Tablescape Thursday: A Hospital Tablescape One Year Ago

Sometimes, it's hard to forget. Just one year ago, we were one week away from my son's Make a Wish Trip to Disney. I thought it would be great to go on the trip on his 18th birthday. It would be the best birthday ever! On Halloween, he had a slight fever that wouldn't go away. The next day we took him to the Emergency Room to check the fever and to find the source. By the time we got there, he had low oxygen and sepsis. Within 48 hours he was on a ventilator fighting for his life with the H1N1. Our trip was cancelled.

His birthday arrived on November 12th. It was a Thursday. What was supposed to be his best birthday ever, was his worst. Instead, he was on the ventilator. On Friday, the 13th, birthday flowers arrived for him.

They were beautiful. Later that night, he had complications and they were at a turning point. They had to try to get him off the ventilator or he wasn't going to make it. Somehow, you really don't like those odds on Friday the 13th. They removed the ventilator and he struggled to breathe the entire night. On Saturday, the 14th, the sun shone brightly through the room of the Pediatric Intensive Care Unit. My son has been in the hospital some 60 plus times however when the sun shines in the room in the ICU, it is usually a turning point and sign that things will get better. That day, I knew he would make it, although he was far from being out of the woods. I was so happy to have him off the ventilator, that I decided to make a pretty tablescape.Proof that you can make a tablescape anywhere, I asked the nurse for two perfectly pressed pillowcases. She brought me a few that were the best pressed as hospital linens go. I folded them over and placed them on the hospital tray. I added Dear Son's birthday flowers as a centerpiece and brought out my plastic plates and silverware that I keep in a box for times like this when I am in the hospital. It saves me time from having to hunt down a plate and plastic silverware, which I abhor. (To be honest, I dislike paper plates, plastic plates, plastic silverware and the like.) I have to use plastic plates when I am in the hospital since real china just doesn't transport well. The tablescape brought me great joy but something was decidely missing. I decided to take one of the carnations and place it in a medicine cup. I placed it in the right hand corner of the hospital tray and somehow this tablescape was now complete. The tablescape brought me great joy that day. It wasn't as pretty as the tablescape that I created for Tablescape Thursday, the afternoon before we left for the hospital. The tablescape that was sitting at home in my dining room. No, it wasn't as glamorous as that by any means. But this one brought more joy. It was a celebration of life, of my son being off of the ventilator. And that is ultimately what tablescapes are all about-about celebrating the good times in life with people you love. And that day, I celebrated the tablescape with my son.

It would be a few more weeks before he could go home and when he did, it tooks months to recover. In May, we were able to take his Make a Wish Trip which he enjoyed. To see more tablescapes, please visit Susan at her blog, "Between Naps on the Porch".

Make a Wish Trip Approved~This is what he'll be doing!

Picture of Dear Son in the swimming pool at summer school a few years ago. His aide is holding him and his teacher is behind him.

In a few weeks, Dear Son will be doing this...swimming!

We took Dear Son to the neurologist today. While we were there, I told him that I'd like permission for Dear Son to go on his trip. I said that I didn't think Dear Son would get any better if we waited and there is a good chance that if he got sick again, he'd never be able to go. Also, with Dear Son's Scopolamine patch, he can't be out in the sun or he'll overheat so we need to go before it gets too hot in Florida. He agreed. I contacted our sponsors today and they'll be getting back to us soon. As you may recall, we'll be going to Disney World and staying at the Give the Kids the World Resort. We were scheduled to go last November to celebrate his 18th birthday however he got the swine flu one and viral pneumonia one week before we were scheduled to leave. Instead of celebrating his birthday in Florida, he was on life support in the ICU.

Prior to his hospitalization, we got a life vest for Dear Son so he could go swimming. You can see how relaxed he is in that photo however now that's he's grown, we needed to get him a proper life vest that wouldn't slip off. The life vest we got, was a bit challenging to get on so I had it altered a bit. In addition to zipping up the front, it also zips up the side. I had trouble getting his arm in the armhole of the vest, not because it was too small, but because Dear Son doesn't move very well and can't slip his arm into a vest like we would. To make it easier, I had a side zipper put in. Now I can lay him down, put the vest underneath him and zip it up on the side and the front without having to bend his arm. We plan on taking him swimming in Florida so he can relax.

I also asked permission for Dear Son to attend school one more day a week. He gave approval for him to attend up to 1/2 day, two days a week. I think we'll have to space it out a bit, say maybe a Tuesday and then Fridays. That would give him some recovery time in between.

All in all, a good day.

Update: The Make a Wish people contacted me today. They have already booked the hotel and are booking the flights.

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 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-Back to the Hospital

Dear Son goes back to the hospital tomorrow for some long term EEG monitoring. We'll be there for two or three days.

Hopefully, they'll figure out what is causing Dear Son's pain. He continues to cry out and has a particularly hard time leaning back. Dad gave him a bath today and leaned him back in the tub (Dear Son has a hydraulic bath lift that leans you back slightly.) and Dear Son yelled out in extreme pain. It's very frustrating when your child can't speak and tell you what is wrong. It's been really hard on me hearing him fuss and not being able to help him.

On a better note, I asked Dad to take him last night and I got a full night's sleep. First one since Thanksgiving Day when I brought him home. I even had to set the alarm clock. Imagine that. Dad on the other hand, was exhausted. He said he was up all night and then moving him around all day when he cried out. I think he was pretty glad to drop Dear Son at home tonight.

