Suction Machine Update & Dental Visit Tomorrow

The home healthcare agency came out today and replaced the suction machine. The one I had was defective. I did have it set up properly though so that was good. The new machine works great.

Prior to coming, I told Dear Son that they were coming out to fix his machine. I told him that when he was choking I could take the tube and go "bzzt" and get the saliva out for him. He smiled when I told him that. I have to try to create some excitement when we get new equipment so he'll let me use it on him.

After the tech left, I tried it out on Dear Son. He was a little startled by the noise however he did let me in his mouth enough to get out some saliva.

We'll see if he is as eager to let me in his mouth after I take him for his dental check up tomorrow. He seems to have a lot more gum overgrowth, along with extensive growth on the roof of his mouth since his hospitalization last November. He is not on any medication that should cause this, so we'll see what they say.

We see a dental group that is affiliated with a big city hospital. They take care of mostly Medicaid children and poor adults with multiple mental and physical disabilities. It took a while to find a dentist who could see a child like Dear Son but I found this group over ten years ago. I had tried three other dentists but none were able to care for Dear Son. It is amazing to go there. Every patient has significant impairments and that is the only type of patient the dentists see all day. Can you imagine that? It's quite impressive. They have dental students there as well since it's a dental school. What's great too is that it's right across the street from the hospital. This is important since if the patient ran into issues during a procedure, they could wheel him across the street for an emergency. Something to think about when you have a special needs patient.

The dental school is very well run however. They group their days by visit type so one day a week they do all cleanings, another day all fillings, etc. Some special needs patients have to wait several months to get a cavity filled because this is one of the few places that know how to take care of people with severe disabilities. The average dentist can't manage a patient like Dear Son even if they say they take children:) It's also tough because many of these patients don't have dental coverage or their families or caregivers never took them to a dentist. Unfortunately, dental health falls to the wayside for some families in light of the patient's more pressing issues.

We go for a visit tomorrow and then after that, they'll set up a teeth cleaning for Dear Son. To get a teeth cleaning, there is typically a six month waiting list and they won't see the patient until they have a preliminary appointment like we do tomorrow.

To clean Dear Son's teeth, they typically put him under a bit. It's very challenging because they clamp the mouth open and won't allow the patient to close their mouth until they are done. It's pretty uncomfortable and I don't know that he can do that anymore. The last time he was crying out while they did it and it was very hard on me to sit in the waiting room and listen to him cry. (They also typically tie the patients hands down and I don't allow that. After all, I wouldn't want it done for me and I don't allow people to do any procedure to a special needs child that they wouldn't do to a normal child.) When you or I go to the dentist for a cleaning, they don't clamp our mouth open. When we go, they'll take out the suction device and allow us to swallow or to reposition ourselves but for the special needs kids, they keep them clamped open since it's too hard to get them re-clamped again. I don't like that part really and find it enormously stressful. Dear Son's never had a cavity in eighteen years though. We had an appointment last year and had to cancel due to his hospitalizations.

Aside from the clamp, they do a great job cleaning the teeth. The anesthesiologist is pretty good too. I felt really confident when I met him since he wasn't fazed at all by the number of medications Dear Son was on. After all, most of their special needs patients are on a lot of meds. I was able to have his teeth cleaned previously and had sealants put on all his teeth.

Thank you for all of your comments on the suction post. I really appreciated your support.

Suction Pump Aggravation

Dear Son's been choking a lot tonight so I pulled out the Devilbiss Homecare Portable Suction Machine that I got a few weeks ago. I checked it out when I first got it however there weren't any instructions included. Why a homecare company send out a machine without instructions is beyond me. Anyway, since he was choking so bad, I got up at 1:40 a.m. to go on-line to find the instructions. I was able to download a pdf file however the machine still does not work. It appears I had connected everything properly however I don't have any suction on the machine. I can't quite tell if the knob is off on the side or if that is how the unit comes. It looks as if it's missing the knob however when I compare it to the photos in the instructions, it looks as if there isn't a knob there either. I can turn it though however I can't get the guage to increase and the guage controls the suction. I wish now I had watched this a little closer at the hospital. I hate this kind of thing so I typically look the other way.

The machine is rather noisy. When I got the script for a machine, I requested the smallest machine that was available. I don't have a lot of room here and when they write a script or order equipment, you have to specify what you want or you typically get older models or older equipment. (Typically equipment will be on a rental basis and convert to a purchase once the rental costs is equal to the purchase price.) I should have requested a small, quiet machine.

Dad had taken Dear Son Saturday night and brought him back today. He was discouraged because Dear Son was choking all day and couldn't clear his throat.

