Weaning

Last summer, while Ashley was not in school, I was determined to try and reduce/eliminate some of the medications she took. I just felt like she was reaching a point where the side effects of the medications were worse than the actual condition they were supposed to be treating. That is especially true with seizure meds.

At the beginning of the summer, Ashley was taking Depakene, Keppra, and Trileptal for seizures. She also was taking Clonidine to help her get to sleep at night, Risperdal because many, many years ago before she learned to sign well she would communicate through behavior and Risperdal is a behavior med, and Straterra for ADHD symptoms. She also was taking a low dose birth control pill to regulate her hormones because we would see more seizures with hormone fluctuations.

So I targeted the two meds with the worse side effects – Keppra and Risperdal. Through a very, very slow weaning process that consumed the entire summer, I was able to successfully eliminate both medications without any adverse effects to Ashley. Her seizures did not increase nor change in intensity, and her entire mood improved once the Risperdal was out of her system.

Now I’m wondering if I should try again with some of her other meds this summer.

Ashley still does have seizures, but very, very infrequently. Unless she is sick or getting sick (she does have a lot of ear infections), we see no seizures. In fact, a seizure is sometimes the first indication that she has an ear infection. I’m wondering if I should try to maybe not eliminate the Depakene but reduce the amount she takes.

Depakene can have a negative impact on one’s liver. Ashley started life with a liver deficit because her birth mother was an alcoholic. While on Depakene, Ashley does get frequent blood work done to monitor the status of her liver. I would like to think that I could lessen the impact to her liver if the dose of Depakene she took was smaller.

She has also been on Clonidine for a long, long time. While I haven’t noticed any side effects to that medication, I would still like to reduce the amount of meds she is taking, especially if she doesn’t really need it any longer. Sleep has never been one of Ashley’s well-honed skills, but I have noticed in the last couple of years that she is adjusting to the routine of sleep. Now instead of getting up 4-5 times a night, there are only 2-3 nights a week that she gets up at all, and then it is usually just one time. So maybe her body has finally accepted the wake/sleep cycle.

I think I may start with the Depakene. Instead of 10ml three times a day, I’ll go very slowly and try to get her to 5 ml three times a day by the end of the summer. And instead of 2 Clonidine at bedtime, I’ll try reducing to one and then if that goes well, to none by the end of the summer.

I always want her to have any medication that she truly needs, and figuring out exactly what she needs can sometimes be difficult. But building upon our success last summer, I hope that if things go well this summer, her liver will be in better shape and maybe the veil or fog of consciousness will dissipate a little more.

Paging Doctor Wonderful

Ashley had her 6 month visit with her neurologist last week. His bedside manner could be described as anything but good, but we have been seeing him since the day after I brought her home at age 2. There are other pediatric neurologists in town some of whom I have heard are very good. And, they probably wouldn't scare Ashley like her doctor did when he decided to dye his gray hair jet black. They probably also wouldn't question everything I suggested or viewed my comments with the slightest disdane, and their offices might be a tad more accessible for wheelchairs.

But we have ever switched doctors - never even considered it. Why?

Because I trust Ashley's neurologist. He was at her beside the Christmas Eve I almost lost her to a status seizure. He always calls me back if a seizure crisis happens, and now 15 years after we first visited his office, Ashley has almost no seizures, and the medications she takes are one without too many negative side effects.

He has done a fine job of keeping my daughter alive even if he hasn't been all warm and fuzzy. I'll take alive over that any day. But all these thoughts and that visit last week made me start wondering. How do we parents of children with complicated medical issues decide which doctor's hands we choose to place our children's lives?

Yes, there are often insurance issues that dictate a smaller number of available doctors, but outside of that, what is important to you when choosing a pediatrician or a specialist?

When it came to choosing a pediatrician, I looked for a group, rather than a doctor in a single practice, and I looked for the maximum hours the group was available for sick visits. The pediatrician group I chose has 'sick' hours seven days a week.

For specialists, I originally chose doctors based on their hospital affiliations and on recommendations from other parents of children with special needs. I have been very, very blessed to find a great group of specialists, doctors I will be sad to leave when Ashley matures and must move away from pediatric specialists.

I am very satisfied with all the professionals that provide care to my children, and very satisfied with the hospitals in my area. I dread having to start over again when my children get older, but am hopeful that those same parents who offered advice when my children were young, will also offer advice as my children turn to adulthood.

How about you? Are you satisfied with your children's doctors? How did you decide which doctors to use? And, do you have any plans yet for when your child is older?

