Daddy and Claire always have fun together. She picked up rocks and put them in the bucket after Daddy dug them out of the hole. Very helpful, you know...
Monday, May 10, 2010
digging holes with daddy...
Daddy and Claire always have fun together. She picked up rocks and put them in the bucket after Daddy dug them out of the hole. Very helpful, you know...
stats...
Here we go:
CRP: from 28.8 to 37.3 to...... 0.9 (supposed to be below 0.8)
ESR: from 106 to 94 to......... 42 (supposed to be between 1-9)
*Compliments: normal
WBC: from 25 to...... 14 (supposed to be 6-17)
*Hemoglobin: normal
*Platelets: 717,000 (supposed to be 450,000)
*Neutrophil: 41% (supposed to be 33%)
*First time they tested for this level---helps in evaluation for Still's Disease
Doc evaluation: Everything that would be suspect in Still's disease is/was high, but they think it has reacted faster to the drugs than they would have seen if it was Still's. The Platelets and Neutrophil rates are still suggesting that Still's is not completely ruled out yet. We are to watch her and make sure nothing flares back up as we take her off steroids completely. Still won't rule out pseudo blah blah serum sickness (can you tell how I really feel about this one? not that I want it to be Still's, but I can at least look that one up!)
The worrying mother's take:
Could these only be reacting faster to the drugs now? After the second course of drugs has run through her body? I still am lost on what half of this stuff means! Even after I badger the doc and look everything up!
My take:
Yeah, my baby is doing better! She is much more herself these days---but shy-er. I'll take what I can get.
CRP: from 28.8 to 37.3 to...... 0.9 (supposed to be below 0.8)
ESR: from 106 to 94 to......... 42 (supposed to be between 1-9)
*Compliments: normal
WBC: from 25 to...... 14 (supposed to be 6-17)
*Hemoglobin: normal
*Platelets: 717,000 (supposed to be 450,000)
*Neutrophil: 41% (supposed to be 33%)
*First time they tested for this level---helps in evaluation for Still's Disease
Doc evaluation: Everything that would be suspect in Still's disease is/was high, but they think it has reacted faster to the drugs than they would have seen if it was Still's. The Platelets and Neutrophil rates are still suggesting that Still's is not completely ruled out yet. We are to watch her and make sure nothing flares back up as we take her off steroids completely. Still won't rule out pseudo blah blah serum sickness (can you tell how I really feel about this one? not that I want it to be Still's, but I can at least look that one up!)
The worrying mother's take:
Could these only be reacting faster to the drugs now? After the second course of drugs has run through her body? I still am lost on what half of this stuff means! Even after I badger the doc and look everything up!
My take:
Yeah, my baby is doing better! She is much more herself these days---but shy-er. I'll take what I can get.
Friday, May 7, 2010
per request...
There hasn't been much to tell, so I haven't wanted to rant and rave on the blog again. *feels little embarrassed* Sorry you all had to listen to me whine. I would delete it, but I believe it good for posterity to show your bad side with the good.
Claire has progressively gotten better with her scratching. Each day the fits became less and less. This morning---nothing. We have been on the phone with doctors everyday. They always want her status report, which makes me feel reassured that we are trying as hard as we can to do the best things as possible.
Wednesday was much the same as Tuesday, but I started to understand her needs for the scratching better. I don't believe that meds do very much for the itching. An hour after I dose her with it, it will still come on. Oh well. Starting to wind down so it doesn't matter.
Yesterday we took her a step down on the dosage of the steroid. She ran a low-grade fever and the rash was present, but it looked a LOT less severe. She still took quite a nap. I was able to convince a good friend from high school to come over and just talk to me. Much needed adult time. Helped a lot.
Today the doc ordered some tests to be done. Claire did NOT enjoy going to the doc, and we tried to prepare her by saying things like: "we have to get an owie today, sis, but it will be over fast!" We brought her a new toy that was sent from our good friends, The Farvers (from JC, Oregon). She liked it in the waiting room, but then screamed bloody murder anyway. She still won't answer what a cow does, where her belly button is, or things that we have used to try and distract her from previous pokes and tests. The blood draw was horrible because they couldn't get the vein to bleed, so they had to move the needle a TON and then restick her and move it again. She was so upset. but, as soon as it was over, she stopped crying and asked for "water". she got a sucker instead. Not something I prefer to give for pain, but she probably needed the sugar.
Later, driving by the hospital, she said, "Owie, C?" She's quite the kid, if you ask me.
they are testing her inflammation levels (ESR and CRP), her compliments (something with the immune system), her liver (a level they need in JRA diagnosis) and her white blood cells. there's something else, but I don't remember. It was interesting to me to notice that they are not checking her ANA, but they don't think she has that type of JRA. Okay, you know better than me, but I would sure have liked to ruled it out.
We'll find out more on Monday.
Some people have asked what pseudo serum sickness is: short answer---I don't know. Long answer---I still don't know. When I tried to look it up, it only brought up serum sickness. This being pseudo serum sickness makes me even MORE confused. I asked the doc that calls me everyday to send me info, she doesn't have any---not very reassuring to me. The rashes they have pics of do not look the same as what claire had.
(not Claire, just googled it)
Claire has progressively gotten better with her scratching. Each day the fits became less and less. This morning---nothing. We have been on the phone with doctors everyday. They always want her status report, which makes me feel reassured that we are trying as hard as we can to do the best things as possible.
Wednesday was much the same as Tuesday, but I started to understand her needs for the scratching better. I don't believe that meds do very much for the itching. An hour after I dose her with it, it will still come on. Oh well. Starting to wind down so it doesn't matter.
Yesterday we took her a step down on the dosage of the steroid. She ran a low-grade fever and the rash was present, but it looked a LOT less severe. She still took quite a nap. I was able to convince a good friend from high school to come over and just talk to me. Much needed adult time. Helped a lot.
Today the doc ordered some tests to be done. Claire did NOT enjoy going to the doc, and we tried to prepare her by saying things like: "we have to get an owie today, sis, but it will be over fast!" We brought her a new toy that was sent from our good friends, The Farvers (from JC, Oregon). She liked it in the waiting room, but then screamed bloody murder anyway. She still won't answer what a cow does, where her belly button is, or things that we have used to try and distract her from previous pokes and tests. The blood draw was horrible because they couldn't get the vein to bleed, so they had to move the needle a TON and then restick her and move it again. She was so upset. but, as soon as it was over, she stopped crying and asked for "water". she got a sucker instead. Not something I prefer to give for pain, but she probably needed the sugar.
Later, driving by the hospital, she said, "Owie, C?" She's quite the kid, if you ask me.
they are testing her inflammation levels (ESR and CRP), her compliments (something with the immune system), her liver (a level they need in JRA diagnosis) and her white blood cells. there's something else, but I don't remember. It was interesting to me to notice that they are not checking her ANA, but they don't think she has that type of JRA. Okay, you know better than me, but I would sure have liked to ruled it out.
