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September 23, 2013 / Tara

To the Parents of the “Healthy Kids” Out There

I think I’m having a pity party. My daughter is inpatient again at Children’s Hospital for I think the 10th time this year. I lost count. Most of them a week or more. One visit being 7 weeks and so far this one we’re on week 2 and counting if you don’t count that one day she made it home and had to come back to be readmitted the next day…blah. But as she’s sleeping away in her hospital bed and I’m checking email I’m starting to get very depressed. So instead of just sulking, I decided I’d write a blog post about it. Well, here goes….

So in my inbox is an email from one of the mothers at A’s school. Now, mind you this is one of the mom’s I refer to as the Stepford Moms as it is. Kind? No. But trust me if you knew some of the parents at her school you’d understand the level of my feelings of inadequacy. Anywho, this mom is emailing pictures of her daughter’s birthday party to some of the parents. And she emailed saying “Thank you for coming…etc, etc.” Trouble is, not only was my daughter in the hospital during this party, she never even got invited to this party.

I don’t know how they do it at your child’s school but at mine the kids can pass out invitations in the class either to all the boys or all the girls or everyone. And if that doesn’t work for them they pass out invitations separately outside of school. They are only in second grade, generally they invite everyone. But this time my kiddo did not get invited. From the pictures it looked like about every girl in the class was there. I feel pretty sad even though I don’t even know if she would have wanted to go if she wasn’t in the hospital. I can half assume that the mom might have thought A couldn’t do the fun activities they had planned like riding a horse (yes they had a horse at this 8 year old’s birthday) or maybe she figured A wouldn’t make it and didn’t want her to feel bad so she didn’t invite her? But I just went through this with my sister this past summer who “uninvited” us on a family trip and invited her sister-in-law and her family instead because she assumed it would be too much for us. Now in all honestly, I probably would have opted out of the trip but I would like to have the opportunity to make that decision. I would like my child and her father and I to decide what she/we can handle. And all the play dates that I see my nephew (in the same class) going on this year but my daughter hasn’t been invited to any.

There are too many things she is missing lately and it is really weighing on me. Like today is picture day, so she won’t be in the class picture again. She can’t play soccer because she isn’t physically able this year and besides, we never know when we are going to be in the hospital. She won’t be there for Grandparents Day on Friday when all the kids put on a program for the grandparents, AGAIN. So she misses out on enough stuff.

Please parents give her the invite and don’t assume that because she is in the hospital a lot, she can’t do play dates or that we can’t take her anywhere.  Being in the hospital so much is isolating enough; on all of us. Please don’t add to it by excluding my child. She deserves better.

July 26, 2013 / Tara

Back in the Hospital

Sitting in ER waiting patiently for a room

Sitting in ER waiting patiently for a room

Well we knew it couldn’t last forever. My little daughter made it almost 7 weeks at home but ended up with a line infection and is inpatient once again. Thankfully she’s doing well and recovering nicely. They will pull her central line next week. Still figuring out what will happen after that. Hoping she won’t need another line placed but she just started weaning off her fluids so its too soon to tell. They are actually giving her pedialyte through her g-tube overnight now. That started yesterday. So if she can do well with that, the venous access may become a non-issue. Things are happening quickly.

Funniest thing was when she and I were taking a walk around the hospital and her dad came back from going downstairs or something and she saw him and said “Daddy’s home!” Yep, the hospital does feel like our home considering the almost 7 weeks she just spent at home was the longest she was at home in a row all year. We’ll see if we can top that when we get her home again. Of course we already have an admission for testing planned on 8/7, so it’ll have to be after that. I do think there should be some frequent flyer miles at the hospital I can rack up. Maybe get points I can turn in for free parking? I almost killed the valet people yesterday because I was so frustrated with how much we have to pay to park. There should be a cap for families who have sick kids. It’s outrageous.

But we have to be thankful that she is doing as well as she is and that things are moving along like they are. Her fever at the beginning of the week was scary as hell and I am not anxious to repeat that ever.

Here’s a cute pic I took of her hugging daddy. Funny how dads are like the magical cure to what ails a kiddo.

daddysgirl

 

Hope you all have a great weekend!

