had that chance. I am unbelievably proud of her. I'm a rock for my family, at keeping things going, but she's my little reminder, telling us what we're forgetting, keeping track. She's so strong, so amazing!!! Yes, the situation really sucks, but we are so blessed with these kids. <3 I couldn't have asked for better children. All of them are amazing!
I appreciate the prayers from anyone that took the time to pray for us. I never thought that we would ever need prayers like this, but obviously they are working. This could have been way worse. As tired as we are, I feel like a weight has been lifted off of me with this. I know to lean on Him when I need strength. He is my strength, He is my refuge. Thank you for your prayers. <3
Monday, September 26, 2011
Port placement is Tuesday
As we get closer and closer to Tuesday, I find myself getting more & more nervous. I'm sure that this port will be the answer to our prayers, but I'm still dreading the procedure. We had a month long wait to get in to see the surgeon for the consult. Then, her infusion was scheduled for the next week along with a doctor appointment, but they didn't have an opening for the surgery for that day, so we had to wait another 5 weeks until her next infusion. That really figured because in August we were there every week, and in July we were up there twice. This was the first time in a while that we had a few week break. Unfortunately, that break allowed her anxiety to build and build. Emily has slept in our room almost every night for the past month. And yet, when I asked her if she wanted to cancel the procedure, she said no. She realizes the benefits outweigh the risk.
It amazes me how strong she is. The things that other kids couldn't handle she breezes through. She is so logical, so hard working, so brave. Her diseases may be hell on her, but they have helped to shape her into an amazing little girl that is wise beyond her years. It's sad in some ways; knowing that her life is shaped around pain, for one. She's had to make some hard choices. I'm so proud of her.
I'm feeling very conflicted right now. On the one hand, I'm so thrilled that port is being placed. Especially after her last appointment where she hit and kicked the nurses for a while. I was mortified. I couldn't get her to stop, and they were all so sweet and patient. It makes me angry that a surgical implant like this should be a blessing, a great thing for us. How wrong!!! No little kid should have to go through this, and yet she wants to do it. She has really grown up this year.
We've been trying to think of a Christian song that talks about fear. She told me that she wished she could find one that could help her, but my mind is over-stressed and drawing a blank. Anyone have any suggestions? I may still have time to download some. Tomorrow I will have to be in bed by 8 or 9 P.M. We have to be at the hospital at 7 A.M. We live about 2.5 hours away. I am sooo not looking forward to this.
On a different note, we're still working on getting my son figured out. Our pedi wrote us a prescription to take him for a panoramic, but the radiology place by us no longer has the panoramic. They suggest a CT scan, but I think I would prefer an MRI. I know that's what the TMJ specialist in Birmingham suggests. I'm going to call them tomorrow (if I remember) and see if they can either give us a different prescription or refer us to a TMJ specialist locally. I've run into roadblocks at every turn trying to get him checked out. Also, our pedi didn't give Kevin a prescription for labwork, but they must have read my note after Kevin left them. I got a call a few hours later saying that I can pick up the paper copy anytime. I had noted that, at the session in the conference, the Alabama doctor said that 83% of JA children have arthritis in their jaw, but they don't know it. It's painless and silent. He also said that most children's start in their jaw, but it goes undiagnosed. I'm still praying that we don't need to worry about that. I've spoken with several people that have psoriasis and TMJ, so hopefully that's all it is. Anyway, I also requested that *IF* they ordered labs, to please run the RF panel, the inflammatory panel, and the HLA-B tests. Those point specifically to spondylarthropathies, which run with psoriatic arthritis. Hopefully, all will be negative. I don't need another baby in pain, though at least then maybe we could get his psoriasis under control. It's very stubborn!
