Tuesday, July 16, 2013
Suprax
Nuerosurgery is going to start her on suprax (antibiotic) it is the same one she was on for her last UTI. I still want Urology to weigh in. To see if we need to look at her kidneys or do a different plan. I don't really feel comfortable having neurosurgery making decisions about urology issues. I'm sure Urology will call or stop by.
Really?!?!?
So yes, it looks like Ellie has another UTI. I have only seen the results that the nurse pulled up. I have not spoken to nuerosurgery (the Dr.'s following her right now) about it yet. I did place a call to her urologist.
I am so frustrated by this. I have been extra extra careful about being really clean while cathing her, plus she is on a low dose antibiotic (Septra) to prevent a recurring UTI. We are back to Mom blaming herself...typical Mom of a child with disabilities. I guess that's the good news...I'm a normal Mom right?
I feel overwhelmed by this right now. Doesn't she have enough going on?
Today she has also needed oxygen while awake. This is not normal for her. I am disheartened by this. Maybe they are going up too fast on the EVD (External Ventricular Drain)
I spoke with Dr. Walker and asked him some questions this morning...
Can hydrocephalus get worse with puberty?
No. Hydrocephalus can cause early puberty, but hydrocephalus does not change with puberty.
Could the CSF (Cerebral Spinal Fluid) have gotten infected when her spine surgery got infected and do we need to check her CSF now?
It could have, but it didn't. If the CSF got infected it would have gotten to the baclofen pump and she would be REALLY REALLY sick. There is no need to check it .
Can we send a urine sample due to decreased urine output over the last 3 days?
Yes...at this point in the day we have sent the sample and gotten the results back for the UA (Urinalysis). The results for the culture will not be back for 24-48 hours. The UA showed increased white blood cells, red blood cells and bacteria.
How much success have you seen with this procedure (raising an EVD to fill the ventricles back up with fluid and push the brain back in to position)?
He is optomistic. They have done it before. Just not on this severe of a case. Dr. Brockmeyer had said that it might take a week or two. Dr Walker said it might take several weeks. "Several weeks" sounds longer than a "week or two."
END OF QUESTIONS
Dr Brockmeyer had told his residents that he wanted to do a repeat CT scan on Thurs or Fri. Dr. Walker wants to do one Wed and Fri. I like that better. Dr. Brockmeyer had shown me the CT scans but either he didn't explain it well, or I was in shock and didn't absorb the information well. Because Dr. Walker showed me again today and I was in shock again. I will try to draw another picture because I don't think I drew it accurately last time.
Dr. Brockmeyers plan was to raise the EVD 1 cm per day. Dr. Walker wants to do 2 CM per day.
So today we raised the EVD 2 cm and she is draining a lot more than she did yesterday. This is kind of opposite than what should happen. As you raise the EVD it should be harder to drain and should drain less. The Nuerosurgery Nurse Practicioner thinks as we raise it higher it will start to drain less.
Dr. Walker confirmed that the shunt malfunctioned. The shunt severely overdrained. The shunt will need to be replaced.
Also, I was wondering when the CT scans were and they were on 5/4/12. So a year and 2.5 months-ish.
I was looking over her blog and it looks like I started feeling like something was "off" starting in about April or May. So I am assuming that is when the overdrainage started happening. If it happened before that it could have affected other changes that we have made over the last year and 2 months. Such as raising seizure meds, etc... And maybe some of the changes we made didn't really need to be made.
First we have to make it through this over-drainage issue and surrounding surgeries. Then we can look at what changes have been made and did they really need to be made.
Hard day for Mom. But Ellie is doing OK.
I am so frustrated by this. I have been extra extra careful about being really clean while cathing her, plus she is on a low dose antibiotic (Septra) to prevent a recurring UTI. We are back to Mom blaming herself...typical Mom of a child with disabilities. I guess that's the good news...I'm a normal Mom right?
I feel overwhelmed by this right now. Doesn't she have enough going on?
Today she has also needed oxygen while awake. This is not normal for her. I am disheartened by this. Maybe they are going up too fast on the EVD (External Ventricular Drain)
I spoke with Dr. Walker and asked him some questions this morning...
Can hydrocephalus get worse with puberty?
No. Hydrocephalus can cause early puberty, but hydrocephalus does not change with puberty.
Could the CSF (Cerebral Spinal Fluid) have gotten infected when her spine surgery got infected and do we need to check her CSF now?
It could have, but it didn't. If the CSF got infected it would have gotten to the baclofen pump and she would be REALLY REALLY sick. There is no need to check it .
Can we send a urine sample due to decreased urine output over the last 3 days?