Around 2:15 a.m. I decided to check the medication sheet that I created to see if Dad had changed Dear Son's scopolamine patch. The patch needs to be changed every three days otherwise Dear Son can't clear his airways since the patch is no longer working to dry up his secretions. I write the date the patch was changed and the next date the patch is due to be changed. It appears Dad forgot to change the patch on time which explains why Dear Son was struggling on Monday. He had a copy of the sheet with the dates on there but this happens sometimes. I won't know for sure until I call him in the morning but I changed the patch now just in case. The effect is not immediate since it's time released but it should help him in a few hours. I read about how the patch releases the medication a few months ago.

Sometime, later today, I'll call the homecare company and see if they can send someone out to show me how to use this machine. It's very aggravating at times like this when you need to use this equipment and you can't get it to work.

This is especially aggravating for me since I really hate nursing. I don't want to be a nurse nor do I enjoy suctioning. I agreed to this machine only because I figured there would come a time I would need it and I was hoping perhaps that I could stomach doing this job to help Dear Son. I am only considering suctioning his saliva in his mouth and not any deep suctioning. I can't stand that. In the hospital, the deep suctioning drives me crazy and I typically won't let them do this. I worry that it's painful, shoving that tubing down him (You saw the bloody pictures I posted the last time they attempted it!). I understand why it needs to be done, I just don't like it.

It's really uncomfortable too, because I feel so much pressure to have to do this. The doctors and nurses can't fathom why I don't like this. They seem to feel it's something that isn't a big deal and that I should do it. I absolutely hate it. I don't think that just because I am the mother to a special needs child that I have to love all of this medical stuff. There comes a time when you just reach your limit on what you are willing/capable to do. Now I certainly love Dear Son and I think that I go to the ends of the earth for a lot of things for him. You will never hear me complain about changing diapers or taking good care of him but we all have things that we don't like to do and this is mine.

So it's 3 a.m. now and I am off to bed for a half hour or so. Dear Son has a 9 a.m. appointment in the morning so I need to start his g-tube feeding at 4 a.m. so it will be done by 8 a.m. I should probably start it around 3:30 a.m. to give myself a little more leeway but Dear Son has school today, if he's not too tired. Our appointment is at 9 and the bus comes at 11 a.m. to take him to school for 3.5 hours. If I start the feeding too much earlier, he'll be hungry before lunch. Somehow I don't think that he'll be up for school but we'll see. He went to school last Friday and had his eyes closed already while he was loaded onto the school bus. On the way to school, his aide said that he started crying and tears were streaming down his face. She asked him why he was crying and told him that it would be o.k. and that he'd have a great day. Apparently, that cheered him up and he stopped crying. In 18 years, Dear Son has never cried going to school. I worry that things are taking a toll on him and that it's exhausting him.

Update: I checked with Dad this morning and he forgot to change the patch. That happens sometimes.

Also, I received a comment regarding the fact that I shouldn't state that I hate suctioning or nursing. I have clarified that in the comments section. A better way to verbalize that would be to explain that I have a terribly weak stomach and suctioning is upsetting to me. It's embarrassing to me to have to explain this to people when they've made assumptions that I should be o.k. with all aspects of nursing since it's my child. The fact is that not all of us are capable of doing these tasks.

Playing Possum To Get Out of Housework?

Image courtesy of Martha Stewart~She recommends using a cutting board for perfect folding.

Dear Son started attending school two, half days last week. Last Tuesday, one of his jobs at school was to fold towels. I wasn't sure how he could do this, since he has little use of his hands and arms, so I had asked one time, how he did it. Apparently, they place the towel on the tray of his wheelchair and he uses his right forearm to shove one end of the towel towards the other.

Well, Dear Son wasn't too excited with the prospect of folding towels so apparently, when they brought the towels over to him, he conveniently fell asleep. Unfortunately, as soon as they removed the towels, he woke up so they thought he was "playing possum" to get out of folding the towels. This was a good strategy on Dear Son's part and was very effective when he used it once last year to get out of shredding paper. He closed his eyes when they turned the machine on and then opened them when the shredding was all done. After he got off the bus last week, his CNA, who is also his bus aide, told me the story about Dear Son playing possum when it came to folding the towels. We had a good laugh and I teased Dear Son later about playing possum and told him that I didn't think that men liked folding towels. He smiled.

Fast forward to yesterday when they brought the towels around at school. He decided to play possum again however as soon as he closed his eyes, his CNA whispered into his ear. She said he didn't need to "play possum" to get out of folding the towels. She said that she would do most of the work to help him and that it would be easier. Apparently, negotiation works for him. He opened his eyes and smiled at her. She helped him with the towels and he was able to move his fingers slightly when he was ready for her to give him the towels.

Disappointed...

I had Dear Son's IEP yesterday*. This is the Individual Education Plan (IEP) that is created annually where we define Dear Son's goals for the following year. We were all gathered at the meeting when someone asked about his Make a Wish trip. I said that he had been approved to go and that all of the arrangements had been made (hotel, air, etc.). His teacher asked for the dates. As it turns out, the week we are going on our trip is during Dear Son's high school graduation. He will miss his graduation. I couldn't believe it.

