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juillet 31, 2005
Happy Birthday Girl
Happy Birthday Maddie!
Look, I cut my hair all off!
Despite it all, I'm so glad my little one continues to make me laugh...even at 11:00pm when this picture was taken!!!
Katie has given me the courage to post a picture of me with my girl at the beach! (sorry about the bikini, Mike picked it out...;)
Posted by carriec at 03:46 AM | Comments (3) | TrackBack
juillet 26, 2005
We're home!
Hi everyone,
We're home now! Maddie had lots feeding tests today, which we able to do while we were in the hospital, so that was nice. What prompted this last bronchoscopy was a coughing/choking episode that both Mike and I heard coming from her crib on Fri. night. At the time I didn't really think too much of it because it was coming from her crib, and I thought that maybe she had just been sucking on her blankie and gotten it a little too far in. She's been coughing so easily lately. She was coughing more than normal on Sat. and had a huge coughing episode eating Jell-O, so I investigated her crib further on Sat. night and found a chunk missing from a brand new board book... So, decided to watch her a bit more closely on her b-day (Sun.) and see if there was any improvement, but she was still coughing a lot when eating. So, Mon. I called the ped. to tell them what was up and see what they wanted us to do, which of course, with her history, was to take her to the hospital to do another bronchoscopy to look to see if there was anything in there. (If you leave a foreign body in the lungs it can cause a lot of serious problems later). The ER doc. said her breath sounds were abnormal so I felt pretty good consenting to surgery. Well, they didn't find anything in there this time. So I guess that's good but sad that Maddie had to go thru surgery again. We did however get several consultations from different doctors on these problems we've been having. The general surgeon doesn't believe doing a dilation on her esophagus is going to help at all and when he put the scope down her esophagus it slide in nicely, so that goes against the scar tissue theory. So, at this time, probably not going to do the esophagus surgery, though I think if she truly aspirates again I will push for a resection where they remove a small portion of her esophagus (the portion that may be giving her trouble). Her feeding studies looked completely normal, so no answers there. The biggest issue we're having right now is her coughing episodes while she's eating because they are always going to want to do a bronchoscopy if the episode is severe enough. The reason she's coughing so much is that dang apple probably did a little damage to her lungs that has caused them to be more "reactive." So, we saw two pulmonologists today and they are going to up her steroid inhaler dose and if there's no improvement in the coughing, they will put her on a course of oral steroids; we've got to get this part solved so we don't have to do unnecessary bronchoscopies. About what caused her to aspirate the apple (and chicken), still don't know. The surgeon did say that her heart defect could have damaged the peristalsis of her esophagus (this is the muscular movement controlled by nerves that moves food down the GI tract). We can't do anything to fix the nerves. So, we just are doing what we've been doing. We may start her on some bigger chunks of food soon, we'll see. She passed the feeding studies with flying colors, but of course she didn't cough once for them...Murphy’s Law. Not too concerned with that though because she didn't cough while she ate before she aspirated the apple anyway, and we know she's coughing now because of lung irritation from the surgery and apple. So, I'll let you all know if anything changes!
Posted by carriec at 06:50 PM | Comments (2) | TrackBack
Another day, another bronchoscopy...
More updates later...we're at the children's hospital.
Carrie
Posted by carriec at 01:54 AM | Comments (0) | TrackBack
juillet 21, 2005
Madeleine's Turning Two!
We're having a small b-day party for little Maddie at our house on Sun. Let me know if you can come and I'll e-mail you with the details. The theme is "Fish" because she's obsessed with fish. We didn't send out invites because we didn't know with what's going on if she was going to be in surgery, or what...
