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anele_gw

One more request

anele_gw
12 years ago

I am in the hospital with my 4 month old, the one you helped me name. She had what seemed to be seizures (though atypical) from a fever this morning. She is doing well but we will be here until Monday night.

My request for good energies is not just for Paulina but all children who are sick or suffering somehow. We are lucky so far but I can't help think of those who are not, and my heart aches.

Comments (62)

  • User
    12 years ago
    last modified: 9 years ago

    Anele...positive thoughts coming from me also ! I am glad things are looking good now. Being an RN is hard work but it is a gift to be able to care for folks who cannot care for themselves. . I was not able to be a pediatric nurse due to the emotional load it required. I admire all who can do this. Please keep us posted as to you and little Paulina. c

  • User
    12 years ago
    last modified: 9 years ago

    Awe Anele, sending good thoughts your way to your family, especially Paulina. My husband used to work at Children's Hospital of Los Angeles and you are so right, a child that is ill is the most horrible of experiences for everyone involved.

  • cooperbailey
    12 years ago
    last modified: 9 years ago

    you are in my thoughts and prayers.

  • gsciencechick
    12 years ago
    last modified: 9 years ago

    I will be thinking of your little girl and your family.

  • IdaClaire
    12 years ago
    last modified: 9 years ago

    Praying for your sweet baby girl. Thankful that she's doing better today!

  • natal
    12 years ago
    last modified: 9 years ago

    Hope she's doing better and you're all home by now.

  • nancybee_2010
    12 years ago
    last modified: 9 years ago

    Thinking of you anele and paulina- I hope everything will be all right.

  • tinam61
    12 years ago
    last modified: 9 years ago

    I'm late to this thread, but will say a prayer for your little one Anele and you too. It is not easy on the parents either! We have friends who are on day 40+ at the Mayo clinic with their 14 year old son. It's never easy to see an ill child. Hope your little girl is feeling much better today!

    tina

  • amysrq
    12 years ago
    last modified: 9 years ago

    Prayers for you and your family. Be well, little Paulina. Be strong, Mom.

  • anele_gw
    Original Author
    12 years ago
    last modified: 9 years ago

    Thank you again. Knowing you were pulling for us helped so much. It was scary but ultimately fine. I was thinking it was not the best weekend but then I realized it WAS the best weekend. My baby is fine, she has no long-term illness, so what could be better than that?

    To Lukks's husband, thank you so much for your work in the medical field.

    Trailrunner, I can't begin to tell you how much I appreciate nurses. Truly.

    Tina, I will keep your friend's son in my thoughts and prayers!

  • tinam61
    12 years ago
    last modified: 9 years ago

    Thank you Anele. He is set for his second bone marrow transplant - hopefully by May 20. He has ALD, similar to ALS. He had a bone marrow transplant via umbilical cord donor. They will try a live donor this time and he will have to undergo chemo again - this time hopefully "killing" his immune system so that the transplant will take!

    I'm happy to hear your little one is doing well.

    tina

  • polly929
    12 years ago
    last modified: 9 years ago

    Oh Anele, how scary for you!

    Sending positive energies and prayers for Paulina. (I would have sooner, but I haven't been on GW much lately- just busy)

    I will also say a prayer for all the sick children out there. I include them every night in my prayers, since my home away from home is the hospital- where I dedicate myself to babies who arrive too soon or arrive ill. Working where I work there is not a day that goes by that I don't give thanks for my healthy full of life children.

  • amj0517
    12 years ago
    last modified: 9 years ago

    I've been off GW for a while; I'm glad she is fine!

  • anele_gw
    Original Author
    12 years ago
    last modified: 9 years ago

    Tina, I am putting my energies into the transplant working! I always try to donate my cord blood but sometimes have not had enough. What I don't get is why donation is not discussed more. I only heard about it through my sis. My doc and midwives never mentioned it, and I went to several practices.

    Polly, I was thinking about your work when we were in the hospital. Bless you for what you do.

