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The surgery to remove Aerin's hemangioma will be much more complicated and dangerous than they originally thought. Despite her 96 days in intensive care, this will be her first surgery and I'm having a harder time dealing with it than I thought I would. If y'all wouldn't mind, I'd be interested to read about surgeries your children have been through or that you've been through in your childhood.
I'm doing the super-lame thing and starting a thread and running to the store, but Aerin's asleep and Andrew's finally done working, so I just have to take advantage.
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I had a tumor on my left hand removed when I was 2 or three. Also had chemo They took out a lot of muscles though. So it's smaller than my right hand and not as flexable, but I can play left hand guitar.
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I had my tonsils and what not taken out as a kid. Don't remember much about it, except that I got a ton of treats, waited on hand and foot for awhile, and got a new California Raisin set of pajamas.
Posts: 21898 | Registered: Nov 2004
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I had my adenoids out and ear tubes put in at age six, but it wasn't very exciting. Over two years later while in the ENT doctor's office yet again (I had all the kid books memorized), he decided to put tubes in again... that very day. He must have had a boring day planned. So he shuttled me in and out of rooms between other patients and had put tubes in both ears by noon. I always said the worst part was the fact that there are two ears, and I knew I had to go through each step twice. When we got home I settled down to play a game on the floor (my legs were shakey but I wouldn't admit to it) and my mom had a nervous breakdown on the phone.
Actually, the worst part was that afterwards I never was quite as good in his office as before that day. If he had to probe deeply into the ear or suction something out I shook on the inside. I even cried once--my mom was so embarrassed. I was too. But really any ear interventions made me relive that tubes procedure, for years. Over now... I'd still rather have my eyes poked at than my ears, though.
Posts: 1990 | Registered: Feb 2001
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I'm sorry you're worrying, Mrs.M, and I can understand why you are - but Aerin is going to be in the best possible hands throughout the entire procedure. I can imagine how scared you must still feel, though. I wish I could give you and your entire family a hug and sit with you in the waiting room.
Aerin is so beautiful! I know she's going to come out of this just fine.
I don't have any childhood surgery stories, fortunately, but a good friend of mine was born with completely non-functional kidneys and had one of her mom's transplanted into her at age 2. That counts, right? The surgery had no complications whatsoever and she's lived to see the age of 24 with no ill effects, other than being very, very small in stature (about 4'7"). Now her doctor has told her that she'll be needing a new transplant sometime between six months and two years from now, but she's not worried - kidneys are the most frequently transplanted organ, and they're apparently relatively easy to get, as these things go.
I am sure Aerin will come through this with flying colors and will be back home with you in no time. Hang in there!
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Over now... I'd still rather have my eyes poked at than my ears, though.
Ew! Yeah, no joke. I had an eardrum ruptured when I was about four (some kid in my preschool screamed so loudly in my ear that it ruptured! Fun!). Just going through examination and treatment for THAT was about as much ear-torture as I ever want to undergo in my lifetime. I can't imagine what a surprise ear tube insertion would be like!
Posts: 1006 | Registered: Jun 2006
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My niece Madison has spina bifida & hydrocephalus, and has had *thinks* four surgeries this year? Yeah, four, I think. It gets easier. I was a complete and utter wreck the day she was born, though, because I knew she would be having surgery almost immediately. I was at work in downtown Chicago; she was born in Evanston, and then driven to Milwaukee for her surgery. I felt so helpless, being so far away. It's not like there was much I could have done, anyway, but I wasn't even able to be there with my sister to offer my support, which really sucked.
The first month or so of her life were very rough on us all. Just so much happening in such a short time. But we all survived it, and Madison's doing GREAT! She's a happy and healthy baby, which is all that really matters.
I did a lot of journal writing about her surgeries, at the time they were happening. I went through my journal and made the posts public, so you can read them if you wish. They're here, posted in reverse chronological order, so start at the bottom of the page.
