I almost lost him...

By Leca
@lecanis (16661)
Murfreesboro, Tennessee
September 6, 2007 11:08pm CST
On Tuesday night my 15-month-old son Dustin had a seizure... some of you might know he had a few before and we had some tests done, but they thought they were just febrile seizures he would grow out of and nothing to worry about. Well, on Tuesday night he had a tiny one that last just a few seconds, and then we noticed he had a fever so we gave him Tylenol and put him in a cool bath to cool him down... all the things we were supposed to do. Only then he started having another seizure, so we started timing it, called 911 when the doctor had told us too, all that stuff. He was still having it when the ambulance got here, still having it while they worked on him in the ambulance, still having it at the emergency room while they worked on him there. The doctor had to pump so much medication into him to stop the seizure that he stopped breathing. I have never been so terrified in my life, and that's saying something, considering the life I've led. For almost two hours a respiratory therapist stood there pumping air into my son's lungs, while he wasn't breathing on his own at all. I felt like I wasn't breathing either. They kept letting us in the emergency room and then taking us back out. The first time the nurse made me leave she said "We don't want you to have nightmares"... which might have made some people feel cared about and better, but it only made me think "What are they doing to my child that would give me nightmares?" and got my imagination going. (That was when they were putting tubes in him for breathing, I found out later.) That was a horrible time for the doctors because they couldn't seem to get the right size tube, and his lungs and airways were already all swollen and it took forever to intubate him. Anyway, he started breathing on his own after a few hours, though they left the tube in just in case they had to breathe for him again later. They wanted to send him to Milwaukee to the children's hospital there, but because of weather there was no getting a plane or chopper to do so. The staff at the hospital here wasn't really comfortable having a baby in that condition at all, usually they send them out. When we finally left the emergency room for the intensive care unit, it was like 5 hours later. In the ICU, Dusty had his own nurse who sat with us all night. That was really good, because every time his numbers dropped she was right there to help him and call the respiratory team and everything. Wednesday morning his pediatrician told us if he didn't wake up soon she still wanted to send him to Milwaukee, and my husband and I were both just staring at him and each praying to our own God(s), and trying to think of some way to get him to wake up. Tickling finally did it, and he even opened his eyes and giggled at us for a moment. After that he was back out for a long time (because of the seizure meds) and then when they finally took the tubes out of him his throat was so sore and raw and he woke up really upset and keep doing this poor pathetic little scream. Poor baby, I felt so horrible for him. He was stabilized Wednesday afternoon and we wound up taking him home just because he would be more comfortable there, and he's been eating enough and acting more like himself now, though the seizure medication they have him on is knocking him out. We go to see his pediatrician again tomorrow, and then after that we have to figure out where he's going to see a pediatric neurologist (somewhere in Wisconsin likely, but we're not sure which place yet). Obviously there's something more than just febrile seizures going on with the severity of this one, say the doctors. I don't really know how to make this a discussion, but I wanted to share because I know my friends would want to hear, and because I felt like writing it all out would help me some. I was so calm while it was going on, outwardly, even though I was freaking out inside. I was talking to the UU minister on the phone today and she kept telling me how well I did and I realized she was right... my husband and I both managed to keep it together better than I would have expected. If someone else had told me this story about their child, I would have said "I would have been going nuts" but honestly I was just trying to be there for Dustin and do anything I could and be strong for him. Has anyone else been through an emergency with their child and reacted differently than they thought they would?
15 people like this
27 responses
@babykay (2133)
• Ireland
8 Sep 07
Wow I did not know your son is around the same age as mine. Thank God he came through it. Sorry also that I have no advice to give and neither do I have a story anything like yours. All I can say is that it seems to be very common for babies to have seizures and that they can and do grow out of them with no ill effects. The other thing is that kids are very resilient compared with us adults. They bounce back a hell of a lot quicker. That doesn't help much I know. Can I just say as well that you sound like you are coping really well. I will say a prayer for you when I go to bed. x
2 people like this
@lecanis (16661)
• Murfreesboro, Tennessee
8 Sep 07
Thanks for your prayers. =) It is pretty common for babies to have seizures, and we weren't really as worried with the first few, but this one was just not normal, with how long it lasted and how much medicine it took to stop it. Still, we're hoping that it's something he will grow out of and won't have to deal with his whole life. For right now we're just taking it one step at a time and trying to get him the care he needs to get to the bottom of it. And giving him lots of love, of course. Having a baby that age is so much fun, though, isn't it, most of the time? I know I enjoy watching my son learn new things everyday... it's so amazing. You're right about them being so resilient too, he's already bouncing back well, as far as we can see!
