Personalizing Your Trash Can

Sometimes, moving in can be overwhelming. It seems like there are a million things to do, one of which was to get a trash can. In our city, while we can purchase them at a big box store, it's a better deal to purchase them from the city. Of course, I chose the largest trash can they offered.  And I've been filling it every week!  

Here is the trash can "before" the new numbers.

 I wanted to put my address on it but it needed to look pretty.  When I was growing up, we had aluminum trash cans with lids on them. Back then, if someone put their address on them, they spray painted it in very large numbers on the can, often with black spray paint. The numbers were so large that they took up nearly all of the space on the can. I think this is because the "Dads" were in charge of the trash cans back then.  They'd spray paint those numbers on the can and it didn't really matter how it looked, as long as it was functional. Fast forward to 2013...I think I can not only put my address on it to make it functional, but it should be beautiful as well.

I went online to view some the fonts however I really liked this font. I thought it would look both pretty and artsy at the same time.  Originally, I was going to put it on the front of the can, however I think it looks much better on the side. I ordered the numbers from Wall Words, then followed the instructions.  I leveled the numbers and centered them on the can.  I peeled the backing off and then used the plastic card to smooth out the air bubbles.

And here is the "after".  I really liked the way it turned out. I like the size of the numbers and it is now both pretty and functional.

 Do you put your address on your garbage can?

 In other news, Matthew has been doing a little better this week.  He was having a lot of choking issues over these past few months. With his progressive disease, he's not able to swallow his own secretions so he chokes on them unless I suction them out. It's a lot of work sometimes. He was also having more seizures. We went to the neurologist last week and he adjusted his vagus nerve stimulator and he's been doing much better. The seizures decreased and he is not choking so much. My best guess is that the seizures caused the excess saliva and then he'd choke on it. 

 I'll have some more projects to share soon. I am waiting for some things to be installed and then we can take a looky loo around the new house and I can show you around.  I just ordered the shower curtain tonight then the bathroom will be done.

Our New House

 I just wanted to share pictures of our new home.  I am sorry this took so long however I needed to take care of some things first.  I started shopping for a new home in February.  Homes started selling really fast and it was difficult to drop everything with Dear Son (Matthew) and run and look at these homes. Many of the foreclosures had multiple bids even in you saw the home within a few hours of the listing. At the start of this process, I knew I wanted a ranch home and not a townhome or a condo or anything else.  I suspected I'd end up with a 50's ranch home.  The problem was that I couldn't get Matthew in the home, meaning the doors weren't wide enough for his wheelchair or the doorway had too many turns. Even when I could get him into a home, there weren't any homes that I saw that I could get his wheelchair into the bedroom. I figured I'd have to redo the doorways to do that.  The market was moving so fast on affordable ranch homes in the area I wanted. I was looking to stay in the same county and had one or two key towns that I was targeting. Both had great school districts and were in good neighborhoods. I bid on three separate homes and lost out on all three. The first home I bid on, had multiple offers before I even bid, one of which had been accepted.  I started working with one real estate person however she wasn't available to show me this home until Monday and I had requested to see it on a Friday.  Of course, they accepted a bid on Saturday so by the time I saw it on Sunday (with a different realtor), they had already accepted a bid. The home was perfect for us. 

Since the homes were moving fast, I began to get creative and started looking at some overpriced homes to determine if I could bid on those. I found a great ranch home down the street from the first home I bid on. It turned out that it had been on the market a while and was in great condition. I bid on the home and with zero competition, I had high hopes they might accept. It was a divorce situation however and the husband and wife had been ordered to liquidate all of their properties (they had four). The wife refused to respond to any and all offers on the house however the husband's attorney had the power of attorney and could sign for the wife. It looked like it would work out. At the last minute, the wife ended up keeping the home since one of her other homes sold, so I was out of luck.

I bid on a third home down the street. I essentially bid on three homes on the same street. I lost out on that home due to a bidding war and I wasn't comfortable increasing my bid. I was getting pretty discouraged at that point mainly since there just weren't any homes available. I had scoured the internet for a home but nothing was happening. I was worried I wouldn't find something before my least expired. While I could have extended my lease, I really didn't want to.

By this time, I was really down. I decided to look at this one townhome in our area because it was right on the walking trail. It had a great location, great landscaping however it needed updating. It was difficult to get Matthew into the home and the only doorway I could get the wheelchair in had a turn that was difficult.  The worse feature was the popcorn ceiling. I wanted to put crown molding in the place however when I researched it some more, most of those popcorn ceilings contained asbestos and since asbestos is a leading cause of lung cancer and since Matthew has respiratory issues and weak lungs, I decided to pass on that one.

Finally, I decided to see this townhome. I had seen it a few months prior however I really wanted a home and not a townhome so I passed on it. This time, it just clicked.  The open floor plan is perfect for Matthew. There is a bedroom off the front door that has double doors making it easy to get his wheelchair in his room. There is plenty of room in the living area for his wheelchair. The townhome was a flip and everything has been redone so it's like buying a brand new place.  This place was only 3 miles from our apartment (we lived on a golf course) and is in a great town. The high school is one of the top high schools in the state and all of the schools (elementary, junior high and high school) are rated 10/10.

Here is a picture of the entrance. Dear Son's (Matthew's) room is off to the right with the double french doors.

Here is the living area-these are the real estate photos with the staging.

 This is the master bedroom.

