This is Not Your Father's Hospital Bed

You may recall several months ago, when I wrote this post regarding my feelings about getting Dear Son's new hospital bed. I was worried that it would look institutional and not feel like home. I thought I'd share with you the changes I made.


He received his hospital bed a while back. The bed had metal and plastic universal end pieces which meant the headboard and footboard were the same height. While perfectly functional, it looked odd with the headboard so short. I wanted to make the bed look more inviting, like a teenager's bed might be and more modern so I made a few changes.

Here is the before picture. Note the dreary color of the headboard and footboard and the low height. Very boring.



I took the bed apart and painted the headboard and footboard black. I decided to create a faux headboard to create some height to the actual headboard. This was a tad difficult since I could not remove the headboard on the hospital bed since it was functional. I decided to create something to sit behind the actual headboard that visually would look like the same headboard.

My initial idea was to create a mosaic glass tile headboard in shades of yellow to match the spread. The goal was the one inch glass tiles would mimic the pattern in the spread. I soon learned that not only is it difficult to find glass tiles, but there was a minimum quantity to order. The most difficult part was that yellow was the hardest of all colors to make so the selection was quite limited. I never found what I was looking for so I went to Plan B.

Plan B involved creating a faux headboard out of bamboo. I spray painted the bamboo a gloss black to match the newly painted headboard and footboard and had Dear Son's Dad attach it to the wall. This creates more height to the headboard visually and allows the bed to remain fully functional.



Here is a picture of the entire bed where you see both the headboard and the footboard.


After I finished the headboard, I labeled the items in his nightstand.


I still have a few more things to do; reline his nightstand, swap out the knobs from pewter to shiny silver ones to match the side rails, but other than that, it's done. I wanted it to reflect Dear Son so the picture above his bed is one I took at the Arboretum last fall. Dear Son loves the outdoors and we love to walk there. At least now, it feels more like a room and less like a hospital bed.

What was most surprising was Dear Son's reaction when I put him to bed. He couldn't stop looking at the headboard and smiling. He got up at 4:15 a.m. the next day and was staring at it. Any time he wakes up and needs his diaper changed, he looks at it and smiles. That's the best part of any makeover. Even Dear Son can see that.

Welcome!

I finally got around to updating the links on my side bar. Please be sure to visit Fat Doctor at her new site of fatdoctor.org. Click on link in my side bar and it will take you to her new site. She moved a while back but I didn't have a chance to update my links. She's one of my favorite bloggers.

Also, please welcome Ryn Tales. Kathryn and Dave are parents to Ellie, a 27 weeker. I hope you enjoy her blog as much as I do. As for Ellie, she's a real cutie pie.

An Inspirational Father Son Story for Father's Day

If you haven't seen this story, I encourage you to read it. This is a story about a son with cerebral palsy, who can't talk or walk, and whose father, who has been taking his son and entering marathons and triathalons for almost twenty years. I have seen this story many times over the years, but it never fails to inspire me.


The son tells his story here titled, "What My Father Means To Me". It's an "emotional tribute to an incredible and inspirational Dad, from his equally incredible and inspirational son." What I love about this story is the son's comment, "When I'm running, I feel like my disability disappears!"

Their goal, "is to educate people about how the disabled can lead normal lives." I think their story is important for both disabled and non-disabed people. In the early years with Dear Son, I wondered a lot, "How do I do this?" or "How can I do things with Dear Son that other people take for granted?" There is certainly a learning curve. While we don't run marathons, Dear Son and I have been walking for years. When he was small, we used to walk outside on a walking trail and he'd let out a scream as soon as I opened the door, since he was so happy to go outside. He still gets excited today whenever we take a walk or go outside to sit in the rocking chairs, only now he starts laughing non-stop to let me know he's excited. It's definitely a lot more work to do anything when your children are special needs; sometimes getting ready to go somewhere can wear you out before you've left the house.

I love this story and hope you will too.

Happy Father's Day to all of the fathers.

A Father’s Day Tribute to Dear Son’s Dad

I was looking through the rack trying to find “the” Father’s Day card, but couldn’t. The signs on the display rack had some categories, as if to help you: funny, spiritual, just another Dad or something like that. I thought it was a bizarre category. I mean, who gets a card, for “just another Dad?”

