Monday, May 9, 2011

Hindsight - Vision Still Blurred

When Dominic died, the only thing they could definitively find was Infant Botulism. He had all the symptoms, and it made it seem we'd put the pieces of the puzzle together correctly. Our pediatrician, though, took my husband and me aside. He told us he didn't think Dominic died from Infant Botulism. He felt there was something underlying, something genetic, but not something he was concerned about with our other kids.

I didn't understand what he meant. So we went back to the pediatric neuro-geneticist who had done the muscle biopsy and really was the lead in investigating everything. She said they had done all sorts of tests and the autopsy, and that she was 99.9% certain Dominic died from Infant Botulism. She said she couldn't say 100% because she'd been wrong before, then told us of another family who had a child die who they said wasn't from a genetic condition, but it ended up that a subsequent child became ill and they did find that both siblings did have a genetic condition. But she felt confident that without any other real results other than the botulism, we need not worry about our other children. She felt our pediatrician just had too big of an ego to admit that all those times we took Dominic to him, that he failed to recognize all the symptoms as Infant Botulism.

Well, today, I saw this story: Hampton mother endures infant botulism scare. I guess it just really hit my heart. The mother worried about her daughter, took her to the ER. The ER tells her the baby is okay, and to take her home. But the mother trusted her instincts. She drove nearly an hour to another ER at a children's hospital. And they were able to see there that truly there was a problem with the little girl. She was able to get help, and is now recovering from what would have otherwise been a fatal condition.

When Bridget was flown to the same hospital, the same pediatric neuro-geneticist told us that Dominic did die with Infant Botulism, but not from it. Whatever had caused their crisis events was from an underlying genetic condition, likely a mitochondrial disease.

It just makes me sick, though. Did Dominic die because I didn't keep going from one doctor to another until I found one who would really see how sick he was? Did Bridget die because I didn't do that for her, either?

I think I've been too concerned about what everyone else thinks . They don't see things as concerning as I do, and so I feel embarrassed that I've over-reacted and then question myself when I feel concerned again.

This is particularly true in regards to what my husband thinks about things. He would tell me over and over that he didn't think anything was wrong with Dominic. He was just small. Some babies are small. And he also tried to reassure me many, many times when I would tell him how worried I was about Bridget.

I have been looking at the chat records from when I'd talk with him and tell him I was very concerned about Bridget, how lethargic she was being just like Dominic had been... I've been looking at those conversations. I want to know if I tried hard enough. I want to know if I was just over-reacting about some things.

This is one of those conversations, which was our back and forth for an hour:
ME: of course i don't have the car so i can't really take her in, but bridget is not really eating today :(
HIM: ack, sorry. :(
ME: I keep trying to wake her up and she's just not really doing it. she's not exactly lethargic, cuz she spent like an hour being alert and awake, but she's just not sucking... i'll try a bottle again, though
i'm really discouraged :(
HIM: sorry. don't give up, she'll perk up.
ME: but if she stops nursing, i'll lose my milk even if she does perk up, so i won't be able to nurse anymore
HIM: it's only been a few hours, you're not going to lose your milk.
ME: and she's not even really taking the bottle either
she'll get started on either, but then just give up within the first minute
HIM: weird. is she acting ok otherwise?
ME: she doesn't seem to have a fever or anything
i'm not sure what suddenly changed, because yesterday I was feeling confident enough to stop writing all the nursing stuff down
HIM: maybe she's just extra tired this morning
has she been pooping? maybe she's backed up and not feeling hungry.
ME: but she was wide awake for probably her longest span
she's been pooping, yeah
wet diapers too
ME: well, i did get her to latch on and stay on, but she is definitely not so vigorous
i'll still offer another bottle afterward. don' tknow what more i can do
still won't take the bottle

This one was over a two hour span:

ME: i'm wondering if i ought to find out about domperidone
HIM: me too. what is it?
ME: it's the medication that isn't meant for milk production, but that is used to increase milk supply "off label"
HIM: what other side effects, though?
ME: supposedly not much, unlike the reglan
although it is also a gastrointestinal kind of medicineME: bridget had the orange stuff in her diaper again
so i was looking up about that and came across this article:
considering she's had less poopy diapers too (still having them, just not as many/as much amount)
and her soft spot seemed a little "sunken" last night, I'm worried she's not getting enough
the article is reassuring in one way because it sounds like my problem is simply not enough stimulation/removal
so I need to be pumping more. I'm guessing she's not removing enough because she's sleepy when she eats. not always vigorous, seems more like "comfort nursing"
so I'll just have to keep supplementing more. i've been cutting back on the bottle amount, so likely she needed that and that's why she's going down in poop output and had the orange in her diaper this a.m.
it does make me wonder if dominic didn't actually die from malnourishment from not being able to suck enough from the botulism, rather than the actual botulism. like maybe he passed out from not having enough milk rather than actually being paralyzed
I did give bridget another bottle, and she finished it all. but then did hte huge throw up thing (not just little spit up)
so I'm just not exactly sure how to do this. i don't imagine the dr. would do anything more except maybe examine her and either confirm that she maybe getting too little and so a little dehydrated, and maybe check her blood levels for glucose, sodium, electrolytes or whatever
and I was talking to bridget, and I don't think she was in her trance state. and she smiled at me twice
HIM: should we get a more accurate scale so we can at least weigh her? I really think you're doing everything you can.
ME: That's another reason I think she's not getting enough
i have weighed her on our scale, and it isn't exact. but it just seems to be staying the same
whereas when we were finally getting weight gain on the dr. scale, she was going up from just under 5lb mark on our scale to around 5.5lb on our scale
and now she just seems to stay at the 5.5lb mark
i'd think after a week it should be closer to the 5.75 or 6, even if it isn't exact
HIM: I don't know. could she handle a few more bottles?
ME: I'll keep offering them
maybe just do the smaller amounts like I've been doing the past few days
she seems to tolerate that pretty well. i kind of panicked and gave her the full 50ml bottle after nursing her on both sides, so that probably was too much at once
so i'll just nurse her and offer her the 25ml bottles more often. when she was gaining 1oz a day, she was nursing and getting about 100ml/day from the bottle
90-100, i guess
i've just been doing 25-50 ml in a bottle the past couple of days because I thought she was nursing better and my milk seemed a little more abundant than it had been. but maybe i'm wrong
I also thought if she had less in a bottle she would nurse more/better, and make up for it, but maybe she's not strong enough yet
i also wonder if she's not as effective at nursing because of her overbite?
HIM: could be, I really don't know
sounds like a good plan though
ME: i figure the doc was comfortable w/ waiting a month w/o seeing her unless I thought we needed to take her in. 9 days ago she was still gaining at about 1 oz./day
I don't think she's been losing, hasn't acted lethargic (actually more active) or fussy
and she's still eating/peeing/pooping
so I figure we're good to just tweak things for a bit
the nurse will be out next week to weigh her, so I just want to wait until then. I'm afraid if I take her in and there's any fuss about her weight (but still only results in, okay go home and see if she does better and bring her back in) I'll get discouraged again (and panic that it's another Dominic situation)
so I'd rather just be slightly ignorant, but still cautious, and see if she keeps growing w/o frequent weigh ins
HIM: I think giving her more bottles for now sounds like a good plan.
ME: yeah, i really don't think i'm going to let her starve, even if I am not a NICU nurse ;)
I'm really trying to pay attention to even any slight indication things aren't going as well
even if they are, and I'm being overly cautious, I don't think I'm porking her up too fast, so a few extra bottles shouldn't hurt too much
the most damage it could do, though, is make her less interested in nursing because a)she's more full and b) bottles are easier
and that could impact my milk supply and I could end up not being able to nurse anymore
but that's worst case, so I'm still trying to pump more to help keep that from happening (which again, makes her less interested in eating because there's not as much milk there when she goes to nurse..

and if I pump, I'll replenish more so it won't seem so empty to her or something

The next day, this was our conversation:

ME: well, dr. lawrence ordered a can of A&W rootebeer everyday
supposed to help your milk supply
HIM: lucky you. ;)
I'm pretty sure they sell it by the case at costco
ME: also, to do the more milk or mother's milk teach
they're going to do some research about the domperidone, but have never prescribed it before
HIM: so another trip to good earth?
ME: were willing to prescribe the reglan, but i mentioned my hesitancy w/ depression history
i'll check to see if gnc or other health store near here has it, because i think they list good earth due to the location near their clinic
but i'm sure it's not the only place you can get it
but bridget is again not nursing so well
so i'm just getting nervous, but trying not to ... what a fun cycle
I did get her awake to latch on and nurse, just she dozes off and isn't so vigorous
maybe i'm just more nervous because of the time of year. and that dominic's whole dr. visit drama started off when I called about the orange in his diaper (which they at first said was normal when i called to ask about it). i finally took him in a couple days later because he just didn't look right/act right to me, and that's when they saw that at about this same age he was only slightly above birthweight
and now bridget is the same age, and seems only slightly above birthweight, and had the orange in her diaper, and is much more sleepy (like dominic was -- remember the day we moved and i thought it was such a blessing that he slept so much so i could help with the move)
of course, bridget's been sleepy all along, but still is not making me feel much better. :(
HIM: sorry, I'm sure it brings up a lot of stuff. but you're doing everything you can and it'll be ok.
ME: yeah, it will be fun to bless her and have a 6yo Dominic running around, too
should make for a fun beginning to September
at least she's still pooping. dominic wasn't having poops