I'll keep Aerin and your family in my thoughts. *loves*
Posts: 1805 | Registered: Jun 1999
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I had a cyst on my ear-drum that they did some crazy stuff to when I was 5 (i've really never asked for specifics). I had to go under (they gave my stuffed monkey 'friend' a bracelet and let him come down the hall in the gurney sp? with me which i remember to this day). I don't really know all the specifics, I just know I had some ridiculously high percentage of hearing loss before and hear like crazy now - and I really mean like crazy.
I remember just before going down the hallway, I remember the doctors talking to me in the surgery room and putting a mask over my face (i remember i wanted my mom but didn't cry about it, they were very nice) and I remember afterwards when they made me eat a popsicle (it was a red one, i still don't like them) to make sure I wasn't going to be sick or something like that.
No bad memories, just memories.
I'm thinking of you and your family.
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I just looked at the photo album again to remind myself of how beautiful she is.
Everything will be fine, Kira. I have faith in your doctors, and G_d (not necessarily in that order)
The only surgeries mine have had were ear tubes for the first two, and they were such minor procedures I don't think there is any comparison. I can completely understand you being nervous, but truly, I believe that precious daughter of yours will be fine. Posts: 14428 | Registered: Aug 2001
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This is nothing compared to what you are about to face, but my son is getting tubes put in his ears in the morning and I feel just a little bit anxious about it. Shouldn't be to big of a deal. They'll put him under and the procedure is less than ten minutes. But as a mother, I'm feeling for you, Mrs. M.
I'm sure all will be fine. I looked at your blog. She's a beautiful little girl. I know you can't help but worry; it's hard-wired into a mother's brain. But the worry will be unfounded. All will be well.
Posts: 293 | Registered: Sep 2006
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This thread had some of Mooselet's surgery story. Certainly not complete -- older Mooselet stuff dropped off the forum long ago. I'll search through the files on our older computer to see if I can find any versions of the earlier stuff.
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Don't worry, dude. I had an amputation-worthy case of staph when I was a kid, and the night before the surgery, the disease withdrew. American medical facilities are more impressive than their reputations would have you believe -- your kid's doctors are ridiculously well qualified.
Posts: 3293 | Registered: Jul 2002
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Mrs. M, I already shared my anesthesia experience with you, but I just want to let you know that I have nothing but good feelings about this surgery. I'm feeling no foreboding at all and I'm just sure that Aerin will be in excellent hands. But we'll be praying for her, and you, anyway. Seriously, if there is ANYTHING I/we can do, please, please ask!
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Also, I just talked to my mom about this, and she says that even if Aerin's arm function is impaired temporarily, she is young enough that there's a good chance that any impairment can be treated with PT. (My mom is an RN/OTR and works with kids who have to have all kinds of surgeries, so she's qualified to say that, I think.) She also has never heard of a kid who did not survive this surgery.
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I had my tonsils out when I was twelve, which is a bit late for that surgery, as I understand it. It hurt. Posts: 10645 | Registered: Jul 2004
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I think I had a hemangioma...if it wasn't that, it sounds similar. Basically I had a little knot of blood vessels on my arm that stuck up like a blister, and it would bleed a lot if I broke the surface of it. I ended up going to a dermatologist to get it removed.
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I had to get the bone set when I broke it. My tibia popped out of my ankle slightly, and the doctor was worried it wouldn't heal right. I remember I was reading 'Xenocide' until they made me give the book to my mom.
Posts: 1164 | Registered: Feb 2006
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My nephew's colon ruptured 2 days after he was born. There was immediate surgery that left him with a colosotmy.
When he was about a month old, scar tissue formed enough to block the intestines again, so he was throwing up everything he ate. Surgery took place again. I was in town the night that he was throwing up. We took him to the hospital, knowing something was wrong, beyond just acid reflux. They had a hard time getting an IV started and had to shave his head and insert it there. It was a very emotional evening. I drove home the next morning while he was in surgery. I hate being in the middle of nowhere when he was under. Everything was fine with the surgery.
At five months old (right as I moved to town), he had a 3rd surgery to reverse the colostomy. Everything went fine. He works nice and normal these day, except for extra bad diaper rash and potty training is extra rough. My sister-in-law believes that due to scar tissue, he can't feel when he need to poop.
