Hellobee

D gets an intravenous immunoglobulin (IVIG) treatment every 4-6 weeks to boost his immune system. I’ve mentioned this before briefly, but I decided to keep track of an IVIG day since this is now D’s most frequent doctor’s appointment. This will be pretty different from the last day I tracked, when I was working. I still WOH, but only 2-3 days a week, partly because of regular appointments like this!

D’s appointment is in DC and lasts several hours. My parents live closer to the city than we do, so I’ve started dropping K off with them while D and I head in to the appointment. This day was so draining, but I had already begun tracking it from the morning so I pushed through and finished it up. I’ll have to pick a happier day for the next SAH day in my life post!

4:30a – middle of the night change/top off D’s milk – My habit is to get up around this time or slightly earlier every day! Since he gets the majority of his formula/calories overnight through his feeding tube, he needs at least 2 diaper changes during the night, the first being right before either Mr T or I go to bed. I set my alarm and try to complete everything as quickly as possible – I keep the formula to top off his bag in a cooler in his room so I don’t have to run downstairs to the fridge. He actually woke up quite a bit this time and was babbling at me, but when I stuck him back in the crib he settled down right away and went back to sleep. I checked on a peaceful K and went back to bed.

7:30a – I wake up hearing K crying, “Mommy! Mommy!” on the monitor. I get up and run to his room, expecting to find that he’s wet the bed. Fortunately he was only having trouble looking for a little purple teddy bear he loves to carry around all the time. It was under a pillow. I thought I successfully convinced him to lie down a bit longer (I didn’t know how late in the morning it was yet) and went to go brush my teeth, but when I emerged from the bathroom I found him snuggled up in bed with Mr. T. Of course, D decides it’s a good time to wake up now too – oh well, time to wake up everyone! At least it’s a reasonable hour, thanks to daylight savings time. D’s feeding pump starts beeping since his overnight formula dose is finished. K and I head into D’s room and after changing D’s very full diaper, giving him his morning dose of vitamins and meds and unhooking his G tube line, we head into the bathroom for potty and brushing teeth.

D loves sitting in the sink to brush his teeth. Please note the mischievous smile, because he’s holding K’s toothbrush!

After the bathroom I quickly get D dressed, and then we head to K’s room to get him dressed and ready. They normally are up closer to 630-7 so we are running a little behind schedule; my goal was to be in the car at 9am! K and I have a drawn out discussion over what socks to wear, of course. Neither of them is used to being rushed, but I keep reminding K that we are heading to Grandma and Grandpa’s house so we need to hurry.

8:20 – We head downstairs. I let D wander around a bit (he doesn’t like getting plopped in the highchair immediately) while I grab some Fruit Loops (I know, I know, not the healthiest option) and chocolate milk for K (aka regular milk mixed with chocolate Pediasure) and heat up some water to make oatmeal for D. When K’s ready to sit down and eat I stick D in the high chair and give him some Cheerios and a cup to play with while I make the oatmeal. After D finishes the oatmeal (yay! he doesn’t always eat a good breakfast since he’s been literally eating all night), I quickly fry some eggs for me to inhale. I got addicted to having over easy eggs with Old Bay for breakfast during my Whole30! Sometime in the process Mr T comes downstairs dressed and ready to go, and sits down to have a cup of tea with the boys. After breakfast it’s a mad rush for K to use the potty, change D, hook up an extension to his feeding tube (so I won’t have to undress him to get his next dose started en route), and grab the bags for both D at the doctors and K at my mom’s – packed the night before to save time!

9:15a – Out the door and in the car. Not too far off schedule, woo hoo! The kids are good passengers and D babbles to me as K talks about what he’ll do today. Thankfully traffic isn’t bad on this leg of the trip.

9:45a – We arrive at my parents’ house. I unload everybody + K’s food and toys for the day and let D wander a bit before we get back into the car. I get my mom to help hold him so I can put numbing cream + clear bandages on his inner elbows, so when they prick him for the IV it won’t hurt as much.

