A couple weeks ago we started Mackenzie on Elecare formula instead of her Enfamil AR in hopes of better controling her reflux. A few days after we started the Elecare, Mac caught a "nice" GI bug (vomiting, diahrrea, fever, the works). It started on a Wednesday and ended the same week on Friday. That Saturday morning, Mackenzie wasn't waking up and was very lethargic. At about 10am the nurse mentioned something wasn't right, so I got Mac out of her crib and stood her up on the floor. I could tell right away something was up - she wasn't focusing very well and seemed very out of it. Almost drunk. Within a minute or so of her standing, her eyes rolled back and she collapsed into me. I layed her on the floor to see what was going on and she held her arms in the air, but her eyes were closed and she wasn't responding to any stimulation -- I called her name, patted her stomach, rubbed her side, nada. She eventually snapped out of it and I called the pediatrician who told me to take her to the emergency department. The ED thought she had a slight pneumonia (based on a chest x-ray, which, I must say would be difficult to see a "slight" pneumonia with all the scarring from her lung disease). They gave us an antibiotic and sent us on our merry way.
This past Monday, Mackenzie had similar episodes. She was difficult to arrouse, she couldn't focus her eyes, wasn't responsive, would get very stiff and then collapse, slept for long periods of time, and so on. It started at about 8am and when she wouldn't snap out of it a 2pm, off to the emergency department we went. Mackenzie had a total of about 5seizures (or what we're all assuming to be seizures) that day. They did a CT scan which was fine, blood work was fine, chest xray was fine... so again we go on our merry way with orders to get a neurologist referral and EEG.
I had scheduled appointments Wednesday (today) with pediatric GI, pediatric speech, and the nutritionist at UNC to discuss the recent change to Elecare and the fact that it's made Mac's reflux 100x worse. (She's spitting at least 3x a day now whereas before we had her down to once a week.) With this and many other eating issues, I wanted to approach a nissen dicussion with the hopes of getting it on the books for her next bronch - which would mean in January, Mackenzie would get both a bronch and a nissen fundoplication. I described to GI everything that had been going on and she was immediately redflagged by the seizures.
GI calls the pulmonologist in and at first there was talk about admitting Mackenzie into the PICU to get an EEG immediately, but after seeing how great she looked they backed out of that idea. It was decided to get a sleep study and EEG done (the best way to get the EEG ASAP without admitting her), which we now have scheduled for tomorrow night. All nissen talk is being put on hold until we can get Mackenzie "cleared" of any neurological problems. If she does have any sort of seizure disorder, then I will recend the plea for a nissen since she'd be more apt to have complications post nissen.
Anywho, the pulmo is questioning whether or not the central apnea we discovered is actually seizures and we're all hoping that it IS seizure activity. If the apneas are caused by seizures, then with good medication we have a better chance of getting Mackenzie off the vent at night and decannulated.
From a GI and reflux stand point, we're keeping Mac on the Elecare a bit longer to see how things even out. We'll be using a farrel bag to vent her stomach during tube feeds and using vanilla flavored Elecare to coax her into eating orally again (something she's refused to do since we switched over). There's also talk of doing an endoscopy to look for any swelling in Mackenzie's esophagus due to relux, which might potentially stop her from eating orally. If there is swelling, then she'll be started on a low dose steroid to combat it. If they decide to do the endoscopy, Mackenzie's bronch will be moved up from January and scheduled whenever the first availability is.
So the next round of appointments are:
Tomorrow: Sleep Study and EEG (check in at 6:30pm at UNC)
Oct 14th: 1st neuro appointment
Nov 4h: meeting with ENT, pulmo, GI, and speech to go over progress and re-evaluate
In the meantime, Mackenzie's case will be brought up before the Airway Committe next Tuesday for any other input and advice on what to do.
Whew. Make sense? LOL
And for those of you who faithfully read every last word and have gotten to this point, here's a photo reward. ;o) They were both taken on Tuesday. I felt awful for Mackenzie's terrible Monday events, so I made sure to make Tuesday extra special by causing toy explosion. Enjoy and wish us luck!
8 comments:
WWWOOOOWWWWW! I'm keeping you in my prayers and hope you get answers. So scary!!! BIG HUG!!!
Oh my goodness! Poor baby girl!!
I never thought I would say this but I guess I am keeping my fingers crossed that it is seizures. I hope that at least you can figure out what is going on so you can start trying to deal with it.
Mac is beautiful. She looks so happy with all her toys.
How scary. Kaden was on elecare for a long time, but now that he is older they put him on peptamin jr. He didn't have too many complications with the formula but he also has the nissen or fundo (which ever you want to call it :) ). Poor Mackenzie. I hope they find something to help whatever is going on.
This may sound really far fetched but while reading this it reminded me of episodes Kaden had when he was much younger. Although there are some differences, like Kaden wasn't as lethargic, he seemed VERY scared and seemed to not be able to breath (which was actually the case). However, Kaden went through periods throughout the day where he would have what we called "episodes." The docs thought for a long time that he was having seizures although every EEG they did came back fine. Right before we went home they decided to do a bronch (so from Dec. 04 - June 05, he went through these episodes a couple of times a day). They had him on a seizure med (tegratol, sp?) this whole time and come to find out it wasn't seizures he was having spasms in his bronchial tubes. Ok, now that I am typing this, didn't Mackenzie go through something like that (maybe it was another baby whose blog I follow, sorry I got a little side tracked).
Ok, before I keep rambling, I guess what I am trying to say is that if her EEG comes back fine, do you think that it is possible that she may be silent aspirating and as they think that maybe her esophagus is inflamed, could her airway become inflamed. I am just thinking that if she has pneumonia she could be aspirating.
I am so sorry if this makes no sense at all...my mind starts going and comes up with lots of different ideas (I have been like this since we had Kaden...I am sure it drives doctors CRAZY). I really, really hope that they can find something out tomorrow. I know how scary it can be. What a good mommy you are. Hang in there and I will keep you guys in my prayers.
Again, I am sorry for all of my silly thoughts. I get to reading your blog and just seem to relate a lot of what Mackenzie has gone through with things Kaden has gone through. Your little girl has a special place in my heart.
Amy
Wow does that little girl look happy surrounded by all those toys lol
Amy - She had a couple bronchospasms when she was a preemie, but none since. She doesn't seem scared or out of breath, and her sats stay great. I've mentioned aspration (and micro-aspiration), but her lungs don't show any signs of it.
it makes sense - very good update - and i read it all too :)
Oh my goodness, that is so much for a sweet little girl and parents.
Hoping for the best outcome possible!
She is just so adorable and her dress is super-cute!
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