We were given some very valuable advice by one of Patrick’s doctors when we were getting ready to bring Patrick home from the NICU. He said that it would take several months for Patrick’s medical care to feel like routine.. but to remember that it would all become routine.
He was very right. For the first couple of months, things felt awkward and new, but slowly it became routine.
What I didn’t realize was that the same would happen each time something in Patrick’s medical status changed. Hospital stays, bacterial overgrowth, changes in schedule or therapists or doctors, even just childhood illnesses can throw the routine off and each time it seems to take a couple of weeks at least to get routine back again.
I was thrilled to realize this weekend that after a couple of months of ups and down with Patrick’s gut, with changes in antibiotics and the addition of erythromycin for motility… finally, we have routine back again.
Patrick wakes up between 7 and 8 every morning. I get him up and we read books before giving him his bath and getting him dressed. Then, I withdraw the ethanol from his line and connect an syringe of erythro on a small IV pump. This pump goes in a little bag that Patrick carries over his shoulder for half an hour while I finish getting dressed and ready for the day.
Then, we take off the erythro, hep lock his line, and go downstairs for breakfast.
With his stomach feeling better, Patrick has quite the morning appetite, drinking almost an ounce of formula every morning – more than he ever has wanted or been able to eat before. He’ll also munch on some bread or cereal while I draw up the rest of his medicines.
By 9:30 or 10, we’re all done with breakfast and ready to play. Some days we’ll do stretches and let him play without his brace, other days we put on his brace and go for a walk.
Naptime is sometime around noon, followed by a snack of potato chips and formula. He gets his TPN break for 2 hours. I spend part of that time getting the new TPN ready, with Patrick’s supervision, of course. Next comes playtime while his tummy drains – we play with puzzles or read books.
Next, we make dinner. Usually, this starts with a request for “la la”, meaning that Patrick wants me to put my iPod in the speaker dock and turn on one of Pandora’s kid radio stations so we can dance.
Brian gets home and we have dinner. I’ve recently started using my little food processor to try let Patrick try some of the foods that I cook. Usually just some ground up meat mixed in with his usual baby foods. They say that letting him try homecooked foods will help him get used to a variety of flavors because unlike store-bought foods that always taste the same, home cooking tastes a little bit different every time. He’s uncertain about whether or not he likes this yet, but so far his gut is doing ok with it. It allows me to control the ingredients more closely, which actually seems to be helping.
Then, after a little bit of time to wind down, we get ready for bed. Patrick wears several layers of diaper to try to keep him dry, despite all the extra fluids he gets at night. We also wrap his chest in coflex and pin his PJ’s closed to keep him from picking off his dressing. Getting ready for bed takes some extra effort, but Patrick knows the routine and is learning to help. He can even put his shirt on with minimal help.
If we’re lucky enough that daddy’s done with work, he’ll come join us while we get ready for bed. Once his PJ’s are on, Patrick gets to sit with daddy and play or read books while I draw up Patrick’s evening medications. We let him chose if he wants them in his g-tube (he’ll lift up his shirt to tell us) or in his mouth. (We’ve learned to flavor the meds so he doesn’t mind just swallowing them.)
Then, he gives us both kisses and we tuck him into bed.
A little while later, I sneak in to put his g-tube to downdrain and connect replacement fluids before going to bed.
Of course, our days are still full with doctor’s appointment and therapy and adventures like hockey games, church assignments, and fun family outings. But I’ve even learned to adapt the routine to fit the crazy business of most of our days.
Of note – at Patrick’s last physical therapy appointment we decided to cut back his visits with her to once a month, instead of twice. He’s at the stage where he just needs to practice walking… there isn’t really much extra guidance that she’d give during our visits, so we’ll use the time instead to practice walking in all the fun places I can come up with.
In fact, Patrick got a great new walking experience this weekend. Our church group had an outing just north of Utah Lake. They call it a turkey shoot. Those who enjoy it practice target shooting while those who don’t eat a nice lunch and just enjoy one another’s company. This year it was foggy and wet and cold. But for Patrick, that meant it was MUDDY. He loved walking in the mud, walking circles around a very patient Brian the whole time we were there.
Also, we saw Patrick’s GI last week. We didn’t really address much new. They are happy with the way he’s growing and how healthy he looks. We’ve decided that with the erythro, that Patrick’s output is about as good as we can hope for. Dr. Jackson said he wanted Patrick’s liver to be healthier, but there isn’t much more we can do to help that. They checked the levels of triglycerides (fats) in his blood today to decide if he can continue to rest from lipids, or if they’ll need to be given back.
The rest of the visit was, well, just a fun visit. We ran into a lot of hospital friends we haven’t seen in a while because Patrick hasn’t needed to be admitted. With him walking, I let him come into the appointment without a stroller, so he just wandered around making friends with the people we didn’t know and delighting those we did.
It’s nice to have some calmness and routine at home right now. Brian started his new job last week, but only a couple of days each week. The other days, he’s trying to tie up loose ends at his old jobs. This means a lot of extra hours and a very tired Brian.
I’m pretty tired, too. I work pretty from the time I get up until the time I go to bed. But at least we have some calm and routine again.. We’ve reached the point I call “the new normal.” I hope it’s a good long time before we have to start working on a new normal again.