We'll see Ped Ortho Doc in the morning and then go to the hospital after that.

Dear Son Medical Update~Status Quo

Things continue to be fairly tough. On Friday night, after one day of the methadone, Dear Son continued to cry out all night and it didn't seem like things were getting better at all. The day was better but nights are worse. He starts fussing and crying out in pain and finally I have to get him up and put him in the recliner. That helps somewhat but doesn't take away any of the pain.

Last night, it seemed like he might be making some progress in terms of the methadone withdrawal. He cried out less however I still had to sit him up in the recliner from 1 a.m. on. Because of his breathing issues, he's not able to recline at all so he sits up in the chair upright all night.

I guess one of the biggest concerns I have at this point, is his respiratory issues. He really can't clear his airways at all and when he lies down in his bed, you can hear the noise from the fluid. It doesn't seem to help enough when I do the chest pt, yes, it makes it better, but not enough to where he can really sleep in bed or lie down very long. When I put him in the chair at night, he deosn't have enough strength to cough. He couldn't cough at night prior to the hospitalization so this isn't anything new. Sitting upright at least keeps the fluid from pooling in his lungs but other than that, he really struggles.

Still another concern is that of the swelling of his foot/ankle. Prior to his hospitalization, his left foot would swell. Now the swelling has expanded to his ankle and leg sometimes getting to twice it's size. His left leg was so big that I couldn't pull his sock up over his calf. I am not comfortable with that at all however several docs have assured me that this is not a big concern and happens in people who can't move around. I can understand that however if that's the case, I would expect both his left and right feet to swell equally and that is not happening. In addition, I can't keep it elevated because he can't breathe when I lean the recliner back. When he lies down in his bed, the swelling never really goes away. He gets up and it's still swollen. This is a picture after he just got up so the swelling should be down; you can still see the swelling in his left leg, foot and ankle. We see Ortho Doc and Ped Doc on Tuesday so I can have Ortho Doc check his ankle to be sure he hasn't twisted it somehow when Dad lifted him into the car. The clinic appointment was made some time ago so I just left it.

He certainly is not himself and hasn't been since this whole thing started. He's normally a very happy boy and there is nothing at this point that makes him happy. I don't feel at this point that a full recovery is anywhere in sight. It is taking a lot of work just to keep him breathing comfortably. I speak with the doctor tomorrow and it's hard to say if things are really better.

I am also going to see if Dad can take Dear Son for a night this week so I can get some sleep. He hasn't taken him at all since we got home on Thanksgiving Day. Typically, he gets a little nervous when Dear Son isn't doing well and doesn't like to take him. I am o.k. with that however I don't see any end in sight here and I have to work tomorrow. It's brutal going to work without any sleep. I have reduced my work schedule to one day a week indefinitely but I still need to get out of the house on occasion. Dear Son's Dad watches him so I can work and he's not too thrilled that he'll have to babysit indefinitely. He helps me with doctor appointments and other things but sometimes I just need a break.

FYI-You may also note that I often include a note at the bottom of my posts regarding Dear Son's diagnosis or medical condition. Since this blog is frequently picked up by different publishers, it gives new readers background information on Dear Son.

Note: Dear Son is eighteen and suffers from intractable seizures, dystonia and severe mental retardation as a result of a random mutation of the ARX gene; he also has a progressive neurological disorder. In November, he got the swine flu and a viral pneumonia. As a result, he was intubated and spent over three weeks in the ICU. He came home after a month in the hospital. Because of an abrupt weaning of Methadone in the ICU, he now is suffering withdrawal and they have re-started it again so they can wean him gradually.

Dear Son Medical Update~Methadone Withdrawal

Dear Son has been extremely fussy since he's been home. I had been concerned that he was in a lot of pain since he had been crying out at times, all of which had been getting worse. Dear Son rarely cries and the crying had become so intense at times, that I thought he might need to go to the ER immediately.

During the first week home, I asked what the pain was from and the doc told me that he shouldn't be having any pain. I had assumed it was his lungs and had continued the breathing treatments and chest pt as well as changing positions from his bed to the recliner in the living room. Most of the time, he'd sit upright in the recliner and could not tolerate leaning back at all. This was problematic because he'd been having problems with his left foot swelling quite a bit. Both arches swell however the left one was cold and it was swollen on the foot and the ankle, sometimes to twice it's size. I had thought perhaps that his foot got twisted getting him into Dad's SUV, since when he lifts Dear Son into the vehicle, he has to drag his feet since Dear Son can't weight bear at all. It's like lifting a living doll; he just can't help you.

Further conversations with the doc about the foot indicated that I should just elevate the leg/foot and keep it warm. I was keeping it warm but it had been problematic elevating it since he couldn't breathe as well, and that had to take priority. I did know to keep it elevated but it was harder to implement with the respiratory issues.

Over the weekend, things got progressively worse. He was crying out a lot more and screaming out at times. He was not sleeping. I was up Sunday night and he cried for some six hours. He never, ever cries like that. At one point, he was just bawling. I can't remember him doing that. I tried everything I could think of to console him. I tried sitting him up, giving him his meds, changing positions, singing to him, holding him and nothing worked.

I paged the doc a few times and asked if I should take him to the ER and he said that he'd check him out. We saw the pulmonary doc on Tuesday and she said she didn't think the pain would be from his lungs. He was moaning during her appointment and then was just crying unconsolably in the car and cried at home some more. I was up most of the night with him again.

