PC Virus and Other Stuff

Shortly after I came home from work today I discovered that my Yahoo email had been hijacked and an email was sent out from me to people in my address book with a link to a Canadian Pharmacy site. If you have received an email from me, please delete it immediately; I have since learned that this is the Kneber Virus and I am working on removing it.

On a different note, Dear Son is having some issues again. Last Wednesday, I noticed that Dear Son was retaining fluid and his stools were getting harder. In addition, his urinations had decreased. I thought I had discovered the source of the issue and was giving him more Miralax to get him back to normal. By Friday evening however, Dear Son started to cry out in pain quite a bit. His stomach was not only bloated but hard. I could feel a mass in there when I pushed on it so I knew that was a problem. I decided to remove his Scopolamine patch and manage his secretions with an anti-histamine that the doctor had recommended a while back. It helps dry up secretions in his throat (his throat muscles are deteriorating and he can't swallow so he'll choke on his own saliva if he doesn't have anything to dry it up). I started to get a little nervous when I was feeding him via the gtube since all of this fluid was going in but nothing was coming out (urinations). Although I was fairly confident I was doing the right things, if I was wrong, his intestine could burst and he'd die of sepsis. (Dear Son had similar issues earlier in the year when he had urinary retention due to the Scopolamine patch. )

I decided to page the doctor to make sure my plan of action was correct. I wasn't sure if he needed to get an x-ray (to see if there is stool in there) or if I needed to decrease the rate of his feedings. The doctor recommended that I decrease the rate of the feeding and give him an enema.

Things improved on Saturday and things started to clear out a bit. He was urinating regularly and had a few small bowel movements. On Sunday things slowed down and by today, he hadn't had a urination in some 30 hours, and that was after he had an enema. I paged the doctor late this afternoon and he made some suggestions so hopefully Dear Son will be feeling better soon.

I probably won't post for the next day or so since I have my hands full so to speak but will try to resume posting later this week.

Note: Dear Son is eighteen years old and suffers from seizures, dystonia and severe developmental delay as a result of a random mutation of the ARX gene. He also has a progressive neurological disorder and is in the later stages of the disease.

Good News, Bad News, Please Pray

The good news is that Dear Son starts school tomorrow. He'll try it for 2.5 hours and he's excited. The bad news is that I got the stomach flu today. I called Dad to come help me from 9 to 4 today but I can't really do much. I had him get everything ready for tomorrow. Dear Son has not been to school since the Friday before Halloween, that's when he got the swine flu and had respiratory failure within 48 hours of contracting it.

Please pray he does not get sick. He can not clear his airways if he vomits and I am in no position myself to take him or even go to the ER. I've only stood up twice today, outside of going to the washroom. The flu or pneumonia is the worst thing he can get. And yes, he got the swine flu, seasonal flu and pneumonia vaccine six days before contracting the swine flu.

Thank you.

Update: As of today (Friday), I am starting to feel a bit better. Dear Son went to school and did well, according to his teacher. He was exhausted and slept the entire day when he got home. I think it may have been a bit much for him. We'll have to take it slow.

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.

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~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~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.

Dear Son Medical Update~Progress

Dear Son remains at Big Academic Medical Center and will be there through Wednesday. GI and GI surgeons poured over the CT scan of the abdomen and have seen Dear Son. GI surgery states that he has Pneumatosis Intestinalis. Essentially, Dear Son has a significant amount of free air in the lining of the bowel wall. They are not sure how it got there however typically there are a few causes of this: 1) medication, 2) infection and 3) not enough blood flow to the area. This condition is typically seen in preemies but rarely in adults. The free air is located on the right side of the bowel lining and some on the left.

In Dear Son's case, he doesn't have any infection. He doesn't have a temperature and the blood works looks good. His abdomen is not distended nor does he have diarrhea and he is not constipated (Actually, he's totally cleared out!). He does not have any bloody stools. They did a stool sample to make sure that he didn't show any signs of this (the blood can be microscopic) but I knew he didn't have any bloody stools because I change him all the time. I also knew he wasn't backed up because I track bowel movements and between his all natural formula with fiber and the Miralax, it wasn't an issue. That's the good news.

They said that there are cases in the literature of this with prolonged use of Miralax. The culprit seems to be Sorbitol, which is in Miralax, so they reviewed all of his seizure medications to determine if Sorbitol is in them. Dear Son is on six seizure medicines, in addition to his VNS. They found that three of the seizure medications, Lamictal, Phenobarbital and Valproic Acid, contain Sorbitol. They have left him on the seizure medications but discontinued the Miralax for now.

