Dear Son has continued to cry the majority of the time. Last Sunday, he cried for nearly twelve hours straight. As the week went on, his irritability increased and the crying episodes were nearly non-stop. He cried through Christmas Eve as well as during the night. The most sleep I got that night was a 30 minute segment and the rest of the time I was up with him. He cried all day Christmas Day as well. What is most problematic with the crying is that nothing seems to help. I re-position him, use his VNS when it seems like he's having a seizure, rub his back, hug him, sing to him and yet nothing works. Finally, I paged Ped Neuro Doc yesterday. He thinks the crying is due to the disease progression and prescribed some Resperidone to help with the irritability. He said to give it at bedtime since that's when it seems like it's the worse. I had also asked about the possibility of getting the MRI done simply to rule it out but mostly because this crying is so excessive and I am getting very tired.

Well, Dear Son was crying all the time so after I picked up the prescription, I gave it to him around 2:30 or so yesterday. Soon, the crying stopped and Dear Son was able to get some sleep. I gave it again around 1:30 a.m. when he started crying again and it decreased the crying episodes about 70% during the night. When I finally got him up for the day, he looked a bit better. I was able to try on his new pants and take a picture. You can see he even looks a little better here!The only problem however is that within hours of starting the prescription, his secretions increased a lot. I kept his hospital bed raised up and watched him carefully last night. Dear Son wears a Scopolamine patch since he can't swallow and the increased secretions are making it challenging. The secretions seemed a bit worse today so I checked on-line and one of the side effects is increased drooling and a risk of aspiration. Since Dear Son has a problem clearing his airways, I have to be careful that he doesn't get sick or have these secretions.

Since it's Sunday and I didn't want to call the doc, I decided to call the pharmacist. I explained the situation to see if I needed to follow up with the doc today or if it could wait until tomorrow. I really know the answer to that question however I hate bugging people on the weekends. He suggested I speak with the doctor. I paged the Ped Neuro on call and explained the situation. First he said it was o.k. then I think he checked the side effects and told me that it wasn't o.k. He suggested that I stop the Risperadone and check with Ped Neuro Doc in the morning. I think that was a good call.

In the interim, I changed the Scopolamine patch today to help him out. The patch wasn't scheduled to be changed until tomorrow however I am concerned about these secretions. In addition, the pharmacy shorted me five days of the Methadone (as you may recall, Dear Son had some Methadone withdrawal from the ICU glitch) so he won't get any of that today and I'll ask Ped Neuro Doc if that is an issue tomorrow.

In the meantime, he's still fussing and crying on and off. Hopefully, we can get through today and tonight without any aspirations or emergencies. I have to work tomorrow so I hope to get this resolved in the morning.

Tablescape Thursday~Gilded Christmas Tablescape

Welcome to Tablescape Thursday hosted by our lovely hostess Susan, at her blog, "Between Naps on the Porch." This week, I created a "Gilded Christmas Tablescape".

This week, I chose my favorite china, Mikasa French Embassy Red to be the star of my table. As you may recall, I chose this fine bone china some twenty three years ago when I first got married. While other brides were choosing white with silver or platinum edging, I knew when I saw this pattern that this was it. I knew that I would never get tired of red and gold for Christmas. Let's take a look around.

I paired my china with a white tablecloth as a base and then added a sheer embroidered gold topper. I made the matching napkins myself.
I chose the stemware for it's simple elegance. I love the swirl on the stem and love the gold edging at the top. The pattern is Lenox Monroe.

I embellished the napkins with these little gold cherubs. My Christmas tree consists of a musical theme with rich cranberry ribbons with gold music printed on them. The ornaments are some variation of crystal and gold. I have gold cherubs playing musical instruments, gilded mirrors on the tree, some blown glass ornaments as well as various crystal ornaments and some more music themed ornaments. I think the pattern looks very regal here.

I think this tablescape could almost pass for a state dinner. If it did, I am sure they would be serving something like this:

• Mary Randolph's Golden Onion Soup
• Sage-Roasted Goose with Bourbon Gravy
• Braised Red Cabbage
• Apple-Cranberry Compote
• Caraway Buttermilk Biscuits
• Twelfth Night Cake
  

This menu was created by Colonial Homes Magazine (now defunct) many years ago. It was based on recipes that were inspired by the 1824 cookbook, "The Virginia Housewife" by Mrs. Mary Randolph. She was related to both George Washington and Thomas Jefferson. Her Golden Onion Soup looks amazing. During the holidays, I absolutely love making recipes that have been in the family for generations. I think it's important to document those recipes so they live on. For many years, I took holiday meals for granted. It wasn't until a few years back when Dear Son was hospitalized over Christmas that I realized what a gift it is to spend time with our families sharing a meal. I love this photo of the table.

