Dear Son Medical Update~Follow Up Appointment

Dear Son had his follow up appointment on Wednesday with his pediatric neurologist. He functions as Dear Son's primary physician as well, since he's considered medically complex. We discussed many issues, but the main ones were Dear Son's choking on his saliva, his inability to sit for very long and his inability to move his legs and feet.

As you may recall, Dear Son was on the Scopolamine patch to dry up his secretions and last month it was determined that the patch was causing urinary retention (so much so that his bladder was huge) and most likely was a source of his pain. As a result, the patch was removed and they recommended that we try a Scopolamine gel from a compound pharmacy however it was unsuccessful. As a result, Dear Son was put back on the patch and did not seem to have any issues with it. The crying that they had assumed was caused by urinary retention did not return. Ironically, the crying seemed to dissipate as well once the pneumatosis was gone; the CT scan on February 3rd confirmed this. Dear Son remains on the patch and the bulk of his crying is gone so I have to wonder if the pneumatosis was really the source of his pain.

Since the choking on his secretions was so bad, the neurologist spoke with the ENT regarding possible surgical intervention to remove the salivary glands. Of particular concern was whether or not Dear Son could handle the sedation (it causes respiratory depression and Dear Son can't clear his airways) and the surgery in general. Surgery is a huge risk for Dear Son because of the sedation and the risk of aspiration. In addition, I had concerns about the surgery because Dear Son's only means of communication right now is to cry out or moan when he needs to be changed. The surgery would make that harder.

The ENT seemed to feel that the surgery would be fine. The neurologist asked him about the extent of the pain from the surgery and the surgery in general. The ENT seemed to feel that even with Dear Son's issues, it was doable. The surgery is fairly involved so that doesn't mean it would be easy but he felt he could do it with minimal complications. I asked if they would recommend doing one side or both and they said they'd do both sides.

In addition to the secretions, Dear Son still had some pain when sitting in the recliner. I noticed that he had pain when I raised the footrest and screamed out when I lifted his leg to put foot cream on him. He has continued to have some pain when sitting in the recliner and can't seem to sit for more than one hour or one hour and fifteen minutes without fussing.

One other major concern that I had, was that Dear Son has not really been able to move his legs, his feet or his toes over the last three months. Typically, I do expect some deterioration after a hospital visit but this was quite pronounced since Dear Son's legs were always the most active part on him. He could swivel the recliner by moving his feet, he could rustle his legs in his bed and he could kick the wall if needed to let me know he needed to be changed (Dear Son has no language so he would yell out or kick the wall when he was in bed and needed changing.). He can't do any of that anymore. I did notice that he had maybe two or so times over the last three months where he moved them slightly, so I know they aren't paralyzed but overall, it's a significant difference. It's a concern as well when he's sleeping too since he does not move his legs at all once I turn him over. I must fully position his legs, his arms and his entire body otherwise Dear Son can't move at all. His inability to move further increases the possibility of bed sores or a skin breakdown however I am having to turn him over more and to date, he doesn't have any breakdown.

The neurologist checked his legs and noticed severe tightness. He also had concerns about Dear Son's spinal cord and recommended an MRI. An MRI of the spine can be dangerous for Dear Son due to the sedation necessary and typically spine MRI's are longer than a brain MRI. The neurologist felt it would be doable though since the brain MRI in January was successful and because he could request limited views. MRIs are typically done on an outpatient basis and my concern was that for the brain MRI, we had to convert Dear Son's seizure meds to an IV for the MRI, to prevent aspiration. (Also, they removed his Scopolamine patch and changed him over to Robinal, along with stopping all feeds prior. The side effects from the sedation caused low blood pressure and respiration which were resolved with a bolus of fluids but it takes a few hours until he's back to normal.) My concern was that this would be difficult to manage on an outpatient basis. The neurologist didn't feel however that the insurance would cover this procedure as an in-patient so we'd have to hold off until he was admitted again.

Other things I asked about was the Miralax. Dear Son became constipated once that was removed last month. As you may recall, they removed the Miralax and changed some of his medications to pill form since they had Sorbitol in them; medication, Sorbitol which was one of them, can be a cause of pneumatosis. When Dear Son became constipated, I attempted to give him prune juice, but did a google search and found out that prune juice had Sorbitol in it so I couldn't do it. When I called the neurologist, he put him back on the Miralax, but every other day. Since then, we haven't had any more issues and I wanted to know if it was o.k or if we needed to get another CT scan to check for a pneumatosis. He said we should be fine.

I had a few other issues to discuss with him but overall the neurologist felt that Dear Son had deteriorated significantly and that his disease is progressing. In light of that, he asked me what I wanted to do regarding the surgery and I said that I didn't want to drive that issue. We talked some more and I asked him if we were to do the surgery, is this something we need to do now or later and he felt if we did it, we should do it now since he won't be able to manage it later. He told me that there is a chance Dear Son would need to be intubated after the surgery and that the intubation could be quite lengthly. He explained that Dear Son will die of respiratory issues. I did not get the sense that he felt Dear Son would really make it through the surgery even though the ENT thought the surgery was doable. I also had some difficulty in doing a surgery so soon after we had been released. My gut tells me that Dear Son would not survive this surgery. I saw how hard it was in November for him to breathe and I can't imagine doing that again. In light of his respiratory issues, I suggested that we wait three months or so and then revisit this decision. That would give me time to get the therapy vest and a suction machine. (I have a low durable medical equipment limit and I needed to wait for the January hospitalization to be paid in order for this equipment to be covered at a higher percentage. Otherwise, it would go as the deductible and the secondary insurance doesn't cover respiratory conditions.) I need to order the vest and the suction machine regardless but if he did have surgey, then at least I would be prepared when we got home.

Overall, I don't think Dear Son is doing that great. While he's not crying much anymore, other than when he sits, he still is quite weak and sleeps most of the day. He moans when he sleeps at night and requires a small dose of Risperdal to help him sleep and an antihistamine to help further dry up secretions. I asked about the possibility of returning to school, since I wanted to help get his feet moving again and I think it would help his morale. School had stated that he couldn't return unless he could sit for 2.5 to 3 hours. I said that I don't know what Dear Son is capable of doing until we try it. He can sit briefly and could perhaps make it to school on the bus and if they lie him down once he gets there and alternates the sitting and lying down, it would be doable. Also, they could work on his legs in PT. He agreed to a few hours or half day once a week.

So in summary, he felt that Dear Son had deteriorated significantly. We agreed to revist surgery to remove the saliva glands in three months and we'll do an MRI as soon as we can. In the meantime, he can return to school. I contacted school and explained the situation to them and they agreed to try it. They are very excited to have him back and assured me that the classroom was all ready to go and they could manage him.

Dear Son will return to school next Friday, for a half a day or a few hours or so. I'll let them work out the times and once they get the bus scheduled, we should be good to go. They asked me what day of the week would work best and I said Friday because every Friday at school is, "Fun Friday" where they play color bingo, have music therapy and do fun stuff. At this point, that is what Dear Son needs the most. He needs some fun and to be around his friends again. I think going back to school will be a very tall order for Dear Son. I can't say that I think he's really ready although if we don't try to get him back, he'll never go back again. I really think we need to try to get some functional movement again, if possible.

And finally, we discussed the Make a Wish trip. Dear Son can't go until he can sit up and sustain the plane ride and getting to the airport. We need to see how school goes and if he can get through that, then we can re-evaluate whether or not the trip is doable. If he can't get through that, I don't suppose he'll ever be able to make it. I think I already know that but I suspect we'll know more in a month.

Dear Son~School Visit

As you may or may not know, Dear Son has not been able to go to school since he got the swine flu/viral pneumonia in November. Although he has recovered from those, he is still not able to sit up very long and he is unable to clear his airways; since he can't clear his airways, he is not allowed to return to school until cold/flu season is over since if he got sick, he might never recover. His last day of school was at the end of October. In the meantime, we got a visit from his teacher and his aide (CNA). She brought him a little scrapbook they made at school to show him what they have been doing. He really enjoyed it!


He also enjoyed visiting with his aide, although I didn't get a picture of her. I didn't realize I didn't take it until later! Dear Son was having such a good time with his teacher that I couldn't help but take out my camera.