Yes...at this point in the day we have sent the sample and gotten the results back for the UA (Urinalysis). The results for the culture will not be back for 24-48 hours. The UA showed increased white blood cells, red blood cells and bacteria.
How much success have you seen with this procedure (raising an EVD to fill the ventricles back up with fluid and push the brain back in to position)?
He is optomistic. They have done it before. Just not on this severe of a case. Dr. Brockmeyer had said that it might take a week or two. Dr Walker said it might take several weeks. "Several weeks" sounds longer than a "week or two."
END OF QUESTIONS
Dr Brockmeyer had told his residents that he wanted to do a repeat CT scan on Thurs or Fri. Dr. Walker wants to do one Wed and Fri. I like that better. Dr. Brockmeyer had shown me the CT scans but either he didn't explain it well, or I was in shock and didn't absorb the information well. Because Dr. Walker showed me again today and I was in shock again. I will try to draw another picture because I don't think I drew it accurately last time.
Dr. Brockmeyers plan was to raise the EVD 1 cm per day. Dr. Walker wants to do 2 CM per day.
So today we raised the EVD 2 cm and she is draining a lot more than she did yesterday. This is kind of opposite than what should happen. As you raise the EVD it should be harder to drain and should drain less. The Nuerosurgery Nurse Practicioner thinks as we raise it higher it will start to drain less.
Dr. Walker confirmed that the shunt malfunctioned. The shunt severely overdrained. The shunt will need to be replaced.
Also, I was wondering when the CT scans were and they were on 5/4/12. So a year and 2.5 months-ish.
I was looking over her blog and it looks like I started feeling like something was "off" starting in about April or May. So I am assuming that is when the overdrainage started happening. If it happened before that it could have affected other changes that we have made over the last year and 2 months. Such as raising seizure meds, etc... And maybe some of the changes we made didn't really need to be made.
First we have to make it through this over-drainage issue and surrounding surgeries. Then we can look at what changes have been made and did they really need to be made.
Hard day for Mom. But Ellie is doing OK.
Advice
Found this on facebook...I love it...Perfect advice...just change down syndrome to "Child with disabilities"
10 things to say when a baby is born with down syndrome.
A few weeks ago I posted 10 things not to say to a parent of a child with Down syndrome.
Someone emailed me a day or two later.
“My father and I were talking about your post about 10 things not to say to a parent of a child with Down syndrome, and we were wondering … What should we say? … Please, help us. We really want to know.”
I’ve given this some thought. I know every parent is different, so not all of these on my list will resonate with everyone.
10. How are you doing?
After my daughter Polly’s birth and diagnosis of Down syndrome, I appreciated friends and family asking how I was doing. I realize not everyone would want to talk about their feelings but it meant a lot to me when people reached out and “went there.”
9. He/she has your eyes/nose/hair etc…
One of the things I worried about after Polly’s birth was that she wouldn’t look like the rest of our family. Of course, she does. Sure, it’s noticeable that Polly has Down syndrome. Her eyes are almond shaped. Her nose is a bit flat. But she also has blonde hair like her sisters. She has my smile.
At first, I just wanted to know that although she had Down syndrome, she was my baby.
8. How’s her health?
Most people are aware that an extra chromosome on the 21st pair brings with it added medical concerns. I was fine when people asked about Polly’s health. It provided common ground, something to talk about during awkward pauses. And of course, friends and family asked so that they could pray for her health.
7. You are going to be a great parent.
I needed to hear these words. I was afraid. Down syndrome was new. I would have loved the reassurance.
6. We brought the baby a present.
Our daughter was sick right after her birth for three weeks. We went from having a baby to having a sick child. Polly didn’t get gifts, and we didn’t get cards with hearty congratulations on the birth of our child.
Hear me, you guys. If you are going to see a family after their baby is born with Down syndrome, bring a cute outfit, or balloons, or a stuffed animal.
In other words, celebrate new life.
5. I am bringing you a meal Tuesday at six o’clock.
Offer practical help. And don’t say, “what can I do?” or “let me know if I can help.” Parents are too out of it to ask. Just tell them you are bringing a meal. And be specific. Give the day and the time. The parent will check it off her list. Being concrete will put her mind at ease.
4. Can I hold him/her?
Pay attention to the new baby. Hold him. Cuddle him. Love on him. Pray for him. Your tangible, bodily acceptance will have a great, positive effect on the family.
3. We’d like to take the other kids out to a movie Saturday and then have them over for pizza.
Once again, tangible help. If there are other children in the family, chances are they are getting lost in the shuffle. Schedule a time to take the kids out to do something fun. Again, tell the parents when, where, and for how long.
Another tip: take them for a full afternoon or for the day. Parents need time together and with the baby, and they need to know their other kids are attended to.