In isolated cases of Pneumatosis Intestinalis, the cause is most likely an infection. While Dear Son does not show any signs of infection, they still must treat it as such so he is on two antibiotics both via the IV. He is being treated with Flagyl and Ceftriaxone. One has a seven day course which ends on Wednesday so we know he will be hosptialized until Wednesday at the earliest.

Since he doesn't show any signs of infection, they assume this is incidental. They are treating him by stopping his feedings to give his bowels a rest.

On Friday morning, they put a new IV in his hand and on Friday evening, put an central line in him so they could give him nutrition via the IV, in addition to his antibiotics. They weren't sure if they could get a central line in since he's a hard stick with the Scopolamine patch drying up everything, however fortunately, they were successful. It was also challenging because Dear Son's biggest risks are sedation and aspiration. Sedation is a big risk due to respiratory depression; last May they used a sedative that depressed his respiration and he developed a mucous plug and his lung collapsed. Aspiration is a big risk because he can't clear his airway. The central line was a big risk for him since it required sedation and required him to lie on his back. Since he can't clear his airways, we had two risks here. Fortunately, they were able to use a light sedation like they did for the MRI and it worked.

Note: As parents, you always want to understand the medical risks for your child and to ask questions. In this case, I wanted to know what sedation would be used. I also ask them to spell it and wrote it down. I wanted to know how they give it, meaning do they give a dose and does it put them to sleep or is it continuous. In this case, it was continuous and the sedation is given via the IV during the entire length of the procedure. Finally, you need to understand how the sedation works. In this case, the sedation will lower his heart rate and blood pressure as opposed to suppressing his respiratory system. They used Precedex, a short acting sedation, which does not cause respiratory depression, a risk for him. I should also note that on Tuesday, when they did the MRI, they used this as well. That was good information to have because they were debating which sedation to use and I said that the Precedex was used for the MRI. Finally, know what the side effects are and how long the sedation should last. In this case, the side effects are low pulse and low blood pressure and the sedation should last from 1 to 6 hours after it's been stopped.

In the case of the MRI on Tuesday, there was a glitch-they had to use a special coil because Dear Son has a VNS (the VNS is turned off for MRIs and a head coil needed to be used) and when the head coil could not be plugged in, they had to take him to the adult hospital's imaging center to perform the MRI. This meant that Dear Son was sedated for 2.5 hours versus the hour or so for the MRI. You want to be aware and note what is going on, in case things don't work out as planned. You also want to write everything down and keep good notes. In the case of the MRI, when his blood pressure and pulse were low, I was able to give the docs in his room information on when the sedation was stopped, so that we had a time frame to know when the sedation would be wearing off.

In addition, since sedation and aspiration are big risks for Dear Son, it's important to be aware of what people are doing and using since they don't always communicate well between departments. In Dear Son's case of the MRI, he came up from the MRI with a very low pulse (63) and low blood pressure (71/30), both of which are not normal for him. You should track your child's pulse and blood pressure at the office visits so you know what is normal for them. In this case, they were able to consult with the Pediatric Intensive Care Doc and gave Dear Son more fluid which increased his blood pressure and then he awakened shortly after that. I was also able to give them this information when we came back from getting the central line.

As a parent, I view myself as part of the medical team. I am an advocate for Dear Son and as his advocate and part of the team, I am there to give and get information on what is being done. That does not mean that I am making decisions for them but rather, giving them and getting from them imporatant information for the best possible outcome for Dear Son.

So in summary, they believe it's incidental and are treating it with: IV antibitiotics, stopping feeds to give his bowels a rest and switching him to IV nutrition. When we do resume the feeds, we need to go very slowly. Actually, we were going very slowly up ever since he left the hospital in November. Going forward, the only thing we could do is a colonoscopy, but that can't be done with the Pneumatosis.

While there can be some pain with the Pneumatosis Intestinalis, they do not believe that this is the cause of his crying. In review of the CT scan, they noticed that his bladder was huge. In fact, Ped Neuro Doc said that he had never, ever seen a bladder that large. They think that perhaps Dear Son is retaining his urine due to his Scopolamine patch (he has a Scopolamine patch to dry up secretions in his throat since he can't swallow due to the disease progression from his progressive neurological disease.) The Scopolamine patch can cause urine retention, which can be quite painful. The Scopolamine patch essentially dries up secretions, which means that it dries up Dear Son's saliva, but also does not allow a person to sweat and make it hard for them to urinate. It is typically used after surgery and for motion sickness however it is also used for cases like this. We had tried Botox injections and Robinul prior to using the Scopolamine patch to dry up his secretions and none of them worked. The Scopolamine patch has been great at drying up his secretions and without it, Dear Son couldn't breathe since he can't clear his airways.