These surgeries were 4 years ago. 2 years ago, he swallowed a nickel and it lodged in his esophogus. That day was freakishly similar to the day when he was a month old, throwing up everything he ate. He ended up having to be put under to remove the nickle. No cutting for that one, but still nerve-wracking for my brother and sister-in-law.
Everything went fine, and is fine. I won't tell you not to worry, because I know you can't stop worrying. I will tell you that my brother and sister-in-law's faith was well placed in Heavenly Father and the doctors, so I believe everything will go smoothly with your sweet Aerin.
Posts: 161 | Registered: Jul 2002
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Thanks, guys. It helps to hear about other children who have made it through surgeries. I want to be able to do whatever I can to make it as easy as it can be for Aerin and I'm know I won't be able to think of everything, but I also know that Hatrack will fill in the blanks. I think I'm going to get doubles of Aerin's favorite toys and donate them to the hospital after she's discharged. I want her to have her dolly and animals, but I am a big germophobe, so I don't want them in my house after they've been in the hospital. MCV is a large urban hospital, which makes me nervous germ-wise.
I went back and read about Mooselet, Papa M. Boy did it hit me in a whole new way. Reading it as Aerin's momma is very different from when I read it before I was even pregnant. It did me a lot of good. I was feeling like a hysterical loser because I checked on her all night long and because I keep having these flashes of the surgeons coming out to tell us that she bled out or that there were terrible complications. They're diminishing as I'm adjusting to the idea, but they're still in the back of my mind. I went and looked at a picture of Mooselet now and it did my heart good.
I also have a totally superstitious, irrational belief that this is a price we're paying because Aerin is so beautiful. I force myself to listen when the doctors talk about scarring, because I know that Aerin will care someday. But how her shoulder looks couldn't mean less to me. I'd rather have a homely baby who's healthy than a pretty baby who's not.
xnera, I read about your neice. So many of your family's experiences are so similar to preemie experiences (particularly the reactions to the news). It sounds like she's doing exceptionally well and I am so happy for y'all.
DaisyMae, how'd it go with the tubes?
Lalo, you made me smile. I secretly love being called dude and calling other people dude.
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My brother had tubes in his ears when he was little...I think they put them in right in the office, while he was awake. It helped him a lot.
I got hit in the head with a golf club when I was 3 or 4 and had to be rushed to the emergency room for stitches. I was awake...I remember pretty much everything. It didn't even really hurt. I was more upset that I missed that night's Star Trek. The scariest part of the whole thing was having them cut the stitches out after things had healed. Apparently, this was in the olden days, when stitches didn't dissolve.
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Oh, my gosh -- don't feel like a loser for checking on her all night! My "baby" is fifteen, and I still sometimes listen for breathing. Posts: 628 | Registered: Nov 1999
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Mrs M, my now 4 year old daughter Rainbow had surgery when she was 18 months old to correct her hip dysplasia. Essentially, she had no left hip joint and the head of her left femur was nonexistent. I've since learned that this runs in our family...my cousin's new baby girl had clicky hips at birth and wore a pavlik harness for her first few months. Both our daughters are fine now.
The surgery was major, and for weeks ahead, and all during, I had terrible fears that she would die. It was everpresent. I didn't want to talk about it because I was afraid that talking about it might make it come true (superstitious thinking ). Anyway, the 8 hours of surgery and post-op are a blur of prayers in my memory. My husband worked on his laptop the whole time. I prayed. I think that's all we were capable of. He needed to work.