2. You make beautiful children.
I always say this to a new parent and I always get a huge smile in return. Parents crave assurance that they did well, because trust me, in the beginning they aren’t sure when Down syndrome is in the picture. Compliment the baby. Fuss over her. And compliment the parents on a job well done.
1. Congratulations on the birth of your baby!
I don’t recall getting congratulated. Those first days are squiggly in my mind, but oh how I’d love a story to pop up of someone embracing me and congratulating me on this new little life that with God’s help, I produced.
Make a big deal over the baby. It’s a baby! And she/he and the parents deserve all the love, attention, and excitement that comes with new life.
10 things to say when a baby is born with down syndrome.
A few weeks ago I posted 10 things not to say to a parent of a child with Down syndrome.
Someone emailed me a day or two later.
“My father and I were talking about your post about 10 things not to say to a parent of a child with Down syndrome, and we were wondering … What should we say? … Please, help us. We really want to know.”
I’ve given this some thought. I know every parent is different, so not all of these on my list will resonate with everyone.
10. How are you doing?
After my daughter Polly’s birth and diagnosis of Down syndrome, I appreciated friends and family asking how I was doing. I realize not everyone would want to talk about their feelings but it meant a lot to me when people reached out and “went there.”
9. He/she has your eyes/nose/hair etc…
One of the things I worried about after Polly’s birth was that she wouldn’t look like the rest of our family. Of course, she does. Sure, it’s noticeable that Polly has Down syndrome. Her eyes are almond shaped. Her nose is a bit flat. But she also has blonde hair like her sisters. She has my smile.
At first, I just wanted to know that although she had Down syndrome, she was my baby.
8. How’s her health?
Most people are aware that an extra chromosome on the 21st pair brings with it added medical concerns. I was fine when people asked about Polly’s health. It provided common ground, something to talk about during awkward pauses. And of course, friends and family asked so that they could pray for her health.
7. You are going to be a great parent.
I needed to hear these words. I was afraid. Down syndrome was new. I would have loved the reassurance.
6. We brought the baby a present.
Our daughter was sick right after her birth for three weeks. We went from having a baby to having a sick child. Polly didn’t get gifts, and we didn’t get cards with hearty congratulations on the birth of our child.
Hear me, you guys. If you are going to see a family after their baby is born with Down syndrome, bring a cute outfit, or balloons, or a stuffed animal.
In other words, celebrate new life.
5. I am bringing you a meal Tuesday at six o’clock.
Offer practical help. And don’t say, “what can I do?” or “let me know if I can help.” Parents are too out of it to ask. Just tell them you are bringing a meal. And be specific. Give the day and the time. The parent will check it off her list. Being concrete will put her mind at ease.
4. Can I hold him/her?
Pay attention to the new baby. Hold him. Cuddle him. Love on him. Pray for him. Your tangible, bodily acceptance will have a great, positive effect on the family.
3. We’d like to take the other kids out to a movie Saturday and then have them over for pizza.
Once again, tangible help. If there are other children in the family, chances are they are getting lost in the shuffle. Schedule a time to take the kids out to do something fun. Again, tell the parents when, where, and for how long.
Another tip: take them for a full afternoon or for the day. Parents need time together and with the baby, and they need to know their other kids are attended to.
2. You make beautiful children.
I always say this to a new parent and I always get a huge smile in return. Parents crave assurance that they did well, because trust me, in the beginning they aren’t sure when Down syndrome is in the picture. Compliment the baby. Fuss over her. And compliment the parents on a job well done.
1. Congratulations on the birth of your baby!
I don’t recall getting congratulated. Those first days are squiggly in my mind, but oh how I’d love a story to pop up of someone embracing me and congratulating me on this new little life that with God’s help, I produced.
Make a big deal over the baby. It’s a baby! And she/he and the parents deserve all the love, attention, and excitement that comes with new life.
Questions
It took her about 5 hours to wake up from anesthesia yesterday. Then she was in a little bit of pain but not too bad. Here is a pic of her awake last night
She slept well through the night besides a few drops in oxygen. At home I have the oxygen at 5 liters (at night only) because that is as high as my machine goes and I am not willing to get up during the night and adjust it to her lowest (most optimal) setting. So they thought they would try it lower (1 liter) last night and it obviously wasn't enough.
They raised the EVD (External Ventricular Drain) (The bag that the fluid from her brain is draining into) 1 cm. They plan on raising it 1 cm per day.
I want them to send a urine culture, I have not been getting as much urine out when I cath her for 2 or 3 days now. I will talk to them when they round.
Here are the questions I asked the neurosurgery residents yesterday...
