There has been an emergency shunt operation (for someone else), so we have been bumped at least an hour. I'm guessing longer than an hour.
Our time was supposed to be 9:45...so we are looking at 11ish for a start time...maybe?!?!
Monday, July 15, 2013
How to not be annoyed with hospital people
How to not be annoyed with hospital people...
Don't come to the hospital to have surgery when you are stressed...oh wait you're always stressed when you are going to have surgery (or your child).
Breathe in through the nose and out through the mouth.
Let go of any anxiety and contention you feel.
Focus on your happy place.
Starting at your toes relax every muscle in your body all the way up to your head.
OK...do you feel better now? I do to.
We have checked in and they have brought us back to examine her. We have spoken with Dr. Brockmeyer her neurosurgeon and are waiting to talk to the anesthesiologist.
A year or two ago PCMC started asking you to bathe your child the night before surgery and not put any lotion on to cut down on infections. This time they added have them sleep in clean PJ's and on clean linens. Then when we got here I had to wipe her down with these new antibacterial wipes and follow a certain cleansing routine. Wipe #1 Neck, Chest, Abdomen, Arms. Wipe #2 Back, Buttocks. Wipe #3 Legs. Wipe #4 groin (but not genitals). Sounds like a good idea I guess.
Here is a picture of the new wipes.
Jason gave Ellie a blessing last night. One of the things that jumped out at me was that she is supposed to have joy in this earth life. The Book of Mormon teaches that "man is that he might have joy" found here in verse 25. Ellie is just so mellow...she hardly ever cries or complains and hardly ever smiles. I guess I never thought about one of the purposes of Ellie being here is so that she can have joy/find joy/be joyful.
The way that I interpret that scripture is different from "eat, drink and be merry, for tomorrow we die" meaning do whatever you want that brings temporary happiness (found here in verse 7). The way that I have found true joy is through the everlasting gospel of Jesus Christ (The Church of Jesus Christ of Latter-Day Saints), eternal families, having the spirit in my life, receiving ongoing blessings and love from heaven. This brings lasting peace, comfort and hope.
I also got a blessing from Jason and the message I received was God will give me all of the tools to handle whatever comes my way. "God will not leave me comfortless" (found here in John 14:18). My favorite scripture is from the Book of Mormon. Lehi has followed the lords command and taken his family into the wilderness. The Lord then asks them to return and get some records of their people from the wicked King Laban. Lehi sends his sons back to get the records. several of his sons complain but there is one who does not, this is Nephi. Nephi says "I awill go and do the things which the Lord hath commanded, for I know that the Lord giveth no bcommandments unto the children of men, save he shall cprepare a way for them that they may accomplish the thing which he commandeth them." This scripture is found here in verse 7.
I believe this will all my heart. If I were asked to do the things I am asked to do I couldn't do it. But "with God all things are possible" (found here in Matthew 19:26).
If you have any questions about my faith or The Church of Jesus Christ of Latter-Day Saints, please ask me or visit http://mormon.org/
Don't come to the hospital to have surgery when you are stressed...oh wait you're always stressed when you are going to have surgery (or your child).
Breathe in through the nose and out through the mouth.
Let go of any anxiety and contention you feel.
Focus on your happy place.
Starting at your toes relax every muscle in your body all the way up to your head.
OK...do you feel better now? I do to.
We have checked in and they have brought us back to examine her. We have spoken with Dr. Brockmeyer her neurosurgeon and are waiting to talk to the anesthesiologist.
A year or two ago PCMC started asking you to bathe your child the night before surgery and not put any lotion on to cut down on infections. This time they added have them sleep in clean PJ's and on clean linens. Then when we got here I had to wipe her down with these new antibacterial wipes and follow a certain cleansing routine. Wipe #1 Neck, Chest, Abdomen, Arms. Wipe #2 Back, Buttocks. Wipe #3 Legs. Wipe #4 groin (but not genitals). Sounds like a good idea I guess.