1 person likes this
@1grnthmb (2063)
• United States
7 Sep 07
I am so sorry to here about what is happening to Dustin. I hope the Doctors can find something to help him soon. You did really good and stayed cool head during the time when he needed you the most. Most people would have just paniced and would have been worthless. it is good that you can write about this. It helps to tell others what you are going through.
2 people like this
@lecanis (16661)
• Murfreesboro, Tennessee
8 Sep 07
Thanks for your kind words. It really does help to write about it. I feel a lot better now that I've gotten it off my chest. =)
1 person likes this
@wachit14 (3599)
• United States
7 Sep 07
My heart goes out to anyone who is caring for a sick child. There is nothing more frightening than being at a loss for how to make things better, when there's really nothing you can do. I will pray for you that you find a physician who can help you discover the underlying cause for the seizures.
@lecanis (16661)
• Murfreesboro, Tennessee
8 Sep 07
You're right, there is just nothing more frightening than this feeling of helplessness when faced with the illness of someone I love so much. Thank you for your prayers. We're hoping to find the right doctor soon to help us with the situation.
1 person likes this
@Thoroughrob (11748)
• United States
7 Sep 07
I am sorry you had to deal with something so terrible. You did seem to keep your wits. I do until it is all over and then I fall apart. My daughter was 15 and went to the bowling alley, I get a phone call from the police department telling me that I need to meet her at the emergency room. They only told me she fell and hit her head, they told me it was not a big emergency, but I needed to meet her, as she needed checked out. I get there only to find out that she is being lifeflighted to a bigger hospital and they don't know if she will even make it. Not and emergency?? When I get to the other hospital, they are telling me she will make it, but has head trauma and they don't know how much damage was done. They told me she may not be able to walk or talk. This was devastating, I am already taking care of my son, who is disabled and can't walk or talk. I managed to keep it together and worked with her for a few weeks while she was in rehab. Thank goodness she was ok except for a few minor problems. I held it all together until she was home and better and then I sat down and realized what had happened and what could have been and lost it. It is amazing, the strength you have, when you need it. I hope that they get him more under control and you can avoid anymore close calls. God bless!!
2 people like this
@lecanis (16661)
• Murfreesboro, Tennessee
7 Sep 07
Thank you for sharing your story with us! That is very scary, when you were told it wasn't a big emergency and then it turned out to be, how terrifying! I'm glad to hear that your daughter did better than expected! I'm still waiting for the right time to lose it myself, sort of. I still have to watch him carefully at the moment, so I haven't really given myself time to fall apart yet. I'm sure it's coming soon. Thanks for all your kind words! Hopefully we'll have things under control soon.
1 person likes this
@sigma77 (5385)
• United States
7 Sep 07
I am happy you and your family are doing better. You can only do at the time what you can do. No matter what, you have to believe you are doing your best. I went through similar things over 20 years ago when my step daughter had lukemia. Sometimes, things are just out of your control and a higher power is in charge. That might be true for most things, I suppose. I will pray for your son to be healed.
2 people like this
@lecanis (16661)
• Murfreesboro, Tennessee
7 Sep 07
Oh, that does sound horrible to have to go through, your step daughter having leukemia. I like what you said about having to believe that you are doing your best. It is hard to accept sometimes that there is only so much you can do, and the rest is up to someone else. Thank you for your prayers.
1 person likes this
@sunshinecup (7880)
7 Sep 07
I don't know what to say, my mouth is just dropped open reading this. OMG, bless all of you. I am praying for you and will continue to do so. I am so sorry this is going on for you guys. You are doing good Mom and I am glad you let us know what you all are going through. I can't do anything else but pray for you guys and I hope in some way it helps to know you have so many thinking of you all during this horrible time. Please keep us updated as to how he is doing.
2 people like this
@lecanis (16661)
• Murfreesboro, Tennessee
7 Sep 07
Yeah the whole thing was really scary and miserable. Thankfully he's doing better at the moment, but I'm just watching him so closely fearing it will happen again. I didn't even sleep last night at all hardly because I couldn't stop checking on him. Thanks for your prayers, sunshinecup. =)
1 person likes this
@aissha (2036)
• India
7 Sep 07
i remeber dusty hving ,i think in june ,and u updated us ,but this was really terrible ,i'm really happy all of u came out of it ,i'll pray for him ,give the sonny bonny boy my love .