    Yesterday I heard of a baby the same age as P. She passed away at the same time we were in the ER (different hospital) due to shaken baby syndrome at a daycare. Just awful. I don't know them, but am so sad for them. SBS is something that should be required info before leaving the hospital--they should make parents watch a video about it. This way they know not to do it and can learn of the risk in leaving their babies with others. It would not prevent it completely, but would be a start.

  • anele_gw
    Original Author
    12 years ago
    last modified: 9 years ago

    We had to go back to the ER on Tues because her fontanelle seemed sunken. Tests showed no dehydration so maybe it was due to spinal tap. Now a new worry. Fontanelle was back to normal yesterday, but today is puffy. Took her to the dr and they said if not down by Sun night we have to do a CT scan. I have felt frozen with worry all day. I can't believe it.

  • marlene_2007
    12 years ago
    last modified: 9 years ago

    Anele, I am very late to this thread. I am so sorry that Paulina is having such problems. There is nothing worse than a sick child.

    Paulina and your family are in my thoughts and prayers.

  • nancybee_2010
    12 years ago
    last modified: 9 years ago

    Anele, praying for you all- I hope so much that she won't have to have that CT scan. All the best to you.

  • anele_gw
    Original Author
    12 years ago
    last modified: 9 years ago

    We had to go back to the ER on Tues because her fontanelle seemed sunken. Tests showed no dehydration so maybe it was due to spinal tap. Now a new worry. Fontanelle was back to normal yesterday, but today is puffy. Took her to the dr and they said if not down by Sun night we have to do a CT scan. I have felt frozen with worry all day. I can't believe it.

  • anele_gw
    Original Author
    12 years ago
    last modified: 9 years ago

    Thank you, Marlene and Nancy. I can' t sleep. She is here beside me and I have to stop myself from checking her every few minutes. My husband just had me look at a rash my 10 yo developed. I had him call the dr-- one more thing to worry about. They think it is hives.

    Health and love to you all.

  • justgotabme
    12 years ago
    last modified: 9 years ago

    Anele, so happy to hear your little Pauline is well now. What a scare though.
    Tina I prayed for your friends son.

  • beachlily z9a
    12 years ago
    last modified: 9 years ago

    Tina, I can't believe a 14 yr old with a disease similar to ALS. Both my father and father in law had that disease. Stay strong and please keep us posted here. I'm praying for him.

    Anaele, thank heavens your little one is fine. Scary, I know!

    Take care, both of you!

  • anele_gw
    Original Author
    12 years ago
    last modified: 9 years ago

    Justgota and Beach, she still isn't fine, or we don't know for sure. Her swollen fontanelle looks only slightly better today. If not completely gone, she'll get a brain scan on Monday.

  • polly929
    12 years ago
    last modified: 9 years ago

    Anele, I'm so sorry to hear this.

    I will keep Paulina in my prayers, and feel free to email me if you need any help with medical interpretations. Doctors often forget that they are talking to parents who do not have medical degrees. It's a bulk of my job as a PA in the NICU- interpreting to parents what they just heard from my attending physician.

  • anele_gw
    Original Author
    12 years ago
    last modified: 9 years ago

    Polly, you are great. I will be emailing you when I get to my laptop. I think she is looking better and I have a theory about it, so would love to know if it makes any sense! Thank you!

  • justgotabme
    12 years ago
    last modified: 9 years ago

    Oh Anele, I'm so sorry, I don't know what happened, but when I posted the last post I saw of yours was the one you posted on April 23rd at 17:23 where you said your baby was fine.
    I hope your ten year olds rash is better too. Gosh when it rains it pours, huh?

  • polly929
    11 years ago
    last modified: 9 years ago

    Hey Anele,

    How is the baby doing? I haven't been on GW an awful lot lately, just busy, but I looked for an update, and haven't seen anything. I hope no news is good news.

    Polly

  • anele_gw
    Original Author
    11 years ago
    last modified: 9 years ago

    Thank you, Polly. Things are not good. For the rest of my life I will regret my decision to delay her vaccinations. I was so worried about possible seizures that I did not get her DTaP on time and now she has pertussis. Truly the most horrible thing. It is a nightmare and only I am to blame. I pray constantly that she will survive this. I think it is getting better only to get worse. I am so scared of how much worse it will get.