I paged Ped Neuro Doc when I got home and said that he was having some severe pain. I told him I thought the pain could be coming from several different areas but I wasn't sure. I thought it could be seizures, too small g-tube *, the left foot, the lungs, hunger or possibly Methadone. It was a long shot however when Dear Son was in the ICU, they gave him some Methadone after they extubated him and he was only on it 1.5 weeks. I know that typically when Ped Neuro Doc makes changes to a controlled substance, he weans Dear Son for a period of weeks and asked if that might be a factor. I remembered the ICU nurses were in a hurry to get him off of the Methadone since he was on a small dose of 1/2 mg every twelve hours and I wondered if that was too soon. He agreed to see Dear Son and we arranged for that on Wednesday however there was a big snowstorm here so we had to see him yesterday.

Yesterday, we saw Ped Neuro Doc. He had some conversations with ICU and how they wean the Methadone. He thought it was Methadone withdrawal and gave him a prescription for Methadone weaning him off over a few weeks time. By that time, I thought perhaps the pain might be seizure related since the night before Dear Son had some hand movements that I thought might be seizures and the pain/crying stopped with the VNS and also coincided with the seizures on our last EEG. He had them for six seconds of every minute and that seemed to be similar to what I was seeing with the hand movement however it was not 100% consistent so I just didn't know. Ped Neuro Doc felt pretty comfortable that it was Methadone withdrawal so we are trying that for a few days. He's a pretty smart man. If that doesn't help, then he'll admit him for a one or two day EEG.

We left the hospital around five or so and Dear Son's seizure meds were due. I thought we'd be home around six so it wouldn't be a big issue however we had trouble getting the Methadone prescription filled. The first Walgreen's pharmacy said they didn't carry it and to try a 24 hour Walgreen's. The second Walgreen's pharmacy took a while. The pharmacist said he checked 40 stores for us and none of them had the Methadone. He finally found one but it was a half hour south from where we were located. The third Walgreen's had the Methadone however he wanted to know what the reason for the Methadone was-I explained Dear Son's situation. Had I known it was that difficult to get, I would have had it filled at the hospital pharmacy.

We got home around 8:20 p.m. or so. I gave Dear Son the Methadone and seizure meds and put him to bed a while later. He slept until 2:30 a.m. and then began crying some more. I finally got him out of bed and into the recliner where he stayed until 7 a.m. He cried on and off the rest of the time. I put him back in bed this morning and he's cried on and off on an hourly basis. I am hoping things improve soon.

I went on the internet last night to view some of the symptoms. Some of the Methadone withdrawal symptoms that Dear Son experienced were: dilated pupils (I forgot to tell the doc that~at times it looked liked Dear Son had bug eyes and his eyes were going to pop out of his head.), excessive perspiration (forgot to tell him that too), tremors (this might have been those hand movements I saw), elevated blood pressure (his blood pressure was high at the pulmonary doc visit and they re-took it and it was slightly lower but still high for Dear Son), diarrhea and the mental symptoms that I thought Dear Son had were prolonged insomnia and agitation. I also learned that Methadone is a cheaper drug (around $120) and some hospitals give that instead of the more expensive drugs like Vicodan and Fentanyl and a few others some of which are over $500. It is also one of the most addictive drugs. Yikes!

At this point, I just feel bad for Dear Son. I hope things get better soon. He had two doses already, one last night and one this morning. Dad changed the g-tube today; I had been having problems getting the right size delivered from the home care company. I am hoping we can return to a full night's sleep soon.

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. He has a progressive neurological disease. In November, he was intubated after respiratory failure from the swine flu and a viral pneumonia. He continues to recover.

Dear Son Update

Dear Son continues to improve every day. His oxygen saturations have increased to a normal range during the day. They are at 96-97, which is good. At night, he continues to make some progress. The saturations are not nearly as good but are improving. He has been able to sleep the entire night in his bed for the last three nights so that is good. Prior to that, I'd have to get him up after lying down for four hours. He certainly does better sitting up in the recliner however it's hard to have him sitting up for so long.

His feet continue to swell. In particular, his left foot and ankle are quite swollen as well as cold. I am keeping it warm and massaging it however there is quite a bit of fluid. I can't elevate it because when I elevate the foot rest of the recliner, the chair reclines him somewhat and he cries. His lungs seem to hurt in that position.

He seems quite fussy lately and something is clearly causing him some pain, but I can't figure out just what. I've asked the doctors why he would be in pain and they don't know. He was crying out a lot yesterday that I finally gave him some Tylenol. We see the pulmonary doctor on Tuesday.

I am continuing his nebulizer and chest pt treatments. I am doing around five treatments a day yet. He seems more congested at night and smiles whenever I do chest pt. That is the only time he seems happy. I turned him over last night around 4:40 a.m. and since he was sounding quite rattled, did the chest pt. It seems to help.

I am up a lot at night and getting extremely tired. I did the nebulizer and chest pt around midnight last night and finished up around 12:30 a.m. Around 1:35 a.m., I was up to change his diaper and then I turned him on his other side, which he can't tolerate for long periods. At 3:30 a.m. I was up turning him back over on the other side and at 4:40 a.m., I changed another diaper then did chest pt for 10 minutes and then the nebulizer for 25 minutes. He fell back asleep after that and then fussed a bit more this morning.