Here is a picture of the new wipes.
Here are some pictures of her before her surgery
The way that I interpret that scripture is different from "eat, drink and be merry, for tomorrow we die" meaning do whatever you want that brings temporary happiness (found here in verse 7). The way that I have found true joy is through the everlasting gospel of Jesus Christ (The Church of Jesus Christ of Latter-Day Saints), eternal families, having the spirit in my life, receiving ongoing blessings and love from heaven. This brings lasting peace, comfort and hope.
I also got a blessing from Jason and the message I received was God will give me all of the tools to handle whatever comes my way. "God will not leave me comfortless" (found here in John 14:18). My favorite scripture is from the Book of Mormon. Lehi has followed the lords command and taken his family into the wilderness. The Lord then asks them to return and get some records of their people from the wicked King Laban. Lehi sends his sons back to get the records. several of his sons complain but there is one who does not, this is Nephi. Nephi says "I awill go and do the things which the Lord hath commanded, for I know that the Lord giveth no bcommandments unto the children of men, save he shall cprepare a way for them that they may accomplish the thing which he commandeth them." This scripture is found here in verse 7.
I believe this will all my heart. If I were asked to do the things I am asked to do I couldn't do it. But "with God all things are possible" (found here in Matthew 19:26).
If you have any questions about my faith or The Church of Jesus Christ of Latter-Day Saints, please ask me or visit http://mormon.org/
Saturday, July 13, 2013
Most of the time I forget how disabled Ellie is
These past few days have been really hard for me.
Ellie is doing fine and I think she will be fine through these next few weeks...that is not it.
But seeing the CT images of her brain and then explaining a typical brain to the blog readers and her normal brain and her brain now sounds TERRIBLE. But it doesn't change who she is and how I love her.
Her normal brain is the way she has always been...nothing has changed there. But sometimes I forget. I only see a beautiful, patient, loving, smart girl. I forget that other people see person with severe disabilities and feel sorry for her. I forget that people wonder what happened to her. I forget that people don't know how to act or what to say around her. I forget that she is scary to most people.
I forget that it is not normal to change your 11 year old's diapers, carry them everywhere, feed them though a tube in their stomach, worry about them pooping, monitor vital signs, get up several times a night because alarms are beeping, etc, etc, etc.
Every part of my interaction with her is different than it would be with another 11 year old.
It is not normal, but it is normal for me and Ellie. I normally don't see her disabilities at all, I truly don't, and I like it that way. At times like these I am reminded of her disabilities and I don't like it. I only want to see her positive characteristics, her talents and her beauty.
I have found myself distancing myself from her these last few days (without meaning too) because I think deep down I am afraid of losing her and don't know how I will be able to bear it.
It will be fine and I will get back to normal when I can forget that Ellie has disabilities I just need some time.
Ellie is doing fine and I think she will be fine through these next few weeks...that is not it.
But seeing the CT images of her brain and then explaining a typical brain to the blog readers and her normal brain and her brain now sounds TERRIBLE. But it doesn't change who she is and how I love her.
Her normal brain is the way she has always been...nothing has changed there. But sometimes I forget. I only see a beautiful, patient, loving, smart girl. I forget that other people see person with severe disabilities and feel sorry for her. I forget that people wonder what happened to her. I forget that people don't know how to act or what to say around her. I forget that she is scary to most people.
I forget that it is not normal to change your 11 year old's diapers, carry them everywhere, feed them though a tube in their stomach, worry about them pooping, monitor vital signs, get up several times a night because alarms are beeping, etc, etc, etc.
Every part of my interaction with her is different than it would be with another 11 year old.
It is not normal, but it is normal for me and Ellie. I normally don't see her disabilities at all, I truly don't, and I like it that way. At times like these I am reminded of her disabilities and I don't like it. I only want to see her positive characteristics, her talents and her beauty.
I have found myself distancing myself from her these last few days (without meaning too) because I think deep down I am afraid of losing her and don't know how I will be able to bear it.