  • golddust
    11 years ago
    last modified: 9 years ago

    Angeles, I hardly pray but I am praying for you and that precious baby. Keep us posted.

  • theroselvr
    11 years ago
    last modified: 9 years ago

    Anele; I'm sorry; I didn't see this when you posted.
    Don't blame yourself; it's so hard to know what vaccines to give & when. Both of my kids were not on time; back then; I did not have the co-pay. You do the best you can.

    I would love to see a vaccine chart from 1985 & compare it with now because I swear that they wanted more vaccines with my daughter that was born in 93 then my son in 85.

    I can't imagine that putting vaccines in a baby's body is healthy. Here we're trying to figure out allergies; they're worried about starting foods slow; yet they want to inject toxic stuff into our little ones?

    I don't know what to think about vaccines. I wish I wrote more down because I remember being up with my daughter; she had to be between 4 to 7-8 months. I know it was a Thursday night because my ex was not home; he worked a double. She was crying & crying; nothing would calm her down. I remember her breath being really bad. At some point I was going to take her to the ER but she finally calmed down. I always wonder what was wrong that day & kick myself for not taking her in. I'm almost positive it was after a vaccine; I think that was why I didn't immediately run her in.

    They can say whatever they want about autism/vaccines; but when you know kids that were fine; healthy toddlers before; there is reason to question.

  • marlene_2007
    11 years ago
    last modified: 9 years ago

    Anele, I am so sorry and please know that you and your little one are in my thoughts and prayers.

  • User
    11 years ago
    last modified: 9 years ago

    Anele, As the parent we always feel responsible when something goes wrong with our children, but I wish you wouldn't blame yourself. Holding off on a vaccination because of other complications isn't an unreasonable conclusion to come to. Like Roselvr says, those little bodies can only handle so much. Anyone who knows you knows your adore your children and you obviously made the decision with your heart in the right place. Vaccinations usually take some time to build up the immunities anyways, so she may have contracted this regardless. The important thing is to focus on her recovery and not let the burden of guilt play any part in that. It will wear you down and tear you up when you need your energy to care for your baby and family.

    As you can see you are not alone, we are all praying for you and your girl and are here if you need support. Please keep us posted on her recovery.

  • tinam61
    11 years ago
    last modified: 9 years ago

    Anele - I just looked back at this thread. I am so sorry to hear your baby is still sick and has developed pertusis. I am keeping her in my prayers and you also. Please don't beat yourself up over your decision.

    Keep us posted!

    tina

  • nancybee_2010
    11 years ago
    last modified: 9 years ago

    anele, my heart goes out to you and your baby girl, I am hoping and praying for you.

  • cooperbailey
    11 years ago
    last modified: 9 years ago

    I also just checked back in. My thoughts and prayers are with you and your little girl.

  • OllieJane
    11 years ago
    last modified: 9 years ago

    anele, I did not see this post and I can't imaagine you going through this, this long, must be heartbreaking. I will be praying for Paulina constantly. I will go light a candle for her today. So sorry you are going through this.

  • theroselvr
    11 years ago
    last modified: 9 years ago

    I agree with Lukki; even if you did get the vaccine in time; it's possible she could have been infected before it kicked in.

    Healing thoughts for your little girl

  • judiegal6
    11 years ago
    last modified: 9 years ago

    I'm just seeing your post about baby Paulina for the first time. I hope she's recovering well. I sure can relate with those motherly guilt feelings. You sound like a wonderful mother and person. Please keep us updated!

  • roarah
    11 years ago
    last modified: 9 years ago

    OOH Anele, I only just read this thread. I am thinking of you and your family and am hoping your sweet infant is home and well as soon as possible. Please do not blame yourself! There is very little info about what does happen without vaccines and so much "what if" about what some believe vaccines can do. For other moms who consider delaying due to possible autism risks, the English doctor who published the initial report lost his license and faced criminal charges in England for false data and a faked control group. the findings were never meant to be published and the English medical journal retracted the article with in days of its orginal publication but it was to late to stop the scare that followed. Autism by its nature is not usually detected until a child reaches a social age, which is often 18months, it is coincidental that the MMRs is also at at that age.
    All this being said, Anele, my peds office will not give a vaccine to any ill child, they have advised me to wait when my daughter had a fever and also due to her allergies. You did the common sense thing to wait till Pauline felt better, how were you to know that she would catch something that had, until recently, been almost unheard of. This is not your fault! It is just horrible luck.
    Be strong and possitive and all my positive thoughts will be directed to your little sweetheart. May she be well soon!