July 12, 2013 / Tara

Behavior With a Chronically Ill Child

kids

Do you have a child with a physical disability or chronic illness? Do you find their behavior is out of control? Our seven year old was always quite the handful and quite honestly a little spoiled. Growing up with a set of grandparents right downstairs did not help the spoiled part at all! ha! And if you’ve ever lived with your in-laws you know what I’m talking about.

She was always somewhat unhealthy and we spent a lot of time worrying about her, fussing over her, giving her probably more attention than our other two kids. And she learned very quickly how to manipulate us. Oh boy did she ever! But now it’s become that much worse with all her medical issues and the surgeries, long stays at the hospital etc. She’s developed what is called medical trauma and her inappropriate behaviors have gotten worse. This not only affects her father and I, but her nurses, the providers when we have to go to visits and our entire family. What we have learned is that for some people, they experience trauma in their lives and have basically a PTSD response but the event is over and if they get help, they can learn to cope and deal with their feelings about the event. However, when there is medical trauma, for a chronically ill person, the events are ongoing and the trauma is repeated over and over again making it harder to find comfort and coping skills.

For our daughter, she experienced a great deal of trauma when ER personnel placed a NG tube without any type of sedation or explanation. Had I known how bad it would be for her (they of course tell you its nothing), I would have been a better advocate. Later when the tube slipped out of place and she needed it put back in, it took four people to hold her down. I never let them do that again. The next time I insisted she be given some light sedation which helped. But there were multiple next times and she wasn’t able to cope very well because she couldn’t trust that the doctors and nurses (never mind me) were telling her the truth. Every time they needed to do something, it was a fight. And we had to constantly fight with the doctors and nurses to get it. No child should have to be so afraid.

Now that she’s been home the longest she’s been all year (one month,  6 days!), we are still experiencing the residual effect of all this. For instance, at the dentist the other day it took 4 people to convince her to allow the hygienist to put fluoride on her teeth. Something completely painless, but she was afraid. We never did get to the x-rays that day. The amount of embarrassment and guilt a parent feels when their seven year old can’t sit through a simple dental cleaning, is mind-boggling. I may need my own therapy to deal with these feelings. The hygienist did ask what they could do to make it easier on her. Unfortunately it was at the end of the appointment, even though I had switched her to a Children’s Hospital dentist and told them I wanted her seen there because of all her medical trauma. Wouldn’t be lovely if folks communicated? Talking about her fears and anxiety in front of her only makes it worse so as much as I might have advocated better for her at the beginning of the appointment, there isn’t much allowance for that.

The behaviors at home are worse probably because she feels safe here. And I am her usual “punching bag” again probably because she feels safest with me. She is constantly testing the limits which is normal with kids but when it endangers their health adds that extra level of stress to the parents. I can’t just put her in her room and ignore her if she’s having a meltdown because I know she will potentially pull out her CVL or fall and injure herself. If it’s time for medications and she isn’t cooperating, it’s hard to just walk away “until she’s ready” because she has to have them. We are working very hard with her psychologist to try to work on not only her behavior but our responses to her. I think this is going to be the hardest work of all because it is virtually exhausting to deal with on a daily basis. I waver between feeling really badly that she has to go through so much and almost excusing her bad behavior to absolutely no patience or tolerance at all. Need to find that middle ground.

How about you? Do you have a child with chronic illness or a medical disability who is challenging behavior wise? What do you find works to balance their needs and your own for sanity?

May 4, 2013 / Tara

Yeah I Want to Be That Blogger

familyUgh. Yeah just saw yet another blog where I am left feeling completely inadequate as a woman, mother, homeowner…. just keep filling in the blanks. You know what kind I mean; the type of blog where everyone looks perfect from the mom to the pet dog. The kind where the house is not only clean and orderly but supremely decorated and there’s a pan of just baked brownies (from scratch) cooling on the trivet in the kitchen. Yeah, I’m lucky if I take a shower. I actually count the good days as those I took a shower. My living room shades are ripped because the cat is in heat and crazy and I’ve had no time to take her to the vet to get her fixed. My kitchen walls have paint splattered on where i was trying to decide a color last year and then never actually got to paint.

Are there really that many beautiful people out there or are people that dishonest? Knowing how many people there are out there with chronically ill kids, with chronic illnesses themselves, I can’t believe there aren’t more people like me. So where are the blogs for the folks like us? I’d like to see the blog for the person who isn’t necessarily whining about how crappy their life is but who is telling me “look it sucks that I have to give up sleep, barely eat and never put on makeup and no I don’t have a baby. I have a severely ill child who is never getting any better and this is my life. It’s hard, it’s painful and my house never mind my hair is a mess but I’m doing the best I can and here’s a tip I just figured out.”