We'll find out more on Monday.
Some people have asked what pseudo serum sickness is: short answer---I don't know. Long answer---I still don't know. When I tried to look it up, it only brought up serum sickness. This being pseudo serum sickness makes me even MORE confused. I asked the doc that calls me everyday to send me info, she doesn't have any---not very reassuring to me. The rashes they have pics of do not look the same as what claire had.
(not Claire, just googled it)
Tuesday, May 4, 2010
pseudo start...
Tuesday:
12:16am: Fever check, feels cool or even cold. Cover up better and go back to bed.
2:34am: Claire wakes up screaming. No fever, no anything I can understand. She is scratching majorly. Give Benedryl and put back to bed.
8:45am: get out of shower to screaming. Run towel-naked into her room. No fever.
"old (hold) me, Momma, old me!" I pick her up.
"down, down, down!" I put her down.
This goes on for 20 minutes. She is scratching violently. Still dripping wet and wondering if that is adding to her scratching (you know how water dries and makes you itch sometimes?).
I look at her legs: COVERED in bloodied scratches. Rash is back around her joints (knees and elbows).
Dose her with steroids and Benedryl. She is still screaming. Won't calm down. Won't eat or drink. Thrashes and tries to scratch. Dress her like mummy to prevent scratching. SCREAMING! I can't handle it anymore. Put her in her room and close the door. scared to death and worried I'll smack her cause the screaming won't stop! How could I?! Why do I even think such things!?
Running through my head what might help. Call Nick. Give her bath, hoping to maybe wash away what's making her itch. Call Nick. Rash more noticeable in water. Freaking out. Call Nick. Call original doc. She calms down some. I get her to eat some cereal (bribe her is a better word). After eating, she gets better.
Dress like mummy again. She rolls on the ground, thrashing, trying to scratch. Starts to pull chunks of hair out of head.
45 mins pass since dosing. She calms all the way down and notices my tears. Brings me HER blanket and kisses me, wipes at my tears.
No idea what happened. I think the steroids are really strong and they wear off between doses. Doc also told me that the steroids themselves can cause psychosis. People literally see things and feel things on their skin. So would giving her another dose cause her to calm???
Am literally emotionally exhausted. Don't know what to do. Is this pseudo serum sickness the right answer????? Called doc from Primary's. The only other thought might be Still's disease. Which they would treat with the same medicine. Scares me too, cause it's still an autoimmune disease. Doc said rash is different from typical rash that indicates Still's, though. Everything else fits that I can find.
Nick comes home with lunch. I'm at wit's end. He puts me to bed and turns on movie for Claire. She comes wandering up about 10 minutes later. Finds Momma and says, "Up, bed? Momma seep-in (sleeping)?" She falls asleep next to me for about 45 mins. Now she's asleep and I'm here. Tearing my hear out.
Sorry this blog has become my sanity. I vent here so I don't do something stupid.
12:16am: Fever check, feels cool or even cold. Cover up better and go back to bed.
2:34am: Claire wakes up screaming. No fever, no anything I can understand. She is scratching majorly. Give Benedryl and put back to bed.
8:45am: get out of shower to screaming. Run towel-naked into her room. No fever.
"old (hold) me, Momma, old me!" I pick her up.
"down, down, down!" I put her down.
This goes on for 20 minutes. She is scratching violently. Still dripping wet and wondering if that is adding to her scratching (you know how water dries and makes you itch sometimes?).
I look at her legs: COVERED in bloodied scratches. Rash is back around her joints (knees and elbows).
Dose her with steroids and Benedryl. She is still screaming. Won't calm down. Won't eat or drink. Thrashes and tries to scratch. Dress her like mummy to prevent scratching. SCREAMING! I can't handle it anymore. Put her in her room and close the door. scared to death and worried I'll smack her cause the screaming won't stop! How could I?! Why do I even think such things!?
Running through my head what might help. Call Nick. Give her bath, hoping to maybe wash away what's making her itch. Call Nick. Rash more noticeable in water. Freaking out. Call Nick. Call original doc. She calms down some. I get her to eat some cereal (bribe her is a better word). After eating, she gets better.
Dress like mummy again. She rolls on the ground, thrashing, trying to scratch. Starts to pull chunks of hair out of head.
45 mins pass since dosing. She calms all the way down and notices my tears. Brings me HER blanket and kisses me, wipes at my tears.
No idea what happened. I think the steroids are really strong and they wear off between doses. Doc also told me that the steroids themselves can cause psychosis. People literally see things and feel things on their skin. So would giving her another dose cause her to calm???
Am literally emotionally exhausted. Don't know what to do. Is this pseudo serum sickness the right answer????? Called doc from Primary's. The only other thought might be Still's disease. Which they would treat with the same medicine. Scares me too, cause it's still an autoimmune disease. Doc said rash is different from typical rash that indicates Still's, though. Everything else fits that I can find.
Nick comes home with lunch. I'm at wit's end. He puts me to bed and turns on movie for Claire. She comes wandering up about 10 minutes later. Finds Momma and says, "Up, bed? Momma seep-in (sleeping)?" She falls asleep next to me for about 45 mins. Now she's asleep and I'm here. Tearing my hear out.
Sorry this blog has become my sanity. I vent here so I don't do something stupid.
Monday, May 3, 2010
the return...
well, last week---Wednesday to be exact, I notice:
Not a huge deal, rashes happen, right? I watch it. It's different from last time. In her diaper area...again. But it made her poor butt bleed. eesh! Well, Nick reminds me to mention this to the doc for her post hospital check up which is the next day: Thursday.
Thursday:
2am: Claire wakes up screaming. Comfort and put back to bed.
8am: Claire wakes up, feed her, put her in bath.........................................AGGHHHH!
Rash has spread. All over torso. Different still from last time (huge red sheet). This is more splotchy. Fever, low but there. Well, we're already going to doc. Good.
10:30am: Doc says looks like viral rash. Probably from being on steroids. Wrecks havoc on immune system. Became weaker and allowed whatever virus that was not touching her to rear ugly head. Watch it and call with questions or concerns.
Friday:
8am: Claire is up and practicing getting in and out of big girl bed, so she won't fall out again. I'm on the phone with Krista (MIL) and we're talking about how big Claire is getting. She mentions that she's concerned about the rash...am I? Nah. It'll be okay. But I look just to be sure.
"uhhh...it's back, Krista." that's right. Rash has mutated into smaller version of last time. Spots aren't as huge, but still big red sheet sizes of hand and smaller instead of whole body. "Go park on the doc's doorstep, deb", Krista tells me. Obviously very concerned. I call Nick and we decide to call doc, because he said we could.
Doc tells me to go to dermatologist.
