Our day started at 430am. (Well technically, I had been up at least twice with William since midnight, but I digress...). I manage to sneak out of bed without waking William, and Mike and I both get ready in less than half an hour. We then go get Natalie up and she is surprisingly cheerful and doesn't mention breakfast. William wakes up right then and I just make it into the room before he crawls off the end of the bed. We get both kids ready and out the door in about 20 minutes and we leave on time to make the hour drive to the hospital.
Once there, we get lost inside the hospital since we see no signs for pediatrics or Barbara Bush Medical Center. We ask for directions twice, and make it to our location about ten minutes late. Turns out we were supposed to go to admitting, so we send Mike off to do that and I head with Natalie and William down the hall. We meet up with a nurse who brings us through a different admitting process including blood pressure and temperature. Natalie is afraid of this room since it has so many machines and medical equipment. She cheers up some when she gets some Lion King stickers. We stay in this room for the duration of the procedure, including her sedation.
Mike returns and soon the doctors arrive. We have seen about three nurses by this point, and there is also a medical student. Other nurses come and go to get supplies from this room. William crawls around on the floor for a while, but when things get serious Mike holds him. While we wait for everyone to arrive and the correct medicines to arrive from the pharmacy, Natalie looks over the stickers in her sticker book, and she plays with a super cool ballerina sticker paper doll book my aunt sent her when William was born that I've been saving for a special occasion.
The first big that happens is the doctor gives Natalie some sedative orally. After about ten minutes, Natalie is swaying a little in my lap. As she gets more and more loopy, things begin happening. Mike and I both found Natalie's happy sleepiness a pleasant distraction from the stress of sedation and injections. At some point she is ready to lay down. I smile at her, and she giggles. As she gets more and more out of it, she is harder to understand. She likes looking at the fish on the ceiling. She meows. She doesn't say or do anything particularly funny though.
When its time to really get going, the nurses put the IV in Natalie's arm. Because she is already sedated, she just whimpers and squirms a little, but we are able to distract her. After a small does of medicine, they put a splint over the IV so that Natalie can't tear at it. The splint is super girly and Natalie loves it.
Before the final medicine is delivered, the anesthesiologist came in with a medical student and discussed the procedure. Our rheomatologist comes in and looks over her joints to make sure there aren't any changes since we saw him last. He makes some tentative marks for the injections.
In all of this process, she gets hooked up to quite a few things for such a small child. She has a monitor taped on to her index finger on her left hand. Its red light glows and makes her finger look like ET. She also has a blood pressure cuff. She has oxygen tubes in her nose. And the other arm has the IV set up covered by the splint. Its a very good thing she is so loopy and sleepy or she would be quite unhappy. She is still with it enough to comment that there are a lot of doctors or to ask where Daddy is when she can't see him.
When its time, they take off the splint, and hook up the IV for the medicine. She gets more sedative to make waking up calmer. She gets medicine to dry up her secretions. Lastly, she gets the rest of the medicine to knock her out. During all this, Natalie is leaning more and more against me on the bed. With the last of the medicine, I snuggle her close and sing a bit in her ear, and she is out before I know it. Its a bit scary when I get untangled from the monitor cords and get off the bed because Natalie's eyes are almost all the way open. We kid with the nurses that Mike sometimes sleeps with his eyes open. As I walk away I realize I didn't give her a kiss, so I kiss her naked foot.
While Natalie gets her steroid injections in the treatment room, we are shown to her recovery room. Its a double room and another family is already in there. (Its a little girl about Natalie's age who had intestine surgery and who still isn't feeling well. She throws up while we are there. Her mom is worried that she felt great before, but now isn't talking and is lethargic. Her grandparents and sisters visit while we are there. Doctors / nurses check in with them several times). I take William to play in the atrium, which is full of toys and books. William loves playing with these big rubber balls. But he gets a little too careless and I get a little too confident in his abilities, and his face slams loudly onto the tile floor. A nurse running threw winces. He screeches. Luckily, no blood and his new teeth are intact. He gets a small red mark between the eyes later. Amazingly, no bruise forms. I take him back to the room to nurse him. Then Mike takes him to play. I see my sister called so I call her back and rush off the phone when the rheumatologist comes in.
