Monday, June 29, 2009

Make a Wish Update and Other Stuff

Last week, volunteers from the Make a Wish Foundation came to our home to talk about our wish. Thankfully, I printed off all of the lovely suggestions everyone gave me when I asked for suggestions for our wish. That was really helpful. The volunteers were so gracious and even brought Dear Son a gift! Dear Son had been having some medical issues in the days preceding their visit so I wasn't certain that he would be awake for their visit since they came at 7 p.m. I managed to get him up and into the rocking chair and he laid his head on a pillow on the table while we talked about the trip. After a while, Dad transitioned him to the new swivel recliner and he fell alseep. We talked to them about Dear Son's favorite things-Barney, listening to country music, his love of animals and swimming and tried to build around that. I also talked to them about his medical needs for the trip. We need a hoyer lift and IV pole for the room as well as some other things. As for other wishes, we asked them for suggestions however they didn't really give us any ideas. The only request I gave them was that I need things to be easy since it can be hard getting around with Dear Son.
They asked us a ton of questions and basically filled out a bunch of forms. We had to show proof of our driver's license, auto insurance and give them a copy of Dear Son's birth certificate. They asked us all kinds of questions-did we have our own luggage, what kind of camera we had and then specifically, how much storage on the camera. It was an interesting experience. They also gave us a choice on publicity, you either agree to it and refuse it. We agreed to it since I feel if someone is nice enough to grant you a wish, you should be gracious enough to allow them to photograph that.
The next step is the trip needs to be approved. Once that is done, they'll check with his physician to see if Dear Son can manage the trip. This should take around thirty days or so. If the trip is denied, then you or they come up with a different wish. We are open to suggestions and are simply appreciative that they would even grant Dear Son a wish!
Trips take three to six months to plan, according to the foundation. We are hoping to take the trip in early November, when Dear Son turns eighteen. I think that would be a lot of fun to do this trip on his birthday and then we'll always have these memories. My dream is that I see Dear Son's smiling face the entire time. If we can do things that make him happy, I will be excited. We have to take the trip during cooler months since Dear Son can't sweat, with the patch he wears (He wears a scopolamine patch to dry up secretions in his throat since he can't manage them. As a result of the patch, it does not allow him to sweat so he can overheat easily, hence the trip must be made when the temperature is cooler.)
We are really looking forward to this. After his last hospitalization, I knew that we needed to do something fun. I don't think Dear Son will survive another pneumonia. I can see Dear Son is getting weaker and is losing his ability to sit up. I hope he can endure the plane ride since he won't have a supportive seat, like we do for his wheelchair. I also don't know if he can physically sit up that long, without leaning on anything. And then there is the issue of trying to get him into an airplane seat. Currently, I use a hoyer lift to get him into his wheelchair. If Dad lifts him into the seat, then he is going to need some room in order to lift him.
We also have to figure out what we will do in terms of changing him. We need to lie Dear Son down to change him so we'll have to figure out how to do all of this at the airport since we can't do it on the plane. I really don't want to do a Texas catheter for the trip. Once we get approved, we'll have to check into the weight restrictions on the luggage and may need to have his formula shipped ahead of time. The Make a Wish Foundation has a travel coordinator that will get in touch with us once the trip is approved. They do this every day so hopefully they can make things easier for us.
Other than the trip, it's been a busy week. Prior to Father's Day, Dear Son began having more seizures and then some other medical issues. His feet started swelling, his legs turned blue and cold and the bottom of his foot was burning up. In addition to the seizures, he began sleeping excessively, around 20 plus hours a day and I could not arouse him. The day after Father's Day, he woke up at 5:30 in the morning with a seizure that last twenty five minutes. I tried using his vagus nerve stimulator but it didn't stop the seizure. I then administered his morning meds and the seizure kept getting worse. Finally, I had to administer Diastat, a rectal valium, and the seizure finally subsided. It took a few days for him to get back to normal but I think he's starting to feel better. I am finally getting some rest as well.
After that, summer school started and it's been a lot of work getting everything together. While I keep a template on my pc of last year's instructions for school, it still takes a while for everyone to get on board. Probably the biggest issue I had last week was the school bus. Due to Dear Son's inability to sweat and his weak lungs, he requires an air conditioned bus. It's in the Individual Education Plan (IEP) however for some reason, the school failed to notify the bus company that he required an air conditioned bus. I had to make several calls and after four days, they were able to get the bus issue resolved. The school apologized saying it was their error and the bus company had apologized as well, saying they didn't receive any notice. I understand those things happen however I was worried that he might have an emergency in the interim.
Dear Son is enjoying himself however. Every Tuesday and Thursday, the special education recreation organization offers extended days with extra activities. On Tuesdays, they stay in house but do various projects with art or music. Our cat Wiggles likes the art projects best, because he likes to play with them. When he does, it makes Dear Son laugh so it's extra enjoyable. On Thursdays, they go on field trips. These extended days allow me to work without hiring a sitter. His favorite days are Wednesdays and Fridays because he's down at the pool. His high school teacher saw him last week and said he was just glowing; he was so happy to be at the pool!
Finally, I am having some issues with blogger. Recently, I upgraded to IE8 and some people are experiencing the same issue that I am, being unable to copy and paste from Word into blogger. I typically write my stories in Word and then cut and paste them into blogger so this is a major issue! I don' t know of a work around. Posts like this I can write in blogger however my stories I like to write in Word.
I will try to post more often, now that summer school is underway. Oh, the bills for the May hospitalization have arrived. The billed charges, before discounts, were $254k; 92k was for the vagus nerve stimulator surgery to replace the battery (actually they put in a newer model) and $162k was for the ICU and the rest of the stay. Year to date billed charges are in excess of $330,000. Hospital bills arrive daily however thankfully, we have now met our stop loss.

