Leap Day was just another day in the Hyde household! Adam went to work, Mason went to school, and Haylee and I went to clinic. We got to clinic on time even after circling the parking deck for what seemed like forever! Haylee had to have the dressing changed on her PICC line because of the little bit of bleeding it did. Leah and Brittany from inpatient wanted to give it time to dry and give her skin a rest, so Maggie changed it today. Haylee did really well with it, given that she hates having dressings changed! She didn't whine or cry at all!
The arsenic wasn't signed off on so it took about an hour before she was hooked up but thats when Maggie did the dressing change and she got started on her schoolwork early. Maggie hooked her up around 11:45am and off she went!
Haylee finished all her schoolwork given to her except for some Math worksheets that she didn't have. Her teacher sent the workbook home with our neighbor and she'll be able to finish it when her H/H teacher comes to visit this week. Since she was done early, she played the Wii and with a little girl there named Kayson. She's 5 and LOVES Haylee! Haylee rides around the clinic floor on the big wheels with her (she's too big for them but does it for Kayson. I'm pretty sure Haylee likes riding them too!). Kayson's mom says she doesn't have anyone to play with at home except her little brother so she's all over the place at clinic. Kayson's a sweetie pie! I ran around the floor with the both of them today. It actually was pretty fun! They are exhausting but you get your walking time in :)
We scooped up Mason from school and came home. Haylee played with Savannah for the first time in over a week and was excited about it. Haylee missed her.
We had just another day....I love them!! So much better than hospital days!
~Hope for Haylee~
February 29, 2012
February 28, 2012
2/28/12 - HOMEBOUND!!!
Haylee and I came home today!!
Haylee's blood culture from Sunday came back absolutely negative this morning! They scheduled her to have the PICC line put in her arm today, but we had no idea when. The ICU floors are first and then everyone else. She was able to go to school and after it was over, our nurse was on her way to get us because they were getting ready to get started.
They used an ultrasound to find her veins then put the EMLA cream on to help numb her skin. Just with that process, she was freaking out. The doctors decided to give her IV Versed to help her out instead of Versed by mouth (IV works faster and better!). Danielle from CL came and stayed with her and played games with her to help her relax. When it came time to put it in, I left. Danielle, the PICC nurses, her nurse (Brittany), and the charge nurse (Leah) were with her. It took about 30 minutes and everyone said she did great :)
An X-RAY had to be taken to make sure it was placed right and it turned out it was too far up so the PICC nurses had to come in and pull it down. Haylee did well with it and didn't even cry! I think having Danielle in there for that helped, too.
Brittany started her on her arsenic in the IV in her hand before they came to fix the PICC line to move things along faster. The site started to bleed a little and soaked the dressing some, but we were told that it wasn't soaked enough to change it and they would let Maggie know that it'll need changing tomorrow. Clinic is still on as scheduled for the rest of the week and through the end of the arsenic phase.
We left out of there about 5:30pm. Haylee's feeling great!!! We're so glad to be home :) :) :)
February 27, 2012
2/27/12 - Flashes of Hope was the highlight of our day
Haylee and I were bored today...again. The days are the same...meds, blood draws, waiting, sitting, doctor visits, meds, waiting, sitting, walking around, playroom time, meds, waiting, sitting....
Adam came by for breakfast around 9:30am but didn't get to see Haylee very long since she had school this morning at 10am. I went down at 11:30am to scoop her up and take her to get her picture made by Flashes of Hope (free for children with cancer and their families). I wasn't expecting to be pushed into the pictures but it was fun for the both of us. I had her dress in her pink shirt and tutu for the pictures...so cute!! I should get the album of all the shots they took of us together and her by herself in about a month.
After the pictures, we headed back upstairs for lunch. Haylee headed off to the playroom for a few hours (off and on) and I dozed on the couch/bed for those few hours. We didn't have much else to do. Haylee made a friend on the floor; a boy name Sal. They are the same age and like playing board games in the playroom.
The 'Leap Year Art Party' was at 4:30pm so Haylee went down with Brittany from CL and a few kids from the floor. I can only handle so much art stuff and she needed something to do. She was gone until about 5:30pm. We had dinner, she FINALLY got hooked up to her arsenic, went straight to antibiotics, and now we're just hanging out watching Disney Channel.
Brit, the day nurse, said that the doctors decided that Haylee would have the PICC line inserted tomorrow sometime (hopefully in the morning!). She's pretty nervous about it since she won't be put to sleep, just on Versed. Brittany from CL came by to talk to her more about the process and her fears. Haylee would listen to some of what she was saying and then shut her out from the rest. She ended up crying some when Brittany left because she was scared regardless of what Brittany and I were saying. I tried talking to her more but she wasn't hearing it. I told her I would leave her alone and if she wanted to talk more about it, we would. She never brought it up again, but later, she said she was only 10% scared of tomorrow. I guess she had to deal with it her own way. We'll see how she feels about it in the morning.
Since she got her arsenic so late, she won't be able to get it until around 2pm tomorrow at the earliest. We'll just have to hope that all the discharge paperwork is done and we will be ready to walk out the door as soon as it's done; that way we can treat it like a late clinic appointment!
Adam came by for breakfast around 9:30am but didn't get to see Haylee very long since she had school this morning at 10am. I went down at 11:30am to scoop her up and take her to get her picture made by Flashes of Hope (free for children with cancer and their families). I wasn't expecting to be pushed into the pictures but it was fun for the both of us. I had her dress in her pink shirt and tutu for the pictures...so cute!! I should get the album of all the shots they took of us together and her by herself in about a month.
After the pictures, we headed back upstairs for lunch. Haylee headed off to the playroom for a few hours (off and on) and I dozed on the couch/bed for those few hours. We didn't have much else to do. Haylee made a friend on the floor; a boy name Sal. They are the same age and like playing board games in the playroom.
The 'Leap Year Art Party' was at 4:30pm so Haylee went down with Brittany from CL and a few kids from the floor. I can only handle so much art stuff and she needed something to do. She was gone until about 5:30pm. We had dinner, she FINALLY got hooked up to her arsenic, went straight to antibiotics, and now we're just hanging out watching Disney Channel.
Brit, the day nurse, said that the doctors decided that Haylee would have the PICC line inserted tomorrow sometime (hopefully in the morning!). She's pretty nervous about it since she won't be put to sleep, just on Versed. Brittany from CL came by to talk to her more about the process and her fears. Haylee would listen to some of what she was saying and then shut her out from the rest. She ended up crying some when Brittany left because she was scared regardless of what Brittany and I were saying. I tried talking to her more but she wasn't hearing it. I told her I would leave her alone and if she wanted to talk more about it, we would. She never brought it up again, but later, she said she was only 10% scared of tomorrow. I guess she had to deal with it her own way. We'll see how she feels about it in the morning.
Since she got her arsenic so late, she won't be able to get it until around 2pm tomorrow at the earliest. We'll just have to hope that all the discharge paperwork is done and we will be ready to walk out the door as soon as it's done; that way we can treat it like a late clinic appointment!
