So 2014 has sucked even more......
Ya know, I thought 2013 was going to be the suck(iest) year for a long time, but nope, January 1, 2014, it started off with (what I consider) even worse news.
My Bec.....if you haven't met Bec (and though most of you that read this, know about her, just may have not met her), Bec is very special. She's never had a bad day in her life (well, maybe 1 or 2). She greets every day as a new adventure. Worries more about whether she'll have time to make her lunch than do these clothes look cool......A kiddo who has had more than her share of undeserved challenges over the years.
Bec is the last of the 3 biological kids. Her life also started off with a bang, as in a seizure when she was 6 weeks old, then it was failure to thrive, then it was there's something really wrong here.....a month here and there in the hospital, no diagnosis until she was 3-4 when she saw a geneticist who had seen another kid like her and it was given a name, Dubowitz Syndrome.
The years have past, the challenges have been more academic than anything. Still looking as we speak for the 'gene'. Been to the National Institutes of Health and were 'fully' sequenced, Boston Childrens' also did it almost 2 years ago, nothing.
Treated her for the most part the same as the other kids, demanded she be educated along with the 'regular' kids, also demanded that they educate her, period. Last year she got a 'real' diploma, partially because of a loophole (she cannot pass the standardized test, but she was in the 'gap' class where they didn't have to and therefore gets a REAL diploma, not just a certificate of attendance).
She's had some medical issues over the years, but nothing as major as that first year or so, or so it would seem.
She's always had food allergy/intolerance issues, totally no dairy, no soy, but not to the extent that every ingredient is scrutinized. Every once in awhile, she'd have an issue and first question was 'what did you eat?'.
So fast forward to the holidays and she's throwing up, and I mean several times per hour....No one else in the house is sick or has been sick.....after a couple of days, she felt better and went back to work....couple of days later, sick again, took her to the pedi (actually we were exiting from them to an 'adult' practice because the PA we see there is retiring in June, thought it would be a good time to go), he said it was a virus and she had reinfected herself.....not that I was buying this with no one else being sick, but whatever.....he gave her some anti nausea meds, a couple days of this and she's okay again for a few days, and then it's back and of course it's a weekend.....she goes back to him on Sunday January 31st, once again, he says it's viral.
I 'talk' to her docs at Boston Childrens' and they ask about bloodwork, etc. I call the pedi office on February 1, on the 2nd, we go for bloodwork and stool cultures. Bloodwork done, we come home to catch the other stuff....I can't even begin to tell you how horrified I was when all this blood was coming out of her and not poop. I call the pedi's office to tell them, bring that sample back to the lab where the blood was drawn, tell them. I keep checking the online portal the practice has for lab tests (they were testing for e coli, salmonella, etc). and nothing, so I go to bed.
Around 9:30 (yes I go to bed with the chickens, breast cancer drugs do that to you), the phone rings and it's the pedi on call doc. He wants her to go to Hasbro (Childrens' here) and get admitted for very low potassium counts, I ask him about the blood, he says he didn't know anything about that. After I get her packed up, the phone rings again, this time it's her pedi telling us she has to go to Hasbro and be admitted for low potassium. I tell him we know that.
Head to Hasbro, get there around 10, go right into the ER into a room......they get her on an IV, now mind you she's still puking every hour or so and has had nothing to eat in days.....they do x rays to look for a blockage, they run bloodwork, then she starts with the bloody diarrhea.....they want her in the PICU but there is no room.....we finally get admitted to the PICU at 4 pm, so she's still puking and diarrhea, there's no shower in the PICU, there's no bathroom, just a commode and she is the sickest kid you've ever seen, and upset because people are seeing her sick and with no clothes on. She finally settles down with lots of meds to rest. At 2 am, they come in make us move (babies take precedence in the ICU). They move us to the 5th floor, generally no sick kids up there and it's the chemo floor so the nurse ratio is lower than the other floors (1-2 in the PICU, 1-3 on the 5th floor, but they have trainees, who cannot work with the chemo kids, so they assign 1-2 of them to her).