2 people like this
@lecanis (16661)
• Murfreesboro, Tennessee
7 Sep 07
*nods* Yeah, when he had them before we had tests done then and they gave us the all clear, thinking it was just because of fever. Hopefully this time when we see a pediatric neurologist they'll be able to investigate further. Thanks for your kind words, and your prayers.
1 person likes this
@lyndee22 (1210)
• Philippines
7 Sep 07
I am sorry to hear that and it's one way of releasing tensions by sharing it to friends who understands or knowledgeable to this kind of situation. It's a heart breaking experience to a mother and to a very young child. You're very strong and I pray for Dustin's full recovery and good health. As I read your story, I remember our office mate who had seizure in the office. In the first place we don't know what to do, we're terrified but presence of mind really helps. We brought her to the nearest hospital and she was treated immediately. The seizure came frequently. She had undergone many tests, examinations and laboratories and the doctor couldn't find the cause of her illness untill a neurologists examined her and diagnosed a brain rheumatism. Now she's very healthy and the seizure did not occur again.
2 people like this
@lecanis (16661)
• Murfreesboro, Tennessee
7 Sep 07
Thanks for your prayers. Thanks for sharing the story about your office mate... it's great to hear that she didn't have any further seizures. I'm hoping that once we find out what's going on with Dustin we'll be able to get him treatment that will prevent further seizures as well.
1 person likes this
@kclaret59 (587)
• Philippines
7 Sep 07
thank goodness everything is all right.. and that was really a great job you did there. it really is not easy seeing your child suffer for something nobody has caused.. and anyway, i think you should bring him to a neurologist because i think there must be something wrong with him.. and the sooner, the better since some ailments are cured if treated earlier..
2 people like this
@lecanis (16661)
• Murfreesboro, Tennessee
7 Sep 07
*nods* We are making plans right now to get him to a pediatric neurologist. It's just a matter of their not being one in our town, so we have to plan it as a trip. Still, before that our pediatrician is going to do some tests here as well, so that we'll have as much information as possible.
1 person likes this
@agnescav (566)
• United States
7 Sep 07
That must have been terrifying, especially after you were told it was something relatively benign. I can't imagine living somewhere where you would have to take a child to emergency care by helicopter. When my granddaughter was born, she had trouble breathing, but I live in Philadelphia and there are two huge reputable children's hospitals here. That is one of the few good things about living in big cities, I guess. I hope your gods stay with you!
2 people like this
@lecanis (16661)
• Murfreesboro, Tennessee
7 Sep 07
*nods* That's the downside to living in a remote area. I'm in the Upper Peninsula of Michigan, so the health care here is kind of iffy sometimes. We did have very good doctors and an excellent respiratory therapy team, but it's just a matter of not having the proper equipment or specialists to deal with certain things. Thankfully our son wound up doing okay even though he couldn't get to the bigger hospital, but we're still going to have to take him later to see the specialist. I'm glad that your granddaughter was able to get the care she needed easily! Thanks for your kind words. =)
@theprogamer (10539)
• United States
7 Sep 07
You don't have to apologize if the discussion isn't coming natural Lecan its understandable. Please share these things, its your hour of need and we wanna be here for you. Make sure to keep a good eye on your child and be that pillar of strength for him, he'll need it. The story really sent my heart into a tizzy for a bit but its expected. For now keep him comfortable and try to keep the best hopes in the forefront. I do hope this comes out for the best, I don't want you to lose someone so precious just like that. You shouldn't have to go through that and I sincerely hope you don't. Think of the things you need to see your son do. First day of school, skinned knees, teenage milestones, and lots more. Sorry if i'm not 120% in this post I took a cough suppressant/tranq and I think it shows on some of todays posts (except that one about the domestic strike ;p). Anyways, I'm here and many other myloters will come to your aid, to listen to your plight and offer their sympathies and hopes. With that, I'm gonna ring the KO bell and go to sleep Have a good night, and be sure to hold the baby extra close this night. - Pro.
2 people like this
@lecanis (16661)
• Murfreesboro, Tennessee
7 Sep 07
Thank you for all your kind words. It is amazing to think about all the things that we still have before us... I am always wondering what he will be like when he is older, as well as enjoying how he is now. He's such a lively little boy, always into trouble and investigating everything... I had almost forgotten how young and vulnerable he was until I saw him in that condition. I am hoping that we get to the bottom of what's causing this soon, and that his medicine keeps him from having any more seizures in the meantime. I've been holding him every moment that I can since we got home, I just don't want to let go of the little guy, but he needs his rest right now. I'm actually looking forward to getting him up to give him his medicine so I can hold him for a while though. You take care of yourself too! Good night.