Sunday, June 28, 2009

Delay

I am sorry about the delay in posting. I wrote a post this morning in Microsoft Word and I can't get the "paste" function to work. I will try again later this evening.

Thank you for your patience.

Sunday, June 21, 2009

Happy Father's Day

Dear Son's Dad

Happy Father's Day to Dear Son's Dad and all of the fathers today. Dear Son has been blessed with a great Dad who is always there to help. As Dear Son weakens, we rely on Dad more. Now that I can no longer lift Dear Son in and out of the car, Dad needs to accompany us on all doctor visits, along with all other visits. The list of his visits seems to grow longer every day. In August alone, we have senior portraits, a visit to the orthotics place, the pulmonary doc and the pediatric neurologist among other things.
Here is Dear Son's new recliner/rocker we got on Craigslist for $150.
Dad helps out financially too, without my asking. In May, when Dear Son was hospitalized for weeks, he paid for all of my parking at the hospital, which was a few hundred dollars; then there was the summer school after school program, another couple hundred dollars, along with all of the medical co-pays, another $500 plus dollars and today, we are getting a new (to us) leather recliner for Dear Son from Craigslist, since Dear Son is losing his ability to sit up in his rocker. I could never do all of this working part time plus taking care of Dear Son 24/7.


But it's not just physical and financial help that he gives Dear Son. He brings a great attitude when he comes over and tries to make Dear Son laugh. He worries about the little things with Dear Son and takes good care of him when it's his weekend. I can rest easy at those times and not worry about Dear Son.

Taking care of Dear Son is not an easy task, especially now that he has grown so much and continues to grow! Raising a child, and especially a special needs child, is not a one person task. I could never provide the good care that I do without the support and assistance from Dad. He works with me to help provide the best care we can for our son, even though we are divorced. And for that, I am thankful. So today, we'll honor Dad on his special day. We only wish all special needs children were as lucky. For they could use a father like him.

Friday, June 12, 2009

Dear Son Approved for the "Make a Wish"

Photo of Dear Son at summer school last July. He loves the pool or rather, he just lies in the water and floats for 45 minutes while his aide holds him the entire time. He zones out the entire time. He can't wait to get in the water though and as soon as he gets to his "spot" in the water, he closes his eyes and doesn't open them until it's time to get out.

While Dear Son was in the Intensive Care Unit last month, I had plenty of time to reflect on his life. As time goes on, his lungs are getting progressively weaker. He can no longer sustain either the Bi-Pap or C-Pap machines and there was much discussion as to whether he could survive an extubation, had he been placed on a ventilator. His throat muscles have deteriorated that he hasn't been able to process his secretions for some time now. In 2004, he got the g-tube, in 2006, he went on g-tube feedings and hasn't been able to eat anything by mouth since then. In addition, they tell me that they think he aspirates all the time. I have known for some time now that he has a progressive condition and that he will not recover. It is my understanding that he will most likely die from pneumonia so every hospitalization is like a race against time. As he lie in the bed, I felt that life for him, just hadn't been very fair. Any mother wants her child to have a good life, wants her child to be happy and to have it all. Dear Son however, has had almost sixty hospitalizations in his seventeen years. Far too many, if you ask me. Each time, we get a little closer to the end and I worry that one of these times, it will be over. I decided when he was there that I wanted to make sure that we would do something really fun while he could still enjoy it.

