we had to rush parker to hospital last thursday.
we spent 8 hours in hospital
and
after several tests, we learned that parker has a cat in his tummy.
note: you do not need to be a radiologist to see the cat in his scan:
parker's belly scanyou see the cat face, don't you?
ok
a little wry goertzen humor
but, seriously, that is pretty bizarre and cool.
parker began having abdominal pain in the upper right area of his rib cage (RUQ) on tuesday evening. by wednesday it began to build in intensity and by wednesday night he was having significant shortness of breath (SOB) and his abdominal pain was very intense. we talked about taking a trip to the ER but we hate, HATE, hate going to the hospital. and so does parker. it is terribly upsetting for him and he does not feel 'safe' while he is there. sad to say but the reality is that he has heard too many doctor's tell him they can't or won't treat him or don't know how to help him. that has left it's mark. too much water under the bridge - so to speak.
we decided to wait it out.
when he awoke thursday, the pain had only intensified and he was having great difficulty moving around, and when he did move or try to walk, he doubled over in pain and his shortness of breath was worse. it was significant enough, that he WANTED to go to hospital. given the level of pain he lives with on a daily basis, we took that very seriously. we put in a phone call to DR H and based on parker's symptoms, DR H told us to get him to the hospital ASAP. he was very concerned about liver and/or gall bladder - there is a high incidence of gall bladder issues associated with lyme infection.
we opted to take parker to a local area hospital rather than the children's hospital (BCCH). our experience at BCCH has rarely been easy. like i said before, too much water under the bridge. i want to preface this with a "we do not think all doctors at BCCH are horrible." yes. there are several i would like to punch in the head, ahem, but it is very important to me that me venting my frustrations does not come across as " a crap on BCCH" mentality.
we do not think all doctors at BCCH are "bad" nor that they are all in some sort of conspiratorial mind set against us personally (albeit, at times it has felt like that) and we work very hard to help parker understand that HOWEVER our experiences with most of the doctors we have been in contact with there in regards to his condition and LD diagnosis have been either hostile or indifferent and all have abdicated responsibility for his care. that is our experience. we have had encounters that have made our blood boil, have frustrated us and have grieved us to tears. so why, in a way, am i defending them? i guess i feel the need to still hold to the ideal that at the core they are well intentioned, caring, compassionate folks. certainly that is the experience of so many. while our experience speaks other wise, i do acknowledge and am profoundly grateful that we have had some incredible medical professionals, namely our canadian GP and countless nurses, who have and are supportive, caring and countless times have gone to bat for us.
okay.
now, that i've cleared up the fact that i'm not trying to be "catty" about BCCH, and i've blown off some steam, i'm nearly ready to "re-tract my claws", and get back to this issue of the cat in parker's belly.
given parker's condition when we arrived at the hospital, he was seen pretty quickly. naturally, the doctor was not familiar with lyme and had never heard of babesia (which is parker's primary diagnosis). we expressed our concern about the possibility of this being a gall bladder issue. we took care to be casual about mentioning DR H's recommendation that parker undergo an ultrasound. (he had faxed over his recommendations as far as what he wanted the doctors here to test for.) but, umm, yeah, waltzing into a canadian hospital with an american docs requisitions requires some diplomacy. egos are fragile...and i'm not so brazen as to think or insist that DR H knows better than any one else - but given that lyme is so "rare" here, it's not a huge leap to suggest that he has a lot more experience with it.
he also has the advantage of knowing parker's complete and very complicated health history - something an ER doc doesn't. however, he is at a disadvantage in that he hadn't physically examined parker. the ER doc did not agree that parker's issue was gall bladder. based on her physical exam, she felt it was likely that he had pneumonia or liver issues. certainly i'm not a doctor and given his symptoms of SOB and RUQ pain that was a reasonable assessment. we did not push the ultrasound issue at that time.
parker was sent for x-rays and had bloodwork done.
the x-rays came back normal. no pneumonia.
his blood work came back flagged - showing he had some sort of infection. but the doc said she didn't know if that was due to a possible viral issue or related to his lyme and babesia infection. again she re-iterated she knew nothing of lyme and babesia.
again, we asked for an ultrasound
she refused
yup
flat out refused
she said if there was a gall bladder issue, than his liver enzymes would have been elevated.
hmmm. i was hospitalized with acute gall bladder pain. my lab work came back normal. no elevated liver enzymes. but based on my symptoms (which were the same as parker's) i was given an ultrasound and lo and behold, ended up rushed into emergency surgery.
hmm.
i let the cat have my tongue and kept those thoughts to myself and just diplomatically re-iterated our request that he have an ultrasound done.
it was frustrating because she kept interrupting us and talking over us. we did not feel like she was hearing anything we were saying.
she said that gall bladder issues were rare in most children.
true.
but we tried to explain that,
"parker is not 'most' children. his disease puts him at risk for developing gall bladder issues."