When Dear Son got sick in November, I had a conversation with his teacher and I asked her to keep me informed about two things: his yearbook and graduation. Also during that time, it came time to order his cap and gown and she gave them his sizes since we were in the hospital. As you know, Dear Son was out of school for months and has only attended three, three hour sessions to date. During this time, I had signed up and was receiving a daily e-mail from school regarding school activities. There was no mention of graduation.

When I got the approval for our trip, I checked with Dad's work schedule for dates; we had a few weeks to pick from. Since I am self employed, I can adjust my work schedule accordingly. I assumed high school graduation would be in June and not in the middle of May (Yes, I know many college graduations are in May but this is high school.).

I am really disappointed. I had Dear Son's graduation picture taken last summer in his cap/gown. We don't have any other events planned for Dear Son for the entire year and yet graduation is the week of our trip.

I know for many people this may not be a big deal. But for a parent of a special needs child, it is, or at least it is for me. Dear Son doesn't have a lot of milestones in his life. It's not like there will be a college graduation, a marriage, a first house or any babies. There isn't any driver's license to be had. There just aren't a lot of milestones. As a parent of a special needs child, I just want the things other people have. I want to celebrate a graduation. I want to see him all dressed up. I want to see him go across the stage and get his diploma. I want to see him with all the other kids that he went through school with and get the diploma. That's what I want for me. And for Dear Son, he'll love it when everyone is there and all of the hoopla around the event.

This is high junior high graduation. You can see him in the stone colored pants at the far end of the photo.

But graduation is only an hour or so. The tickets have been purchased for the trip and they already did this once for us. We are fortunate to go and I can't ask that they reschedule again. I don't want to complain that our trip is scheduled the same time as graduation. That's known as a high class problem when you have the opportunity of a trip of a lifetime and something else at the same time. You just can't go there.

All dressed up for his 8th grade graduation.

I will however miss this. Back in 2006, Dear Son had a MRSA pneumonia and nearly died. He was on a ventilator and we got out of the hospital and had only been home a week when his eigth grade graduation came up in early June. I had asked the doctor if it would be o.k. if we could go but he didn't think that Dear Son was well enough. Well, I decided to get him dressed up anyway and we went. I thought if he died, I wanted to see him graduate. The whole thing was about an hour. I took pictures before we left and it was exciting to see him go across the stage and get his diploma. Actually, the wheelchair kids weren't on the stage but they came down to the main level to give them their diplomas and it was really exciting. We were in the first row. Afterwards, I took pictures of him and his classmates. It was good to see all of the kids together. They went to elementary school together, then junior high and now high school together.

Here is a picture of his teacher (in the white skirt) and his classmates.

So it's unfortunate that it won't happen. As Dear Son's mother, I've seen how hard he has worked over the years to earn that diploma. While special needs kids don't graduate with the same knowledge as regular kids, they do have an education plan and they have worked hard as well.

In the end, we'll have a good trip. I'll keep my focus on all of the fun things that we'll do in Florida. Those will be things that will be important to Dear Son. My goal before he died was to see him happy and that's what we've been given the opportunity to do. It's a once in a lifetime opportunity and once in a lifetime trip and we will make the most of it. It will be good to pack for a trip instead of the hospital. In the end, I suppose it really won't matter so much that we missed his graduation. I just wish it could have worked out a little differently.

*Post was written on Wednesday.

Fading Away...

I wrote this post last week and thought you might enjoy it.

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I remember Dear Son sitting at the daycare center getting ready to kick the ball. Dear Son, sitting on the floor, his right knee up and his left foot and knee on the floor, in position to kick the ball. The daycare worker was less than five feet away, ready to roll the ball over to Dear Son so he could kick it. Dear Son was ten at the time, and for most kids, they’d be kicking a ball elsewhere by now but he rather enjoyed sitting there ready for action. He’d lean back somewhat on his hip with his hands in the air, not really contributing to his balance at all, just hanging out in the air somewhere, oblivious to the rest of his body. I laughed to myself as I looked at the daycare worker, knowing that she was seriously underestimating Dear Son. I could either spoil it for Dear Son by telling her to back up or give him the pleasure of winning for a change. I choose the latter. The ball rolled forward towards him and he smiled in anticipation. In one fell swoop he belted that ball as hard as he could straight at her. Normally, he hits them right in the gut because they are typically standing way too close but this time, she dodges the ball and has to run far to get it. He laughs heartily. If there is one thing about Dear Son, he has a great laugh and a great smile. It’s times like this, that well, he is perfect.