Once they thought he might be retaining his urine, they did a catheter after he voided to measure the amount of urine that was left in his bladder. Two of the times there wasn't anything significant and one time there was more. So in a twenty four hour time period, they had put one IV in Dear Son, put a central line in and put catheters in his penis three different times. My poor baby! That hurts!

Note: As an FYI to other parents, I am always very protective of Dear Son whenever someone wants to put a catheter in since most residents in the ER will almost always want to do this to look for a urinary tract infection, which he's never had! Unless they have a very good reason, I will always challenge this since it hurts. Most residents and medical people have almost never had this done and don't realize how painful it is. In this case, it was necessary and I was o.k. with it but in cases in the ER, I always insist that they pursue non-invasive tests first and I challenge the Attending Doc unless there is good reason. You have to be a good advocate for your child.

Since that time, I started watching him and noticed on a few occasions that he was in pain some ten minutes prior to urinating. He seemed like he had trouble trying to urinate. I shared that with the doctor and they may be consulting with Urology.

They discussed using a contractility agent (meaning something that works against the Scopolamine to help him urinate) but prior to that decided to use just 1/2 of a Scopolamine patch. Since it's not recommended that you cut the patch, we are using tape and then placing half of the patch on his skin and the other half on the tape so only part of it is absorbed. Since that time, he urinating quadrupled and he is crying out less.

At this point, they are watching him and determining next steps. I will return to the hospital today and may not be able to give you an update until Tuesday or Wednesday. We don't have a release date until we get the crying resolved or the urinary retention issue resolved but at a minimum, he'll be there until Wednesday.

Thank you for all of your comments and support for Dear Son.

Dear Son Medical Update~Answer?

It's been a busy week. Dear Son was admitted on Sunday and a variet of blood work was done, including some non-specific markers for infection. The blood work, along with seizure labs, urinalysis and urine culture were all negative. A pelvic x-ray was performed on Sunday to see if there might be any reason for the crying since issues with the pelvis can be difficult to detect in a physical exam. Yesterday they did an MRI and today they did a CT scan of the abdomen with contrast.

The radiologist just read the exam about twenty minutes ago and found "free air in the bowel wall". That's the "official" term. The resident just called me to tell me and I don't have a whole lot of information. From what she told me, there can be a few causes of this: medication, infection and not enough blood flow to the area. They are calling the pediatric surgical resident now to do a physical exam on Dear Son. Since they don't know what caused it, they'll stop his feeding, since feeds require blood flow to the area. In addition, they'll start him on IV fluids. They'll do another CBC test and a stool test (sorry I didn't get the name) to see if there is fecal blood. I asked if I could see it if there were blood and she said sometimes yes and other times no, because it can be microscopic. I haven't seen any blood in his stool and I change his diapers all the time.

The other good news is that he doesn't not have a fever so there probably isn't any infection. In addition, his belly is soft and he's not vomiting. All good signs.

This also fits with why he didn't like to lean back very much. He would cry when I would try to put the footrest up on the recliner and also cry when Dad tried to lean his bath chair back to wash his hair. A few weeks ago, Dear Son would scream bloody murder when he would recline the bath chair leaning him back in the bath chair; when Dad gave him a bath the other day, Dear Son was o.k. and not crying like he was. Over the past few weeks, Dear Son was crying a lot so it was very hard to pinpoint any one spot where he cried more than others.

At this point, we'll probably have to wait and see what the pediatric surgeons say tomorrow. I did tell the resident that the ARX gene mutation can express itself in this area so I really don't have any way to know if there is any connection to the mutation or if this is just a random event.

I'll update you when I have more information. I had to work today so I am home tonight and I'll return to the hospital tomorrow morning. I may not be able to update you until I return home but I'll do my best.

Update~10:59 a.m. 1/7/10: The free air is located outside the bowel wall and is significant. The GI surgeons have been called in and are deciding how to resolve this issue. I suspect that since it's significant, it will most likely require surgical intervention. Just a guess on my part.

Back to the Hospital

Dear Son's crying episodes have continued despite medicine changes. I have been paging the doctor almost daily now and we've been trying some different things without success. Last night, he cried on and off all night and I am exhausted. Nothing I do seems to help him. Out of desperation, I paged the doctor again today and he'll admit him tomorrow. Dad's working today and I can't get him there without some help. I'll post again once I have some information. Hopefully, we can get the MRI done while we are there. At this point, I am desperate to rule out anything that might remotely be a cause for this crying.