 My favorite part of the house is the bathroom. It has beautiful travertine tile and a stunning vanity. The pictures don't do it justice. I like to say that our home is functional for Matthew and pretty for me. They also put travertine tile in the laundry room. I think my first words when I saw the house was that, "I'd be over the moon if I got to do laundry in a room with travertine tile." It's just so pretty.

 I like the wood floors. There are bronze accents throughout. They really paid attention to detail and made everything pretty. There are beautiful pull chains in the master bedroom closet. The garage flooring has a special coating and is very pretty. Overall, nearly everything was done beautifully.

 Here is a picture of Matt's room.

I purchased the home on March 1st. The mortgage approval process went really fast.  The loan was ready to close in 3 weeks.  I waited to close until early April due to my current apartment lease. My lease was set to expire at the end of May but I was able to get out of it a month early.  Once the loan closed, I started moving things over to the new house. I moved everything myself and had movers come and move just the furniture. It was a lot on top of caring for Matthew, cooking all of his food from scratch. I felt like I worked 24 hours a day for several months! I was exhausted. The new home has worked out pretty well. Everything was new except for the air conditioner.  All appliances were new and the only one I needed to purchase was a refrigerator. I purchased a used one for now.  Of course since everything was new, that meant I didn't know how to work anything.  My new dryer isn't drying clothes very well so I need to have them come out. My air conditioner isn't cooling very well but other than that, things are going o.k.  I am working on getting Matthew enrolled at this new school system.

I officially moved last Friday and I turned in the apartement keys on Tuesday. I am looking forward to getting some rest soon.  I'll show some pictures once I get things set up. Because it was redone, there weren't any curtain rods, blinds, shelving, etc. I had to put in new blinds plus lots of shelving. I redid the kitchen pantry shelving and replaced the 12 inch shelves with 16 inch shelving. There wasn't any shelving in the linen closet so I had to get that done. Dad installed all of it for me. There is still a lot to be done-towel bars to install, my headboard needs to be attached, Matt's closet needs to be redone and my crystal sconces need to be hung yet.  I want to change the paint as well. Overall, I am very happy. I think it's the perfect home for us and I look forward to many years here.

Moving Soon

 

I've been waiting to share this and it won't be much longer.  I am getting ready to close on our new house in the next two weeks. Everything is done and approved so it's just a matter of seeing if all of the parties can close a little sooner. Once that is done, I'll show you our new place.

The best part about the new place is that it is absolutely perfect for Dear Son. It's an open floor plan with a beautiful bedroom with double french doors off of the living area. The double french doors make it very wheelchair accessible for him. 

I don't want to reveal too much more but I think you'll be surprised.  Originally, I was looking for a 50's ranch with hardwood floors however finding an affordable one was extremely difficult.  In addition, there proved to be many challenges. Most of the 50's ranches had smaller doorways and I couldn't get the wheelchair in the rooms, and often times in the house itself. Many of the bathrooms were too small to get his bathroom wheelchair in (Dad has a smaller, portable wheelchair that he can get Dear Son into the bathroom and then he transfer him to the hydraulic bath chair.). Some of the ranches had a step or two and that made it difficult as well.

We are really excited to move to our new home.  Of course that means lots of new projects that I'll get to share.  I think the best part is that this process couldn't have gone smoother.  It was a very competitive market shopping for the home but once I found the right place, things went very well. Our current space is quite small so it will be great to have more space. I can't wait to put up a Christmas tree this year and to decorate for all of the holidays. I can't wait to plant flowers and so much more.  I'll probably wait to paint until I am in there however. Originally I planned to paint it all ahead of time however I was able to get out of my lease a month early so I need to speed things up a bit. The photo above is a picture of my former home-I sold it some ten years ago but I always loved it. It lived really well. It will be great to have beautiful home again.

 

 

Small Victory! He Can Move His Right Arm!

It's been a long time since I posted, but it's been very busy here.  Perhaps the best news is that Dear Son continues to improve.  As I mentioned previously, his new blenderized diet has improved his dystonia (movement disorder) immensely. For the first time in 21 years, he is able to move his right arm on his own to help put on his t-shirt. I put the arm hole over his arm and he is able to move it slightly to push it through. He is really trying to do this and he's never had any real use of his arms/hands.

 I just took this picture the other day-he needs a shave but overall looks pretty good.

 

As a little boy, he had intense physical, occupational and speech therapy since he was three years old. Shortly thereafter, we had an evaluation at the Rehabilitation Institute of Chicago to determine what was wrong with his arms/hands but the intense thereapy never worked. We had additional outside therapy (outside of school) when he was around ten or so to try to get his arms and legs working better however nothing really worked.  He always used his mouth to operate things like his Barney (chewed on his hand to make him talk) or used his head to butt into an object to let you know he wanted that object or to make it work.

 

When he was in high school, his teacher had a water bottle that she rigged up to help him water the plants. She would place her hand under his forearm and when she felt a muscle move, she would squeeze the bottle (her hand on top of his hand) to help him water the plants. That was the most he could really do. He did enjoy putting his hands in the flour for dog biscuits but overall his arms/hands have never really been functional.

 

When he went to the transition program (it's a day program that they go to from ages 18-22), one of the goals I had was for them to do range of motion exercises for him for his arms and legs to keep them from getting contracted. At that time, he had just come home from the hospital after having the swine flu and he was not able to move his big toe, let alone a foot, a leg or his arms/hands.  I still felt it was important to do that to keep him from getting contracted because at that time, I had great difficulty in trying to get him to straighten his leg. I knew that couldn't be comfortable and I worried it was painful for him as well.