It will be fine and I will get back to normal when I can forget that Ellie has disabilities I just need some time.
Friday, July 12, 2013
Collapsed Brain
So something has been "off" with Ellie for a few months now. She has had 2 hospitalizations and many many many tests trying to figure this out.
The things that were "off"...
When I sit her up she gets sleepy for a while, and then when I lay her down she gets sleepy for a while.
No peeing
No pooping
Increased heart-rate
Occasional grinding teeth
I thought maybe we should check her shunt. I mentioned it several times on both hospitalizations, but other reasons for her being "off" were always found...so her shunt was never looked at, although I did talk with nuerosurgery while inpatient they also reassured me that her symptoms were not shunt related.
I still felt like we needed to look at her shunt.
Maybe I need to explain...we all have fluid in our brain in areas called "ventricles". This fluid cushions our brain so when we bump our head we don't get knocked unconscious. A cross-section of your head would look something like this...
The things that were "off"...
When I sit her up she gets sleepy for a while, and then when I lay her down she gets sleepy for a while.
No peeing
No pooping
Increased heart-rate
Occasional grinding teeth
I thought maybe we should check her shunt. I mentioned it several times on both hospitalizations, but other reasons for her being "off" were always found...so her shunt was never looked at, although I did talk with nuerosurgery while inpatient they also reassured me that her symptoms were not shunt related.
I still felt like we needed to look at her shunt.
Maybe I need to explain...we all have fluid in our brain in areas called "ventricles". This fluid cushions our brain so when we bump our head we don't get knocked unconscious. A cross-section of your head would look something like this...
Ellie's brain has extra large ventricles with lots of fluid. This is called "hydrocephalus". She has very little brain matter, most of her head is fluid. She has had a surgery where they place a 1 way valve (called a shunt) into the fluid and then thread tubing under her skin and the extra fluid drains into her abdomen (not into her stomach...just the area around her stomach). This is what Ellie's brain normally looks like...
So yesterday we went for a head CT scan and a series of x-rays looking at the shunt and the shunt tubing. Like I said, something was "off" and This was something we hadn't looked at for a while. She had been stable for several years and the neurosurgeon felt like there was no need to keep doing 6 month or even 1 year follow-ups and just to come in if there were problems. So her last head CT and shunt series (x-rays) were over a year ago.
Her CT yesterday was DRASTICALLY different from the year before. The ventricles were completely collapsed. And since the ventricles normally hold the brain in place (out by the skull) her brain has now collapsed in also.
The Dr. said (twice) that this was the most drastic case he has ever seen...GREAT!
Her brain now looks something like this...
He left the room to consult with one of the other neurosurgeons to get a second opinion and they both felt like they should do something.
So next Monday they will be doing surgery. They will be removing the end of the shunt tubing from her abdomen and allowing the CSF (Cerebral Spinal Fluid) (the fluid from her brain) to drain into a bag outside of her body. They will raise the bag a few centimeters per day (higher off the ground). This will help the fluid to drain more slowly from her brain and hopefully allow the ventricles to reinflate with fluid and her brain to be pushed back where it used to be.
They are not sure this will work, but feel like they should try.
The good news is she has not shown extreme symptoms such as extreme lethargy, vomiting, seizures, etc..
Once I found out what her scans looked like...I realized why she has been grinding her teeth. It normally means ear infection, but now I am assuming she was saying my head is killing me. (This was one of the things that has been "off" with her---grinding her teeth. And yes I thought it could possible be shunt related, which is why I brought her in. But now I KNOW that this is why she has been grinding her teeth.)
You have to know surgeons...THEY ARE COCKY and they think they know EVERYTHING.
I asked if this could have to do with her not peeing and not pooping...he emphatically said NO.
I asked if the "Free Air" in her abdomen could have been from this...he emphatically said NO.
I asked if her spinal surgery from last August could have caused this...he emphatically said NO.