Dear Son Medical Update~Back Home

It's been a long week. Dear Son was released from the hospital last night.

We went into Big Academic Medical Center on Tuesday for extended EEG testing to see if seizures might be the source of his crying/pain. When we arrived, they were quite surprised at the extent of swelling of his left calf, ankle and foot. The Attending Neuro had concerns that the swelling might be related to his heart so he ordered several tests below along with a chest x-ray.


Our Ped Neuro Doc came by later in the day and found the swelling to be quite impressive and wanted to make sure it wasn't deep vein thrombosis. He also had concerns as to whether or not the yelling/crying Dear Son was doing was really pain per se and thought the EEG looked pretty good at that time (he had been hooked up for around 2-3 hours at that point.)


Over the next day or so, they did an Echo Thoracic exam, a Venus Doppler, an Arterial Doppler along with an EKG. He was also examined by a pediatric cardiologist. All of the tests came back negative. The cardiologist determined that the blood was pooling in his foot/leg due to the lack of muscle tone and movement of his left leg. He recommended elastic bandanges and massage along with leg boots to help get the blood flow back to his heart. Dear Son had been examined by Ped Ortho Doc early Tuesday morning and had determined that there wasn't any sprained ankle or broken bones, etc. He felt the leg swelling was positional. I was concerned that perhaps Dear Son had twisted his ankle when Dad lifts him into the SUV since Dear Son can't weight bear or move his legs/feet. As a result, when he turns him to get him into the vehicle, Dear Son's feet remain planted in the same position and don't turn when he lifts him. I was less concerned about any broken bones however the information was good to have.


On Wednesday, I made certain to press the EEG monitoring button every time Dear Son cried/yelled out with the exception of the time we went for tests or the time they were changing the IV, etc. He had cried out over 55 times that day and it was exhausting both for him and for me. At home, he had been crying out a lot more than that so I was curious to see if these were correlated in any way to seizure activity, and they were as well.


The Attending Neuro Doc, who reads all of the inpatient EEGs, determined that 75-80% of the time, Dear Son's cries occurred after an electrical discharge or burst of electrical activity. While these "bursts" aren't seizures per se, they were all coming from the exact same part of the brain, the left temporal lobe of the brain. (I should also mention that Dear Son's EEGs are all abnormal and have been for many years so these electrical discharges are in addition to his regular electrical activity.) He recommend an MRI to determine if there was a lesion in that area and then if so, brain surgery to remove it. He stated that he prefers to treat things rather aggressively and that since the crying was so hard to deal with due to the frequency of the crying that this would be an option.


I have been going to Big Academic Medical Center for eighteen years so I actually know this particular doctor fairly well and he's treated Dear Son on many occasions. He is extremely bright and is usually right on the money in terms of diagnosis. At this time, he also recommended pulling back slightly on two of Dear Son meds and increasing one of the nighttime meds to help Dear Son get through the night.


Our Ped Neuro Doc is more conservative however and did not agree with the treatment plan. He didn't feel the crying/pain was related and preferred to see if the medicine changes would have an effect first and then if needed, we could do an MRI as an outpatient. I had hoped we could get the MRI while we were there, since it is so difficult to get Dear Son to an appointment but also because he was more stable and that would have been pretty close to the best scenario in terms of having him prepared for the test since he was out of it and no sedation would be needed and also because we could stop his food and have less risk of aspiration for the actual test. Dear Son can't lie on his back since he can't breathe very well and due to aspiration and he would have been about as stable as we could get for this exam. I did express my preference for having it done now however he felt that we could do it later if needed.


I also wanted to get the MRI out of the way. Whether or not we would do a surgery for Dear Son would require a lot more thought and discussion but at least I wanted the information since it would help relieve some of the worry that something more was going on. There would also be more discussion whether you perform brain surgery on a child with a progressive disease and more discussion as to the surgery risks for him and whether or not he'd survive another surgery of any kind. A lot to think about for sure. In addition, it will be interesting to see if anything else changes once he has completed the methadone weaning. We just completed week 1 of a three week weaning. They do not think the methadone weaning is related in any way to this nor do they think his extensive perspiration is a result of the weaing however it is quite unusual that Dear Son is sweating so much considering he has the Scopolamine patch. In the summer, he never sweats, he overheats and cries out in pain instead.