 

Since that time, they have continued to do his exercises however once he started his Now Foods Organic Coconut Oil regime (it's the ONLY brand that works for him) and new blenderized diet made from real food (I took him off of commercial formula via the g tube and  feed him a blenderized diet made from scratch and feed it through his feeding tube), his legs began to move (see ball kicking video where he kicked the ball 10 times) and now he is able to move his arms. The journey has been amazing: The first step was that he began to enjoy his arm exercises. Next, they noticed that he had more trouble moving his left arm than his right, because the dystonia was worse on the left side. Now the aide asks him if he's ready to move his left arm and he give her an eye blink for yes, to let her know when he's ready. Often times, it just takes him a few seconds (10-20 seconds) for him to be able to relax that arm to move it. Then he began to move his arm slightly which I had never seen him do before. And then, in the past two weeks, he started trying to lift his arm up for exercises and trying to move his right arm into his t-shirt.

 

Of the two arms, his right arm works much better/easier than the left. I have him lying on his bed when I get him dressed for school or when I change his diaper. I place the t-shirt over his head and then open up the right arm hole and place it over his hand. As he moves his hand to try to push it through, I pull the t-shirt down over his arm to help, lol.  He's only able to move his arm a few inches but that is a lot of progress in a short amount of time. He now looks forward to it.  I tell him how proud I am of him and I talked to him about how he should be proud of himself too!

 

It took months to get this far.  Just a few months ago, I noticed his dystonia was getting better and that he could move his arms better and I had a catch phrase that I used to reinforce it....I'd say that, "your arms move like but tah!". Positive reinforcement goes a long way with him. Now it's pretty rewarding to see him be able to move his arm in a more functional way.

 

I should also mention that his cognitive ability has improved dramatically as well.  Since December, he was having episodes where he didn't want to kick the ball. The aide, who works with him every day, mentioned it to his teacher and they decided to call in the physical therapist to take a look. He was having seizures at that time, so they rescheduled it. Anyway, the physical therapist came to evaluate him. The aide was explaining to her that he hasn't wanted to do his leg exercises and she wanted to know if there was something wrong with his legs or if it was just a matter that he didn't want to do them. Well, as she was explaining it to the therapist, he got a big smile on his face and started kicking his left leg and then kicked his right leg  to let them know that "could" move it but that he didn't want to.  The aide joked that he was showing off and that when it came time to do his exercises, that he wouldn't do them for her. Sure enough, when the therapist left and it came time to do them, he didn't want to do them. He just laughed when she teased him that he didn't want to do it. It was great knowing that he is able to make choices and he totally understood what they were saying. Everyone got a good laugh over that.  I did have a conversation with him about the importance of doing his exercises since exercise and moving his body is important with his progressive disease.

 

I think the best part is that it just goes to show that you are never to old to meet your goals. I never would have thought that he'd have any arm/hand movement and certainly would not have thought that he'd be able to do this after twenty some years. I realize that he's not going to be able to dress himself or operate a remote control or feed  himself or anything like that. But for him to be able to help to put on his t-shirt, for him to be able to let me know if his arm hurts and to let me know when he's ready, those are victories for sure.  I'll take a small victory any day.

Christmas 2012

We had a nice Christmas.  We went over to Dear Son's paternal Grandma's for Christmas.  She had the entire immediate family there including all of the grandkids and great grandkids. Grandma is 91 now, and reminds us of that every day. 

She ordered some pies from Baker's Square and then forgot which location she ordered them from so they had to call to verify the location prior to picking them up, lol.

She's had it at her house for so many years although she has it catered now instead of cooking everything.  There are other family members that bring the turkey and a ton of desserts. Dear Son's Aunt is an amazing baker and makes a ton of different cookies and other Christmas treats that are not only delicious but beautiful.

The great grandkids where there too.  One of the them got a new hat and she was glad to model it for me and put her hands up so I could take the picture. She is a real cutie.  She ran up and threw her arms around her Great Grandma the minute she came into the house.  She got a huge pink dollhouse for Christmas that had an elevator.  When I asked her what her favorite gift was, she said "a Barbie".  I hope Santa didn't hear that after bringing that huge dollhouse.

Dear Son got a new winter hat from his Dad.  I just loved how his face lit up when his Dad was opening up the present for him. I quickly grabbed my phone to take some pictures.  Dear Son has never been able to open any presents since his hands don't work and he can't grab anything. When he was a baby, I used to wrap everything then unwrap it all to open it. I got smarter as the years went on and switched to gift bags to save myself some time.  Dear Son got some new pants, new pj/lounging pants, new hat, shirts, carousel and money. I didn't decorate our apartment for Christmas this year.  I had stored our Christmas decorations at Dad's and he forgot to bring them over and then it got too late. I decided that since we'll be moving in a few months that I'd skip the decorations this year.  One thing that was really cute though, was that Dear Son was awake nearly the whole night pror to Christmas Day in anticipation of Santa.  He was so excited to open presents.

In other news, December 20th marked the one year anniversary of Dear Son's real food blenderized diet. As you may recall, Dear Son eats via a feeding tube and last year I got rid of the formula and switched him over to a real food blenderized diet. He's doing great on this new diet.  We went to the doctor two weeks ago and he lost more weight. 