Not A Skill Set I Want

Being the parent of a child with special needs, especially when some of those needs are medical and life threatening, is a difficult job. There is absolutely no doubt that we need help sometimes. We need nursing care for our children – we need specialists like neurologists, gastroenterologists, therapists, and such – we need for our friends to sometimes help ease the burden by bringing us a meal, helping with our other children, or even just being available to lend an ear. But ultimately, the care of our special needs children, as long as they reside in our homes, falls to the parent(s). We have to learn to cope for those times when we don’t have help. We have to know how to survive the long sleepless nights, the lack of time to shower, and how to care for everyone else in the family. And 99.9 percents of the parents of special needs children that I know (and that’s a whole lot) do know how to survive, how to cope when support systems fail. But recently I have met a parent who chooses not to cope without support.

This particular parent is married and has two children – one with special medical needs and one without. This parent has a LOT of support – nurses, grandparents, friends. Neither parent works, yet they live in a nice brick home with a large yard. They are currently working with a contractor to add on to the house. The mother regularly has her hair colored by a professional and has manicures and pedicures very frequently. She has an active social life that doesn’t include her children, and shopping is one of her favorite pastimes. They never lack for food, furniture, or entertainment options.

How does this particular family make all this happen? Primarily through the power of Facebook.

Each day brings a ‘request for prayers’ for a particular need. This morning’s prayer request involved hoping Mom can make it through the day without the nurse who happened to call out sick. Sometimes it’s comments like, “haven’t been shopping in 3 days – going through withdrawal” or “my nails look so bad that I just don’t want to leave the house”. Those comments usually draw someone to meet the need.

Your initial thought might be that I am jealous of this mom. You would be totally wrong. I also lack for very little but it is because I ensure my family’s needs are met. I’m not fond of always having people in my house, be they nurses, therapists or friends who visit unannounced. It’s just not in my nature to ask, ask, ask of others. I am the giver not the taker. And it has never once occurred to me in my life that I had a right to rely on other people to make my life what I want it to be. So no, I am not jealous.

What I am is embarrassed. I can understand when people of a certain political party don’t feel Medicaid and other such programs are necessary if they happen to meet or know this family that I just described. I can understand when politicians say we should rely on friends and our church to help meet our needs and therefore don’t need social programs to help us. Thing is, what this particular family has honed to a fine art is not the norm, is not even close to the norm.

This mom has a skill set that I do not wish to have. I seldom talk about religion, my beliefs or my faith on this blog. But today I am making an exception. Long ago, when I first became an adult and then later a mother, I chose a particular passage of the Bible as my guiding light. It is Proverbs, Chapter 31, verses 10-31.

Look it up and you will understand why the actions of this family and this mother bother me so much.

Doctor? I Wonder...

MALPRACTICE - failure of a professional person, as a physician or lawyer, to render proper services through reprehensible ignorance or negligence or through criminal intent, especially when injury or loss follows.

Brooke, the daughter of one of my best friends, recently switched from having a G-tube to having a GJ-tube. For several months, Brooke had been experiencing a great deal of pain whenever she was fed. The doctors did a lot of testing but couldn't come up with a reason for the pain. Their solution was to switch to the GJ-tube.

It sounded like an ok idea, and Brooke does have much less pain using it over the G-tube. But, it comes with a major problem - it gets clogged a LOT. And unlike with a G-tube, a parent or caregiver can't change it. Changing the GJ-rube requires a trip to the hospital or medical office for a radiologist to change it and make sure it is positioned correctly.

Seeing as the tube gets clogged almost weekly, that is a huge headache, and not to mention, lots of time off from work for Brooke's Mom (unpaid time off which for a single mom is devastating.) But if it makes life better for Brooke, her mom is all for it.

So what's the problem? Well, this past Sunday, the tube became clogged again. But a call to the GI doc provided bad news. He and the radiologist were not going to come in on Sunday to change the tube, and Brooke would just have to wait until Monday. But since ALL Brooke's nutrition and fluids are given via that tube, that meant she would quickly become dehydrated or Brooke's mom would have to use the G-tube part and cause Brooke to experience the pain again.

To say this infuriated Brooke's Mom and the rest of us who know and love this lovely little family would be an understatement. If a doctor chooses to treat children with significant needs, and further if that doctor is the one who recommended the GJ-tube, then his job is 24/7. If he wants time off, he makes arrangements for other doctors to back him up. I still find it almost incomprehensible that this happened.

We parents of children with significant medical needs must rely on the medical community to keep our children alive and healthy. So much is beyond our control, and that is a horrible feeling just knowing that we can't make it better.

I, for one, consider this malpractice...just saying....

Minimizing the Fog, Maximizing the Smiles

Ashley’s semiannual visit with her neurologist this week went very well. I was very excited to tell him about weaning Ashley off two of her meds – the two that in my opinion have the worst side effects.