Posted by carriec at 03:06 AM | Comments (1) | TrackBack
Maddie's Anatomy
OK, well...unfortunately the MRI was somewhat inconclusive as to the source of the aspirations. Her heart looks really good and there is at this time no need to do thoracic surgery again, yeah, (no really obvious scar tissue that has reformed the ring around her esophagus and trachea). The MRI did show, however, that her trachea is still very compressed (but that's expected). And we know from the upper GI that her esophagus is still compressed by 50%. So, the current theory is that there is either scar tissue that is compressing the esophagus, or that the esophagus has not bounced back, so to speak, from the heart surgery. Either way, the docs are thinking that what we will need to do is stretch the esophagus out. This is a surgery done at the hospital and that is all I know right now; I have an appt. with the general surgeon (the same one that got the apple out) on Aug. 3rd. Now, in theory, this esophagus narrowing shouldn't cause her to aspirate, but, as her pulmonologist said, she has had an unusual presentation for a very unusual heart defect, so she kind of throws all norms out the window. He definitely thinks the esophagus being so narrowed could be causing her to aspirate and he's the lung guy so I trust him. Before we proceed with the esophagus dilation, we will do another "swallow study" (they watch her eat under x-ray) and see if that comes up with anything. If that doesn't show anything (her previous one was normal) I think we will proceed with the surgery on the esophagus. Unfortunately we don't know what her esophagus looked like in say March to be able to compare with now. If we could we may be able to more accurately say if it's either scar tissue or just that it hasn't stretched out. For now I'm thinking (because she had no problems for around 7 months) that it's scar tissue that has constricted her esophagus again and it's having a constricted esophagus that for some reason causes her to aspirate, remember the chicken aspiration that happened last October, the only thing really substantially wrong that was related was the esophagus being narrowed by 70%. So, we're only looking at a 20% improvement. We did see an ENT guy today and there is nothing wrong with her vocal cords or anything else in that area. So, as of now, she's still on a strict puree diet, and she's taking two breathing medicines (Flovent and Atrovent; her lungs weren't a big fan of having something acidic in them and for some reason she's been coughing a lot when she's eating). We are waiting on the swallow study and we will probably go back to feeding therapy to see where she's at with that, just make sure she's doing as well as she was the last time we were there.
Thanks for your thoughts and prayers!
I tried to upload a picture from her MRI (we have all this great video and pictures of her MRI on CD-ROM) but was unable to (I guess it was too large and I couldn't reduce it enough). Anyway, you can go to carepages.com page name
mcaudle to check it out.
Posted by carriec at 02:49 AM | Comments (0) | TrackBack
juillet 16, 2005
Good News
I don't want to jinx it, but it looks like we'll be getting the MRI on Mon. or Tues. Thanks for your prayers!
Carrie
Posted by carriec at 01:03 AM | Comments (0) | TrackBack
juillet 15, 2005
No news is bad news
We're still waiting on the MRI. I'm quite annoyed at this because my little girl is starting to refuse to eat anything that is not the consistency of Melba toast. Right now the MRI is scheduled for Aug. 16th, which is ridiculous, hello, no doctor would ever put an adult on a puree diet for 2 months, please. (1 month to MRI, then est. of 1 month to surgery). Plus I am scared to death everyday that Maddie will totally block her airway, a very scary thing. So, I'm not happy, my ped isn't happy, but we've yet to find out who in the world has the say in the timing of this MRI, and why in the world do they not feel that an underweight 2 year old (90% height and not even on the chart for weight) on a puree diet deserves some sort of expediting. Everyone in the Caudle household is on edge right now; Maddie is usually in such a good mood even if Mike and I are grumpy, but the poor thing is starving, and like her daddy, is incapable of positive thoughts on an empty tank. And I'm even underweight now (according to the CDC), so this stress isn't helping me either. Please everyone pray that we get this dang MRI soon. We gotta get this all taken care of to preserve our family's sanity. Merci beaucoup!