This was about five days later:
ME: bridgets making me nervous
HIM: why?
ME: hasn't pooped since yesterday. shes making those weird noises
very sleepy
she was wide awake when the nurse was here
went to *'s school and ran into april, and we were in the parking lot talking for probably about an hour
i think it was too hot for bridget, so now Im' worried i fried her brain or something :(
she's nursing, kind of, but weakly
HIM: if you were just outside and not in the car or anything I'm sure she didn't overheat.
she's probably just tired, maybe getting a little sick from what the other kids had
ME: but toward the end I did get the kids in the car. had both sides of the doors open
but not sure, maybe 10 minutes in there? It was pretty warm when I got in, even w/ those doors open. i turned on the air conditioner full blast, but maybe something's wrong already
doesn't help i'm in hyper paranoid state this time of yera anyway
HIM: no, it wouldn't have made a difference especially with the doors open. she didn't overheat
ME: and nursing a floppy baby is just kind of freaking me out alitle
HIM: I'm sure it is. just keep an eye on things, but she's ok.
ME: the nurse did say that she'd never felt a soft spot on the back of a baby's head like bridget has
said to definitely meniton it to the dr
but said her soft spots were not sunken or raised, so that was good
she said there's a soft spot usualy on the lower back of the head, but closes up pretty quickly after they're born, so it was really unusual to her that bridget had that extra soft spot area
also said the lower jaw may be making it harder for her to eat so to bring that up w/ the dr
and to ask about the RSV shot, but she's not sure if she'll have that covered or not

I look through these conversations, and many others. I look at notes I'd written down, journal entries. It is obvious I was concerned. And there are even times it seems I'd respond to that concern in a way more heightened than perhaps it should have been. And yet, ultimately, my response was not enough. I discounted all those things because I wanted to be "level-headed" about it and not get "carried away" in fear.

And here I am. Still trying to figure out if the concern I'm feeling now is legitimate or inflated. I still wish we could figure out if Dominic really just died from botulism, but then if so, what did Bridget really die from? And if they both died from the same thing, then what is that "thing?" You'd think after this long, we'd have a clear answer. So knowing that even good, smart doctors can't help us always, that mixes in with feeling embarrassed about "getting too worked up about 'nothing'" and the fact that really, my kids are overall doing okay, then make myself feel justified for not trying harder to find what is going on.

Then I read stories like the one above. And I hear people talk about how their child lived because they were the advocate that their child needed. I feel bad. I feel like I failed my two kids who died. I feel like I'm failing the ones who are having these things that sometimes seem inconsequential, and other times seem to be a symptom of something bigger. I feel like I need to gain confidence to be more bold and "fight" for my kids, and I feel like I need to settle down and be more calm so my kids don't have to be in the middle of a fight for no reason.

This blog is titled "It Might Be Mito." But it could have easily been titled "It Might Be Nothing." So I struggle.... unsure. Even with hindsight.

1 comment:

  1. Hi this is Sarah Wesley's mom from p2p. been reading your blog. I just wanted to share a couple of things. Maybe they won't help but...

    When your dealing with utah...your going to keep being referred back to if pcmc isn't taking it seriously...your doomed. The next closest hospital is what Denver Children's??? Not exactly drivable. All the other hospitals are adult hospitals and are going to just send you right back to pcmc. So the mother going from one hospital to another...might be plausible on the east coast where there are lots of hospitals..but not so much in Utah.

    Also the leighs. I am no mito expert. What I have is an observation from watching my friends children die of leighs over and over. It seems to happen in 2 fashions. First is the child that is basically sick from birth...dx...with mito..and eventually dx with leighs as the progression of the mito has become so bad it's considered leighs. These kiddo's seem to be able to last longer with proper medical treatment. That if mom becomes momma nurse and they cross fingers and do everything right they can keep the child alive for quite a while before sepsis kills them or resp failure kick in.

    second version. The child seems to be okay at first, or a few things off but nothing screaming horribly wrong. As they get a few months old, things start moving backwards. The are hyptonic, poor feeding. Anywho. These kids the disease seems to take hold very quickly. and within months they seem to die. These seem to be the ones where the parents often haven't even hear of mito until the MRI Is done and it's obvious what it is. From my observation there is little that can be done for these kids. They get feeding tubes, oxygen sometimes they are even able to do Iv stuff and a trach...but in my observation each time we have someone join p2p whose baby was fine one month..and has leighs the next..that they don't usually last more then a few months. I can't answer why obviously. But I'm being brutally honest because your kids seem to be in the latter. And just from my observation there was probably little to nothing that could of been done. Many that I know have perfectly healthy kids as well. One has had 2 babies pass away but she has teenagers that are fine. So it's totally plausible to have healthy kids and ones that have leighs.

    I hope I haven't offended by being so forthcoming. You know I'm always on p2p to talk to.