She had been on Risperdal since early elementary school – about 11 years. Initially it was prescribed to help with self-injurious behaviors. I always believed that if she could develop a communication system, the behaviors would be significantly reduced or would disappear. But since things in the school system seldom move at the pace I would prefer, getting an appropriate communication system in place took a while. But I was correct – as her communication, both expressive and receptive, increased, the self-injurious behaviors decreased.

So ever so slowly I have been reducing her dose of Risperdal and this summer, ended it completely. The good news – no adverse effects. In fact, she seems happier all the time.

She had also been on Keppra, an anti-seizure medication, for about 8 years. As she approached and moved through the early stages of puberty, her seizures were out of control. At one point she was on four different medications trying to control the seizures, and all we could do was get them down to 5-7 a day. Two of the four medications she took for her seizures – Keppra and Topamax – have a tendency to increase aggressive behavior. Hence, we were tied to the Risperdal.

We ditched the Topamax after just a year because it truly was one of the worst medications I have ever seen, and I didn’t feel like it was making much of a difference with her seizures. This past summer, I decided to try weaning the Keppra also. And lo and behold – after just a small increase of seizures during the weaning process, Ashley is now down to 2-3 seizures a week, and those are usually very mild. And without those other meds in her body, she is so much happier.

Playing with medications for serious conditions likes seizures can be very daunting, but I do recommend that you constantly keep an open mind about them. I don’t regret having Ashley on the meds we have now removed – they helped when she needed the help. But, I am very glad that for the moment we have been able to stop them. She is still on several meds – Depakene and Trileptal for seizures, Clonidine for sleep, Strattera for ADHD (which in her case is very extreme), and Claritin and Nasonex for allergies. And in my dreams, we do reach a time when she won’t need any medications.

For now, though, I love having a less-foggy brained, very beautiful daughter!

I Didn't Forget

I haven't forgotten to post today, but I am just delaying my post.

Ashley's appointment with the neurosurgeon is today. We will get the results of her recent brain MRI. So I've decided to delay my post until I have (hopefully) good news to share...

Stop back by this afternoon please...

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Here's the post-doctor update, and it's a good one!!

There has been no change in Ashley's three brain tumors. The neurosurgeon has watched her closely over the last 5 years and done too many MRI studies to count, and each and everyone was exactly the same.

The verdict? We can now wait 3-4 years for another study, unless of course I notice any changes like weakness, headaches, loss of function, etc.

To say that I am thrilled is an understatement. The MRIs were so very difficult for Ashley and the use of anesthesia was always scary for me.

The doctor did scan her cervical spine this past time, and he also noticed nothing of concern there. He did say she has a bit of arthritis, but if she's not complaining, then neither am I!!

It's a good day. Now if we could just get our power back on post hurricane Irene, it would be a great day!

Moving On

I knew this day was coming but I really hoped that it wouldn't.

Ashley has LOTS of ear infections, and always has. Through the years, she has also developed cholesteatomas. Cholesteatomas are destructive and expanding growths consisting of keratinizing squamous epithelium in the middle ear and/or mastoid. They often occur with frequent ear infections, and they must be surgically removed.

She has had surgery four times to remove cholesteatomas.

She was probably around 4 years old when the 'bubblegum' antibiotic stopped working. We then moved to Augmentin, and that worked well for many years. But unfortunately, it too appears to have stopped being effective against Ashley's ear infections.

The doctors have also tried the 'cef' antibiotics - Omnicef, for example - , and they are ineffective. I had really hoped we wouldn't have to give up on the Augmentin because there aren't a lot of choices.

But here we are - another ear infection - even after two 14 day rounds of Augmentin. It's time to call it quits...

The doctor this time has prescribed an 'adult' antibiotic. I don't know a lot about it except for the fact that it is one that my rheumatologist prescribes for me. It is called Levaquin. I made the mistake of researching it today via Google, and it's pretty frightening. But, it seems to be working and working fast to make Ashley feel better.

I'll keep my fingers crossed that it will remain effective for a long while and will not bring any of the negative side effects that Dr. Google told me about.

Scary situation....

Striking a Balance

Do you ever feel like you over-react when you child with disabilities gets sick? I definitely do, but I don’t know how to strike a balance.

Ashley gets sick a lot – usually with cold-like symptoms, and those usually turn into a sinus infection and/or ear infections. I see other parents whose children have colds – snotty noses, coughs, etc. – and they don’t immediately take them to the doctor. But I do.

My over-reaction probably stems from an incident when Ashley was much younger. She was only 3 years old, and was sick with a pretty bad cold. She started to run a high fever, and was having some seizures. The seizure med that she was on at the time didn’t seem to work well when she got sick, or maybe just didn’t work too well anytime.