The 24 hour a day continuous feeds are wearing on me a bit. I've never been a fan of them since when they feed 24 hours a day, it means I am up at night changing diapers. I am changing bowel movements between 12-1 a.m. and the first thing every morning, around 4-5 a.m. I will be glad when we get back to a more normal schedule. The doctor has him on continuous feeds since there is less risk of aspiration. It will be fine for a few more weeks but I'll be glad when we can wean it back a little bit; even feeding 18 hours a day will be preferable to 24. That way, I am not up all night changing diapers.

Tomorrow he'll go out of the house for the first time since we've been home. He has some lab work tomorrow and then an appointment on Tuesday. I hope he can handle that and that we don't back track at all.

I managed to get our tree up on Thursday and finally got the lights and decorations put on the tree yesterday. I've just been so tired from being up so much that I am not very motivated when it comes to Christmas. One thing that is problematic is that normally I send out a photo Christmas card with Dear Son's photo on it. This year, I couldn't take it in November and he's not really himself right now, so I can't get a good shot. While I could use one from earlier this year, it doesn't feel quite right. The Dear Son in those photos seems a long way off from where we are now. I have to make a decision soon or I won't be able to get them printed in time. I really enjoy the photo cards since it's a nice memory of how he looked each year.

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.

Home

We just got home tonight. I pushed hard for Big Academic Medical Center to release him today despite the fact that he was running a fever that kept increasing all day. When we left, it was 104 however everything else seemed fairly stable, blood cultures were negative and he had been breathing on his own for 24 hours. I'll update you in full some time tomorrow. I have a pretty aggressive respiratory schedule to keep up with and I need to stay by his bedside to make sure he's stable. The trip home exhausted him. He's still sleeping most of the time and not very alert yet. I can't say that I think he looks very good at all right now but time will tell.

Dear Son Medical Update #8: Do or Die

Dear Son-Marks on his chest are from the central line. Bruises on his inner arms are from trying to locate a vein for the IV.

Things have gone south since I last wrote. On Friday or so, Dear Son began running a fever. He ran a fever for over 24 hours and yet they were unable to determine the source of the fever. They did some blood tests and a blood culture however no bacteria grew so the good news, if any, was that we didn't have a bacterial pneumonia. They did however start an antibiotic for 48 hours to cover it.

The lungs continue to get worse. On Saturday, Ped Neuro Doc told me that he was approached by the ICU Attending Doc and the Pulmonary Section Chief and they were worried Dear Son is not getting better. They are not sure what more they could do. He told me the odds that Dear Son will survive are around 50%. He states that they really need to do some deep suctioning on Dear Son, something that I had been quite opposed to. I have a rather weak stomach and the main reason is that deep suctioning requires a tube be placed up Dear Son's nose and then down to remove the fluid from the lungs. Bottom line it hurts. I have never met anyone who has ever recommended it nor anyone that does it that ever had it done. I can't condone something that will hurt like that for a child that can not speak, can not push someone away when something hurts, etc. I had a similar test done once and I couldn't complete the test because it felt like someone sticking a needle up my nose. It was intense pain and I would not do it for Dear Son. I had made that pretty clear.

Ped Neuro Doc felt however that based on his conversations with these physicians it was something that needed to be done. I reluctantly agreed to let them do it however I did not feel great about that decision.

What was also troubling to me is all of the different messages that I receive there. Because Big Academic Medical Center is a teaching hospital, the Attending Docs do rounds with the residents. The problem this week was that the Attending Doc never once came to Dear Son's room and had a conversation with me. Yes, I have made it know that I expect to be there for the rounds but the rounds forum and purpose is for teaching. I don't feel it's private and I don't care to ask questions regarding life issues while standing in the hallway with the cleaning people, reception people, people faxing, every nurse standing in the hallway and anyone else. That's not fair to Dear Son or to me. It amazes me in this day of HIPPA how a patient's privacy is not respected.

I told Ped Neuro Doc that it is troubling to hear things that they don't know what else to do when the Attending Doc and Pulmonary Doc never even stepped a foot in Dear Son's room all week despite the fact that I have been here 24/7. He said that the Attending Doc is timid and I said that was a personality trait and that he needs to do his job. It is costing over $100k per week in the ICU and at that rate, I felt I deserved at least a knock on the door and two minutes of face time or more to have them express their concerns and to answer any questions I may have. I also told him that we began seeing Pulmonary Doc in clinic after his May hospitalization. We saw her in August and have a follow up appointment in December. If she can't come around when Dear Son is sick and make a visit, then I won't need to see her when he's well. The entire purpose of having a doc and having them follow your child in clinic is so they know the patient and better decisions can be made.

Throughout the day, I also have multiple nurses, respiratory therapists and residents come by to check out Dear Son and listen to him. They all say, "he sounds great". Now at some point, these types of conversations and lies have to stop. If the patient isn't doing well, it does no good to have multiple messengers relay the fact that they "sound great". It isn't doing anyone any favors. And to have the Attending and Pulmonary Doc not show up at all is unacceptable. To be fair, the two prior weeks Attending Docs did come to Dear Son's room every day and talk and answer questions. As for residents, the rounds are interesting as well. It was amazing how many times they relayed inaccurate information about the patient during the rounds. In cases where the Attending never bothered to come in the room, who would have been there to correct the information had I not bothered to participate?