During her visit, we talked about going back to school, maybe starting with some home visits and then a trial visit to school. Today, I received notice that they will require him to be able to sit up 2.5 to 3 hours at a time. Currently, Dear Son can't sit for more than an hour without being in pain so we are a long way away. We really need to get him back in school, not only for his mental well being (He is happiest when he is around other people.) but to help him move his feet and legs again. Prior to the November hospitalization, he could move his feet and legs in his bed, he could move his feet to swivel the recliner and move his toes. Now, he can't move his feet, legs or even his toes on his own. (This is problematic, since I need to keep moving him so he doesn't get pressure sores.) His only means of communication now, is a moan, or if I ask him if he wants to turn over in his bed, he'll move his shoulder slightly to let me know he wants to be turned. In addition, prior to the hospitalization, when I turned him over in his bed, he could move his arm for me; now when I go to turn him, I have to move his hips and then move his arm. I am hoping the physical therapist can help him with that to make it easier for him and for me.

After she left, she followed up with a video of Dear Son at school last year, however blogger couldn't process it. I tried last night for a while and today as well however blogger has known issues with video processing; for some reason it hangs in the processing mode. If anyone has a work around, I'd love to hear it.

We follow up with the neurologist next week.

War and Peace

Some days you can’t help but think, when the ax might fall. It’s times like these, when I am alone at home, and Dad has Dear Son, that I think about that. Times like this when I have time to paint my nails and not worry that I’ll ruin them if I’ll have to change a diaper. Times when I can do whatever I want, because there is no one to care for. You revel in the solitude, the peace and the quiet, but are careful not to enjoy it too much for fear it could be permanent. A little dose here or there, is a luxury, but permanent silence would be deafening.

I don’t suppose we give much thought to when someone might die but this isn’t a normal situation. We have a child who we know has been very, very sick and it’s only a matter of time before we lose the war, even if we’ve won the last battle. War changes you over time. You can no longer imagine time alone when you’ve been in every battle together. I’ve sat at his every bedside, wiped his little brow and doted over his every breath. When you are together at the hospital, you wait for the time when you can get out and go home. As you imagine the end of the battle, you can’t help but be swept away by thoughts of the war and when your real life will begin. Instead, your life is always a catch 22, where you eagerly await the time when you can begin your life, once the war is over, only to lose your best friend in the battle and have nothing to return home too.

It’s tough sometimes too, when people die, especially after a long battle. It doesn’t matter if you know them or not, just hearing their story on the news, whether it’s a celebrity, a politician or just a random local news story can evoke a reaction. The bigger the figure, the more you are affected. You can’t help but be affected because you know deep down, that your own war is nearing the end, and when someone else dies, you imagine your own battle and how it will end. And when they die, you feel like you’ve somehow dodged a bullet, because you know your end is coming. The tears you cry for them, often catch you by surprise, but your tears are never really for them, they are for you. They are yours because you realize just how close you are to the end of your own war. When that happens, you can’t help but hug and kiss your child, as if they had run out into the street and dodged a speeding car. It’s as if doing this somehow, prevents the end to your own war.

It’s strange too, when you’ve been in the trenches together. There is peace in the battle, knowing that you are together, even if only in the same room. That is where the battles are won, even if only briefly. It’s there that they tend to the wounds of the battle only to release him to find out that the battle isn’t really over, it’s just that the location has changed. You leave the battle as scarred as they do, only your wounds are inside. Whatever physical scars they have from the battle, have been internalized by you. It’s like watching a war in 3-D, somehow you feel you’ve been in it too.

During the war though, you learn to value the soul. The battle scars or bucket of parts is sometimes just that, a bucket of parts, some of which still work and others, not working so great. At some point, you stop worrying about the physical skills and what they could do and focus instead on the person within, for therein lies their soul. That is the person you know and love. It matters not what they can and can’t do because you love them regardless. Over the years, you cherish the child they were and the man that have become. War does that to people. You learn that the time you spent together was not just for him, but for you too. Their battle was your battle and you never look at any war the same way after that without being affected. As you get near the end of the war, you realize that the life you imagined after the battle, may never live up to the war.

And those times of solitude, can be a grim reminder of what is to come. I am always careful not to enjoy them too much. And when the time comes, when Dad brings Dear Son back home, and the front door opens and I see his shining face, I make sure to kiss and hug him really good. I am thankful for the opportunity to care for him once again. Once again, the battle rages on. It’s a good kind of battle though, because it means the war hasn’t ended. And as his mother, I'll do what I can to fight until the very end. After all, I have my little buddy to take care of…and that’s a very good thing.

Note: Dear Son is eighteen years old and suffers from intractable seizures, dystonia and severe mental retardation as a result of a random mutation of the ARX gene. In addition, he suffers from a progressive neurological disease.

A Valentine's Day Tribute to Dear Son

This, I will remember,
when the rest of life is through,
the finest thing I've ever done,
is simply loving you.

Happy Valentine's Day Dear Son...thanks for the memories.

With love,

Mom

Note: Poem is by Robert Sexton

The Chair

Photo of Dear Son, Age 11

I remember the conversation distinctly, as if it were yesterday. The geneticist told me that a disabled child’s average lifespan was five years after they first started declining. In my mind I knew exactly when that happened. For Dear Son, that year was 2004. That was the year he got his feeding tube put in, just for meds, and the surgical nurse who did all follow up visits kept messing with the size every time he had a visit, trying to find the right size but to no avail. The tube was either too tight or too loose. It wasn’t long before Dear Son began vomiting. He vomited on and off for seven months and had numerous hospitalizations before the radiologist, Dr. X, figured out the too large feeding tube was blocking a small pyloris (the stomach opening) and not allowing the food to empty. In addition, it scratched his entire stomach, leaving multiple abrasions that were easily viewed from the upper GI. And the food, well, it just sat in the stomach until it putrified and then he would throw it up. He was hospitalized month after month that year with no results until that last hospitalization in December of 2004/January of 2005 was when they figured it out. Unfortunately, by that time, Dear Son was weak. He slept the next ten months or so and never recovered. He wasn’t able to go to school. Prior to that error, he was a happy young man, who walked on his knees. Yes, he could walk on his feet with his leg braces in a special gait trainer, but for home use, he walked on those knees. Needless to say, I’ve never forgotten that nurse or that hospitalization. It was the beginning of the end.

Photo of Dear Son, age 13, in January 2005, after he was released from the hospital, where he lost of a lot of weight from the feeding tube error.

A few years prior to that, I had purchased a rocker for him. My husband and I had been looking for dining room chairs for our kitchen table and were in a furniture store. They had a wonderful maple rocker there and as Dear Son started to fuss in his wheelchair, I placed him in the rocker. He loved it. So much in fact, that we bought it for him. He used that rocker for years up until that hospitalization.
Photo of Dear Son's first rocker; he had almost outgrown it at this time. He used this rocker for about nine years.

After that hospitalization and recovery, he needed more support. The maple rocker was fine but with his long legs and lack of tone, he required more back support. It was hard finding a rocker for him with a tall back. With a rocker, Dear Son was able to rock and to scoot the rocker around a bit to get around the house. Granted, he couldn’t go far but it did give him a little independence to look out the window or to spin around and watch t.v. Since he needed more support, a regular chair wouldn’t work very well. Soon, I found a taller rocker with a wide back, much like a Windsor chair. With that rocker, he was in business again and could look out the window. It was important to keep him active. At least if he couldn’t walk on his knees, he would still be able to use the rocker. Photo of his next rocker.

Soon, he outgrew that one as well. More important though, was that the rocker wasn’t sturdy enough to move him. He soon lost his ability to move around very well by himself in the rocker. He could no longer use his feet to turn the rocker and I’d have to turn the rocker with him in it. This required a sturdier rocker with a tall back and more support. After looking around, I found this rocker on-line. I went to check it out and it was perfect.
Photo of his last rocker.
That rocker lasted a year or two until Dear Son grew some more. By this time, he was pretty tall. Not only were his legs longer but his torso had grown. No longer could he sit upright without falling to the side or falling forward. His progressive disease was kicking in and he could no longer sit upright on his own. It was then that I had to move him from the window, which he loved to look out, to the dining room table. From there he would sit at the table and look out the window. Sometimes, he’d lie his head down on the table. But it wasn’t long before he couldn’t do that and soon, he couldn’t lift his head up but instead would just lie his head on the table and listen to music. Photo of Dear Son listening to his Mr. Christmas music box.

