I received a request in a recent email
and thought my response might be
of interest to all my friends and family
and those who want to know more about
what it is like to care for a child
with special health needs:
'Am realizing as I type, that I have no idea what you're daily life is like, what the challenges you face on a regular basis, what things are "wearing on your spirit", what makes you discouraged, what encourages your heart and helps you move forward......those things all matter to me!
Here is an example of a day in my life.....
Sound asleep in my bed, knowing a nurse is stationed down the hall outside my closed bedroom door. She is watching over Joshua as he sleeps. He is hooked to his ventilator and monitors. Even though it is odd having someone other than your family in your home as you sleep, I'm still so glad she is there because I am completely exhausted; and need someone who knows what to do in case Joshua's tubes come unhooked or he needs suctioning or just to check if an alarm sounds. My husband gets home from work well after we have all gone to bed. When he comes in the bedroom door, it wakes me enough to glance over at the clock - 2:30AM. I think to myself how glad I am that I wasn't waiting up for him before going to sleep. I drift back to sleep, listening to my husband preparing for bed.
The next sound I hear is my alarm sounding at about 5AM... I hit the snooze button a couple of times... before emerging from bed about 5:30. I make my way in the darkness to the bathroom to start my shower and preparations for the day. As I walk out of the bathroom door back into our bedroom, I open my cell phone for just enough light to make may way through to the hallway door. I don't want to wake my husband who has only been asleep for three hours.
Closing the bedroom door softly behind me, I look up into the well lit hallway where the nurse is sitting watch, "Good morning" I tell her. As I walk down the hall, she whispers to me that Joshua has had a good night, his heart rate went back down, so his temperature is probably doing good. We had worried last night because Joshua's heart rate was 120 as he got into bed and his temperature was 99.2. We knew he was a little dehydrated because he was sweating so much - a symptom of his disorder. And when he gets like that, it is difficult to get him to cooperate and drink more. We don't want to push him too much and make his heart race further or get him sweating more in fighting us. So, we allow him to get hooked up in bed and go off to sleep, and hope for the best.
I walk past the nurse, into Joshua's bedroom through his already open door. He is sleeping on the bottom bunk with a blanket hanging down from the top bunk to shield his eyes in case the nurse needs to turn on the lights during the night. I glance over at his monitors and see his blood oxygen level, carbon dioxide level, heart rate and breath rate. All looks well. I talk to Joshua as I reach up to turn on the lights. I come up with any activity the day will hold to get Joshua excited about getting up and getting moving... today, it was that school would be getting out early because of the hurricane coming. Also, he was going to get to visit his science classroom when he got to school early today - which is filled with fun things for the kids to look at and do. There is even a weather station outside the window with a rain guage, bird feeders, a plant to attract butterflies and a temperature guage. The teacher has three computers set up connected to internet websites where the kids can watch videos about life science - for example, a bull frog eating all sorts of other animals - tarantulas, scorpions, other frogs and even a bird! This classroom is definitely Joshua's favorite to visit.
But he does not stir. It is too early for him, and he wants to sleep at least another hour or two. I continue to coax him as I grab his thermometer and take his temperature. It is good this morning - 97.7. I start to remove his pulsox wire from his finger and place the velcro straps that help hold it in place onto a tube of his ventilator for safe keeping. Josh is awake, but reluctant to sit up and move - still wanting to shield his eyes with his hanging blanket. I take a nearby empty syringe and twist it onto the end of a tiny tube hanging from his trach tube and pull to empty the sterile water out of his cuff that helps keep air from escaping from his trach as he sleeps (it makes sure the air goes down into his lungs). He needs to cuff deflated during the day so he can talk. As Joshua finally sits up in bed and I know he is good and awake, I go ahead and turn off and remove his ventilator tubing from his trach. I unplug his pulsox monitor from the power outlet and make sure Joshua does not need suctioning, then take his suction machine and monitor out into the hall to his waiting nurse, who will prepare the items to go to school with Joshua.
After he runs to the bathroom, he must come back and take a special nose spray to help him retain fluids and get himself dressed and ready to come downstairs for breakfast. I hurry down the stairs and get the coffee going, collect drinks and snacks to pack for Joshua to take to school with him, get all his medicines and juice ready for him to take with his breakfast. I put out a bowl, spoon, cereal box, milk, etc. on the table. His nurse sets out his hearing aids and gets everything on his ventilator cart ready. I work on making sure everything is in his backpack and that his sunglasses are handy. Josh comes down the stairs and sits at the kitchen table to eat. I take his hearing aids and put them in his ears as he sits because time is almost run out before the bus will be here.
Today, Joshua wanted to take his police badge, patch and paper from when he was sworn in as an honorary police officer. His special ed teacher didn't realize he was a police officer and commented yesterday that he'd like to see them. So, I got those ready and packed in his backpack. Then, at 6:40AM, one of our little dogs out back barks her special bark as his school bus rounds the corner, our cue that it's time to head out the front door. His night nurse pushes his cart out to the curb and I grab his backpack. Joshua picks up his juice cup and takes it outside with him as he finishes drinking his juice that has his potassium in it. And we all walk out the front door to meet his bus.