Late last night, they began deep suctioning. I didn't watch the first one but remained in the room. During the second deep suctioning, just two hours later, I stood up to see and was horrified at the amount of blood that was suctioned. In addition, Dear Son bled for an hour later and some 90 minutes later, this is what his face looked like. I requested to speak with Attending Doc but got on a Fellow. I stopped the deep suctioning. Dear Son looked like a boxer had smashed him in the face. I felt good about stopping that.

Photo of Dear Son's face 90 minutes "after" deep suctioning. They planned on doing this every two hours.

This morning however Ped Neuro Doc came by. He said the chest x-ray is much worse and there isn't any choice but deep suctioning or he'll die. He told me to leave the room and I told him that I worry about the pain from the suctioning for Dear Son-it doesn't matter if the leave the room or not if I know Dear Son is in pain. Despite the fact that we don't agree on this matter, I do have tremendous respect for him and he always does a great job following up on Dear Son, taking time to see us while he's in the hospital and always giving his best in making sure that Dear Son gets the best care he can. Not only is he a good neurologist but he is a good primary doc as well. I am lucky to have such a great advocate for Dear Son.

Dear Son's Dad was scheduled to arrive at noon and was going to stay through Tuesday. I told him he needs to call off work and stay with Dear Son all week since I can't be there for that deep suctioning. We argued a bit about that. I told him he had to stay with Dear Son since I did not want Dear Son to die alone.

Right before I left the room today, I asked the nurse to give me a minute or two to say good-bye to Dear Son. He left the room and I kissed Dear Son and told him I loved him. I told him that I was sorry I had to leave but that I didn't agree with them putting the tube up his nose and that they think it will make him better. I said his Daddy will be here with him. As I turned around I saw the door to our room was left open and the nurse was standing right outside the door. I was really angry. I have sat in that room for three weeks now with tight infection control procedures and the door was never allowed to be open for more than a few seconds to go in/out and here this nurse couldn't have the courtesy to give me a few private moments with my son. Outrageous.


I left the hospital today and was beside myself. I have spent the last eighteen years taking good care of Dear Son and looking out for him. I never dreamed that as things get down to the wire that I couldn't be there. I just can't stomach the fact that he can be hurting. Being your child's best advocate isn't always pretty and it can be uncomfortable at times but you have to do it.



After I left, I called Dad several times to see how things were going. After Ped Neuro's Doc pleas to me for deep suctioning, not once in the last ten hours have they asked about deep suctioning Dear Son.


This has really been a nasty hospitalization. I doubt we will ever come here again should he survive this. The conditions here have also made it challenging. The room is extremely hot at night, freezing in the morning, there is no air circulation and it's noisy. The pressurized bed is loud and blows dust around the room. With the infection control procedures, I am not allowed to go anywhere but the bathroom. So I can't buy any meals in the cafeteria or restaurant nor can I use the microwave or even heat up a cup of water for a cup of tea. It's like being in an airplane for three weeks. If that weren't enough, the public bathroom and shower are about a quarter of a mile down the hall. There are only two public bathrooms on the ICU floor and when you try to take a shower, people knock on the door for you to hurry up. I am not showering very much.

I guess I am also a bit angry. We were scheduled to get the swine flu vaccine and they ran out. Had Dear Son had the vaccine, the Section Chief of Infectious Diseases said he'd most likely be home with a cold and not here. It's really hard when I worked so hard to get him that vaccine (I was able to get the seasonal and pneumonia vaccine though.) and then to have this type of hospitalization. Missing the Make a Wish trip just bothers me to no end-I so wanted to see him happy. We went from planning the best birthday ever to him having the worst birthday ever and being on a ventilator. You wonder sometimes in the big scheme of things, why the hospitalization couldn't have happened after the trip. This is our 60th hospitalization. People have fun every day and you wonder sometimes why it couldn't happen for Dear Son.


In addition, my sister's birthday is tomorrow. She died from colon cancer on March 1st of this year. My mother had colon cancer and was cancer free for six years and now they think it's back. My aunt died from her second bout of colon cancer two years ago. As a result, my mother's physician wants all of us siblings to go for genetic testing. I told my mother that I wasn't interested since I have enough on my plate right now.

At this point, I just want to bring my son home. If there is nothing more they can do, then I'd like to take him home and love and care for him until it's time.

In summary, Dear Son has been in the ICU at Big Academic Medical Center for over three weeks now. He suffered from the Swine Flu and a viral pneumonia. He lungs have collapsed (addelectisis) from the pneumonia and they are doing chest pt, nebulizer treatments and vest therapy to help clear the airways. Yesterday they switched him from the non-rebreather (12 liters of oxygen) to the high humidity face mask to see if that would help.

Thank you for your continued prayers for Dear Son.

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

Dear Son Medical Update #7

Since my last post, Dear Son has fluctuated quite a bit. After the vent tubing was removed, he had repeated issues with desaturations while on the high flow nasal cannula. On Tuesday afternoon, he crashed again and desated around 80 or so (you should be around 95-100). At that point, they removed the nasal cannula and put on the non-rebreather (sp) at 12 liters of oxygen. In addition, they increased the pulmonary toileting, as it's called, to every two hours. Essentially, they do the therapy vest, the cough assist, chest pt and the nebulizer treatments to help open up his airway and lungs. He crashed again at 4 a.m. today but was stable after that.

I spoke with the Attending Physician this afternoon and it appears that we will probably be in the ICU another week or so. Dear Son needs to come off of the non-rebreather before they will transfer him to another floor.

They are working on decreasing the pain medication that he was on while on the ventilator. Because it's a controlled substance, they need to wean him off the medication slowly.