But last year, he lost that ability. Soon, he had no tone and when he’d lie his head on the table, it left big red marks and he would cry. It didn’t matter if you put a pillow or anything on the table first, it was just that he couldn’t support himself and the weight of his head was too much. By that time, we knew we had to get him more support so we got him a recliner. The recliner would support him more and the swivel action would allow him to turn the chair so he could watch t.v. or look out the window. Photo of his recliner that swivels.

Photo of Dear Son in August of 2009.
But that’s all about to change. He’s been falling over to one side in the recliner for a while now so I have to prop him up. He no longer uses his feet at all to swivel the recliner. Instead, he sits exactly where you put him. At times when he sits there, he looks like an old man in a retirement home, one with dementia who has lost his ability to move. The only difference is that Dear Son is much younger. He’s getting tired though. Not only does he cry from the pain from sitting but he just looks exhausted in the chair, as if his body can’t do any more.

After I got the recliner, I moved the other rocker out of my living room and into the garage. I placed it near the gait trainer that he no longer uses and hasn’t used in five years or so. Somehow getting rid of them is hard. It means he’ll no longer use them. I know that, but the reality is that those items represent the life he once had. If I get rid of them, I must admit to myself that he’s getting progressively worse. As parents, it’s easy to see our children in terms of their milestones, their first shoes, their first words, etc. As parents of special needs children, we wait a long time for those first anything’s to occur. Now, we no longer count the milestones that he has achieved, but the ones that were taken away. Who needs a health history when you can just look at the chairs? And one of these days when he's lying in bed, I'll look back at the chairs, and remember the good old days, when he could sit.

Note: Dear Son is eighteen years old and suffers from intractable seizures, dystonia and severe mental retardation as a result of a random mutation of the ARX gene. In addition, he suffers from a progressive neurological disease.

Check out these Kitchen Design finalists...

If you get a chance, you might want to pop over to Kristin Drohan's Boulevard Interior Design's blog today. She has the National Kitchen and Bath 2010 kitchen design finalists. My favorite kitchen is the one above. If I were designing it from scratch, I'd probably opt for crystal chandeliers and a little softer palette, maybe green, for the walls and rug. They have some beautiful finalists though. And if you haven't checked out Kristin's blog before, she has an Eco-Friendly Furniture Line.

Dear Son Medical Update~Finally, A Smile

This past week has been mixed. The good news is that Dear Son has been sleeping better since the new regime I started last Friday. The new regime involved an extra can of formula and .5 ml of Risperdal at midnight, on the nights that he moans in his sleep, which has been every night except one. With the extra formula, he's not waking up hungry at 3:30 -5 for his formula to be started. In addition, after a few days of this regime, he started to seem like his old self. He would smile and be happy at times. I started talking to him about his "Make a Wish" trip and the possibility of going back to school, once he's feeling better. He smiled when I talked about that and he hasn't done that since October prior to the whole swine flu hospitalization.

The bad news is that he is having major issues with saliva. The scopolamine patch isn't controlling his secretions very well and I am afraid he will choke on them. In the past, it was not uncommon from time to time that Dear Son would have times where the patch didn't work as well as others. I don't think it's the patch as much as it is the fact that some days, things are worse than others for him and some days he may have more secretions than others. On Wednesday night, he was up virtually the entire night trying to breathe. I will be ordering the therapy vest and a suction machine shortly, as soon as the January hospital bill is processed. Once that is done, we should meet our deductible and be close to the stop loss, so it shouldn't cost as much. I did try to do some chest pt this week but he seemed to scream out in pain when I did his upper right lung. I am not sure why since he is not presenting with a fever which means there isn't a respiratory infection.

The other major issue is that he still can't sit up in the recliner or sit up without pain of some sort. On Tuesday, we took him for the CT scan and he fussed in the car all the way down and all the way back. I sat in the back seat with him so I could hold his hand and comfort him. His hand was shaking as well at times so I am not sure if he was having some seizure activity to boot. While we were in the waiting room, he continued to yell out and make noise most of the time.

After the CT scan, we attempted to get lab work however they were not able to get any blood. The patch makes it very difficult to get blood from him so after 35 minutes or so, I said that was enough and took him home.

I called the neurologist today since Dear Son's saliva issues were fairly bad. He suggested adding an antihistamine at night to help dry up the secretions. He said it would be short acting and would help get him through the night. I thought this was brilliant. I hope it works.

We also discussed the CT scan. The pneumatosis is completely gone, so that is the good news. The bladder is still very large. There weren't any other findings to explain his pain from sitting. Interestingly enough, I got to see the CT scan while the tech was doing it. Dad was holding Dear Son on the table and the tech suggested I take a seat in the room with him. I saw the curvature of his spine and asked the tech if it was the test or if his spine was curved like that and he said it was his spine. I don't know if that is playing a role in his sitting issues.

In addition, Ped Neuro Doc e-mailed the ENT last week with regards to the saliva issues. He recommended two options: botox and removing the submandibular and parotid glands bilaterally. He said he'd prefer the first option since it's a reasonably involved surgery. I reminded Ped Neuro Doc that we already had the botox surgery/injections in January 2008 and it was unsuccessful. He'll speak with him again with regards to next steps. If he does choose the surgical option, I'd like to have some discussion as to where one or both sides should be done. In the past, Ped Neuro Doc suggested one side be done. I'll let them figure that out.

As far as urinations with the patch, they remain unchanged. I am tracking his output and the number of urinations seem to be the same as without the patch. As of yet, I don't think there is pain with that. Dear Son does moan at night and I am unclear if that is from the pain from urinary retention or something else but overall he seems better this week other than the secretions. On the back burner is the bowel movements. The frequency is slightly less and the volume is a lot smaller so I hope he's not backing up. I have been feeling his abdomen to make certain it's not hard or distended as of yet and when I push on it, he doesn't seem to be in pain. Without the Miralax, I think we need to keep an eye on that.

Overall, I would really be glad if this were over soon. It was very stressful on Tuesday taking him for the lab work and CT scan while worrying he might catch something down there and be back in the hospital. I didn't realize how traumatic that was for me. In addition, we have to get things back to normal soon. He is still sleeping much of the day and there aren't too many alternatives when he can't sit up. It has been good seeing him more like himself this past week. I can't even explain how thrilled I was that he was smiling and happy at times, just like the old Dear Son. In December, the docs had told me that his crying was "disease progression" and he'd probably cry the rest of his life. I was beside myself to think that Dear Son would cry forever and that I'd never see my happy-go-lucky son again. I am so relieved that the bulk of his pain is gone. All of the sweating is gone and other than the pain from sitting up and the moaning at night, he's not crying any more like he used to. In retrospect, it is so hard to think back to these last ninety days and everything he has been through. It has really been a tough time for both of us.

On a different note, I normally read a lot of different blogs however this week, I stumbled upon an old favorite of mine, "The Examining Room of Dr. Charles. When I started blogging in 2006, Dr. Charles was one of my favorite blogs. I'd read the "Grand Rounds" every Tuesday and soon was reading his blog all the time. Back then, most of the blogs were physician blogs and there were very few patient blogs, unlike today. He used to write these stories that were fascinating. In 2005, he self published a book, "Legends of the Examining Room". Over time, he switched to this science blog and wrote more about science related issues than these patient stories however recently I saw that he's moved again and has a new blog. Here is a clip from his latest post, "Attending to a Patient's Funeral":

"You walk into the funeral space. Many people are gathered. You sense pockets of light humor and recalled happiness amid dark clouds of sadness and gloom. Although you know this is not about you, your ego can’t help assessing how others perceive you. Most of those present barely notice, but others recognize you. Is it surprise registering in a few faces – that you’ve come to observe your patient’s defeat, that you’re emotionally invested in the person who once called you their doctor, or that you’re willing to dirty your powerful white coat with the stains of ultimate impotence? Or is it gratitude, that even in this darkest of reflective hours you’ve come to pay your respect to another who trusted you, confided in you, and who reached out to you for whatever healing you might bring?"

You can read the rest of the post here. Dr. Charles blog, "The Examining Room of Dr. Charles" can be found here.