Posted by carriec at 04:02 AM | Comments (2) | TrackBack
juillet 08, 2005
Some Answers (Maybe)
Well her upper GI test was abnormal and showed that her esophagus is being constricted by 50%, before her surgery it was 70%, so basically something is wrong. Most likely she has some scar tissue that has reformed the ring around her esophagus and trachea (food and wind pipes). She will definitely be getting a cardiac MRI that will best visualize what the heck is going on in there. And, unfortunately, she will need surgery again to correct whatever it is. Same surgery, same place, different time (sigh). It's a relief to have some answers, but I'm nervous about getting it all taken care of before Aug. 4th when I'm going to France for a week [ofcourse, non-refundable, non-changeable ticket with no trip insurance b/c I bought it ultra cheap, but still very expensive, it's just cheaper than the 1300 it cost normally, I do believe that I am supposed to go though, (it's to see a close friend that has had a baby), because I literally bought the ticket just a few hours before this happened, and it was really a miracle that I was able to get it at the price I did]. I'm honestly most nervous about that because I'll be even more scared leaving her with this issue unresolved (I'd be mess with her 100% healthy as it is). So, please pray that every thing can be fixed soon, that we won't have to wait long for the MRI and that if need be we can get into surgery really soon as well (the nice part is that once the surgery is done we'll probably only be in the hospital for two nights, so long as there's no complications, it's nice how quickly kids bounce back). And please pray that we will be able to keep her on a soft/puree diet without any complaints or issues from her end. She needs to be happy with mashed potatoes, grits, oatmeal, and yogurt for an extended period. Please let me know if you have any soft food ideas/recipes. Thanks.
Posted by carriec at 03:21 PM | Comments (0) | TrackBack
Medical Test Marathon
Well the testing marathon starts tomorrow at 8:30am (I so do not do mornings). Maddie will have an upper GI which is a test where they watch her esophagus while she's drinking a thick liquid that has barium in it (it's like x-ray video). She has had this test before, last Nov., it was the one which pretty much diagnosed her heart defect. So I'm not sure what they will be looking for (though it's possible that scar tissue from surgery could have closed back around her esophagus). I think at this point my ped is just looking at everything that could be possibly linked. Maddie will also have another swallow study (they watch her eat with the x-ray video). The swallow study looks at how her foods or liquids react when she swallows, do they go into her trachea, do they almost go in her trachea, is the epiglottis doing it's job, etc. I also think we will have a cardiac MRI (which she's never had) to better visualize her heart and the surrounding structures, this will tell us definitely if she has scar tissue that has reformed her "vascular ring." After this MRI, I will consult with her cardiothoracic surgeon, Dr. Kogon. And, on July 20th I have an appt. with a pediatric ENT (ear, nose, and throat specialist). And, my ped is supposed to be talking with a neurologist to see if there could be something wrong with her brain (I suppose it has to do with her cough/gag reflex not getting the message in time to prevent aspirating). Did I mention I'm taking organic chemistry? =) I've also decided that everyone who watches Maddie needs to be CPR certified (which currently leaves me unfit to care for my child). We may never know why this happens with her, so best thing to do is have everyone who cares for her as prepared as possible in an emergency. My ped did say that the chances of this happening twice to a child is pretty much zero, so hopefully a reason will be found. Even tonight she started to gag on banana... I thought that the problem was with her not chewing properly, but she was discharged from therapy for that (meaning, according to the experts, she chews and eats fine). This apple thing didn't really have anything to do with chewing, it was a reflex thing I think, or linked back to the heart defect. I don't know. As her mother I have slept little trying to figure it out and fearing for the next occurrence. I just want to be a good mom and not let her down. I want to get to the bottom of this and really advocate for my child. At the same time it's so hard to see her go thru all these tests. It's no one's idea of fun. Biggest thing is that this "condition" is life threatening. A big enough piece of food (or food mushed together) could get stuck and totally block her airway. I pray that will never happen, but it's certainly something I have to take very seriously. Well I need to get to bed, sorry for the ramble, I'm trying to process a lot of fears, thoughts, and emotions right now, which is difficult for me because I'm not an emotional person. So thanks for listening...
Posted by carriec at 01:53 AM | Comments (1) | TrackBack
juillet 05, 2005
Apples Don't Belong in Lungs
Hey everyone!