After several back-to-back seizures, I called 9-1-1. The rescue squad arrived within minutes, bundled her up and carried her to the ambulance. I followed in my car, except I didn’t really follow because with the help of a fireman, I had to scrape the ice from my car windows – I just headed to the hospital. I knew something was wrong when I actually arrived before the ambulance.

Ashley had gone into a major grand mal seizure in the ambulance. She stopped breathing, and the attendants were using a breathing bag on her. Things went from bad to worse that hospital visit when the doctors had to paralyze her to stop the seizures, and then, of course, had to put her on a ventilator.

That ambulance ride turned into a three month hospital stay that was touch and go for way too long. Ever since then, I get overly anxious whenever Ashley gets even a runny nose.

We’ve never had an event similar to that winter’s horrible seizure, but I still can’t relax. It’s been thirteen years, and I still keep a hospital bag packed for her.

Am I over-reacting? Probably. But what can I do to change? Any and all ideas would be greatly appreciated.

An Apple A Day

Do you have a favorite doctor? How would you describe him or her?

As parents of children with disabilities, we see a lot of doctors over the years. Some good – some not so good. But along the way, we usually find one or two that we trust completely. When I meet a parent with a young child and they are searching for doctors and specialists, I’m always reluctant to make a recommendation because my criteria for ‘good doctor’ might be different than theirs.

So I’m curious. What characteristics do you look for in a doctor? If you have a doctor you love, what’s special about them?

I’ve met a lot of good doctors since I first adopted Ashley 14 years ago. Here’s some examples, and these are definitly doctors I would recommend to new parents:

Dr. G was the pediatrician I first saw the week after I brought Ashley home. He was quirky and wore socks with his sandals. He played games with his patients and talked to them, not just to me. He trusted my opinions, and even asked for my thoughts. When my mother passed away and Ashley was marginally ill, he noticed I was super stressed and had Ashley admitted to the hospital ‘for observation’. Really it was just to get me some help for a few days. Dr. G also testified at my due process hearing when I was fighting for ESY services for Ashley, and he was one of the primary reasons we won that ESY battle.

Dr. M was also in the pediatric practice Dr. G was in. My first encounter with Dr. M was when he was convinced that he could get Ashley to take her medicine, medicine that I struggled to administer 3 times a day, every day. He told me that I should not put it in her bottle. So, I asked him to show me how to do it. After 30 minutes and a battle that left him scratched and bitten, he told me it would be ok to put her medicine in her bottle :) Dr. M would go from that point to the point of being the most skilled doctor at drawing blood from Ashley. She would sign ‘good job’ after every time he drew that blood. He came to understand her like no other doctor has. He won her heart by letting her play with his watch every time we showed up for an appointment, and when he retired, he gave Ashley his watch to keep. She still has it in a special place to this day.

Dr. T also saw Ashley the first week I brought her home and continues to see her today. His bedside manner leaves a lot to be desired, but I always felt he was the best at his specialty. I opted to give up bedside manner for skill. Once several years ago, he decided that his gray hair was making him look old, so he dyed it jet black. Ashley went in for an appointment and was scared to death because he looked so different! A year or so later, I would have to convince Dr. T that Ashley needed an MRI to check for brain tumors. She had previously had 2 tumors removed and her increasing seizures had me worried. He didn’t think it was necessary, but ordered the MRI anyway to make me happy. The MRI revealed three new brain tumors. Dr. T called me just hours after the MRI and made all the arrangements for Ashley to see a neurosurgeon the next day. I could hear the worry in his voice, and from that point forward, he and I have an understanding. He trusts me and I trust him. He’s working on his bedside manner, but he has never wavered from being the most skilled doctor of his specialty.

Good doctors are sometimes tough to find, but no parent should worry about switching doctors when necessary. Your child will signal to you when they are comfortable or uncomfortable with a particular doctor. Let them be your guide...

Worlds of Difference

Ronnie's urologist and nephrologist are both affiliated with the same big teaching hospital in our city. Their offices are one floor apart, but it feels like we are in two entirely different medical facilities when visiting the doctors.

The urologist is not all warm and fuzzy, but he and his staff are the most disability-aware medical team I have ever had the pleasure of meeting. I reviewed this doctor's office for my www.ustooplease.com website because I was so impressed.

And, I plan to review the nephrologist's office, but it will not even come close to being as positive a review.

Ronnie has seen this doctor twice now. We had to switch to a nephrologist who primarily sees adult patients because the pediatric nephrologist moved away. I really like the doctor - he is personable and warm and even a little quirky - but his disability awareness is very poor.