February 26, 2012
2/26/12 - Sunday with Superheroes
Haylee and Nonna walked around the garden and went to the gift shop. Her and I hardly ever go to the gift shop! I guess that's what Nonnas are for :) They came in this morning to draw blood cultures that were supposed to be drawn last night. Leah said there must have been a miscommunication on their end so it wasn't done until today. That pushed possible negative results back about 12 hours. All of her blood cultures except 1 have came back positive for Baccillus (and all of them were done before the line was pulled) . Thursday's culture came back negative.
I came back to the hospital today. Leah told us that Haylee wouldn't go home with the IV in her hand but possibly with a PICC line in her arm. It's pretty much the same thing as the central line except it goes in on the inside of the arm right around the elbow, up the vein, and into a main vein in the heart as shown below:
I came back to the hospital today. Leah told us that Haylee wouldn't go home with the IV in her hand but possibly with a PICC line in her arm. It's pretty much the same thing as the central line except it goes in on the inside of the arm right around the elbow, up the vein, and into a main vein in the heart as shown below:
It can be inserted bedside or in a procedure room and it's not considered a surgery. She wouldn't even be put to sleep - just given Versed. The alternative is to stick her everyday and well, let's face it...it's not an alternative. I should know by tomorrow what the plan is. I'm all for the PICC line. It seems easy enough and so much better than the alternative.
We went downstairs to the Superhero Art Party. It was cute for the kids. Haylee could've cared less about the Superheroes. She was just bored and wanted something to do. Mason would've been in pure heaven with Spiderman and Batman! She was given a tutu and loved wearing it! She looked super cute :) Danielle, one of the CL Specialists, came by and updated her on her Beads of Courage. She has ran out of room on her current string and is starting to fill up the bag. Right now, the strung beads are hanging from her pole as well as the beads bag and a bug - all for decoration. We decorate what we can around here. When she comes back inpatient for a few weeks, we'll decorate the room again!
After dinner, she went to the playroom for a little while and played in their with a boy from the floor and a volunteer. She's relaxing now and winding down for bed. She's got alot of winding down to do cause she's been bouncing off the walls :)
"Optimism is the foundation of courage." - Nicholas Murray Butler
2/26/12 - Pictures from the weekend
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| Haylee with Kevin Cone (Wide Receiver - Atlanta Falcons) |
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| Haylee with Michael Palmer (Tight End - Atlanta Falcons) |
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| Haylee with one of the Atlanta Falcon Cheerleaders |
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| A cookie decorating party in the playroom |
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| Haylee and another little girl on the floor decorating cookies |
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| We were at the Superhero Art Party. She's wearing her Superhero Tutu! |
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| Haylee and Spiderman |
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| Haylee and Batman |
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| Posing for the camera! |
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| She was spinning around |
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| She was chasing a squirrel and it went in the bushes. I guess she thought she could catch it...poor squirrel! |
2/25/12 - Haylee's line was pulled out today :(
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| Haylee out cold after they pulled her line :( |
Haylee and my mom were in the playroom when we got there. She knew what was going to be happening and really wasn't scared - just a little nervous but who wouldn't be! Leah, her nurse (and the charge nurse who I just love), brought her in some Versed to help relax her and make her loopy before the procedure. She was REFUSING to take it. She knew it tasted bad and was not having it. My mom and I left and Leah dealt with her and eventually got her to take it. She was super mad!!
The surgeons came upstairs to get her and take her down to the OR. She had to go potty when we got down there but since she had taken the Versed, she was considered a fall risk. A bedpan was the only way to go and that was quite a feat! Her nurse was a man and he didn't want to invade her privacy so it was just me and her having to get it done. Eventually, she went and we got her all relaxed again. By the time she went back, she was laughing and giggling and I felt better about it.
The procedure went very well even though she had a reaction to something when they took the dressing off of her. They gave her IV Benadryl to help so with that and the gas they used to put her to sleep, she was out cold for hours. The doctors came in to talk to us and told us they were going to send her home tomorrow!! She doesn't need her line until she goes back inpatient, all of her arsenic treatments can go through the IV they put in her hand as an alternative and the blood cultures can be taken from it. That was exciting news!!!!
She woke up at about 3pm and was feeling fine. She ate and drank like the doctors wanted. Her and my mom also went downstairs to see the therapy dogs. A little after 7pm, my mom called me to let me know that the blood culture they took on Friday before the line came out was positive for the Baccillus. So, in turn, it was a great thing that the line came out. Because of the positive blood culture, she won't be coming home Sunday. She has to have 1 negative blood culture and then she can head for home! I'm thinking Monday or Tuesday (probably more like Tuesday) but we still have clinic everyday so that won't change. We'll be glad to get back into our normal clinic routine with Maggie!
"Courage is tiny pieces of fear all glued together." - Terry Guillemets
February 25, 2012
2/24/12 - She's so bored :( **new update**
She was up early this morning and I was woke up to the sound of her talking to someone - the 2 day nurses. She was just sitting there carrying on a conversation with them like she's known them forever! After she had breakfast, she went down to school and finished up her schoolwork from this week. My mom and Adam were there early and walked down with me to get her. We all went and had lunch then Adam had to go back to work. My mom and I went back upstairs...and just sat. There wasn't much of anything going on in the Hospital Happenings but the 1 thing that was going on wasn't until 2pm. Bless her heart, she's just bored. I stuck around until the doctor came in to update me on her situation.
Colleen came in and said that they determined what bacteria Haylee has - baccillus. She could've got it from anywhere because it's one of those bacterias thats just in the environment. As of that point (around 1pm) the culture taken on Feb. 23 has remained negative! A full 48 hours will determine for sure, but all the positive cultures have began growing within 12 hours from the time the cultures were taken. Colleen also said they were going to get the Infectious Disease doctors involved just to make sure they are treating the bacteria with the proper antibiotics and what other antibiotic could they give to narrow the meds down to just one...to make it easier for me to give to her at home. As long as everything stays on this course, Haylee could go home by Sunday or Monday.
I left feeling good about the conversation, I left and went to pickup Mason. I missed my sweet dude!! We went home so I could drop my stuff off and then unpack before taking Mason to dinner. On the way to dinner, my mom called and said the ID doctors came in and said they were going to change her antibiotics to something else and suggest to her doctors that the line come out. Needless to say, my heart dropped but I figured Saturday at the earliest and we would just relax tonight.
Mom called back about 15 mintues later to say they were going to pull the line out TONIGHT! Really?? What a way to spring it on someone. My poor mom was having to deal with all this and I was feeling really bad - for my mom, that I left, and for Haylee. The surgeon came in to talk to my mom and told her they could pull the line...in her room...with just a local. Um, ABSOLUTELY NOT!! My mom told the surgeon 'no' and she said he acted like that didn't matter. I told her to make sure that no one touched her without making sure she was on SOMETHING! Propofol, or something! They would have a bigger crisis on their hands if they just did a local...she would be screaming out of fear. Since I thought they were going to do it tonight, I called my friend, Meth, to see if she would stay with Mason so we could go down there. She was there in 20 minutes, but they decided to pull the line tomorrow morning so they could do it in the OR (and give her something. Thank you to my mom for making sure my baby was taken care of!!! And thank you to Meth, for dropping everything and being there for my sweet dude on a moments notice).