But here's where you have to take what the surgeon says and say to yourself "they don't know everything". I REALLY hope this is related to the no peeing and no pooping. That would be AWESOME.
They don't know if they will be able to get her brain back where it was a year ago, but they are going to try and improve it.
Surgery will be Monday and she will be inpatient for at least that week. Then depending on how things go she would have another surgery the next Monday where they would be placing a new higher pressure shunt. It sounds opposite, but a higher pressure shunt drains less fluid. (It takes a higher pressure in the brain for any fluid to drain).
The Dr. said this is a case of extreme over-drainage. He does not know why this happened.
This is bad and scary and I am nervous.
I suppose that I am comforted by the fact that yes, symptomatically she is doing well. But her brain has collapsed for heavens sake. How can you even survive that? It just shows you how resilient the brain and the human body are...it is amazing creation from God.
We would appreciate your fasting and prayers over the next few weeks that the Dr.'s may be inspired to help Ellie in the best way possible if it be God's will, that God's will may be done, and comfort for Ellie and our family.
Thursday, July 11, 2013
Lots of changes
Saw 2 Dr.'s yesterday and 1 we will see one more later today.
We have a new bowel plan. We really really hope it works because the milk of magnesia DID NOT!
We upped her calories a bit, she has been losing a bit of weight over the last year. Right now she gets 1 C. of the powdered formula for the whole day (it is mixed with water of course). The dietician wanted to up it to 1 1/2 C. per day. That seems like a LOT more. I talked her in to 1 1/4 C. But she wants to see her back in 3 months instead of our normal 6 or 12 months). I am scared of her gaining too much weight because one time when she was a baby a Primary Children's Dietician figured out her calories but forgot to take into account her activity level (extrememly low) and we started feeding her and she was gaining a pound a week and became literally REALLY FAT. Also...every pound she gains I have to lift every day...multiple times per day. So I REALLY don't want her to gain more weight...Ever!
45 pounds is the ideal maximum weight of a child with severe disabilities in my opinion. You can can still lift them with no problem to chair, bed, floor, couch, bath. Beyond that IT GETS HARD! Ellie weighs 63 pounds.
We are changing her calcium because her current calcium also had vitamin D...and her vitamin D levels were high. So now we have to find a powder or liquid calcium with no vitamin D and no magnesium...I am anticipating this will be hard. They add the magnesium to help with absorption and Vitamin D because...I don't know...??
She normally gets some salt added to her formula to help with electrolytes...we will be switching back to something called "Lite Salt" because lite salt is potassium chloride instead of sodium chloride (like regular salt). This is due to her potassium being low. We did the Lite Salt a few years ago...but her potassium got high so we switched to regular salt.
I know this is all boring, boring, boring...but isn't that mostly what life is???
Today we go get blood work done (ordered by the dietician yesterday), a CT scan (for shunt) and shunt series (x-rays). And then meet with the neurosurgeon. I just want her shunt checked out. She has been getting sleepy when I sit her up and then sleepy when I lay her down. Several years ago when she was doing this same thing the neurosurgeon was sure this was a sign of the shunt malfunctioning so she had surgery to redo it. It didn't really help. And the surgeon afterwards thought it probably didn't need to be done (except that the tubing was cracking in her neck...so that was good it got replaced). The neurosurgery nurse does not think that this sounds like a shunt problem, but I really want to get it checked out non-the-less.
We have a new bowel plan. We really really hope it works because the milk of magnesia DID NOT!
We upped her calories a bit, she has been losing a bit of weight over the last year. Right now she gets 1 C. of the powdered formula for the whole day (it is mixed with water of course). The dietician wanted to up it to 1 1/2 C. per day. That seems like a LOT more. I talked her in to 1 1/4 C. But she wants to see her back in 3 months instead of our normal 6 or 12 months). I am scared of her gaining too much weight because one time when she was a baby a Primary Children's Dietician figured out her calories but forgot to take into account her activity level (extrememly low) and we started feeding her and she was gaining a pound a week and became literally REALLY FAT. Also...every pound she gains I have to lift every day...multiple times per day. So I REALLY don't want her to gain more weight...Ever!