A Patient’s Perspective: The Real Cost of Lack of Organization in Hospitals

I remember the hospitalization well. Dear Son had just been put on the ventilator and we were only on day 3 of the hospitalization. After a while, you get to know the routine. Not only is it hard when your child is in the ICU, but after you have done it a few times, you know what to look for in terms of whether or not your child is really improving or not. I have little sayings that I’ve coined over the years to describe the way things are going, such as:

• “More people, bigger problem.” Back in 2006 when Local Hospital missed the MRSA pneumonia and I arranged for Dear Son’s transfer to Big Academic Medical Center (BAMC), he came to them in septic shock and acute respiratory distress syndrome. I had called BAMC on a Friday night to try to get someone to help me since Dear Son was ailing so bad. When he was admitted, they worked on him for fourteen hours straight in the ICU-the entire room was filled with doctors and people the entire time trying to get him stabilized.
• “When the vent settings are increasing, things are bad, settings going down, things are heading in the right direction.”


• “When you start to die, things go haywire.” This means that when you see they can’t control your blood pressure or your blood levels (potassium, etc.) and your skin starts turning gray, things aren’t going well. Of course your extremities are cold too since the blood flow is centered on your main organs.
• “More frequent anything means you are in deep doo.” For example, if they are doing blood gasses more frequently, you aren’t stable. Chest pt and nebulizer treatments, same thing. Basically, anything that’s done every two hours or so, means you are in trouble.
• “If the IV pole with the IV meds the patient is on, resembles a condo tower, meaning there aren’t any more places on it to place the pump, you are really messed up.”
  

It’s easy to get depressed when all of this is going on. Often times, I worry that Dear Son won’t make it or I wonder how many more times I can put him through this. Of course, when they make it, you are glad they made it but when you are going through it and watching them suffer, it’s not very easy and you question what you should do.

This past November, the hospitalization was especially grueling. Dear Son was a week away from his Make a Wish trip and we couldn’t go. He got the swine flu only after we couldn’t get the vaccine from BAMC, even though we set up the appointment weeks earlier. He was fighting for his life again, just six months after we were in the ICU in May from a hospital error (he nearly died when they used heavy sedation vs. general anesthesia to replace his VNS-the sedation suppressed his respiratory system, he got a mucous plug and his lung collapsed). Due to infection control procedures with the swine flu, I wasn’t able to leave the room. I soon developed the swine flu as well. That, coupled with trying to go home, bring all of my food down (they didn’t offer a parent meal), go grocery shopping while your kid's in the ICU and you are sick, plus lack of a hot meal in the hospital (with infection control you weren’t allowed to use the microwave or go anywhere in the hospital unless you agreed to wear gloves, mask and hospital gown 24/7 in the room with my son) made for a very long stay. But one of the most depressing parts of the hospital stay was the state of the hospital room. It was a mess.

I don’t think people realize how depressing it can be when everyone who enters the room brings in their supplies and just leaves them all over the room. Because I couldn’t leave the room, I watched each employee as they came in the room. Everyone would come in the room, dump the supplies on the counter in the room, do their task, throw 75% of it away, leaving the rest on the bed or the floor, and then leave the room. Due to infection control, they had to use a disposable supply to listen to Dear Son’s lungs. Each nurse put it in a different spot so each nurse spent time every day looking for it prior to doing his vitals. Even the same nurse couldn’t locate it when after she just did vitals the time prior. When they had to do an IV, they might look and see if they had the supplies, otherwise, they’d bring in a ton of supplies, use what they need, toss them on the counter in no particular order and leave. The amount of time wasted looking for supplies and money wasted on supplies was staggering. But it’s not just the nurses who don’t put things away, it’s the respiratory people too. I watched each one and over the course of a few days, even when Dear Son had nebulizer treatments every two hours, not “one” employee bothered to toss away the little plastic container that the albuterol came in, in the trash. Not one! All of them left it on the bed, on the tray table or in the room. If you don’t think this is a big deal, then think about this for a minute. If you aren’t in healthcare and are let’s say, in the business world, can you imagine for a minute going into a client’s place of business and leaving your trash on their desk, say a water bottle? What would the client think if you left an empty water bottle on the CEO’s desk before you left, or a Kleenex? Do you think he would want to do business with you or your firm? Do you think he would think you were “unprofessional” if you did that? Would you leave your trash on a conference table? Probably not. Only in healthcare will you find employees who think nothing of leaving trash with the client (patient). Probably because most healthcare workers don’t think of patients as clients.

The biggest drain on me was the state of the room. I knew with his vent settings increasing, we weren’t going home any time soon. I remember telling my mother that I would “never get out of here”. It was so depressing. I wondered if my Dear Son would live. And I couldn’t help but be depressed by the state of the room. I wonder if the staff ever stops to think about how their actions affect the patient’s mood or even how their messiness affects everything. Lack of putting things away in a patient’s room or a lack of order sends these messages:

• A messy room generally indicates that you don’t care about something. If you like your job because of the patients, do your actions of not putting things away, reflect that?
  
• How do you feel when you are in a messy room-whether it’s at home, a friend’s house or anywhere? Does it make you feel good and bring you up or does it bring you down?
  
• Due to Infection Control procedures, whatever comes into a patient’s room can not be brought back to the supply room, so the patient is charged for these items. Do you think it’s fair to overinflate a patient’s bill due to your lack of organization? Would you like your hospital bill like this?
  
• Many people disdain waste today and are into recycling and being green. Do you think your actions are “green” when you bring in excess supplies only for them to be tossed? Do you thing that’s being “green”?
  
• What impression do you give your patient’s when you leave trash in the room or when you can’t locate simple items in the room because you misplace them. Do you think that gives the patient or caregiver the impression that this is a “magnet hospital” or that you are a “top 100” hospital?


This is a hospital tablescape I created with the plastic plates I brought from home, the flowers Dear Son received for his birthday. I created this because I was happy that Dear Son was extubated the night before I hoped he was getting better. To see more of my tablescapes, click here.

• If you were critically ill and recovering, let’s say in your own bedroom to help give you a picture, would you feel better if the room was a disaster (mess) or would you feel better if it were clean? Would you feel better if someone brought you a fresh glass of water or would you think it’s o.k. if every time you needed something that people brought it to you but left the old glasses, old water, trash, etc. in your room?

On or around ten days of the hospitalization, I had enough. While I certainly pick up after myself, I decided to get the place organized. Remember, I was deathly sick myself with the swine flu and an ear infection, but I needed to do something since I was so depressed. I called the nurse and asked for six empty bathing bins (these are the pink bins that hospital have with bath supplies in them) and attached labels to them. I put changing supplies in one, feeding supplies in another one, monitoring supplies (anything from electrodes for pulse oxygen to heart rate leads, thermometers and so forth) in another, etc. until it was all done. I organized their needles, syringes and flushes the best I could since I didn’t have anyone to ask about all of the tasks they used these for. I made everything as nice as I could. I decided that I may not be able to change their habits, but I would ask them to throw their trash out when they were done with a task, assuming they didn’t.

A funny thing happened when I organized the room. The nurses stopped when they came in the room. They attempted to put things in the right order. They saved time when they did their tasks because they could find things. They commented on how nice it was. When the respiratory people came in, if they tried to leave without throwing out their trash, I simply asked them nicely to throw it out and mentioned matter of factly that I have to live here all day and I’d like to keep the room clean. If they didn’t then I would pick it up and throw it out myself.

Granted, I am a professional organizer so I notice these things but I don’t think that I am being overly picky when I want a patient’s room to be clean and neat. (I should also tell you that I’ve worked in the corporate side of healthcare for many years and oversaw operations as well so I tend to look at how people do things in order to save time or money.) I don’t think any of us want to spend time in a hospital that isn’t clean or is very messy. Given a choice, you always think the hospitals that aren’t clean or are very messy don’t give good care.

After we got out of the ICU, we went down to the main pediatric floor. I did the same thing and used the pink bins. I’ve done this for some time now but I guess it’s never been as bad as it was in the ICU this time. I remember people now by how they leave the room. There is one little old lady that draws Dear Son’s blood. She leaves a mess every time tossing only 75% of her trash and leaves bloodied cotton balls and band aid trash on the bed, every time. I know which cleaning people will always clean the floors and which ones skip over that task. I know which nurses put their tools away when they are done and which ones aren’t organized.