Haylee will have the line pulled Saturday morning. It will stay out for a few days and she will have an IV in her hand so she can still receive antibiotics and other medications until they are ready to replace the line with a new one.
Colleen came in and said that they determined what bacteria Haylee has - baccillus. She could've got it from anywhere because it's one of those bacterias thats just in the environment. As of that point (around 1pm) the culture taken on Feb. 23 has remained negative! A full 48 hours will determine for sure, but all the positive cultures have began growing within 12 hours from the time the cultures were taken. Colleen also said they were going to get the Infectious Disease doctors involved just to make sure they are treating the bacteria with the proper antibiotics and what other antibiotic could they give to narrow the meds down to just one...to make it easier for me to give to her at home. As long as everything stays on this course, Haylee could go home by Sunday or Monday.
I left feeling good about the conversation, I left and went to pickup Mason. I missed my sweet dude!! We went home so I could drop my stuff off and then unpack before taking Mason to dinner. On the way to dinner, my mom called and said the ID doctors came in and said they were going to change her antibiotics to something else and suggest to her doctors that the line come out. Needless to say, my heart dropped but I figured Saturday at the earliest and we would just relax tonight.
Mom called back about 15 mintues later to say they were going to pull the line out TONIGHT! Really?? What a way to spring it on someone. My poor mom was having to deal with all this and I was feeling really bad - for my mom, that I left, and for Haylee. The surgeon came in to talk to my mom and told her they could pull the line...in her room...with just a local. Um, ABSOLUTELY NOT!! My mom told the surgeon 'no' and she said he acted like that didn't matter. I told her to make sure that no one touched her without making sure she was on SOMETHING! Propofol, or something! They would have a bigger crisis on their hands if they just did a local...she would be screaming out of fear. Since I thought they were going to do it tonight, I called my friend, Meth, to see if she would stay with Mason so we could go down there. She was there in 20 minutes, but they decided to pull the line tomorrow morning so they could do it in the OR (and give her something. Thank you to my mom for making sure my baby was taken care of!!! And thank you to Meth, for dropping everything and being there for my sweet dude on a moments notice).
Haylee will have the line pulled Saturday morning. It will stay out for a few days and she will have an IV in her hand so she can still receive antibiotics and other medications until they are ready to replace the line with a new one.
February 23, 2012
2/23/12 - What a busy day!! And we met Cody Simpson!!!
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| Waiting for Cody Simpson inside The Voice radio station |
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| We both met Cody Simpson but she got a picture with him :) |
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| Q & A session - he's a very cool kid! |
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| It was such a pretty day today that we spent about an hour in the garden. |
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| Smelling the flowers and enjoying the sunshine :) |
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| Help us bust outta this place! Haha! The gate actually was unlocked...could've snuck right on to one of those Emory buses...! |
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| Chillin' in the garden, just me and Bug :) |
Adam came today and had lunch with us. He likes it and so do we :) We shopped around the gift shop to kill a few minutes before going to The Voice to wait for Cody Simpson. He showed up a little after 1pm and did a Q & A session with the director of The Voice as well as answered a few questions from fans. He's a cool, laid back kid. He just turned 15 last month...yes, he's a kid and he's also Australian. The accent was awesome! After the interview, he signed autographs and took pictures. Haylee has a Polaroid picture as well as the picture posted above and a personally autographed picture from him. She was sooo excited!!
We had a 2pm curfew (haha) for a quick antibiotic then she was unhooked for almost 3 hours. We played in the playroom for a while (well, she did...I read a book!) then went down to the garden to enjoy the weather. It was so nice outside! She kept wanting to run and skip so I finally gave in to the skipping but not the running. She wasn't wearing shoes, just thick socks so running wasn't allowed in my eyes! I got a phone call from the clinic floor and it was Maggie!! She said she was looking out the window and saw Haylee outside running around and said, "She doesn't look like a girl who is supposed to be sick!" We looked up at the windows to see Maggie waving at us. To know that she took time out of her day to call me because she saw Haylee outside playing and to check on her, makes me adore Maggie even more. WE LOVE MAGGIE!!!
Colleen, one of the nurse practitioners, came by for our daily check up around 5pm. She joked with us about how she thought she was going to have to send out a search party for us because we were never in the room when she came by. She also said she would rather see her acting like she has been and super busy because she was so sick last time she was here :( Her cultures came back positive again from yesterday. She started antibiotics after the 2nd culture was drawn so I'm not surprised. The cultures from today haven't come back yet. She's had a good 36 hours on 4 different antibiotics so I'm hopeful they will be negative. She hasn't had anymore fever and she's acting and feeling fine. Colleen said they would send her home on home medicines when she has 2 negative cultures. She could go home as early as Saturday or Sunday!! If today's cultures come back positive, she will have to have her line replaced.......not a good time. I just asked our night nurse if she has heard about today's cultures and she said no and that they usually sooner call if the cultures are positive. So far, so good!
We went to BINGO tonight and she won 3 prizes. She even picked out a prize for Mason!! It's a Matchbox car but still...she thought of him. No matter what she says, she loves him!! She also got a denim backpack she can decorate (which she is doing now) and the "Gnomeo and Juliet" dvd. We had dinner, she had a bath, and now we're just relaxing. It's been a busy day but it's helped to pass the time.
February 22, 2012
2/22/12 - An unexpected re-admission
We all got up this morning and got ready for a normal day at infusion. We dropped by Haylee's school, picked up the books she left and went to drop Mason off at school. We went in the center, said our goodbyes to Mason, and got back in the car.
As we were getting in, my phone was ringing and it was from Aflac Outpatient Clinic...I figured this couldn't be good. The nurse on the phone asked if the ER department had been in touch with us. When I said no, she informed me that at least 1 of Haylee's blood cultures came back positive for bacteria and that we should pack a bag since they would probably admit us to the hospital. I let them know that we were about to head that way and to please let Maggie know we would be late since we needed to go home and get some things together.
We arrived in clinic around 11:15. Maggie pulled up the results and it turns out, she has bacteria in BOTH lines. They went ahead and started her on 2 antibiotics to go ahead and start killing the bugs in her lines. One of the doctors came by and let us know they would have word from pathology in a few days the specific type of bacteria it is and what meds they need to give her to kill it. They decided she would need to stay for sure and moved us to a room around 3pm. She will have to have 3 negative cultures in a row to be able to go home. That won't happen for at least a few days - my guess is Sunday would be the earliest. Her counts are good (normal WBC and ANC), she's acting fine, and she hasn't had a fever since last night. I could be surprised.