I began reading the cards and eliminating most of them very quickly. There were kiddie ones from the kids to the father. No, Dear Son was much too old for that. There were funny cards, but Dear Son’s Dad doesn’t like funny cards. And then there were the serious ones, from a son to his father, on how much he appreciates the guidance from his father to get him where he is today or to make him the man he is today. Nope, that doesn’t fit and wasn’t even close. None of them were “it.”

I grew frustrated in my search. This was my one window of opportunity to get a card this week, after I got my hair done. My one window, since Dad was babysitting while I went to the beauty shop. My car is too small to get Dear Son into it any more, or at least by myself. It’s not that he’s that huge, it’s just that I don’t have the room I need when I am lifting him in so I can’t run any errands at all, unless Dad is over to babysit. Plus, it’s June. And that means he’s out of school and I have no babysitter this month. Dad’s nice enough to work with me for the month of June, sitting so I can work and so I can get my hair done.

A woman was standing next to me with her toddler in her shopping cart. She had been mulling over the cards a bit and I happened to mention to her that there wasn’t much of a selection, even though there were lots of cards. She was quick to point out, that it didn’t matter, she just needed a card and she’d be on her way, as if getting a card, any card, fulfilled her obligation. At least she didn’t come empty handed. I thought it sounded almost callous but certainly easy.

That pretty much sums up normal life versus life with a special needs child. It’s always easier. Ask any parent of a special needs what they’d like, and they’ll all tell you the same thing, “I’d like it to be easier.” Even if it’s only easier once in a while, that would be good. But back to Father’s Day.

I find a card, that says some of what I need and buy it. It was between that and the card with Andy Griffith and Opie, Dear Son’s Dad favorite father and son show. He used to sit and watch that show with Dear Son all the time, Dear Son on the couch next to him and Dad with his arm around him. It would particularly get to me when they had the Andy Griffith marathon’s. If I hear that whistle one more time…. Dear Son’s Dad didn’t seem to care though. He’d sit with Dear Son and they watch episode after episode. If I passed by the family room into the kitchen, Dad would whistle to let me know it’s on and then smile. I’d laugh because it drove me crazy and he knew it. I am not much for re-runs of anything. But they were happy and that’s all that counts.

There aren’t any glory days as the father of a special needs child. It’s not like you pay your dues and then you wake up one day and your son has a college degree, a great job and a beautiful wife and kids. It’s not to say it’s not rewarding, it’s just different.

Dear Son’s Dad commitment goes far beyond that. Instead, he’s busy buying diapers, wipes and changing pads, whenever we run out. Not only when we run out, but he’s nice enough to go to the store and get them, since I can’t get out with Dear Son. He works close by but lives fifty miles away. He makes sure though to always take care of Dear Son.

When Dear Son is in the hospital, I typically stay there with him twenty four hours a day and he’ll relieve me once a week, typically on Sundays. That’s because he carries the primary insurance and we have a unspoken policy that his work comes first. Plus, he can’t stand sleeping on that hospital bench, even if it’s only for one day. I work part time so I can care for Dear Son. It’s a few hours a week and just barely enough to make my bills and not much else. When Dear Son’s in the hospital, I try to work unless of course, he’s too sick, which means, that I can’t. He’ll make sure that I have enough to pay my bills, sometimes paying me for that day, so I can stay with Dear Son or paying for the parking for our hospital stays, which sometimes can get pretty expensive. These aren’t fun things, but things he does to make life easier for me and better for Dear Son, so that he’s well taken care of.

This year, with the growth of Dear Son, and my inability to afford a wheelchair van, he’s had to take on the new task of running all of our doctor appointments with me for Dear Son, even thought we are divorced and he lives far away. He has a sport utility and it’s much easier to get Dear Son in there plus there is a lot of room for his wheelchair.

These are just some of the ways, in which he takes good care of Dear Son. But mostly, it’s his unconditional love for Dear Son, a son who can’t give back, a son who can never say thanks and a son who will never be able to wish his Dad a Happy Father’s Day.

