My child could have (but didn’t) die and it’s because of my careless mistake.

I haven’t posted in a very long time. I am back because I want to share this recent incident that happened. It’s a true scary story. We found out Milo was allergic to peanuts when we introduced it to him when he was one year old. He is now 9 years old. He gets tested every year and he is still very allergic. Another known time that he had peanuts, aside from his first tiny dose at age one, was mistakenly given to him by his VI specialist at his preschool when we were not with him. Milo’s reactions were hives and profuse vomiting. EpiPen is always with us and we never had given it to him until yesterday.

I have been very vigilant at reading food labels since we found out he is allergic to peanuts. As the years gone by and with no incident, I have come to realize that I am not as vigilant as I used to be. I learned this because I was very careless and gave Milo a cookie that contained peanut paste. Yes, you heard me. I fed my peanut allergic child peanut. I made a horrible mistake and gave him a cookie without being thorough with looking at the ingredients. It was a chocolate cookie and by seeing that, it subconsciously gave me a reason to not have to be so detail with examining the ingredients carefully. It was wrong, very wrong. I was wrong, very regretfully wrong.

 

Milo had the cookie, got into the car and headed for hjs karate lesson. He felt bad soon after and my husband called to ask me if he ate something new. I said yes and right away I thought F—! and grabbed the box and started looking for the word “peanuts” and there it was “peanut paste.” F–K! was right. They came home and we gave him his Benadryl and waited out for his throw up. We watched for hives but there were none. This was the first time (thanks to me) that we are with him and actually know that he ate peanuts. We did not know how his body would react since each allergic reaction can be very different. It was decided we should take Milo to the emergency room because we read that anaphylactic reactions can happen hours from intake. Soon after Milo got into the car, he threw up and he informed us that his throat is very itchy. My husband called 911 and administered an EpiPen (for the first time ever). The fireman and paramedics came and took Milo to the hospital in the ambulance. Milo was still very chatty with all the firemen and paramedics so it was a very good sign that he was stable.

 

Milo stayed in the hospital for couple hours and since we are not too far from the hospital, he was discharged. Milo was a trooper and so was my husband. I felt horrible and full of guilt but none of them made me feel bad or said a word about what I did because of my careless mistake.

 

The day surprisingly went on like it was planned. Matilda had a pool party in which she attended and had a blast. She did asked me if Milo was going to die while I was taking her to the party. I told her that Milo will be okay because we took all the steps we needed to and if we didn’t, he could die. Owen was over the moon with having the firemen in our home along with the firetruck and a fire paramedic truck in our driveway. I even made it on time to Milo and Matilda’s back to school night (along with my sweaty self and an amazing amount of guilt and relief that Milo was okay).

 

The image of me not reading the instructions carefully kept repeating in my mind along with what if I can go back in time thought. I know I can’t do the latter and that is why I am sharing this with you all so that it won’t happen to you or anyone you know.

 

 

This is my story and luckily it has a happy ending. I learned a very important lesson and so did the rest of the family. Milo learned how serious his allergy can be and that it can be lethal. Matilda also learned how serious it can be. Owen learned that when Milo has a boo-boo, the firemen and paramedics come to our house. We all learned to be vigilant again. Milo learned to remind us about reading the ingredients and that he needs to read the ingredients as well and not rely on others (perfect example of how his mother cannot be trusted). We learned that we have to be more aware of others who also have allergies. My husband and I both learned that getting immediate medical help is the way to go, whether or not there is any immediate reaction.

 

It is very very important to take action when your child (or an adult) comes in contact with the food he/she is allergic to. It is crucial to go to the hospital. Reactions can take hours to happen and sometimes if you wait for a long time to do anything, the result can be lethal. It really is better to be safe than to be sorry.

 

Judgement or no judgement, I don’t care. I just want to share this because we all can get too comfortable at something that we shouldn’t. This is how I will end this post – Hi, I am a mom and today my child could have die because I got too comfortable with his peanut allergy and made a stupid careless mistake.

 

PLASTIC GROWS. IN MY LITTLE DUDE’S EYE.

It has been awhile since I last post a post. I’ve been thinking of you and how much I want to blog but my parents were in town visiting us for the past month and we were too busy with our bonding time. But here I am and let’s get right to it.