9:55a – After that we say bye to K, I load D back into the car, turn on his first oral rehydration solution (ORS) dose through his pump, and head into the city! Although the trip is less than 6 miles (!), it’s a major commuter route and we’re stuck in nasty traffic.

10:40a – When we get to the building, the normal valet area is already full, so we have to head to the secondary. I think the only reason the valet agreed to park us instead of telling us to go elsewhere was because I had a kid in the backseat! D and I hop out (with cars waiting behind us for us to move… so stressful getting the stroller and all the bags!) and head to the elevator to the office to get checked in. They pulled us into the initial area pretty quickly, and then the nurses weighed, measured, and got an initial set of vitals (blood pressure, temp, pulse ox). D recognized the office area and got very nervous and clingy! I guess he knows what’s coming. Then we head into a small exam room to get his IV started. His first ORS dose finishes so at least he can lose the backpack. The child life specialist comes in and tries to distract him with bubbles but he’s too smart, and knows the worst part is about to come. I hold him down as they pull off the bandages on his elbows to look for a good vein, put on a tourniqet, choose a site, and insert the IV. They draw some blood for labwork (they check his IGG level each time to see how he’s doing with producing it on his own, in the hopes of weaning him off these infusions someday) and then do a saline lock.

11:22a – The IV insertion is done, ie the worst part is over; now the waiting game begins. The nurses are very nice and friendly but unfortunately not the most efficient! Eventually they give me the Benadryl and Tylenol (given each time to try to avoid him having a reaction to the infusion) to give him through his feeding tube. It’s around his normal lunch time, so I make a makeshift high chair with the adult sized chair + tray and feed him his lunch – homemade chicken/rice/veggie puree + crackers! We’re sharing the infusion suite with two other boys, one around 6yo and one 16yo. D is pretty interested in both of them! I think both of the boys are getting chemo treatments, but I didn’t ask to confirm.

12p – the IVIG meds have arrived from the pharmacy, so the nurses start the infusion. Since this is around D’s naptime, I start his nebulizer treatment in the hopes that it will lull him to sleep since it has before! Alas, no such luck, so after the nebs we start the hours long game of figuring out ways to occupy D. We go through all of our toys, all of theirs, and start wandering the room/halls, dragging the IV pole with us. I barely have time to scarf down a sandwich, and unfortunately none of the nurses volunteer to chase him for a while so I can have a break – I know they’re busy though! They also have to take a set of vitals every 15 minutes, and the blood pressure always takes forever so they have to try it multiple times on multiple limbs to get a good reading, which you can imagine is very frustrating to D (and me, since I have to hold him down!).

1:30p – I hook up D’s 2nd dose of ORS, so now he’s got the IV, feeding tube, and pulse ox all trailing him around! Still no signs of slowing down…

2:30p – D is SO OVER this appointment. His ORS dose finishes, and now his diaper is overfull so I change him and discover I need to change his pants and onesie as well – which I neglected to prepare for, with the IV in his arm. Until recently he’d have the IV in his foot, which made it easier to change him (he’d just go pants-less). I have to leave the dirty onesie on the IV line and try to figure out a good solution for his IV arm, at first keeping his hand in the belly part and then abandoning covering his belly at all. I continue trying to find ways to occupy him, mostly with more crackers.

3p – D finally passes out on my lap while I’m holding him still to get a good blood pressure reading. I’m in a super awkward and uncomfortable position on the floor but there’s no way I’m going to get up and disturb him before it’s completely necessary.

 They needed to keep an eye on his IV site, so I had to basically take off the new onesie! Whatever, he was sleeping peacefully…

3:25p – The infusion is finally done! Unfortunately of course that means D’s nap is also over. He wakes up as they are pulling all the tape off of his IV site and is understandably very grumpy. I help try to make the tape removal as painless as possible and then comfort him when everything’s out. I change him one more time, get his jacket on, stick him in the stroller and say our goodbyes. He’s happy to leave and is blowing everyone kisses and waving!