One of my favorite Christmas photos of Dear Son. What a cute little boy he was! He was trying to pull the lights off of the Christmas tree. He never had much use of his hands so it was always a good thing when something interested him enough to try to use them. I can't tell you how many years I had trees with the bottom lights pulled off.

I got the centerpiece years ago. I love the flame at night through the crackled glass. It's very romantic and I am all about romance. I also love very elegant, over the top rooms.

A view of the Christmas tree before dinner. This year I embellished the tree with white roses as well. The room is really quite glamorous when you are sitting looking at the tree.

A little crystal Christmas tree dish.

Lots of votive candles and tealights in cut crystal tealight holders. They really sparkle with all of the candlelight. I love how the red and gold pop in these photos.

The crystal sconces, the gilded mirror and the cranberry embellished wreath.

The gilded mirror, my absolute favorite possession. Over dinner, I will tell you the story behind the mirror. Some day, I will have a proper place for it. It will be over the fireplace, in a really tall room, filled with crown molding, a large gilded, crystal chandelier and other Louis XV antique furniture, which I absolutely adore.

Another view of the tablescape.

One last shot of my gilded, antique, Louis XV mirror.

I hope you enjoyed my Christmas tablescape. You can view more tablescapes here. It's been a pleasure being part of such a lovely group.

Merry Christmas!

Tired

It's 4:20 a.m. and I've been up with Dear Son on and off since 12:30 a.m. It's been a long night. He's been crying out and fussing all night long, sometimes while asleep and sometimes awake. I've tried just about everything I can think of. At 3:30 a.m. I got him out of bed and into the recliner. Not sure if it helped at all, but you'll try anything at this time of the night. It's a little frustrating nonetheless. I don't think the medicine changes are working very well. This has been going on for several weeks. I hope it improves soon. Hopefully, he'll fall asleep before morning. I for one am exhausted.

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.

Tablescape Thursday~White Christmas Tablescape

The inspiration for this week's tablescape came from these sugared fruit ornaments that I purchased many years ago. Years ago, when I had my home, I used to put up Christmas trees in every room. Each room had a theme and a color. Of course, the lime green color is one of my favorite colors. I love how it pops with all the white, hence this week's title: White Christmas Tablescape.
The metal tree in the center of the table, I purchased at a second hand store. I took it apart and painted it with a metallic flat paint, knowing that I would use it for a tablescape. I think it turned out beautiful.

The ornaments are lime green and gold and repeat the gold of the rim on the Lenox crystal water goblets. Bone china is Spode Mansard. The tea light holders are crystal.


A view of the place setting.



A closer look at the Christmas tree.


A pretty view in the mirror of the Christmas tree. I love the Louis XV gilded mirror with the gold/green ornaments.

For the chairs, I draped white netting around them and tied them in the back.

I clipped an ornament on the back and tied it with a lime green and white plaid chiffon ribbon.

A view of the entire tablescape.

Another pretty shot.

A close up of the ornaments.

A lovely view of the Christmas tree.

I hope you enjoyed this week's tablescape. Please visit Susan's blog at, "Between Naps on the Porch" for more tablescapes.

Thoughts on Death and Dying

I remember leaving the hospital room, hoping that Dear Son wouldn’t die. I was leaving because they needed to do the suctioning to save his life. Dad would have to be here for that, because I failed to allow them to do it, after they bloodied up his nose. I told Dad he would have to be there indefinitely, until that was over, so Dear Son wouldn’t die alone.

It bothered me to think, that Dear Son might die when I wasn’t there. After eighteen years, and being with him on every hospital visit, it was hard to think I wouldn’t be there at the end. I had loved him and cared for him deeply his entire life. I had always assumed I would be there at the end. I had never thought for a moment, that I wouldn’t be there to say good-bye. It had never even entered my head. And yet, that night, it was a real possibility. It took everything I had to leave. I had never felt such pain.

I must say I was almost angry at that thought, although angry isn’t really the right word. I think it was just plain unimaginable that his life would end any other way than with me by his side. It was like watching a really good movie and then suddenly, it had a crappy ending. It was the kind where you would ask yourself why they put all of the time and energy into the movie only to have it end so poorly.