10:10am: Dermatologist fit me in because doc made them. Ohhh...she probably just got off steroids too soon. Here is a dose. Use for three weeks (horrible for kids, by the way. They NEED their immune systems, which steriods weaken).
Bed time: Claire is exhausted, she has a small fever. Give her IB Proffen and put to bed (after brushing teeth, of course).
Sat:
2:30am: Claire wakes up screaming. She's is BURNING up. I swear it was like she had a temp of 107 F or something. Pass her screaming off to Nick, grab IB Proffen and thermometer. Took it like fourteen times, said different things each time: 103+ Rash all over body.
Call Doc. Use Tylenol and IB Proffen in rotation every three hours.
Fever calms down to 102 F
Drug her up all day Sat, didn't want to walk or crawl several times all day. Wouldn't eat much, drank some. Way fussy. Grampa Matt and Uncle Greg were here with us to help with fence raising. Not a whole lot of fun to be around Claire, poor guys.
This is following WAY too close to two weeks ago. Exact pattern, same symptoms, scaring me to death. AGH!
8pm: Claire is fussier and has higher fever. We forgot to give her her 6pm dose---which does not make me feel better. She's not getting better, we're just masking her symptoms.
8:30pm: Put Claire down, drugged up and delirious.
11:30pm: Dose, fever check 103 F
Sunday:
2:00isham: Dose, fever check 102 F
5:00isham: Dose, fever check 101 F
8:00isham: Dose, fever check 101 F, not walking, drinking or eating.
Call Doc: not sure what to do besides admit her and look more closely. Call us back in a bit.
Give Claire a bath, try and feed her, pack for hospital. She eats ENTIRE BOWL of cereal, starts to crawl a bit, drinks, happy.
Doc calls back:
me: she's doing okay now...?
Doc: if she gets worse, take her to this clinic that's open Sundays and ask to see a guy named Doc Shcnider.
10am: Claire and Dad are exhausted. Put Dad down for a nap and Claire decides she wants to stay with Daddy. In bed with Dad (she's NEVER done this, not even as an infant---cutest thing I've ever seen) for a THREEPOINTFIVE HOUR NAP!
1:30pm: Claire starts to talk, so I know she's awake. I go in to grab her and Nick is ready to get up too. Claire won't drink, feels hot and won't walk. Decide to give her another bath, because we think that's what made the difference this morning. Nope, screamed the whole bath long. Still won't walk, drink, eat.
2:30pm with Doc Schnider:
Take her to Primary Children's Hospital. Doc Bohnsac will be paged, he's a rhumatoidist (or whatever). Could possibly be JRA (Juvenile Rheumatoid Arthritis) or something in that family. Uhhhh...did you just say an autoimmune disease????!
6:00pm with three docs at Primary Children's:
All agree it is pseudo serum sickness.
Her blood levels were checked:
37.3 CPR
96 ESR (is that right)
35 White Blood Count
All higher than the first hospital visit.
Treat with steroids (3x the dose that Logan prescribed)
Monday: Went back to specialist, still thinks the same thing.
Hate this diagnosis. Don't agree. How on EARTH could she have contracted it?
a rash.
On Claire.
Not a huge deal, rashes happen, right? I watch it. It's different from last time. In her diaper area...again. But it made her poor butt bleed. eesh! Well, Nick reminds me to mention this to the doc for her post hospital check up which is the next day: Thursday.
Thursday:
2am: Claire wakes up screaming. Comfort and put back to bed.
8am: Claire wakes up, feed her, put her in bath.........................................AGGHHHH!
Rash has spread. All over torso. Different still from last time (huge red sheet). This is more splotchy. Fever, low but there. Well, we're already going to doc. Good.
10:30am: Doc says looks like viral rash. Probably from being on steroids. Wrecks havoc on immune system. Became weaker and allowed whatever virus that was not touching her to rear ugly head. Watch it and call with questions or concerns.
Friday:
8am: Claire is up and practicing getting in and out of big girl bed, so she won't fall out again. I'm on the phone with Krista (MIL) and we're talking about how big Claire is getting. She mentions that she's concerned about the rash...am I? Nah. It'll be okay. But I look just to be sure.
"uhhh...it's back, Krista." that's right. Rash has mutated into smaller version of last time. Spots aren't as huge, but still big red sheet sizes of hand and smaller instead of whole body. "Go park on the doc's doorstep, deb", Krista tells me. Obviously very concerned. I call Nick and we decide to call doc, because he said we could.
Doc tells me to go to dermatologist.
10:10am: Dermatologist fit me in because doc made them. Ohhh...she probably just got off steroids too soon. Here is a dose. Use for three weeks (horrible for kids, by the way. They NEED their immune systems, which steriods weaken).
Bed time: Claire is exhausted, she has a small fever. Give her IB Proffen and put to bed (after brushing teeth, of course).
Sat:
2:30am: Claire wakes up screaming. She's is BURNING up. I swear it was like she had a temp of 107 F or something. Pass her screaming off to Nick, grab IB Proffen and thermometer. Took it like fourteen times, said different things each time: 103+ Rash all over body.
Call Doc. Use Tylenol and IB Proffen in rotation every three hours.
Fever calms down to 102 F
Drug her up all day Sat, didn't want to walk or crawl several times all day. Wouldn't eat much, drank some. Way fussy. Grampa Matt and Uncle Greg were here with us to help with fence raising. Not a whole lot of fun to be around Claire, poor guys.
This is following WAY too close to two weeks ago. Exact pattern, same symptoms, scaring me to death. AGH!
8pm: Claire is fussier and has higher fever. We forgot to give her her 6pm dose---which does not make me feel better. She's not getting better, we're just masking her symptoms.
8:30pm: Put Claire down, drugged up and delirious.
11:30pm: Dose, fever check 103 F
Sunday:
2:00isham: Dose, fever check 102 F
5:00isham: Dose, fever check 101 F
8:00isham: Dose, fever check 101 F, not walking, drinking or eating.
Call Doc: not sure what to do besides admit her and look more closely. Call us back in a bit.
Give Claire a bath, try and feed her, pack for hospital. She eats ENTIRE BOWL of cereal, starts to crawl a bit, drinks, happy.
Doc calls back:
me: she's doing okay now...?
Doc: if she gets worse, take her to this clinic that's open Sundays and ask to see a guy named Doc Shcnider.
10am: Claire and Dad are exhausted. Put Dad down for a nap and Claire decides she wants to stay with Daddy. In bed with Dad (she's NEVER done this, not even as an infant---cutest thing I've ever seen) for a THREEPOINTFIVE HOUR NAP!
1:30pm: Claire starts to talk, so I know she's awake. I go in to grab her and Nick is ready to get up too. Claire won't drink, feels hot and won't walk. Decide to give her another bath, because we think that's what made the difference this morning. Nope, screamed the whole bath long. Still won't walk, drink, eat.