Where’s that blog? Maybe folks want escapism when they go online? I have t.v. and Netflix for that (yep working on my Law & Order obsession on my phone every night now..Season 5 baby).  I want to feel like I’m not alone. I want to open up the internet and not see 50 pictures of fresh baked goodies (my kid can’t eat that and my tummy doesn’t need it frankly) or 50 “high fiber, low fat” diet tips (my kid can’t eat much fiber and the stuff we used to think of as healthy is now a death sentence) or a family photo where everyone’s clothes match to the nines (yeah, clean shirts are where again?). I’ve got one kid off in college who comes home in 10 short days and I’m panicked because I know that’s only going to add more turmoil to an already crazy life. One kid who has to stay laying down or her ileostomy turns purple and we might be headed right back to the hospital again (we counted she’s spent 69 days there so far this year) . And then my middle child who is an awesome kid and is generally ignored because he isn’t suicidal or chronically ill. Never mind my boyfriend of 12 years and I aren’t married ( long story) and our dog is getting old and peeing on the floor constantly and our cat needs a little snip snip. Is there a blog for a family like ours?

Maybe I’ll just go watch some more Netflix.

April 20, 2013 / Tara

How Was Your Winter? Thank God It’s Spring!

My daughter the ham

Before the hospital on a fun day out bowling.

Yes I totally fell off the blogging bandwagon. Life has gotten a little chaotic lately. I started doing some contract work for a small business a little over a year ago and that has just really picked up. Which is a blessing since I find work keeps me sane but since I also have needed the money, that takes up alot of my time now. I recently begun writing some of their blog posts as well. I am not quite ready to share those with you yet though. ha!

The other thing that has got me very occupied is my youngest daughter’s health. In September she started to have more and more problems. She was constantly constipated (though going almost every day), distended in the belly and in pain and nothing was helping. Her GI felt strongly that she had a GI dysmotility and was trying very hard to get us in to the motility clinic at Children’s Hospital in Boston. There are very few doctors who do these tests and none at the hospital here near us. We got one “preliminary” test done in August but the motility doc we saw didn’t feel it was a true motility issue. She passed the test and he wanted her to see one of their GI’s who specialized in IBD with kids with primary immunodeficiencies.

Flash forward to October and she was still doing lousy. Waking up screaming in the middle of the night, so she ended up being admitted for a bowel clean out with the NG tube and all. Not fun by any stretch. This caused a lot of trauma for her as they didn’t offer us the choice of having her partially sedated or anything, just held her down and put the tube in. Twice, as it fell out.

Went home, not doing much better after 5 days. Not able to eat much, vomiting here and there, in pain all the time. So back in she went in November. Same thing, tried to clean her out, got her most of the way cleaned out and sent her home. I was watching her fade before my eyes as she lost a ton of weight and was getting so pale and had no energy. It was so scary. She stopped going to school as we couldn’t even keep her awake all day and she was in pain. I began home schooling her in the hopes that I could keep her in line with what the other kids were doing in first grade and she wouldn’t have to stay back. I will say that I love her Gastroenterologist, we have developed a great relationship, but the inpatient doctors at the hospital basically saw black and white and not that there was something else up with this kid. I now have enough experience with the hospitals to know that is the case in many of them. Her X-rays looked ok, she had had an MRI of her intestines which looked mostly normal, they just wanted us to wait for this motility testing that might or might not come.

Finally, we got the call to see the other GI at Children’s and had some hope that maybe someone would be able to do something to help her. He put her on more meds and said he really did feel she was not an IBD case but a motility case and said he would talk to the motility specialist about her and get him to set up testing. I didn’t particularly like this doctor because he kept pronouncing my daughter’s name wrong but hey-at least he was going to bat for my kiddo! A few weeks later they set us up with an appointment for inpatient testing to do a colonoscopy, endoscopy and motility testing. I was hopeful again.