Haylee developed more of a sensitivity to the Vancomycin today. They had given her 40mg Benadryl and 325mg Tylenol as part of the pre-med necessary for her to take it last time (which knocks her out cold and makes her ill as a hornet when she wakes up. I told her to be mad all she wants and she'll get glad in the same pair of shoes!). Maggie was told to run the Vanc thru 1 line for an hour and the other line for the last hour. She was almost done with the first hour and said her head started 'stinging' so Maggie paused it and had a doctor check her out. They decided to finish the first hour and slow down the Vanc even more for the last hour. When it was almost done, her feet started itching real bad so they stopped it altogether. They are consulting with Pharmacy to see what they can give her instead. They found a different combination of antibiotics they are going to try. Its the same kind of coverage, but works for kids with a Vancomycin sensitivity. She shouldn't have to be pre-med either...Whoo Hoo!!
Per orders, she's been hooked up to IV fluids. She's gonna be up all night having to go potty and she'll probably stop drinking since she's getting it from that big bag!
I wish I was more like Haylee in the way she handles this. When I told her she would have to be re-admitted today, she was like "ugh, ok then" and that was it. I, on the other hand, was crying most of the car ride down and almost the entire 3 1/2 hours we were in clinic. I keep trying to figure out what could've happened and where she could've got the bacteria from. I hate for her to have to be back in but I know its what she has to do. Apparently, she's come to terms with it more than me. She was chugging along so good and now that she's started up this 2nd arsenic phase, it's been something. Maybe that's my problem. Like my dad says, it's just one of those bumps in the road. Doesn't mean I have to like it or be OK with it. It's just something we have to do.
As we were getting in, my phone was ringing and it was from Aflac Outpatient Clinic...I figured this couldn't be good. The nurse on the phone asked if the ER department had been in touch with us. When I said no, she informed me that at least 1 of Haylee's blood cultures came back positive for bacteria and that we should pack a bag since they would probably admit us to the hospital. I let them know that we were about to head that way and to please let Maggie know we would be late since we needed to go home and get some things together.
We arrived in clinic around 11:15. Maggie pulled up the results and it turns out, she has bacteria in BOTH lines. They went ahead and started her on 2 antibiotics to go ahead and start killing the bugs in her lines. One of the doctors came by and let us know they would have word from pathology in a few days the specific type of bacteria it is and what meds they need to give her to kill it. They decided she would need to stay for sure and moved us to a room around 3pm. She will have to have 3 negative cultures in a row to be able to go home. That won't happen for at least a few days - my guess is Sunday would be the earliest. Her counts are good (normal WBC and ANC), she's acting fine, and she hasn't had a fever since last night. I could be surprised.
Haylee developed more of a sensitivity to the Vancomycin today. They had given her 40mg Benadryl and 325mg Tylenol as part of the pre-med necessary for her to take it last time (which knocks her out cold and makes her ill as a hornet when she wakes up. I told her to be mad all she wants and she'll get glad in the same pair of shoes!). Maggie was told to run the Vanc thru 1 line for an hour and the other line for the last hour. She was almost done with the first hour and said her head started 'stinging' so Maggie paused it and had a doctor check her out. They decided to finish the first hour and slow down the Vanc even more for the last hour. When it was almost done, her feet started itching real bad so they stopped it altogether. They are consulting with Pharmacy to see what they can give her instead. They found a different combination of antibiotics they are going to try. Its the same kind of coverage, but works for kids with a Vancomycin sensitivity. She shouldn't have to be pre-med either...Whoo Hoo!!
Per orders, she's been hooked up to IV fluids. She's gonna be up all night having to go potty and she'll probably stop drinking since she's getting it from that big bag!
I wish I was more like Haylee in the way she handles this. When I told her she would have to be re-admitted today, she was like "ugh, ok then" and that was it. I, on the other hand, was crying most of the car ride down and almost the entire 3 1/2 hours we were in clinic. I keep trying to figure out what could've happened and where she could've got the bacteria from. I hate for her to have to be back in but I know its what she has to do. Apparently, she's come to terms with it more than me. She was chugging along so good and now that she's started up this 2nd arsenic phase, it's been something. Maybe that's my problem. Like my dad says, it's just one of those bumps in the road. Doesn't mean I have to like it or be OK with it. It's just something we have to do.
2/21/12 - A late night ER visit
My mom took Haylee down for infusion today. I sent her with a little note for Maggie and Tracey. Maggie loved it! Haha! She got all of her school work she could do (she didn't have her Math book with her). That's all she has left for the rest of the week! Mom said she was everywhere and then complained of a headache just before they left. Maggie went to give her some Tylenol, but Haylee refused. Maggie mentioned to the doctors that she was on her 2nd day of headache and they said they would discuss it in their rounds tomorrow and get with me tomorrow about what they discussed.
Mom and Haylee went to Steak n Shake afterwards and she seemed to be fine. Mom dropped her off with me at daycare and she played with the School-agers all afternoon since I had to close at work. Around 5:30, she came up front complaining that her legs were hurting. I had her sit down and relax since they had been outside all afternoon. I figured they were sore from playing or something like that.
When we got home, she had some dinner then went in her room and went to sleep. I figured because of that something was wrong. I took her temperature and it was 101.3. I went ahead and put her in the bathtub since I figured that we would be making a trip down to the ER. After her bath, I took her temperature again (101.6) and called the clinic after-hours line and the doctor said to go ahead and bring her down for blood cultures and a CBC.
We headed down and took our thermometer with us. Every so often, I took her temperature and it was going down on its own (I'm not allowed to give her any medications for fever without the doctor giving permission). It went from 101.6 when we left our house to 100 when we pulled in the ER parking lot 45 minutes later.
The ER was packed!!! Since she's a Hem/Oc patient and she had a fever, we were shuffled back rather quickly. The nurse came in and drew her cultures and CBC labs, got her vitals, and then we waited...and waited. Finally after about 1 1/2 hours, her counts came back looking good and her fever was down to a normal 98.6. Since she was acting fine and they couldn't find a source of infection, they sent her home and said they would call me if the cultures grew back positive. We walked through our door at 1am this morning :(
Mom and Haylee went to Steak n Shake afterwards and she seemed to be fine. Mom dropped her off with me at daycare and she played with the School-agers all afternoon since I had to close at work. Around 5:30, she came up front complaining that her legs were hurting. I had her sit down and relax since they had been outside all afternoon. I figured they were sore from playing or something like that.
When we got home, she had some dinner then went in her room and went to sleep. I figured because of that something was wrong. I took her temperature and it was 101.3. I went ahead and put her in the bathtub since I figured that we would be making a trip down to the ER. After her bath, I took her temperature again (101.6) and called the clinic after-hours line and the doctor said to go ahead and bring her down for blood cultures and a CBC.
We headed down and took our thermometer with us. Every so often, I took her temperature and it was going down on its own (I'm not allowed to give her any medications for fever without the doctor giving permission). It went from 101.6 when we left our house to 100 when we pulled in the ER parking lot 45 minutes later.