I doubt this was the vision Dad had, when we decided to have kids: to have a fifteen year old in diapers, unable to talk, unable to walk and unable to care for even the most basic of needs. But then again, he’s not an average Dad. He’s a great father. A man whose worth is measured by the little things, like a dry diaper and the big things, like taking care good care of your son and stepping up to the plate when the going gets tough. You have to respect a man whose worth will never be measured by his son’s accomplishments but rather by his son’s comfort. There’s no glory in that, but Dear Son sure sleeps better at night. And that’s the difference. He makes life easier for his son who doesn’t even know it. And there aren’t any cards for that. But there should be. Then again, they deserve more than that. They are the unsung heroes, who never get their day in the sun.

Happy Father’s Day to great Dad.

Update II

Since my last update, things started to get better. They made a change and increased his chest PT to every four hours and that made a dramatic difference for Dear Son. It was like he was a new man the next day. They then attempted to get him off the oxygen and went a little too fast and had to go back and increase it a little bit since the oxygen saturations kept dropping. I was hoping he'd be released Thursday morning however his oxygen saturations on room air were a bit low, at times dropping back to 88 or 89, and overall just a bit too low. They decided to keep him in another 24 hours to make sure he could handle the room air just fine and continued the chest PT every four hours.


I met with the ENT yesterday. They will be doing botox injections into the saliva glands to help with his night time choking. As you may recall, Dear Son has a lot of issues with night time choking since he is unable to manage his secretions (this is part of the progressive motor dysfunction/progressive degenerative disease). Normally, when saliva is released in your system, it is pushed into your mouth. When they administer the botox injections, it will prevent both of these, thus hopefully making it easier for Dear Son. He decided against doing the botox and Nissen together (the Nissen would assist with reflux) so that we can better measure the effectiveness of the botox vs. performing them both at the same time. They were uncertain as to how much of his issues were caused by being unable to manage his saliva vs. reflux. My best guess is that 80-90% of his choking is due to choking on his saliva with the remainder being reflux. If effective, botox injections are done every three to four months (it wears off). If we decide later he needs the Nissen, they can perform both the botox and the Nissen at the same time. If the botox is not effective (there are a small number of cases where it doesn't work) or if his issues continue with the botox, we can then talk about the next step, which would be removal of the saliva glands. I am hopeful we would not have to have that done. The botox injections are done once a month at Big Academic Medical Center and require a radiologist present during the injections. This should be done by the end of June and they will contact me once the schedule has been set.


Dear Son is very alert and back to his charming self. I left the hospital today since I had to work today and tomorrow and his Dad is covering and staying with him. Dear Son enjoys that since his Dad has plenty of country music loaded on his iPod.


I expect Dear Son to be released from the hospital today (Friday morning). He will be released with an antibiotic so he can complete the ten day course. I am excited that's he coming home and even more excited that they were able to control the pneumonia before it got any worse.


Thank you for all of your continued thoughts and prayers. It meant a lot to us.

Pneumonia Update

Dear Son is doing better. Since I last wrote, they continued to have issues controlling his fevers and when the fever rose, his oxygen saturation deteriorated and he had great difficulty breathing. My concern was that if the antibiotics were effective in controlling the infection, then I shouldn't be seeing the fever spikes and hence the difficulty breathing. They consulted with Infectious Diseases and they looked at where the pneumonia presented itself in the lungs and then the types of bacteria associated or rather that present in that location. There was some discussion with changing his antibiotics from Ceftriaxone and Vancomycin, to the next level antibiotic that is typically used for Vancomycin Resistant Pneumonias, however they decided against it. Instead, they changed his antibiotic to Zithromycin (this is a much lower level antibiotic). They determined that he had an atypical pneumonia and probably not an aspiration pneumonia, although they can't really rule it out. (This is good news and it was probably community based which essentially means it's a less serious pneumonia than say a MRSA.)



