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JAYDEN'S MOM

three preemie mom

May 2008

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SURGERY! SURPRISE!

May 16, 2008 07:51pm (EST)

Well, I went to the ENT and of course, he still had the ear infection. The sinus infection was gone at least. So after 20 days of being on two different antibiotics, the Dr said "maybe we should do the ear tubes...think about it..." My answer was "how's Friday?"
So Jayden got ear tubes this morning! He was able to suck the little bit of infection out of the right ear while he was at it. So here's our hope: The ear infections trigger inflamation of the trachea causing croup. The tubes should head off ear infections therefore heading off the croup. Sounds like a plan.
So here's the OTHER part of what happened this morning....our ENT had made an educated "guess" that Jayden's croup problem was really caused by "sub-glottal stenosis", but it wasn't worth knocking him out for a minute test to confirm it unless there was another procedure to do (makes sense),especially since he was SO confident that that's what it was. Well, since he was doing tubes, he used the opportunity to do a bronchoscopy and an laryngoscopy. Now, I've said many times before that I love this Dr. Well, we now have an OFFICIAL diagnosis....he has "sub-glottal stenosis"! We also now know the extent....the trachea itself is fine, but the opening is the part that's narrow. Well, it's 40% smaller than it's supposed to be. Whoa....on the one hand. it does explain a lot and gives me some relief to know exactly without a doubt what we're dealing with. On the other hand, it freaks me out because let's face it...that's almost HALF the size it should be! No wonder this poor kid struggles to breathe when he's sick! And it looks like we'll have more ER visits in our future because the ear infections were only one of the possible triggers for the croup. I do feel better knowing that it's only going to get better from here because as he grows his trachea and the opening will both grow as well, so he can outgrow this at some point. I'm thinking it's going to take a LOT of growing to make up for 40%! UGH!
So we know what we're in for, and we're hopefull that between the tubes and the nasonex this kid should have SOME normalcy.I know the tubes work because my middle child (Tim) has had two sets already. Poor baby couldn't hear! His ear drums flatlined in his tests, and he ALWAYS had fluid and infections cookin' in his ears! Once he got the first set of tubes, his hearing was normal, his ear infections stopped and he started talking in sentences. go figure! They lasted a year, but once they were out he failed his earing tests again (right back to square one). So when he got the second set of tubes the ENT also took out his tonsils and adenoids. Those tubes came out this past September. His hearing isn't the greatest, but he really hasn't had ear infections this winter, so the Dr is holding off on a third set. We're just going to keep an eye on him. He's speaking ok (just LOUDLY) and he did very well in preschool this year. so we'll see!
OK, I feel better now that I vented. I'm going to see if I can actually get some sleep tonight 'cause you KNOW I didn't sleep last night!

Woodloch 2008 027

Posted by three preemie mom | Comments: (0) | Permalink

HEADED ONE OFF...

May 11, 2008 07:18pm (EST)

I have come to the conclusion that I will NEVER feel "comfortable" when it comes to Jayden's health. I thought for a while there we were past the whole "croup" thing, and then look what happened a few weeks ago. Well, he had the dual ear infection and was on the antibiotics for 10 days. The last two nights he was on the antibiotics he didn't sleep well (which is not like him), and LITERALLY the day after he finished the antibiotics he had a runny nose and my mother in law (who babysits for us) made the comment to me that he had a little cough during the day. Well, off we went to the ENT. Thank God I took him because he had a right ear infection AND a sinus infection! UGH!!!! So the Dr put him on a different antibiotic which seems to have worked because his cough stopped and he's been sleeping through the night all week. SO basically if I didn't bring him in,the infections would have caused the croup again. I'm glad we were able to head this one off,but at the same time I'm wondering if this is ever going to end!!!!!
On the lighter side of the news, we have a public health nurse who follows Jay's development incase early intervention is needed (she's FABULOUS and she also followed my other two boys so we know her really well by now!). We just finished his 18 month eval and he kicked butt!!!! He's actually speaking better than my other boys did at this point, and his fine and gross motor skills are "high normal". What a miracle! I guess God cut him a break because he has these health issues to deal with. We go back to the cardiologist in August. And I think we go back to the eye dr the same month....I hate those visits!!!! At least now I don't think he has to do the drops to pry his little eye open. That's the worst...I can't look! And the poor baby screams like he's getting stabbed or something. I walk out of there in tears, even though I know it didn't hurt him (it's being held down and the light in his eyes that pisses him off). I don't know how that Dr can work all day with babies screaming at him like htat! I think I'd go nutz!
So I have the follow up with the ENT to see how Jay's ear/sinus infection is healing.I panic every time he sticks a finger in his ear now.
Even with all of the craziness, I know I am truly blessed to have my three beautiful sons.
Happy Mother's Day everyone!!