Well the big day came and though she had to suffer through more bowel prep (yuck) and was not able to eat, she knew this was important. She too was sick of feeling miserable. Dad and I had planned it that since only one of us could sleep in the room with her, I’d go to the hotel next door and get some sleep, something I was sorely missing. They started her on a bowel clean out and though they gave her the option to drink the GoLytle and she has before, she couldn’t get enough in by mouth, so a NG tube was placed and they continued the clean out that way. At about 4:30 in the morning on 1/31/2013, I got the call. My daughter was in terrible distress, her saturation rates were dropping and they had done an x-ray only to see free air had escaped into the abdominal cavity. They would most likely be taking her in for surgery. At first, when I hung up with her father I had that moment where I thought “nahhh” that isn’t going to happen, we’ve been through this before where they say she needs surgery and then she doesn’t. I was tempted to lay back down and get some more sleep. But 10 minutes later the phone rang again and he was telling me they were going to be taking her down for emergency surgery as soon as they could. The fear being that her bowels had been perforated and stool could be leaking out inside. I don’t think I ever got dressed so fast. And if you like me, have some social anxiety, you know how walking in a city alone, never mind in the dark would normally freak you out. I could have cared less right then. I just wanted to get back to my baby.

The doctors were all in her room when I got there and I had that moment of fear but other than being in pain, she was okay. They explained to me what was happening and that she had to be taken down for surgery right away. I signed consent forms and we went down with her to the pre-op room. It wasn’t but 10 minutes before they were prepping her and giving her a sedative and we had to kiss her goodbye. She didn’t even fully understand what was happening. Luckily she was distracted by the pain and then sleepy enough not to be scared. Her dad and I were escorted to the family waiting room and he just about broke down. When you see a 6’2 guy almost in tears, it’s very scary. The nursing assistant gave him a big hug. She was such a doll. I wish I knew her name so I could have written her a thank you.

We sat in that room for over 6 hours. The doctors would come out periodically as the scope of the surgery changed. They had to cut her abdomen open from navel to almost rib cage as she is pretty small and take out the intestines to search for a tear. Luckily they didn’t find any but they did find that the walls of the intestines were stretched about as thin as they could go. Her intestine was completely dilated and the only option they saw to relieve the stress was to perform an ileostomy, where they separate the small intestine from the large intestine and bring the end of the small intestine out to the abdomen wall, and through so stooling will take place from that point. This would allow the colon to heal. Not knowing much, we of course gave our permission. Who is prepared for that? They told us it might be reversible but I have since learned that 60-70% are not.

They next came out to tell us because she was going to need to be on IV nutrition for a while and probably several meds, they would like to insert a PICC line so they wouldn’t need to keep placing IV’s. We of course gave our go ahead on that one.

They came out and told us she was fine…oh no wait, they didn’t. They actually forgot about us. Ha! We were getting anxious and he went to ask and they had already started wheeling her to the surgical ICU. Not their banner moment. She stayed doped up for a day and she was intubated for 2 days to give her oxygen support as her stats were not great. She stayed in the surgical ICU for about 4 days and then was transferred to the regular surgical floor.

This began a stay at Children’s Hospital of seven weeks, count them, yes seven. We went in for 3 days of inpatient testing and got to stay for seven weeks. In the time we were there she had numerous procedures, a blood transfusion, two more surgeries, a g-tube placed, the PICC line converted to a central line (Broviac) and countless tests and meds. They discovered with biopsies that she has severe inflammation in the muscle of the intestines which I guess is very rare. Yay, another “rare” thing. LOL

I have to say she handled most of it better than us. But with all the medical procedures and the incident in October this somewhat high strung child became a very hostile child, at least when anyone needed to touch her. So she is now in therapy for “medical trauma” and I hope it will help because she has become her own worst enemy. She has bounced back twice, once for 4 days once for 6 but the space in between the hospitalizations is growing. So I am hoping this time she is home for months.

My brave girl. Always smiling even after weeks in the hospital

My brave girl. Always smiling even after weeks in the hospital

She is TPN dependent which means most of her nutrition comes in liquid form via her central line though she is eating more now that they started her on prednisone to treat the inflammation. She gets extra fluids every day as well via the central line to prevent dehydration. We are hopeful she can be weaned off the TPN at some point. She had already stopped growing height wise a year ago, so this is just more fuel on that fire. But we are hoping that fixing the malnutrition that must have been happening with all this, will fix the growth problem. Her growth hormones are not. She has developed osteopenia so we have to be careful for fractures. And our biggest issue right now is just trying to find a way to let her be a normal kid when she is having issues constantly with her ostomy pouch and the stoma prolapsing still quite frequently. But this last week, we have seen some great improvements and it makes me think that maybe there is a light at the end of this tunnel.

