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geckoed 06-12-2006 06:44 PM

stressed, sick baby
 
DS is 16.5 months old and ALWAYS sick. Anyone else coping with this? I HATE antibiotics, yet our current record is 17 days without them. In his enitire life Loch has only gone 17 days without an antibiotic.
He grew ANOTHER weird bacteria this week (pseudomonas pneumonia, but its also culturing in his throat and stool). The Drs are, as usual, baffled. His labs warrant another two week hospital stay for IV antibiotics, but every time we hospitalize him he catches a hospital-grade infection while he's there. So we do IV abx in the office, and in shots, and he takes abx only available in tablets, as well as the pediatric oral doses. His chart has been reviewed by dozens of Drs and nobody has any answers. We run from crisis to crisis and its hard and scary and frustrating. He's got signs of sepsis again (will be a 4th round of sepsis if it IS sepsis again) he's got petechiae, purpura, 12 days of fever, etc. I mean, he's been WAY WAY WAY sicker- but its still scary.My older kids are such great kids. We'll say something like "well, I think we aren't going to make it to the library today" and they say, with nothing but concern, "is Lochie sick again?" They handle it really well- but it all adds up you know? The baby already knows how to open wide for a throat culture and has had way too many blood draws, IV's, spinal taps, etc. His "best friends" are the nurses and his favorite Drs- he smiles for them and waves to them and runs at them- things he won't do for most of the relatives- but of course he spends way more time with his nurses than with his grandmas etc. In the next week we have an appointment with Infectious Diseases (and that Dr has had a team review the case at Childrens to get ready for us), and we have a 3 hour block set aside for us with Immunology, and we see the Orthopedic surgeon for some measurements and hopefully some answers on his limb-length discrepancy.
My family is really not helpful in any of this, in fact they tend to do more harm than good (my son was born with a cystic hygroma/lymphangioma- a lump of lymph tissue in his neck. As soon as my mom saw him for the first time she said "I'd never bring a baby like that home from the hospital! I mean you can SEE there's something wrong with him, you know thats just the tip of the iceburg" so EVERY illness/issue since then has been fuel for her fire KWIM?). Filling out new patient forms on him is a nightmare- they leave about 2 lines for prior hospitalizations and after I check off 15 boxes I still have to write in another dozen things in the "other" slot. I REALLY want them to find the one "main" thing so we can work on that. There just has to be something connecting all his mysterious symptoms. Anyway, I'm just.... banging my head and wishing I had some answers and feeling bad for my jolly little boy as I get ready to stuff 4 medicines in him to get ready for bed... and feeling "alone" in all this I guess.

Prettylocks 06-12-2006 06:56 PM

Re: stressed, sick baby
 
Wow! That is a lot for a mama to deal with. :hugs:
Sending healing vibes your baby's way! :goodvibes:

SheilaJoy 06-12-2006 07:00 PM

Re: stressed, sick baby
 
Oh my gosh, how awful! I can't even imagine my baby having to go through all that! And for your mother to imply that you shouldn't have even brought him home. UGH :hugs:

Constant use of antibiotics does not seem to be helping, have you tried anything homeopathic? There are natural remedies out there for everything, and from what I've read they often work much better because they use the ingredients God has given us, rather than man. Mamalove is a great person to ask about this, I highly recommend you pm her if she doesn't see this thread and ask her about some things to try. :hugs: :hugs:

sesa70 06-12-2006 09:11 PM

Re: stressed, sick baby
 
First, big :hugs: I know this cant be easy for you and the rest of your family. I have a 'sick' kiddo too and it really is so draining. I understand where your coming from and I hope things get better for you and you get those answers you crave soon.

next:
Quote:

Originally Posted by geckoed
As soon as my mom saw him for the first time she said "I'd never bring a baby like that home from the hospital!

:ahh:

As opposed to what, leaving him there?! Seriously!

When my dd was just about 8 months old, we saw a developmental pediatrician. We were just beginning to put together the pieces of her diagnosis, and this woman was supposed to help fit everything together.
The first thing she told me was that I was young, and had my whole life ahead of me. She really pushed to have me put Celeste in a home, and tried to tell me I wouldnt be a bad mother if I did. She went so far as to tell me that i could even visit sometimes if I wanted to...but that Celeste would never know the difference! I was seriously outraged. She just didnt get it... of course my baby knew me! Of course she would do better and thrive in OUR home not a long term care facility. I didnt take her seriously for a second, but it just goes to show the mentality of some people.

Im sorry I am not much help, but I just wanted to let you know I know how your feeling and I hope things get better for you and ds soon.