 

• Dear Son has now lost 18.6 pounds since I changed his diet. That's great for someone who is essentially an invalid and doesn't move much.
• His cognitive skills are much better. Both his brain and his body work so much better now.  He is now able to communicate with eye blinks in response to yes/no questions. On the Friday before vacation, he has a blast at school because the kids in his class came up to talk to him and ask him questions. He responded with eye blinks and then that kid told another one and soon they all came up to talk to him and ask him questions. Dear Son was positively glowing when his nursing aide told me all of this after school.  In twenty one years, Dear Son has never been able to do this so it's really wonderful.
• His body works better. His dystonia (movement disorder that makes it hard to move since your body is contracted and doesn't relax) is much improved. I can lift up his arm and he no longer has any resistance. I tease him and say his arms, "move like buttah" and he smiles every time.
• His acne improved significantly. He went from bad acne to mild and nearly clear skin.
• He's never sick now even though kids/teachers at school get sick. Some of them got the colds/flu but not Dear Son. How cool is that? He used to be the first one sick and now that he's on a real food diet plus the Now Foods Organic Virgin Coconut Oil, he's been pneumonia free for over two years now and has not had any hospitalizations for pneumonia.
• He looks healthy!

I am also giving myself some credit. This is a huge committment on my part. I make nearly all of his foods. In the past year, all of the bread has been homemade, all of his protein sources are organic, he gets eleven servings of fruits/vegetables a day (some organic, some regular), omega 3's and probiotics. This means that when I get tired, I can't go through a drive through or put a frozen pizza in the oven for him. I've made everything from scratch for him for one year. There were only three times in the past year that I have him formula instead of making him real food.  All of his meals take two hours to administer since he gets four cups of blended food/water per meal and he gets one cup of blended food every thirty minutes. I wouldn't trade these results for the world though. It's also really easy to put together since I use an exchange type system. It is a ton of cooking though.

 

One benefit of his blenderized diet was at an office visit. We went to his wheelchair check up recently after getting some new parts. The wheelchair vendor, who's fitted all Dear Son's wheelchairs since he was three, couldn't figure out what was different. When I mentioned his acne was improved, he exclaimed, "That's what different! I thought Dear Son had just come back from vacation because he looked so good!" He went on and said he was amazed at the change.

 

Overall, it's been a great year. But the best is when I see his happy face.  You can tell that he not only looks healthy now but he feels great.  Here is another picture of Dear Son with his new hat that he got for Christmas, posing with his Dad. I like this picture since you can see how good Dear Son looks and because you can see how much his Dad loves him.

 

I'd also like to thank all of my readers for your continued support and comments. It's so nice to have people interested in Dear Son.  Wishing you all some rest and happy holidays.

Making a List and Checking It Twice... The Importance of Having a Pre-Op and Post-Op Plan

After Dear Son's recent surgery, I made a list of things that made it successful this time. One thing I noticed was that while I had a great pre-op plan, I really didn't have a post-op plan. I was so worried about getting through the surgery that I totally forgot about it. I realized this last week when he was starting to cough and had some breathing issues. I was able to turn things around by increasing the Now Foods Organic Virgin Coconut Oil and increasing his nebulizer (breathing) treatments. I realized then that I needed to have a better post op plan and that I needed to document it for future surgeries.

 

Prior to his surgery, I focused on keeping him well and making sure he was as healthy as could be before the surgery. Typically, his diet can range from 30-75% organic per week and prior to the surgery, I made certain to increase that to 75% or more. I made sure all of his fruit was organic so that he'd have as many antioxidants and as few toxins as possible. While normally, he gets 1 tbsp of Now Foods Organic Virgin Coconut Oil to prevent pneumonia, I gave him 2 tbsp/day. I gave him a breathing treatment the morning of the surgery, the first treatment he had since May of this year since he really didn't need them anymore.

 

For post-op, I realize that I needed to do a few things:

• Increases Miralax to twice a day for the first 10 days after surgery.  Since Dear Son couldn't be repositioned much in bed due to his incision, he wasn't moving around as much making it more difficult to have a bowel movement. In addition, the anesthesia made him more constipated so he needs additional help. He was constipated for 9 days after the surgery and is now back to normal.
• For the coconut oil, I'll increase it to twice a day for the first week, then cut back to once a day for the second week but give him 2 tbsp. For the third week, he can go back to 1 tbsp/day. This way, it will keep him from getting any pneumonia, when he can't be moved as much. The additional coconut oil will also help him overcome the constipation from the surgery.
• I think he benefits from nebulizer treatments for a while after surgery. I'll do 2 treatments/day week one and then go down to 1 treatment a day for the next week or so and then off the treatments.
• I'll use the Scopolamine patch to dry  up secretions, if they get too intense. On Friday, I noticed he was choking on his secretions and coughing a lot. I put the patch on for one day and it dried up secretions enough that he could rest comfortably. Less secretions means that he has less chance of aspiration.
• Chest pt-I was doing some chest pt after the surgery so I would just make certain to do it a few times a day, every day to keep his lungs clear.

Since Dear Son is medically fragile and since he needs this Vagus Nerve Stimulator to control seizures, I know that I need to have a great pre and post surgical plan in place for any future surgeries. I feel confident now that I have a good plan in place for the future.

 

Dear Son is doing much better than he was a week ago. His bowels are moving daily, he looks good and I continue to give him one nebulizer treatment a day. He smiles when he sees me get it out so I know it helps him.I suspect I can stop that in another week or so. 

 

My goal is to keep him the best he can be. It's been wonderful this year to see him improve so much with this blenderized diet. He is so much better cognitively and it's working great on every level. It's also been a lot of fun seeing him enjoy life so much and for the first time in umpteen years, it seems like things were easier for him to be him.   As a mother, all you ever really want for your kids is to see them happy. For a kid like Dear Son, keeping him well and keeping him healthy requires constant diligence since even minor slip ups can have a huge impact on him.