He says that everything went fine. He got a little fluid out of all the joints, but got enough to test from her knees and ankles. (We didn't know they were going to run a test on the fluid). He injected the steriods with no problems. He says that next week we should start making the first physical therapy appointment. He expects that she might be a little sore the rest of the day, but that she will be back to normal soon. Mostly the sedation will bother her. We should see improvement right away. Then he takes me in to see her since she is waking up.
I am a little surprised when I see her laying there. Her eyes are still half open and her head is tilted up kind of funny. Her mouth is really dry from the medicine, so she is holding it open and trying to wet it with her tongue when she tries to talk. She is barely awake. I stroke her hair and kiss her forehead. I try to understand what she says. I try to give her Baby Kitty, but she can't hold her like she likes with her IV and monitor, so I rub Baby Kitty's tale on her hand since that is her favorite thing. The anesthesiologist says, "Remember next time she has a tantrum that as soon as she started waking up she was saying Mommy, Mommy."
Slowly, she wakes up more and more. Mike and William join us. William falls asleep in Mike's arms. Her eyes open more and focus more. She starts talking more clearly. We sit her up. They take off all things attached to her and take out the IV. When its time to move to her room, the nurse carries her. I was going to ask / offer / request to carry her myself, but didn't get a chance. Natalie is not happy to be carried by someone else. But once she is in her room on the bed she calms down pretty fast. I get on the bed with her and we convince her to get tucked in. Now she seems to perk up quickly. She is soon talking in complete sentences and ordering us around. She is playing with the stuffed animals they give her in particular.
After she drinks some water and eats some graham crackers, we are cleared to go home. Natalie wants to walk at first, but after a few steps she claims its too slippery. Its several hours before she is steady on her feet.
On the way home, both kids fall asleep so we try to sneak a trip to Wendy's, but Natalie wakes up. She is very upset that we aren't going into the restaurant, but eating in the car. She loves going to "Wendy's house" so I'm sure she was mad she didn't get the fun of a full visit. She gets over it though; I'm sure the fries helped. She is awake the rest of the way back to the house. After getting settled inside, we sit down to watch Shrek 2, which Mike and I picked our special for her at the library since she loves Puss in Boots since seeing him on our cat food last summer. Sadly, the DVD is badly scratched and gets stuck a lot, but even worse her ankles start hurting and she keeps crying out that it hurts and that she loves Daddy, whose lap she is sitting in. We decide to give her some ibuprofen, as the doctor instructed.
We keep her up all afternoon since we don't expect she'll nap after technically being asleep all morning. As the day wears on, she gets pretty hyper. She is up and down off the furniture and racing up and down the hall. So much for taking it easy!
Despite how wonderful everything went, I'm still feeling some conflicting emotions. Once the ibuprofen kicked in, Natalie was ready to play. After pretty much 6 months, I've gotten used to her not running around, but she was pretty hyper. She was climbing up and down the furniture and making lots of trips up and down the hall, often demanding I come with her without reason. Do I vaguely remember hyperactivity as one of the temporary side effects?
But what is really difficult is Natalie is acting, well, like a two year old. She is not listening to us, pushing boundaries, and pretending to do mean things. So, she appears to be feeling great, but isn't very pleasant to be around all day long. The sudden switch is difficult. She is either whiny and starts crying at the slightest rejection, or she just ignores you until you make threats. Mike uses a stern voice which I find scary and threatens to put her straight to bed (because he has her alone the hour or so before bed). That's not going to work all day though. The one time out we did worked well, but that was a really big tantrum on Easter where she needed to calm down. I don't think we would get the same results as a punishment. I think my first step is going to be clearly outlining our rules and routine and posting them. I'm hoping this will help for us to refer back to during the day. Mike thinks I'm jumping the gun, and true things might be better in a couple days after any injection side effects wear off. But we have to make it until then. And if they do what they are supposed to do, I think feeling better is going to allow her to exhibit these normal, ugly toddler behaviors, especially since they have been creeping in since we started the methotrexate.