Where is CSF (Cerebral Spinal Fluid) (The fluid in your spine and brain) created? Brain? Spine? Both? the answer is brain
Can your body stop making CSF?
No
When are we going to repeat CT scans?
Thurs or Fri
How much raise the EVD?
1 cm/day
Not draining much CSF yet, are you worried?
No
Can we do her vibrating vest with the EVD?
yes
Have we sent a sample of the CSF?
no, it looked pristine, there is no reason to send it
Is the tubing coming out of the belly the exact tubing coming down from her brain, or is there a connector in her belly?
Same tubing
There was a little stuff leaking out of wound in belly (where tubing is coming out), could that be CSF?
No, we had to cut through fat and fat is juicy
END OF QUESTIONS
Sometimes I hate that this is a teaching hospital. OK...a lot of times I hate that this is a teaching hospital (It means you have medical students here helping/working/learning how to be a Dr.). I understand Dr.'s have to get their experience somewhere I just wish it wasn't on us. For example, Ellie's surgeon is out of town this week and so she is being followed by a different neurosurgeon, but neither surgeon stopped by to see how she was doing last night...they sent their residents. If the Dr. following her doesn't stop by today, I will have to get proactive.
She slept well through the night besides a few drops in oxygen. At home I have the oxygen at 5 liters (at night only) because that is as high as my machine goes and I am not willing to get up during the night and adjust it to her lowest (most optimal) setting. So they thought they would try it lower (1 liter) last night and it obviously wasn't enough.
They raised the EVD (External Ventricular Drain) (The bag that the fluid from her brain is draining into) 1 cm. They plan on raising it 1 cm per day.
I want them to send a urine culture, I have not been getting as much urine out when I cath her for 2 or 3 days now. I will talk to them when they round.
Here are the questions I asked the neurosurgery residents yesterday...
Where is CSF (Cerebral Spinal Fluid) (The fluid in your spine and brain) created? Brain? Spine? Both? the answer is brain
Can your body stop making CSF?
No
When are we going to repeat CT scans?
Thurs or Fri
How much raise the EVD?
1 cm/day
Not draining much CSF yet, are you worried?
No
Can we do her vibrating vest with the EVD?
yes
Have we sent a sample of the CSF?
no, it looked pristine, there is no reason to send it
Is the tubing coming out of the belly the exact tubing coming down from her brain, or is there a connector in her belly?
Same tubing
There was a little stuff leaking out of wound in belly (where tubing is coming out), could that be CSF?
No, we had to cut through fat and fat is juicy
END OF QUESTIONS
Sometimes I hate that this is a teaching hospital. OK...a lot of times I hate that this is a teaching hospital (It means you have medical students here helping/working/learning how to be a Dr.). I understand Dr.'s have to get their experience somewhere I just wish it wasn't on us. For example, Ellie's surgeon is out of town this week and so she is being followed by a different neurosurgeon, but neither surgeon stopped by to see how she was doing last night...they sent their residents. If the Dr. following her doesn't stop by today, I will have to get proactive.
Monday, July 15, 2013
In a room...still sleeping
She is very sleepy...I have seen her wake up and move for about 3 seconds...literally.
They shaved part of her head (I wasn't expecting this). I guess they just prepped her in case they decided to pull the whole shunt out and have the tube come directly out of her head rather than her belly. I knew they would have to shave it next week or whenever they do the new shunt...I just wasn't expecting it today.
They shaved part of her head (I wasn't expecting this). I guess they just prepped her in case they decided to pull the whole shunt out and have the tube come directly out of her head rather than her belly. I knew they would have to shave it next week or whenever they do the new shunt...I just wasn't expecting it today.
This is where the tubing comes out of her belly.
The tubing goes into this device that measures how much fluid comes out. Right now they have the device level with her belly, and they will raise it several centimeters each day. This will make it harder for the fluid to drain out and hopefully it can build back up in her brain.
All of her vitals look good right now. She is breathing on her own and needing no oxygen. Her respirations (Breaths per minute ) are very slow and shallow, but she is still coming out of anesthesia. She is tired and doesn't seem to be in pain.
Surgery done
The surgeon was not sure he would get any fluid out when he pulled the tubing out of her tummy, but he got a few drops. So we'll have to wait and see if it helps over the next few days/week.
He said everything went fine. I haven't seen her yet. She always takes a REALLY long time to wake up after anesthesia.
He said everything went fine. I haven't seen her yet. She always takes a REALLY long time to wake up after anesthesia.
Delayed
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?!?!
Our time was supposed to be 9:45...so we are looking at 11ish for a start time...maybe?!?!
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.
Subscribe to:
Posts (Atom)