Sunday, June 19, 2011

Medical Update

I haven't blogged too much recently about how Abby is doing medically, because there's so much to share about her cuteness!!  So here's an update!

*  Abby has developed some kind of an infection at her stoma (trach site).  It's very red and oozy, and it was bleeding yesterday.  They did a culture and a swab of it yesterday, so hopefully they can figure out what it is.  She's on a broad-range antibiotic now to try to kill whatever it is, but they may switch it when they pinpoint the bacteria.  Thankfully, it doesn't really seem to be affecting her breathing.  I hope we can keep it that way!!  Now that she's been on the antibiotic for 24 hours, it only seems to bother her when we actually touch the area.  Other than that, she's been pretty happy today.

*  She went to the opthomologist last Monday and got a good report!  Her optic nerves still seem to be within the average range and they noted how well she is tracking.  We will continue to go back every 6 months for a follow-up.

*  Abby weighed in at 14 lbs 12 oz yesterday at the doctor's office.  She's only gained 7 oz this month, but they said babies often slow down between 6-9 months.  They seemed okay with that weight, as long as she wasn't losing any.  Plus, GI also cut down her fortifier last month, so she's not getting as many calories now. 

*  We got a notice in the mail from the Department of Health and Mental Hygiene stating that although Abby passed her hearing test, she is still labeled "at risk" for late-onset hearing loss.  We'll be getting her checked at one year old by an audiologist, but this isn't a concern for us.  The girl can identify us by the noises we make (clucking, whistles, etc.).  She knows her name and looks around when she hears Caleb's voice.  There's no question that she can hear!

*  These next few weeks will be chocked full of appointments.  This Wednesday is the big pulminology appointment where we will hopefully get a date set for the vent weaning.  Thursday we go to GI (not as big of a deal, since she's seen once a month by them).  Then next Wednesday Abby will be scanned and measured for a helmet to correct the shape of her head.  Yes, in case you have a very good memory, she's had this done twice before!  The first time, the company wouldn't give her a helmet because they don't work with trached babies (but didn't think to tell us that before they scanned her...).  The second time, we got her fitted and everything was great until we found out that she had to be preapproved by Medicaid.  Since this means they would be paying for it (!!!), we didn't want to do anything to mess it up!  Unfortunately, the scans are only good for 2 weeks because her head will grow.  Sooooooo...we're on to scan #3!  (but who's counting?)  We already have the fitting date scheduled and have received the preapproval, so hopefully this will be the last hurdle.  It's been a bit of a difficult process, but we are thankful we've found a company who will take Abby...and even more thankful that Medicaid will pay for it!!  The helmet is extremely expensive, and private insurance won't pay for it.  Have I mentioned recently how grateful I am that Abby is on Model Waiver?!?!

So sorry...I got off on a bit of a tangent there, now didn't I?!  :) 

*  We're really hoping for good news at this pulminary appointment.  We have a very small window as to when she can be weaned from the vent.  It needs to be this summer because she has surgery for her cleft palate in September (they don't want her unstable before the surgery), and they won't do it during cold and flu season.  Basically, if it's not done this summer, we'll have to wait another year.  I'm not going to rush the doctors into something that Abby's not ready for, but I'm really hoping our pulminologist thinks she's ready!  Weaning would take place in good ole MWPH over the course of about a week.  The goal is total weaning, but at least during the daytime.  Please pray for that...this is one hospital stay that I will gladly do!!  (Plus, I'm kinda excited to say hello to our old friends at MWPH!) :)

Whew, I think that's the end of the medical updates.  We're hoping for good news at the pulminary appointment and are trying our hardest to keep Abby out of the hospital with this infection.  So far, so good!

1 comment:

Caitlin Lanier said...

Hi Julie! It's Caitlin, nurse from MWPH! I've been following you guys on here since Miss Abby was discharged, and she looks AMAZING!! I was excited to read that she might start weaning off her vent ( and even though I don't want to see her in the hospital, I would be excited to see her back at the Mount!). Your family is so great and you are all an inspiration!!! Good luck and best wishes!