Once there, we get lost inside the hospital since we see no signs for pediatrics or Barbara Bush Medical Center. We ask for directions twice, and make it to our location about ten minutes late. Turns out we were supposed to go to admitting, so we send Mike off to do that and I head with Natalie and William down the hall. We meet up with a nurse who brings us through a different admitting process including blood pressure and temperature. Natalie is afraid of this room since it has so many machines and medical equipment. She cheers up some when she gets some Lion King stickers. We stay in this room for the duration of the procedure, including her sedation.
Mike returns and soon the doctors arrive. We have seen about three nurses by this point, and there is also a medical student. Other nurses come and go to get supplies from this room. William crawls around on the floor for a while, but when things get serious Mike holds him. While we wait for everyone to arrive and the correct medicines to arrive from the pharmacy, Natalie looks over the stickers in her sticker book, and she plays with a super cool ballerina sticker paper doll book my aunt sent her when William was born that I've been saving for a special occasion.
 |
| Natalie and Mike in the treatment room. |
The first big that happens is the doctor gives Natalie some sedative orally. After about ten minutes, Natalie is swaying a little in my lap. As she gets more and more loopy, things begin happening. Mike and I both found Natalie's happy sleepiness a pleasant distraction from the stress of sedation and injections. At some point she is ready to lay down. I smile at her, and she giggles. As she gets more and more out of it, she is harder to understand. She likes looking at the fish on the ceiling. She meows. She doesn't say or do anything particularly funny though.
When its time to really get going, the nurses put the IV in Natalie's arm. Because she is already sedated, she just whimpers and squirms a little, but we are able to distract her. After a small does of medicine, they put a splint over the IV so that Natalie can't tear at it. The splint is super girly and Natalie loves it.
 |
| Natalie and me on the bed waiting for the final sedation medicine. |
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| William coming to say hello. |
In all of this process, she gets hooked up to quite a few things for such a small child. She has a monitor taped on to her index finger on her left hand. Its red light glows and makes her finger look like ET. She also has a blood pressure cuff. She has oxygen tubes in her nose. And the other arm has the IV set up covered by the splint. Its a very good thing she is so loopy and sleepy or she would be quite unhappy. She is still with it enough to comment that there are a lot of doctors or to ask where Daddy is when she can't see him.
When its time, they take off the splint, and hook up the IV for the medicine. She gets more sedative to make waking up calmer. She gets medicine to dry up her secretions. Lastly, she gets the rest of the medicine to knock her out. During all this, Natalie is leaning more and more against me on the bed. With the last of the medicine, I snuggle her close and sing a bit in her ear, and she is out before I know it. Its a bit scary when I get untangled from the monitor cords and get off the bed because Natalie's eyes are almost all the way open. We kid with the nurses that Mike sometimes sleeps with his eyes open. As I walk away I realize I didn't give her a kiss, so I kiss her naked foot.
While Natalie gets her steroid injections in the treatment room, we are shown to her recovery room. Its a double room and another family is already in there. (Its a little girl about Natalie's age who had intestine surgery and who still isn't feeling well. She throws up while we are there. Her mom is worried that she felt great before, but now isn't talking and is lethargic. Her grandparents and sisters visit while we are there. Doctors / nurses check in with them several times). I take William to play in the atrium, which is full of toys and books. William loves playing with these big rubber balls. But he gets a little too careless and I get a little too confident in his abilities, and his face slams loudly onto the tile floor. A nurse running threw winces. He screeches. Luckily, no blood and his new teeth are intact. He gets a small red mark between the eyes later. Amazingly, no bruise forms. I take him back to the room to nurse him. Then Mike takes him to play. I see my sister called so I call her back and rush off the phone when the rheumatologist comes in.
