home again
Yesterday (the morning after my last blog entry) Emma had more blood work done. We were expecting her white blood cell count to be higher due to the neupogen. I was thinking her ANC might even make it to 1000-1500. If that was the case, then she'd be able to go home as long as the illness didn't wipe out her other blood counts, requiring transfusions.
"Lavatory" came in around 6am to take the blood test. Instead of a finger poke, or taking it from the IV (which apparently they can't do once they start fluids), they had to poke her in her other arm. Luckily she got it in one poke. Emma wasn't excited about it, but she didn't even cry. Good job, Emma!
At least 2-3 hours later, Emma wanted the ball of gauze and her bandaid off. I took it off, and she had a slightly smaller than a dime size hematoma that had formed from the poke (I know people bruise sometimes, but this looked a little different than that. it was more like a pool of blood under her skin), and it was still bleeding two to three hours later. So, the nurse came back with another ball of gauze and bandaid. It made me a bit concerned over her platelet count.
The results? Her ANC (strength of immune system) went from 200 all the way to 2000. If you remember, normal is at 2500 & safe is anything over 1000. So, 2000?!! That's amazing. It's been...I don't even know how many years since she's had an ANC like that. Maybe 5-6 years?
It explains why the day before (the same day that they gave her the meds to increase her wbc), her fever diminished during the day. Her little wbc were busy killing off the illness.
There two downsides to the GCSF. One is that it only works for a day. The other is that long term use increases the risk of leukemia (AML), which she's already had a high chance of developing. Due to that, sadly we can't use it daily like would be nice. Plus, white blood cells don't survive beyond a day. So, while the meds did their thing in getting her body to produce them, they are gone now, and her ANC is certainly low again. If her illness gets worse again, we can always go and get more of that medicine to help her body make more white blood cells. The doctor said she responded exceptionally well to it (and, I have to think some of that was due to all the prayers said in her behalf from everyone. So, thank you!).
As for her other blood counts, her hemoglobin stayed pretty steady! It didn't drop at all. Yay! Her platelets were 19. I'll explain a little about that. A normal amount of platelets is anything over 150. It's actually 150,000. So, she's down to 19 or 19,000. In order to do surgery on someone, they want platelets over 80-100. I've had doctors (actually it was a nurse practitioner) freak out when Emma's platelets were at 64. Under 50 is low and precautions should be taken, but under 20 is dangerously low. They really want to transplant somewhat urgently once platelets are down to 20-25.
As you can see, 19 isn't good...but at least she's not down to 9, like she's been before. They won't transfuse her unless she has a bigger bleed. Though some doctors would transfuse her now, but unless there is an active bleed occurring, it's kind of pointless (or so they tell me...I sometimes wonder since other doctors will transfuse platelets at this point with no bleeding). She needs to be careful, though, because she's at the point where she can spontaneously bleed, even without injury.
We'll be going back next week for her blood work to hopefully see that her blood counts are higher.
So she was discharged yesterday mid-morning!! She was feeling much better. She finally got up, dressed, and explored the room a little bit. She sat and played with some toys and the baby, and it was good to see that her cloudy mind seemed to clear and return to normal.
Here she is shortly before we left:
I don't think I explained about her hair on here. I posted the pictures in the previous blog entry where it was braided all around. Her hair was getting really in need of a wash (very greasy), and she wasn't up for it, so I braided it all around her head instead. She loved it. It was the first time I'd tried that, and it's not the last. I didn't really know what I was doing.
Ella hung out here most of the time. It was the couch that pulled out into a "bed". We slept on it horizontally. That meant our feet hung off of it. It was the cause of much laughter.
That was Kyrie's bed below, which was supposed to be pulled out and then up to be level to the higher portion, but we liked it lower. Ella liked climbing all around it. It kept her off the floor. Sometimes she hung out in her pack-n-play. She would sleep in it some at night (starting off), but the majority of the night she slept with me.
I haven't decided if I should feel bad or not, but I'm pretty sure that Emma has never had a popsicle before. If she has, she didn't know what it was. They used it to bribe her to take one of her meds. And, yes, I know what sugar does to the body, which is why I'm not sure she's had this before. But the girl deserved something to make her smile...or cross her eyes!
There were lots of funny things that happened while we were there that I want to write out before I forget. I already wrote this one out on FB, so I'll copy/paste. My house has turned into a little war zone of screaming babies as I near the end of writing this, so I'll write more later.
-----
Funny story...
Early this morning, as we were sleeping, a lady came by and knocked really loud on the door several times. No consideration that she really didn't need to wake up everyone in the whole room. She then opened the door, walked in, and started yelling "Lavatory! Lavatory!" with a heavy accent.
I was so confused and immediately thought two things:
(1) if she wakes up the baby, someone's going to get a karate chop to the head.
(2). Why was she yelling "lavatory"?
After hushing her, and trying to restrain myself from looking at her like she'd lost her mind, I realized she was there to do LAB work. Her accent made her say "v" instead of "b".
Hehe.
I wonder if anyone has ever mentioned that she might want to work on her enunciation. I won't be because it made me smile...and then laugh a lot the more I thought of it. "Lavatory!"
Besides not being very excited about how she woke us up, I thought she was great. She was very sweet and did a great job.
----
I'll try writing more later. Sometimes it amazes me how hard it is to sit at the computer and write something!