  • polly929
    11 years ago
    last modified: 9 years ago

    Oh NO!! I have thought about you and Paulina a lot over the last few days, I am so upset, literally have tears in my eyes to hear this. I don't even know you personally, but yet I feel like we are friends. I am so sorry, and I will pray as hard as I can that she recovers from the pertussis.
    Please do not blame yourself, I would have done the same thing. She is only 4 months old, had you only had the first 2 vaccines she still would not have been completely immune and still would have been at risk for catching it.

    It truly is an awful illness, I pray Paulina makes a full recovery. Please keep me posted. And again if you need any help with medical interpretations please feel free to email me privately. I'm so sorry you are going through this.

  • User
    11 years ago
    last modified: 9 years ago

    Prayers for you, your child, and your family.

  • mitchdesj
    11 years ago
    last modified: 9 years ago

    we're thinking of you and hoping Miss P gets better real soon.

  • anele_gw
    Original Author
    11 years ago
    last modified: 9 years ago

    Thank you all so very, very much.

    I so much appreciate the prayer chain you started, Polly, and feel the same way about you-- that we are friends even without having met.

    In hindsight (I can say this now) we got off very easy, relatively speaking, and she is doing so much better. She started Friday of Memorial Day weekend with a fever. I took her in because of her problem with a fever last time. The fever was gone by Sunday, but by Monday she developed a noticeable cough. I took her to the doctor the next day, and the doctor said it was a virus that attacked the trachea. By Wed. she was coughing every 5 minutes. I started her on a steroid but in the middle of the night I was extremely worried it was pertussis. Every symptom checked out, much as I tried to talk myself out of it. I requested she be tested for it the next day. It was then that I found out even my vaccinated children could pass it onto her.

    Each day the interval was longer, but then more severe spells set in. I knew that it could potentially get worse . . .much worse. This bacteria tries to kill people, in some respects . . .creating mucous and killing the cilia that would bring it up, and stimulating the gag reflex that makes eating and taking medicine harder.

    By Saturday her coughing was so bad (but she had not turned blue) that I took her to the ER. The doctor dismissed it, saying she had a virus. Sunday morning we got confirmation that it was pertussis. We started her on abx.

    It was scary, being home alone with her and the other kids, not knowing if she was going to need ER services as she would choke/gag/vomit when she coughed. I had offers for help but even though we are all on antibiotics I did not want to expose anyone else since it can be transmitted. This is why the vaccine is not a sure thing-- sadly, parents/children can pass it and it is not 100% effective. My friend and her children are fully vaccinated and they have it as well (got it at the same time). They are still coughing non-stop while Paulina is remarkably better.

    We got the OK to give her Benadryl, which made a difference in addition to all of the wonderful prayers and positive energies from you. I am almost in disbelief and hope that this change for the better will continue on.

    Roarah, yes, the link between vaccines and autism is unproven. I do, however, know children IRL who are vaccine damaged. It does happen, tragically. My reason for waiting was not due to this, however, but because Paulina had some health issues that took a little time to figure out, inc. febrile seizures. (Children who have seizure disorders sometimes do not take live vaccines per the dr recommendation.) Even in places like Australia where the population is 95% vaccinated, bad pertussis outbreaks occur. It is very tricky.

    Thank you again so much. This has been a nightmare and you have helped me get through it. Her improvement is a testament to the strength that good energies and prayers bring. I cannot thank you enough.

  • Boopadaboo
    11 years ago
    last modified: 9 years ago

    Positive healing thoughts for you and your baby Anele.