In the end, we'll follow our Ped Neuro Doc's recommendation. He's the man who has taken great care of Dear Son for almost twenty years. He's also very bright. I have great respect for him and he knows Dear Son the best. He's the one I call every time Dear Son is in trouble and he's the one who manages everything for Dear Son. He makes the time to see us every time we are in the hospital, regardless of whether or not, he is the attending doc. I couldn't ask for anything more. I am fortunate to have such good physicians looking after Dear Son.

As for Dear Son, the medicine changes that were made on Wednesday evening initially resulted in more crying episodes however he did seem to be more alert although was still not himself by any stretch of the imagination. On Friday morning however, he was definitely more alert. He looked great-his skin looked great, his eyes were open in the morning and overall I don't think he physically could have looked better. When I talked to him, he actually smiled and when I asked him for a kiss, he gave me a kiss. He had not done that in over seven weeks. So that was better. Later in the day, he seemed to be coming around a bit. When one of the younger housekeepers came in to say hello, he practically strained his neck trying to check her out so I asked her to come over to the other side of the bed so he could see her. She did. Then later in the day, when another worker came by, he heard us talking and started saying "hi" to her. He said "hi" seven times to her. So that was definitely better and more like the old Dear Son. I was so happy the entire day that I could not stop hugging and kissing him the whole day. I was worried as to whether or not I would ever see the old Dear Son.


Dear Son contined to having crying spells on Friday and had some 17 episodes between 9-10 a.m. I didn't track the ones from 6-9 a.m. He had fewer in the afternoon and then more when he got home some during the night as well as this morning. I can't say that they are decreasing per se but they tend to come in droves and then stop for a while.


They expect it will take two weeks or so for the medicine changes to take full effect. We'll get labs then and take it from there. Overall, I think it was a good hospitalization in many ways. I got definitive answers on his left leg and we have more information with regards to the crying episodes.


Dear Son also had a very special visitor when we were there. He brought his whole entourage with him along with some gifts. I'll tell you more about our "secret" visitor once I download the picture.

Dear Son Medical Update #12

Things are starting to improve a bit. Yesterday, I had to work and Dad watched Dear Son for a few hours. He was alert most of the day and even smiled when I came home from work. That's the first time since I left the hospital.

The nights remain pretty rough however. I had been doing chest pt and the nebulizer every four hours, and thought perhaps we could stretch that a bit at night however that's not proving to be the case. He really has a hard time lying down, despite the fact that I have his hospital bed raised up to the highest position. At 1 a.m. I did his chest pt and nebulizer and had hoped that perhaps he would sleep some six hours or so however that wasn't the case. He started choking around 2:30 a.m. so I got up and did some chest pt and then I was up again around 3:30 a.m. or so. It's hard too when I turn him over on his left side.

I am having to sit him up in the recliner for over twelve hours a day. His oxygen saturation is a bit better when his feet are on the floor however his left foot has started swelling quite a bit so now I try to lean him back in the recliner but he tends to cry out somewhat as it's harder to breathe. The recliner is also pretty boring for him however he can't tolerate lying down. I just put him down now so I'll have to get him back up around 1 a.m. for a few hours.

He's also having a few seizures here and there, but I am using his vagus nerve stimulator to control those. Fortunately, Ped Neuro Doc increased the settings prior to us leaving the hospital, so I think that helped.

He seemed a bit tired today and not as alert. He did perk up when I brought out his Mr. Christmas Santa Surprise music box today. He listened to that for a while while I put up some Christmas decorations.

I certainly feel more comfortable now, at least during the day. I have a digital pulse oxygen meter that I got from a nursing friend of mine, and his oxygen saturations are starting to improve a bit. I got it on Saturday and back then, his oxygen saturation was only 90-91 at it's highest and 87-88 when he had difficulty breathing. Now, it's up to 93-94 during the day, which is an improvement. He still cries out at times and I've noticed that it's only 87-88 then. His saturations decrease at night of course since he's lying down which is still problematic for him however the fact they are increasing during the day mirrors the fact that he just looks a little better.

So overall, I think he is on his way. I'll be glad when we get to the point where he can make it through the night breathing wise. That way, I'll only be up when I have to turn him over.

Our cat Wiggles however is a bit of a problem. I don't think I mentioned it before but when Dear Son went to school, I'd be up early to start his g-tube feeds and then I'd go back to bed until 5:45 a.m. or 6 a.m. when I'd have to get up to get him on the bus by 7 a.m. Well, I gave the cat some positive reinforcement twice a few months ago when he got me up at 6 a.m., so now the cat wakes me up at 6 a.m. sharp every day despite the fact that there isn't any school. He stands at my pillow and meows until I get up. In addition, he doesn't like me doing chest pt on Dear Son. He bites me once every time I do it; I tell him I am not hurting Dear Son but I don't think he believes it.