She ends up with a transfusion, more tests than you can imagine, they want to scope her but can't until her potassium comes up, and with that, all her other counts are way off, so now her feet are all swollen, she's still go so much bleeding the transfusion pretty much came right back out of her. She's now got a Foley and a pick line, one night I counted 15 bags on the IV pole with 4 pumps running.
At this point, it's snowing like crazy out. She's still puking and pooping blood every 2-3 hours, and now she's upset because all these people are looking at her, she's very shy and she can't keep underwear on, she has to change her johnny constantly, etc. I tell them why not get her up every 2 hours so she can make it to the bathroom (now that we are on the floor, we have a bathroom). So we do that. On Saturday, her potassium levels have come up, but they don't run scopes on Saturdays (this was around 7 pm) so I became Becca's crazy mom. I've had no sleep for 4 days, my kid is incredibly sick, and I can't understand what the f#$@ constitutes an emergency when she's pooping blood every 2 hours and needed a transfusion....I ALMOST carted to her Boston Children's but it was snowing again and she was so sick, it would not have been safe to move her. They were actually trying to move her back to the PICU but the nurses told them she was better off with them.
GI sent 'pretend baby doctor' up to deal with me...I still don't get the hierarchy of the hospital, there's the attending, the resident, the fellow, etc. the ones that were not real docs yet (who were like 25 years old) I referred to as pretend baby doctors, it would have been nice to have some sort of 'scorecard' because at one point, we figured out we were dealing with well over 70 doctors (all told) and countless nurses. So it seems it is the hospital policy, not GI about the scoping. Another thing about the doctors, you get who you get and we really lucked out. Her GI doc is wonderful. She's a researcher and been at this a long time.
Her scope was scheduled for Monday. We also had endocrine, surgery, and too many other specialists to mention hovering. One of the fellows was a nice woman, but a little on the 'icy' side. Another one was from far away and her husband was in Michigan. They do the scope and Bec being Bec has asked the icy woman to hold her hand while she goes to sleep. She was actually the one doing the scope under the direction of her GI doc (the good one).
GI doc comes out about an hour later and says it was the worse case she has EVER seen in 25 years of practice and tells us it's Ulcerative Colitis, There is no damage any place else, and she did not get to see ALL of her small intestines. So she says she wants to start her right away on the Remicade (she's been on prednesone for days, and a bunch of other drugs for the nausea, etc.). The icy fellow is missing, when she comes out it was because she promised Bec she'd still be holding her hand when she work up and she did, then she tells me that's her favourite patient.She says she's going to 'jump' over all other drugs and go right to Remicaid because it's so bad.
After the scope, her doc leaves on vacation. She calls EVERY DAY to talk to her/me. She also leaves the other guy in charge. So after the scope, she's till on prednesone, so I asked him about it and he tells me that she's doing so well on it, he's going to leave her on it. Really? Still throwing up and all kinds of blood every 2 hours? Her other doc said Remicade, oh no, he feels this is better. She now also has a pic line and a catheter. I count 15 bags running off 4 pumps on her IV pole. And now all her counts are way off, so her feet are swelling, she ends up with ingrown toenails and we have to get the podiatry team involved.
They end up putting in an NG tube to vacuum the fluids out of her stomach, she's also on Adavan and Benedryl for vomiting, and it keeps it a bit in check as long as she gets them on time, but apparently he changed that to PRN so it lapsed.
She has a few more tests, one was with contrast, which she threw up all over the place in the radiology department because there are no nurses there, we had no bucket for her, she lapsed on all her meds because we were down there for 7 hours.
4 days into her vacation, she had such a bad night and was so sick, the nurse had to change her scrubs, they had to call in housekeeping to clean her bathroom. The other GI doc comes in on Friday and can't even look at me and says well when you need to have another transfusion, it's time for the Remicade, it was all I could do to keep from choking him. In the end, he cost her another 10 days in the hospital. Now she has an NG tube to keep everything out of her stomach because she's still throwing up. Her pancreas counts are up, so she needs an ultrasound for that (result of the now used TPN). Her main doc comes back from vacation with a Florida sweatshirt for her and a card where she wrote she was the bravest girl she'd every met.
