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.
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?
kiwi / 511 posts
Our issues are not as severe as yours but we are (knock on wood) seeing a light at the end of the tunnel. His first winter was miserable with a lot of ear infections, colds complete with breathing issues. We ended putting tubes in his ears a few weeks shy of his first birthday.
After that he only had a few ear infections, about with pneumonia in July after the tubes (secondary infection because he didn’t clear colds quickly). His second winter (winter is defined in our house as Nov – mid March) was better but he was on a neb every day at least once a day (which was the maintenance dose of his budesonide) and twice a day when sick, plus albuterol as needed. He seemed to catch every single cold out there.
This year we are going into his third winter, he has not been on his maintenance neb and has managed to avoid several colds that have gone through the house. He got one and we put him on his regiment and after that cold in September we stopped and haven’t needed to pick up again. We are cautiously optimistic about this winter but we will see how the rest of the time goes.
Lucky for us he rarely fights his neb, he has been on them since he was 7 months old. It is cute but yet heartbreaking when we tell him it is time for his neb he will walk to the cupboard and wait for us to hand him his fishy mask and the head to the living room and wait for us to bring the vials. He now holds the mask too, and after it is done he likes to put the little plastic tubes in the garbage and dumps his mask in the kitchen sink for us to clean. We either read or watch a short video while we do the neb.
apple seed / 4 posts
I’m so grateful for your willingness to share your story, it makes me feel less alone on our journey! My DD had a long day at the doctor on Monday that left us all exhausted as well. It took 3 nurses 4 sticks to get an IV in and she woke up in the middle of her “sedated” MRI. That was followed by an X-ray, labs, and a long clinic visit. Days like these are hard, but Lucy is a fighter like D and always gets through it. I’m grateful for her strength but it does make me sad that this is her “normal”. But I try to remember that this is only part of it, and that reading stories and going on picnics and going to the beach are all her “normal” too. Hang in there mama, Lucy and I think you and D are rockstars! Thanks for sharing!
pomelo / 5628 posts
Are you okay? That’s a lot to take in for one day. You obviously have his best care in mind and are trying to do the best for him. Some of it really is learning experiences. It’s probably also hard to tell when a cold is concerning to docs when you have an older child who neither you nor the docs would be concerned about a cold in. I definitely know the stress of low weight gain and i hope the change in course corrects it. Hugs : )
wonderful pomelo / 30692 posts
Ugh, I’m sorry! This brought back memories to Xander’s hospital stay a couple months ago. He also had to have an IV (in his hand that he kept trying to remove) and was on continuous nebulizer treatments. I had to spend a lot of the time holding him down for one thing or another and it can be so emotionally draining. You are doing something that’s absolutely torture to your child but you KNOW it will help them and you have to do it and you’re trying to soothe them while doing whatever you’re doing… it’s so hard. I can’t imagine having to do it as often as you do.
I remember at one point when Xander was in the hospital, I just had to turn away and cry because I felt so bad for him, but I didn’t want him to see ME stressed out because that would just make things worse.
I’m sorry you’re both going through this, but you’re a fantastic mom and D is only going to thank you in the end for taking such good care of him! It might not be until he’s in his 20s, but he’ll eventually recognize how much you’ve done for him!
persimmon / 1178 posts
Hey, it looks like you had a small win, in the “we’ll try a probiotic mixed in his formula instead of the antibiotics.” I am glad they listened and aren’t trying to force antibiotics. You are making the best possible choices with the information you have at the time. None of us can do better than that. You are juggling so much more than the average parent and you haven’t pulled the crazy card, yet. Mama win! The fact that you can even fake being polished and effortless is astounding! lol.
Our situation is more like @Mrs.Maven: so less involved. We have already been in the hospital this respiratory season and it isn’t looking good for the winter. We have a rhythm now and treatment stuff is much less disruptive/ emotional than it was in the beginning (for all of us)- youtube is a life saver during breathing treatments!
But, now that LO talks, she says things like, “I can’t, I’m sick,” and “I don’t want to be sick.”
That sucks.
I hate, hate, hate restraining her during uncomfortable interventions but I don’t want to hand her off to a stranger, either. I’m that mom who cries. Totally embarrassing because that is not what she needs.
pomegranate / 3533 posts
No personal experience (although I have taken care of a lot of medically complex kids)…but don’t be hard on yourself. You’re doing a great job and the docs are just doing their best to help D grow big and strong. Sending hugs!!!