Tomorrow he goes back to school so it should be an exciting day. He is really looking forward to it and I feel confident that he is ready.

Medical Update: Gliches

Things seemed to go well for the surgery.  After the surgery, it took around 12 hours or so for his respirations to increase and to start getting back to normal. I felt pretty good about everything for a while however on Friday, the day after Thanksgiving, I noticed his breathing was starting to sound a bit loud. He was coughing more, or trying to cough. He was wretching a bit and he sounded pretty noisy. Anyway, I gave him a nebulizer (breathing) treatment and it seemed to help. His oxygen saturation level improved and went from 90 to 94. Due to the surgery, he's only been able to lie on his right side so the concern was that perhaps a right lung pneumonia might be starting. I have been turning him on his left side for short periods however his lungs sound so bad that I worry he can't breathe so I end up turning him back over within an hour or so. I also make sure I am totally awake when I do that since I worry he'll choke on his own secretions since he can't roll over on his own. Dear Son had been sleeping more and more and things didn't seem quite right. In addition, he hadn't been urinating  as much or having bowel movements as often. I started doing nebulizer treatments once a day, increased his Miralax to twice a day,  and did some chest pt. 

 

Around 1 a.m. or so this morning, I gave him his seizure medications (he gets them every six hours) and he sounded poor.I also gave him an additional dose of the Now Foods Organic Coconut Oil in case he's coming down with pneumonia. He's at high risk for pneumonia after the surgery.  I did some chest pt and gave him a nebulizer treatment at 2 a.m. and he sounds much better. His oxygen saturation was 93 after the treatment and he is breathing much, much better and he's stopped coughing.

 

I'll probably call the doctor tomorrow. I wonder if the anesthesia made it harder for him to have a bowel movement and I'd like some clarity on the lungs. I am not sure if I need to be doing anything else for him at this time. Our clinic visit is in a little less than 2 weeks and we should be able to get the settings on his Vagus Nerve Stimulator increased at that time so that should help these smaller seizures. Overall, I still think things are o.k. however I am a little concerned that this noisy breathing is not going away.

Happy Thanksgiving

Today I am most thankful that Dear Son made it through his surgery. This photo was from the hospital. He's doing pretty good...we're home and he's happy. I am still a little afraid to turn him on his left side since that is where the incision is but I am able to sit him up in the Lazy Boy swivel chair by using the hoyer lift. He enjoyed sitting there and listening to his music with his headphones.

 

Also, it's been 11 months since I started him on his blenderized diet made from real food.  That means that for the first time in 8 years, he was able to have a full Thanksgiving meal. It was blended up in the Blendtec of course and given through his feeding tube but it was still nice that he could smell the food and have some turkey.

 

In looking back on the surgery, I think they did a few things that made it successful for Dear Son this time. I think have an anesthesiologist that was board certified in anesthesia and critical care helped. They were able to use a shorter acting sedation which lessened the respiratory depression. Second, because they were aware of his risks of respiratory depression, they were able to put the breathing tube in differently this time (last time they didn't use it at all). Also, there were two other things that helped. We used the scopolamine patch, a patch that dries up his saliva.  I think this helped a lot because it took about 12 hours after he got out of surgery before his respirations increased to a more normal range.  I doubt he could have coughed very well to clear up the saliva prior to that and if he couldn't cough, he would have been at higher risk for aspirating the secretions into his lungs. And finally, anesthesia recommended that he have a nebulizer treatment with albuteral the morning of the surgery and prior to his surgery to open his bronchial airways. I gave him a treatment at 8:30 a.m. the morning of the surgery. His surgery was scheduled for 12:30 p.m. and it was started around 2:45 p.m.and they finished in a little over 2 hours or so if I recall. I think all of these things helped.

 

 

 

This picture was taken on Wednesday, the day after the surgery. You can see he's pretty happy. He is still having some breakthrough seizures however. When they turn the device on, they start him on a lower setting and work up to his previous setting. Currently, the device cycles on every 3 minutes and the last one cycled every 20 seconds. We'll see if he can make it to his follow up visit.

 

He looks pretty good now. All in all, a lot to be thankful for!

Surgery Update

We just got home 1/2 hour ago. The surgery went really well and there weren't any complications. I am so relieved. He looks good, but a little tired as expected. They put in a larger device that should have a longer battery life. 

THANK YOU so much for all of your comments and emails. I appreciate all of your prayers and wishes for Dear Son. I was so nervous this time and that is unusual for me. I am relieved to have this behind us.

I'll write more later after I get some sleep. I've been up all night and am very tired. I have to work tomorrow as well plus shop for Thanksgiving.

Have a wonderful holiday.

Dear Son's VNS Surgery-Meeting with Anesthesia

The meeting with Anesthesia went well on Friday.  We discussed Dear Son’s past surgical history and mapped out a plan for tomorrow.  Prior to meeting with the Attending Physician (Clinical Associate), I met with the “senior” resident. That drives me crazy quite frankly however because we go to a Big Academic Medical Center, they make you meet with the resident first.  I guess it’s not stressful for me enough to have to go through this surgery and to go back through my notes and rehash all of it to prepare for the meeting. Then I have to go through it with the resident AND again with the Attending Physician.

