This has been a rough week for Ellie.
She has been waking up most mornings with a high heartrate (115ish) and often a fever (98ish). Acetaminophen seems to be doing a better job the ibuprofen of bringing down the heartrate and fever. Once it comes down, it doesn't seem to go back up (mostly).
She has been in pain, grimacing and grinding her teeth and she has been taking naps which is unusual for her.
Early in the week (last week) I had the Dr. call and we did blood and urine tests. Everything was normal.
Friday she was still having problems and I thought I was going to take her down to PCMC, but she calmed down and I took her to her pediatrician instead. More blood and urine and more totally normal results. The only thing that was off was her potassium was a little low.
She finished up the antibiotic for the UTI on Sunday night and seems to be doing a little better since then, so maybe she didn't like that kind of antibiotic.
We'll see. I still feel like she is still a little off.
Monday, June 24, 2013
Thursday, June 20, 2013
Eleven
Today was Ellie's eleventh birthday.
I am truly amazed and humbled by this.
We were told before she was born that she could be #1)stillborn or #2)die in the first year or #3)if she lived she would be severely disabled or #4)there was the possibility she could live a normal life. We were given the option of aborting. (Which we never considered for a moment).
I cannot believe what she and we have accomplished in 11 years.
The HARDEST and MOST REWARDING 11 years of my life to date.
I always say that I would not wish having a child with disabilities on my worst enemy and yet I would not trade it for anything in the world. I know that sounds terrible. But guess what...it's hard. And guess what else...I love Ellie and I love the things I have learned from her and the experiences which have been literally forced upon me.
This was a really hard birthday for me because one time when Ellie was little Jason and I tried to guess how long we thought she would "make it" before we lost her. We thought either 8 or 11. And it still could happen of course, but it was really hard to accept her turning 11. (I know silly...from some silly postulating with no basis for fact...but life and feelings don't always make sense.)
I call this her medical blog, but I probably need to brag a bit about her accomplishments...
She can do many signs (with her arms, fingers, legs, head, eyes, facial expressions)
She knows her name
She knows familiar people and places
She can request more or finished
She can use a switch to control toys or her environment
She can control a computer mouse with her eyes
She can make choices with objects or pictures or the computer
She knows her colors by color, or written word
She knows her body parts
She can read a few words...FOR REAL!
She can love unconditionally
She has the patience of a SAINT
She is so trusting
She is a fighter
She makes the best of every situation
She is so positive
She loves people
She has preferences
She has feelings
She is a child of God
I am truly amazed and humbled by this.
We were told before she was born that she could be #1)stillborn or #2)die in the first year or #3)if she lived she would be severely disabled or #4)there was the possibility she could live a normal life. We were given the option of aborting. (Which we never considered for a moment).
I cannot believe what she and we have accomplished in 11 years.
The HARDEST and MOST REWARDING 11 years of my life to date.
I always say that I would not wish having a child with disabilities on my worst enemy and yet I would not trade it for anything in the world. I know that sounds terrible. But guess what...it's hard. And guess what else...I love Ellie and I love the things I have learned from her and the experiences which have been literally forced upon me.
This was a really hard birthday for me because one time when Ellie was little Jason and I tried to guess how long we thought she would "make it" before we lost her. We thought either 8 or 11. And it still could happen of course, but it was really hard to accept her turning 11. (I know silly...from some silly postulating with no basis for fact...but life and feelings don't always make sense.)
I call this her medical blog, but I probably need to brag a bit about her accomplishments...
She can do many signs (with her arms, fingers, legs, head, eyes, facial expressions)
She knows her name
She knows familiar people and places
She can request more or finished
She can use a switch to control toys or her environment
She can control a computer mouse with her eyes
She can make choices with objects or pictures or the computer
She knows her colors by color, or written word
She knows her body parts
She can read a few words...FOR REAL!
