(Now that's an outfit...OH.....IO!)
A lot of people have been asking mommy what a typical day is like for you at home so I thought I would start out by briefly running through one. I also thought it might be nice to document what life is like right now and then compare it where we are in a few months.
-5:40am Mommy gets up (Daddy is already long gone for work and the gym, that's beyond early).
-6:00am Your nurse Stacy leaves if it's Monday-Friday morning (if it's the weekend either mommy or daddy have probably camped out on the air mattress in your room).
-7:00am You get some medicine in your G tube and mommy mixes up some milkshakes for you (we fill these up every 4 hours around the clock).
-8:00am You get 4 medicines through your G tube and your eye ointment. You typically wake up about now and need lots of suctioning for the next hour or two as you get things moving. You like to play quietly by yourself when you first wake up which gives mommy a chance to drink her coffee and stock up on all the supplies we will need for the day.
-9:00am You get one G tube medicine, your injection (blood thinner), and then mommy cath's you.
-9:00-11:00am We play, do our stretches, work on your therapy exercises, clean your G tube site/dressing, take a sponge bath and get dressed for the day. We also do one of your hour windows off you vent during this time and try to wear your hearing aide on days that mommy is able to keep it in your ear.
-11:00am Grandma and Mommy do your trach care
-11:30am You take a nap (sometimes this is a real nap other times its a 20 minute power nap). Grandma usually hangs out with you during this time and plays with you if you're awake so mommy can shower and eat something.
-12:00pm You get 3 more medicines in your G tube and eye ointment
-2:00pm We typically move from your room into the family room and before long daddy comes home. You and daddy play together and do some work on sitting up, reaching and other important things. Together we all play on the floor, sit on the couch, spend a little time in your swing or bouncy seat and do whatever we can to entertain you which more often than not results in us being entertained. You usually do your second hour window off the vent sometime during the afternoon and on good days we try and give your hearing aide another go.
-4:00pm You get some medicine to help you go to the bathroom which results in you promptly blowing out your diaper plus you get some more eye ointment. Most days you take a little power nap around this time. By now Grandpa is home from work and dying to get some play time with you.
- 6:00pm The Connor train moves it's way out to the kitchen where we set up camp for dinner. You usually play quietly and watch us all eat dinner besides needing suctioning here and there. After the grown ups finish eating mommy and daddy try and do your tastings as part of speech therapy.
-7:00pm You get one G tube medicine and we head back to the family room after changing out your feeding bag for the day.
-8:00pm You get 4 G tube medicines and your eye ointment. During the next hour we take turns hanging out with you (trying to keep you awake and happy) while getting the night chores done such as changing out the suction equipment and cleaning it, changing out part of your ventilator, thawing out milk and making bottles for the night and cleaning up our mess from the day.
-9:00pm Time for your injection again and cath'ing (usually daddy does this). Then off to bed you go. Sometimes you fall asleep instantly and other nights it takes you a while to drift off. On those night we try and read a book and cuddle. Although it may take a bit to get you to sleep you almost always sleep well through the night once you are asleep.
-10:00pm Your nurse Stacy gets here so mommy and daddy fill her in on the day and then try to get some sleep ourselves.
-4:00am You get 2 G tube medicines and more eye ointment.
Right now that's a typical day in the life of Connor assuming you don't have any doctor's appointments (you average 3 a week) or any therapy sessions (right now the therapists come to our house 2-3 times a week). We are starting to learn how to juggle your schedule around appointments, naps, and the million other variables that change on a day to day basis. Luckily Grandma and Grandpa have been an enormous help to mommy and daddy so with some team work we haven't missed a beat yet. You also have a day nurse two days a week that is also a big help. Her name is Zion and you seem to enjoy hanging out with her. This week your full time day nurse starts so that will be a big help and adjustment for mommy and Grandma during the day. It's kind of hard to keep up with all your daily care, the phone calls, appointment scheduling, insurance crap not to mention regular things like laundry when all mommy really wants to do is play with you. We are already getting more efficient with everything so I know over time this will all be very routine for us. Plus in time there will hopefully be less and less medicines, appointments, and procedures making the days easier and easier.
Speaking of appointments you got an A+ from both your pediatrician and cardiologist this week and you were a champ during both appointments (which is impressive considering one was at 6:45 am and you had to get stuck twice for blood work). Your pediatrician, Dr. Fletcher was thrilled with how well you have adjusted to home life. You have gained a little weight since you've been home, done great with your windows off the vent and all of your blood work is stable. We sure feel lucky to have Dr. Fletcher and his whole team on your side. They are amazing at keeping all your issues sorted out and coordinating the billion specialists involved in your care. Your little heart got the stamp of approval from Dr. Hirsch at your cardiology appointment. He repeated what an amazing little boy you are and he couldn't be happier with how your heart is working. He said your repair is excellent (thanks to Dr. Morales) and although we have to keep an eye on one of your valves your heart is much lower on the list of priorities that need attention in the near future. Awesome news !
(You played contently for over an hour on the doctor's table)
We did have one pretty rough day this week. On Wednesday you weren't yourself at all. You were spitting up, had a little fever, were very restless and your heart rate was much higher than usual. Your nurse Zion was here during the day and she was pretty worried about you. Mommy was hoping with all her might that you would settle out but as the day went on things seemed to get worse and worse. Twice mommy actually packed the car thinking we would be heading down to the hospital but you pulled through and we were able to stay home. Mommy is so thankful for one of the nurse practitioners that works with Dr. Fletcher. Her name is Wendy and she called every two hours to check on you and give mommy orders for what to do to keep you home. We still aren't sure if you had one of the many stomach bugs going around or if your yuckiness was a result of withdrawling from your clonidine patch. So for now you have the patch back on but we'll get rid of it before long. Although Wednesday was pretty rough by the crack of dawn Thursday you were back to your old self and flashing smiles at everyone in the cardiology office.
All in all mommy and daddy couldn't be happier to have another successful week under our belt. Yet again you have impressed your family, friends, doctors, nurses and therapists. Connor you are one remarkable little fellow. I know there are so many more details of the week that I wasn't able to pack into this note but as you can see our days are a little busy and despite my best intentions I haven't had time to write you more often. Time to get some rest and gear up for another busy week of appointments, therapy, visitors, and most importantly play time.
Mommy and daddy love you Connor.
-Mommy
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