February was a month of seeing all of Milo’s specialist – all 4 of them (we had to update all of them on all the crazee things that went on with Milo especially the scary eye bleeding). He had an EUA and his doctor reported to us that he found this little piece of plastic in Milo’s eye. He said he knows plastic do not grow but somehow Milo’s eye grew plastic since they removed his valve in November and that explains why he bled in December as well as in February. We were just happy that they were able to figure out the reason behind his bleeding because I did not want to think my child is an eye bleeder like a nose bleeder. Of course after we were told this information, it took awhile to sink in and after the doctor went back to the OR, I wanted to ask him if it meant that they accidentally overlook and left a little piece of plastic in his eye during his November procedure. The part that got me upset was that we have taken Milo in to see his other specialist after his procedure, but none of them have seen the left over plastic. We actually went in to see his fellow one week prior to the EUA because Milo’s eye was bleeding again and she just shrug it off like it’s your standard nose bleed. So, what the hell was that? Are they not able to see that without putting him under? It all worked out in the end and it was nothing too serious, but seriously, it now makes me have doubt on the fellow and I am not sure if I would trust her. I don’t think she is or will be reading this blog, but if you do, sorry but my kid is way more important than you are.

Milo already outgrew the scleral shell from Thanksgiving and we got a new mold made but unfortunately it got lost in the mail so now we have to wait a little bit longer. Matilda is officially a walker. She started over a month ago but its just in the past week that she got very good at it. She rather walks than crawls now. So, watch out world, you can’t stop her now.

I will post pictures of the kiddies soon. I’ve been wanting to do that since the holidays and our vacation and now it’s getting too ridiculously late and I promise I will. So, hold on a little bit longer.

And oh guys, Spring is here because bugs are out. They are in our house already and I do not like them. If there is such a thing where I can have some sort of laser bug detector bubble around my house to prevent the bugs from entering, that would be super and please tell me the 1-800 number to call so I can order. Or if you have the same idea and want to get in on this invention, give me a call. Sorry bugs, I don’t really care for you but when you are in my house, then I care and I kind of have to get rid of you. Please just don’t come in so I don’t have to be mean to you. Thanks.

HELLO TO YOU AND TO YOUR TWO THOUSAND AND TWELVE.

Happy New Year guys. I am hoping everyone of you had a wonderful holiday in your own little way. We went on a vacation and we had an awsum time, but I must tell you guys that it started pretty bloody wild. Literally bloody wild.

On our 15 hours outbound flight, Milo’s good eye started bleeding. Yes, BLEEDING. We still had over 8 hours to go until our destination at that point. We thought about what exactly constitute as an emergency landing and if we were to land, I think the closest place at that point would be Japan. And of course to top it off, Milo started throwing up soon after the bloody discovery. And eventually his nose started bleeding intermittently as well. So, for the rest of the flight, his good eye and nose were bleeding and he was throwing up pretty regularly. It was the worst flight of all time. I kept thinking and panicking to myself that oh crap, is he going to loose his vision right now, right before our vacation starts, right before I get to show him all these cool stuff on our vacation and right before we meet up with his grandparents that he has been so eagerly looking forward to visit with.

I called my parents when we landed. I kept thinking of ways to break it to them without freaking them out, but there wasn’t really a good way if I had to use blood and Milo’s good eye in one sentence. We got really lucky and was able to see my dad’s ophthalmologist. The wait time before we saw him was scary. Milo kept saying I can’t see. I would gasped each time but I realized it was because of the giant puddle of blood collected in his eye. The ophthalmologist concluded that Milo must have rubbed his eye hard and made a small incision. He said it’s not uncommon at all and it does happen all the time. A giant sense of relieve was released in the air between myself, my hubby, my parents and possibly the kids.

Milo’s eye bled for couple more days. Matilda caught a cold on the plane and then we all caught it as well. SO, after a week of blood, vomit, and cold, we were so ready to play and we sure did. We had an awsum time and the kids loved seeing all the excitements and holiday decorations throughout the city. We ate all kinds of good food, with the exception that we ate at only two facilities since we wanted to be super safe due to Milo’s peanut allergy. We shopped at all different kinds of toy stores and I keep going back to my favorite store, MUJI. We took Milo and Matilda to Disneyland too.

Time went by super quick and it was so sad to go but I am so happy that we went and that it all worked out and no other crazee medical issues happened.