Last Sunday evening, I decided to check out the, "Make a Wish Foundation". I read the requirements and Dear Son easily met them so I completed the online form. On Monday, the local office called and on Tuesday I returned the call to the foundation. They asked me a few questions including his diagnosis and his doctor's name. They faxed a form and called his pediatric neurologist and by 10 a.m. on Wednesday morning, Dear Son had been approved for a wish.

While the other kids splash in the pool, Dear Son just floats the entire time.
Volunteers for the, "Make a Wish" foundation will come here within the next thirty days to discuss his wish and it will take three to six months for a wish to be granted. Now comes the hard part, picking a wish that he will love. And that's where I could use your help.


Dear Son loves people, animals and loves the outdoors. He loves swimming (o.k. maybe just floating in the pool) and country music. I think I would like to take a trip somewhere with him (his father will go on the trip as well) since the only place I usually pack for is the hospital. Also, since it's so hard to get around, it would be great to have someone make the trip easier for us. I have thought it might be fun for him to swim with the dolphins or to go to Nashville or some country music place. I'd also love it if he could get a therapeutic massage. I'd like him to have a lot of fun and to be pampered. If you know of someone who had a trip or if you have any ideas for him, I'd love to hear them. Dear Son has no real use of his hands or arms, can not speak, is not toilet trained and can not stand or weight bear at all. Keep that in mind as you think about things that he may enjoy.

Finally, Dear Son will be out of school until summer school starts on June 22nd. I probably won't be posting as much since I will be caring for him 24/7 on most days, along with work and doctor appointments. I'll do the best I can. On Monday, he'll receive a $3,000 custom back to his wheelchair that will better support him now that he can no longer sit up without falling over to the side.

Note: Dear Son is seventeen years old and suffers from a progressive neurological disease and intractable seizures as a result of a random mutation of the ARX gene. This mutation causes infantile spasms, dystonia and severe mental retardation. He also appeared in the Journal of Neurology a few years ago.

Wednesday, June 03, 2009

This is Not Your Father's Hospital Bed-Part III: Looking Forward Instead of Looking Back

Before Photo: This is what a typical standard hospital bed looks like when they ship it to you. Note the universal headboard and footboard.
After Photo: This is Dear Son's new Tendercare Bed. The Tendercare bed features a patented "slip over" headboard and footboard; the headboard and footboard just slip over the hospital bed. The hospital bed remains fully functional.
I remember being the in the Pediatric Intensive Care Unit (PICU) with Dear Son, just a few weeks ago, wondering if I would get to take him home. We are getting to the point, where one of these times, he is not going to make it. I was hoping and praying that this would not be the time, knowing full well, that all of his time is currently “borrowed”. As the chest x-rays flip flopped, I became more worried, one day they would be worse, the next day no change and then the following day, it would be a little worse. One tell tale clue that things are generally not going well, is how long you stay in the PICU; I usually will ask how long Dear Son will be there, so I can schedule my work around it. When I asked this time, they said two weeks. Today, hospitals move you in and move you out so when you stay in the PICU you, you know you are in serious trouble.

A close up of the nightstand. I made the lampshade.

Luckily, Dear Son made it through. Once he was transferred to the Pediatric floor, I began to think about going home. Once you have been there long enough, you know the steps: PICU first, Step Down, pediatric floor then home. But there was something different this time, Dear Son was getting his new hospital bed and we had been waiting for it to be shipped. We had something to look forward to.

Looking forward to something, is not something that happens very often when you care for someone chronically ill. Your life somehow changes over the years, as his needs increase, my life as I used to know it, disappears. My life and his life become melded into one where survival for both of us, is the only goal.


Before Photo: This is what a standard hospital bed looks like when they ship it to you. Most are used and nearly all come in this awful brown color. In the first photo above, I painted the headboard and footboard black.

I remember many years back, when they recommended a hospital bed. It was very depressing. The hospital beds, most of them used, are shipped to your house. More often than not, they bill the insurance for the bed as a rental, until the purchase price is met, then it becomes yours. Yippee. Not. No one wants an ugly, used, hospital bed as their bed. And what’s worse is that the worse the patient gets, the more time you get to spend there. Not only are they ugly, but your bedroom begins to look more like a hospital room and less like a home. And that is where our new bed comes in.