I requested an interpreter for Ronnie for each of his two visits. Neither time was an interpreter present. When scheduling Ronnie's next appointment, I tried again today to make sure that an interpreter would be available. After fussing loudly that no one has shown her how to order an interpreter, the scheduling person said it was the nurse's job to do that. Say what? The scheduler had no idea how to even start. I had to tell her what department of the teaching hospital handled such requests and I even had to tell her the director's name to contact if she needed assistance. Fortunately, I knew that information because my family frequently visits the medical offices at the hospital. But how would a first time patient know to do that? Would they, like Ronnie, have to see the doctor and not have a clue what was being said?

When I mention to the staff that Ronnie is Deaf (after they talk to him and appear baffled that he doesn't respond), they then just stop talking to him. All conversation is directed at me. I keep signing back to Ronnie, but he should be able to handle most of his own appointments now that he is older. The medical staff doesn't give him the chance to do that.

Unlike at the urology office where Ronnie and I feel valued and respected, I feel like we are a bother to a lot of the staff at the nephrology office. Since Ronnie and I do like the doctor, we are going to keep trying, but the staff needs to realize that they don't want to get me too angry. Just ask my school district special education staff.....

Oodles of Ologists

In the last couple of weeks, we've been to a neurologist, a rheumatologist, a nephrologist, and an urologist. I'm really tired of ologists...

But a lot of good has come out of all those visits.

Ashley's seizures are slightly more controlled. She started on a new medication and had an old one removed. The new med seems to be doing a good job, and she's not even up to full dose on it yet. In addition to fewer seizures, she also seems to feel much better which makes her happier. Score one for the neurologist.

Ronnie saw a new nephrologist and reports are good. His kidney disease is stable - not better but not worse either. The doctor thought Ronnie looked very healthy and is encouraged that we can keep a kidney transplant at bay for quite a while longer. Score one for the nephrologist.

Ronnie also saw his urologist. The bladder surgery he had last summer has improved his overall health, and is no longer a contributing factor to his kidney disease. Score one for the urologist.

My rheumatologist has tweaked my lupus and rheumatoid arthitis medications a bit, and I can already see a little positive change. Score one for the rheumatologist.

Okay, so maybe ologists aren't so bad after all!!

Seizures - 1 Medication - 0

In the last 10 days, Ashley has had an MRI under anesthesia to check for tumors on her brain stem and spine, and she had her 6 month checkup with the neurologist. She and I have both been very busy trying to figure out why we are seeing an increase in the number of seizures she has each day.

Ashley is on four different seizure meds - Depakene, Trileptal, Keppra and Topamax. Yet she was still having 3-4 seizures a day. About a month ago those numbers went up to 6-8.

Her seizures are not usually bad - just lasting 45-60 seconds each. She seems to be able to tell when one is starting, and she will get herself to a safe position, not allowing herself to fall once the seizure gets underway. Afterwards, rarely is she sleepy. In fact, she is often in a much better mood - almost like the seizure cleared some of the fogginess from her brain.

But, she has had life=threatening seizures in the past, and with each of the not-too-severe ones she has, I think back to the times when things were really bad. So, I keep a close eye on her seizures, a close check on her meds, and schedule frequent MRIs.

The good news today is that the most recent MRI did not reveal any tumors on her spine or brain stem. She still has three on her brain, but they are not growing and don't need to be removed at present.

The news from the neurologist wasn't quite as good. Since the four current medications are allowing the seizures to become more frequent, he is adding a fifth one. It is a new medication called Vimpat. I need to do some research on it, but he listed one of the side effects as sleepiness. I'm not wild about that. I'm also not wild about her being on 5 medications...

So that's the Ashley update for now. If anyone has any experience with Vimpat, I would love to hear it.

Sleeping Beauty

Ashley had yet another MRI under anesthesia last Friday. She was already having them twice a year to check the status of the three brain tumors she has, but this time, her neurosurgeon ordered an MRI of her spine to make sure no tumors were present on the brain stem or the cervical spine. Ashley has been experiencing some slight right-side weakness, and the neurosurgeon said he would rather be proactive about checking.

I agree with that approach, but still don't like it. The MRIs under anesthesia are incredibly difficult for her.

She knows what is going to happen as soon as we pull into the hospital parking lot. She tries really hard to be brave, but her anxiety kicks in after just a few minutes. It doesn't help that the MRI staff seem to move in super slow motion. The longer she sits, the worse the anxiety gets. But the time the staff is ready for her to get on the stretcher, she is in all out refusal mode.

We've tried a couple of things to try to make the process easier. One thing we have tried is giving her Versed via her G-tube. According to the manufacturer, "Midazolam is given to children before medical procedures or before anesthesia for surgery to cause drowsiness, relieve anxiety, and prevent any memory of the event. Midazolam is in a class of medications called benzodiazepines. It works by slowing activity in the brain to allow relaxation and sleep."