I remembered earlier in the hospitalization when he was on the vent. He was lying in the hospital bed, unconscious, tubing taped to his mouth. For the first time, I thought about it not working out. I mean, it almost didn’t work out in 2006, when he nearly died on Mother’s Day. He was on the vent then and without a blood transfusion, that would have been it. But this time, wow, I thought about what might happen if he died.

Dad was there back then, in 2006, when they removed the vent tubing. He said it was really hard to watch. The doctors and staff all stood around Dear Son as they removed the tubing, then they basically stood back and waited for him to gasp for his breath, hoping he’d breathe again. He said he never wanted to watch that again. I left the room for that kind of stuff. I know I can’t watch that.

But this time in the ICU, that night he was on the vent, I thought about that moment. I thought, what if it didn’t work out? What if I didn’t get to say good-bye? What if Dear Son suffered? What if he looked around for his Mommy and she wasn’t there? What good would it have been if I had done everything else in his life if I wasn’t there at the end when he needed me the most? The guilt of leaving the hospital that night was going to kill me and yet, I knew if that if suctioning was required or he would die, then I would have to leave.

I remember asking the nurse for a few minutes to tell Dear Son good-bye. He couldn’t even close the door and give me a few minutes of privacy. I’ll never forget that. His name was Richard. So much for compassion. I’ll also remember the look in Dear Son’s eyes, when I told him I couldn’t stay. I told him I couldn’t stay when they wanted to put that tube up his nose, because I can’t watch him in pain. I told him his Daddy would be with him and that I was sorry. I told him that they thought that would help him. I told him I loved him then kissed him on his cheek. I’ll never forget the look on his face when I told him that. As sick as he was, suddenly his eyes opened wide, as if someone had just tossed cold water on his face and he was suddenly awake. He had this terrified look on his face. I knew he didn’t want me to leave. But I had to. I felt terrible.

Fortunately, he recovered, or rather, is still recovering. That night though, leaving for the suctioning, made me think about the ending. It was all I could think about as I drove home. Coming home to an empty apartment, and seeing his empty bed, made me think about what it would be like if things didn’t work out. It was awfully quiet.

If there were two things that I knew for sure, up to this point, was that I would never do a “Do Not Resusitate” order and I would never do a trach. The first one, because I would feel like a traitor to Dear Son. Granted, I am pro-life but aside from that, I could never do that order because I would feel like it would be a lie. I mean, how could I possibly do everything I can for him his entire life and then choose at the end, not to do everything to save him. I couldn’t fathom that. And yes, I know that some people don’t view it that way but this is my son. I am speaking only for myself.

As for the trach, well, I’d never do that to him. I mean, here is a young man who lived his entire life wanting to run and do things like other boys. He lived his entire life as an active boy stuck in a disabled boy’s body. To cut a hole in his throat, I think, would send him over the edge. It would totally break his spirit. I don’t think he could handle that. I also think it’s an easy answer sometimes for physicians to remove body parts; it’s a whole different ballgame to live with it. I learned that with the g-tube. It took me two years to get over the fact that he could never eat again. I still despise that thing.

The night in the ICU when he lie on the vent, challenged that belief for the first time. I thought about what might happen if it didn’t work out. What if they removed the vent, with the doctors and everyone standing around, and he gasped, suffered and then died. How could I help him? And when would I get to say good-bye? He’d be dead by then and they’d leave the room and take him away. And even if they let me talk to him, he’d be dead. There wouldn’t have been any mother there helping him at the end, holding his hand, kissing his cheek or looking in his eyes telling him I loved him. And how many times would I replay that ending over the rest of my life?

But would this be for me or for him? How important is it to say good-bye?

I thought about Dear Son a lot that night and when I went home. I also thought about it some more after we got out of the hospital. When things weren’t going well at home, and I thought death was imminent, I thought, well, if I call 911 or go to the hospital, we may have to do this again. Am I ready to vent him again even though he was just vented ten days ago? If so, how many times in his life am I willing to do that? Will I vent him and make him go through every life saving effort until I’ve got every last drop of life out of him? What is the right answer?

I pulled away and tried to take myself out of the equation. I tried to look at what would be best for Dear Son. It was hard though, knowing what would be best for him. In the end, I am just a mother who loves her son. I don’t want to have to make these decisions. I can’t ever sign that “Do Not Resusitate” but how many times am I willing to vent him?