2:30pm with Doc Schnider:
Take her to Primary Children's Hospital. Doc Bohnsac will be paged, he's a rhumatoidist (or whatever). Could possibly be JRA (Juvenile Rheumatoid Arthritis) or something in that family. Uhhhh...did you just say an autoimmune disease????!
6:00pm with three docs at Primary Children's:
All agree it is pseudo serum sickness.
Her blood levels were checked:
37.3 CPR
96 ESR (is that right)
35 White Blood Count
All higher than the first hospital visit.
Treat with steroids (3x the dose that Logan prescribed)
Monday: Went back to specialist, still thinks the same thing.
Hate this diagnosis. Don't agree. How on EARTH could she have contracted it?
Thursday, April 22, 2010
we're home...
Hello!
So yesterday, after Claire's first 2 hour nap of the day, she ate almost a whole French toast! First thing she's eaten besides a few fruit snacks here and there. Go CMonster! Then she finally was so tired (again) that she fussed, fussed, fussed. We had to ask the nurses if we could give her her meds early so we could put her down. She was wiped. They hooked up her IV again and she slept. For THREE HOURS!
Right as she woke up, the doctor came by and asked if we wanted to go home. Ummmm...do you really have to ask?
Here is what he told us (this is MY understanding of it all...hopefully I got it all right):
-Cultures of spinal fluid, blood and nose all looked really good and normal.
-Urine culture showed signs of a urinary tract infection with some sort of bacteria that was weird and I don't remember.
-Urine also showed a second bacteria growing: staph. From what I understand, the staph had come on so strong that it was starting to get systemic (an illness that affects multiple organs, systems or tissues, or the entire body---Wikipedia), which is why she was having so many problems. The next stage would have been organ failure.
Treatment:
-antibiotics
-steroids
Most Likely Causes:
-Bubble baths (eesh! I do that all the time! Not anymore)
-Potty training (sigh---so much for having her out of diapers before Monster #2. We had really just started putting her on on the potty before/after naps/bed/bath. Nothing too aggressive, at least so I thought.)
Warnings:
-if she has another UTI, she will have to go in for more invasive tests to ensure that she doesn't have 'webbing' from the tubes that go from the kidneys to the bladder.
What does Claire look like:
-steroids have reduced the rash SIGNIFICANTLY! It's still faintly there...you can see the outlines, but so much better.
-Needle bruises up and down both arms. Only a small bruise from the lumbar puncture. and a huge bruise on momma's heart!
-Scratches all over her body---mostly scabbed over. All within the rash.
-Sunken, dark eyes
-Green tinge to whole body
We had our lunch (three hours late). Claire ate a ton of grapes and and some yams. Nurses pulled out IV's and monitors. We signed some papers. Claire was SO EXCITED when we told her we were going home (okay---so was I. Nick had to tell us both to be quiet a few times). We headed for home about 5pm.
She fussed and fussed and fussed. I was finally willing to put her down at about 8:30pm. Wouldn't eat anything else. Wouldn't drink anything else, either. Going to be hard to ween her off juice---her only source of food besides the IV's for the last 4 days (I don't like juice. She can eat fruit for her vitamins---she doesn't need the extra sugar!).
I assumed I would be up with her all night because of the upset to her schedule from the last three nights. She slept a full 12 hours. Even with me checking on her every couple of hours. Wow. Guess she was beat.
This morning she won't leave my side and expects me to entertain her at all times. Something I HAD to do in the hospital. I wasn't going to leave my little girl to be scared in the hospital, so I ruined that training for a while. Hopefully it will come back soon. She ate a whole bowl of yogurt with sunflower seeds and wanted another portion. Won't drink, but I'm sure that's just because I won't give her juice...unless I'm desperate.
We're doing great. Thanks again for all the support!
So yesterday, after Claire's first 2 hour nap of the day, she ate almost a whole French toast! First thing she's eaten besides a few fruit snacks here and there. Go CMonster! Then she finally was so tired (again) that she fussed, fussed, fussed. We had to ask the nurses if we could give her her meds early so we could put her down. She was wiped. They hooked up her IV again and she slept. For THREE HOURS!
Right as she woke up, the doctor came by and asked if we wanted to go home. Ummmm...do you really have to ask?
Here is what he told us (this is MY understanding of it all...hopefully I got it all right):
-Cultures of spinal fluid, blood and nose all looked really good and normal.
-Urine culture showed signs of a urinary tract infection with some sort of bacteria that was weird and I don't remember.
-Urine also showed a second bacteria growing: staph. From what I understand, the staph had come on so strong that it was starting to get systemic (an illness that affects multiple organs, systems or tissues, or the entire body---Wikipedia), which is why she was having so many problems. The next stage would have been organ failure.
Treatment:
-antibiotics
-steroids
Most Likely Causes:
-Bubble baths (eesh! I do that all the time! Not anymore)
-Potty training (sigh---so much for having her out of diapers before Monster #2. We had really just started putting her on on the potty before/after naps/bed/bath. Nothing too aggressive, at least so I thought.)
Warnings:
-if she has another UTI, she will have to go in for more invasive tests to ensure that she doesn't have 'webbing' from the tubes that go from the kidneys to the bladder.
What does Claire look like:
-steroids have reduced the rash SIGNIFICANTLY! It's still faintly there...you can see the outlines, but so much better.
-Needle bruises up and down both arms. Only a small bruise from the lumbar puncture. and a huge bruise on momma's heart!
-Scratches all over her body---mostly scabbed over. All within the rash.
-Sunken, dark eyes
-Green tinge to whole body
We had our lunch (three hours late). Claire ate a ton of grapes and and some yams. Nurses pulled out IV's and monitors. We signed some papers. Claire was SO EXCITED when we told her we were going home (okay---so was I. Nick had to tell us both to be quiet a few times). We headed for home about 5pm.
She fussed and fussed and fussed. I was finally willing to put her down at about 8:30pm. Wouldn't eat anything else. Wouldn't drink anything else, either. Going to be hard to ween her off juice---her only source of food besides the IV's for the last 4 days (I don't like juice. She can eat fruit for her vitamins---she doesn't need the extra sugar!).
I assumed I would be up with her all night because of the upset to her schedule from the last three nights. She slept a full 12 hours. Even with me checking on her every couple of hours. Wow. Guess she was beat.
This morning she won't leave my side and expects me to entertain her at all times. Something I HAD to do in the hospital. I wasn't going to leave my little girl to be scared in the hospital, so I ruined that training for a while. Hopefully it will come back soon. She ate a whole bowl of yogurt with sunflower seeds and wanted another portion. Won't drink, but I'm sure that's just because I won't give her juice...unless I'm desperate.
We're doing great. Thanks again for all the support!
Wednesday, April 21, 2010
update...
