A DAY IN HIS LIFE...

*note: click on any word in yellow italics for more information

I thought I would take this post to write what a day in the life of my son is like. Consider this an educational post rather than an emotional one. It is important for Caden's readers to understand what all goes on in order to properly care for our son; to know what has worked and more importantly, what hasn't; to take a glimpse into his world and possibly to even see it through his eyes.

Caden typically wakes up on his own anywhere from 5 a.m. to 7 a.m. On those very rare days where he sleeps through the night and is still asleep when I wake, I panic. I jump out of bed and go to his room to make sure he is still breathing. That usually gets him up.

I can only imagine how Caden feels when he awakes. He is usually on his back which means at some point during the night he flipped from his side. Caden can not adjust himself to get comfortable. There is no tossing and turning for Caden as he can do very little on his own. Often we find him lying on his pacifier and there have even been times we have found him face down in his mattress. Because Caden has what is called emotional lability (Pseudobulbar Affect), he usually can not properly express himself when in pain or uncomfortable. We have found him with imprints of his pacifier on his back but because he doesn't cry or yell out to us, we have no idea.

So here Caden is lying in his bed, visually impaired to the point where his Opthalmologist said his visual acuity is 20/2000, waiting for us to get him.  Sometimes he "coo's". Sometimes he screams. But most of the time, he just lies there. I often wonder if he is daydreaming. Boy, I hope so.

When we get him he is brought downstairs and the chaos of the day begins. Whether it is his nurse or myself carrying out his daily routine, organization, timing and planning are the key. His blenderized food (which takes me two hours every weekend to make for the week) is heated up, his medications are prepped and his supplies are neatly laid out.

His morning routine usually takes anywhere from 45 minutes to an hour. Because Caden needs to lay flat when being given medications and food, I usually place him on his back on our living room carpet. With supplies close by, I get started. First, of course, his diaper is changed. Next, I give him his inhaler. Because he has bronchopulmonary dysplasia, he requires two puffs of Flovent twice a day to help keep his lungs clear and to help prevent  infection. When Caden is coughing or wheezing his Flovent is increased and we add Albuterol to the mix. This helps to clear his lungs and keep him out of the hospital. I then brush his teeth.

Next Caden gets his nasal spray (Ipatropium Bromide). This helps with congestion and to open up his lungs. Then his G-tube dressing is cleaned, an antibiotic cream is applied to the site to prevent infection and a dressing is placed around the tube.

Caden's dressing change materials

Now we get to the medications. Before Caden can be given anything in his G-tube, he must be vented. He does not like this but the alternative is severe abdominal pain and an increase in vomiting. When venting Caden, I must push on his stomach to try to get the air bubble out. This can sometimes take several minutes and cause him some discomfort.

Caden gets five a.m. G-tube medications:

Baclofen - Helps with his spasms due to cerebral palsy. It is a muscle relaxant.

Neurontin -  Used to treat neuropathic pain. In other words, it is a pain killer (similar to Lyrica)

Periactin - An antihistamine known to help increase appetite and extend the stomach to help reduce vomitng.

Bentyl - Treats irritable bowel syndrome

Zantac - Blocks stomach acid

Caden's medications minus his inhalers and PRN meds

Then, if Caden keeps the medications down with out vomiting, it is time to eat. 120 ml of a blenderized diet consisting of gluten free, casein free, whey free super healthy foods is pushed into his stomach via G-tube with a large syringe. The food must be pushed slowly in order to reduce the chances of him vomiting. After his feed, his feeding tube is flushed with water to prevent clogging.

Caden's food and feeding supplies

Caden has to remain flat for about a half hour which I know makes no sense but because of his dysautonomia he is more likely to vomit upright than when laying flat. If all goes well, I get him dressed.