As I mentioned before, Dear Son is a high risk for respiratory depression and aspiration, meaning he has trouble breathing over the anesthesia and the airway can collapse. This is why the physicians ruled out any further surgeries after 2009. In addition, Dear Son has trouble normally managing his saliva. For that reason, he can never sleep on his back and must be side lying at all times. He only lasts two hours on his left side before he starts choking so I make sure to turn him at the two hour mark or as soon as I hear him gurgling. I typically prop him on his side at night and since Dear Son can’t roll over on his own, I turn him. If he were to be on his back and choking, he couldn’t turn himself over to help himself.

Anyway, it went well until he states that due to Dear Son’s extremely high surgical risk, that they may have to do the intubation (insertion of the breathing tube) while Dear Son is awake! He states that the administration of anesthesia prior to getting the tube in place can cause the airway to collapse hence doing it when he was awake. This is the point in the exam where the residents fail me. They come up with these ideas that they wouldn’t want done to them and that they have no problem recommending for someone else.  I told him it wouldn’t be done. I wouldn’t do it for myself and it won’t be done for Dear Son. Can you imagine someone placing a breathing tube in your mouth while you are awake? Now can you imagine someone inserting a breathing tube while you are on your back, choking AND you can’t roll over to help yourself or speak or push them away with your hands to stop?  I can’t either, that’s why it won’t be done. Anyway, I explained that Dear Son has an easy gag reflex and that if they tried to do it while he was awake, he would definitely aspirate so that the risk of aspiration was 100%.  I said previously people tried deep suctioning (where they insert a tube down to your lungs to suck out the fluid) and that in every case, Dear Son gagged, choked an aspirated. After I explained this to him and he kept trying to build his case, I simply stated that he needed to get the attending because I wasn’t going to agree. He did. We didn’t argue or anything and overall he was fine, it was just a case where the residents think more in terms of solving a problem than they do with the practical applications of things.

The Attending Physician came in and she was very nice. She agreed it wasn’t the right solution and said it wouldn’t be done. She said it’s not very successful in disabled patients anyway. We went on to have a nice discussion of the entire procedure. Granted, it’s really high risk.  As in enormously high risk.  She had read through the Anesthesia notes from August of this year when I had met with Anesthesia to discuss the possibility of throat surgery. The surgery was nixed due to the high risk. We talked about the previous surgery for the replacement of Dear Son’s Vagus Nerve Stimulator and the drugs used and what happened. I  had reviewed my notes previously from this surgery and gave her the highlights. Like I mentioned, there were problems however when I went through the issues with the surgery, I am careful not to use any names. My goal is for a great outcome tomorrow; I am not trying to ruffle any feathers. Since they won’t be using Propofol, they’ll use a technique called, “Rapid Sequence Intubation” to insert the breathing tube. Essentially, they administer anesthesia and a paralyzing medicine quickly, then insert the breathing tube quickly. Once it’s in, Dear Son should be o.k. The risk to the procedure is if his airway collapses from the anesthesia PRIOR to the insertion of the breathing tube. She asked me if any of the doctors had difficulty in inserting the breathing tube in past surgeries. I said I wasn’t sure however he had been intubated previously (on a ventilator) and that I didn’t recall that. She said if those insertions were successful previously, then the odds were things would be o.k. A lot depends on how Dear Son can manage this.  We also discussed using a Scopolamine patch to dry up Dear Son’s secretions. We had previously used this patch however it caused seizures for him. I did notice it doesn’t cause seizures until the 12-20 hour mark but is really effective in drying up secretions. We agreed to put the patch on 6 hours prior to surgery ; this should help prevent some aspiration since there would be less secretions to swallow or aspirate. Other drying agents weren’t effective for Dear Son.

We discussed the surgery and mapped out a plan for tomorrow:

·        Dear Son will get an IV in the pre-surgery room. We haven’t had issues with an IV previously so that is good.

·        They’ll keep him on his side so he doesn’t choke. They’ll keep him like this up until they intubate him.

·        Due to his high surgical risk, they’ll most likely use an Anesthesiologist that is double board certified in Anesthesia and Critical Care (ICU) versus one that is certified in just Anesthesia. (The good news here is that most of the ICU staff is familiar with Dear Son and also we see the Section Chief of Pediatric Pulmonary in clinic so she is very familiar with him should there be any issues tomorrow.)

·        They’ll give him IV meds to put him to sleep.

·        Next, they’ll do the Rapid Sequence Intubation. He’ll probably need to be on his back by that time for that but the surgery can be done on Dear Son's side. It’s actually on a good side for Dear Son and he doesn’t choke as much on this side. Once the breathing tube is inserted, they’ll put him on a ventilator for the surgery. The ventilator breathes for him in case he can’t breathe on his own (respiratory depression is averted since the ventilator breathes for him).

·        The surgery is performed.

·        Once the surgery is done, they’ll shut off the anesthesia gasses. They’ll measure the gasses on his exhalations which will tell them how much of the anesthesia is left. They are using a short acting anesthesia for him. Once they no longer have any anesthesia present in the exhalted breaths, they’ll remove hm from the ventilator.

·        The breathing tube may or may not be removed right after the surgery. It depends on how he does. I expected this. They think they can remove it right away but we’ll see.

·        He’ll stay in the hospital overnight to make sure everything is fine.

Overall, the meeting with anesthesia went well. So the nerve racking portion will be getting the tube in.  After I came home from the meeting, I recalled an episode at the local hospital many years ago where they administered seizure medicine (Dear Son was taken to the ER for seizures.) without protecting the airway and his airway collapsed and they had a code blue. This was while we were waiting for the helicopter to arrive to take him to Big Academic Medical Center.