Claire had quite the day yesterday. She was needing a diaper change about every hour, so they decided to take out the IV yesterday about 5pm, but leave the port so they could inject her antibiotics. She still had a leash, though. The oxygen level/heart monitor was left on, so she could only walk about 5 feet in our tiny room. She was bouncing off the walls! It was very hard to contain her from pulling off her tethers. She wanted out, out, out! Obviously a sign of improvement.
Anthony, Camilla and Miles stopped by last night with a doctor's kit for Claire. It had a stethoscope in it. What an idea! She wasn't nearly as spooked of that this morning! Miles was a riot! He was so happy. A nice change.
It was not as hard to leave her last night to go to sleep because she had been so whiny all day. I was ready for a break.
She slept like a log. When they came in to inject her antibiotics, she went right back to sleep. Not a peep. Not even after they drew blood at 4am. Nick held her tight. She didn't scream or fight like she has before.
I got a call at about 630am to tell me that her potassium was looking high and that the doctor would like another blood draw...sigh. So, at about 7:30, we did another one. She had a few shouts to the mean ladies poking her again from her sleep, but one tear and she was done.
She's been itching like crazy. We finally had to cover every body part we could so that she wouldn't be able to itch as easily. She drew blood a couple of times. Benadryl doesn't help. There was even an anti-itch med in her IV, but it hasn't touched it. I'm sure a bath will help, but that's not allowed until she has no IV.
Doctor Stevens came in about 8:30 with the results:
-CRP (the inflammatory one) is down to an 8. They feel confident that it will continue to drop.
-White blood cells are normal from this morning's blood draw.
-Blood culture hasn't proven to have too much bacteria in it (phew).
-Spinal culture is normal (phew).
-Nasal culture is normal (phew).
-Urine culture is growing like crazy! But of the four cultures they were trying to grow, this is probably the best outcome. They still don't know what it is specifically, that comes later, but the infection looks to have stemmed from the urine. This is so interesting to me because I can remember that when she went to the bathroom in the last few days was when she was feeling the best.
They want to check the cultures one more time, so we will be going home this evening or tomorrow morning if everything continues to improve.
Thanks everyone for your thoughts, prayers and fastings. My daddy (who is diabetic) even fasted and was all shaky and sweaty before he broke it. I know it's sacrifices like this that really turn the Lord's ear, head, heart, whatever. Thank you, thank you, thank you.
Love,
-Nick, deb, Claire and M#2 (Monster #2)
Anthony, Camilla and Miles stopped by last night with a doctor's kit for Claire. It had a stethoscope in it. What an idea! She wasn't nearly as spooked of that this morning! Miles was a riot! He was so happy. A nice change.
It was not as hard to leave her last night to go to sleep because she had been so whiny all day. I was ready for a break.
She slept like a log. When they came in to inject her antibiotics, she went right back to sleep. Not a peep. Not even after they drew blood at 4am. Nick held her tight. She didn't scream or fight like she has before.
I got a call at about 630am to tell me that her potassium was looking high and that the doctor would like another blood draw...sigh. So, at about 7:30, we did another one. She had a few shouts to the mean ladies poking her again from her sleep, but one tear and she was done.
She's been itching like crazy. We finally had to cover every body part we could so that she wouldn't be able to itch as easily. She drew blood a couple of times. Benadryl doesn't help. There was even an anti-itch med in her IV, but it hasn't touched it. I'm sure a bath will help, but that's not allowed until she has no IV.
Doctor Stevens came in about 8:30 with the results:
-CRP (the inflammatory one) is down to an 8. They feel confident that it will continue to drop.
-White blood cells are normal from this morning's blood draw.
-Blood culture hasn't proven to have too much bacteria in it (phew).
-Spinal culture is normal (phew).
-Nasal culture is normal (phew).
-Urine culture is growing like crazy! But of the four cultures they were trying to grow, this is probably the best outcome. They still don't know what it is specifically, that comes later, but the infection looks to have stemmed from the urine. This is so interesting to me because I can remember that when she went to the bathroom in the last few days was when she was feeling the best.
They want to check the cultures one more time, so we will be going home this evening or tomorrow morning if everything continues to improve.
Thanks everyone for your thoughts, prayers and fastings. My daddy (who is diabetic) even fasted and was all shaky and sweaty before he broke it. I know it's sacrifices like this that really turn the Lord's ear, head, heart, whatever. Thank you, thank you, thank you.
Love,
-Nick, deb, Claire and M#2 (Monster #2)
Tuesday, April 20, 2010
blessings...
Thank you to everyone that has sent your thoughts and prayers. We really appreciate them. Especially Claire. Here are just a few of the stories that we have heard of so far:
-A priesthood blessing from Daddy and Heavenly Father.
-Grampa Bill in the car ready to come up within about two minutes of the conversation. Had to convince him there was nothing he could do to help.
-Grampa Bill instead called all Mathews kids to ask them to fast and pray.
-Grammie Krista sent balloons---right after all the initial pokes and pods, she saw a nurse walk in with balloons. She was still so sick and lethargic, but she pepped up for a second: "Balloons!" and reached her hand out for them. She would only watch "MeNo" (Nemo) and hold her balloons all day yesterday.
-Grammie Krista and Grumpy Matt offered to come out.
-Grammie Krista and Grumpy Matt called the Sorensen family to ask for fasting and prayers. We heard word that we are even receiving prayers from a family in a worse situation than we've ever thought possible. Thanks for your blessings, Jeff and family.
-Lauren and David are praying
-Becky and Adam are praying
-Luke and Amy are praying (even after we almost infected their precious kids)
-Grandma Rosi and Grampa Bill are fasting and praying
-Grammie Krista and Grumpy Matt are fasting and praying
-Crystal Burke is praying
-GGrandma Claudia and GGrampa Dennis are praying
-Ben and Tamme are praying
-Camilla and Anthony are bringing dinner (even after their son shared cookies---well, he stole them right out of her hand, te he---with Claire on Saturday!)
-Greg offered to come and help out.
-A priesthood blessing from Daddy and Heavenly Father.
-Grampa Bill in the car ready to come up within about two minutes of the conversation. Had to convince him there was nothing he could do to help.
-Grampa Bill instead called all Mathews kids to ask them to fast and pray.
-Grammie Krista sent balloons---right after all the initial pokes and pods, she saw a nurse walk in with balloons. She was still so sick and lethargic, but she pepped up for a second: "Balloons!" and reached her hand out for them. She would only watch "MeNo" (Nemo) and hold her balloons all day yesterday.
-Grammie Krista and Grumpy Matt offered to come out.
-Grammie Krista and Grumpy Matt called the Sorensen family to ask for fasting and prayers. We heard word that we are even receiving prayers from a family in a worse situation than we've ever thought possible. Thanks for your blessings, Jeff and family.