I want to write a little thing about traveling with special needs children, so, if you have no interest, then Happy New Year and I wish you guys the best of 2012 and I promise that I will try to post more this year and illustrate more. But if you are interested, here it goes. Being away from your home and really, from your own stuff is pretty hard especially when you have kids or special needs kids. During our trip, Milo didn’t like to walk much and it was not easy to carry a 3.5 year old around. Milo did not want to walk because there were so many people and they were all moving at a very fast pace and for being visually impaired, that makes it pretty darn scary and intimidating. It took Matilda awhile to get used to all kinds of loud noises. She turned her head a lot and was looking at me often for possible explanation as to what and where the noises were coming from. Being hearing impaired, it was challenging to be in such a place but at the same time I thought it was a good experience for her to learn to locate sounds. Milo was more challenging during our vacation since he is older and he is not as easy to carry compare to Matilda. (I used to ergo him in our past trip and he felt very secured with me holding him and we would talk about all the things we were seeing.) We wanted to take Milo to many places but we had to keep in mind of what he might like and not like due to his limited vision and whether or not he would be able to see them. I kept wishing there were some sort of ergo like thing for older kids with special needs. I wanted to ergo Milo but my hubby thought I was crazee because my back would have been dead if I were to walk around with Milo. Matilda was in the ergo everyday and she loved it. I guess a stroller would have been perfect but being in such a tight city, it was hard to get around. My hubby and I each had a pretty decent size backpack filled with Milo’s emergency medical supplies, extra clothing, diapers, wipes, Matilda’s baby food and snacks. It was okay when we didn’t make any purchases since we still have our hands to hold or carry Milo and Matilda, but when we did have shopping bags, it was a pretty good workout. I just wonder what your thoughts are and if anyone have any tips on traveling with special needs children. I really want to travel more with my two kids and especially with Milo because I want him to see as much as he can before his vision completely goes, but at the same time, I am reluctant to take him far because it is kind of a pain and also I am afraid to be far from his team of doctors after our bloody plane ride experience. Maybe I can win some kind of awsum ultimate vacation where when I travel with my kids, I would get car service following me around and have access to anything I want so that I know I can always reach doctors for my kids and that I don’t have to worry about Milo not walking. I want stress/medical free trip for my special needs children. All advices and tips are much appreciated.

Anyway, I think I win with this crazee bloody hell plane ride. Happy New Year guys and 2012 better rock your world.

xoxo
me

MY KIDS ARE SERIOUSLY SUPERHEROES. NO DOUBT.

Let’s get right to it people. My sense of time has been on drugs recently or at least it feels like it because of all the unexpected medical stuff that has been happening nonstop since first week of November. I have to keep reminding myself that it is no longer November.

After Milo’s whole asthma attack (see post), we had about 5 uneventful days where we got to catch up on those days when Milo was in the hospital. Right before Thanksgiving, Milo went back to see his ocularist and got another impression done since he already outgrew the one he got one week prior. Milo is still not happy with the process of putting in and taking out the shell but at least it’s not bothering him when it is in his eye.

Milo had an EUA just last week and the good news is that his pressure is stable. The tube part of his Ahmed valve has worked itself out to the top layer of his iris, so the doctor removed it since it wasn’t functioning anyway. He left the plate part of his implant in since that would be a bigger procedure. At the same time, his glaucoma doctor discovered a shallow retina detachment and a retina doctor took a look and reported no damages as of this moment. It is just sitting there taunting his vision and my stress and worry. The recent discovery of the shallow retina detachment is sitting behind the laser wall that Milo got when he was 11 days old (he got a laser surgery to prevent his retina from further detachment, hence, his vision on his only seeing eye is not so good). And according to the doctor, it will do no threat to his vision unless it breaks through that wall. The really sucky part is that it doesn’t slowly happen or it does not creep up to the wall, it just happens and when it does, there goes Milo’s vision. It may never break through that wall but the fact that it exists is driving me crazee and making me worry. The doctor told us that we will know it break through when Milo’s vision worsen. How great is that. No warning sign. I am not even sure if this is something they are able to see at a regular office visit.

We’ve been prepared since day one that Milo’s vision will never get better and that it can and might get worse, meaning he will be completely blind. He has been doing so well in his three years of life and seeing more than what all the doctors have expected which made my expectations way higher. I know Milo would still be fine if he were to have no vision, but it’s just not fair. That’s the best way I can put it.

The night of his EUA, Milo threw up all over our bed (he barely ate anything that day since he was so whiny and was complaining of pain). The next day he pretty much threw up all day and even had diarrhea. At first we thought it was his reaction to the anesthesia but it was probably a stomach bug he caught from the hospital. The next day he was better and then he started complaining about pain in his right eye. We spoke with the doctor the day before and she did tell us that he might be sore from the EUA and the tube removal. The next day he woke up crying/screaming and refuses to open up his eyes because it hurt and he was very light sensitive. Eventually we got him to snap out of it and he opened up his eyes but still had complaints about his eye hurting a few times. The next two days were pretty much the same except that he didn’t really open up his eyes at all. Luckily we had a scheduled routine appointment with his ophthalmologist so he was able to check his eyes before the weekend. It turned out that Milo had an infection on his right eye and hence the pain and light sensitivity. It’s been almost a week and it’s almost all better. We went to see the ocularist and he did a minor cosmetic adjustment on his shell and after 2 days, he had some discomfort so we went back to see him and it was just a minor scratch on the shell that he had to smooth out. SO, now with only a few days left before we leave for vacation, I really hope that nothing else will happen. Because really people, what else can happen. I think in the month of November and up to today, we have covered the whole spectrum of Milo’s eye conditions, from his retina and glaucoma to his prosthesis and then to the surprising asthma.