The medical drama continues! (I'm starting to think they need to do a show on us on the Discovery Health Channel). Maddie aspirated some apple into her right lung last night at around six o'clock. Seriously what are the chances? It was the exact same thing that happened on October 5th of last year. This time there wasn't the drama of the helicopter ride, (which was quite nice really because it wasn't nearly as scary or urgent). She had been eating an apple (she was spitting out the peel into our hands but she had become quite attached to the action of holding the apple herself and taking little bites, we were, to our credit, watching her quite closely). What happened was that because of her fondness for the apple, she didn't want to give it up even though the seeds were going to be appearing soon, so I asked Mike to take it away from her because I didn't have the heart. Well, as soon as he did she took that big toddler breath before a big scream and that's when it happened. She apparently still had some apple in her mouth at the moment. She started coughing and gagging like crazy for like 20 minutes, during which time we weren't sure what to do because she was able to cry and breathe somewhat. After the 20 or so minutes she calmed down, started to breathe much better, and toddled off to play. She would still cough some. Well I was about 80% sure she was fine, but I called the doc anyway just to see what she wanted me to do. She sent us to the ER at Children's Healthcare of Atlanta (Scottish Rite). Even there all the nurses said she sounded good so I thought we'd be going home. Well the ER doc said he heard uneven breath sounds and that her chest x-ray didn't look too good either so he called the surgery doc to see what she wanted to do, and she decided because of what we described happened and with the physical findings, that they would need to do surgery to go see if there was anything there, apparently if there is something there and you leave it there it can damage the lung(s) pretty bad. So, we consented and off she went to surgery around midnight. At around 1:00am (we were admitted already and in her room) they brought her up and said they found a little piece of apple with a little bit of peel on it in her right bronchus. I think it was pretty good sized but nothing compared to the piece of chicken from last time (that was occupying 70% of her main airway). So we just got home from the hospital and Maddie is doing really well. She did really well after surgery and had no complications. She has had some IV steroids and she got breathing treatments every 4 hours, which we will now continue at home. I'm going to take her to her ped. tomorrow and see if she thinks she needs some more feeding therapy or if she feels she needs any more studies to perhaps explain this reoccurrence. It could be a fluke, but it is the 3rd time this has happened. We thought the heart surgery and feeding therapy had solved the problem though. She seems to still have decreased oral awareness, which would explain why she lost track of the apple while she started to scream (I mean, kids do all sorts of crazy things with food in their mouths, but it seems most can keep track of it and know to spit it out when the going gets tough).
Maddie right after surgery and FINALLY falling asleep at 3:00am
I got to the gift shop right when they opened so I could get something special for my brave girl.
Feeling better, rocking with my Daddy and watching "A Bugs Life" with my new giraffe.
We're home! Ah, how I've missed the buzz of the nebulizer....Maddie is getting her first breathing treatment at home (this year...).
Lung
Well, we'll keep ya'll updated!!! Please pray for her ity bity lungs to heal well and fast.
Posted by carriec at 05:59 PM | Comments (3) | TrackBack
juillet 03, 2005
Teletubbies (it can happen to anyone).
Hey everyone! Sorry it's been awhile. We've been quite busy and Mike and I were in Providence, RI. last week/weekend. I always come up with great blog topics during the day but then either organic chem. or a toddler catastrophe usually pushes it out of my mind and into the abyss, never to be retrieved again. The following pics I took at Target the other day. There is just something creepy about Teletubbies. And what's creepier is that kids seem automatically drawn to them. Maddie had never even seen one before, and God knows I would never let her watch the show, if it's even still on. Mike and I immediately took action and I tried to document the occasion. (I also found it hilarious that my husband would make such a scene in the kiddo isle at Target).
She's all ready to get as close as she can to grab said teletubbie when...
Mike intervenes and shatters her dream of taking home a cuddly, loveable and seriously creepy Teletubbie. I felt somewhat bad for her, yet I feel I saved her years in therapy.
You know that there are seriously bored people out there when I can take this quiz:
I'm going to try and post again within the next day or two about our trip to Providence and other random things. Oh, and by the way, I got a 100 on my second organic chem. test! It was cool because my prof. tried to joke with me and made me think I did really bad and then watched my reaction when I saw my grade. I'm happy I'm doing well in this class and hope it continues!
Posted by carriec at 04:27 AM | Comments (2) | TrackBack