Anyway, last night I thought I’d send an email to two of the ICU docs that have treated Dear Son previously. If I recall, one of them was present when he had respiratory failure in 2009 when he had the swine flu the day before his Make a Wish Trip. The other doctor was there to remove the tube and I couldn’t recall if she had but a breathing tube in his for a different time when he was on a ventilator. I sent an email to them both with a quick question to see if they recalled having any difficulty inserting the breathing tube in Dear Son. I wasn’t sure if I’d hear back. With all of the time we had spent in the ICU over the past years, I have come to know most of them pretty well and they certainly know Dear Son.

Luckily, one of them responded this morning and even took the time to look up the medical records from 2009 (I sent her his medical record number in the email, lol.). She provided me with the drugs they used to intubate him and also told me she didn’t have any issues getting the breathing tube in. I think that is good news. I’ll be able to provide the Anesthesiologist with this information tomorrow. And because it was all done at Big Academic Medical Center, they’ll know the docs involved.

Thank you for all of your prayers for tomorrow. I am still nervous but I think I’ve done everything I can to help it be successful tomorrow. I just heard back from the other ICU doc and she mentioned that she didn’t recall any issues with intubation so that certainly helps. I am also glad we are able to get this done right away-Dear Son is having more seizures now that the battery is low. He's crying out in his sleep and during the day; when I look at him, his hands are shaking.

Dear Son Surgery Scheduled

As I mentioned previously, Dear Son has a Vagus Nerve Stimulator (VNS) implanted to control seizures. Over the past month or so, his seizures began increasing and it was discovered that the battery was low and needed to be replaced.  Since the VNS is located internally, he'll need surgery to replace it.  The VNS is located beneath his left arm.

 

On Monday, Dear Son is scheduled for surgery at Big Academic Medical Center. I am a bit nervous to say the least.  He initially got the VNS in 2004 and when the battery went low in May of 2009, we had it replaced. Unfortunately, a decision was made to use heavy sedation vs. general anesthesia and when they did that, Dear Son was unable to breathe over the sedation (this is called respiratory depression). He developed a mucous plug and his lung collapsed.  You can read about it here. Once his lung collapsed, he developed an infection and eventually both lungs became filled with fluid with his left lung being totally filled with fluid and his right lung at 75%. He was in the ICU for 10 days and was hospitalized for nearly three weeks.

 



After that, I contacted the Make a Wish organization to schedule his Make a Wish Trip.  I worked with them and we set it up for his 18th birthday.  The night before we were scheduled to leave for the trip, Dear Son got the swine flu and a viral pneumonia. You can read about that here. He had respiratory failure and was placed on a ventilator for several weeks. He eventually recovered but all in all, it was a horrible year. Having this VNS surgery brings back all of these horrible memories. It's really hard. He's had some 70 plus hospitalizations in his life and to be honest, 2009 was the hardest ever and it's not easy to go back.

 

Tomorrow we meet with anesthesia.  It's my understanding they'll use a breathing tube this time and they'll place him on a ventilator while they do the surgery. If all goes well, they'll remove the tube after surgery and he'll stay there overnight (I always stay with him:) and we'll go home on Tuesday.  He'll be out of school for a few weeks until the incision heals.  We just can't be pulling on the incision and since he's not able to roll over, etc. on his own, it will make it difficult to move him around for a few weeks.

 

Anyway, I'd appreciate your prayers. I am trying to be optimistic that things will go well this time and I hope things go well tomorrow with anesthesia. I am going in with the attitude that everything will go well however it's a little hard not to look back. Dear Son is medically fragile and his biggest risks are respiratory depression and aspiration (aspirating his own secretions). After everything happened in 2009, I was told that he could not have any surgery of any kind since they didn't think he could make it. Unfortunately, Dear Son needs this Vagus Nerve Stimulator to control the seizures. I think the good news is that Dear Son has been hospital free from pneumonia for over 2 years now since I've been using Now Foods Organic Virgin Coconut Oil to prevent pneumonia. In addition, I've been able to build his immune system through converting him to a blenderized diet of real food. Overall, this is probably the healthiest he's been in years although he still is medically fragile and an extremely high surgical risk.

 

I'll try to post on Tuesday to give you an update, when we get home. I am hoping things go well. If it does, I'll have a lot to be thankful for on Thanksgiving.

 

Note: Dear Son is a 21 year old man who was born with intractable seizures, dystonia and is severely developmentally delayed due to a random mutation of the ARX gene. He was one of the first boys in the world to be discovered with this genetic mutation. His seizures are controlled with multiple medications and a Vagus Nerve Stimulator. He is a delightful and happy young man who lives each day joyfully; I am blessed to have him as my son.

Liberace Wheelchair Halloween Costume 2012

 

 

Things were a bit of a bust this year for Halloween. As I mentioned previously, I had planned this costume for last year however they did not allow Halloween costumes at school due to religious reasons. This year, still no party but they said the kids could dress up if they wanted.  Of course, I decided Dear Son would dress up!

 

I decided on the Liberace costume after seeing a photo on the internet of a piano.  I wanted a costume where I could utilize his wheelchair and I wanted a costume that incorporated sitting in it. Once I decided on a piano, since he'd be sitting, I brainstormed on the most flamboyant costume or character that would play the piano and that's where I came up with Liberace. It's easier to create a costume with a character that is "over the top" than say, just a standard paino player.