He is giving Dear Son lots of kisses though. He comes over and meows when I start chest pt and I have to take him over and rub Dear Son's hand over his fur to pet him. He watches over Dear Son all the time. When he was in the hospital, Wiggles used to stand out in the hallway looking for Dear Son to come home. When he didn't, he'd walk around the house crying. He's much happier now.

Dear Son Medical Update #11

Last night I took Dear Son to the emergency room. His breathing had been quite labored since we had been home and I worried he might die on me. That was frightening to say the least. Last night, around 5:30 p.m. or so, he began yelling out in pain and was having a hard time breathing. I paged Ped Neuro Doc however Dear Son kept yelling out and was breathing so hard that I ended up taking him to the ER. He had been running a small fever all day, around 101 or so, and I had been doing all of his chest pt and nebulizer treatments every four hours with an extra nebulizer treatment during the night. Despite that, he had been struggling to breathe most of the time, especially when he was lying down, so I had kept him in the recliner for most of the day. I was afraid to lie him down in his bed.

It was a lot of work to get him dressed, into the wheelchair, into the car and then in to the emergency room. When we got there, his oxygen saturation was around 86-87 and finally settled around 91 within the five hours we were there. His temperature was normal although I had been giving Motrin and later Tylenol to keep it down. I had been doing this regularly since we left the hospital. Overall, I think moving him around must have helped his lungs a lot (plus the fact that he was sitting in his wheelchair, which had strong side supports and can hold him straighter) because his breathing seemed much better in the emergency room. I think it also helped me just to have him evaluated. I had been working so hard to make sure I was doing everything possible to help him get better and because he had been working so hard to breathe over the last two days, I felt death was imminent. I was a bit afraid of him dying on me and what would happen, etc. so the visit helped give me some peace of mind. I know we are getting to the end of the road with him since his lungs are so weak. I think I finally understand what the ICU docs meant last May when they were concerned about whether or not they could get him off of the vent. I see now how hard it is for Dear Son to breathe and better understand that getting off the vent isn't that easy. I also hadn't felt comfortable enough with him over the last two days to even take a shower without having someone around to watch him. I have to remind myself that he was on the non-rebreather at 12 liters of oxygen less than a week ago and that he has only been off of the oxygen and breathing on his own since Wednesday.

He slept good last night and opened his eyes for a little bit this morning so I felt better. He'll probably be out of it the rest of the day. While I certainly felt he was highly unstable for the past two days, I feel this morning that he's a little better and would rate his status as guarded.

Dear Son Medical Update #10

Photo of Dear Son last night at home. While it looks like he is awake, he is sleeping.

Since my last post, Dear Son's fever has continued to drop. As of midnight it was down to 100.1 and although it was up slightly this morning around 101, I am not too concerned with the fever since this is the only time that it has increased since we left the hospital Thursday afternoon.

I have continued giving him nebulizer treatments and chest pt every four hours and Motrin every six hours. I am sitting him up the recliner for four hours and then moving him to his bed for four hours with the head of the bed raised almost all the way up. He still sounds very noisy and rattles quite a bit. I can't say that I feel very confident of his respiratory status right now. I did ask a nursing friend of mine to see Dear Son yesterday since he was so noisy and to see if I needed to take him back for medical treatment. She evaluated him and thought his left lung sounded good whereas the right lung was dimished. She felt that the rattling was o.k. since it meant the secretions were breaking up but that he wasn't wheezing. She thought he looked good as did Dad.

Around midnight, I moved him from the recliner to his bed to do the chest pt. I finished everything around 12:45 a.m. however he was so noisy and his breathing seemed labored that I moved him to the recliner at 1 a.m. where he remained until now. I did not feel very good about it at all and contemplated calling 911. I thought about what they might do if I did-they would do the nebulizer, do chest pt, do a chest x-ray and blood work to see if he had a bacterial infection. I am doing the nebulizer and chest pt and I am fairly confident that without a fever, he doesn't have a bacterial infection. They could suction him however and that would help but I just didn't know. (As an FYI, I am out of durable medical equipment dollars for the year so on January 1st, I can order a suction machine; our secondary insurance doesn't cover respiratory at all.) I guess the real issue was that I did not want to go back to the hospital for any reason. I went on-line to see what it said about chest rattling and if I should have him seen. That wasn't a good idea because when I google it, it came up with chest rattling as a final sign before death. I nearly had a heart attack then!