2 people like this
• Canada
7 Sep 07
Teddy Bear For Dustin - A teddy bear
I am so sorry hun to hear about your son. It is amazing though how you can say one thing when your not in that situation, but do another when you are actually in it. I am so glad you and your husband managed to keep yourself together as children aren't stupid and can pick up on and sense things. I hope your son is feeling better and I hope you get some answers soon hun. My heart and thoughts are with you! I have enclosed a teddy bear for him, and I send my hugzz as well!
1 person likes this
@lecanis (16661)
• Murfreesboro, Tennessee
7 Sep 07
Thank you so much! You are so sweet! It is amazing how differently we act than we think we would. I didn't realize it at the time, just after someone else mentioned how well I had done did I realize that I was so much stronger than I would have thought. You have a good point about children picking up on such things too... I think our calmness helped him a lot, and is still helping him while he's recovering. I hope we get some answers soon too! Thanks for all your thoughts and hugzz and just being you.
2 people like this
• Canada
7 Sep 07
I'm sure your calmness has helped your sons recovery, probably more then you'll ever know. I just about cried when I read what happened, my heart really goes out to you and your family. Stay strong, and my heart and thoughts are with you and your family sweetie!
2 people like this
@lecanis (16661)
• Murfreesboro, Tennessee
7 Sep 07
Thank you so much. I'm trying to stay strong! I know that sometime soon when my husband is home to watch the baby and I have time I'm going to have myself a nice little cry (preferably in the bathtub) but I'm holding off until I have the time. =P
2 people like this
• United States
8 Sep 07
Oh my Goddess - I just finished reading your account of what happened to your son and your family...that is just terrible! I know what it is like to watch a family member almost die, but I've never been in the situation of watching a child get that ill, let alone, stop breathing for hours. That is so scary, and I feel so much for you! I hope you're taking care of yourself, and especially your baby. He is too young to be going through such an ordeal and so are you - though they say that "god wouldn't send us anything we couldn't handle" or that "everything happens for a reason." I sure hope that there is a good explanation for this and the Doctor's and specialists figure out what is going on with your son before it gets worse! I'm keeping your son in my thoughts and prayers. I sure hope that he is doing alright and that you are doing better. You're a strong woman!
1 person likes this
@lecanis (16661)
• Murfreesboro, Tennessee
8 Sep 07
Thank you so much! You're right, it was very scary, and so sad for such a little boy to have to go through that. What a tough little guy he is too, he's bouncing back so well! You can believe I'm taking good care of him though... almost too much, he's sick of me paying too much attention to him I think. Independant little boy that he is. I do hope they get everything figured out soon, because it is hard to keep going knowing it could happen again anytime. His pediatrician is really good though, and hopefully she'll find him a good specialist. =)
1 person likes this
• United States
8 Sep 07
I'm glad to hear that your son is feeling better, especially emotionally! I really hope that they find out what is wrong with him very soon, and provide the right type of treatments as well! If you ever need somebody to vent to, I'm here, anytime! I know you hardly know me, and I'm not a mother, but I am an Aunt, and I do know what it is like to have responsibilties, especially parenting responsibilities. And being dis/Abled myself, I know what it is like to have to deal with medical issues, Doctors, etc. Take good care of yourself, your family, and especially, your son. I hope that he gets better very, very soon! PEACE and HUGS!
1 person likes this
@lecanis (16661)
• Murfreesboro, Tennessee
8 Sep 07
You know, being willing to listen and being kind is sometimes more important than anything. Thank you for your offer. =)
@gabs8513 (48708)
• United Kingdom
9 Sep 07
Sweetie do not worry about turning this into a discussion All I can say is I am so glad that your Baby got through this and that you got through it to I know how scary it is I will never forget when my Son was 3 months old and turned very sick and the days me and him where in Hospital (Ex husband could not handle it so he said he preferred to drown his sorrow)my Son is now 23 and they never found out what caused it So Sweetie I admire you how well you got through it and your Baby is very strong it is amazing how calm we stay during the Incident but when it is over the panic and thinking starts I know it was the same with me but he is there and he got through it and I really hope for you that you never have to go through this again Big Hugs to all 3 of you
1 person likes this
@lecanis (16661)
• Murfreesboro, Tennessee
11 Sep 07
Thanks gabs. I'm so lucky that my husband was able to be right there with me, he is such an awesome father! I can imagine it would have been so much harder having to deal with this situation without him, and I commend you for getting through on your own when your son was ill. Thanks for all your kind words and for keeping us in your thoughts. =)
1 person likes this
@gabs8513 (48708)
• United Kingdom
11 Sep 07
Sweetie you are welcome I am just glad that he is ok now and that you both stuck together and got through it
1 person likes this
@Modestah (11188)
• United States
10 Sep 07
oh, dear... reading your post brings back my own anxieties and fears as my little boy at 13 months had his first bout of seizures, he would have them again at 18 months and again at around 3 years... looking back through his records it becomes painfully obvious that the seizures coincided with his immunizations. sigh. one time the er doc wanted to take a spinal tap on the poor baby, speaking of spinal meningitis and such... they poked into his little back so many times I counted 18 little pinpricks. they were not successful. .. they would not let me go to him it was pure agony being in the waiting room hearing his wails. finally they called in his pediatrician who gave that doc and his staff heck for their stupidity and cruel treatment of the baby. Stating that his neck was not the least bit rigid which totally rules out spinal meningitis.