She can love unconditionally
She has the patience of a SAINT
She is so trusting
She is a fighter
She makes the best of every situation
She is so positive
She loves people
She has preferences
She has feelings
She is a child of God
Friday, June 14, 2013
We are home
We came home yesterday...
on antibiotics for the UTI and now cathing a minimum of twice a day (at least for a while). Our regular pharmacy wouldhave to special order the antibiotic and it wouldn't be here until Monday, so we have to go to McKay Dee hospital to get it filled...and they don't have a drive through. Don't you think all pharmacies should be REQUIRED to have a drive through. I do! Along with dry cleaners, red box, grocery stores, pizza places, etc. Basically I think every store and every business needs a drive through. Let's start a petition!
They think the spasming last time was either an enlarged bladder or pancreatitis. They think this time it was the UTI. I don't know that I fully buy this theory, but there were no other tests to run so this was their best guess.
I hate the hospital stays when they have no answers and just keep you there until you are so worn out that you are begging to go home whether you have answers or not. And that's what it felt like this time. I am worn out and need a day or two to recuperate. I feel like we will be back there with the same symptoms in another month because we didn't truly figure it out.
She had an elevated heartrate for 2 weeks prior to this, which we blamed on other things. So the lesson to be learned is that even if you think there is a reason for the elevated heartrate I should still take in a urine sample and or request blood work...even if elevated heartrate is the only symptom. Because she got soooo bad sooo fast. The UTI was all the way in to her kidneys. There was no kidney damage this time, but if it repeatedly happens there can be.
We changed from lactulose to Milk of magnesia for her bowel program since the free air could have been caused by the lactulose. I need to have her magnesium levels checked in 6 weeks.
I actually think she's had the UTI basically since last hospital stay and that is why we were only getting out 150-200 mL when cathing her. Last night I got 525mL and this morning I got 750mL. FYI 750mL is 3.25 cups and 4.25 C= 1 liter
on antibiotics for the UTI and now cathing a minimum of twice a day (at least for a while). Our regular pharmacy wouldhave to special order the antibiotic and it wouldn't be here until Monday, so we have to go to McKay Dee hospital to get it filled...and they don't have a drive through. Don't you think all pharmacies should be REQUIRED to have a drive through. I do! Along with dry cleaners, red box, grocery stores, pizza places, etc. Basically I think every store and every business needs a drive through. Let's start a petition!
They think the spasming last time was either an enlarged bladder or pancreatitis. They think this time it was the UTI. I don't know that I fully buy this theory, but there were no other tests to run so this was their best guess.
I hate the hospital stays when they have no answers and just keep you there until you are so worn out that you are begging to go home whether you have answers or not. And that's what it felt like this time. I am worn out and need a day or two to recuperate. I feel like we will be back there with the same symptoms in another month because we didn't truly figure it out.
She had an elevated heartrate for 2 weeks prior to this, which we blamed on other things. So the lesson to be learned is that even if you think there is a reason for the elevated heartrate I should still take in a urine sample and or request blood work...even if elevated heartrate is the only symptom. Because she got soooo bad sooo fast. The UTI was all the way in to her kidneys. There was no kidney damage this time, but if it repeatedly happens there can be.
We changed from lactulose to Milk of magnesia for her bowel program since the free air could have been caused by the lactulose. I need to have her magnesium levels checked in 6 weeks.
I actually think she's had the UTI basically since last hospital stay and that is why we were only getting out 150-200 mL when cathing her. Last night I got 525mL and this morning I got 750mL. FYI 750mL is 3.25 cups and 4.25 C= 1 liter
Wednesday, June 12, 2013
Starting feeds
So yesterday they started slow and worked up on giving her pedialyte. Her spasms started up badly again. I asked them to turn off the feeds for a while. They didn't want to, but did anyway. The spasms got slightly better, but did not go away. We restarted the pedialyte. Today we will be slowly adding her regular formula into the equation and getting her up to her full home feeds.
Last night she dropped her body temp to 90 F. and her heartrate to the high 40s. This is much more normal and she hasn't done this for quite a while, so to me this is a sign that she is getting better. They sent the Dr. in and she was worried that her heartrate had dropped into the 40's, a told her it was normal and I was not worried. (It doesn't drop into the 40's too often...but it is not unheard of. Usually I catch it before it gets quite that severe, but I guess I think I'm on vacation here with someone else watching her). We got the baer hugger warming blanket and warmed her up. It took maybe an hour and a half.