I know for myself, that I never want to be vented. Not once, not ever. I may not even have trouble signing a DNR for myself, since I don’t ever want to step foot in a hospital again after all of these years. But I don’t like being in the position to have to make these decisions for someone else. And especially not for my Dear Son.

As I thought about this issue some more, I realized that what I wanted was peace. I wanted the ending to be peaceful and loving. I want to be able to say good-bye. I want to look in his eyes, tell him I love him, tell him what a wonderful kid he was and support him in his death. I wanted to hold him, to keep him from suffering. I wanted death to be loving, as was his life. I decided then to think about what would be the ideal for him and ideal for me.

In the end, I thought that the ideal situation was for him to die at home with me, holding his hand, looking in his eyes and telling him I love him. Then I thought about the next best, to have him die in his sleep. In any case, I’d want him to die without any pain or suffering.

I also thought about the worst case scenarios. That he would die alone in the hospital with no one there. Or that he might choke on his vomit and die or die gasping for air as they removed the tube, looking right at me for him to help him. Pretty much, all of the worst case scenarios involved pain and suffering and me not there to help him.

Essentially, I would want his death to be a reflection of his life-that he would know all of the love that I had for him and that other people had for him. Isn’t that what we all want at the end, to know that we are loved, to not die in pain and to have people we love around us?

I haven’t made any decisions yet, but just thinking about what would be an ideal death versus signing a “Do Not Resusitate” helped. Shortly thereafter, I had to take him back to the emergency room, just three days after we were discharged. When I got there, they asked me all of the questions again: “Did I want to save him at all costs? Did I understand that meant venting him if needed, etc.?” I said "yes" to all of those questions once again. It was too soon though to have him back at the hospital. I wondered how many times they were going to ask me that again. I mean, how do you know when to save him and when it is too much for him?

I found myself longing for the days past, when people just died instead of having to agonize over these decisions. I am just a regular mother who loves her child. I don’t ever want to make any of these decisions. I just want my son to live, to be happy and feel loved. And that smile, yes, I want to see that smile. I want to see it again and again and again.

Note: Dear Son is eighteen years old and suffers from a progressive neurological disorder; he has intractable seizures, dystonia and is severely retarded due to a random mutation of the ARX gene.

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.

Tablescape Thursday~Sugar Maple Tablescape

It certainly has been a long time since I've posted a tablescape. My camera broke and I purchased a new one for my son's Make a Wish Trip. I created this tablescape on November 1st and little did I know it would be the last one I'd make for a while. As most of your are aware, my Dear Son got the swine flu and a viral pneumonia just one week before his Make a Wish trip to celebrate his 18th birthday at Disney World in Florida. Instead, he was on a ventilator. After 25 days in the ICU, we came home on Thanksgiving Day. We have a lot to be thankful for. I created this tablescape on November 1st. I call it my "Sugar Maple" tablescape after my favorite fall tree, the sugar maple. I love the bright orange leaves on the tree. The roses remind me of that tree.

I started this tablescape with a white tablecloth and then a tulle overlay. Two of the place settings have mirrored silver chargers and two have none. I wanted to break the tablescape up a bit and chose to alternate the chargers.

The place settings include my white Spode Mansard place settings. I uses white cotton napkins tied with a white satin and sheer chiffon ribbon. I added some fall berries for color.

I especially love this photograph. I love the crystal and the candles. I am able to add frames to the photos with my new camera although I did not get a chance to add them all.

More tablescape photos.

I used a combination of votive candles along with tealight candles in crystal candleholders. I inverted some hobnail juice glasses to add some height to some of the tealights and to showcase the hobnail glasses. I think those are beautiful.

I just love the look of a tablescape with candles. It's always so romantic. I love how a beautiful tablescape instantly relaxes you when you walk in the room. I think it promotes a different conversation with someone than when a table isn't decorated.

Notice the crystal decanter. I just love the shape and the etched glass.

A close up of the tablecloth. It doesn't take much to tie the sides however it really sets the mood.

Another close up.

A view of the entire table.

A better view of the decanter.

A close up of the inverted hobnail juice glass and the crystal tealight candleholder.

I hope you enjoyed my fall tablescape. I have some Christmas ones planned beginning next week. Please stop by Susan's blog, "Between Naps on the Porch" for other lovely tablescapes.