GOLD / papaya / 10166 posts
You say you don’t have it all together, but you’re doing such a great job. Way better than I could. I had a meltdown this week due to much less than the weight that you have on your shoulders. You’re doing great – I really look up to you.
pomegranate / 3643 posts
I’m sorry, mama. That is so rough. I remember when lo1 was going through his bout of vomiting several times a week for six months before we diagnosed his dairy allergy. I remember complaining to my mom that I was just so sick of cleaning up vomit. Her response, “well I’m more worried about LO.” Well DUH! But it is hard on mama too, just in a different way.
When I saw this title I was kinda hoping you would have some practical tips for holding down little ones for blood work. We have to go again on Monday for more allergy testing and LO can definitely fight me back now.
coconut / 8079 posts
You are doing such an awesome job. I’m sorry it’s been a rough week!
coconut / 8430 posts
You are doing an awesome job mama.
pear / 1696 posts
Omg, I hope they didn’t guilt trip you too much. That must have felt aweful. They are the experts but you know D much better then they do!
Why all the IV pokes, do they ever do labs & IVIG through his broviac?
coconut / 8279 posts
(and I love that D side-eyes the nurses who poke him and then want high-fives, lol)
blogger / pomegranate / 3044 posts
@Mrs.Maven: I’m glad you’re seeing the light! How old is your LO now? D doesn’t “get” TV/iPad yet (he just wants to touch it which I don’t let him do since he’ll quickly rip his mask off) so that doesn’t work for us, unfortunately.
@JYHouli: that DOES sound like a long day! D hasn’t had to do an outpatient MRI (yet), I can’t imagine that it would be fun. We actually just went to get bloodwork done yesterday and they had to stick him 3 times, it drives me crazy. I am planning to now always ask for the most experienced person. You and Lucy are sweet
@Mrs Green Grass: it was two days thankfully, back to back! I’m… ok. I am also thinking I overestimated how much food actually remains in D’s mouth and gets eaten vs. on the bib or on the floor, which probably made them think he’s digesting way less than he is (via their intense calorie calculations). I know you’ve btdt, thank you
@Adira: ugh yes. I actually prefer the IV in his foot for this reason. I didn’t cry during the appointment but I did on the way home. Mr T tried to reassure me when I said I felt like a bad mom, saying no, it was a joint decision, we’re bad parents. I was like JEEZ THANKS.
@lizzywiz: yes, I did win on the anti-antibiotics! I basically told them, you need to give him something else because I am not giving him those again. He’s tolerating the probiotic fine so far, I just hope he gets back to gaining and then they’ll lay off him for a while. I’m sorry you guys have already been to the hospital.. I hope whatever stays you have this winter are short and uneventful
@FliegepilzHut: @jhd: @sunny: @rachiecakes: thanks dears
@BabyBoecksMom: that is so sweet of you, thank you!
@jedeve: haha yup. I feel a little silly complaining about holding someone down to be pricked, when he’s the one in actual physical pain. It does suck in a whole new way though! Practical holding tips.. I pretend to be a carseat. Have LO on your lap, with your arms (upper arms, they’re stronger) over his chest, and down to his crotch. If they need access to an elbow for blood draws, on that side put your hand under his arm pit and across to your other elbow (to give them a brace to put his arm against). Also as needed ask for them to pause so you can get a better grip. If you’re somewhere with an exam table it’s easier to swaddle them (yes, even 24lb D) with whatever limb sticking out, and then I sort of just lay my body on top of his with my face real close to his and let him pull my hair, he likes that. Good luck with the allergy testing!
@Seattlemom: His GI team are HUGE guilt trippers. You should have seen them when I wanted to keep giving him breastmilk, they actually made me cry. Whatever man! He actually got his broviac out in May, we thought about keeping it in to get the IVIG but it’s such a huge infection risk, it wasn’t worth it to keep it in and only use it every 5ish weeks!
pomegranate / 3225 posts
Hugs to you!!!
kiwi / 511 posts
@Mrs. Tiger: LO is 2.5 years now. When we started at 7 months we would sing songs and rock in the chair. Then out of a sense of tiredness one night when he was 1.5 we put on a 30ish minute veggie tale for his older brother and LO liked it too. Prior to this year we would never use the elastic we would just hold the mask to his face. Now he holds it there himself but I do use the elastic around his head because it puts the mask in the right place and him “holding it” really just gives it the little bit of extra positioning it needs but doesn’t require him to be fully in control.