3:40p – We get to the car – thankfully the valet guys didn’t hide it too deep in the garage so we can get out quickly. Unfortunately there’s gobs and gobs of traffic again, thanks to some construction on our route to my parents. I was hopeful that D would continue his nap but unfortunately he’s up for the whole ride, although at least he’s pleasant. I’m actually feeling exhausted and dejected and annoyed about the whole process – why does it take so long?! Why do we have to do it so often? Is there no better way? I call Mr T to vent but get upset and instead just hang up and cry for a bit. Thankfully the trip is long enough that I can compose myself before we go pick up K.

4:40p – We finally arrive at my parents’ house. K is unhappy to see us since he wants to stay longer. D and I need a break from the car so we hang out for a bit and have some snacks. I forgot to bring D’s last ORS dose with me (I thought we’d be home by now!) so I just give him water through his tube instead, hope that missing one dose isn’t such a big deal – the ORS is 90% water anyway. Everybody goes potty/gets changed and then we suit up and head back out.

5:25p – back in the car. Both kids are pretty zoned out, K actually falls asleep which is super rare for him! D keeps trucking along but is relaxed. Mr. T calls again on his way home and I ask him to call for a pizza since it’s at least something I know K will eat well (he didn’t eat much lunch, according to my mom) and requires no prep work once we’re home. My phone dies so I hope he’ll be able to take care of it for us! D’s dose finishes but I can’t reach to clamp his line so I just keep hitting pause on the pump each time it beeps (every 3 minutes or so) since if I turn it off without clamping the line, the stuff in his stomach could leak out into the tubing.

6:15p – We beat Mr. T home. I wake up K who is disoriented and grumpy, but I can’t hold him since I need to get a grumpy D out of the car also! All three of us make it inside and I feel like a robot as I take off three pairs of shoes and three jackets. I try to give D a few minutes to run around before confining him to the highchair again, but it’s already so late for him to be getting dinner and he only slept for 20ish minutes (he normally takes a 2-3 hour nap), so I know he needs to get to bed ASAP. Mr. T shows up, sans pizza, so he calls one for delivery. He helps to entertain a still grumpy K while I feed D.

6:45p – D’s done eating so I take him up to brush teeth, change into pjs, read a book (he chooses Doggies by Sandra Boynton, the bane of my existence) and plop him in the crib. I know he’s exhausted — as soon as I pick him up after reading he lays his head on my shoulder, ready to sleep. He doesn’t make a peep when I leave the room! I change out of my gross clothes that were on the floor of the doctor’s office all day and head down to play with K and Mr. T (they’re making a Noah’s ark + Noah’s truck brigade).

7:10p – Hurrah, the pizza is here! The three of us eat and thankfully K eats well. He pleads for more time to play so we let him run around a bit as we talk about our days, even though I know he’s exhausted as well.

7:45p – I take K up for potty, brushing teeth, changing into pjs. I try to give them baths every other day and am fine with skipping today. He claims he’s not sleepy, of course, and tries to tell me he doesn’t need to brush his teeth since he brushed them this morning – a fight I thankfully win! We read two books, sing a song, and then it’s lights out. Meanwhile Mr. T heads back out to work!

8:05p – I head down to make D’s formula (with an added probiotic and other medication) in a big pitcher, and then fill up his feeding tube bag. I pop in an ice pack and bring it upstairs, hook him up and plug in the pump to charge overnight. I check in on K (who isn’t sleeping yet) and head back downstairs. Finally, some time to myself! I pay some bills online, message people about HB classified orders, do some blogging and write some time details about the day (although I ultimately write this post a different day). I do the dishes, make a new batch of puree for D (chicken and veggies again!), and prep his medications for the night and the next morning. K is going to school tomorrow so I pack his lunch and snacks. Mr. T shows back up at some point and continues working on his laptop until we’re both ready to head upstairs.

11p – I bring up the bottle of formula to top off D’s bag and to leave in the cooler for the middle of the night top off, change his diaper (which he sleeps through, woo hoo!), give his night meds, and pop him back in the crib. I go brush my teeth, consider taking a shower but am too beat and decide to just shower in the morning (just keeping it real!), set my alarm for

4:30a (to change and top off D again) and hop into bed. Mr. T is less lazy than me – he takes a shower and then joins me. Hooray for a calmer day ahead tomorrow!