Dad was reminiscing about Dear Son, about the times he used to kick the ball with his foot. He wished he could do it again and suddenly, now that Dear Son can no longer do those things, he has to deal with the ugly reality that things won’t ever be the same. It happens more often now, remembering back to when he walked on his knees in the kitchen when he was hungry or scrambled towards an open door walking on his knees as fast as he could to try to get outside before you could “catch” him. All the while, he had a big smile on his face. He was the happiest kid in the world. You couldn’t help but love him.

Dad was reminiscing after I told him about our day. I took Dear Son out for a small walk and then after our walk, we sat outside for a bit. I tried massaging his left leg to help with his circulation. His left foot and calf are always swollen now and we’ve dubbed the left foot, his “brick foot”, due to it’s height. Massaging his leg is tough, because it’s so hard. It doesn’t move when you try to massage it. I gave him a short massage, then worked on moving both of his feet, moving his toes and doing just about anything to help him get some circulation going. I tried some leg extensions to stretch his muscles but everything was just so tight. I talked to him about moving his legs, but he couldn’t move them at all. Finally, I took the footrests off of the wheelchair and took a giant therapy ball and rolled it towards him trying to get him to kick the ball with either foot. It was windy outside and the wind move the ball more than he did. It was hard to tell if there was any movement at all in his feet, however I decided to err on his side and congratulated him for moving his feet. I worked on rolling the ball towards him and asking him to kick the ball. We did this a bunch of times and then I’d step back requiring him to kick it further. I kept teasing him that I hoped I wouldn’t have to run after the ball hoping he’s somehow give it a swift kick like the good ol’ days however that never happened. Typically, if I said something like that, he’d always respond and give the ball a swift kick.

My days feel a lot longer now. I feel as if I am in a race against time, where Dear Son is concerned. My goal is no longer on how to move forward but how to slow down the regression. Suddenly, I am working hard putting on his arm braces to slow down the contractures of his hands. I am working on trying to improve the circulation in his legs and feet. I am putting a pillow under his foot when he sleeps to ward off pressure sores. And when I finally lie down to sleep, I count the seconds between his breaths…one one thousand, two one thousand…six one thousand…then I ask him if he’s o.k., as if he can answer me. I listen some more but there is nothing…fifteen one thousand…and then I yell out, “breathe” hoping that he will hear my voice and suddenly breathe. I hear him take a breathe and then start counting again. Some nights, I am up every two hours to turn him over and other nights, he sleeps longer. I pay the price the next morning when I see a red spot on his foot. I know I have to get up and turn him over even if he doesn’t wake up. I can’t let him get a pressure sore.

So the days go on like this. It’s a lot to do now and some days, I am pretty exhausted. And apparently, so is Dear Son.

But there are also pockets of great joy in our days. Today, after four days, he finally gave me a kiss. He thinks it’s funny sometimes, to make me wait and count the days. Even his kisses have deteriorated. He used to take his tongue and lick my hand to give me a kiss. After a while, he couldn’t do that so he would take his head and hit my hand. It was more like a “head butt” but still it was cute. Now it’s barely a whimper. He can hardly move his head to touch my hand. It’s odd in many ways to watch his skills fade away. They kind of sneak up on you and when you finally notice, it seems like just yesterday when he could do “x” when in reality, it’s been years.

I often wonder though, what he’s thinking now. Just tonight he was lying in his bed, as I got his dinner meds. The windows and doors were open in our house and you could hear the children playing outside in the play area. They were noisy and loud and unlike other days, they stayed longer since it was unseasonably warm today. I wonder if he remembers what it was like at the daycare center, sitting in the dirt hole on a beautiful day, playing in the dirt with his face to the sun. I wonder if he misses that or if he wishes he could be outside with the kids, watching them play and hearing them laugh.

It’s interesting how people fade away. You think that one day they have the skill and the next day they won’t, but it doesn’t work that way. Instead, it’s a long, slow process. They lose their skills the same way they acquired them, little by little. I remember waiting for the day that he could walk in his walker. There is no specific day. Instead it comes gradually. It’s the same way now, he just kind of fades away.

But as his physical skills deteriorate, there is still one thing that he can do that brings him joy. He can hear and he listens. Today, he smiled as he heard me sing an old nursery rhyme to him. He loves to hear me sing and not only does it relax him but he smiles. On the days he goes to school, I sit in the rocker and he sits in the wheelchair as we wait for the school bus and he always seems to enjoy it when I tell him to listen for the birdies singing. He stops and listens and then smiles when he hears them sing. And on the days that it rains, I open the window in his bedroom so he can hear the rain coming down. And when the cat meows, he gets a big smile on his face because he knows the cat wants to give him a kiss. As I looked at my Dear Son today, I realized that he knew the secret to a good life. You can’t focus on what you don’t have, but take pleasure in the gifts you are given.

Note: Dear Son is 18 years old and suffers from intractable seizures, dystonia and severe mental retardation as a result of a random mutation of the ARX gene. He also has a progressive neurological disease.