1 person likes this
@lecanis (16661)
• Murfreesboro, Tennessee
11 Sep 07
Oh that's so scary! I would have been very upset as well, how incompetant of those doctors, and the pain your poor baby went through! You're not the first person who mentioned immunizations. I know my son's first seizure happened right after having some, but none of the seizures since then have coincided. In fact, he hasn't had any more immunizations since that first seizure yet that I can remember... I guess his next ones would be about 18 months I think. Still, I'll have to keep it in mind and look into it.
• United States
8 Sep 07
Oh yes, writing always helps. So sorry to hear this happened and I will keep him in my prayers. I don't have children, but to sit back and imagine such a thing is horrifying. You are very strong in this. ((((HUGS))))
@lecanis (16661)
• Murfreesboro, Tennessee
8 Sep 07
*nods* Writing is very good for me, when it comes to things like this. It makes me see the situation so much more clearly, and feel better about it. It was a very scary experience, and I really hope it's one we don't have to repeat! *hugs*
@LadyDulce (830)
• United States
8 Sep 07
Oh my god, you poor thing. You must be exhausted after all of that! I remember my youngest brother would stop breathing during his first few years. He had so many surgeries and ER visits, they knew us all by name. My poor mom lost so much weight during that time; I know how stressful it is on a family. My own son only stopped breathing once, about two weeks after he was born, so I had the hospital on speed-dial at that point anyway. You have my best thoughts Blessed Be
1 person likes this
@lecanis (16661)
• Murfreesboro, Tennessee
8 Sep 07
I hope that your youngest brother's health improved later on! That must have been so hard on you and your parents! My son's health was really good up until a few months ago, I can't imagine having something so scary happen with a two-week-old! At that time I was still worried I was going to break him if I held him wrong (him being my first baby and me having no real baby experience before that)! Thanks for all your kind words, and keeping us in your thoughts.
• United States
7 Sep 07
Lecanis, I read this entry early this morning, you and your family has been on my mind all day long. It is almost impossible to offer words of comfort in this situation, so rather then try and console I just want to tell you that my thoughts and energy go out to you. Your loved and thought about. Now we just wait to see what his doctors come up with. I am also proud of you, I have never had something like that happen to one of my children so I just don't know who I would react, and to be honest I don't want to have to find out. You are a very good mother of this one can be certain.
1 person likes this
@lecanis (16661)
• Murfreesboro, Tennessee
7 Sep 07
*nods* It is hard to know what to say... I would have felt that way if someone else told me this too. It's just so scary, especially with a child so young, there are just so many things that can do go wrong it seems! Thank you for all your kind words, and for keeping us in your thoughts.
1 person likes this
@Feona1962 (7527)
• United States
7 Sep 07
I am so sad to hear of your son's seizure, and am glad that he is home now. Thank you for letting us know so we can pray for Dustin and you and your husband..Take Care.
1 person likes this
@lecanis (16661)
• Murfreesboro, Tennessee
7 Sep 07
Thanks, Feona! I really appreciate you keeping us in your thoughts and prayers.
• United States
7 Sep 07
Oh sweety, that is horrible and frightening. I sure hope they find the cause and treat it before this ever happens again. I know what you mean by holding it together. I do the same thing when something really bad happens. It's like my brain goes into emergency mode and I can stay calm and think clearly and do exactly what needs to be done. Later, when everything is resolved, that's when I fall apart! You and your family are in my thoughts hon, I hope this gets diagnosed and treated quickly and easily.
1 person likes this
@lecanis (16661)
• Murfreesboro, Tennessee
7 Sep 07
I never knew I had an emergency mode like that, but I guess I do too. =) Thanks for keeping us in your thoughts, and hopefully we can get things figured out quickly.
1 person likes this