He says that everything went fine. He got a little fluid out of all the joints, but got enough to test from her knees and ankles. (We didn't know they were going to run a test on the fluid). He injected the steriods with no problems. He says that next week we should start making the first physical therapy appointment. He expects that she might be a little sore the rest of the day, but that she will be back to normal soon. Mostly the sedation will bother her. We should see improvement right away. Then he takes me in to see her since she is waking up.
I am a little surprised when I see her laying there. Her eyes are still half open and her head is tilted up kind of funny. Her mouth is really dry from the medicine, so she is holding it open and trying to wet it with her tongue when she tries to talk. She is barely awake. I stroke her hair and kiss her forehead. I try to understand what she says. I try to give her Baby Kitty, but she can't hold her like she likes with her IV and monitor, so I rub Baby Kitty's tale on her hand since that is her favorite thing. The anesthesiologist says, "Remember next time she has a tantrum that as soon as she started waking up she was saying Mommy, Mommy."
Slowly, she wakes up more and more. Mike and William join us. William falls asleep in Mike's arms. Her eyes open more and focus more. She starts talking more clearly. We sit her up. They take off all things attached to her and take out the IV. When its time to move to her room, the nurse carries her. I was going to ask / offer / request to carry her myself, but didn't get a chance. Natalie is not happy to be carried by someone else. But once she is in her room on the bed she calms down pretty fast. I get on the bed with her and we convince her to get tucked in. Now she seems to perk up quickly. She is soon talking in complete sentences and ordering us around. She is playing with the stuffed animals they give her in particular.
 |
| Natalie recovering in her room. |
After she drinks some water and eats some graham crackers, we are cleared to go home. Natalie wants to walk at first, but after a few steps she claims its too slippery. Its several hours before she is steady on her feet.
On the way home, both kids fall asleep so we try to sneak a trip to Wendy's, but Natalie wakes up. She is very upset that we aren't going into the restaurant, but eating in the car. She loves going to "Wendy's house" so I'm sure she was mad she didn't get the fun of a full visit. She gets over it though; I'm sure the fries helped. She is awake the rest of the way back to the house. After getting settled inside, we sit down to watch Shrek 2, which Mike and I picked our special for her at the library since she loves Puss in Boots since seeing him on our cat food last summer. Sadly, the DVD is badly scratched and gets stuck a lot, but even worse her ankles start hurting and she keeps crying out that it hurts and that she loves Daddy, whose lap she is sitting in. We decide to give her some ibuprofen, as the doctor instructed.
We keep her up all afternoon since we don't expect she'll nap after technically being asleep all morning. As the day wears on, she gets pretty hyper. She is up and down off the furniture and racing up and down the hall. So much for taking it easy!
 |
| Close up of Natalie's "cool new bracelet" and one band-aid. |
Despite how wonderful everything went, I'm still feeling some conflicting emotions. Once the ibuprofen kicked in, Natalie was ready to play. After pretty much 6 months, I've gotten used to her not running around, but she was pretty hyper. She was climbing up and down the furniture and making lots of trips up and down the hall, often demanding I come with her without reason. Do I vaguely remember hyperactivity as one of the temporary side effects?
But what is really difficult is Natalie is acting, well, like a two year old. She is not listening to us, pushing boundaries, and pretending to do mean things. So, she appears to be feeling great, but isn't very pleasant to be around all day long. The sudden switch is difficult. She is either whiny and starts crying at the slightest rejection, or she just ignores you until you make threats. Mike uses a stern voice which I find scary and threatens to put her straight to bed (because he has her alone the hour or so before bed). That's not going to work all day though. The one time out we did worked well, but that was a really big tantrum on Easter where she needed to calm down. I don't think we would get the same results as a punishment. I think my first step is going to be clearly outlining our rules and routine and posting them. I'm hoping this will help for us to refer back to during the day. Mike thinks I'm jumping the gun, and true things might be better in a couple days after any injection side effects wear off. But we have to make it until then. And if they do what they are supposed to do, I think feeling better is going to allow her to exhibit these normal, ugly toddler behaviors, especially since they have been creeping in since we started the methotrexate.
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