We spent 5 days at Children's in recovery. Very long days I won't forget. The biggest lesson for me was that I should have taken better care of myself. I was exhausted when we got home, which left Rain's care almost entirely to my husband the first day. I didn't eat much those 5 days nor did I sleep well as I slept at her bedside every night. The room was shared with 3 other girls, one of whom was about 8 or 9 and was in significant pain (her appendix had ruptured). She cried most of the nights. (can't blame her, that's just what the situation was and they couldnt' give her any more pain meds as they needed her to be up and around)
A second minor surgery was performed 6 weeks later to check the progress of the osteotomy. Rainy was put under, her armpits-to-ankles cast was removed and replaced by a smaller (lighter!), midtorso-to-knees cast. She stayed in the second cast 3 weeks, then went into a hip brace for 4 weeks, and has been running ever since. She's doing great now and has a sexy 5 inch scar along her left hip that she likes to show people. We go in for her annual checkup in a few weeks, and my hope is that we'll hear that she doesn't have to come back for another 5 years or so.
I hope that helps. *hugs*
Posts: 5948 | Registered: Jun 2001
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My son's tube's were put in without a hitch. I was actually much more emotionally affected than I anticipated, seeing him in his little gown, hooked up to the machines and loopy from the drugs, and it made me think or you, Mrs.M. I kept thinking about the courage it takes to send your little one into surgery. Radley's tubes were routine and extremely non-invasive. All is well. He had a bit of a hard time coming out of the anesthesia, but other than that, we've had a pretty normal, if not laid back, day.
I'm sending good thoughts and prayers your way. (((Mrs. M and Aerin)))
Posts: 293 | Registered: Sep 2006
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jeniwren, I remember reading about Rainbow's surgeries. Bless her little heart! I can't imagine having a baby in such a large cast (or being in one myself). What an ordeal for y'all. I'll pray that her check-up goes well. I need to find out what their PICU is like - they kept everyone in private rooms at St. Mary's. I think they might do that at MCV, too, because it'll be during RSV and flu season.
DaisyMae, I'm glad to hear it went well. I don't think there's any such thing as a minor procedure when your children are involved.
Thanks for the support, everyone. I'm feeling a bit better today. Aerin had a good day and really enjoyed the extra Cheerios and fruit I gave her to pack on the pounds.
Posts: 3037 | Registered: Jan 2002
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Mrs. M., the most intense experience I know happened to my husband's cousins child. He had a rare blood disease, and ended up needing a bone marrow transplant. Beofre the transplant, they needed to kill off a lot of cells with radiation. He had all of thbis between six months and a year and a half. It was intense, and if you email me off list, i can out you in contact with the mom. They lived at the hospital for months. It was touch and go, and he is a healthy little boy now(3). It was really, really hard. edob63@yahoo.com
Posts: 10890 | Registered: May 2003
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quote: DaisyMae, I'm glad to hear it went well. I don't think there's any such thing as a minor procedure when your children are involved.
This is so true. I remember the doctor telling us that the surgery Mooselet had at 5 1/2 weeks would be minor. No surgery on my 5 1/2 week old son is minor to me!
Posts: 399 | Registered: Sep 2002
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When I was almost three I was bitten on the face and neck by a dog. They made my mom leave while they did the surgery, because they had to cut of some healthy skin so that the scar would be even. Two years later, if you asked me about it, I would tell you the whole story--and point at the wrong side of my face, because I couldn't even remember where I'd been bitten. Apparently it was VERY traumatic.
There's barely a scar now.
When my little brother was in kindergarten, he got poked in the eye with a stick. (He and some other boys were throwing them like darts--smooth move, eh?.) He had to go through immediate surgery, and then wear an eye patch for a while, but he can see just fine now.
He also had a hernia when he was a little older, like 7, I think. That surgery went well, too, and left us with a great new family story:
Whenever we got really sick, our mom would buy us a new toy, and he had decided he wanted the Alien-Predator double-pack of action figures--His favorite thing at the time. So as he was coming out of the anesthesia, my mom was sitting there holding his hands, and he started mumbling "Alien-Predator Double Pack! Alien-Predator Double Pack!"
I guess his subconcious likes action figures, too.
Posts: 368 | Registered: Dec 2005
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Sasha was born with a minor abnormality. Lets just say that it would have effected his aim, when writing his name in the snow.
To correct it required surgery in a very sensitive area. Just thinking about I, and most males, cross our legs in sympathy.
They gave him a cool aide that let him relax. Then they gave him a pill that put him very relaxed. Then they gave him a shot to put him under.