she continued to insist that she didn't think that this was a gall bladder issue. and insisted that an ultrasound wasn't necessary. i don't get that at all. not at all. gall bladder aside, why in the world is an ab ultrasound on a patient with acute abdominal pain not be considered a useful and necessary tool of inquiry?
finally, after several attempts to try and get our point across and being repeatedly interrupted, graham said,
"would you please let me finish?"
we re-iterated our concerns and that these were shared by parker's lyme specialist as well. and then we very firmly insisted on an ultrasound. for the 5th or 6th time.
i think she finally got the hint that we weren't gong to let this go.
she said she would discuss with radiology whether they felt it was necessary for parker to have an abdominal ultrasound done. and maybe, she would arrange one to be done as an outpatient at a later date.
here's the thing, i'm not disputing that her opinion wasn't credible or plausible but on the other hand, our request was not unreasonable or non-sensical either. it is not like we were saying,
"hey, our kid has a headache, could you pls x-ray his foot?"
the child had majority of gall bladder attack symptoms - acute RUQ pain radiating into stomach, nausea, shortness of breath, mild diarrhea, loss of appetite, pain intensifying in evening, doubled over in pain when he tried to walk or stand, nothing alleviated his pain...etc. etc.
helllllooooooo???
she insisted that it was highly unlikely that this was gall bladder associated. that he either had a viral flu or that his pain was due to tendon/ligament strain across his rib cage.
i do not know how i did not leap across the bed and strangle her. seriously.
she eventually returned and said that the radiologist would do an ultrasound immediately
thank goodness
then she introduced us to a new ER doc because her shift was over.
good riddance.
and okay, i have to admit, i told parker that i almost hoped that they would find something wrong with his gall bladder...a sort of twisted vindication - all at my poor kid's expense. but hey, i'm human after all.
parker had the ultrasound done.
and then we waited
and
waited
and
waited
and
waited for the results
we had now been in hospital nearly 8 hours
and
parker had not had anything to eat or drink in about 24 hours
and
he was reaching his coping capacity.
graham went on the hunt for a nurse to find out why it was taking so long to get the results. the response to his inquiry was
"oh, we had to call in a surgeon. he's here now, so i'm sure he will be with you shortly."
a surgeon? what the hek?
ahh, can you say heart attack
and
can i say...
"i told you so!"
parker has gall stones. 3 big ones. and a bunch of little ones.
the surgeon was lovely. (he was bald. i like bald) ha ha. also, lovely as in nice and caring. he said it was very, very rare for a child to have gall stones. he wouldn't operate on a child nor did the hospital we were in operate on children. that has to be done at BCCH. bummer. argh. we were so hoping to avoid BCCH. the surgeon said that he would be referring parker's case to surgeons at BCCH.
today, we heard from BCCH and he has an appointment scheduled with the surgeon on july 20. i guess we'll know more as far as if he'll need surgery or not at that time. as it stands, parker's pain has subsided in intensity. he does still have it when he moves around too much. he continues to have significant episodes of SOB however that can also be associated with LD and co-infections too - so the SOB may or may not be related to his gall stones. currently, he has had one episode of blood in his urine.
since this all started we have been in touch with DR H several times. prior to this, DR H had parker on a medication called actigall for his gallbladder. DR H has now upped his dose of actigall and prescribed some other meds to provide support to his gall bladder. sometimes the formation of the stones can be a side effect of one of the IV meds he is on - however, in medical journals, gall stones as a side effect of this medication is listed as "patients have a less than 1% chance of developing gall stones." the risk is slight but as a pre-caution, that medication has been stopped for the time being. if the stones are related to this IV med, than there is the possibility that the actigall and other meds will help to dissolve them. it is not unheard of for LD patients to have complications with their gall bladder. sometimes due to the medication but also there is correlation between the fact that lyme can infect and wreak havoc on any organ or system in the body. add to the mix that gall bladder issues also tend to 'run in families'. lucky parker, we have a family history.
you can read HERE about my particular issues with my gall bladder.
RIP FELIX.
yes, i named my gallbladder post mortem.
(read about felix HERE)
why?
because we are weird like that.
naturally, parker has decided that he will name his gall bladder too.
but, only, if he has to have surgery to remove it.
if so, than he will name his gall bladder "brad" - as in brad marchand of the
cough
sputter
we don't like boston
and
we do not like brad at all. not at all. a totally annoying, cocky dufus - we would not be sorry to see brad go. ha ha. that thought has helped parker cope with the idea of an impending surgery. it also helped him feel profoundly better about the possibility of surgery when taylor told him surgery can be used as a sort of chick magnet.
"well, parker," taylor said, "afterwards, you can show girls your scars - chicks totally dig that kind of thing."
the thought of that had parker grinning like a cheshire cat.
oh my.
No comments:
Post a Comment