Sounds good, doesn't it? Well, it doesn't work all that well for Ashley. If it reduces her anxiety, I'm not seeing it. She still fights for all she is worth when it's time to move to the stretcher. Friday, it took two strong men and a nurse to get her in what appears to be a great wrestling hold, and then move her to the stretcher. Another nurse had the mask for anethesia on the ready, but Ashley still ripped it off her face and broke it. In addition, whenever we use the Versed, she is slow - really, really slow - to wake up after the procedure. And that scares me beyond words.

The other thing we have tried is Ketamine. According to Wikipedia, "Ketamine has a wide range of effects in humans, including analgesia, anesthesia, hallucinations, elevated blood pressure, and bronchodilation. Ketamine is primarily used for the induction and maintenance of general anesthesia, usually in combination with some sedative drug. Other uses include sedation in intensive care, analgesia (particularly in emergency medicine), and treatment of bronchospasm. It has been shown to be effective in treating depression in patients with bipolar disorder who have not responded to other anti-depressants."

Ketamine knocks Ashley out in less than 30 seconds, but the side effects frighten me.

I want there to be another solution...

Here are some photos from Friday (sorry for the poor quality. I was using my cell phone):

Ashley is waiting in a small room adjacent to the MRI room and watching TV while we wait...and wait...and wait. This is early on so she is not too upset yet.



Ashley is in the recovery room. This is exactly how she looked for 4 straight hours. See why I am so scared?



Even on the trip home, she is still half asleep. And, she stayed 'out of it' for the rest of the day and night.



Now we have to wait until Tuesday to see if the MRI revealed anything :(

Holistically Speaking

This weekend my family and I attended the kickoff picnic for another year of Va LEND mentorship. Va LEND is a program of study at our local university in which professionals team with families that have children with special needs. It is a year long program that affords the trainees the opportunity to see really in-depth what life is like on a daily basis when one is raising a child with special needs.

We’ve been participating as a mentor family for 10 years, and have had a pediatrician, an occupational therapist, several teachers, and a physical therapist, just to name a few, as our trainees. I think it is really a wonderful opportunity for the trainees to see the bigger picture and for the families to understand the stresses and viewpoints of the professionals. But all this got me to thinking….

When Ronnie recently went through his bladder surgery, the doctors told me a lot about the surgery itself, but they didn’t tell me what life was going to be like for the six weeks following surgery when Ronnie was recuperating at home. The doctors didn’t intentionally leave out that information – they just didn’t know it. Their perspective is clinical. My perspective included sleeping, eating, bathing, bandaging, going to appointments, and dealing with catheters that failed hourly.

I believe that if I had a glimpse into what life was going to be like post-surgery, my stress level and Ronnie’s would have been lower. I could have made arrangements for the things I would need before the surgery, not after. I could have worked out a nursing schedule that made everyone more comfortable. I could have stocked up on easy-to-prepare meals, and done as many errands as possible.

Even while Ronnie was in the hospital, I wished someone had told me what to expect – not the surgery details – the doctors did a great job of that. But things like packing pajamas for Ronnie was a waste of time because he wouldn’t be able to put them on due to all the catheters. Or, preparing myself and Ronnie for the fact that he wouldn’t be able to eat for a long while after the surgery. Or, making sure I had an easy way to get him home when he was discharged. Even knowing that I could get a week long parking pass from the hospital at a reduced rate.

So, I think the doctors need a mentor family for their patients that will be going through similar surgery.

If another family was facing bladder augmentation surgery, the doctor could refer that family to me. I could help them understand the daily challenges, the emotional toll, and the needs to expect once they returned home. I could even be at the hospital holding their hand if they liked.

Doctors are often not as warm, not as comforting as another parent can be. The doctors do their jobs very well, but don’t have the time or perspective to go that next step of providing the day-to-day support a family needs.

It’s time, in my opinion, to treat the family, not just the patient. What do you think?

Your Experience?

Do you or your children take the medicine Risperidone? It's sometimes called Risperdal. Ashley has been taking it for many, many years, and I believe it was first prescribed to help with what we viewed at the time as aggressive behaviors.