Then they put him in a cute little red wagon and rolled him away.
At this time Sasha spoke very little English.
There were minor complications. A three year old just doesn't understand what a Catheter is. Removing it was about the only traumatic thing that happened.
Too this day he is a bit nervous when doctors check him in that area, and he takes "going to the Pee-pee doctor" as a threat. It also may be the cause of some bedwetting that occasionally pops up.
But he is and was fine.
Posts: 11895 | Registered: Apr 2002
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When my sister was 6 years old she had emergency abdominal surgery - emergency as in she would have died if we'd gotten her to the hospital twelve hours later. She'd been sick for a long time, almost a week I think - throwing up, not keeping anything down - when they took her in. Turns out she had a twisted intestine; by the time she got to the hospital she was in shock. They didn't know what was wrong and thought it might have been her appendix, but to be safe they made an incision from an inch or so above her belly button down to the top of her public bone (instead of just cutting the 2-3 inch incision necessary to remove an appendix). They ultimately ended up removing several feet of her small intestine and her ilio-secal (sp?) valve, which has left her with what will likely be a lifetime of gastrointestinal trouble. (It's mostly controllable with diet, vitamens and fiber but if she has too much of the wrong thing it gets messy and painful quickly.)
She was in the hospital over a month and had some some more less-emergency but still unplanned surgery at age 9. My parents were a wreck and I remember visiting her in the hospital and having some jealousy issues (I was 8 years old at the time, a tough age to have so much parental attention on a younger sibling without really being able to understand the weight of what was going on.)
What I do know is that she got through the surgery wonderfully, despite going into shock, and the doctors were extremely competent - they saved her life. And this was totally unplanned, major surgery that required months of follow-up care. While I can't imagine how nerve-wracking it must be, you should have faith that the doctors are very capable of handling problems much more complex than the ones they will face when they help little Aerin. If I were you, I'd go into it with full confidence.
Posts: 1784 | Registered: Jun 2001
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I also have a totally superstitious, irrational belief that this is a price we're paying because Aerin is so beautiful. I force myself to listen when the doctors talk about scarring, because I know that Aerin will care someday. But how her shoulder looks couldn't mean less to me. I'd rather have a homely baby who's healthy than a pretty baby who's not.
Moms are so sweet. A scar on the shoulder can be hidden, anyway. And scars received in babyhood usually heal to almost nothing by the time any child is old enough to care. My friend with the kidney transplant has a barely-visible scar. You can tell it's there, but it's faint. The only real give-away is the fact that her navel isn't centered on her abdomen - it's a couple of inches to the side of her midline!
Please try not to worry too much about scarring. Like you said, health is what's important, and she won't have to let anybody see her scar if she doesn't want to. She's quite lucky in that respect, really! Luck and beauty and an awesome family...this kid has it all. Posts: 1006 | Registered: Jun 2006
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My younger brother (not the one who posts here) had emergency surgery to correct a telescoped intestine when he was a baby. He was pretty sick for awhile, but he healed quickly. The only lasting effects seem to be a slight scar on his abdomen and life-long freedom from the threat of appendicitis (they removed his appendix while they were at it). Most of the time, I don't even remember that he ever had surgery.
Posts: 3546 | Registered: Jul 2002
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My sister had a friend growing up (is it an Ashkenazi thing?) who had a hemangioma, although she was about 2 when it was removed. She's fine and a mom herself today. And that was about 25 years ago, so the technology today has got to be a lot better.
Posts: 159 | Registered: Jun 2006
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Oh, I forgot (that should tell you something) that my niece was born with a big egg sized lump on her neck. It wasn't a tumor, just a weird cyst thing full of fluid. She had it removed when she was 6 weeks old. She is currently 10 and the scar is all but nonexistent. You have to really search for it.
Posts: 293 | Registered: Sep 2006
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They're still trying to get her in for the MRA. Part of me wants to get this all over with now and part of me wants to put it off for as long as possible. All of me wants to wake up in the morning to find the hemangioma has magically vanished during the night.