The ER was packed!!! Since she's a Hem/Oc patient and she had a fever, we were shuffled back rather quickly. The nurse came in and drew her cultures and CBC labs, got her vitals, and then we waited...and waited. Finally after about 1 1/2 hours, her counts came back looking good and her fever was down to a normal 98.6. Since she was acting fine and they couldn't find a source of infection, they sent her home and said they would call me if the cultures grew back positive. We walked through our door at 1am this morning :(
February 20, 2012
2/20/12 - Back to the arsenic grind!
We started back to our daily commute for arsenic treatments today. My mom came with us so she could see where to go and what to do since she will be taking Haylee down for me a few times a week. The EKG and Echo went well - they were able to get us in early and I was grateful for that since we didn't start infusion until 2:45pm (our appointment with Dr. Keller wasn't until 1:30. The early arrival in Cardiac was helpful!!). Her labs came back looking great and infusion went well. Haylee was extra mouthy today - she didn't wanna do her schoolwork but she did it, huffing and puffing. I told my mom to watch out for her because she would try and talk her way out of schoolwork.
Dr. Keller saw us today and told us that she would get close to a 3 week break between Consolidation 1 and 2. That was exciting to hear! Once she's done on March 23, she has to wait 7 days before she gets a bone marrow aspiration and then another 7 days to be re-admitted. It's looking to be around April 10. I asked again about the possible outpatient during Consolidation 3 and he said they have done it in the past but most kids get really sick and have to be re-admitted during that time. He said they would discuss it amongst themselves when that time comes on what they will do. They did drop her ATRA dosage about 30%. Her normal daily dosage is 30mg and now its 20mg. All they did was drop the nightly dosage from 2 pills to 1 pill. Dr. Keller said they don't want her to develop the pseudotumorcelebri again so they will try this and see how she does.
Haylee came home and developed a headache tonight. I gave her some Tylenol and she seems to be doing OK. I'll have my mom mention it to Maggie tomorrow to mention to whoever is on-call in clinic tomorrow. Maybe it's just a headache. I don't wanna take chances though.
WBC - 7960
Platelets - 415,000
HBG - 13.9
ANC - 3150
Dr. Keller saw us today and told us that she would get close to a 3 week break between Consolidation 1 and 2. That was exciting to hear! Once she's done on March 23, she has to wait 7 days before she gets a bone marrow aspiration and then another 7 days to be re-admitted. It's looking to be around April 10. I asked again about the possible outpatient during Consolidation 3 and he said they have done it in the past but most kids get really sick and have to be re-admitted during that time. He said they would discuss it amongst themselves when that time comes on what they will do. They did drop her ATRA dosage about 30%. Her normal daily dosage is 30mg and now its 20mg. All they did was drop the nightly dosage from 2 pills to 1 pill. Dr. Keller said they don't want her to develop the pseudotumorcelebri again so they will try this and see how she does.
Haylee came home and developed a headache tonight. I gave her some Tylenol and she seems to be doing OK. I'll have my mom mention it to Maggie tomorrow to mention to whoever is on-call in clinic tomorrow. Maybe it's just a headache. I don't wanna take chances though.
WBC - 7960
Platelets - 415,000
HBG - 13.9
ANC - 3150
February 19, 2012
2/17/12 - A funny and cute thing happened to Haylee
A funny (but cute) thing happened to Haylee at daycare on Friday: All the school-agers were out of school Friday for Presidents Day weekend. A girl named Kendall goes there and her and Haylee are buddies. They were super excited to see each other Friday morning when Kendall arrived. The school-agers were in the back PreK room playing and having fun. In the middle of this room is a loft (a bunk bed with the bottom bunk taken out, top still there), which is also the focal point of the room. Haylee, Kendall, and a few other kids were on top of the loft playing their DS games and hanging out. Another school girl had just arrived and saw Haylee with all of her shaved head glory and stood there and stared for a minute. Haylee wasn't paying attention to this girl (and let's face it, she wouldn't care anyway). Kendall saw her and yelled at her, "YEA SHE'S GOT CANCER...YOU GOT A PROBLEM WITH IT??" Haylee looked up at that point, saw the girl, and looked back down at what she was doing while Kendall stared her down for a minute. It was so funny but yet so cute because Kendall was protecting her!!
2/18-2/19/12 - A laid back, rainy weekend
We didn't really do a lot this weekend. On Saturday, we did a little shopping for me, got Mason his free doughnut from Valentines Day, and Haylee spent her birthday money from Nonna and PawPaw. We lounged around the house all day on Sunday before going over to Nonna and PawPaw's for dinner.
Haylee starts back to clinic on Monday afternoon. My mom is going with us to see how everything works because she's going to start taking Haylee a few days a week to help me out so I can work a little. I'll go with her every Monday since that's the day she sees the doctor and gets her EKG. Depending on the rest of her schedule and her H/H services, will depend on how many days a week we each take her.
Have a good rest of your weekend!
Haylee starts back to clinic on Monday afternoon. My mom is going with us to see how everything works because she's going to start taking Haylee a few days a week to help me out so I can work a little. I'll go with her every Monday since that's the day she sees the doctor and gets her EKG. Depending on the rest of her schedule and her H/H services, will depend on how many days a week we each take her.
Have a good rest of your weekend!
February 18, 2012
2/14-2/17/12 - A week of school is done
I haven't blogged in a while and that's because Haylee's days have been the same everyday. On Valentines Day, there was a party at her school where they had cupcakes and candy and did their Valentine exchange. She came home all jacked up from sweets! Wednesday and Thursday she had good days. She never said any different and I didn't get a phone call or a note home, so it was just good (haha)!
Her last day was Thursday since the school was closed Friday and Monday for President's Day. I don't see her going back to school for the rest of the school year unless she has a chance in between treatments. She knows that and is ok with it.
Friday, Haylee came to work with me. Gwinnett county was out of school too, so the schoolage kids were there. She loves going to daycare and seeing her friends there. She was upset when I told her we weren't going on Monday, but she'll get another chance. They all went on a field trip to see "Journey 2". She said she liked it but it was a little scary. We came home, she played with Savannah from next door, and the rest of the night was uneventful.
Have a great weekend!
Her last day was Thursday since the school was closed Friday and Monday for President's Day. I don't see her going back to school for the rest of the school year unless she has a chance in between treatments. She knows that and is ok with it.
Friday, Haylee came to work with me. Gwinnett county was out of school too, so the schoolage kids were there. She loves going to daycare and seeing her friends there. She was upset when I told her we weren't going on Monday, but she'll get another chance. They all went on a field trip to see "Journey 2". She said she liked it but it was a little scary. We came home, she played with Savannah from next door, and the rest of the night was uneventful.
Have a great weekend!
February 14, 2012
2/13/12 - Monday Funday
Haylee took in cupcakes to her class at school to celebrate her birthday. They were chocolate and vanilla with blue icing. I'm sure some of those kids went home with blue stained teeth! She had another good day and got caught up on all her schoolwork (she was behind just a bit).