-Lauren and David are praying
-Becky and Adam are praying
-Luke and Amy are praying (even after we almost infected their precious kids)
-Grandma Rosi and Grampa Bill are fasting and praying
-Grammie Krista and Grumpy Matt are fasting and praying
-Crystal Burke is praying
-GGrandma Claudia and GGrampa Dennis are praying
-Ben and Tamme are praying
-Camilla and Anthony are bringing dinner (even after their son shared cookies---well, he stole them right out of her hand, te he---with Claire on Saturday!)
-Greg offered to come and help out.
the size of a quarter...
Something fun about Nick is that he does not do bees/flying insects. He always gets stung. If there are 40 bees in the vicinity: I do not get stung once, he is stung three or four times. Then they swell up more than I can describe. It's ridiculous. Maybe his blood has an attractant in it. My guess would be all the soda---it makes his blood run more sugary. te he.
Anyway because of this nature, he lets me deal with the bugs. I am glad to help out.
Yesterday, Claire and I were at the hospital. I beginning to notice that Claire was walking more, getting into things, anxious to move around. Generally starting to drive me crazy because she almost pulled her IV out on more occasions than I can count. Nick calls us from home. He had to get to a meeting and went home to change.
Nick: Between the window and the two plants you have in the kitchen window, there is the biggest, most disgusting, bumble bee I have ever seen.
deb: Okay
I'm sitting there thinking that hmmmmm...Nick is not going to just let it be for me to take care of later because he doesn't want it to come after him, nor does he want to leave and let it be free and him unable to locate it later. Meaning: Nick is going to have to do SOMETHING to the insect.
deb: put it under a cup and I'll deal with it later.
Nick: It won't fit!
deb: it's that big?
Nick: It's the biggest bee I've ever seen in my life!
deb: so it won't fit under a cup?
Nick: I don't think I could position the cup in a way to catch it.
deb: use the salad tongs to move it.
Nick: Ah! I'd do better with a fork and I'm not getting that close to it! It's gotta be the size of a quarter! and it has two colors on it's back! A gold and a yellowish.
deb: Okay....
Nick: I know, I'll vacuum it up!
deb: yeah, you could do that.
*hear Nick getting the vacuum out, plugging it in, running it...
Nick: Here kitty, kitty, kitty...
ummm...okay...I'm dying here. I mean, is he really calling that thing a cat!? is he really trying to get it to come to him by calling to it as if it were!?
deb: *trying to restrain laughter*
Nick: Wait! I need to put the extension on it. Make it as long as possible, so I don't have to be as close!
*hears Nick turning off the vacuum, putting on the extension, etc.
Turns it back on.
Nick: Here kitty, kitty, kitty...
Wait! I have to do this the right way. I should take a picture of this thing! No, I should record this thing!
*Turns off the vacuum and gets his camera phone out. Totally starts recording....explains the entire journey to this point and then proceeds to the finale: the sucking up of the bug.
Nick: Here kitty, kitty, kitty...*Sucking large insect up noises* Now, I stick the vacuum in the bathroom, close the door and it's ready for deb. *signs off on his camera phone*
deb: *dying of laughter*
Nick: WAIT! I can't find it! Can it climb back out? Like up the hose?
deb: uhhhhh...possibly...I don't know.
Nick: AGH! What should I do? Oh, I know...I'll stick the hose in a thing of water, so if it does crawl back up it'll drown. *sink noises* That's better. K, Wiffy, it's all ready for you.
*a few hours pass and I trade Nick: I'm at home teaching voice and he's with Claire*
I walk into the bathroom to find the vacuum with the hose in a sink full of water. I'm laughing to myself as I pull the vacuum away. Guess what else I do at the same time....Yep, you guessed it. I turned it on by accident...inadvertently sucking up the sink full of water! This vacuum is not designed to house water, so it sprays everywhere! Genius! That was a fun clean up. And I never did actually see this thing. But, in a stressful week, it's great to have a guy like Nick to make me laugh. Hope it made you laugh, too. Apparently this video is on his facebook account. You'll have to check it out.
Anyway because of this nature, he lets me deal with the bugs. I am glad to help out.
Yesterday, Claire and I were at the hospital. I beginning to notice that Claire was walking more, getting into things, anxious to move around. Generally starting to drive me crazy because she almost pulled her IV out on more occasions than I can count. Nick calls us from home. He had to get to a meeting and went home to change.
Nick: Between the window and the two plants you have in the kitchen window, there is the biggest, most disgusting, bumble bee I have ever seen.
deb: Okay
I'm sitting there thinking that hmmmmm...Nick is not going to just let it be for me to take care of later because he doesn't want it to come after him, nor does he want to leave and let it be free and him unable to locate it later. Meaning: Nick is going to have to do SOMETHING to the insect.
deb: put it under a cup and I'll deal with it later.
Nick: It won't fit!
deb: it's that big?
Nick: It's the biggest bee I've ever seen in my life!
deb: so it won't fit under a cup?
Nick: I don't think I could position the cup in a way to catch it.
deb: use the salad tongs to move it.
Nick: Ah! I'd do better with a fork and I'm not getting that close to it! It's gotta be the size of a quarter! and it has two colors on it's back! A gold and a yellowish.
deb: Okay....
Nick: I know, I'll vacuum it up!
deb: yeah, you could do that.
*hear Nick getting the vacuum out, plugging it in, running it...
Nick: Here kitty, kitty, kitty...
ummm...okay...I'm dying here. I mean, is he really calling that thing a cat!? is he really trying to get it to come to him by calling to it as if it were!?
deb: *trying to restrain laughter*
Nick: Wait! I need to put the extension on it. Make it as long as possible, so I don't have to be as close!
*hears Nick turning off the vacuum, putting on the extension, etc.
Turns it back on.
Nick: Here kitty, kitty, kitty...
Wait! I have to do this the right way. I should take a picture of this thing! No, I should record this thing!
*Turns off the vacuum and gets his camera phone out. Totally starts recording....explains the entire journey to this point and then proceeds to the finale: the sucking up of the bug.
Nick: Here kitty, kitty, kitty...*Sucking large insect up noises* Now, I stick the vacuum in the bathroom, close the door and it's ready for deb. *signs off on his camera phone*
deb: *dying of laughter*
Nick: WAIT! I can't find it! Can it climb back out? Like up the hose?
deb: uhhhhh...possibly...I don't know.
Nick: AGH! What should I do? Oh, I know...I'll stick the hose in a thing of water, so if it does crawl back up it'll drown. *sink noises* That's better. K, Wiffy, it's all ready for you.
*a few hours pass and I trade Nick: I'm at home teaching voice and he's with Claire*
I walk into the bathroom to find the vacuum with the hose in a sink full of water. I'm laughing to myself as I pull the vacuum away. Guess what else I do at the same time....Yep, you guessed it. I turned it on by accident...inadvertently sucking up the sink full of water! This vacuum is not designed to house water, so it sprays everywhere! Genius! That was a fun clean up. And I never did actually see this thing. But, in a stressful week, it's great to have a guy like Nick to make me laugh. Hope it made you laugh, too. Apparently this video is on his facebook account. You'll have to check it out.
go bye bye?