My plan this morning is to page Ped Neuro Doc in an hour or so and see what he says. I imagine I won't be able to get him over the holiday weekend but I'll attempt it. If he's not available, I am going to call another good friend of mine who was a Director of Nursing at a place with all special needs children. She oversaw kids with trachs and vents, all of which were special needs for years. I've never had her evaluate Dear Son before however we've been friends for a few years now and she knows Dear Son. Other than that, I'll continue to watch him and if I see any further deterioration, I'll just have to bring him back him and let them look at him. At least I'll have some clarity. Probably my biggest issue is that he really hasn't come to since I brought him home. He's opened his eyes in the morning however he hasn't really come around during the day or evening at all. He is aware when he needs to be changed but other than that, he's pretty much unresponsive and sleeping most of the time.

11/28/09~Noon Update: I just spoke with Ped Neuro Doc and he thinks that we are probably o.k. since he doesn't have a fever and we are doing all we can. He said we could increase nebulizer treatments to every two hours but that can get old. I did tell him that I actually gave him an extra nebulizer treatment at 1 a.m. last night and the night prior to help Dear Son out. He said they may try to get a visiting nurse out here on Monday (I don't have a nursing benefit on either insurance though.). He asked me to follow up with him tomorrow. After that, my nursing friend called and she is going to bring out a pulse oxygen meter to give me more information.

Note: Dear Son is eighteen years old and suffers from a progressive neurological disease along with intractable seizures, dystonia and severe mental retardation due a mutation of the ARX gene. He most recently had the swine flu and a viral pneumonia and was hospitalized from November 1st to the 26th.

Dear Son Medical Update #9

As I mentioned previously, after I left on Sunday, Dad stayed with Dear Son and they didn't perform any deep suctioning. I spoke with Dad and they had not done anymore suctioning down his nose nor did they suction him at all, even after Dad asked. On Monday, they did do some suctioning but only in the mouth, according to Dad and not down his throat. Dad managed to sit him up in the wheelchair for quite some time and over the course of the day, things seemed to get better. They took him off the IV fluids, ramped up his feeds and said they'd release him in 48-72 hours. All of this seemed quite unbelievable to me, considering the condition he was in on Sunday. They seemed to believe that he was a lot better.

This was all pretty unbelievable to me and I was not sure what was going on. I had difficulty getting medical information from Dad since he doesn't ask the same kind of questions that I do. After they switched to the high humidity face mask, they had started to wean his oxygen.

On Monday evening, I paged Ped Neuro Doc to try to get some answers. I said I was confused at the sequence of events since he was suddenly doing better and they were make some pretty dramatic changes. They hadn't done any suctioning, hadn't ordered a chest x-ray, removed the IV fluids which he was on and were ramping up feeds. He was quite surprised as well and agreed to speak with the ICU Attending Doc the following day. I had also asked him if it was safe to remove the IV fluids since he couldn't go back on full feeds (full feeds include formula and water) and also asked him to set the schedule for the feeds. He had done this on past admissions and it took weeks to get Dear Son back to previous levels.

On Tuesday, he saw Dear Son and had spoken with the ICU Attending Doc. She had stated that they had performed pretty aggressive deep suctioning on Dear Son and it was effective. Ped Neuro Doc said that he had seen Dear Son and was shocked at how he looked. He said he looked 100% better and he would not have believed it if he hadn't seen it. Dad had put Dear Son up in the wheelchair and had him up on Monday for 1.5 hours. I am not sure if that helped or what turned things around however it was good that things were looking up. It still seemed like things were going incredibly fast given he was on a vent some eight days prior and he was still quite fragile.

Late Tuesday evening, around 6 p.m. or so, the ICU team moved Dear Son to a regular floor. By this time, they were aggresively turning down the oxygen. On Wednesday, they continued to wean him and by mid afternoon, he was down to a half of a liter of oxygen on a nasal cannula. He continued to desat throughout the day and began running a fever on Wednesday evening. Respiratory treatments which included nebulizer treatments with albuterol, chest pt, the vest and cough assist were reduced to every four hours from every two hours previously. He was still on potassium and they were weaning the Methadone. He has been sleeping most of the time and hasn't really been alert like he was on Monday or even on Tuesday. It is not unusual though for Dear Son to sleep for weeks after a discharge.

On Thursday, Thanksgiving, I was really anxious to go home. Despite a rising fever, Dear Son had been off all oxygen since around 3:30 on Wednesday with only one desaturation. It had been explained to me that a person can have some desaturations at home normally however because they are not hooked up to a monitor, you don't know. At the hospital, since the monitors are hooked up, you can follow it easier. Prior to removing all of the oxygen, his saturations were around 97-100 and once it was removed, he stayed around 94-95.