Dear Son has also been losing a lot of weight. He lost 22 pounds in two weeks. The swelling has been eliminated with the Lasix so I asked if he still needed it. They discontinued it today.

He started feeding yesterday. He is on continuous g-tube feedings at 25 ccs an hour, which isn't very much.

The good news is that he opened his eyes today. I think today was the first time that I felt good about this admission. I actually felt he wasn't going to die and would recover. While the doctors thought he could recover, I can't say I was really convinced in light of the issues he had this week. I had been a little jumpy all week worrying they might have to re-vent him. I honestly don't think I could have made it through that.

On Tuesday, I contacted the Director of Nursing regarding the sores behind his knees and the other issues. She checked out the wounds and had wound care do an evaluation of his issues. She'll follow up with me later this week. I think we are moving in the right direction.

So in summary, Dear Son has been in the Pediatric ICU at Big Academic Medical Center since November 1st with the swine flu and a viral pneumonia. The swine flu has run it's course and Infectious Diseases has completed their course and now we are simply treating the viral pneumonia. At the present time, they are:

• Weaning him off of the pain medication.
• Continuing pulmonary toileting to clear his airways and lungs.
• Treating the wounds.
• Continuing g-tube feeds very slowly.
• Continuing the non-rebreather at 12 liters of oxygen.

Overall, this has been a pretty rough hospitalization for him and for me. I was so terribly sick the first two weeks he was there and now am feeling a bit better. I was also terribly depressed thinking he was going to die and that I wasn't going to see his eyes and smile again. I worry that with all of the pneumonias he has had, that one of these times, he won't make it. The good news is that I have really good doctors taking care of him. Ped Neuro Doc in particular has really done a nice job and is always really optimistic. It really helps when we are here that he takes the time to see Dear Son even when we don't have a seizure issue. It makes a big difference during times like this.

I probably won't post again until Sunday but do appreciate all of your thoughts and prayers. I just came home tonight for two hours to pick up some things and then I need to get back to the hospital by midnight to give him his seizure medications.

Swine Flu Medical Update #6

Dear Son is still in the Pediatric Intensive Care Unit at Big Academic Medical Center. Since I last posted on Thursday, a lot has happened.

11/12/09 Thursday~On Thursday, his chest x-ray looked the best since he's been in. They were able to lower the PEEP settings on the vent from 7 to 6 and they did a two hour C-Pap trial where they switch the ventilator to the C-Pap mode which means that it has no rate (Dear Son has to breathe on his own instead of the vent supplying the breaths) but it does have a PEEP. The PEEP setting helps Dear Son since it pushes air into his lungs and essentially keeps the air pockets open (instead of collapsing) when he exhales. He does o.k. on the trial but they decide to hold off doing another trial until Friday.

He has not been on any feeds since admission on November 1st. On Thursday, they did a partial trial of up to 25 ccs an hour which was successful so they decide to resume full feeds at his pre-admission rate. I am a bit surprised at resuming them so fast and ask if that's appropriate. Last year he had his motility rate tested and while his motility rate is normal, it's clearly slower when he's sick. We know that from several previous admissions and the last admission it took four weeks to get him back to his previous feeding schedule. I ask if I can at least go slower and they let me. I reduce his feeds by a half of a can to four cans of formula plus his normal water. That's still a lot considering he's sick and hasn't eaten in two weeks. However their concern is that he needs to be as strong as he can if they are going to try to extubate him and the increased feeds should resolve his blood work issues.

In addition to his respiratory issues, I am annoyed and concerned with wounds or sores he is getting here. They put elastic type support stockings on Dear Son's legs right after admission and then these pressure cuffs over them. They were too tight. They never took them off or changed them and now he has large sores that span the entire back of his knees. He has a sore on his penis from the catheter/foley, his genitals are red (you get that when they don't clean you properly) and he has some pressure sores on his right ear. He didn't have any of these when he came in. I have addressed this with the nurses, the fellow and the attending physician however no one seems concerned. I will end up addressing this issue for three consecutive days as well as asking the attending to specify the number of times/day that he needs these items treated.

On Saturday, I had an ICU nurse that had worked there twenty years. I showed her the wounds when I asked her to treat them and she told me that it never should have happened. She asked that I report it to the ICU Nurse Manager. Finally, as of yesterday, they were beginning to treat these items on a regular basis. I told the attending that he didn't have any wounds when he came in and I don't want to treat any wounds when he goes home. It is a lot of work treating this and when the patient gets wounds, it's really an indication of a lack of good care. When I care for Dear Son, I don't have any issues like that. The most he's ever had was a sore on his right ear where his ear bends when he lies his head on the pillow.

11/13/09, Friday~Things got off to a good start on Friday and went straight downhill after that. During rounds they talked about his plan. His chest x-ray was worse and it looked like an addelectisis (sp) on the right lung versus a true lung collapse. As a result, they won't do the Bi-Pap when he comes off the vent. Their original plan was to get him off the vent and then have him on the Bi-Pap until he could breathe on his own. They agree to try to lower the ventilator settings to give him a shot at extubation. They state that they need to extubate soon or the chance of getting a bacterial infection from the plastic increase tremendously. The Attending Doctor states there will never be a perfect time to extubate however they want to give him an 80/20 chance versus a 50/50 chance and the C-Pap trial will be a good indicator of that. I really like this Attending ICU Doc and Dear Son had her in the past as well as during our last ICU hospitalization in May. I have total confidence in her so it's great to have somebody there that I know.