45 pounds is the ideal maximum weight of a child with severe disabilities in my opinion. You can can still lift them with no problem to chair, bed, floor, couch, bath. Beyond that IT GETS HARD! Ellie weighs 63 pounds.
We are changing her calcium because her current calcium also had vitamin D...and her vitamin D levels were high. So now we have to find a powder or liquid calcium with no vitamin D and no magnesium...I am anticipating this will be hard. They add the magnesium to help with absorption and Vitamin D because...I don't know...??
She normally gets some salt added to her formula to help with electrolytes...we will be switching back to something called "Lite Salt" because lite salt is potassium chloride instead of sodium chloride (like regular salt). This is due to her potassium being low. We did the Lite Salt a few years ago...but her potassium got high so we switched to regular salt.
I know this is all boring, boring, boring...but isn't that mostly what life is???
Today we go get blood work done (ordered by the dietician yesterday), a CT scan (for shunt) and shunt series (x-rays). And then meet with the neurosurgeon. I just want her shunt checked out. She has been getting sleepy when I sit her up and then sleepy when I lay her down. Several years ago when she was doing this same thing the neurosurgeon was sure this was a sign of the shunt malfunctioning so she had surgery to redo it. It didn't really help. And the surgeon afterwards thought it probably didn't need to be done (except that the tubing was cracking in her neck...so that was good it got replaced). The neurosurgery nurse does not think that this sounds like a shunt problem, but I really want to get it checked out non-the-less.
Monday, July 8, 2013
I might have figured something out---partially
Since coming home after the UTI she has not been urinating AT ALL on her own...She has probably had 3 wet diapers in 3 or 4 weeks. Everything else I have had to cath.
During that hospitalization we changed her "pooping" medicine from lactulose to milk of magnesia. It has been terrible. We have been doing the maximum daily dose of milk of magnesia and it does NOTHING.
The other day (it had been several days with no bowel movement) I took it up a notch and did an enema and a full dose of miralax in addition to her milk of magnesia, and daily supposity. She had results and wah-lah...her heart-rate came down and no grinding teeth.
But then the next day she had very little urine output...I think because enemas (and other stool softeners/stimulants) draw the water into the bowels to help you go.
And when she is super constipated she doesn't urinate either, which always makes me think that she has a UTI. And then I freak because I don't want it to go to her kidneys and damage them.
So it's like this...
pooping regularly= peeing OK (with a cath)
constipated= decreased pee
do bowel cleanout= decreased pee
So we REALLY need to figure out a new bowel plan. The lactulose (that she was on before for several years) worked really well but they think that might have been contributing to the free air in her abdomen. She has an appt with gastroenterology on Wed, so we will come up with an updated plan then.
A week or 2 ago she had a uro-dynamic study. It was in a procedure room just off of the operating rooms at PCMC. I got to stay, but had to change into a hairnet and jumpsuit (that was a first for me!). They emptied her bladder then filled her bladder with "contrast" and did a series of x-rays as her bladder filled to see how it reacted.
I will tell you haw a normal bladder should respond, then how hers responded.
When your bladder is full then the bladder spasms. This causes the urinary sphincter to spasms and that is how you know you need to go to the bathroom. Then you relax the sphincter and you pee.
These were their findings...She has a large bladder, but it is a safe bladder, it does not reflux back into the kidneys. When her bladder is full it spasms (like normal), the sphincter spasms (like normal) but she cannot relax it to go pee. So she feels like she has to go to the bathroom, but cannot. They called it an "uncoordinated sphincter". They do not have a reason for this to be happening. It could be nerve damage either from the spinal surgery or ?????? They really didn't have any guesses for me.