Yesterday she seemed "on edge", ready to have a seizure all day, her eyes were just not quite as stable as they typically are. Last night she had twice where she dropped her oxygen while already on bipap and oxygen. We have learned that these are siezures. There is nothing you can do to improve her oxygen. Even though the bipap is on and is delivering breaths of air to her, her chest does not rise and fall. You can try repositioning her, raising her chin, turning up the oxygen, suctioning...it doesn't matter...her oxygen stays low (typically in the 70's but sometimes lower) and then all of a sudden it immediately pops up to the high 90's where it should be. The nurses kind of freak out because it is kind of long...5-10 minutes...but they trusted me and didn't push the code blue button. Even if they pushed the code blue button they would treat it all wrong. They would want to bag her (push air into her lungs) and intubate her (put a breathing tube in), when what would actually help would be giving her ativan or diastat (emergency seizure meds) to stop the seizure. But if you can just not freak out and be patient, then she will come out of it and be fine.
Yesterday when I talked with urology he said that we were going to cath her twice a day, but he didn't sa anything about doing bladder scans. Well I woke up in the middle of the night with 3 nurses around Ellie and the are doing a bladder scan--in the middle of the night--that I didn't even know they were going to be doing at all. I kind of groggily got mad at them and told them that she doesn't pee during the night. They said the Dr. had ordered bladder scans every 6 hours. The nurse and I talked this morning and they are going to talk to urology and have them say not to do the bladder scans during the night. Because I am not going to be getting up in the middle of the night and cathing her, so why scan her bladder during the night?
This morning when I woke up and looked at her monitors her heartrate was at 130 whereas yesterday it was in the 70's or 80's. I jumped out of bed and ripped her blankets off. I took her temp and it was at 99 F (very hot for her). I was upset with the nurses if her heartrate is elevated I immediately think her temperature is up, but even if you didn't think that you should think pain. So either do something about it, or wake up Mom and consult. They did nothing. I calmly called the nurses in and told them (once again) that her heartrate and temperature are best friends...if one goes up they both go up, if one goes down they both go down. So if I see a heartrate of 130 I know she is really hot and her blankets should have been taken off and her temperature should have been taken. I asked them to please make sure this message gets passed on tot eh next nurses. They said they didn't know and they would make sure the message got passed along. It would be one thing if I hadn't told one of the previous nurses, but I had...the message just got lost along the way. So now she is stripped down and cooling off.
She is awake and alert and doing well this morning. I have seen her stomach spasm on it's own just a bit, but not much, but it still does it if you touch her stomach.
Her urine looked light and normal.
They are going to switch her antibiotic to another one that the culture results seemed to respond to better.
I am hopeful that we will go home tomorrow (Thurs).
Last night she dropped her body temp to 90 F. and her heartrate to the high 40s. This is much more normal and she hasn't done this for quite a while, so to me this is a sign that she is getting better. They sent the Dr. in and she was worried that her heartrate had dropped into the 40's, a told her it was normal and I was not worried. (It doesn't drop into the 40's too often...but it is not unheard of. Usually I catch it before it gets quite that severe, but I guess I think I'm on vacation here with someone else watching her). We got the baer hugger warming blanket and warmed her up. It took maybe an hour and a half.
Yesterday she seemed "on edge", ready to have a seizure all day, her eyes were just not quite as stable as they typically are. Last night she had twice where she dropped her oxygen while already on bipap and oxygen. We have learned that these are siezures. There is nothing you can do to improve her oxygen. Even though the bipap is on and is delivering breaths of air to her, her chest does not rise and fall. You can try repositioning her, raising her chin, turning up the oxygen, suctioning...it doesn't matter...her oxygen stays low (typically in the 70's but sometimes lower) and then all of a sudden it immediately pops up to the high 90's where it should be. The nurses kind of freak out because it is kind of long...5-10 minutes...but they trusted me and didn't push the code blue button. Even if they pushed the code blue button they would treat it all wrong. They would want to bag her (push air into her lungs) and intubate her (put a breathing tube in), when what would actually help would be giving her ativan or diastat (emergency seizure meds) to stop the seizure. But if you can just not freak out and be patient, then she will come out of it and be fine.