Risperidone is often prescribed to children diagnosed with Autism. Ashley is not diagnosed with Autism but many of the behaviors related to Deafblindness are very similar. Here is a better description from the National Institute of Health:

Risperidone is used to treat the symptoms of schizophrenia (a mental illness that causes disturbed or unusual thinking, loss of interest in life, and strong or inappropriate emotions) in adults and teenagers 13 years of age and older. It is also used to treat episodes of mania (frenzied, abnormally excited, or irritated mood) or mixed episodes (symptoms of mania and depression that happen together) in adults and in teenagers and children 10 years of age and older with bipolar disorder (manic depressive disorder; a disease that causes episodes of depression, episodes of mania, and other abnormal moods). Risperidone is also used to treat behavior problems such as aggression, self-injury, and sudden mood changes in teenagers and children 5-16 years of age who have autism (a condition that causes repetitive behavior, difficulty interacting with others, and problems with communication). Risperidone is in a class of medications called atypical antipsychotics. It works by changing the activity of certain natural substances in the brain.

And here is a list of some of the negative effects of Risperidone:

The most common adverse reactions observed in all clinical trials with RISPERDAL® occurring at a rate of at least 10% were somnolence, increased appetite, fatigue, rhinitis, upper respiratory tract infection, vomiting, coughing, urinary incontinence, increased saliva, constipation, fever, tremors, muscle stiffness, abdominal pain, anxiety, nausea, dizziness, dry mouth, rash, restlessness, and indigestion. Tardive Dyskinesia (TD) is a serious, sometimes permanent side effect reported with RISPERDAL and similar medications. TD includes uncontrollable movements of the face, tongue, and other parts of the body. The risk of developing TD and the chance that it will become permanent is thought to increase with the length of therapy and the overall dose taken by the patient. This condition can develop after a brief period of therapy at low doses, although this is much less common. There is no known treatment for TD, but it may go away partially or completely if therapy is stopped.

Obviously this is a pretty powerful medication. What worries me is not the weight gain that Ashley experienced from taking Risperdal, or to some degree some of the other side effects such as urinary incontinence, and a general appearance of being 'foggy' most of the time. My biggest concern is the chance of Tardive Dyskinesia.

With ever increasing frequency this summer, I have noticed facial grimacing and other uncontrolled movements. Although Ashley is on a very low dose (.5 mg), she has been taking Risperdal for many years, and often the TD will appear after several years.

We don't see Ashley's neurologist again until early October, but I have made the decision to reduce her dose slowly. I'm just curious what other's experience with this drug might be.

Reclaiming Our Space

Since Ronnie came home from the hospital, we have had CNAs (Certified Nursing Assistants) helping with his care. When he first came home, that care was all consuming – bathing, toileting, dressing, wound care, etc – and it was so nice to have an extra pair of hands to help me with that. I am very thankful that Ronnie’s social worker and her agency realized that I needed the help and were very quick to provide it. But now I’m glad those services are drawing to a close.

Ronnie can take care of almost all his needs now. His surgery wounds are healed. He doesn’t need help with lifting or transferring. He can take a shower all by himself. He dresses himself. In short, he is back to pre-surgery form. So, the CNAs are no longer needed, and for that I am glad.

I’m sure like for many people in the world of personal assistance, the pay isn’t good for the CNA. That means that usually the ‘cream of the crop’ folks are not drawn to that career choice. We had two CNAs that seemed interested in doing a good job, but we had several more who were not good at all. Even the ones that were passably good were often late, needed to leave early, or had some other drama in their lives that ended up having an impact on Ronnie and our family.

And I was just really uncomfortable with a string of strangers in my house.

I don’t know how the families do it that need full-time nursing care for their children. Even around the clock care. How do they adjust to having people around while they sleep and otherwise go about their daily routine? And that daily routine is exactly what was disrupted for me.

I need my routine. My children need their routine. And no matter how good the CNA or nurse might be, routines have to change to accommodate them.

We only have one more day – today – with a CNA, and I am so looking forward to having my life back.

Does any of this make sense?

Two Down, One To Go

When Ronnie had surgery a month ago, he came home with three different catheters coming from his body. Two were designed to keep his bladder from filling because he had just had a bladder augmentation procedure. The other was from a Malone procedure, a re-routing of a part of his bowel to make life simpler for him.

The first catheter to go was one from his bladder. But the second one had to stay in another 2 weeks. I'll spare you the details of why he and I both HATED that last bladder catheter because I don't want to cause you to lose your breakfast, lunch or dinner.

Today, though, we celebrated! The second catheter from his bladder was removed!! After an imaging study to make sure there were no leaks in his bladder, the doctor yanked the catheter out - Ronnie yelped - and then smiled!

Even though we now have to collect data on the volumes removed from his bladder, it is WONDERFUL to not have that second catheter. He can now actually start wearing his own pants and not have to continue to borrow the large size from his brother.

In another month, the very small catheter still in place because of the Malone procedure should be removed and replaced with a Chait Trapdoor - something very similar to a G-tube Mickey button.

My goal was to have Ronnie all recovered in time for school, and I think we just may make that!!