During rounds, we discussed his status and possible discharge. We talked about his increasing fever however the Pediatric Attending Doc said that it is not uncommon for kids with central nervous system disorders to have uncontrolled fevers. He said that if a mother were to call in to speak with a physician and tell them that the child had a fever of 103, but the child was not vomiting, did not have any respiratory distress or other signs, they would tell her to watch the child. He said that the course of treatment is the same at the hospital and if they are just watching the patient, then I could do that as easily at home. (I should mention that he had a problem with a fever last Saturday and he ran it for some 48 hours. They had performed blood cultures and nothing grew.) On Wednesday, they performed more labs and then again today they did another blood culture. All of the lab work to date has been negative. So although he did have a fever, there wasn't anything to indicate that he had a bacterial infection of any kind. He also was not having any respiratory distress. The Attending also explained to the residents that because he's been in the hospital that there is a tendency to think that they should keep him when in fact if a mother called from home and if they'd tell her to watch him, then the advice isn't any different just because he's in the hospital. Essentially, if they'd tell a mother who called in to watch her child at home and if the same circumstances presented themselves for an in-patient then the advice to watch the patient would be the same and you can watch them at home as easily as you can in a hospital.

I also indicated that I had a nebulizer and that I could perform chest pt and the nebulizer treatments with albuterol at home. They had prescribed a vibrating vest for him however I explained that we had exhausted all durable medical equipment (DME) dollars for the year so I couldn't get that. (Dear Son's primary insurance has a $2000 DME limit per year.)

During rounds, I also clarified with the Attending on what I needed to do if the fever continued to climb. I asked if there was any number where I should be concerned and seek medical attention. He stated that as long as there weren't any other symptoms, that the fever alone was not an indicator for medical attention although if it were 106 or 107 then I needed to seek medical attention regardless. I specifically asked if it reached 104 let's say, do I need to call and he said no. He reiterated that kids with central nervous system disorders run high fevers so I am o.k. unless he's in respiratory distress. With that they agreed to discharge Dear Son.

I had to wait for Dad to come pick us up since he needs to lift Dear Son. Throughout the day, Dear Son's fever continued to climb. It went from 100.8 on Wednesday evening to 104 by 2:30 Thursday afternoon. We left at 4 p.m. Needless to say, I was slightly uncomfortable about that however I knew that the CBC and blood cultures were normal so there wasn't any bacterial infection. Without a bacterial infection, there wasn't any reason for antibiotics. In addition, they explained to me previously that Dear Son had a 14 day course of Vancomycin and Zosyn in the ICU and he also had another 48 hours of antibiotics earlier in the week in the ICU and yet no bacteria grew in any of the cultures.

We arrived home around 6 p.m. By 7 p.m. his fever was down to 102.9, by midnight it was down to 102.5 and now at 3:17 a.m. it's down to 101.2. I am doing nebulizer treatments every four hours along with chest pt. Around 8 p.m. I moved him from the recliner to his bed and he slept until midnight when I got up and gave him his seizure meds, nebulizer treatments and chest pt. At that time, I thought he sounded pretty noisy and his breathing was more rapid. I can't say I've really felt very comfortable since he's been home in terms of his status, but I'll just have to watch him. Since he sounded so noisy, I got him up and put him in the recliner at 1 a.m. and did a second nebulizer treatment to open the airways. That's what they would do if we went to the ER. At this point, I think we'll have to wait and see. I would like his breathing to get a little better before I'll feel good about this. I'll probably keep him upright for another hour then do his nebulizer and chest pt.

As for feeding, he'll remain on continuous feeds for a few weeks meaning he gets his feeds/water very slowly 24/7 to prevent aspiration. They also increased his Vagus Nerve Stimulator settings while we were in the hospital.

So in summary, Dear Son is now home where I will continue to monitor his temperature and respiratory status. He is on g tube feeds 24/7. I continue to give respiratory treatments with the nebulizer and chest pt every four hours. He sleeps most of the time and is not really alert. He opened his eyes once on Thanksgiving so we still have a ways to go. Although he was quite alert on Monday, he really hasn't been that way since. It will be weeks before he will be strong enough to go back to school.

Thank you for all of your prayers, wishes and support for Dear Son and our family. Your support means more than you could know. Please continue to pray that his breathing gets easier and that he makes a full recovery. I hope the discharge was the right decision and sincerely hope and pray we can avoid a re-admission.