Yesterday when I talked with urology he said that we were going to cath her twice a day, but he didn't sa anything about doing bladder scans. Well I woke up in the middle of the night with 3 nurses around Ellie and the are doing a bladder scan--in the middle of the night--that I didn't even know they were going to be doing at all. I kind of groggily got mad at them and told them that she doesn't pee during the night. They said the Dr. had ordered bladder scans every 6 hours. The nurse and I talked this morning and they are going to talk to urology and have them say not to do the bladder scans during the night. Because I am not going to be getting up in the middle of the night and cathing her, so why scan her bladder during the night?
This morning when I woke up and looked at her monitors her heartrate was at 130 whereas yesterday it was in the 70's or 80's. I jumped out of bed and ripped her blankets off. I took her temp and it was at 99 F (very hot for her). I was upset with the nurses if her heartrate is elevated I immediately think her temperature is up, but even if you didn't think that you should think pain. So either do something about it, or wake up Mom and consult. They did nothing. I calmly called the nurses in and told them (once again) that her heartrate and temperature are best friends...if one goes up they both go up, if one goes down they both go down. So if I see a heartrate of 130 I know she is really hot and her blankets should have been taken off and her temperature should have been taken. I asked them to please make sure this message gets passed on tot eh next nurses. They said they didn't know and they would make sure the message got passed along. It would be one thing if I hadn't told one of the previous nurses, but I had...the message just got lost along the way. So now she is stripped down and cooling off.
She is awake and alert and doing well this morning. I have seen her stomach spasm on it's own just a bit, but not much, but it still does it if you touch her stomach.
Her urine looked light and normal.
They are going to switch her antibiotic to another one that the culture results seemed to respond to better.
I am hopeful that we will go home tomorrow (Thurs).
Tuesday, June 11, 2013
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Video of her shivery/shake (spasms)
This is a video of her shivery/shake (spasms). We don't know if it's bladder, bowels, or stomach.
Pics of Appendectomy incisions
She has 3 incisions from her appendectomy...one in her belly button, one up higher on the right and one down lower just slightly to the right.
They started giving her pedialyte through her g-tube last night, slowly increasing every few hours. This morning her stomach is spasming again. Grrr...this may be a longer hospital stay than anticipated.
Monday, June 10, 2013
Lactulose
Gastroenterology came by and urology did also.
Urology thought for now to hold the course we have been doing. Cath her ever other day to every 3 days or so (or more often if needed). No need to switch from clean cathing to sterile cathing and no need to add an ongoing antibiotic. If she continues to get UTI's then changes will need to be made. She had 1 UTI in 2006 and 2 in 2007. So it's pretty suspicious that we start cathing and within a month she has a UTI. They do not want us to stop cathing though.
Gastroenterology thinks the pain/spasm are probably caused by the lactulose (a med to help her poop). So we will be switching to something else. Probably milk of magnesia or magnesium citrate. Either way we have to check magnesium labs for a while to make sure she isn't getting too much magnesium. They do not think that the free air would be causing the pain or spasms.
They don't know if the bladder problems and the bowel problems are related or not.
They don't have any definite answers...just more of...try this new plan and we hope we don't see you in another month.
One good tip that I will now do in the future is if her heartrate is elevated (like it has been for at least 2 weeks---but I was blaming on the provera) I need to send in a urine sample. Which lucky for me I can now do at home myself! This could probably have prevented the whole hospital stay. But I didn't know. It didn't seem like a big deal and I had another explanation for it.
Urology thought for now to hold the course we have been doing. Cath her ever other day to every 3 days or so (or more often if needed). No need to switch from clean cathing to sterile cathing and no need to add an ongoing antibiotic. If she continues to get UTI's then changes will need to be made. She had 1 UTI in 2006 and 2 in 2007. So it's pretty suspicious that we start cathing and within a month she has a UTI. They do not want us to stop cathing though.
Gastroenterology thinks the pain/spasm are probably caused by the lactulose (a med to help her poop). So we will be switching to something else. Probably milk of magnesia or magnesium citrate. Either way we have to check magnesium labs for a while to make sure she isn't getting too much magnesium. They do not think that the free air would be causing the pain or spasms.