Then he gets a break. If it is during the week he gets on the bus with his nurse and heads to school where he will have a jammed pack day mostly consisting of one therapy after another. Caden receives physical, occupation, speech and feeding therapy at school as well as outpatient after school. On average, Caden gets about eight to ten hours of structured therapy a week. This does not include what is done at home.

Caden, in his Kid Kart, making my day (with a little help from his nurse)

If it is the weekend or if Caden does not have school, his nurses will put him in either his gait trainer or stander to help with strengthening his legs. If tolerated, Caden can usually be in either the gait trainer or stander for up to an hour. Sometimes, Caden is brought up to his therapy room. This is a room in our house which was once an office but I turned it into a room full of very expensive home therapy equipment. 

Caden in his gait trainer

Now I know you may be wondering when Caden gets to play. Pediatric therapy, for those of you lucky enough to not have to go, is centered around play. Caden is not put on exercise machines or given therapy bands typically done in adult therapy. Caden plays on a ball, plays with toys, works with sensory stimuli, uses a computer to help learn how to communicate and goes on a therapy swing. Because Caden has difficulty playing on his own, he enjoys when his therapists, nurses or myself, engage him in therapeutic activities.

Caden's therapy room

We just started therapeutic horse back riding for Caden. Although not covered by insurance, it is sure worth it because not only does Caden enjoy it, but it helps to strengthen his neck and trunk, both of which are very weak. 

Caden loves horseback riding

Caden requires four feeds a day with three water boluses in between so at about 9:30, Caden gets 120 ml of water. Mixed in with his a.m. water are Mirolax, a probiotic, a multivitamin, vitamin D and calcium. At 10:30, Caden is fed again. Usually after that, he takes about a one hour nap.

He is given another water bolus at around 1:00 and a feed at 2:00. With his two o'clock feed he is given another dose of Baclofen, Neurontin, Periactin, Bentyl and Zantac.

Another water bolus is given at around 5:00 p.m. and his last feed at 6:00 p.m. At this time we also begin his night routine. Every other evening he is given a bath using his bath chair. He loves taking a bath which is wonderful because many children with cerebral palsy dislike bathing.

Caden's bath chair

A new dressing is applied to his G-tube sight and his inhaler is given. Along with the Ipatropium bromide nasal spray, Caden gets Nasonex in the evening. This helps with his allergies and congestion. He gets another dose of calcium and is given an evening dose of Zyrtec (allergies).

At around 7:00 p.m., Caden is given a rectal glycerin suppository. This is a necessary evil but without it, Caden would be up all night with intestinal pain. The suppository helps relieve gas and aid in constipation.

At around 7:30 p.m., Caden gets his bedtime medications. They are the same as the morning medications, with slight changes in dosing. In additional to these medications, Caden receives Melatonin (a dietary supplement to help with sleep) and valium (a controlled substance used as a muscle relaxer and to aide in sleep).

Many of Caden's PRN meds

As far as what has been done in the past, Caden has been on many medications that haven't helped (Bethanechol, Mestinon, Erythromycin, Reglan, Prevacid, Nexium and I'm sure many I have forgotten). We have tried all methods of feeding him (J-tube, pump continuous, every formula imaginable, gravity boluses and a pureed diet). We have altered schedules, increased medication doses, attempted various feeding positions and tried every combination of everything possible. We have yet to find what works best and because Caden does not have a clear cut diagnosis, we continue to play the guessing game.

So anyway, after a busy day, if I am lucky enough, I get to hold Caden against my chest as I feel him drift off to sleep. Very often, this is the first time I get to be with my son all day. With nurses, work, school, therapy, chores and two other very demanding four year old's, I often don't have the time to be with him. It saddens me that the most time I get to spend alone with him is when he is in the hospital. So when it is not my turn to put the other two to bed, I enjoy every second of his warm, tired, weak body against mine. I smell him like I would a newborn (I swear he still has that newborn smell); I rub his back; I feel his breaths; I listen to his heartbeat. 

And it is then...that I find peace

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