In preparing for extubation, they decrease the Fentanyl, his pain medication, and decide to use Morphine instead. The goal is to start getting him to wake up. As you are aware, he's been unconscious since admission.

Personally, I can't wait to get this vent tubing out. The ventilator makes it extremely challenging to move and care for Dear Son. They gave Dear Son this air mattress type bed to prevent bed sores however this bed overinflates the lower half of the bed and makes the upper part of the bed lower than the bottom part, which isn't what we want. Because of the mattress, turning Dear Son over is a lot harder since you can't get the bed flat. Yes, you can put the bed in a flat position but since it's a fancy bed and no one can figure out how to deflate the bed for rolling him over, it's pretty tough. I am typically the strongest one there so I choose to turn his hips and let the staff manage Dear Son's vent tubing and upper part of his body. I appreciate the fact that they use the mattress to decrease the odds of pressure wounds but wish they had a manual or staff that knew how to deflate the bed for changing. I've deflated the lower part myself for changing however it still never lies flat.

The nurse today (Friday) is concerned about getting behind. He doesn't like the fact that I have the rate of the feeding pump lowered to 200 ccs an hour (a little less than a cup an hour) and keeps pressuring me to increase it. Dear Son throws up twice in the morning, has a seizure during chest PT but other than that, the 5 hour C-Pap trial is considered a success. In light of that, I agree to increase his feeding rate to 300 ccs an hour, his pre-admission rate. He has lunch at this rate and I get ready to give his seizure meds and start the dinner feeds.

Around 5 p.m. or so, Dear Son has a bowel movement and needs changing. The nurse and I begin to change Dear Son when he starts vomiting a lot. As he begins to vomit on the ventilator, I ask for the doctor to be paged. I tell the nurse I can't understand why he is suddenly vomiting and he tells me that Dear Son is sick and he'll vomit. I said no, he hasn't vomited since admission and this doesn't seem right. The nurse however wants to continue cleaning the bowel movement up and I tell him that we are not doing anything while Dear Son is vomiting. I explain that we need to let him finish vomiting before we can finish changing him. He disagrees. I tell him that we will clean him up as soon as he stops vomiting and calms down. I am not sure how much more we can do. I think it's unreasonable to try to change someone when they are vomiting. He leaves the room and Dear Son finally stops vomiting. I let him rest and wait for the Attending Doc to arrive.

The larger issue is that Dear Son has begun to wake up from the decreased pain medication and he's feeling the vent tubing, which can be uncomfortable. As a result, he's choking on it. In the past, Dear Son has tried to pull the vent tubing out when he begins to wake up so I am concerned that without additional pain medication, he will continue to vomit and choke and we'll have an ever bigger issue with aspiration. In addition, I worry that the increased stress of him wanting the tube out plus more vomiting, will weaken him make extubation riskier and decreasing his success rate. I decide to ask her if we can extubate now instead of tomorrow. I know this probably won't be a popular decision on a Friday night but I feel that if we wait until tomorrow, it won't work. I also know at this time, that it's really possible that Dear Son won't make it. I tell myself that regardless of whatever happens, I am going to be comfortable with it since I have done everything I can to help Dear Son and believe in my heart that this is the right time.

The Attending Doc arrives and I explain that I am concerned with the vomiting. I said he hadn't vomited at all since admission and now that the flu portion should be almost over (flu lasts 7-10 days), I don't know why he is vomiting. She asks to see the vomit to see what it looks like. I am concerned about aspiration and ask if he can still aspirate over the vent and she says yes. I ask her if we could extubate and explain that Dear Son doesn't like the tubing and we either keep him sedated so he doesn't feel it or extubate sooner. I tell her I think he'll be weaker tomorrow if he continues fighting this and vomiting. She agrees on the spot without hesitation and calls in staff to help us.

At this point, she's concerned about aspiration as well so she's going to extubate with him on his side. We have to finish cleaning him up so we all work together to turn him over. We have about six people working on this now since turning him over is no easy task. When we turn him over we have to pull him back away from the edge of the bed so we don't hit the vent tubing on the bed and dislodge it. We had cleaned up half of the bowel movement and as we turn him over to finish it up, they have trouble with the vent tubing and suddenly Dear Son is in major distress. If that weren't enough, as we turn him, the stool beneath him has pooled on the bed and I can't lean over to grab his hips without leaning into the stool. As we try to clean it up faster, Dear Son begins choking on the tubing and vomiting some more. The backs of his knees that were treated with Bacitracin earlier now make his legs so slick that turning him is a total disaster. If that weren't enough, the pressurized bed is lumpy and turning is almost impossible. We try to center him in the middle of the bed but there is vomit on his shoulders now and he's slick. As the vent alarms start going off, everyone is beginning to panic when suddenly they discover that the radial arterial line has become dislodged and there's now blood everywhere. The Attending Doc yells out that we have to close the hole or he can hemorrage to death. Within three minutes, we went from a disaster to total chaos! It takes several minutes before they get everything secured and we can get Dear Son turned over and cleaned up. I then leave the room so they can begin extubation.