They don't know if the bladder problems and the bowel problems are related or not.
They don't have any definite answers...just more of...try this new plan and we hope we don't see you in another month.
One good tip that I will now do in the future is if her heartrate is elevated (like it has been for at least 2 weeks---but I was blaming on the provera) I need to send in a urine sample. Which lucky for me I can now do at home myself! This could probably have prevented the whole hospital stay. But I didn't know. It didn't seem like a big deal and I had another explanation for it.
Naptime
The surgeon thinks the free air is from her bowels, but he does not think that her bowel is perforated. He just thinks she has a weak spot on her bowels like a canker sore and the air leaks out through her bowels.
There was nothing wrong with her appendix, so there was really no reason to take it out, but they were already in there, so they took it out anyway.
Last night I made a list on the board of possibilities I can think of that could be causing the shivery shakiness of her tummy.
Pain from the rods (or pulling nerves, etc...)
Pancreatitis (like they suspected last hospital stay due to the Lipase being up to 3000 instead of under 150)
Urinary Tract Infection (Which she has, but could that be causing the shaking?)
Neuropathic pain
Free air (from bowels?)
seizures
And we can now cross appendix off of the list
Yesterday her stomach was shaking pretty much non-stop, even after the appendix was out.
Today her stomach is shaking a bit, but not too bad. So maybe it was the urinary tract infection and the antibiotic is helping. But then, why was she shaking last hospital stay and there was no urinary tract infection showing up in her urine.
She was awake for a few hours, but then she got sleepy about 9 or 9:30. It doesn't worry me, she went into surgery at 10:30 last night. And I'm beat today too.
On other thoughts...we probably need a new cathing plan, a new bowel/stool plan.
Could we have caused the UTI with our cathing?
I asked about he recovery for a laparoscopic appendectomy...for a healthy adult and the appendix has not perforated it is outpatient and you could be back to work in a few days and back to full activity in a week or two (whenever you felt up to it).
There was nothing wrong with her appendix, so there was really no reason to take it out, but they were already in there, so they took it out anyway.
Last night I made a list on the board of possibilities I can think of that could be causing the shivery shakiness of her tummy.
Pain from the rods (or pulling nerves, etc...)
Pancreatitis (like they suspected last hospital stay due to the Lipase being up to 3000 instead of under 150)
Urinary Tract Infection (Which she has, but could that be causing the shaking?)
Neuropathic pain
Free air (from bowels?)
seizures
And we can now cross appendix off of the list
Yesterday her stomach was shaking pretty much non-stop, even after the appendix was out.
Today her stomach is shaking a bit, but not too bad. So maybe it was the urinary tract infection and the antibiotic is helping. But then, why was she shaking last hospital stay and there was no urinary tract infection showing up in her urine.
She was awake for a few hours, but then she got sleepy about 9 or 9:30. It doesn't worry me, she went into surgery at 10:30 last night. And I'm beat today too.
On other thoughts...we probably need a new cathing plan, a new bowel/stool plan.
Could we have caused the UTI with our cathing?
I asked about he recovery for a laparoscopic appendectomy...for a healthy adult and the appendix has not perforated it is outpatient and you could be back to work in a few days and back to full activity in a week or two (whenever you felt up to it).
Pain and more Shivery/Shaky
We are on the surgical unit.
She has slightly woken up from anesthesia, but not much. She has her bi-pap mask on.
It is 1:10 AM and I am waiting for the Dr. to come in and talk to me. We have been handed off from surgical to the pediatric team Dr.'s (hospitalists).
She is in pain and they are going to give her some more morphine. She is gritting her teeth.
Speaking of teeth, she did not lose her loose tooth (...yet).
Her stomach is also still doing the shivery/shaky thing. It looks like contractions or spasms.
She has slightly woken up from anesthesia, but not much. She has her bi-pap mask on.
It is 1:10 AM and I am waiting for the Dr. to come in and talk to me. We have been handed off from surgical to the pediatric team Dr.'s (hospitalists).
She is in pain and they are going to give her some more morphine. She is gritting her teeth.