Posted by three preemie mom | Comments: (3) | Permalink

HERE WE GO AGAIN...

Apr 21, 2008 09:00am (EST)

UGH!!! I guess I got too confident. Jayden has the croup cough again!! And we're away on vacation in PA! The good news is that the ER is pretty nice here.....
I'm frustrated. It actually started the night before we left (Sat night at around 11PM) so I had my husband call the ENT, but the ENT didn't meet us at the hospital. My husband thinks he woke the DR up and it took a minute for the DR to realize who we were, but I can't help but be dissapointed and a little pissed that he didn't meet me at the ER like he promised he would if this ever happened again.I'm going to remind him of that when we go for our follow up.
So we went to our hospital home, and they did the whole sterroid shot/epinephrine nebulizer like always. We stayed until 3:30AM and he was doing much better! They discharged us with orapred and the Er DR said to give it to himbefore we leave and he should be fine. My older boys were so excited about this trip to the point they were counting down the days and packed like a week ago, so since we had the orapred and the ER Dr's ok, we decided to come. We're only 3 hours away from home, so if we HAD to we could fly back home. When the croup cough came back last night we were like, "crap-now what". We decided to go to the local hospital here. They treated Jayden the same as they would have home, and the resort here gave us a humidifier to use. He sounds crappy, but he's not struggling to breathe. Actually, he's playing and running all over AND he's eating, so I guess I shouldn't complain. I'm just upset that it happened again. I should be grateful though because we had a few months break between ER trips. UGH!!
I'm hoping we can relax and enjoy the rest of this vacation...my older boys are having a great time at least! Danny and I are just running on coffee at this point!

Posted by three preemie mom | Comments: (1) | Permalink

STILL GOING STRONG!

Apr 01, 2008 07:56pm (EST)

keileys mom, I answered your comment, but it came up under "comments"!

Well, it's April...and Jayden has been doing SO WELL!! All of the sudden, he started talking a LOT! It's just so wonderful to see him developing "normally"! I'm less afraid to take him into public places now (I would get anxiety if he was around other kids because I would be afraid that he would catch "germs" and end up in the ER again). I had been avoiding church because I didn't want to put Jayden in the nursery, but because he's been so well, we went to church on Easter sunday which was just SO nice. My older boys went to their Sunday School classes, and Jayden didn't even walk into the nursery, but he RAN! He went right to the pastor's wife who is just sooo sweet! It was really nice to be back in the swing of things. And it's nice to be "fear free". The Dr is very pleased at his progress as well! We still see the ENT often, but we're down to every two weeks now.
So, I was thinking, Jayden is going to be 2 in July! That seems right around the corner! These last few months had been so difficult that I had forgotten how fast the time goes by.
I hope everyone is doing well!

Posted by three preemie mom | Comments: (0) | Permalink

ALWAYS SICK!

Mar 13, 2008 06:32pm (EST)

Well, what would a holiday be without one of the kids being sick! I shouldn't complain...things have really been going well! Jayden has a cold AGAIN (of course, Easter is coming). HOWEVER, I've stayed very calm and have not rushed him to the ENT. I took him TWICE with his last cold (and we're talking just a couple of weeks ago) and he was actually very pleased with what he saw! The fluid in his ears is gone (well, was at that visit) and everything else looked clear. I still can't get over that one! So I'm thinking "maybe he'll be like a normal kid and get colds without having to go to the ER". I honestly think it;s because he has the baby on Nasonex. He's on twice the adult dose, and there must be just enough sterroid in there to keep everything open and flowing. (he said he'd need like 40 sprays to almost equal one oral sterroid dose, and that the nasonex really just stays in his nose rather than the oral that goes through the body). Well, this Dr really knows his stuff!
So I'm actually hopeful! Maybe our croup days are behind us! Jay cut his eye teeth this week, so between those teeth and the cold he has now, I haven't slept much either!
AND, he only did that tick ONCE. I'm hoping he was just thinking about the Wiggles when he did it a few weeks ago (tilts his head during Toot Toot Chugga Chugga! LOL!) I'm going to drill the Dr a bit more about the PANDAS thing at our next visit anyway. Maybe he can run a blood test so I don't have to stare at the poor kid constantly and worry!
I gotta say, I REALLY AM hopeful now. My husband wants to go away for a week on vacation in April, and for months I was afraid. What if Jay got sick while we were away? I wouldn't want to go to an out of state hospital, but if he started with the croup I don't think he could wait a few hours to get to our hospital at home. Now I'm thinking, maybe we can go away and not have to worry about that. I'm not as afraid now. And with everything we've been through, we REALLY need to get away! (my mom has a chemo resistant form of Hodgkin's Lymphoma and is pretty much on her LAST CHANCE before experimental stuff chemo). Man, I'd settle for an over night trip in the next town over!!!