And finally, I should mention this before someone brings it up. I do realize that nurses are very task oriented and that they are very busy and don’t have time to “organize” a room. I am not expecting that. What I do expect is that a healthcare worker do what the rest of us do: put things away when we are done and take care when bringing supplies into a room.

In the end, I came to a few conclusions:

• The best nurses were the best managers of their time and had good organizational skills.
  
• The worst nurses were poor time managers and had the poorest organizational skills. While I am careful when I say this, it was easy to see the examples. For example, the ICU night nurse, who had only Dear Son to manage, waited until 6 a.m. when we were changing him and wanted to give him a bath. Both radiology (chest x-ray) and respiratory were outside the room waiting to do their tasks when she wanted to start a bath. And yes, she sat at the pc outside the room all night looking bored.


• 90% of the nurses never made a list of supplies that were needed for the room prior to fetching them. A list would have saved them time from running back to the supply room again and give them "more time" in their day. This was especially problematic when they would attempt a procedure with another nurse, find out they don't have the supplies, start the procedure and send the nurse running back to get more only to find when she returned that the other nurse forgot to mention one of the supplies they need. From an operations standpoint, I might suggest hospitals create a standard supply list for each procedure, then when nurses are rushed, they get what they need without having to think about it.
  
• When given a list of supplies that I needed, only about 70% brought back the items on the list. Some of them forgot they had a list or forgot to read it. I know this because they told me even though I didn’t ask. Keep in mind that in the ICU at this hospital, the nurses only have one or two patients max so often Dear Son is their “only” patient, unlike the pediatric floors.

So the next time you spend time in a hospital or if you are a healthcare worker, ask these questions:

• Am I picking up my trash and putting things away when I am done?
  
• Am I padding the patient’s bill by bringing in excess supplies?
  
• Am I being “green” when I overstock a patient’s room with excess supplies because I didn’t think about what is needed?
  
• Am I upholding the hospital’s image of a “top 100” hospital or “magnet status” when I do these things?
  
• Would I feel good in this hospital if my room were left in this condition?

Keep in mind, we are all busy at our jobs today and that is no excuse to leave our trash and not be organized. There are a lot of people that would be happy to have a job.

Photo of Dear Son's hospital bed (with his Tendercare headboard) at home.

And the next time you are in the hospital, take a look around. What can you do to help keep things neat and organized and make it easier for everyone? After all, doesn't everyone feel good sleeping on clean sheets in a nice clean room?

Note: Dear Son is eighteen years old and suffers from a progressive neurological disease. In addition, he has intractable seizures, dystonia and is severely retarded due to a random mutation of the ARX gene. He was hospitalized in November 2009 for 26 days, 24 of which were in the ICU at a Big Academic Medical Center, for the swine flu and a viral pneumonia.

Dear Son Medical Update~Better

Things have improved with the Scopolamine patch back on. While I can still hear the secretions, it is slightly better. Also, I made two changes that seem to help. He had been moaning in his sleep each night and while I tried to turn him over to make him more comfortable, it didn't seem to help. I am assuming the moaning was from pain since he never did it prior to this pain issue. Usually he would start moaning around 9 p.m. or so and when he did that, I gave him .5ml of Risperdal and it seemed to help and then another .5 ml around midnight, when I gave his other seizure medications. (Ped Neuro Doc had given me the o.k. to use this.) That small change means he's more comfortable and not moaning as much; it also means he's sleeping a lot better. Now, he only wakes me up to be rolled over or changed. I also increased his feeding slightly. Prior to the swine flu, he was on 4.5 cans of formula a day. After that, we decreased the formula to 4 cans so he wouldn't aspirate. It stayed like that but then Dear Son kept waking up earlier and earlier for me to get his food started. When he was consistently waking up from 3:30 - 5 a.m. I decided to increase it to 5 cans a day (which is 1250 calories vs. 1000 calories which is 4 cans). Now he sleeps later and is waking up around 6 a.m. I always know when he wakes up and is hungry because I'll try turning him over and seeing if he's wet when he's fussing then start his food if those don't work. Once I do that, he always quiets down and goes back to sleep so I know he was hungry.

Anyway, I am on day 3 or so of the new plan and he's sleeping better and so am I. It is always amazing how much better I feel and how much more I can get done when I have had almost a full night's sleep. Dear Son is waking up and seems happier. The smiles are few and far between yet, but he definitely seems better with the new regime.

I am anxious to see what the CT scan will show. Dear Son still is not able to sit up in the recliner but I do try to sit him up every day. Typically, he'll sit in there for a bit until he feels pain and starts to cry. Then I move him back to his bed. I have to try to sit him up every day though to help keep his lungs clear. Once they figure out what's causing his pain from sitting, we'll probably be able to dump the Risperdal.

Dear Son Medical Update~Back to the Patch...for now.

Over the past few days, Dear Son continued to have difficulty managing his secretions. He has a lot of trouble sleeping at night with the secretions and was moaning out a lot of the time. Although I have the head of his bed raised and I frequently roll him over to change positions, he still has great difficulty breathing and I can hear the rattling of the secretions in his throat. Some of his moaning can be quite loud while he is trying to clear his airways. While you and I might cough to do this, Dear Son really doesn't cough at night and has trouble coughing during the day. He also moans out in his sleep regardless. This is new and I am not sure if it's pain related or what but it's hard to listen to when nothing I do seems to help.

I spoke with the doctor today and talked to him about the gel. I told him that I didn't feel it was working at all and I was quite concerned he might aspirate on his own secretions. As a result, he put him back on the Scopolamine patch for now but we'll follow up with another CT scan of the abdomen next Tuesday to see what is going on with his bowels. There really aren't any other pharmaceutical options to dry up these secretions since it is my understanding that Scopolamine is really the drug of last resort. I must admit I was somewhat relieved by that since I was so worried he'd choke to death.

A few years back, we had tried botox to assist with his secretions but the benefit was short lived, say two weeks or so before he was back to choking again. At that time, we had discussed the removal of the two on the salivary glands, the parotid and the submandibular gland but on one side of the throat only. I asked Ped Neuro Doc (he functions as Dear Son's primary now since he's medically complex) if that might be a viable option now. While I understand the importance of protecting the airway, I also worry about using the patch and having Dear Son screaming in pain again from urinary retention. The doctor will be talking to the ENT with regards to possible next steps. Although surgery (sedation) is certainly a huge risk for Dear Son, I know that we have to get Dear Son to a point where he can sit comfortably, urinate without hurting and breathe without choking on his secretions. It will be good to hear what they recommend.

In the meantime, I am still trying to sit him up in the recliner briefly every day, to help keep his lungs clear. While we are not where we need to be, he is still better than he was a month ago and that is important.

We also had a visit with the school nurse last week. She had called and asked to visit earlier this month when Dear Son was in the hospital. She came to our home to see how Dear Son was doing. I must admit, Dear Son and I were definitely ready for a few visitors! She also wanted to know if we might have an interest in some more visitors from school. We are definitely interested however we have to determine if that might be a viable option with his docs. Certainly, we have to make sure everyone is well first! We also discussed him going back to school at some point. He hasn't been to school since October and the Pulmonary Doc does not want him back in school until late February or early March, after the cold/flu season has passed. Since Dear Son can not clear his airways, he can not risk getting sick again. Also, Dear Son isn't ready to go to school until we can have him sit up without pain and essentially be able to get through his day.

The good news is that they offered to try some therapies at home. We'll see Ped Neuro Doc at the end of February and see if we can get some approval for therapy and for his teacher to do home visits, say once a week or so. If he tolerates that, then we can figure out the next steps in terms of riding the bus and going to school. They have offered to do whatever schedule he needs, anything from school for two or three hours one day or week or whatever he needs to get back in the swing of things. Even if he can't sit up, they can do some therapy while he is in his bed. They have to check the IEP to see how they can meet his educational goals to do this.