I found Aerin's special bandages on eBay for a fraction of the price (only $35 for 10, including shipping - they're usually $143 for 10). I've gotten pretty good at wound care. I can apply a dressing that will stay on and clean all day in about 3 minutes. It will be nice to not have to do that anymore. One of the reasons I don't care about scarring is that the hemangioma is so huge and gross that even a big, puffy scar will be an improvement.
Chanie, I don't think hemangiomas are Ashkenazi. There doesn't seem to be much of a hereditary component at all. They are slightly more prevalent in preemies, but not much. There haven't been any in either mine or Andrew's families.
cmc, the surgery hasn't been scheduled yet, but it will most likely be in late November or early December.
Andrew does a very funny imitation of doctors examining the hemangioma. He'll come into the room and introduce himself as Dr. ________ (insert random stupid name), look at the hemangiona, and say, "I'm out." Then he leaves the room. I find it hilarious.
Posts: 3037 | Registered: Jan 2002
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Mrs. M, What type of bandages do you need? You wouldn't believe the sheer volume of medical supplies I've accumulated in the last 18 months (many of which were incorrectly ordered by the homecare company, so we can't use them and they can't go back).
Posts: 1480 | Registered: Dec 2004
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We saw the surgeon today and got some unsettling news. I don't have it in me to go into details right now, but I wrote a bit about it in Aerin's blog.
THT, you are so sweet! We use Mepitel silicone wound dressings. Thank you so much for your offer, but I don't think you have these. I was also able to get all the gauze I will ever need in my live on eBay for next to nothing, which was great.
Posts: 3037 | Registered: Jan 2002
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Aerin's surgery has been schedule for October 19th. Her pre-op is October 12th. The surgeon thinks he can keep it to about 4 hours, but he won't know until he opens her up. To be honest, I'm freaking out. I don't know how we're going to get through this.
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I can't imagine how you could not be freaking out. Our family will be praying for you in the waiting time as well as on the 12th & 19th.
Posts: 9866 | Registered: Apr 2002
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Mrs. M I don't know if I've really written about it much in detail, but my little brother was bitten by a rattlesnake when he was two and a half years old. I was about 7 and remember it more vividly than he does, especially what my parents went through during that time. An emergency has somewhat different dynamics when compared to a planned surgery. I almost think the emergency is easier, because you go into survival-parenting action mode, while with a planned surgery there is a lot more time to think about it before hand.
I got to witness this recently with a co-worker's grandbaby's. They were twins, a boy and a girl, however the boy's skull plates fused prematurely so they had to go in and separate them so that he didn't have undue pressure on his brain and eyes and they could develop normally. He has come through fabulously, but the anxiety level in the months before the sugery was taxing on everyone.
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((hugs)) Stephen my now 12 1/2 year old had a heart transplant almost 5 years ago (in December). Many here may remember it. It was the most nerve wracking thing. Before that he had at least 4 "minor" outpatient surgeries and afterwards he has had a yearly outpatient surgery called a cardiac catheterization. The momma fear never goes away! I still check breathing in the middle of the night on all 3 of my kids. The hardest thing I ever did was hand him over to the surgeons at the wee hours of the morning knowing what the transplant surgery would entail. Hundreds of prayers later he came out and was fine. Recovery was rough because he is so whiny when he's sick but now he is healthy, active and just as whiny His scar is fading as he grows and I tease him because it looks like a long nose down his chest
I know it will be hard but your faith will sustain you. If you ever want to talk or have questions feel free to send an email.
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It is hard every time (Mooselet has been under anesthesia 8 times). Since giving the "go ahead" for Mooselet's upcoming surgery (in November) I have had moments of "We have agreed the let the doctor do WHAT to our son?"
Posts: 399 | Registered: Sep 2002
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I have a second cousin who has had multiple open-heart and other surgeries, some emergency when he was less than 5 days old, others planned. I have to agree that the ones you have time to think about are probably harder on the parents and other family.
But I still have a good feeling. Aerin is strong, and she is going to be great through the surgery. (((hugs)))
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