Gary Owens, started Tendercare Beds, a short time ago. As a woodworker, he created a bed for his wife, Gina, who had a hospital bed of her own. With his slip on, slip off, headboards and footboards, he changed an industry. No longer are hospital beds something to be avoided, but now they are something you can have, and be proud of. It no longer matters if the insurance company only pays for a used hospital bed, because you can make it new with a Tendercare bed. You no longer have to be ashamed to get a hospital bed for your loved one. You no longer have to be ashamed to let someone see your bedroom. But most of all, you don’t have take away your kid’s bed, and replace it a hospital bed. Can you really look your child in the eye, and tell them they are going to get better, when you bring in a used hospital bed? And who looks forward to that?

But with our Tendercare bed, we were definitely looking forward to that. We had placed our order for a black, raised panel bed. It would look perfect in Dear Son’s bedroom. More important than that, he would have a “real” headboard. Not a fake, bamboo blind headboard that I made, so he would have something, but a real one. And we all know that having a “real” headboard on your bed, is good feng shui. And when you are sick, it’s important to pay attention to that.

Here is Dear Son's Tendercare bed with the side rail up. The bed remains fully functional with the slip-on headboards and footboards.

On Monday, our headboard arrived and it did not disappoint. It was absolutely beautiful and brought tears to my eyes. Dear Son had a real bed. A real bed that still met his needs. I could still operate the hospital bed, raise and lower the bed, pull up the side rails, raise the head or the foot of the bed and no matter what I did, it would still look beautiful!


But the best part of all, was seeing Dear Son’s face. We had been talking about the bed for some time now. When he got the hospital bed the first time, from the durable medical equipment supplier, there was nothing to talk about. I had talked to the DME about getting him a brand new hospital bed, so we didn’t have to have an ugly used one, but that was just to make the idea of a hospital bed palatable. But this time, I could get excited about the bed and Dear Son could too! He came home from school and I wheeled his wheelchair straight into the bedroom. He looked right at his new bed and broke out in a big smile. His eyes lit up and he couldn’t stop smiling. Later, when I layed him in the bed for the first time, he looked straight up at the headboard with a big grin on his face. You could see it in his eyes, that he was happy. And that was the best part!

I called Gary to thank him for making this lovely bed for Dear Son. Gary had contacted me when he first started his business, asking me what I thought of his bed. I told him it was a fantastic idea and I thought many retailers would be happy to sell his beds. I told him that I imagined Pottery Barn and Nieman Marcus would want to carry his beds. After all, they are really nice. He made this bed especially for Dear Son and it’s the first time he used the third panel in the raised panel design. You can see this third panel on top of the raised panels on the headboard. I think this bed is just beautiful.

Note the third panel. This is the piece that is above the pillow sham. The raised panels sit behind the pillow sham.Here is a view of the headboard. You can see the two raised panels and then the third panel above. Can you believe it's a hospital bed?

Here is a picture of the head of the bed in the "raised" position. As you can see, the bed remains fully functional.

But what’s really amazing, is that he’s changed an industry. No longer do the Durable Medical Equipment (DME) providers have to sit back and wait for people to call them when they need a hospital bed. No, they can actually tell people that they have a hospital bed they will want. And therein lies the beauty of a Tendercare Bed. A Tendercare Bed is not only a bed that meets your needs, but a bed you will want. You don’t have to be ashamed to get your child this bed, or your wife this bed or your brother or sister this bed. You can order this bed and be proud. But the best part of this bed, is that when they get it, they will cry with tears of joy, not tears of sadness. Because when you get a hospital bed, that’s what used to happen, you would cry. You would cry because you lost your own bed, you would cry for what was coming ahead and you would cry for the life you were leaving behind. If you know of anyone who got a hospital bed, you will know that is true. They not only cry, they will beg you not to put them in a hospital bed. But this time is really different. Now you can cry for joy. And that’s exactly what I did when I saw Dear Son’s bed. I cried. It was beautiful.

Note: Dear Son suffers from a progressive neurological disease and intractable seizures as a result of a random mutation of the ARX gene. This mutation causes infantile spasms, dystonia and severe mental retardation.

Gary Owens is the owner of Tendercare Beds. If you would like more information or to purchase a Tendercare Bed, you can contact Tendercare Beds here.
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