And Bec is always Bec. She smiled through everything (just one breakdown, the night I was crazy mom). She had the nurses fighting over who had her, and she was not an easy gig. But she was so pleasant about it. Can't say enough about the nurses either, from Bob (who was never her nurse, but on the floor) who would come in and steal her flowers, pretend to wash his hair in her toilet, to Maria, who washed her hair in the bed one day, Kendra and Jen were her favourites......all told, she was in from 2/2 - 3/2 and we still saw nurses we hadn't seen before.
She has lots more tests, upper/lower GI with contrast, x ray, ultrasounds for blockages, etc.
Bec's pain threshold is unbelievably high and now they've had to get out the morphine for her. GI says that the thing with UC is that if they take out her colon, it's all over, she's cured, which is something to think about when you see what is going on in front of you. Takes them a week to recoup from the other GI doc's mistake. She finally gets her Remicade. We stick around for another round of Remicade as well.
There was a lot more stupid stuff (like doc from hell insisting she eat real food because she's throwing up anyway and orders her a full breakfast when the kid hasn't had solid foods in going on 3 months!!!) that happened. Finally a month to the day she gets to go home.
She sees GI a week after she gets out and they schedule an MRE for her the following week, just to confirm the diagnosis. Her doc has this inkling that it may be Crohn's and not UC because there is a 1" section of her colon that is fine. Her entire colon is destroyed, but there's this 1" gap and she said that's indicative of Crohn's. The MRE is on a Sunday, we have GI appointment on Monday. Go to GI on Monday (after they call the house to confirm we are stopping in BEFORE Remicade, I tell them, we don't have Remcade, they ask again to make sure we stop in GI first).
Get to GI and her doc says they are admitting her. She had an abscess. They didn't see it before because it was behind where the scope starts looking. It's in the worst place possible because it's so close to the sphincter muscle that if it gets damaged, she'll be in incontinent the rest of her life.
She immediately 'lobbies' for the 5th floor. We now have a new crop of 'pretend baby docs' on service as well as a new surgery team. So it's better this time as she's not really sick, though she's hooked up to IV antibiotics. After a few days, they aren't doing the trick so the new surgeon says he's going in to take a look. He ends up putting in a Seton (drain) that runs from inside to outside to keep it open so it doesn't get more infected. She gets another dose of Remicade and goes home (and yes missed Taylor Swift coming to visit by a few hours). They added an older Crohn's drug to her routine as the Remicade isn't working as well as they'd like. The side effects are horrible, but there's nothing you can do. She now has an 80% leukemia risk. No immune system for the most part.
The rest of the summer has been back and forth to GI and surgery (to continually get the Seton cauterized) and Remicade land, where her fave nurse, Kendra, now works. They took the Seton out mid July. She has a pill organizer because she has so many things to take. A lot of her hair has fallen out, her ponytail is 1/4 the size it used to be.
Last week, they admitted her (again she lobbies for the 5th floor) to repeat the scope as they like to wait at least 6 months to look again. She ended up in for 4 days total. It looks a lot better, but has a long way to go. The day after we got out, she ended up in the ER with bleeding as the abscess is still nasty looking, so meds were changed again. They will be doing another MRE soon to look at the fistulas (she had 3).
It just sucks as a disease, and it sucks even more to 'dump' this on a kiddo that already has challenges in life. You also meet well meaning people who have mild variations of the disease and tell her things like 'oh I just watch what I eat and take steroids when it flares up'. Her doctor did tell her she would never be that person. The semi good news is Remicade is fairly new and CCFA spends 95% of their donations on research, so there's bound to be something coming down the line at some point. We raised over $5000 for CCFA last month, so every little bit helps.
Her GI and Surgeon have both said they are in no hurry to send her over to the 'adult world' of medicine and as long as we have them, regardless of our pediatrician, she can continue at the children's hospital (it does 'help' that she's special needs). The nice thing is the hospital is not huge, so she/we know everyone there. There's only 1 person in admissions, the ER nurses all remembered her (docs are on rotation because it's a teaching hospital, so they are not as constant, but we were admitted for so long, she saw everyone (rotation is 2 weeks)), and the 5th floor nurses of course all knew her.
Oh and yes I still have stage 3 breast cancer, which I'll say is NOTHING compared to watching this.