    It is sooo difficult to know what to do about vaccines. I was up all night reading about them last night myself. the DtaP Vaccine has a lot of negative press, and regardless of the study on any particular vaccine, I believe what I have read and that there have been no studies on all the vaccines given together. I just don't know what to do and have to decide by next week what vaccines to give my 2 month old at his next wellness visit. I did the Dr sears delayed schedule with my 3 yr old. I worry about the DTaP though for my second and all you read about the negative effects parents have seen. I think there could be far more issues out there related to vaccines then autism alone.

    Sorry for rambling. I am so glad to hear your baby girl is doing better and I hope you don't beat yourself up anymore over this although I know it is easier said then done. If you had gotten the shot, you could have other serious long term health issues to deal with. You just never know. :(

    Here is a link that might be useful: Number of vaccines by country

  • anele_gw
    Original Author
    11 years ago
    last modified: 9 years ago

    boopadaboo, I am usually a researcher to the extreme. I have no idea why I was so casual about this-- I was simply going to delay everything by one "set." Other than #3, children 1, 2, and 4 were vaxed on time. (I waited with #3 but NOT for the early shots-- just the ones as she got closer to 2.)

    It started off with my MW advising not to get the HepB in the hospital, so I did that at 2 months, and was going to start DTap at 4 months, but then DD was hospitalized and I wanted to wait a few more weeks. She also had croup early on-- and then we didn't know what it was, so I wanted her to be 100% healthy.

    I had no idea pertussis was SO common and that people who are vaccinated can be the carriers. I did not know that the effectiveness wanes quickly. I learned all of this too late . . .when I suspected DD had pertussis. The thing is, if your 2 month old gets it, there is NOTHING they can do. Your child will be hospitalized and be in an oxygen tent when the spams start. He will be fighting for his life. My friend knows a child who got it at 2 mos and now has mild CP due to lack of oxygen. My MIL counsels a woman whose baby died from it at 8 weeks. As Polly said, it's a good idea for all adults around your baby to get the booster, too-- even though it is not a guarantee, it does reduce risk.

    Vaccines are risky, but so is driving. You have to make your own choices, obviously, but listening to your baby gasp for air and wondering if you will have to do CPR/call 911 during a spasm is a horrible feeling. I know how scary the thought of vaccine injury is, however . . .I know a few children who have definitely had this (fact, not speculation) and it is terrible, too.

    I wish there were more certainty in the world for sure. All the best with your decision and thank you so much for your support.

    Today is a good day for my daughter because her coughing is more predictable (seems triggered by gag reflex usually only now) and she's only thrown up twice. We are LUCKY. She is laughing at me from her blanket right now . . .and I am feeling extremely thankful. (And still very foolish.)

  • kellyeng
    11 years ago
    last modified: 9 years ago

    Oh Anele, I can't even imagine how frightening this is for you. I wish your darling little girl and family lots of rest and recovery.

  • OllieJane
    11 years ago
    last modified: 9 years ago

    anele, you are a beautiful mom, I can just tell by your loving spirit, and I pray for your family and beautiful daughters to continue with good health. Bless you and your beautiful family.

  • theroselvr
    11 years ago
    last modified: 9 years ago

    I want to add that the links added were very good reading! I thank you so much. I knew that the number of vaccines had gone up a lot but didn't realize it was that much! Scary to think that some were vaccinated & the vaccine may be bad.

    The kids I know were on time with everything; some even early but some totally shut down at the same age. I believe there are different types; some genetic where others I feel we can't say one way or the other if it's vaccine injury. I don't know if I will live long enough to ever see a real study where they make all of us parents fill something out. I actually believe both of my kids have mild forms of aspergers; my daughter born 93; having it worst. It's very noticeable now that she's almost 19.

  • kiki_thinking
    11 years ago
    last modified: 9 years ago

    Late to the thread, but prayers for a well baby!

  • User
    11 years ago
    last modified: 9 years ago

    I'm so glad to hear your baby girl is doing much better! I can't imagine how scary that would've been. Praying she will continue to recover to 100%.

  • theroselvr
    11 years ago
    last modified: 9 years ago

    I'm so glad she's doing better!

    Does it seem like posts/links are missing? Could have sworn there were links to a few stories. I came back last night to grab them for my chiropractor. Thankfully I'd saved them elsewhere.