His school nurse steps off the bus right behind the bus driver - who is headed to the back of the bus where the wheelchair lift is, to get it ready to load Joshua's ventilator cart. Joshua's night nurse helps get that loaded then goes back inside to gather her things so she can leave. I talk to his school nurse, to fill her in on Joshua's night and any concerns so she'll know if there is something special to keep an eye on. Josh finishes the last of his juice and hands me the cup, then the bus driver, school nurse and Joshua board the bus, a car that has turned the corner stopped waiting for them to move the bus out of the way before it can move on down the street.
On the bus, the lights are on, so I can see the school nurse as she prepares to hook the tubes up to Joshua's trach once he has sit down in his seat near the back of the bus, and the bus finally moves away from the house - the waiting car hurries down the street, and Joshua's night nurse climbs into her car to follow the bus off our street - she is headed for her home all the way across San Antonio from our house. I wave goodbye to them all and turn to walk back inside. Phew!
Steffany, my little sister, Amanda and my husband are all still upstairs in their separate bedrooms asleep. Steffany will be up soon getting ready for school. Amanda would normally be getting up soon afterwards and readying herself for either work or school (she is in college - her last semester before graduating). But today, Amanda is sick and has already called in to work to let them know she will not be in.
Now, I clean up after the breakfast dishes, and flip on the tv to find out the latest on the hurricane, then head over to the computer to check emails, etc. I have almost two hours until I have to leave the house and head over to the home of a little elderly couple - the parents of a woman I go to church with. The elderly woman - in her early 70s - has a trach, too, but it is due to her osteo-arthritis which has worn down her bones and cartilage so badly that she can no longer walk, can barely use her hands and her windpipe and been nearly been crushed. Her husband - ten years her senior - is in better overall health but still gets around with a walker.
I care for them in their home from 9am until about 1:45pm. I help Mrs. Weaver use a bedpan, clean up afterwards, move her from her bed to a special chair that lays out into a stretcher, take her into her kitchen, flip on the tv and fix myself a small breakfast (she is disappointed if I don't eat something there).
After I eat, and get her a drink, I do (by hand) any dishes in the sink, swiffer and sweep and sometimes mop all the floors in her 2 bedroom home. I visit with them both, watch some tv with them, prepare to cook lunch, then get her back to her bed by 11AM. I help her use the bedpan again, suction her trach, hook up her breathing treatment for her - and I should mention I arrange her pillows - that is a big job with her because they have to be EXACTLY right or they cause her extreme pain. I cook lunch and my husband comes over to eat with us before he heads off to work (the Weavers love to have him come eat with us so they have someone else to visit with).
Today, Joshua gets out of school at 11:45AM, so I've asked his bus driver to bring him over there to drop him off today - but normally, he gets out of school at 2:30 and I have to be home in time to see him off the bus and get report from his nurse there. On most days, that begins the hours and hours it takes to work with him on his homework. It's not that there is so much but that Joshua has a very difficult time understanding it. But he is determined to finish everything the teachers ask of him - even if it means he falls asleep at the table doing it or if it takes him ALL afternoon and evening to finish it. I've expressed my concerns with his teachers about this and they are working to find the right amount of homework for him so it doesn't take up the whole rest of the day at home to get it done.
I also daily go to the post office after I leave the Weavers' house (the post office is a few blocks from their home and on the way to ours) to check Joshua's post office box. As his birthday nears (September 19th he'll be 12) there have been more cards in his box. Many days, he gets nothing - and he is disappointed. If he was able to spend the time to write back to some of the people who have sent him cards and letters, I'm sure there would be more. But he has such trouble with handwriting and spelling that I haven't pushed him too much with that task. And, finding a place to keep all the mail he has gotten in the past is an issue - he hates to throw anything away!
Today, we will meet with a new nurse just hired to come stay with Joshua in the afternoons. She will officially start on September 22nd. But we have been without an afternoon nurse for some time. And the last one we had really had no clue about his ventilator, etc. so Joshua didn't trust her and was ready to get rid of her despite the fact that she was a nice enough lady. She did have a way of getting on your nerves, trying to finish every sentence you started - even though she didn't really know what you were trying to say. But, if I am ever to work a normal job where the pay is enough to make a real dent in our debt, I need there to be a nurse here with Joshua who actually knows what she is doing.
Joshua's night nurse arrives at 9PM, which is our cue to get Joshua's growth hormone shot pen out and give him his nightly injection. Then, we head up to start Joshua's trach care and preparations for bed. We take his temperature, brush teeth, say prayers and hook up his monitor and ventilator tubes and try to have it all done so Josh can drift off to sleep by 10PM. Then, I usually visit with his nurse for a few minutes before heading down the hall to my bed again.
Joshua is scheduled to get a MRI of the brain and three sections of the spine - all under general anesthesia - and a test called BAER - all in Houston on September 24th. I have to call and arrange transportation help from Medicaid. That is a pain because it means at least an hour on hold on the phone to get through to them. Then, I have to pick up the money they send at Western Union. And once we have gone to the hospital, we have to get a doctor's signature proving we went to the appointment they sent us the money for and fax that form back to them. We usually don't get the form until AFTER we've gone to the appointment, so it makes it harder to get that signature. But we have to do it or we will not get any help for any future appointments.