Last week was a busy one for us. D had an appointment at the GI clinic (which means they draw a TON of blood), and an IVIG infusion (which requires an IV line to be placed), and because he has a cold he’s back to getting nebulizer treatments. These weeks full of appointments used to be much more common for us, and somehow the timing worked out that these two big ones were back to back. At each appointment I had to hold him down for multiple painful pricks or uncomfortable procedures, which is one of my least favorite tasks. I really hate doing it, but in the moment I can just tune out his struggling and complaining and crying since we have no choice. In a way I dread the day when he is more vocal, since I imagine him yelling, “No Mommy, stop it, it hurts!” will be much harder to ignore, and the questions about why he has to go through all of this so regularly will be harder to answer.


D waiting to see the GI doc one day, getting his IVIG infusion the next

He gets the IVIG infusion about every 5 weeks to give his immune system a boost. Apparently a lot of short gut kids have weakened immune systems – although his hemotologist is hopeful that he won’t need it forever. The prep for the infusion takes over an hour (I start by putting numbing cream on the possible IV sites before we leave home), and the infusion takes about two hours. They have to continuously monitor his temperature and blood pressure, even though he’s gotten it since his 2nd NICU stay and has never had a bad reaction. The IV prick itself is the least offensive, followed by the blood draw at the GI clinic, where they have to keep squeezing his arm to get enough blood for all the tests they have to run. Thankfully now we only go to clinic once every few months, although for a while it was weekly. Worst of all is the nebulizer, where he has to be pretty still for about 15 mins breathing in the meds – three times a day! The only saving grace is that the nebulizer is more effective when he cries, since he takes deeper breaths.

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On top of all the fighting with him to get the treatments done, the GI appointment didn’t go well. I mentioned before that I’ve deviated from their recommended diet, and that I stopped giving him a course of antibiotics early due to their awful side effects. Unfortunately we found that D gained barely any weight since they last saw him almost 3 months ago, and they said the extra food I gave him and stopping the meds caused him to have malabsorption. I agreed to go back to their diet (no dairy, very limited fruit, max of 3g of sugar a day), they’ll increase and further fortify his formula dose (to 24 calories) and we’ll try a probiotic mixed in his formula instead of the antibiotics. They also thought his cold was way worse than I thought (which is why we’ve resumed the nebulizer treatment) and ordered a chest xray and asked for a pulmonologist referral. I walked away from that appointment with an exhausted D and a sense of failure as a mom. Here I had been trying to advocate for D, but I apparently overlooked a few big problems. I think the GI docs throw in a solid guilt trip about how awful he’s doing to make sure I don’t get cocky and ignore their directions again –  it worked!

In some ways I’m so happy that he’s such a fighter. He’s never content with the way things are – he doesn’t even believe that he should have to lie down for diaper changes anymore and constantly tries to do sit ups or crawl away. I’m glad that he reacts to pain (unlike those scary first days when he didn’t), and in a way I’m proud of how aware he is of what’s going on. As soon as the tourniquet goes on his arm, he knows what’s up and starts yelling and trying to get away. I know he recognizes the doctor’s offices we frequent and starts getting antsy as we wait. I’m amused that he refuses to wave at or give high-fives to the nurses that regularly stick him, but will happily play with the ones that don’t. I’m proud of how comfortable he is with non-painful medical procedures like getting his blood pressure taken or his pulse ox checked.

At the same time, I hate that these things are so familiar to him. I hate seeing him at ease with an IV on his ankle, although I’m proud that it doesn’t stop him from wanting to crawl and stand. I hate that he patiently lets me put the nebulizer mask on him, always trusting me until the last second when I turn it on and he flips out. I hate how at times he’s been so exhausted from an all day appointment that he just conks out on the exam table when he’s still getting checked out.

I also wish I wasn’t used to it all. I hate that I know which veins they should draw from for what (his left elbow for blood draws, right ankle for IV). I’ve mastered the confusing layout and elevator system in the children’s hospital. Each doctor expects me to be able to quickly recite from memory anything about D’s medical history or current schedule. I keep track of what things need to be brought with us to different appointments – who’s office has toys, who needs poop & pee samples, who needs a print out of his current medications, the different ridiculous parking methods (thanks downtown DC!), and of course how many hours each appt takes to know how much food and medications I should bring. I wish I didn’t know how exactly to hold him in my lap and brace down his arms so he doesn’t pull his nebulizer mask off.

D passed out getting his IVIG

I worry a lot about what D will think of all the medical choices we’ve had to make for him, and all the things we’ve put him through. I know that Mr. T and I have always tried to do the absolute best thing for D, but a lot of it is unpleasant. I don’t have a neat ending to this post really. I just had a crap week which brought up some issues that are unique to our situation that I thought would give a bit more perspective into my life, beyond the supposedly polished mama who can juggle all of these appointments with no sweat. I don’t want to give off that impression since I certainly don’t feel that way!

Have you had days or weeks when you’ve felt this way? If you have a LO with a chronic health issue, does seeing them cope with it make you both happy and sad?