I've had so many people ask and want to know so many details. Thanks for your care and concern. We are doing alright (except for my hormonal state). Claire is...Claire. Cute as can be.
Here's the story:
Tuesday morning, Claire decided that it was necessary to wear her 'fishy' swimsuit. She loves Finding Nemo and her Aunt Marlies gave her a swimsuit with orange fish on it. So, I am helping her put on her 'on-dge (orange) bath sssssooot' when I notice a huge rash that is solid red from the top of her diaper to the base of her neck. She doesn't seem bothered about it, so I don't make a big deal of it.
Next, she says 'bubbles? bath?' So, we put her in the bath tub, in her swim suit, with bubbles.
She plays merrily and continues this adorable routine for the rest of the day. I am thinking of possible causes for this ridiculous rash. My instinct was to call my mother. She was in school, so every bit as good is to call my mother-in-law. I suspected something, but I wanted to be sure. Immediately after describing it to Krista, she said, "it sounds like Rosiola." Which was exactly what I was suspicious of. Claire had been exposed about 3 months before, and they say that symptoms take about 6 weeks to 2 months to appear. So, I just figured it was still probably it. I called Nick, he looked up the symptoms and we decided that it was probably that.
The rash grew (which it was said it would do, so no surprise). And grew...and grew....AND GREW! By Thursday, it covered her from head to toe. It was not a few bumps, it was a sheet of red with a few HUGE spots on her limbs. I noticed that she was warm, and checked her temperature: 102.1 F Okay, time to call the doctor. I didn't want to take her in needlessly, but I was concerned. I wanted to talk to the nurse (and I had called before, but had been told that they couldn't give out medical advice over the phone---dang society that has way too many issues suing others!). She said the same thing, but we decided that it might be worth it just to confirm MY diagnosis.
Doctor Stevens took one look and said: Hives. What have you changed in the last week?Absolutely nothing. She'd been around a few new dogs, we had a different scent of laundry detergent but same brand, no new foods. Nothing. Nada. I went home with advice to give her Benydril and Motrin for the fever. She was still cheerful and wonderful Claire.
Friday she became a little more clingy, ate less. My sister in law Amy watched her while I helped my mom at school in Orem. She said the same things. She slept for a LONG time for her nap.
Saturday she was super fussy. We traveled home from Orem area and Claire screamed almost the whole ride. I about died. At points, I would try and talk to her about her favorite colors, animals, sing, whatever. Other times I turned up the music to drown her out. She would scream louder. I would increase the volume, she would increase her volume...and on and on, over and over. Got her home, she wouldn't eat much and asked for water, water, water.
Sunday was worse. She was lethargic and wouldn't drink AT ALL. let alone eat. Debated over and over whether to take her to Instacare or not. Took her temperature: 102.9 F, called the on call doctor three times, she refused to even take her medicine and when forced, would barf it back up, wouldn't put pressure on her legs without screaming, took two LONG naps, rash had changed to a neon red color and was more splotchy, fussed constantly, wouldn't drink, legs so swollen they would shake. First doctor (well, nurse...I wasn't allowed to talk to the doctor directly) said she wouldn't die from hives. Bring her in tomorrow. Second doctor (well a good family friend that is really a nurse) said take her in. Instacare was closed, didn't really want to go to the ER so called the on call ped one last time: if she has had a wet diaper, you can wait until tomorrow and take her to your doc first thing. She hadn't had one, but while the doc and Nick talked, she did have one. So, we waited until Monday. I was so worried about her dehydration that anytime she woke up in the night, I would force feed her ice chips. Screamed bloody murder, but would eat them.
Monday we took her in ASAP. We really like our doctor. He's young and doesn't mind asking for second opinions from other docs. LOVE that. They conferred and decided that she needed to be tested for a few things. And she needed to be re hydrated. Nothing for sure, but we better take her to the hospital and admit her. She was exhausted, but of course had to be poked and prodded from the second we walked in. She screamed bloody murder for hours and hours. Wouldn't sleep. Blood work came back and doc decided that because her blood work was so
'concerning' that we needed to do a lumbar puncture to rule out/in spinal meningitis. I about died. From Rosiola to hives to meningitis in a week.
Nick and I held her and talked to her the whole lumbar puncture. I about died (did I already say that? cause I really did). She screamed so hard. She was so upset with the doc and nurses that now she screams whenever they come in, regardless of shift changes. She was soooooo good though. I would talk to her and ask her about cows and she would say "AHHHHHHHHHHH MOOOOOOO AHHHHHHHHHH!" or what color was this or that, "AHHHHHHHHHHHHH On dge! AHHHHHHHHHH!" or Tell me about Jesus, C. "AHHHHHHHHHHH! Gee-sahs! AHHHHHHHHHHHH!" She is amazing. I'm so blessed to be her momma.
We left her at 9pm to sleep (she does NOT sleep with people in the room with her, or when they walk in....however, she sleeps like 10.5 hours at night, so I am fine with those issues). She screamed for a 1/2 hour and slept until the noisy CNA and nurse came in to do vitals around 1am. Nick was the lucky and loving parent who stayed the night. Claire's monitors would keep going off and wake her up because the noisy CNA would barge in, turn on the lights and try and fix things. GRRRRRR! I had already described to these women how Claire needed to sleep---LET HER SLEEP, please. Then 5am rolled around and it was time for another blood draw. She was a trooper, of course. Nick held her hand and she screamed.
This morning we walked into a room with a poopy blown out diaper that she was sleeping in (how do you poop when there's nothing in you??? 3 times!?) Doctor said that her CRP (which is an inflammatory level---gauges how ill you are) is supposed to be at about 0.8. When Claire was in the NICU, it was (at it's highest) at a 3. Yesterday's blood/lumbar work put her at a 28, but the lumbar cultures are not showing signs of bacteria. So, this is not (most likely---we have to wait 48 hours to be sure) bacterial caused spinal meningitis, but something else. Viral meningitis is suspected, but so are many, many things. Her blood cultures are concerning, so are her urine cultures. I guess we'll see.
She is up and walking for about 10 steps at a time before she falls over. She wants to go home. "Go bye bye?", "home?" It kills me every time. Right now, I'm waiting in the cafeteria while she sleeps (I'm hoping). Nick is at work for a few hours. And I wish this was all over.
My kid is amazing. I don't know what I would do without her. I'm so grateful that she is mine. Even when I get impatient enough to turn up the radio to drown her out (which is terrible, ESPECIALLY because I know now that she is sensitive to light and sound). I pray for her to forget this quickly. I pray for her to be healthy. I pray for my nerves---especially because I was scared to death we had passed meningitis on to so many people! Not to mention being prego would not be a good time to have meningitis myself.