I pray everyone has a blessed Easter!

Posted by three preemie mom | Comments: (2) | Permalink

STRANGE CALM..STILL NOT SURE ABOUT PANDAS

Mar 05, 2008 07:19pm (EST)

OK, so it's March, and I realized that Jayden hasn't been in the ER since JANUARY! I can't believe it! We made it to just about TWO MONTHS without an ER visit! YEAY!!!! He has been to the DR once a week (that WONDERFUL ENT we have), and I gotta say, the man is working MIRACLES! So on those nights he's up crying all night because he's cutting teeth I have to remember how lucky I am to be spending the sleepless night home rather than in the ER!
So he's been off antibiotics for a while now, and we were told to watch for ticks and stuff because of the PANDAS thing. I'm a teacher, so I asked our school psychologist if she heard of PANDAS, and she said that the students she saw who had it really ended up with some motor skill issues. That made me feel a LITTLE better. SO what does Jayden do on Sat? He starts the tick where he harshly shruggs his right shoulder into his right ear. He has only done it once, so I hope it was just a fluke. I guess the only thing we can do to see if he has it or not is a blood test to check for strep antibodies or something. I'm still over the moon that his heart is doing so well, so I'm kinda numb about the whole PANDAS thing. I don't know.
Well, I have to go as my three boys are making SO MUCH NOISE in here that it's hard to think straight! It's great noise though...they play so well together! And I know I'm blessed to have them here and relatively healthy to boot!

It's funny, a friend at work is 18 weeks pregnant, and I keep thinking how I was on bedrest at 19...and another friend is 38 weeks pregnant, and ALL of my boys were born and home by then! Nick was almost two months old at 38 weeks, Tim was over a month old, and Jayden was two and a half months old at that point! How strange!

Posted by three preemie mom | Comments: (1) | Permalink

GOOD NEWS AND SOMETHING NOT SO GOOD...

Feb 24, 2008 01:13am (EST)

So we had the cardiologist last week and got such GREAT news! The hole in Jayden's heart suddenly got "significantly smaller" so he's at a point where he WON'T need surgery to correct it! It had been open 4.3 mm, but is now only open 3 mm. Apparently a child can live a long happy live with a hole that big. I'm more optomisitic though - I think his heart finally got the idea of what it's supposed to do and will either get even smaller or close. I gotta tell you, he is living proof of the power of prayer!
So I told our ENT the good news, and he's just sooo sweet. When I said "I have good news" he stopped, looked at me, smiled and said "Do you know how long I've waited to hear you say that!?!?". SO after I told him, he said "that's so great! I mean, this is big - you're talking his heart! Not like tonsils or anything!". I love this guy!
So during the exam, he said Jayden still has fluid in his ears. So he wanted to "recap" his med history with me and started asking how many bouts of tonsilitis had he had in the last 6 months, how many ear infections ..... and through conversation (basically that we think there were many undiagnosed because of all the croup crap) I mentioned that Jayden used to have this "twitch", and I had been concerned about it. His pediatrician told me that it was not a marker for autism (I worry) and that it was probably just something he learned to do, or maybe his ear had been bothering him. Well, my ENT put his pen down and started talking about something called PANDAS. It's a pediatric autoimmune disease caused specifically by the strep virus. He gave me a sheet with some info on it, but of course I googled it when I got home. It seems as though when a child gets a strep virus, the body produces antibodies, but the antibodies somehow get "confused" and start to attact a part of the brain that controlls behaviors. basically causing ticks, twitching, OCD and sometimes "deviant" behavtior. Hmm. And the symptoms get worse when the strep flares up. So I had said "Well, we haven't seen it in a while actually" and he said that we wouldn't see symptoms if he was on antibiotics (which has had been on for a while). So now I have to worry about this! UGH! OF course it is possible he doesn't have it, but now we have to watch for it. So get this - he's totally into the Wiggles now (like my other three were) and he tilts his head because that's what they do in a few videos (for like Toot Toot and Captain's Magic Buttons), so now we stare at him like "is that the twitch or is he just dancing"?? UGH!!! Well, like I said before, power of prayer.....I'll just pray that those twitches were nothing and that we will have smooth sailing from here on out!
And a LITTLE more good news...I haven't had a panic attack in a few weeks!!