Speaking of teeth, she did not lose her loose tooth (...yet).
Her stomach is also still doing the shivery/shaky thing. It looks like contractions or spasms.
Sunday, June 9, 2013
Laporscopically
The Surgeon (Dr. Scaife) just came out. He said she did not have a lot of scar tissue. He did not see any infection. They took the appendix out anyway. This is the best possible scenario. I do not know yet what recovery entails, or if this will solve the shivery shaky problem...probably not.
Maybe the shivery shaky is from the urinary tract infection???? Who knows at this point.
But we can't come in with her in shock next month too. We need answers.
The surgeon also took a sample of her spinal fluid from the shunt tubing (in the belly) to make sure it did not have an infection.
Maybe the shivery shaky is from the urinary tract infection???? Who knows at this point.
But we can't come in with her in shock next month too. We need answers.
The surgeon also took a sample of her spinal fluid from the shunt tubing (in the belly) to make sure it did not have an infection.
Surgery
Yes...you read that right...SURGERY!!!
Ellie is in the Operating Room right now at Primary Children's.
Let me back up a bit...
Remember about a month ago we were inpatient here at Primary's and she had some "free air" in her abdomen, then it went away? And she also had a shivery shaky tummy at the same time. And her Lipase was up perhaps suggesting that she had pancreatitis, but the gastroenterologists would never commit to the diagnosis.
So then we went home with a shivery shaky tummy and no answers.
The shivery shaky tummy went away.
One time about 2 weeks ago when I cathed her I got a spot of blood, but then I thought it might have been her special time of the month, so I started the provera.
(This was the plan, when she spots...start the provera...then she will cycle).
She has also had an increased heart-rate for the last week or 2, but I blamed it on the provera that makes her feel really yucky. (She only takes the provera every 5 or 6 months).
Then this last week the shivery shaky tummy returned for 1 day, but I thought I would wait until the next day to call the Dr. and voila, it was gone the next day. (I also thought it could have been the provera, or the time of the month making her stomach not feel good).
Well, today she was NOT FEELING GOOD AT ALL at church. I gave her ibuprofen AND acetaminophen and it did nothing to help. She was still grinding her teeth and grimacing and kicking her leg and moving her arms.
We grabbed a few things from home and headed to Primary Children's.
On the way down she was grinding and biting her teeth so much that she made her permanent tooth loose. (Front bottom right). I begged her to stop, but she just had blood running down her chin the whole drive down here and she just kept right on biting and grinding her teeth. She was in MASSIVE pain. On a scale of 1 to 10 she was at 20.
When we got here she met the criteria that she was going in to shock. (I actually didn't think she looked THAT BAD.) Her heart-rate was in the 140's (high, but I've seen it higher), she was breathing 60 breaths per minute and dropping her oxygen sats to 90, and she had a fever (even for a normal person...so that's super high for her). If you meet 3 of the criteria, then you go into "shock protocol". So she made the cut to be placed in "shock protocol". They send in a bunch of nurses to help and they do an IV, blood, urine, vitals, start IV fluids, start and antibiotic, etc...all really quick. It has supposedly helped to prevent a lot of people from "crashing". I thought it was great because #1 the Dr. came in right away, #2 we got the test results pretty much immediately. I think Ellie should go in to shock every Emergency Department visit! (Okay, not really...but they were FAST!!!).
They also did urine and x-rays of her chest and abdomen.
Her blood work came back looking really quite good except the white blood cells were up just a bit. The Lipase (the number that was 3000 last time and should be under 150 and could be an indicator of pancreatitis) was in the low 200's. Other than that the bloodwork was good.
Her urine showed a definite urinary tract infection.
The x-rays showed some possible free air...are you kidding me?
So they sent her to get a CT scan to look at her appendix. The light refracted off of her rods and they could not get a good picture.
So then they tried an ultrasound to look at the appendix. They could not see it because she had gas.
So the radiologist (even though he saw nothing conclusive) really feels like it is a perforated appendix. The location of the air and a few other things makes him think this.