Once he was on Zithromycin, he began to wake up and open his eyes at times. He improved on that but continued to have issues with oxygen saturation; yesterday they changed the antibiotics again to one that covered a broader based spectrum. In addition, they took him off the mouth tent (he was at 100%) and put him on a nasal cannula at 5 liters. Dear Son ran into oxygen saturation issues again at around 2:15 a.m. this morning and his oxygen saturation had dropped to 84%-87%. They made some changes again and it's becoming more stable, and is now in the early nineties. (Dear Son is a mouth breather and that makes the nasal cannula a little less effective for him (in my opinion) and makes him work a little bit harder.) We have yet to get through the night without any issues. He is experiencing some slight issues with vomiting in the last twenty four hours which make it more difficult since it increases the risk of aspiration. Normally, Dear Son is unable to roll over and chokes on his saliva when he is on his back. He is having a more difficult time now since he is weaker and can't manage many changes in position (like for diaper changes) without heaving. I have yet to meet with the ENT. Prior to the pneumonia, we had experimented with some drying agents prior to surgery and I had been in contact with the ENT. Our next step will most likely be a Nissen (to control reflux) and botox injections into the saliva glands.


Today, they'll do another chest xray today and are re-evaluating his oxygen needs as well as increasing his respiratory treatments. Overall, not a serious pneumonia like he has had previously.


As you are aware, Dear Son has MRSA, which he most likely acquired from his multiple hospital stays (versus community based). While he does have MRSA, this is not a MRSA pneumonia-it would only be considered a MRSA pneumonia if he had MRSA in his lungs (that's where it presented last year). In addition, they shared with me that patients like Dear Son who have had "two" MRSA pneumonias, have much weaker lungs than others. They also indicated, that although he had an atypical pneumonia, it could turn into a MRSA pneumonia. At the present time, I am not concerned about this happening since I think he is fairly stable.


In summary, an atypical pneumonia. I spoke with our Pediatrician today and he will remain here until he can sleep through the night and breathe room air. We have a ways to go before we get there since he doesn't seem to be able to manage decreases in the oxygen just yet. His normal baseline is fairly weak to begin with so I suspect we'll be here a few more days since I don't see that happening in the next day or so.


Thank you for your concern and your thoughts and prayers.

Pneumonia

Dear Son was admitted to Big Academic Medical Center yesterday for pneumonia. I called the paramedics at 5 a.m. on Friday morning since he was breathing rapidly and shaking severely from the chills. His teacher had contacted me the day before and told me he had a fever of 99.8 in the afternoon and I began treating the fever with Motrin when he got home from school since it was starting to rise and again at midnight. Although I managed to get the fever down, by 4 a.m. on Friday morning he was breathing quite heavily and hard so I thought I'd take him to the Emergency Room. Before I could finish getting dressed, he began to have more respiratory distress, breathing rapidly and shaking severely from the chills. I took his temperature and it was normal (due to the Motrin I gave at midnight) however I became very uncomfortable and called 911. The paramedics arrived and his oxygen saturation was 88-92%, he was ice cold from the chills/shivering and his temp was normal. They took him to the nearest local ER. Upon arrival, they took a rectal temp and it had increased to 104 degrees. They began treating him however I was uncomfortable and requested a transfer to Big Academic Medical Center. Around 7 a.m. I paged Dear Son's doc and then called him at home. He arranged for the transfer. Due to impending storms, the helicopter was not allowed to fly so he was transported via ALS.



Big Academic Medical Center was able to stabalize him and he's now out of the Pediatric Intensive Care Unit. He has pneumonia. Other test results, include blood cultures, are pending. He is being treated with Ceftriaxone and Vancomycin. He is not vented and on oxygen at 100% so that is good. He seems relatively stable although there is still some difficulty controlling his fever and he continues to work pretty hard at times to breathe. He has been sleeping continuously since this began with the exception of opening his eyes once this morning and once yesterday afternoon.



At the present time, the cause is not known. He has had great difficulty over the past few months with choking episodes at night, that are due to his inability to manage his saliva, which is part of the progressive motor dysfunction and progressive degenerative disease. I had been working with the ENT to exhaust the non-surgical options prior to treating it surgically.



It is my understanding that they will run the full course of the antibiotics so I suspect we may be there a while.



I have extremely limited pc access but I will try and keep you posted.