Well, I should try to get back to sleep. Jayden had gotten up, so since I was up to change him and put him back to sleep, I figured I'd jump online! Good night!

Posted by three preemie mom | Comments: (0) | Permalink

OPTIMISTIC AFTER A LONG WEEK...

Feb 09, 2008 01:08pm (EST)

Well, today is a good day. We've had a few good days actually! Jayden made it through the weekend without having to go to the ER, so Monday we went to our ENT (and I can't tell you how FANTASTIC this man is). Jayden had an ear infection and tonsilitis. BUT because he had the explosive poops the week before with the antibiotics, he wanted to wait another two days before getting him on antibiotics again (more time for his poor intestines to recover, and then a little extra time to be sure it wasn't a viral thing). He said to me (not kidding) "At this point you have no reason to worry - you have a pediatric ENT at your disposal 24/7. CALL ME if you have any questions even if it's 3:00 in the morning". How great is he???
So we had to sweat it out until Wednesday. Well, by Wed the ear infection was in both ears and it was starting to go into his chest. SO we started the antibiotics. We were then at the Dr Thurs and Fri (the man opened the office for us both days after his surgeries just to make sure Jayden was OK). One ear is clear and the other is much better. His tonsilitis is better and his chest, although still a bit funky is better. He said to call if we needed him today and he'd meet us at the office, but Jayden is SO out of the woods now! NOT EVEN COUGHING! And the funny thing is that he's on the SAME antibiotic that he was on when he had the poops. We seriously think the poops were due to a stomach bug rather than the antibiotics after all, but we have Jayden on "probiotics" anyway to balance out the bacteria in his intestines.

So we are SOOOOO optimistic right now! He made it through a yucky week without it going into the croup cough!

And even better yet, the Dr said this should be something he grows out of! Yes, there IS light at the end of the tunnel!

And even BETTER news, I have not had an anxiety attack since MONDAY! And it's a good thing too because my husband used the rest of the wine I was drinking in the sauce when he cooked Sun night's dinner! LOL!!!!

Even with Jayden being "better", we are still in for weekly trips to the ENT to try and catch anything else that might start before it gets out of hand. It's a "domino" effect. Stop the ear infections, then there's nothing to drip into his throat and cause the subglottal stenosis flare up. If he keeps getting ear infections, then we're looking at ear tubes. hey, I'll take tubes over ER trips any day!

So of course, now that I'm on a "high", I worry about his heart. We have the cardiologist on Wed to check out his atrial septal defect. Wouldn't it be wonderful for that to go our way too? One can hope....I just feel like I'm waiting for the other shoe to drop, you know??

Thank you so much for your comments. This "blog" thing has been so helpful for me emotionally. I'm thinking I can handle things without meds right now. hey, can't ask for more than the ENT we have, right??

Here's to a good week!!!
Alison

Posted by three preemie mom | Comments: (1) | Permalink

HERE WE GO AGAIN...

Feb 03, 2008 07:21pm (EST)

I've been freaking out all weekend because Jay has been coughing with a runny nose. He started pulling on his ears and just started a low fever a few hours ago.On the one hand I feel like hey, if he gets the croup cough again and has the ear infection again then the ENT is totally on the right track, but at the same time I'm waiting for that cough to start to rush out and end up in the ER all night. Of course he had to get sick over a weekend...... I guess I can hope that this is just head congestion and may not end up causing the subglottal croup cough. I'll know in a few hours I guess.
So meanwhile, he's behaving normally.I'mthe one who's a mess! I keep watching his chest as he breathes. He must think I"m nuts because I also keep putting my ear to his chest to listen...not like I really know exactly what I'm listening for, but I listen anyway.