So they sent in general surgery. Surgery does not think it is the appendix. They said her blood would be a lot worse (especially if it tore a month ago), and they think it would look inflamed on CT and her heart-rate wouldn't have come down with the doses of morphine they gave her. But they still felt like the best choice would be to go in laporscopically through her belly button with a scope (camera) and have a look around. He is not sure if he will be able to see anything because she has so much hardware and she probably has a lot of scar tissue.
If he can't see what he needs to laporscopically, then he will need to open her up (about half of her abdomen) and have a look-see.
If they find infection, or a perforated appendix, her shunt (which drains from her head into her abdomen) will need to be removed and made into an external shunt until her belly heals, then they would go in and fix the shunt.
She went in to the OR at 10:40 PM.
Ellie is in the Operating Room right now at Primary Children's.
Let me back up a bit...
Remember about a month ago we were inpatient here at Primary's and she had some "free air" in her abdomen, then it went away? And she also had a shivery shaky tummy at the same time. And her Lipase was up perhaps suggesting that she had pancreatitis, but the gastroenterologists would never commit to the diagnosis.
So then we went home with a shivery shaky tummy and no answers.
The shivery shaky tummy went away.
One time about 2 weeks ago when I cathed her I got a spot of blood, but then I thought it might have been her special time of the month, so I started the provera.
(This was the plan, when she spots...start the provera...then she will cycle).
She has also had an increased heart-rate for the last week or 2, but I blamed it on the provera that makes her feel really yucky. (She only takes the provera every 5 or 6 months).
Well, today she was NOT FEELING GOOD AT ALL at church. I gave her ibuprofen AND acetaminophen and it did nothing to help. She was still grinding her teeth and grimacing and kicking her leg and moving her arms.
We grabbed a few things from home and headed to Primary Children's.
On the way down she was grinding and biting her teeth so much that she made her permanent tooth loose. (Front bottom right). I begged her to stop, but she just had blood running down her chin the whole drive down here and she just kept right on biting and grinding her teeth. She was in MASSIVE pain. On a scale of 1 to 10 she was at 20.
When we got here she met the criteria that she was going in to shock. (I actually didn't think she looked THAT BAD.) Her heart-rate was in the 140's (high, but I've seen it higher), she was breathing 60 breaths per minute and dropping her oxygen sats to 90, and she had a fever (even for a normal person...so that's super high for her). If you meet 3 of the criteria, then you go into "shock protocol". So she made the cut to be placed in "shock protocol". They send in a bunch of nurses to help and they do an IV, blood, urine, vitals, start IV fluids, start and antibiotic, etc...all really quick. It has supposedly helped to prevent a lot of people from "crashing". I thought it was great because #1 the Dr. came in right away, #2 we got the test results pretty much immediately. I think Ellie should go in to shock every Emergency Department visit! (Okay, not really...but they were FAST!!!).
They also did urine and x-rays of her chest and abdomen.
Her blood work came back looking really quite good except the white blood cells were up just a bit. The Lipase (the number that was 3000 last time and should be under 150 and could be an indicator of pancreatitis) was in the low 200's. Other than that the bloodwork was good.
Her urine showed a definite urinary tract infection.
The x-rays showed some possible free air...are you kidding me?
So they sent her to get a CT scan to look at her appendix. The light refracted off of her rods and they could not get a good picture.
So then they tried an ultrasound to look at the appendix. They could not see it because she had gas.
So the radiologist (even though he saw nothing conclusive) really feels like it is a perforated appendix. The location of the air and a few other things makes him think this.
So they sent in general surgery. Surgery does not think it is the appendix. They said her blood would be a lot worse (especially if it tore a month ago), and they think it would look inflamed on CT and her heart-rate wouldn't have come down with the doses of morphine they gave her. But they still felt like the best choice would be to go in laporscopically through her belly button with a scope (camera) and have a look around. He is not sure if he will be able to see anything because she has so much hardware and she probably has a lot of scar tissue.
If he can't see what he needs to laporscopically, then he will need to open her up (about half of her abdomen) and have a look-see.
If they find infection, or a perforated appendix, her shunt (which drains from her head into her abdomen) will need to be removed and made into an external shunt until her belly heals, then they would go in and fix the shunt.
She went in to the OR at 10:40 PM.
Saturday, May 18, 2013
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