While she was at the hospital I met families of kids who are not so lucky. There was one family who had a two year old son who had been in the hospital for about 20 months total out of 24. Another family who had a teenage daughter who needed a liver transplant after she came in for the flu. And then there was the Boston Marathon Bombings that happened during our last admission. Eight year old Martin Richard who was killed will never be going home with his family. His sister is probably going to be changed for life and so many other children (and adults) who were injured, will never be quite the same physically or emotionally. So I don’t want to have a pity party. When I start getting depressed on days like today where her dad brought her over to grandma’s house with her all excited because she’s been missing grammy. But then her ostomy pouch starts falling off and stool is leaking everywhere and dad doesn’t know what to do so he has to bring her home after only about 10 minutes, I remind myself that it could have been so much worse and I might have lost my little girl that night. Our lives are definitely changed, especially my little girl’s but she still has a life and things can get better. And it’s Spring!

October 17, 2012 / Tara

Open Mouth Insert Foot … Again

Oops I did it again. But this time it was at the youngest’s school. Well she finally made it back there today after an almost 3 week absence. Pneumonia, swollen glands, GI issues- we had it all going on. But today it took a little prodding to get her to want to go to school. Oh who am I kidding- it took all out bribery. The first grade teacher is a little strict and the kids were all afraid of her at the beginning of the year. Well now my daughter has realized the teacher is really not that bad and likes her but I think she forgot that over the last few weeks. So we were late of course and I had to bring her into the building to get a late note. Then came her first grade class marching down to the gymeterium (do you have one of those at your school? The combo gym/auditorium/cafeteria they have to use for everything?) for the book fair which she was psyched to now get to attend. And there was much hugging and “ooh you’re back” going on which warmed my heart and definitely made her transition easier. I hung around to help out with the picking of the books and as always got roped into helping the other kids too (but they’re precious I didn’t mind).

After the craziness had calmed, several of the other mothers and some staff remarked how happy they were to see my daughter back and asked after her health. One mom who volunteers in the school lunch program made a big fuss over my daughter and how she posed like a model when she complimented her on her new glasses,  to which I replied something along the lines of, “Thank you. She really is a character. There is not another one quite like her”, more tongue in cheek than being serious. One of the other moms who was helping out remarked “Well I suppose the same could be said of all of us” or some such thing.

Whoops. I think she is a little insecure about her son maybe. My youngest is a social butterfly and she has been around so many different adults (mostly medical professionals) all her life that she can keep up with the conversation pretty easily. I will be the first to say she can also be a pain in the rear end (you like how I cleaned that up for you?) and is very much spoiled. I don’t tend to brag about my children unless it’s something well worth bragging about. I actually always am shocked when other parents fawn all over my daughter right in front of their own kids, makes me feel bad for their children. It is just true that people flock to my daughter and she is an extremely entertaining and sweet little girl. Doesn’t mean your kid isn’t nice, smart or cute. Well maybe it does, I don’t know but I’m sure every parent thinks their kid is something special. I just happen to know mine is. And I’m not apologizing for that.

October 2, 2012 / Tara

Please excuse the TMI – Warning: Don’t read while eating

Do you find yourself saying “sorry if that’s TMI” alot? As the mother of a child with a completely screwed up GI tract, we spend a lot of time talking about poop around here. So I’m not easily offended. But I realize this is not everyone’s normal. I often have to backtrack on my emails and facebook posts when someone asks me how my daughter is doing because I’m sure they really don’t want to hear how she was up half the night having diarrhea or how her stomach is bloated so much she looks like she’s 9 months preggers. So you start typing it and then you remember your filter and you type instead “she’s feeling a little sick today”. Like you know how their kid is sick with the sniffles except your kid had an x-ray that the Gastroenterologist literally said “I’ve never seen anything like it. She’s completely full of stool.” Maybe we can get a copy and frame it eh?

So since this is my blog and I can talk poop if I want to, there you go. We spent our day trying to get a whole bottle of Miralax in 32 oz of liquid into miss princess. So she’s on her 4th straight day out of school and really I don’t think the results were spectacular. She still seems backed up. Yeah. TMI, sorry!

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