It's really good to be home. :) Though, despite how bad things were with Emma's health, we all had lots of fun making the best of it, and it was a bonding time. We've likened it to Lord of the Rings... Okay, so maybe that's a bit extreme to compare to a hospital stay that only spanned across four days to Lord of the Rings. Plus, we didn't have bows and arrow or any swords...hmmm.... (Kyrie take note that we need to bring those next time.)
"Lavatory" came in around 6am to take the blood test. Instead of a finger poke, or taking it from the IV (which apparently they can't do once they start fluids), they had to poke her in her other arm. Luckily she got it in one poke. Emma wasn't excited about it, but she didn't even cry. Good job, Emma!
At least 2-3 hours later, Emma wanted the ball of gauze and her bandaid off. I took it off, and she had a slightly smaller than a dime size hematoma that had formed from the poke (I know people bruise sometimes, but this looked a little different than that. it was more like a pool of blood under her skin), and it was still bleeding two to three hours later. So, the nurse came back with another ball of gauze and bandaid. It made me a bit concerned over her platelet count.
The results? Her ANC (strength of immune system) went from 200 all the way to 2000. If you remember, normal is at 2500 & safe is anything over 1000. So, 2000?!! That's amazing. It's been...I don't even know how many years since she's had an ANC like that. Maybe 5-6 years?
It explains why the day before (the same day that they gave her the meds to increase her wbc), her fever diminished during the day. Her little wbc were busy killing off the illness.
There two downsides to the GCSF. One is that it only works for a day. The other is that long term use increases the risk of leukemia (AML), which she's already had a high chance of developing. Due to that, sadly we can't use it daily like would be nice. Plus, white blood cells don't survive beyond a day. So, while the meds did their thing in getting her body to produce them, they are gone now, and her ANC is certainly low again. If her illness gets worse again, we can always go and get more of that medicine to help her body make more white blood cells. The doctor said she responded exceptionally well to it (and, I have to think some of that was due to all the prayers said in her behalf from everyone. So, thank you!).
As for her other blood counts, her hemoglobin stayed pretty steady! It didn't drop at all. Yay! Her platelets were 19. I'll explain a little about that. A normal amount of platelets is anything over 150. It's actually 150,000. So, she's down to 19 or 19,000. In order to do surgery on someone, they want platelets over 80-100. I've had doctors (actually it was a nurse practitioner) freak out when Emma's platelets were at 64. Under 50 is low and precautions should be taken, but under 20 is dangerously low. They really want to transplant somewhat urgently once platelets are down to 20-25.
As you can see, 19 isn't good...but at least she's not down to 9, like she's been before. They won't transfuse her unless she has a bigger bleed. Though some doctors would transfuse her now, but unless there is an active bleed occurring, it's kind of pointless (or so they tell me...I sometimes wonder since other doctors will transfuse platelets at this point with no bleeding). She needs to be careful, though, because she's at the point where she can spontaneously bleed, even without injury.
We'll be going back next week for her blood work to hopefully see that her blood counts are higher.
So she was discharged yesterday mid-morning!! She was feeling much better. She finally got up, dressed, and explored the room a little bit. She sat and played with some toys and the baby, and it was good to see that her cloudy mind seemed to clear and return to normal.
Here she is shortly before we left:
Ella hung out here most of the time. It was the couch that pulled out into a "bed". We slept on it horizontally. That meant our feet hung off of it. It was the cause of much laughter.
That was Kyrie's bed below, which was supposed to be pulled out and then up to be level to the higher portion, but we liked it lower. Ella liked climbing all around it. It kept her off the floor. Sometimes she hung out in her pack-n-play. She would sleep in it some at night (starting off), but the majority of the night she slept with me.
There were lots of funny things that happened while we were there that I want to write out before I forget. I already wrote this one out on FB, so I'll copy/paste. My house has turned into a little war zone of screaming babies as I near the end of writing this, so I'll write more later.
-----
Funny story...
Early this morning, as we were sleeping, a lady came by and knocked really loud on the door several times. No consideration that she really didn't need to wake up everyone in the whole room. She then opened the door, walked in, and started yelling "Lavatory! Lavatory!" with a heavy accent.
I was so confused and immediately thought two things:
(1) if she wakes up the baby, someone's going to get a karate chop to the head.
(2). Why was she yelling "lavatory"?
After hushing her, and trying to restrain myself from looking at her like she'd lost her mind, I realized she was there to do LAB work. Her accent made her say "v" instead of "b".
Hehe.
I wonder if anyone has ever mentioned that she might want to work on her enunciation. I won't be because it made me smile...and then laugh a lot the more I thought of it. "Lavatory!"
Besides not being very excited about how she woke us up, I thought she was great. She was very sweet and did a great job.
----
I'll try writing more later. Sometimes it amazes me how hard it is to sit at the computer and write something!
It's really good to be home. :) Though, despite how bad things were with Emma's health, we all had lots of fun making the best of it, and it was a bonding time. We've likened it to Lord of the Rings... Okay, so maybe that's a bit extreme to compare to a hospital stay that only spanned across four days to Lord of the Rings. Plus, we didn't have bows and arrow or any swords...hmmm.... (Kyrie take note that we need to bring those next time.)
Already on it, girl-sista-friend! Do you prefer broadswords, rapiers, or are you more partial to a bow?
ReplyDelete