And oh yes, my little Matilda. She barely got much time from us because we were so busy with Milo. She has been a great little sister and was easy to take care of during all of this as we go from doctor’s visits to hospital to just being in a dark house while Milo was in bed. But there was one day when I did take Matilda in to see her doctor because I noticed a decent size lump on her breasts and some discoloration. An ultrasound was done right away and it’s benign but we have to keep an eye out in case it changes. The last thing I need is for my kids to have more crazee medical crap because I already got way too many going on. If I were to ever encounter a person called GOD, I would say, DUDE, what IS up with all this stuff with my kids and why and what the hell were you thinking?

This is the story of my November and December. And I can’t wait til our vacation and to report to all guys about our awsum trip and how we had no medical surprises afterward! Let’s cross those fingers and whatever else you are supposed to do to make bad stuff go away. And to practice, let’s make this new sick feeling I am getting tonight be gone by the time I wake up tomorrow.

I BUMPED MY HEAD WHEN I RODE THE AMBULANCE FOR THE FIRST TIME.

I am still trying to catch up in time with the rest of you. It was a crazee medical week last week. SO much to share and here it goes. Milo’s first night time trick-or-treating was good. We made it halfway around the neighborhood before he got too freaked out with the darkness. I think it’s just too much for him visually especially when there were lots of blinky halloween decoration lights.

Last week we had to take Milo to the urgent care at the clinic for his wheezing and he ended up in the hospital via ambulance for 4 days and 3 nights. It turned out that he had a pretty significant respiratory distress secondary to an asthma exacerbation. (We did not know he has asthma and this was the first time ever.) His oxygen level was pretty darn low for awhile and eventually he only needed his medication every 4 hours, in which it was safe for him to go home. Those couple days were very hectic. Matilda and I would run home in the evening and in the morning we would hurry back to the hospital to hang out with Milo. My hubby stayed with him every night and he would go home when I am there just to shower and get more supplies for the night.

Milo was discharged on Wednesday afternoon and it is so nice to have him back home and just have everyone in the house.

The next morning, we had to get up insanely early to go see his ocularist for a prosthesis scleral shell fitting. We made this appointment over 2 months ago. All in all it wasn’t too bad. Milo was not put under for the whole process. The impression was made at 8am and we went back at 11:30am for the shell. Milo was not too happy about it but he survived and so did we. We have been taking the shell out daily and each day we add more hours on his wearing time so that he can adjust better. It is pretty scary to put it in and take it out, especially the first day, and especially difficult when he is crying and squeezing his eye real right. After the first day, we noticed the shell turning sideways and it is still doing that on day 4. The ocularist told us to try it for a few days and if it’s still happening, we would need to go back for another impression. Milo does not have much luck with prosthesis but at least it’s not like last time (or at least not yet).

This past week was a crazee medical week. We pretty much lost a week and I thought Thanksgiving was in two weeks but realized that it is next week! I want my week back. I am so behind in everything, let along have time to blog. There are so many things I need and want to do. I guess I can catch up if I give up this week’s sleep but that is not possible since catching up on sleep is one of the things that I’ve been wanting to do since I had Milo. And most importantly, poor Matilda seemed forgotten last week because we were just so busy with Milo and she was so great at being so easy for me.

In sum, Milo is doing well since his asthma attack. He has all these inhalers he has to take and one of them is every 4 hours (my hubby gets up in the middle of the night to administer it) and hopefully he can cut down a bit after seeing his pediatrician. Now, I need to go and purchase a giant bag, a cute one of course, to put all his medications (eye drops, Epipen, inhalers, sclera shell case) so that it can easily be transfer between bags.

BUT WE GOT OUR TURKEY. I wish I can time freeze like that Evie girl from Out of this World. And if I could, I would rent out my time freezing fingers to others and can make some good money and not have to worry about getting projects while being a full time mom.

P.S. – Update to my last post about my Yo Gabba Gabba tickets, the people at Yo Gabba Gabba are so great at responding to my email and have been wonderful. The supervisor level people at San Jose Team email me and told me that they are dealing with the issue. San Jose Mercury News email me and told me that they will keep an eye on it (whatever that means). And I received lots of direct message due to the post which all has been very nice. I am still spreading word around when I can. I know the parents and staff at Early Staff appreciate my story and will know how to deal with situation like this in the future. Thank you everyone. xoxox – don’t mess with me because i will do something about it.