The school nurse called me today to tell me that she had bumped her head on a box that was sticking out from the wall (I guess one of those teacher boxes?). You can imagine that when she told me who she was and that Haylee was in the clinic, my heart sank! I talked to her though and she seemed to be just fine.
The school nurse called me today to tell me that she had bumped her head on a box that was sticking out from the wall (I guess one of those teacher boxes?). You can imagine that when she told me who she was and that Haylee was in the clinic, my heart sank! I talked to her though and she seemed to be just fine.
February 12, 2012
2/12/12 - Haylee's Birthday
Durena and Jerry played games and gave their tickets to Haylee and Mason to spend. Haylee and Taylor would take off by themselves and everytime they came back to us, they each had a handful of tickets. I guess they know how to play those games better than we do! Mason was so overwhelmed but he had a great time! Haylee ended up with 975 tickets and Mason got 176. He didn't know the difference and spent his tickets on one of those sticky hand things and a Chinese Yo-Yo. He was in heaven :) Haylee got a Littlest Pet Shop stuffed animal (go figure!) and a Chuck E. Cheese goody bag with a bunch of junk and candy in it. They both got what they wanted and had fun doing it! Taylor saved hers for a rainy day - smart girl!
Haylee had a great 9th birthday - she spent it with friends and family, got everything she wanted, and has been feeling wonderful! Happy Birthday Haylee Kate!! We love you :)
HAPPY BIRTHDAY TO MY BEAUTIFUL HAYLEE KATE!!!
My baby girl is 9 years old today! I can't believe 9 years have past (with what she's dealt with, she seems older, but is still very much 9 years old). I have the best little girl EVER! She is an amazing girl and continues to amaze me everyday with her strength and willpower to continue fighting and going about life like she does. She makes me strong, just to know what she's been through, what she's currently dealing with, and what's left to come. She will hit it head on and overcome it all. That's my girl :)
We love you Haylee Kate!!! Happy 9th Birthday with MANY, MANY more to come!
2/11/12 - The eve of Haylee's birthday
Haylee slept in today until almost 9:30 which is good for her. She woke up feeling good, too! We didn't really do alot today except run a few errands. We met my parents at Luigi's for dinner because that's where Haylee wanted to go for her birthday dinner. She was in pizza heaven! When we got home, Adam surprised her with a present he bought for her that she has been wanting....the Skylander Wii game bundle. She was so excited and we didn't see her for a while!
February 11, 2012
2/10/12 - A great start to the weekend
No school or work for Haylee and I today. She had a clinic appointment at 10am as part of the study. She had an EKG and a count check to make sure everything is still going great. We got through registration quickly (the check-in receptionist knows us by name so she checked us in fast). The EKG took a total of 20 mins, including wait time. We had to wait upstairs for our clinic appointment for 2 hours because we were an hour early for the appointment. Haylee had her labs drawn and about 10 minutes later, Stacy came in to check her out. Her counts were fabulous but her EKG results had not came back yet. Stacy said she would send us home and call if something was wrong, but that no news is good news. She also said if something had looked wrong that she would have already heard about it.
We got back to town and shopped a little - Haylee's birthday is this weekend so we did some birthday shopping! We had a great rest of the night :)
I misplaced my paper that showed the the exact counts but I remember an estimate of each:
WBC - 8800
Platelets - 475,000
HBG - 11
ANC - 3000
We got back to town and shopped a little - Haylee's birthday is this weekend so we did some birthday shopping! We had a great rest of the night :)
I misplaced my paper that showed the the exact counts but I remember an estimate of each:
WBC - 8800
Platelets - 475,000
HBG - 11
ANC - 3000
February 8, 2012
2/8/12 - Happy Hump Day!
Haylee had another good day at school! The shirt she had on today showed the tape at the top of her line dressing and she said a few kids asked what that was. She told them and they just said "Oh." No other questions. She said everyone is always saying "hi" to her...all the time. She said it's kind of weird to her but it doesn't bother her. I explained that everyone is just glad to have her back at school and are getting their 'hi's' in while they can. She has one more day of school this week and then a clinic appointment Friday. Her birthday is this weekend and she's super excited :)
I had a quiet day at work but kept a headache all day. I don't know what it was, possibly some smelly antibacterial gel. I came home and fought off a migraine. It just stayed at a pounding headache level.
My mom had surgery on Monday to repair a torn rotator cuff in her shoulder. She went to the ER this evening, not feeling well. Her and my dad are waiting on the x-ray and CT scan results to see what the problem is. Please keep her in your thoughts and prayers :)
I had a quiet day at work but kept a headache all day. I don't know what it was, possibly some smelly antibacterial gel. I came home and fought off a migraine. It just stayed at a pounding headache level.
My mom had surgery on Monday to repair a torn rotator cuff in her shoulder. She went to the ER this evening, not feeling well. Her and my dad are waiting on the x-ray and CT scan results to see what the problem is. Please keep her in your thoughts and prayers :)
February 7, 2012
2/7/12 - News from the Optic Nerve Specialist
Haylee had her appointment with the optic nerve specialist today (special thanks to Kim for enduring it with us!!). It was a very long 4 hours but we got GOOD news in the end. The optic nerve swelling has gone down since the appointment on January 25. After yet another exam and research from the other specialists, their final findings were that yes, the ATRA is causing the swelling and increased pressure in the back of her eyes and head. Dr. Biousse said that she wasn't too concerned about the swelling (she said it was subtle) because she's sure that since the ATRA is the problem, it will go away. She is scheduled to start taking it again on February 20 so the swelling will probably come back but decrease again once she stops taking it after the 14 day cycle. Haylee isn't having trouble seeing because of it (her needing glasses is just a coincidence). Dr. Biousse said since the ATRA is crucial for her treatment and she needs it, she should continue taking it as prescribed and continue to follow the protocol written for it and that she will continue to monitor her eyes during her treatment. The doctor doesn't feel like the amount prescribed is doing any damage to her eyes, she's not complaining of headaches, and she's feeling good.
There was mention that upon doing some research, the leukemia or a brain tumor could be the cause. Since she's had 2 clean MRI's (nothing showed up at all, let alone a tumor or leukemia) and 2 clean LP's (the CSF fluid came back with no leukemia cells), those are NOT LIKELY the cause. She made me feel very confident neither one were a consideration but to keep in mind the leukemia could show in CSF fluid at any time. If it hasn't by now, it probably wouldn't. Dr. Biousse made the suggestion that everytime she gets an LP, the fluid should be sent off for testing just to be sure it comes back clean everytime. When Haylee starts Consolidation 2 at the end of March, she will be getting an injection of chemo in her spinal fluid as part of her treatment with this type of leukemia. Even if she shows a few cells in her CSF fluid later on, it won't be for long!!!!
All in all, I was very pleased with the results of the appointment and was glad we got answers today!! The ATRA is the problem, nothing needs to be changed, her eyes will still be monitored, and she's good to go to continue treatment as planned!!!