ZooCrew10 06-12-2006 09:34 PM

Re: stressed, sick baby
 
Kim:hugs: Poor girl, I didn't know your little guy was so sick! I can't offer any solace through experience but I can understand the mother part...mine is a whack-job most of the time, so you have my sympathy there. I hope little Loch feels better soon. I would suggest trying the natural remedies as the other momma recommended, as I also hear they can at times work more effectively.

love2bmom2chris 06-12-2006 09:54 PM

Re: stressed, sick baby
 
Have they mentioned sending him to a specialist or something? If you've only been to one doc, I might get a second opinion (and possibly 3rd, 4th, 5th, etc...) I hope he gets better but they have to be missing something!

geckoed 06-13-2006 01:54 AM

Re: stressed, sick baby
 
he takes immunoraptors, multisaurus, rhino-vites with any viral illness, grapefruit-seed extract, garlic, chammomile for gas/illnesses causing fussiness, and the remedies in my hylands kids-kit depending on the symptoms. He sees a chiropractor. I really do believe the body is very good at healing itself and that antibiotics work against nature a lot of the time. My DD has been prescribed abx a few times, but we tell the Dr we'll wait a few days first and she never needs them. Loch is different though. At birth he had heart rate, breathing, and temperature stability issues so was in the NICU. He had no suck reflex, plagiocephaly, torticollis, and spiked a fever. He was transferred to another hospital and I was stuck in the first hospital (c/section). His antibiotics started there :( He came home a week old and unable to latch. We used a cup and a finger feeder and rigged the finger feeder as an SNS and taught him to nurse. He had formula only one time- in the NICU and he reacted badly to it so the nurses didn't try that again. At 7 weeks he had bronchiolitis with oxygen sats in the 80's and was hospitalized. At 3 months RSV. There were ear infections in there and his toenails grow funny so one got infected (they also peel off to the skin randomly). But at that time we were mostly dealing with the hygroma and torticollis and plagiocephaly and 20-40 seizures a day. We were driving 4 hours EACH way twice a week with all the kids in a van with no a/c and half the windows working to treat his head and neck. He was always sick. Then at 5 months my oldest had Strep throat and we didn't know it. One night the baby didn't really nurse for his 1am feeding, skipped the 5AM, and was still asleep at 8. He started moaning softly. He was sleepy and whiney. He just wasn't right. I took off the cranial band he wore for his plagiocephaly and he was SO hot. I had thought he was cold since his hands and feet were freezing. Trying to keep this short here- I ended up driving to the peds office and the ped was pulling up and I banged on his car window and made him look at Loch. Loch was asleep and looked- asleep. We went in and blah blah we had to rush to the hospital where a million bad things happened and they found out he had Group A Beta-hemolytic streptoccocal septecemia/bacteremia and meningitis. They cleared out a pediatric isolation rom because he was going to die. They like the kids to die alone- too hard on the roommates. So we went to die. They put him on a ton of IV abx and he was allergic so they gave him benadryl with the abx because even a severe allergic reaction is easier to treat than the form of meningitis he had. He was in septic shock and his organs were failing. He was semi-comatose for 8 days. But he was inconcievably alive. They brought a BUSLOAD of residents to see him. Every Dr brought their residents and Dr friends. We were like a medical tourist attraction. He was "the boy who lived". We asked "will he get it again?" and were told "we don't know- you don't live through it so we don't know" But he did live through it. Not only did he live but when he started to get better he got REALLY better, he tracked visually for the first time, batted at a toy for the first time, began to coo, lifted his head while on his belly, things he should have done months ago but hadn't. So that was the scariest episode. But not the last. He's had a variety of invasive bacterial infections. He's had strep throat 8 times even though "babies don't get that" 12 ear infections (including one which spread to the mastoid bone), sinus infections, sepsis a few times, a UTI caused by Klebsiella oxytocca which is a hospital grade infection, rotavirus (also picked up in the hospital), c-diff from the hospital, pseudomonas, and more. Meanwhile he's been diagnosed with limb-length discrepancy, has delayed visual maturity (has the sight of a 6 month old and 16 months plus one eye is near-sighted and one eye is far-sighted and one eye has loose muscles), hearing loss in one ear (and malformed ear canals), has a language delay (no mama/dada etc yet at 16 months), they think he has asthma, he's sensitive to dairy if not allergic, he's anemic, his lead levels weren't out of range, but they weren't 0 either, he has pica, and so on and so forth. He's seen the ped, the pediatric DO, the family Dr, a couple of neurologists, the physical therapist, the ENT, the pediatric surgeon, another sugeon (for the hygroma which is still there b/c its shrinking and not causing problems), the cardioligist (they suspected endocarditis or another heart infection and he was turning blue then) a million specialists will come to you while you are doing weeks in the hospital so we've seen a lot more while hospitalized with various infections. We have the big Infectious Diseases and the Immunology appts coming up. I just get so stressed. I want him to run through meadows with the dog, walk barefoot in the river, pick fresh fruit to eat, and not know his pediatricians name. Instead I have the peds home # and cell # in my WALLET and on my fridge. He's taken more drugs in his life than the rest of us combined. I hate letting them do the things they do, the tests and medicines and so on- but I have to keep him alive and he really gets all those rare stubborn infections that really DO need antibiotics KWIM? All the ones that will probably never happen to anyone you know, and he gets ALL of them not one.