Way to go Brave Boy!!

Not Quite Yet

Ronnie had his first follow-up doctor's appointment today with the urologist. We were all really hoping that he might agree to remove two of the three catheters that Ronnie came home from the hospital with. But sad to say, that was not to be today.

Ronnie's urologist is ultra-conservative. But, he's one of the best. So, if he thinks it is best to leave the catheters in a while, I believe it will be for the best.

So, for at least another week or two, Ronnie will have three catheters, and two collection bags attached to him at all times. It really makes transfering from his wheelchair to the couch, bed or bathroom facilities difficult, and those transfers always require assistance. The good news is that by the time school starts in early September, all the 'connections' will be history and Ronnie will once again be one of the gang. The doctor said Ronnie is looking great, and that he's really pleased with Ronnie's progress.

Today was also my first day back at work in two weeks. It felt really strange not to be donning exam gloves, and I may have slipped a few times and asked my co-workers if they needed their catheters flushed :)

Dr. McYummy Day!

Today is Dr. McYummy day! Ashley and Ronnie will be visiting their neurosurgeon. I'm anxious to get the results of Ashley's MRI, and the handsome doctor will also be checking out Ronnie's shunt.

I'm very nervous about the MRI results, but figure if there was anything major, the film reader would have contacted the doctor and he would have contacted me. But still, I'm worried.

And Ronnie is worried also. The last thing he needs right now is problems with his shunt. He isn't exhibiting any symptoms that make me think there is something wrong. This appointment is just to establish a relationship with the doctor and Ronnie.

Hopefully tomorrow I will have good news to share with everyone. But until then, here's a little bit of good news. During a trip to the pharmacy this past weekend, I needed BandAids. Imagine my surprise when I found that the BandAid box had Braille on it!!! I'm very impressed....

Friday and Saturday

FRIDAY:

Ashley's MRI went ok. She's been having these every 6 months for the past three years, and I hoped that over time she would get used to the hospital, the people, and the procedure. She seems to have done that to some degree.

The first couple of years, she was so anxious when we arrived at the hospital that she was given a medicine to relax her prior to the actual anesthesia. That worked well except for one thing. When she had that medicine in combination with the anesthesia, she was really, really slow at waking up. That scared me to death.

But the last time (prior to Friday's visit), she seemed relaxed enough to skip the first medication. We still have a bit of a struggle getting her onto the stretcher, but after the procedure, she woke up quickly and was ready to go home. She was almost back to her normal, happy self by the time we arrived home.

On Friday, the staff moved quickly, and we didn't have to wait long. Because of that, I decided to skip the first medication again. She was fine until she saw the stretcher. There was no way she was going to get on it.

I tried bribing her with the nurse's watch. I tried my sweet mommy voice. I tried my stern mommy voice. Those things were all a waste of time because Ashley was NOT going to get on the stretcher.

Keep in mind that Ashley is 15 years old and as strong as a WWF wrestler. Even though I tried to physically get her on the stretcher, it was a task that was doomed to failure. At that point, the anesthesiologist suggested we try a different kind of medication - Ketamine. He said it was a shot and would start to work in about 3 minutes. I agreed, and at exactly 3 minutes, Ashley got loopy. It still took the anesthesiologist holding her top half and Chip, my 19 year old son, holding her bottom half to get her on the stretcher, but finally she was there and nodding off.

I worried that she might have a tough time waking in the recovery room after the Ketamine. She woke up pretty quickly but she was loopy for almost the rest of the day. Like a drunken sailor....

Chip and I got her home and she spent the rest of the day on the couch. I'm not sure how I feel about the Ketamine though. I may have to do some research before agreeing to use it again. I really didn't like seeing Ashley so out of it for so long..

SATURDAY:

We couldn't have picked a worse day to go to Busch Gardens. I figured it was early enough in the season that it wouldn't be crowded yet. What I didn't take into account were the thousands of middle school music students from across Virginia who were there to do something musical....Not sure what, but really sure that it was super crowded.

Each school district had their students in matching teeshirts. I stopped counting the different colors of teeshirts the students were wearing, but it was like a giant rainbow had vomited all over the park.

Now I like middle school students, but I have decided that I only like them in small numbers - less than 100, for example. It was really difficult pushing two wheelchairs through the crowds, and the lines at all the rides were just too long to wait in. Add to that the 85 degree temperature, and our first visit of the season was a disaster.

We have season tickets, so we will be going back frequently. But, since this was Ronnie's first visit, he was not very happy. He wanted to stay and do more, and no amount of reassuring him that we would be back would work.

Hopefully he will forgive me, and maybe, just maybe, I will spring him from school early one day and we will go without the crowds!