On another note, we had to drop off some Sprite at Haylee's school this afternoon so it would quit rolling around in my trunk and driving me crazy! We walked into her classroom and the greeting she received from her friends was music to my ears. Her classmates kept saying "Hi Haylee" and "Hey Haylee" and "Will you be back tomorrow?". They were waving and smiling at her. It was so sweet! The ladies in the front office were equally warming :)
There was mention that upon doing some research, the leukemia or a brain tumor could be the cause. Since she's had 2 clean MRI's (nothing showed up at all, let alone a tumor or leukemia) and 2 clean LP's (the CSF fluid came back with no leukemia cells), those are NOT LIKELY the cause. She made me feel very confident neither one were a consideration but to keep in mind the leukemia could show in CSF fluid at any time. If it hasn't by now, it probably wouldn't. Dr. Biousse made the suggestion that everytime she gets an LP, the fluid should be sent off for testing just to be sure it comes back clean everytime. When Haylee starts Consolidation 2 at the end of March, she will be getting an injection of chemo in her spinal fluid as part of her treatment with this type of leukemia. Even if she shows a few cells in her CSF fluid later on, it won't be for long!!!!
All in all, I was very pleased with the results of the appointment and was glad we got answers today!! The ATRA is the problem, nothing needs to be changed, her eyes will still be monitored, and she's good to go to continue treatment as planned!!!
On another note, we had to drop off some Sprite at Haylee's school this afternoon so it would quit rolling around in my trunk and driving me crazy! We walked into her classroom and the greeting she received from her friends was music to my ears. Her classmates kept saying "Hi Haylee" and "Hey Haylee" and "Will you be back tomorrow?". They were waving and smiling at her. It was so sweet! The ladies in the front office were equally warming :)
February 6, 2012
2/6/12 - Her first day back to school!!
Haylee was able to go back to school today!! She was so excited she was up at 5am this morning and was ready to go (dressed with shoes on, teeth brushed, breakfast ate, and bookbag packed) by 6am. No one else was out of bed yet!!! I dropped her off at school and went to work myself.
My first day back was a pleasant one. I was welcomed back by the staff, parents, and the kids! It was like riding a bike, like I never left. I wasn't able to worry about Haylee too much. I made sure to stay busy. By the time 2pm came around, I was ready to go get her!
She got in the car and said her day back was good! She wore a hat to school but wasn't wearing it when she came out at the end of the day. She said no one said anything to her about her hair and everyone was glad to see her. Even some of the different teachers came by to see her! She did mention that she thought there were a few girls that were pointing at her hair while they were waiting during afternoon carpool. I told her that it was okay to ask people if they had a problem with her hair but not to be mean about it. She doesn't understand that kids can be cruel and most kids that would make fun aren't sure what to do or say because they don't understand what she's going through. She didn't seem too upset by it and I love that about her :) She's been feeling good today and hasn't had any issues with her line site itching.
She has her appointment with the optic nerve specialist in the morning. Hopefully, we will get some answers about the pseudotumorcelebri (what a mouth full!), if the swelling has gone down, and what this means regarding the ATRA.
My first day back was a pleasant one. I was welcomed back by the staff, parents, and the kids! It was like riding a bike, like I never left. I wasn't able to worry about Haylee too much. I made sure to stay busy. By the time 2pm came around, I was ready to go get her!
She got in the car and said her day back was good! She wore a hat to school but wasn't wearing it when she came out at the end of the day. She said no one said anything to her about her hair and everyone was glad to see her. Even some of the different teachers came by to see her! She did mention that she thought there were a few girls that were pointing at her hair while they were waiting during afternoon carpool. I told her that it was okay to ask people if they had a problem with her hair but not to be mean about it. She doesn't understand that kids can be cruel and most kids that would make fun aren't sure what to do or say because they don't understand what she's going through. She didn't seem too upset by it and I love that about her :) She's been feeling good today and hasn't had any issues with her line site itching.
She has her appointment with the optic nerve specialist in the morning. Hopefully, we will get some answers about the pseudotumorcelebri (what a mouth full!), if the swelling has gone down, and what this means regarding the ATRA.
February 5, 2012
2/4-2/5/12 - What a weekend...
For those who aren't aware of the what the CVL line (central line) that's in her chest is, let me explain. When she was diagnosed, they surgically implanted a CVL line, or a central line, in her chest like the diagram below:
The line goes into her body and through one of the veins near her heart. The connections at the end, or the line caps as I call them, connected to the line allow easier access and a non painful way for blood draws, to receive chemo treatments,antibiotics, and other medications, and to receive blood products when needed. Where the CVL enters/exits her body, she has a dressing to cover the site to minimize the chance of infection. It consists of a Biopatch directly covering the entrance/exit site then a bigger transparent covering over that, protecting everything. The Biopatch has antibiotics in itself and is good for 7 days, making the change process occur less often, as it is uncomfortable and can be painful from time to time since the skin underneath can be irritated sometimes.
The wee hours of Saturday morning some of the roughest we've had since diagnosis. Haylee was beside herself crying because the central line dressing was itching so bad. When the irritation got bad before, we eliminated the Tegaderm dressing cover and it seems to be doing better. I had to change the dressing 3 days early because she had been itching and messing with it that the dressing was coming off and the Biopatch started slipping under the dressing. She was screaming and crying and was getting no relief from anything that had worked before. I stayed up with her in her room where we finally passed out from exhaustion at 2:30am only to wake back up at 3:15am and start all over again. She finally passed out for good about 3:45am and slept until about 9am. I took her down to Egleston to get it checked out and to see what they could and what we could do differently from here on out.
We elminated the Chloraprep cleaning solution and changed it to Betadine instead and covered the dressing with gauze as well as a different transparent dressing to see if that helps. She was literally screaming and crying in the ER because it was itching so bad. She ended up making herself go into an anxiety attack, I guess you would say. She started getting flushed and almost breaking out in hives on her arms and legs. They gave her prescription Benadryl through her central line to calm her down and help with the itching and hives. After about 15 minutes, she was fine and the itching was at a minimum. We left there with a new way to change her dressing and a prescription antihistimine to use instead of OTC stuff. Dr. Abdella happened to be the oncologist on-call and spoke with the ER doctor about Haylee. She told them she would put in a call to the dermatology department to see what else can be done. Haylee ended up falling asleep in the car on our way home - probably a cross between lack of sleep and that good Benadryl! She ended up sleeping until abou 9am Sunday morning, which is sleeping in for her. Her line site has been doing good since Saturday afternoon.
Haylee goes back to school on Monday and she is so excited!!!! I'm going back to work as well, but only during the time she's in school. Have a great SuperBowl Sunday!!