By this time, I am quite nervous and concerned. We had just been though a pretty chaotic situation and it's hard not to be converned. I am pacing the hallways and praying for him but I am basically a nervous wreck. By this time my back had really started to hurt so I decide to sit down near the elevators to pray for Dear Son. I close my eyes and can't seem to concentrate even well enough to pray for him. I felt I should be helping him so I decide to visualize myself with my hands on his shoulders, caressing him, telling him it will be o.k. and holding him in place for the doctors while they extubate him. Suddenly, I visualize several white angels all holding him on his side, with me holding his shoulders while they extubate him. As I visualize us holding him, suddenly, a total calmness comes over me and I felt as if at that point, it was done and it was successful. I don't know that for sure but it was the most unusual sense of calm I have ever felt. After what seemed like forever, I returned to the room.

Extubation has gone well Dear Son is now breathing on his own. They have him on a high flow nasal cannula at 8 liters of oxygen. He looks pretty good but he's in a lot of pain. The Attending Doc says she'll write the orders for some pain medication otherwise he'll crash in four hours from withdrawal (With certain drugs you can't just take the patient off of the medication cold turkey.). Dear Son is now breathing with the nasal cannula but is in a lot of pain. The nurse has to wait for the orders to be written and the Attending Doc is now with another patient.

In the interim, they give me the o.k. to deliver his seizure meds, which are now very, very late. At this point, I am hoping that he got them in enough time and that he won't have any seizures. As I wait for the pain medication to arrive, I kiss Dear Son for the first time and hold his hands. With the Swine Flu hysteria here and as sick as I had been, I didn't want to kiss him for fear of making anything worse.

About an hour or so later, the Attending Doc opens the door. She tells me that I did a great job advocating for Dear Son and that this was 100% the right decision and right time to extubate him.

Around this time, the night shift arrives. Our night nurse knocks on the door, points to himself and then to me, and gives me the thumbs up. He'll be Dear Son's nurse tonight and we've had him before in the ICU. He's really nice and took good care of Dear Son before so I know it's going to be a great night.

Dear Son continues to cry out until he gets the pain medication. Once that's in him, he really starts to look good. He's calm, the oxygen saturations are good and it appears to have been successful. The next 24-48 hours are critical though. If his saturations don't stay up, they may have to re-intubate him.

By 10 p.m. his oxygen saturations are really stable. I go to bed around midnight and sleep the best I've slept in the past two weeks. Dear Son does fairly well all night and by morning, they have weaned the oxygen to 5.5 liters.

11/14/09, Saturday~After the shift change, they decrease the oxygen to 4.5 liters. They tell me I can start feeds again at whatever rate I feel comfortable. I decide to give him only enough formula with seizure meds and no more until he's really stable from a respiratory standpoint.

As the morning goes on, Dear Son begins to look poor. The nurse thinks he sounds worse and talks to the doctor. They order a chest x-ray and the chest x-ray comes back terrible. The lungs have filled up with fluid since the extubation and now look the worst since admission. Without the PEEP setting on the vent pushing the air into his lungs, the right lung has totally collapsed. Actually, they think it looks more like an atelectasis than a true lung collapse which explains why the PEEP setting helped as much as it did. They end up having to increase his oxygen and eventually bring up back up to ten liters. Saturday evening he has another seizure and they give him Ativan. They order chest pt and nebulizer treatments every two hours.

11/15/09, Sunday~ Dear Son beings yelling out at 2:30 a.m. with a seizure. I use the VNS but it doesn't stop the seizure. I worry that the seizures may tire him out and also that they may escalate. We really need to keep Dear Son calm so he can focus on breathing. They give him Ativan and we are able to stop the seizure.

The chest x-ray looks much improved with the increased chest pt and nebulizer treatments.

As the day progresses, he begins to have more pain and is unable to keep his oxygen saturations up. He continues to desat to 87% on his right side where he has the lung collapse. If we can't keep his oxygen saturation up, they may have to re-intubate him and put him back on the ventilator. He has multiple desaturations throughout the day so things have not really stabalized.

At this point, we have to continue the chest pt and nebulizer treatments and hope he gets stronger. I am going to speak with Dear Son's Ped Neuro Doc (He functions as his primary.) on Monday to get some direction on the feeding schedule. I wasn't comfortable increasing the feeds with his respiratory being stable. In addition, Dear Son normally feeds while lying on his right side, so the food goes out of his stomach. Now that the right lung is collapsed, he can't lie on that side which means he'd have to feed on his left side. Dear Son has a feeding tube but not a Nissen which means he doesn't have anything to stop the flow of his formula from refluxing. Looking back, I am almost certain that the vomiting on Friday was due to the increased rate of his feeds, the fact he was on his left side and the slower motility. The vomiting occurred at around 5 p.m. Friday, when he was positioned on his left side. The vomit was mostly formula and since lunch was started around 11:30 a.m. and was still in his stomach at 5 p.m. I am guessing that I am probably right. So in light of the reflux issue, a slower motility and his respiration not being stable, I really want concrete direction on his feeds from Ped Neuro Doc. He's really good with that and when he created his schedule in May, it took weeks to get Dear Son back to his previous feeding level and it worked beautifully.

So in summary, Dear Son remains in the Pediatric Intensive Care Unit at Big Academic Medical Center with a diagnosis of Swine Flu and viral pneumonia. He is off the ventilator but is still not quite stable. He has started to regain consciousness and has opened one eye for me twice. His right eye remains swollen shut. They expect that as they continue the lasix, the swelling will decrease and his eye will open.

I will try to give you another update on Tuesday. Thank you for all of your comments and well wishes for Dear Son's birthday. A special thank you to Angela for the beautiful birthday flowers for Dear Son.