Needless to say, I'm having a rough week. He's cool with this. It doesn't really bother him, but I'm ticked off that I don't have any answers yet. I hate roadblocks. I know- I have time to be patient. I'm working on it. Really. And I'm holding up. I'm really used to this stress cycle. When things are quiet and going well, I'm very edgy and nervous. I think sometimes that most people don't ever have to deal with anything like this. They can be blissfully unaware that 300,000 kids are out there suffering silently. I miss being ignorant. Despite all of the blessings that we've had grace our lives since Em's diagnosis, I would gladly trade it all for 3 healthy, normal children. But then again, I bet that our house wouldn't be so happy and loving, we wouldn't count our blessings the way we do now, or try to see the bright side of everything, would we? While it doesn't define our lives, it's certainly an integral part. Life is what you make it.
It amazes me how strong she is. The things that other kids couldn't handle she breezes through. She is so logical, so hard working, so brave. Her diseases may be hell on her, but they have helped to shape her into an amazing little girl that is wise beyond her years. It's sad in some ways; knowing that her life is shaped around pain, for one. She's had to make some hard choices. I'm so proud of her.
I'm feeling very conflicted right now. On the one hand, I'm so thrilled that port is being placed. Especially after her last appointment where she hit and kicked the nurses for a while. I was mortified. I couldn't get her to stop, and they were all so sweet and patient. It makes me angry that a surgical implant like this should be a blessing, a great thing for us. How wrong!!! No little kid should have to go through this, and yet she wants to do it. She has really grown up this year.
We've been trying to think of a Christian song that talks about fear. She told me that she wished she could find one that could help her, but my mind is over-stressed and drawing a blank. Anyone have any suggestions? I may still have time to download some. Tomorrow I will have to be in bed by 8 or 9 P.M. We have to be at the hospital at 7 A.M. We live about 2.5 hours away. I am sooo not looking forward to this.
On a different note, we're still working on getting my son figured out. Our pedi wrote us a prescription to take him for a panoramic, but the radiology place by us no longer has the panoramic. They suggest a CT scan, but I think I would prefer an MRI. I know that's what the TMJ specialist in Birmingham suggests. I'm going to call them tomorrow (if I remember) and see if they can either give us a different prescription or refer us to a TMJ specialist locally. I've run into roadblocks at every turn trying to get him checked out. Also, our pedi didn't give Kevin a prescription for labwork, but they must have read my note after Kevin left them. I got a call a few hours later saying that I can pick up the paper copy anytime. I had noted that, at the session in the conference, the Alabama doctor said that 83% of JA children have arthritis in their jaw, but they don't know it. It's painless and silent. He also said that most children's start in their jaw, but it goes undiagnosed. I'm still praying that we don't need to worry about that. I've spoken with several people that have psoriasis and TMJ, so hopefully that's all it is. Anyway, I also requested that *IF* they ordered labs, to please run the RF panel, the inflammatory panel, and the HLA-B tests. Those point specifically to spondylarthropathies, which run with psoriatic arthritis. Hopefully, all will be negative. I don't need another baby in pain, though at least then maybe we could get his psoriasis under control. It's very stubborn!
Needless to say, I'm having a rough week. He's cool with this. It doesn't really bother him, but I'm ticked off that I don't have any answers yet. I hate roadblocks. I know- I have time to be patient. I'm working on it. Really. And I'm holding up. I'm really used to this stress cycle. When things are quiet and going well, I'm very edgy and nervous. I think sometimes that most people don't ever have to deal with anything like this. They can be blissfully unaware that 300,000 kids are out there suffering silently. I miss being ignorant. Despite all of the blessings that we've had grace our lives since Em's diagnosis, I would gladly trade it all for 3 healthy, normal children. But then again, I bet that our house wouldn't be so happy and loving, we wouldn't count our blessings the way we do now, or try to see the bright side of everything, would we? While it doesn't define our lives, it's certainly an integral part. Life is what you make it.
Thursday, September 15, 2011
A Little Good News :)
Hello!
I'm happy to report a little good news. :) While she's having some minor issues, Emily continues to do well since starting the Rituxan. I'm just thrilled!!! She says that an area of her lower back always hurts, and her wrist to elbow has been flaring a bit, but not enough for her to want to go back up on her Prednisone. She has chosen to continue on the 4.5MG dosing instead of going back up to 6MG. While it may not seem like a big difference, she feels it. She is also continuing to lose some of her steroid-belly. We don't really notice it on her, but we notice in the way her shirts fit her. The shirts that we ran out and bought her back in November when she suddenly gained 30 lbs are starting to look more like long baggy shirts. I'm hoping it will be no time before they look like dresses again.