As for my mom yeah, she meant it, she thought he should have been left at the hospital. About 6 months ago she sat me down to explain that I have other kids, kids who will "be someone someday" and that I NEED to let Lochlan go so I can raise them right. Gave me some crap about the good of the many outweighing the one and how I needed to put him up for adoption and move on.

sesa70 06-13-2006 08:29 AM

Re: stressed, sick baby
 
Kim, :grouphug:

I am so sorry things have been so rough for you and your little Loch. I can tell from your post how trying this is for you, as obviously it a very hard situation to be in.

I think, rather I hope, things will get better for you. I remember when my dd was going through the process of a bazillion docs to get a diagnosis, I kept saying I just WISH I knew what it was that was wrong. I, personally, was able to make peace with the problems she had once I knew what it was and had a name for her illnesses and lack of development. Sometimes that really helps.

Sometimes, too, it gets easier as they get older. I know that isnt much fun to hear, but you somehow become immune to the upheaval of it and just think of it as another illness, another hospital stay. Hopefully for your little guy, though, you wont have to get used to it and things will get better.

As for your mom, my personal opinion is that sibs who grow up in this kind of situation are better people in general. More caring, more compassionate, more understanding, more patient. It makes me sad to hear that your mom said those things to you, because obviously its not what you needed. To tell the truth I spent years where I hated my mom because of what she did/didnt do in regards to my daughter. She never really said hurtful things she just avoided us for about two years. Wouldnt see us, pick up the phone, etc. Pretended like we didnt exist. I eventually forgave her and we are great again now but I think its hard on grandmas in a different way. They have to see their grandchildren and their children suffer. Its no excuse, but still...

As for being 'the boy who lived' (like harry potter! LOL!) I can relate to that. Our drs told us essentially "take her home and love her but dont expect too much" Well almost 7 years later she is doing better than we could have hoped. Children have reserves of strength that are just incredible.
As for the residents, it got to the point where we had a hard rule that NO ONE other than the attending was to touch her, and no one other than the attending was allowed in the examning room without our permission. It helped all of our stress levels, especiall dd's.

I hope things get better for you guys, and that these new docs are able to shed some light on your Loch's health problems. I wish I could be of more help!

geckoed 06-13-2006 03:40 PM

Re: stressed, sick baby
 
Theresa, THANK YOU. The Infectious Disease Dr took his chart to Childrens and met with a group of Drs to brainstorm. So I'm really hoping he'll have some IDEAS at least. I'm sorry you had to struggle through Celeste's early months/years while you wondered what was wrong, can it be fixed? how? Its a special kind of heartache and it steals some of the joy and innocence of babyhood. I feel like I MISSED so much with Loch. I never put him down, I never left his side in the hospital (yes, you can homeschool 2 kids and play with a 3yr old all day in a hospital room- ask me how I know LOL) but I have spent so much energy on the very basics with him- keeping him breathing, teaching him to eat, keeping him alive there's not much left over for the milky-smiles and snuggly-joys. I mean they happen, just... less I think. I'm not explaining it well. But I think you might understand. Can I ask you to tell Celeste's story? She sounds like such a precious gift. (My oldest has autism, and after the grieving came such joy- he makes our lives better EVERY DAY)

sesa70 06-13-2006 04:08 PM

Re: stressed, sick baby
 
Kim, I would certainly be more than happy to share Celeste's story, but I dont want to hijack your post! I just wanted to make sure this was ok with your first :) And sadly, no, what she has cannot be fixed. I wish it could!

I do understand what you mean about not having as much time for the 'good' stuff. I think it was a bit different for us because Celeste was our first, so we really didnt know what we were missing until our baby dd joined our lives. It is bittersweet, because we love each and every milestone, no matter how small, but we also re-mourn for the milestones Celeste never had or never will have. We honestly didnt realize how much we were missing until we saw what 'normal' babies do.

You sound like an awsome dedicated mom. I think your doing everything perfectly and it sounds like, though difficult, you have made the best of (well as much as possible for right now) what your dealing with and that your trying to enjoy your baby boy for who he is. I think its the best any of us can do as moms. :hugs:


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