I think having some home visits by the therapists might be helpful. I can have the therapists do some leg exercises and leg massage to help increase the blood flow in his legs/calf. I can have some speech therapy to help me with keeping his teeth cleaned. After Dear Son had all of that suctioning, he's reluctant to let me brush his teeth now, something he used to love. They have exercises they can do to help Dear Son relax his muscles and open his mouth for me. In terms of therapy in bed, I am hoping they could help me help him turn over. Dear Son can't roll over so I have to turn him over at night. I grab his hips to turn him however he used to be able to take his arm and move it over as I moved his hips but now he can't do that and I have to lift his hips and then once they are positioned, then lift his arms and turn the top part of his body over. It's not very easy. Plus, it's also a bit self serving. I would be thrilled to get a little help here with some of his tasks. While many people have offered, I have always turned down any help but now I am getting a bit weary of 24/7 care and I am ready to put anyone that offers to work, lol!

We are quite fortunate to have such a wonderful school system that is willing to do whatever to help Dear Son. On a sweet note, his teacher wrote me and was asking when she could schedule a visit. She mentioned that she was assigning new jobs for the students for the new semester when one of the girls asked what Dear Son's job was going to be for the new semester. They have jobs like shredding, plant watering, folding towels, etc. She said Dear Son's job was to "get healthy"! I think that sounds like a great plan.

As for me, I am ready for all of this to be over. I still have a stack of medical bills to go through. Hopefully, I'll get that done next week. This week, I set up a new home healthcare provider and worked on another medical issue. I am anxious for Dear Son to be well again and to see that happy face again. I am also ready to get back to my tablescaping and some other things. I haven't had any time to do anything for me or to get out of the house much so I am definitely ready for that. Thank you for all of your wonderful comments and suggestions for Dear Son.

Dear Son Medical Update~Scopolamine Gel

Dear Son has been using the Scopolamine gel since we received it on Friday afternoon. I had paged the neurologist on Friday afternoon due to Dear Son's crying. He suggested a small dose of Risperdal Friday afternoon and at midnight. Between the gel and the Risperdal, Dear Son slept great. Friday night could not have been better. I went to bed at 12:30 p.m. and he didn't wake up until 4:30 a.m. Sometimes he gets hungry and likes his food started early so I started it around 5 a.m. I was up on and off after that with him for food, meds and to turn him over but generally he woke up happy, with a smile on his face and things seemed great. As a matter of fact, it was one of the his best days yet. He seemed like his old self.

On Saturday morning, I sat him up in the recliner again and he cried. For some reason, he can't seem to sit up more than ten to fifteen minutes before he starts crying out in severe pain. This is concerning to me since it's been going on for quite some time and we don't know why. I try placing pillows behind him to position him differently but nothing seems to work. He cries so much that he has a seizure. I end up using his VNS a few times and putting him back to bed. He is happy to lie down again.

After he left the hospital, I felt confident that the urinary retention was the problem for his pain and still do. At the hospital however, he never got out of the bed. They don't have a hoyer lift there and it's impossible to sit him up in the chair so we had no way to know that sitting was still a problem. I am concerned at to what would still be causing the pain-is it the bladder or is it pain from the pneumatosis? They say there should not be pain from that but I wonder. When I take him out of the recliner and put him back in his bed, he's happy.

While the gel seems to allow Dear Son to be pain free, since it's not causing urinary retention, I don't believe the gel is working at all. Dear Son's secretions have increased and he is choking on them which means that the Scopolamine gel is not drying up secretions like the patch did. The pharmacist said I could use up to .4 ml/day which I did on Saturday but it doesn't seem to have much effect. I am worried he will choke to death. In the meantime, I am trying to give it a few days to see if it will work. I have also started to track how much I am giving him. I was using it whenever he choked on Saturday but tried to decrease the amount since then using it only at night. My fear is that he will choke on his secretions when I am not in the room or he will choke at night when I fall asleep. He choked on his secretions last night when I went to bed and had a few episodes of apnea after some of the choking. It wasn't a great feeling. I worry he'll choke or aspirate on his saliva. I was also up a fair amount, every 90 minutes or so, could be more, I can't be sure, so it wasn't as good as it was Friday night, although I had not given him anymore Risperdal.

The actual medication is more like a foam than a gel. It's almost as if it the medication were "whipped". It seems to be mostly air to me. When I attempt to administer .1ml and put it on my gloved finger, .2 ml comes out. It's extremely difficult to get the exact amount out of the syringe. Also, when I try to pull back on the syringe, to pull .1 ml back into the syringe, it seems like it might have worked and yet when I go to adminster the next dose, sometimes nothing comes out at all so I wonder if anything was retracted at all. I am rubbing it on both wrists and sometimes on one wrist so I probably need to make another call to the pharmacist to make certain I am administering it correctly. I wonder how much remains on the rubber glove.

So at this point, I need to give it a few days to see how it goes. As with most medications, you really need to give it a week or two. Also, because he can't swallow or clear his airways, I'll have to be pretty careful. I get an awful feeling however, that something isn't quite right with this sitting. I would have expected that to improve somewhat but things haven't changed much where that is concerned.

In terms of the big picture, I am beginning to think that we are entering a "no-win" situation. We have to keep his airways clear. If the gel doesn't work, then perhaps the only option is surgical removal of two of the saliva glands. If Dear Son's two greatest risks are sedation and aspiration, then surgery would present a risk with the sedation. I don't know what other options there are, but I'll have to leave that to the physicians.

Dear Son Medical Update~Things are a Mess

This is a picture the day he got released from the hospital, earlier this month. It's not the greatest picture, with his long hair and all, but we were happy to be going home after two weeks.

Things have been difficult this week, to say the least. Dear Son is yelling/crying out a lot. I have removed his patch, put half the patch back on and then put the full patch back on and yet nothing seems to help. All of this has been to try to stop the crying.

Last night, Dear Son was up a minimum of once an hour from 2:30 a.m. on. I am exhausted. This went on for hours. Finally, I got up and tried to sit him in the recliner for a while but he began crying out so much that I had to put him back in his bed. The fact that he can't sit up at all is concerning to me. I ended up paging the doctor to see if there was anything I could give him to stop the crying. He told me to give him some Risperdal.

The good news is that the courier delivered the Scopolamine gel today. The gel replaces the patch and allows us to adjust the dose so essentially, he gets a dose that will last 4-6 hours to help dry up secretions at night and then conceptually, he won't need it during the day. As you may recall, he began to have the side effect of urinary retention with the entire patch; his bladder was huge and he was in pain trying to urinate. Hopefully, this resolves his issues.

I thought it might be interesting to talk about the types of questions that I ask when he gets a new drug. Many parents ask me what types of questions should they ask so I thought I'd share some of the questions that I ask and talk a little bit about why I ask them.

In this case, we have a drug from a compound pharmacy in a form we've never used. Since the drug was delivered by courier, I didn't have a chance to speak with the pharmacist directly but he did tell me to call him when I recieved the medicine. In this case, I was not able to check out the pharmacy, but in cases where they are making the drug, I would have liked to have seen the pharmacy, specifically, to see how clean they were. In this case, while I didn't get to see the place, Dear Son's physician specifically recommended the pharmacy so I had some assurance that they would be o.k. In addition, their automated voice recording states that they are a preferred provider of the largest insurance firm in our state.

This is how the gel arrived. This is a three month supply.

Prior to calling the pharmacist, I am going to get my questions ready. After seeing the packaging, I could tell that the prescription should be stored in a dark area and it looked like it might need to be refrigerated. I would have assumed it would have come in a refrigerated type package, but it doesn't hurt to ask. I'll confirm both of these issues. Next, the Scopolamine patch that Dear Son was using was a 1.5 mg patch meaning it delivered 1.5 mg of Scopolamine over three days or .5 mg per day. So if the goal is to use the drug at night, I assume that the dose would be .25 mg or half of the daily dose of the patch. Although the directions that came with the gel state to use .1 ml (.25mg) to .4 ml as directed every 4-6 hours, I will have him explain this to me. Next, I need information on how it should be applied. Over the phone, he mentioned to Dad that it should be applied on the wrists and rubbed in. Next, I wanted to know if the gel had a half life and finally, I want to know if there are any contraindications of the gel meaning what are the signs that I should stop using the medication asap. You should always know that for each medication as well as know the major side effect of the drug.