We a grateful for all those who have been thinking about us, praying for us, fasting for her. God bless you.
We'll keep you updated.
Here's the story:
Tuesday morning, Claire decided that it was necessary to wear her 'fishy' swimsuit. She loves Finding Nemo and her Aunt Marlies gave her a swimsuit with orange fish on it. So, I am helping her put on her 'on-dge (orange) bath sssssooot' when I notice a huge rash that is solid red from the top of her diaper to the base of her neck. She doesn't seem bothered about it, so I don't make a big deal of it.
Next, she says 'bubbles? bath?' So, we put her in the bath tub, in her swim suit, with bubbles.
She plays merrily and continues this adorable routine for the rest of the day. I am thinking of possible causes for this ridiculous rash. My instinct was to call my mother. She was in school, so every bit as good is to call my mother-in-law. I suspected something, but I wanted to be sure. Immediately after describing it to Krista, she said, "it sounds like Rosiola." Which was exactly what I was suspicious of. Claire had been exposed about 3 months before, and they say that symptoms take about 6 weeks to 2 months to appear. So, I just figured it was still probably it. I called Nick, he looked up the symptoms and we decided that it was probably that.
The rash grew (which it was said it would do, so no surprise). And grew...and grew....AND GREW! By Thursday, it covered her from head to toe. It was not a few bumps, it was a sheet of red with a few HUGE spots on her limbs. I noticed that she was warm, and checked her temperature: 102.1 F Okay, time to call the doctor. I didn't want to take her in needlessly, but I was concerned. I wanted to talk to the nurse (and I had called before, but had been told that they couldn't give out medical advice over the phone---dang society that has way too many issues suing others!). She said the same thing, but we decided that it might be worth it just to confirm MY diagnosis.
Doctor Stevens took one look and said: Hives. What have you changed in the last week?Absolutely nothing. She'd been around a few new dogs, we had a different scent of laundry detergent but same brand, no new foods. Nothing. Nada. I went home with advice to give her Benydril and Motrin for the fever. She was still cheerful and wonderful Claire.
Friday she became a little more clingy, ate less. My sister in law Amy watched her while I helped my mom at school in Orem. She said the same things. She slept for a LONG time for her nap.
Saturday she was super fussy. We traveled home from Orem area and Claire screamed almost the whole ride. I about died. At points, I would try and talk to her about her favorite colors, animals, sing, whatever. Other times I turned up the music to drown her out. She would scream louder. I would increase the volume, she would increase her volume...and on and on, over and over. Got her home, she wouldn't eat much and asked for water, water, water.
Sunday was worse. She was lethargic and wouldn't drink AT ALL. let alone eat. Debated over and over whether to take her to Instacare or not. Took her temperature: 102.9 F, called the on call doctor three times, she refused to even take her medicine and when forced, would barf it back up, wouldn't put pressure on her legs without screaming, took two LONG naps, rash had changed to a neon red color and was more splotchy, fussed constantly, wouldn't drink, legs so swollen they would shake. First doctor (well, nurse...I wasn't allowed to talk to the doctor directly) said she wouldn't die from hives. Bring her in tomorrow. Second doctor (well a good family friend that is really a nurse) said take her in. Instacare was closed, didn't really want to go to the ER so called the on call ped one last time: if she has had a wet diaper, you can wait until tomorrow and take her to your doc first thing. She hadn't had one, but while the doc and Nick talked, she did have one. So, we waited until Monday. I was so worried about her dehydration that anytime she woke up in the night, I would force feed her ice chips. Screamed bloody murder, but would eat them.
Monday we took her in ASAP. We really like our doctor. He's young and doesn't mind asking for second opinions from other docs. LOVE that. They conferred and decided that she needed to be tested for a few things. And she needed to be re hydrated. Nothing for sure, but we better take her to the hospital and admit her. She was exhausted, but of course had to be poked and prodded from the second we walked in. She screamed bloody murder for hours and hours. Wouldn't sleep. Blood work came back and doc decided that because her blood work was so
'concerning' that we needed to do a lumbar puncture to rule out/in spinal meningitis. I about died. From Rosiola to hives to meningitis in a week.
Nick and I held her and talked to her the whole lumbar puncture. I about died (did I already say that? cause I really did). She screamed so hard. She was so upset with the doc and nurses that now she screams whenever they come in, regardless of shift changes. She was soooooo good though. I would talk to her and ask her about cows and she would say "AHHHHHHHHHHH MOOOOOOO AHHHHHHHHHH!" or what color was this or that, "AHHHHHHHHHHHHH On dge! AHHHHHHHHHH!" or Tell me about Jesus, C. "AHHHHHHHHHHH! Gee-sahs! AHHHHHHHHHHHH!" She is amazing. I'm so blessed to be her momma.
We left her at 9pm to sleep (she does NOT sleep with people in the room with her, or when they walk in....however, she sleeps like 10.5 hours at night, so I am fine with those issues). She screamed for a 1/2 hour and slept until the noisy CNA and nurse came in to do vitals around 1am. Nick was the lucky and loving parent who stayed the night. Claire's monitors would keep going off and wake her up because the noisy CNA would barge in, turn on the lights and try and fix things. GRRRRRR! I had already described to these women how Claire needed to sleep---LET HER SLEEP, please. Then 5am rolled around and it was time for another blood draw. She was a trooper, of course. Nick held her hand and she screamed.
This morning we walked into a room with a poopy blown out diaper that she was sleeping in (how do you poop when there's nothing in you??? 3 times!?) Doctor said that her CRP (which is an inflammatory level---gauges how ill you are) is supposed to be at about 0.8. When Claire was in the NICU, it was (at it's highest) at a 3. Yesterday's blood/lumbar work put her at a 28, but the lumbar cultures are not showing signs of bacteria. So, this is not (most likely---we have to wait 48 hours to be sure) bacterial caused spinal meningitis, but something else. Viral meningitis is suspected, but so are many, many things. Her blood cultures are concerning, so are her urine cultures. I guess we'll see.
She is up and walking for about 10 steps at a time before she falls over. She wants to go home. "Go bye bye?", "home?" It kills me every time. Right now, I'm waiting in the cafeteria while she sleeps (I'm hoping). Nick is at work for a few hours. And I wish this was all over.
My kid is amazing. I don't know what I would do without her. I'm so grateful that she is mine. Even when I get impatient enough to turn up the radio to drown her out (which is terrible, ESPECIALLY because I know now that she is sensitive to light and sound). I pray for her to forget this quickly. I pray for her to be healthy. I pray for my nerves---especially because I was scared to death we had passed meningitis on to so many people! Not to mention being prego would not be a good time to have meningitis myself.
We a grateful for all those who have been thinking about us, praying for us, fasting for her. God bless you.
We'll keep you updated.
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