 

Unfortunately, Dear Son began having more seizures the last week. I was called to school yesterday for an emergency since he was seizing. I am guessing his Vagus Nerve Stimulator's battery is low; that is the device that is implanted to control seizures. I spoke with the doctor this weekend and yesterday and we will be going to the doctor on Friday so he can check the settings on the device (they have handheld software that they put near the implanted device and it gives the current settings and battery life). As a result, I couldn't send Dear Son to school since I knew he was having seizures. So, he didn't get to wear the costume anywhere:(

 

I decided to dress him up today and get some pictures at the clubhouse at our apartment complex. I called a friend of mine to help me out. We live on a golf course and the clubhouse is nicely decorated for fall so I thought it would make for some great pictures. Unfortunately, Dear Son had some seizures today so he didn't smile at all and he closed his eyes for most of the photos. 

 

Moving on, here he is in his Liberace wig. I purchased an Elvis wig and then put some red blush on his cheeks to ramp up the costume.



 

 

 

Here is the completed costume: a piano with a chandelier.  Liberace was known for his "over the top" costumes that were luxurious and attention getting. He was known as much for his costumes as he was for his talent.

Here is a nice photo of the piano I made. I added fur boas to his wrists and added some rings for bling!

Here he is as Liberace. I think he looks more like a young George Washington, lol.

Here are the rings, which I found at Walmart for only $5 that I thought would be great. I actually love this floral one!

 Here I am with Dear Son. It's sad that he's not feeling well with these seizures.

Here is a photo of the back of the piano with Liberace name on it. I used silver glitter stick on initials for this. There were some pumpkins at the clubhouse so I added those to the top of the piano to add some color.

 

Here are the rings! Liberace often wore rings on every finger!

 

Now, for the details and a mini tutorial.  To create this costume I had a few obstacles: I had a wheelchair but also, it's hard to get a button down shirt on Dear Son with his disabilities. As a result, I need to find a way to make the costume formal without resorting to a tuxedo or velvet dinner jacket. Here are some photos of Liberace that I used for inspiration. Notice the chandelier on the piano.

 

 

 

 

I chose these photos because they had fur, or a cape and a broach, which I thought I'd use for Dear Son's costume. Notice the chandelier on the piano.

Notice the rings.

From there, I decided to get my supplies. First, I order the wig. Since there weren't any Liberace wig, I ordered an Elvis wig and cut off the sideburns.

Here's my Liberace with the Elvis wig...

 

Next, I purchased some supplies: wig, boas, a cape, chandelier, foam for the piano keys and glitter ribbon for the piano keys.

 

I used a store bought cape and added a fur boa to the collar and then stapled two black boas down the front to add opulence.

 

For the costume, I used a broach to attach the collar. I decided to use a simple white turtleneck since that's easier to get on Dear Son with his disabilities.

 

Next, I worked on the piano. I attempted to find a box that was wide enough however most were too tall. I was at Michael's and noticed some styrofoam sheets but when I return to purchase them, they were sold out. Instead, I purchased some floral foam that was 36 inches wide, 12 inches deep and about 4 inches tall. It was perfect. I also purchased a display board in black, the three sided type that kids use for science projects and such. I like using those boards since they are pre-painted and it eliminated a step. I didn't take pics of the this mainly because I was called to school for an emergency while I was making it, so I didn't take pics.

 

I think the keyboard turned out great. I cut the black display board and glued it to the floral foam. I cut a larger piece for the bottom so that I could glue the white foam to the cardboard to make the keyboard. Once I cut and glued the white foam on, I simply drew keys on the white foam. I used the black glitter ribbon that I used for the keys to measure the width of the keys.  Next, I used the black glitter tape and cut some black keys, then stuck them on the piano keyboard. I purchased some gold letters at Walmart and stuck them on to create the "Baldwin" logo.

 

 

I needed to fill in the seams and originally, I planned on using some silver Christmas garland to fill in the seams however it would stick so I used the black glitter tape and added that. It's very hard to photograph since it sparkles so much but in person, it's awesome. It looks like a tuxedo stripe with glitter. I wish I had purchased more glitter tape to finish off some of the seams however I couldn't get to the store so I just made do.

 

 Another closeup of the sides.

 On the back of the piano, I used some silver stick on letters to spell Liberace. I tried to space them evenly however they fell off one by one and when I glued them back on, the spacing seemed to suffer a bit, lol.

 Here is a photo of the piano that I made sitting on the table at the clubhouse. I thought it showed up better here. I added a black glitter crow and chandelier.  The little pumpkins were from the clubhouse but they added some nice color so I used them.

 I think the "Baldwin" logo I made helps it look authentic.

 Here's a picture of the back . I added black satin fabric to the bottom of the piano to cover Dear Son's legs to make the pictures look better. In hindsight, I am not sure if it really helped or if I should have left it off.

 

Here is a photo of the chandelier. I purchased it at Michael's however it was the last one there and a few of the crystals were missing so I removed the crystals and added the silver Christmas garland for a more graphic effect. Unfortunately, the glittered chandelier doesn't seem to photograph very well.

The rings were important to Liberace so I knew I needed to include them in the costume. I purchased two rings from Walmart for $5 each for the costume.

I added the broach to the cape to add some glamour as well. Here they are before I added them.

Here are the rings on Dear Son. I thought they made the costume.

And last, another picture of my son and I. Not sure why my eyes look odd, lol.

I hope you enjoyed the Liberace costume I created.

Happy Halloween!