So to summarize, prior to my call, these are my questions:

• Does the gel need to be refrigerated?
• Does it need to be away from light?
• The Scopolamine patch was 1.5 mg patch for 3 days or .5 mg/day or .25 mg for 1/2 day or 12 hours; with the Scopolamine gel, is my goal to use the same amount as before for x number of hours?
• How do I apply it?
• Does the gel have a half life?
• Are there any side effects or contraindications of using the gel?

In this case, I am looking to speak with the pharmacist himself and not a pharmacy tech, to get the answers. I call the pharmacist and we discuss the following:

• The gel can be kept at room temperature and does not need to be refrigerated. Refrigeration could break it down. (This is good information and that's why you want to ask these questions. Also, if it were summer time and it was warmer inside, you need to know if it should be refrigerated.)
• It needs to be stored in a dark place at room temperature.
• Regarding dosing or how much to use, he explains that the Scopolamine patch works differently. It delivers .33 mg/day but the penetration rate is higher than the gel and it also has a slower release into the bloodstream. The advantage of the Scopolamine gel is that it is an immediate release into the bloodstream.
• Dosing-He goes on to say that it will be trial and error with the gel to get the dosing right. Each person absorbs the gel differently and there isn't any way to tell how fast or slow that a person will metabolize the gel. (We know from past experience that Dear Son is a hyperutilizer of medications.) The pharmacist has us start with .1ml (.25mg) at bedtime and see how he does. It should last 4-6 hours. The recommended dose is 2-4 times per day (24 hour period) however that is if we wanted the same coverage as the patch; in our case, we are looking for partial coverage or coverage at night and then no coverage during the day. He explains that the advantage of the gel is the ability to adjust the dose and it's a different release mechanism; the gel can be more cumbersome to administer in higher doses however if we get to the point where he is using a higher dose or the same amount that the patch delivered, then we need to go back and talk to the physician.
• In terms of application, he states we can apply it to the wrists, the tops of the feet or at the base of the neck, anywhere where there are blood vessels where it can be absorbed. (In Dear Son's case, we know that he has edema in his feet so his feet would not be the ideal place to apply this gel.)
• Does the gel have a half life? Yes, the gel's half life is the same as the patch, 3-6 hours.
• Are there any side effects or any situation where I should stop using the gel? The gel is hyperallergenic; the only contraindications would be urination (or lack thereof) and if his breathing gets worse.

After our call, I decided to try out the gel on Dear Son. First, there is the practical application of this gel. The goal is to use it at night so I am planning on giving it to him at midnight with his other medications so it will last hopefully until 6 a.m. Now then, here is the syringe and I am supposed to give him .1ml, or a tenth of this syringe. I can barely read the syringe in broad daylight and with reading glasses on, lol, let alone do this at night in the dark. Next, I'll put it on his wrists and rub them together. Sounds easy until you see Dear Son. His arms are tense and it's not the easiest thing to do.

This is the picture of the syringe. It is a white gel with white letters. I will be giving him one tenth of this syringe for a single application. I think black letters might have been easier to read considering the gel is white.

Around ten p.m. tonight, I changed his diaper and he was choking on his saliva. I decided to give him a second dose of the gel since the goal is to keep his airways clear. This time, I use rubber gloves and put the exact dose on the glove under the kitchen lamp, so I can see. This way, I won't need reading glasses. When I do that, .2 ml squirt out. Yikes! I use the syringe to put .1 ml back in so hopefully, that occurred. With the rubber glove on, I rub it into his wrist and then try to rub his wrists together. I may end up rubbing this in on both wrists myself instead of trying to rub his wrists together when he's sleeping. (The rubber glove is extremely important! You do not want to get Scopolamine in your eyes or on you since it can have the same effect. If you get it in your eye, it will cause your pupils to dilate and blurred vision. I know this because it happened to me once. I must have got it on my fingernail when I removed his patch. Although I am a diligent hand washer, stuff happens. My pupil was dilated and it took three days for my vision to return in that eye. )

So hopefully, tonight will go well and he will sleep. The last three months have been really challenging for him and for me. I think it's probably been the most difficult for me namely due to all of the crying and lack of sleep. I sincerely hope that this gets resolved. My nerves are about shot trying to make him more comfortable.

The great news is that it will resolve the urinary retention issue with the patch. Regarding new prescriptions, you certainly don't have to ask all of these questions but I like to understand how drugs work. As an advocate for Dear Son, it's helpful to learn these things. Now certainly, I've grown into this role over time. I can't imagine that when Dear Son was a baby and he got medications that I would be asking how they worked since I am sure I'd be overwhelmed with everything and the process. But now that we are in the end stages of his disease progression, and now that he is really medically complex, it helps to understand how things work since there are so many issues going on.

Dear Son Medical Update~Solution?

After my last post, Dear Son continued choking on his secretions. I tried 2/3s of the Scopolamine patch and then had to put the whole patch back on so he wouldn't choke or aspirate. Once I put the whole patch back on, Dear Son hasn't cried out from choking. The only time he cries a lot is when he sits up in the recliner or wheelchair. We are not sure why. Lying down, he simply sleeps and cries out when he needs to be turned over. He is sleeping however most of the day and night but does need to be turned over quite a bit so I am still not getting a heck of a lot of sleep.

I spoke with Ped Neuro Doc on Monday and we are going to switch from the patch to a Scopolamine gel that will be made by a compound pharmacy. It takes a few days to make so it should be ready by tomorrow or Thursday. The gel can be rubbed on Dear Son before bed and will last from 8-10 hours; if he needs another dose, I can do that again. This will give him the benefit of the Scopolamine drug in drying up his secretions but also prevent urinary retention since it's only on part of the day.

If that works, then the only issue remaining is to figure out why he cries when he sits up in a chair. At the hospital, he was lying in bed the entire time because they don't have a hoyer lift or any way to lift him out of bed into his wheelchair. I am not supposed to do that anymore since I had back surgery so I don't risk it.

Once we get the gel, we'll see how things go. I imagine at this point, Dear Son just needs to sleep and get well after these last few weeks. Dad has him today and tomorrow, so I can work. It will feel great to get a good night's sleep.

Dear Son Medical Update~ Mixed Bag

Things have been a bit of a mixed bag since we've been home. As you may recall, Dear Son was hospitalized for pain/crying two weeks ago and was diagnosed with Pneumatosis Intestinalis and urinary retention due to the Scopolamine patch (He wears that to dry up secretions.). Thursday night, he cried out on and off all night, much more than he did the last few days at the hospital. He slept all day on Friday and then Friday night, things seemed better. He slept relatively well and it was as good as it was at the hospital-very little crying out except when he needed to be rolled over.

Friday morning, he looked great. I got him up and sat him in the recliner and he started crying. He cried out as if he was in pain for quite some time. It seemed like leaning back even slightly, causes him some pain. Finally, I moved him to his wheelchair since the back is straighter and he is upright. That still didn't work. He cried out in pain for some 2.5 hours. I wasn't sure if I should give him some Tylenol for pain for try some Risperdal. I paged the doc but didn't hear back. Finally, I gave him some Risperdal and put him in his bed where he settled down and slept for a few hours.

Last night, he cried out most of the night. The issue seemed to be secretions. The half patch isn't working very well in terms of drying up secretions so he's choking on his saliva. In desperation, at 3 a.m. I gave him some Risperdal. Some time later, I removed the Duoderm and put the whole Scopolamine patch back on. I am sure much of the med that was on that side of the patch had been removed, but it was still more than the half. In general, I know I need to protect his airway so that he doesn't aspirate however I worry that if I go back to the whole patch, he'll be screaming again in pain from the urinary retention.

In terms of urinations, it's a mixed bag. They have decreased over time:

1/09/10: 9 urinations (Decreased patch to 1/2.)
1/10/10: 7 urinations
1/11/10: 8 urinations
1/12/10: 5 urinations
1/13/10: 3 urinations (Stopped IV fluids and TPN and started our formula/water regime.)
1/14/10: 3 urinations
1/15/10: 1 urination
1/16/10: 3 urinations

After being up on and off most of the night, he's sleeping now. Typically, he has the most issues between midnight and six a.m. They tell me that most kids have the most trouble at night.

I suspect that he may never be totally well again. While things seem bad at times, for the most part, it's a heck of a lot better than the blood curdling screams he had prior to being hospitalized. The only time that occurred was yesterday for 2. 5 hours when he was in the recliner and wheelchair. I thought perhaps it might be the pneumatosis however the GI surgeon assured me that it doesn't cause pain. I'll have to touch base with his doctor tomorrow.

