Ok, I’m tired, I’m grumpy, I’m frustrated – and in need of a SpouseBUZZ vent!
Mother’s Day in the life of a ‘special needs’ mom is always interesting. Yesterday was no exception! I feel for special needs moms. They carry the weight of the world on their shoulders . I don’t consider myself worthy of this title anymore, as we’ve passed the chemo stage of life and are just ‘orthopedically challenged’ at this point. But it seems like there’s always something popping up – or in this case leaking out!
Migs comes in yesterday morning and says, "Hey, mom (oh, Happy Mother’s Day!) – I’m leaking!" Not everyday I get this kind of a howdy do! Turns out he woke up to find his bed soaked with lymphatic fluid leaking from his leg. Didn’t even know that legs could leak – no open wound, no coming through an old pin site, nothing – just a constant drip from his leg, like some sort of sick medical lymphatic water torture! (Where’s House when I need him?!?!?!) As luck would have it, nobody knew this could happen. Not the ER docs I spent Mother’s Day with…or the pediatrician I spent today with…or the Ortho surgeon I called in another state….or the Hem/Onc doc here in town who he’ll see tomorrow. So, just when you think you’ve seen every angle of this disease and it’s after effects – something new pops through!
What’s scary is the pediatrician didn’t know what specialty to refer us to for a lymphatic issue (FYI – Hematology). Guess that I should interject that I really liked her, she was personable and very concerned for Migs’ well being. She’s sending him forward to another doc when the General Surgeon wanted to just tell Migs to deal with it, that he’d have to have a leaky thigh for the rest of his life – over my dead body! So, we are hiking his leg up and applying and changing compression packs every few hours – keeping the pain at bay with narcotics (what part of THIS did the general surgeon think he was going to do for the rest of his life?!?!?!?!?!?!?!?!) and keeping him out of school to avoid a possible infection – esp. given that he’s having another surgery in four weeks!
I’m spending my ‘free time’ today trying to keep up with work and researching what could possibly cause a leaky leg…..Jeepers, it doesn’t get much weirder than that! The thing about having a kid with medical issues (OK, he’s 14, almost 15, not much of a ‘kid’), is that you can never relax. You’re never off the hook! I suppose it must stink for him too! Just when life is sorta going normal – splooosh, your leg starts leaking!
I’m really lucky to have good friends in the area – thank you guys for being there for me today and understanding my mental lapses. I wish they had a ‘good friends’ day! If you know a special needs mom – make her brownies/peanut butter cookies one day, just because – seriously, cookies are so good for the soul. Let her vent (thank you, work gals, Kim and Mike!) – and understand that she may not always be able to bring her ‘A’ game to a conversation when her mind is trying to sift through all the possibilities of what could be wrong, what she’s not thinking about, what she’s not doing.
So, for those of you who ARE special needs moms, how about giving some time tested and true relaxation/coping hints?!?!?! What techniques do you find that work best? What are the best internet sites for medical answers? What keeps you sane and helps you refrain from taking out your frustration on every medical personnel that you encounter!?!?!?!?!?!?!!?
How do you answer insane questions like, "What do you mean it’s leaking? Can you describe the leak? I just don’t understand what you’re saying." Seriously, how many ways you describe something leaking? He’s got fluid coming out the back of his leg – no wound, just a constant drip – what would you call that other than he’s sprung a leak?!?!?!?!?
Ahhhh, they keep my sense of humor on it’s toes!
About GBbear
Comments
Well, Gbear, I don't have much advice, but I can offer my prayers for you! I hope that this is resolved quickly for both of your sakes!
Thanks for reminding us of the "special needs" moms. You're all amazing.
GBear, hugs and prayers for you and Migs.
He's "leaking?" Like a blown gasket on a high compression head of a full blown Dee-troit V-8? I guess it's not something that you can "just add a quart" that you buy down at AutoZone, eh?
Gads GBear … I think of all folks, you've earned one of those Staples, Easy Buttons. The next time Migs comes in, just reach over and push it. There! That was easy!
Sorry — tell Migs his Uncle Toad sends his best … And to you, young lady … Happy Mother's Day!
Toad
Many hugs to you and Migs – you both are inspirations in my life – as is your entire family!
Seriously, appreciate the hugs and support – but was really looking for coping techniques! Hospital days are long and I'm exhausting my list of 'games people play at hospital' lists.
Any moms/dads out there who spend time in hospitals, counting to ten while dealing with doctors/staff – any advise would be greatly appreciated!
GBear – Happy Mother's Day to you. I am always amazed at the strength and courage of special needs moms.
I have two friends who are special needs moms. One has a son who is multi-handicapped and she has been through everything under the sun in his 12 years of life. The other has a son who has been battling cancer for 3+ years now and recently he has undergone surgery to straighten and fuse his spine (due to damage caused by the cancer tx). If you contact me, I will get you in contact with them if you'd like. They are wonderful moms and I'm sure more than willing to have another mom to talk with regarding hospital/medical issues.
Sarah needs to teach you how to knit. Apparently, it's addictive and a great way to pass the time. Plus, you can actually wear or use whatever you knit. A two-fer…
once again, a friend of mine passed this on to me, she almost could swear i wrote it.
I too have a special needs kiddo.
i currently hate all her doctors (some days i dont) So i cant help ya out with biting off their heads, i hadnt figured out that one yet. But to relax, and destress, I find scrapbooking helps. I like to scrapbook the "before life went to hell in a hand basket" pictures. They remind me that life was normal once, and that some day it will be normal again, even if it has to be a new normal.
I have to laugh at your leg leaking issues. we went through something similar with my husband about a year ago. But his was through a surgical site on his leg from a vein graph.
it was quite fun actually, he could let it build up, and squirt it out to show people, the stream would hit the ceiling full force, it was great! One of his docs said "cool" first they said it will heal on its own, but after a few weeks it didnt
they refered him to vascular i believe, and they went in, opened up the surgical site a bit, and cauterized the leaking lymph node. this had to be done twice, but it did stop eventally.
in the mean time, to help soak up the leak, we used lots of gauze, and sealed the gauze in with tape, this kept his pants drier for the most part. the more he moved, the more it leaked. we also tried things like nursing pads, Depends, and even a tampon once. the tampon didnt work so well, but the pads did, im not so sure your going to get those near your 15 year old son tho….LOL
I dont know if this info will help you, i hope it does.
know that your not alone out there.
I completely know what it's like for a doctor to just say deal with it. My 5 year old son had active avian spinal tuberculous. We went to the doctor probably every week for the first 3 months of his life… and the ER. Everyone said he was fine just a cold…aka I'm nuts!.. Well he started screaming one night and you know the kind of screaming that babies make when they are completely flipped out. We went to the ER AGAIN and they finally found out that the right side lung wasn't working at all. 3 Months for someone to notice. Scared the beejesus out of me.