The wee hours of Saturday morning some of the roughest we've had since diagnosis. Haylee was beside herself crying because the central line dressing was itching so bad. When the irritation got bad before, we eliminated the Tegaderm dressing cover and it seems to be doing better. I had to change the dressing 3 days early because she had been itching and messing with it that the dressing was coming off and the Biopatch started slipping under the dressing. She was screaming and crying and was getting no relief from anything that had worked before. I stayed up with her in her room where we finally passed out from exhaustion at 2:30am only to wake back up at 3:15am and start all over again. She finally passed out for good about 3:45am and slept until about 9am. I took her down to Egleston to get it checked out and to see what they could and what we could do differently from here on out.
We elminated the Chloraprep cleaning solution and changed it to Betadine instead and covered the dressing with gauze as well as a different transparent dressing to see if that helps. She was literally screaming and crying in the ER because it was itching so bad. She ended up making herself go into an anxiety attack, I guess you would say. She started getting flushed and almost breaking out in hives on her arms and legs. They gave her prescription Benadryl through her central line to calm her down and help with the itching and hives. After about 15 minutes, she was fine and the itching was at a minimum. We left there with a new way to change her dressing and a prescription antihistimine to use instead of OTC stuff. Dr. Abdella happened to be the oncologist on-call and spoke with the ER doctor about Haylee. She told them she would put in a call to the dermatology department to see what else can be done. Haylee ended up falling asleep in the car on our way home - probably a cross between lack of sleep and that good Benadryl! She ended up sleeping until abou 9am Sunday morning, which is sleeping in for her. Her line site has been doing good since Saturday afternoon.
Haylee goes back to school on Monday and she is so excited!!!! I'm going back to work as well, but only during the time she's in school. Have a great SuperBowl Sunday!!
2/3/12 - No arsenic treatments for 2 weeks!!!
WHOO HOO!! Our last day of arsenic treatment for 2 weeks went great! Haylee made another friend at clinic - a little girl named Kayson, who is 5 and has ALL leukemia. She's super sweet! The girls rode big wheels around the clinic for a good 30 minutes. Haylee also taught Kayson to bowl on the Wii. The clowns were back on Friday and Haylee and Kayson were giving them a hard time! They enjoyed the visit from them. She didn't have any school work to do on Friday at clinic since her homebound teacher came in the morning and finished it up with her. She was so excited because she got to play instead of do work!
Haylee's optic nerve specialist appointment is Tuesday. As part of the clinical study she's involved in, she has an EKG and clinic visit on Friday with Stacy. She starts back on February 20th.
Haylee's optic nerve specialist appointment is Tuesday. As part of the clinical study she's involved in, she has an EKG and clinic visit on Friday with Stacy. She starts back on February 20th.
February 2, 2012
2/2/12 - Her LP was today
Clinic on Wednesday went well. Maggie called us in early so we didn't have to wait until 3pm to drive downtown. We were in and out with no problems :)
Today, Haylee had her LP scheduled at 10:30. She couldn't eat anything after 4:30am and no liquids after 8:30am. When we were on our way down, we passed Burger King and you could smell the food. She kept saying how good the food smelled and couldn't wait to eat some goldfish in the clinic!! The good thing about having procedures done is that they have 3 procedure rooms in the clinic and are able to perform LPs, bone marrow aspirations, and lots of other things on the same floor with familiar people. She was a little scared this time around but settled in quickly after a little pep talk with Lindsay, one of the Child Life Specialists. Stacy, Lauren (a nurse she's had before), and Lily (her last sedation specialist) we with her for the LP. When they started the Propofol, she started to cry (later, Lindsay and I found out she doesn't like it because it makes her head feel funny and kind of hurts a little). She didn't cry for long - she was out like a light after about 10 seconds.
I stepped out of the room and went to the PICU waiting room to get her a bag of chips and me a Coke. When I got back to the Family Consult room directly across the hall from her procedure room and sat for about 5 minutes, Stacy poked her head out and said she was all done and already waking up. When I walked in, I sat next to her and she kept wanting to get up and Lauren and I kept holding her down (gently!) and she was getting mad. She started crying and when I asked her what was wrong she said, "you won't let me get up." Then she was saying she couldn't see so I offered to give her her glasses back. When she put them on she said, "everything's still blurry!" I told her that was still the effects of the Propofol and it would be done in 15 minutes or so. She had to stay laying down for 30 minutes to avoid a headache.
Maggie came in and went ahead an hooked her up early since the chemo was ready and she was doing fine. Once she was released from the LP, we walked over to the infusion side to finish out her treatment. There was 30 minutes left for school so she went with Jami and got a little done. She had some lunch, watched some TV, and played with Lindsay until we were done.
Haylee met a girl today named Anna who has the same 'well loved' cow as she does (and hers is well loved, too). Anna's cow is named "Vaca" (spanish for Cow) and Haylee's is "Cowie" (original, right??) Anna loves cows so much she has a cow ring, backpack, hat, and her fingernails are done with cow spots. So sweet :)
Stacy said there was slight pressure from the LP - a 29. We should know more in the next week or so.
Today, Haylee had her LP scheduled at 10:30. She couldn't eat anything after 4:30am and no liquids after 8:30am. When we were on our way down, we passed Burger King and you could smell the food. She kept saying how good the food smelled and couldn't wait to eat some goldfish in the clinic!! The good thing about having procedures done is that they have 3 procedure rooms in the clinic and are able to perform LPs, bone marrow aspirations, and lots of other things on the same floor with familiar people. She was a little scared this time around but settled in quickly after a little pep talk with Lindsay, one of the Child Life Specialists. Stacy, Lauren (a nurse she's had before), and Lily (her last sedation specialist) we with her for the LP. When they started the Propofol, she started to cry (later, Lindsay and I found out she doesn't like it because it makes her head feel funny and kind of hurts a little). She didn't cry for long - she was out like a light after about 10 seconds.
I stepped out of the room and went to the PICU waiting room to get her a bag of chips and me a Coke. When I got back to the Family Consult room directly across the hall from her procedure room and sat for about 5 minutes, Stacy poked her head out and said she was all done and already waking up. When I walked in, I sat next to her and she kept wanting to get up and Lauren and I kept holding her down (gently!) and she was getting mad. She started crying and when I asked her what was wrong she said, "you won't let me get up." Then she was saying she couldn't see so I offered to give her her glasses back. When she put them on she said, "everything's still blurry!" I told her that was still the effects of the Propofol and it would be done in 15 minutes or so. She had to stay laying down for 30 minutes to avoid a headache.
Maggie came in and went ahead an hooked her up early since the chemo was ready and she was doing fine. Once she was released from the LP, we walked over to the infusion side to finish out her treatment. There was 30 minutes left for school so she went with Jami and got a little done. She had some lunch, watched some TV, and played with Lindsay until we were done.
Haylee met a girl today named Anna who has the same 'well loved' cow as she does (and hers is well loved, too). Anna's cow is named "Vaca" (spanish for Cow) and Haylee's is "Cowie" (original, right??) Anna loves cows so much she has a cow ring, backpack, hat, and her fingernails are done with cow spots. So sweet :)
Stacy said there was slight pressure from the LP - a 29. We should know more in the next week or so.
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