As of now they suggested cathing her 3 or 4 times a day (up from 2) in the hopes that sometimes if you can get the bladder smaller it will start working better. And they put her on a low dose oral antibiotic for 6 months. Because they said 2/3 of people that get a UTI have a second UTI within 6 months.
I have decided to go down on her baclofen pump dose because all of her urinary problems started around the time of her spinal surgery. But at this same time we went up on her baclofen pump dose and have gone up several times since then.
Baclofen must be weened, so we will have to lower it through several steps. The first lowering will be this Wed. Unfortunately it must be done at PCMC and not just at home.
Her baclofen pump is an implanted device in her abdomen that delivers a medicine called baclofen directly into her spinal fluid to help her relax her tight muscles.
I don't want her muscles to be tight, but I need to know if this is the cause of her problems, it can be a side effect of the baclofen.
So far we have been able to cath her, but if it comes to a point that we are unable to, then they surgically make a hole above the urinary sphincter (in her stomach) and you cath through that hole instead of through the regular spot.
During that hospitalization we changed her "pooping" medicine from lactulose to milk of magnesia. It has been terrible. We have been doing the maximum daily dose of milk of magnesia and it does NOTHING.
The other day (it had been several days with no bowel movement) I took it up a notch and did an enema and a full dose of miralax in addition to her milk of magnesia, and daily supposity. She had results and wah-lah...her heart-rate came down and no grinding teeth.
But then the next day she had very little urine output...I think because enemas (and other stool softeners/stimulants) draw the water into the bowels to help you go.
And when she is super constipated she doesn't urinate either, which always makes me think that she has a UTI. And then I freak because I don't want it to go to her kidneys and damage them.
So it's like this...
pooping regularly= peeing OK (with a cath)
constipated= decreased pee
do bowel cleanout= decreased pee
So we REALLY need to figure out a new bowel plan. The lactulose (that she was on before for several years) worked really well but they think that might have been contributing to the free air in her abdomen. She has an appt with gastroenterology on Wed, so we will come up with an updated plan then.
A week or 2 ago she had a uro-dynamic study. It was in a procedure room just off of the operating rooms at PCMC. I got to stay, but had to change into a hairnet and jumpsuit (that was a first for me!). They emptied her bladder then filled her bladder with "contrast" and did a series of x-rays as her bladder filled to see how it reacted.
I will tell you haw a normal bladder should respond, then how hers responded.
When your bladder is full then the bladder spasms. This causes the urinary sphincter to spasms and that is how you know you need to go to the bathroom. Then you relax the sphincter and you pee.
These were their findings...She has a large bladder, but it is a safe bladder, it does not reflux back into the kidneys. When her bladder is full it spasms (like normal), the sphincter spasms (like normal) but she cannot relax it to go pee. So she feels like she has to go to the bathroom, but cannot. They called it an "uncoordinated sphincter". They do not have a reason for this to be happening. It could be nerve damage either from the spinal surgery or ?????? They really didn't have any guesses for me.
As of now they suggested cathing her 3 or 4 times a day (up from 2) in the hopes that sometimes if you can get the bladder smaller it will start working better. And they put her on a low dose oral antibiotic for 6 months. Because they said 2/3 of people that get a UTI have a second UTI within 6 months.
I have decided to go down on her baclofen pump dose because all of her urinary problems started around the time of her spinal surgery. But at this same time we went up on her baclofen pump dose and have gone up several times since then.
Baclofen must be weened, so we will have to lower it through several steps. The first lowering will be this Wed. Unfortunately it must be done at PCMC and not just at home.
Her baclofen pump is an implanted device in her abdomen that delivers a medicine called baclofen directly into her spinal fluid to help her relax her tight muscles.
I don't want her muscles to be tight, but I need to know if this is the cause of her problems, it can be a side effect of the baclofen.
So far we have been able to cath her, but if it comes to a point that we are unable to, then they surgically make a hole above the urinary sphincter (in her stomach) and you cath through that hole instead of through the regular spot.
Monday, June 24, 2013
Rough Week
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.
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.
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.
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