April 2007

April 11, 2007 (evening)
Dad: We made our (second) trip this week to the hospital today. Ashleigh had her clinic visit. The quick stats:
› looking good from a respiratory standpoint
› she gained 10 ounces since being discharged (it's not enough, she actually lost ground on the growth curve)
› she has not grown any in height
› her head's bigger - it's now 42 centimeters (going from memory - I think it was 41 something before)
› she's staying on all the same medications for now
› we will gradually increase her trach collar weans up to 12 hours (as she can tolerate it)
› we're changing the formula part of her feeds (partly to increase calories and partly for age requirements)
› we're going to meet with her gastrostomy surgeon in about two weeks (more on that later)
› we won't meet with her pulmonologist again for two months

I think that's the main stuff though it is a bit late and I am a bit tired. Overall, her pulmonologist and the rest of the team seemed to be fairly pleased, especially in how good she looks. Her not gaining weight was a topic of discussion but it certainly needed to be.

So, yes - I did say second trip this week. We were in the Children's ER Monday night. Fairly long story, but we had some trouble with her gastrostomy button again. The balloon inside her tummy burst again. This time it was not as easy to reinsert. So because of that, we needed to be sure it was actually in her stomach and not misdirected into tissue somewhere in between. It turned out that it was in her stomach. Unfortunately it took forever so little Ashleigh didn't get any food or medicine for about 10 hours. She was a bit cranky, but considering - I thought she did well.

It turns out after talking with a few surgeons that the size button Ashleigh has is not as dependable as the larger sizes. So we're going to see whether or not it makes sense to go to the next higher size. Supposedly, those are more dependable. For now, we have resorted to taping the tube to her stomach. That's not the best thing to do for several reasons, but it will help reduce the movement and pressure and hopefully help keep it in if the balloon bursts again.

She is still working on new teeth. She now has one more molar coming in on her lower right. So that's three molars and an eye tooth on their way in.

Her ear infections don't appear to have cleared up yet. She's still pulling at them fairly often. We're about half way through her dose of antibiotics so hopefully that will work and we can get rid of that nasty stuff. Her nose drainage has slowed down dramatically - so maybe it's starting to work some magic.

We have not had nursing this week. We're supposed to have a nurse tomorrow through Saturday night. Then maybe Monday through Wednesday night. I'll be happy if even some of that works out. We are beat.

Hey, aren't you proud of me though? I mean only one full day between updates! Come on - that's unbelievable these days!

Thank you all for your continued thoughts and prayers for Ashleigh. She really needs to grow so her airways will strengthen. She continues to make progress overall and that's way, way more than an answered prayer!

April 9, 2007 (morning)
Dad: Okay, so remember in the last post about "throw in a few days of teething or other issues"... yeah, well... we kinda hit that wall. It all started innocent enough. We noticed that Ashleigh was starting to get a little fussy with increased secretions first. That was Thursday before last - pretty much after the last post. After some investigation, we realized she was breaking a molar through and what we think is an eye tooth. Her nose started draining soon after. I figured the drainage was probably due to the molar since the maxillary sinus is just above.

As we got through the weekend (that would be weekend before last now), it seemed to be starting to creep down in her chest just a little bit. So we decided it best to have her pediatrician take a look. Her ped confirmed it was primarily (or nearly all) in her upper airway but that she did have slight ear infections. Her ped couldn't say for sure on the left because no one has been able to see down that side - it's very tiny. The ear infections were probably caused by the excessive drainage. I've got a big long list of questions for God and one of them is why he made the little flapper so flimsy in the infant eustachian tube. Seems like if that kept drainage out we could avoid all these infant ear infections. Anyway, I digress.

So we started of first on the cure of this century (antibiotics) to dry up the drainage. (Yes, surprising - but I'm being sarcastic.) It seemed to be working but was causing her stomach to hurt and her bottom to start getting red again. We we're changing diapers often and gooping on the stuff that we used in the hospital before when her bottom got so bad. We called the ped's office back a few days ago and now we're on another antibiotic (this one's called Cefzil). So far it seems like her stomach is better but time will swing the gavel. She's on this one for 10 days.

We also noticed two or three nights ago that she has another molar (on the bottom) coming through. So that could have played a part in the excessive stool-age. I'm thinking that's tooth number twelve.

She's been a little less happy, but I can't seem to understand why. Three painful teeth coming in - one of those an eye tooth, ear infections, medications that make her sick, a bottom on the brink of redness, poop that probably feels like burning jet fuel upon dismissal, a nose that is running and messing with her quality passy sucking time, and parents that are starting to look more and more like cats coming out of the washing machine. I don't know - maybe it will come to me.

Last Tuesday morning I went to give Ashleigh her medicines and noticed a little wet spot on her onesie. Her gastrostomy button has leaked a little before (if she lays on it the wrong way). I peaked inside of her shirt and all seemed well so I started giving her meds to her through the tube. I realized (uhm, pretty quickly) that the "little spot" was getting a "little" bigger, and bigger... and bigger. I unbuttoned her onesie and saw what I feared. Her gastrostomy button was no longer in her stomach. There it lay on her belly. And there the hole was - in her tummy. We were able to get another button in easily so apparently it had not been out too long. If I remember right from our training, that hole can close off in about an hour. It might be two hours. Either way, apparently the stomach starts the healing process pretty darn quick.

We had a nurse one shift since the last update. Enough said there. (Growl.)

We're hanging in there - barely. I hope everyone will keep Ashleigh in their thoughts and prayers that all this stuff will clear up soon and she can get back to the real effort at hand - growing and getting off the vent!