I always worry about her with school. She likes school, and she works really hard. She LOVES to read, to write, to be creative. She loves her teacher this year, too! Her school is amazing, and they always put so much time and consideration into where the best classroom placement is for her. I really couldn't have her in a better place than where she is now. This is the fifth year in a row now that her teacher has told me that her class "mothers" her. I was told last night at open house that her classmates rally around her. I have worried often about her being teased or bullied because of the Prednisone weight. While it has happened on a small scale, she has yet to come home to me in tears.
Also at the open house, they told me how shocked they all were at how well she is doing :) Her school physical therapist had a goal for her to climb 5 stairs. Thanks to Rituxan, she's pretty much given up the elevator. (I forgot- she did say her knee hurt last night, but not enough to change med dosing for.) They are all so impressed over how well she's doing. I'm so glad. Last school year looked so bleak for her; I didn't think we'd be able to keep her in school. What a difference a small change can make, even when it looks so scary at first.
She is still stressing over her port placement. We have talked about it every night now. Just talking seems to be helping. Before she told us what was wrong, when she was trying to tough it out, she was spending a lot of nights in my bedroom. Tonight we discussed how God provides for our needs, we discussed what "Let go, let God" means, and how to accomplish it, and we talked about the phrase "What would Jesus do?", thanks to my son. I am so happy that they love church! Emily especially can draw strength when she's down or feeling bad. I'm thrilled that she has come to love our Lord!
We could use continued prayers if you would. We have her port placement on Sept 27th. It will be a very long day. Please pray for a great surgeon, for their hand to be guided and their mind as well. Thank you!
I'm happy to report a little good news. :) While she's having some minor issues, Emily continues to do well since starting the Rituxan. I'm just thrilled!!! She says that an area of her lower back always hurts, and her wrist to elbow has been flaring a bit, but not enough for her to want to go back up on her Prednisone. She has chosen to continue on the 4.5MG dosing instead of going back up to 6MG. While it may not seem like a big difference, she feels it. She is also continuing to lose some of her steroid-belly. We don't really notice it on her, but we notice in the way her shirts fit her. The shirts that we ran out and bought her back in November when she suddenly gained 30 lbs are starting to look more like long baggy shirts. I'm hoping it will be no time before they look like dresses again.
I always worry about her with school. She likes school, and she works really hard. She LOVES to read, to write, to be creative. She loves her teacher this year, too! Her school is amazing, and they always put so much time and consideration into where the best classroom placement is for her. I really couldn't have her in a better place than where she is now. This is the fifth year in a row now that her teacher has told me that her class "mothers" her. I was told last night at open house that her classmates rally around her. I have worried often about her being teased or bullied because of the Prednisone weight. While it has happened on a small scale, she has yet to come home to me in tears.
Also at the open house, they told me how shocked they all were at how well she is doing :) Her school physical therapist had a goal for her to climb 5 stairs. Thanks to Rituxan, she's pretty much given up the elevator. (I forgot- she did say her knee hurt last night, but not enough to change med dosing for.) They are all so impressed over how well she's doing. I'm so glad. Last school year looked so bleak for her; I didn't think we'd be able to keep her in school. What a difference a small change can make, even when it looks so scary at first.
She is still stressing over her port placement. We have talked about it every night now. Just talking seems to be helping. Before she told us what was wrong, when she was trying to tough it out, she was spending a lot of nights in my bedroom. Tonight we discussed how God provides for our needs, we discussed what "Let go, let God" means, and how to accomplish it, and we talked about the phrase "What would Jesus do?", thanks to my son. I am so happy that they love church! Emily especially can draw strength when she's down or feeling bad. I'm thrilled that she has come to love our Lord!
We could use continued prayers if you would. We have her port placement on Sept 27th. It will be a very long day. Please pray for a great surgeon, for their hand to be guided and their mind as well. Thank you!
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