Dear Son Medical Update~Home

Photo of Dear Son's Tendercare Hospital Bed

We just got home from the hospital yesterday. Since I last wrote, we made a lot of progress.

For the pneumatosis, Dear Son completed the antibiotics they prescribed. They had him on a seven day course which was done as a precaution. One of the causes of the pneumatosis intestinalis can be infection and although he didn't show any signs of that, they prescribed a seven day course, just in case.

In addition, they took him off of the Miralax and changed his Phenobarbital from a liquid form to a pill form. One other cause of pneumatosis can be medications. In this case, they know that too much Sorbitol can sometimes cause this condition and while they don't know what caused it, they are doing everything they can. They reviewed all of his medications and determined that Miralax, Valproic Acid, Phenobarbital and Lamictal had Sorbitol in them. They removed the Miralax, left him on the Valproic Acid since there isn't a pill form, left him on the Lamictal since it already was in a pill form and changed the Phenobarbital to a pill form. My main concern was the Miralax. They decided not to replace the Miralax with anything and I worry he might get backed up since I know that he needs some laxative along with his formula. They told me that when they analyzed his medications, there were 14 grams total of Sorbitol in them and 10 of those grams were in the Phenobarbital. So the good news is that most of the Sorbitol was removed by simply replacing the liquid Phenobarbital with the pills.

In addition to these two things, they had taken Dear Son off his formula tube feedings and replaced that with IV fluids and nutrition via his central line. This gave his bowels rest for a week. They do not believe that the pneumatosis causes him pain however nor causes him to cry. Moving forward, they did not do another CT scan of the abdomen and the only other recommendation from GI Surgery was for Dear Son to have a colonoscopy in a few weeks after this pneumatosis subsides.

In analyzing his CT scan, they noticed that his bladder was huge. They determined that one possibility was the Scopolamine patch causing urinary retention. They decided to use half the dose; since it is not recommended that the patch be cut in half, pharmacy recommended that half the patch be placed over some Duoderm (it's a clear plastic piece of medical type tape), which is what we did. Since he got only half the dose, his frequency of urination increased. Initially, he seemed to have severe pain ten to twenty minutes prior to urination, where you could actually see him crying out and trying to bear down to pee. When this happened, they consulted with Urology. They did a renal ultrasound to look at his bladder and kidneys. In a small percentage of cases, kids who are on Topamax can develop kidney stones. The renal ultrasound was normal and no kidney stones were found. The painful urination subsided after two days or so once he started urinating a lot. He went from two urinations a day to eight or nine with the half patch (although is total liquids increased from 1500 ccs to 2350 ccs). On Tuesday/Wednesday, he returned back to his normal volume of 1500 ccs and his urinations decreased to five and then three. His crying decreased drastically as soon as the half patch took effect.

On the down side, as soon as the patch size was decreased, his secretions increased so I have to watch him carefully to make sure he can clear his airways. As a result, we are going very slowly on his feeds and feeding him 24/7 at a rate of 60 ccs an hour.

Regarding the central line, it started to get red and hard and show signs of infection after just three days. They removed it and tested it for bacteria and it came back negative.

As for seizures, Dear Son had become very agitated and was shaking a lot. It had gotten worse since December which was when another Attending Neuro Doc had made some medicine changes. Dear Son was shaking so much at times that he looked like he had Parkinson's. I spoke with Ped Neuro Doc about increasing the Klonopin dose and he increased it nearly back to previous levels and Dear Son improved.

During our stay, they also had turned off his VNS for a day, to see if that might be a source of his pain however it wasn't. That was prior to the CT scan of his abdomen. When they turned it back on, they lowered the settings a bit. The only down side is that Dear Son is having a few more seizures. He had one this morning before meds and seems to have one every few days prior to his morning meds. At this point and time, Ped Neuro Doc wants to leave our meds and VNS as is. I am able to control these seizures with the VNS however.

Dear Son improved quite a bit with the switch to the half patch. It appears the crying was due to the urinary retention. While he still cries when he needs to be changed, rolled over or for a seizure, there was little other crying other than a few episodes here or there. I felt very good that he was no longer crying and screaming. Interestingly enough, one of the night nurses came by on Tuesday morning to see how Dear Son was doing. She was glad the crying was resolved and said that she heard a kid crying and screaming at the top of his lungs last week and asked the other nurses who was screaming. They said it was Dear Son. She heard him all the way down the hall at the nurse's station. She has known Dear Son some ten years there and told them that it wasn't like Dear Son to cry like that since he NEVER cries.

So I felt pretty good when Dear Son had stopped crying at night. You could see the pain had lifted from his face. Prior to that, he always seemed in pain, even when sleeping. I felt really good and thankful that this issue had been resolved. I was on cloud nine. It was really something to think that only a week or so ago, they had told me he may never stop crying since they thought it was disease progression. I felt even better when one of the nurses stopped by Wednesday night to see how Dear Son was doing and he started laughing, smiling and flirting with her. Then I knew that Dear Son was back! It was such a pleasure to see that smiling face again!

At that point, I knew we needed to get home and see how Dear Son would do in his normal environment. Dad came down to pick us up for the discharge. When he put Dear Son in his wheelchair and leaned him forward, Dear Son screamed out in pain. I was a bit concerned but still optimistic. We left the hospital and he cried in Dad's car all the way home. Sometimes, he cries in his car and I am not sure why. I don't know if it's the angle of the seat or whatever but it happened prior to his issues. When we got home, he sat him in the recliner and it seemed like he was in pain. Dad kept saying how Dear Son looked to be in pain and I said that we needed to give Dear Son some time since he hasn't sat up in two weeks. Well, Dear Son started crying and Dad left. Like really crying again. I was demoralized. I could not believe it was happening. I was almost suicidal to think that after such great results with hardly any crying the last few nights at the hospital that this was happening again. I tried to remain calm and got his bed ready then moved him to his bed with the hoyer lift. As I removed his pants, I noticed that he had a dirty diaper, hence the source of the crying! Yay! The night went o.k. and then from 1 a.m. on he cried out on and off and I got up to see what was going on. I stopped his continuous feeds at 3 a.m. since I heard him gurgling on his secretions. He continued to cry out once an hour or so all night until this morning. He had a seizure this morning prior to meds.

Overall, I do think we resolved his issues with the crying. I think it will take a little time for Dear Son to recover from everything and I expect that he still might cry however it is nothing like it was. I am so happy that they were able to resolve his pain issues. I knew that he wasn't crying for nothing and I knew he was in pain. Moving forward, I suspect our next issues will be motility, or lack thereof since he's not on the Miralax and controlling his secretions.

In the end, I am really thankful that they got this resolved. Dear Son's physician, Ped Neuro Doc really did an outstanding job. He worked tirelessly and spent a ton of time on this issue. I can't thank him enough. He reviews all of the test results himself, checked out the CT scan and noticed the bladder issue, came by to see if the MRI was done prior to going home. He just gives his best all the time for his patients. He has been Dear Son's physician for 18 years now and I just can't imagine what would happen if we had someone else. We have received such an outstanding level of service over the last eighteen years that I honestly have no idea how he does this. He not only takes good care of Dear Son but all his patients like this. I am going to write him a thank you note later today or tomorrow, when I get a spare minute.

And finally, I apologize for the delay in updating you. While Dear Son was in the hospital last week, I received a notice from my apartment complex that there had been a recall on the sprinklers so they needed us to remove all of the furniture in our apartments located under the sprinklers so they could replace them. Well, I had just got home from the hospital and tried to move everything really quick. In doing so, I tried to push the solid wood base of my dining room table with my right foot and injured it. I either broke or strained the first metatarsal in my foot and can't walk. I was in severe pain trying to work on Wednesday and driving was horrible. I had an x-ray done on Wednesday and found out that I sprained my foot. In the meantime, I am in a lot of pain so I wasn't able to sit down to update you prior to now. I have been icing it and taking some pain relievers but it still hurts to try to stand, walk, sit or do much of anything.

Thank you for all of your comments, concern and prayers for Dear Son over these past few weeks. It is really appreciated.