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!