I hate the waiting! I hate the worrying and the "what if's" that go through my head. My stomach is actually sinking just thinking about going to bed because I know that the second I close my eyes and relax is when he's going to get worse.

At least I do have the sterroids in the fridge. I'mholding off because he's breathing ok,but at the first funky cough, down the hatch it goes!!

If he can just hold off 'till tomorrow....then I can get him over to the ENT and see what's going on.

My poor husband caught me crying before.I found with everything going on in my life right now that I've been having anxiety attacks where I feel like I can't breathe and need air (which usually goes away when I stick my head outside). I also cry a lot. He's terrific and is really supportive.Totally understands because hey, he's feeling what I'm feeling too! Some of my friends suggested I go on "happy pills" to help me deal. I'm torn. On the one hand, Ifeel like I should be able to handle all this stuff. On the other, I feel like what kind of mother and wife can I be if I break down so easily. God willing, this will all be temporary and end SOON! I'll just stick to an occasional 1/2 glass of wine at night for now.

Sorry - I had to vent tonight!!

Posted by three preemie mom | Comments: (2) | Permalink

AN UPDATE ON JAYDEN

Feb 01, 2008 08:07pm (EST)

Wow- thank you Karri and Lori so much for leaving comments for me. I can't tell you how good it made me feel!! Then again, I'm the newbie, so I guess you do know from being a part of the share community!!

Someone asked me yesterday with everything going on what I've been doing for myself (see, my husband has had kidney stones TWICE in 6 months and had a severe asthma attack in November that had him in the hospital for a week, and my mother who now lives with us has been battling Hodgkin's Lymphoma for over a year - for such a "curable" cancer her's is stubborn and won't go away!). I have to say, I really don't do anything for myself, but I do consider joining the Share Community my first step. My husband is finally getting back to being himself (passed a stone literally while I was at my last ER visit with Jayden) so maybe I can get him to watch the kids for an hour so I can go to the gym once or twice a week. I've also been a bit lax with my housework and sitting with my boys and playing with them more this week. They have such great personalities....makes me wish I could stay home with them even more!

So, last entry Jayden was sick from the antibiotic, so I had called the ENT who said to stop the antibiotic and come in the next day. So yesterday after work I dragged all the kids to him (no sitter). The GOOD news is that he said Jayden didn't have any puss in his ears, so we don't have to worry about another antibiotic. He does have fluid in his ears though, so he's going to see him again next week (the Dr wants to see him once a week for a while to keep a close eye on his ears to prevent a future ER visit if possible). The bad news, my poor Timothy (middle child) has a dual ear infection AGAIN! I have a feeling he's going to end up with more tubes again. The Dr wants to see him again but is planning on waiting till summer to even begin talking about tubes again.

Nick (my oldest) stopped getting ear infections when he was 1 1/2 when we switched him to soy milk, but had his tonsils and adenoids out when I was just pregnant with Jayden because he had sleep apnea, didn't really eat, and you could hear him breathing a mile away. His adenoids were actually growing up and plugging up 90% of his nose! What a difference since his surgery! Timothy believe it or not had his tonsils and adenoids out the weekend I was put on bedrest with Jayden! That was horrible because I couldn't be there for him, and since he was so young (2) he had to stay overnight in the hospital with my husband and mother-in-law! All I could do was call and check in. UGH! My sister-in-law had Nick because I couldn't even care for him at the time! Tim had his tonsils and adenoids (gee I hope I'm spelling that right!) out as well as his second set of tubes put in. Those tubes lasted until this past Sept (which is really good for tubes), so we were hoping we were done with all of that. He's been pretty good, but now two infections in a row, fluid and bad hearing tests...who knows.

Since my older two had ear issues, it leads me to believe that I will see the same path with Jayden. Then again, maybe tubes are what he needs to end his subglottal stenosis issues. OR maybe it was a soy allergy after all, and being on rice milk will be his "cure". Only time will tell.

I am thankful for this site so I can get this stuff OUT of my head and hear from people who understand!!

Alison

Posted by three preemie mom | Comments: (1) | Permalink

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