Life as a Leach

So Abs found out from the ophthalmologist today that she needs to start patching her eye for two hours a day every day.  Her left eye that turns in is getting worse, and she is basically unable to see much of anything out of that eye.  Her vision measured 20/100 in the left eye WITH her glasses on. No big deal.  We've dealt with many worse things! But it is definitely going to take a bit of convincing to get Abby to buy into the whole thing. The alternative is putting drops in her eye that make her vision blurry for the entire day, which I think sounds a lot worse.  I thought I'd be able to find cute patches that would entice her, but the girly disposable patches online aren't all I ended up buying a few different brands of tan patches at the drug store to test them out.  I have a feeling that the adhesive will do a number on her skin like it usually does, so I started looking for some alternatives.  I found some cute ones that cover up the entire len...

You know how when you really don't want to face something (like writing a paper, or doing laundry, or having an uncomfortable conversation), you do everything but  that to try to avoid it? Yeah. I've pretty much only been posting surface-level topics...pictures, reviews of books, etc.  That's because I don't want to blog about what's really on my mind.  Avoiding writing about it helps me pretend it's not happening. (Truth:  I just totally avoided writing this post for another hour by talking on the phone....) Ok.  Time to just spill it. Abby's most likely going to get another g-tube.  We will find out for sure next week when we meet with the feeding team, but our feeding therapist is recommending a g-tube. There are a couple of reasons for this.  First, the jaw surgery is going to make it next to impossible for her to eat by mouth for a while.  We know she's going to have to have an NG tube (through her nose) for a while no matter what...

If you haven't heard (because you live under a rock!), Dnterovirus D68 is closing in.  While there haven't been confirmed cases in Maryland yet, I know it's just a matter of time.  This message from the health department confirmed it! http://www.calvertlive.com/health-department-warns-of-enteroviruses/ Please, PLEASE wash your hands often! EVD68 is hand sanitizer resistant, which means you HAVE to wash your hands to keep it from spreading.  And for the love of all things holy, DO NOT send your kid to school sick!! This virus turns bad quickly and it spreads rapidly.  I know that childcare is often an issue and who wants to take a day off, but this is serious here.  Be careful. Read this too.  Maybe it will help you understand my position.  http://allthathathlife.wordpress.com/2014/09/16/just-a-little-cold/ NO, I'm not overreacting.  What could be s bad cold for your child could be deadly for mine.  It's my reality.

Who knew that these ears were going to start such a whirlwind of phone calls?!? I called our ENT's office this morning to let him know about the ear tubes and ask if there would be any way to fix them during next week's g-tube revision.  In his wonderful  way, Dr. T. called me back himself in less than an hour (seriously, I love this doctor!  He is only second to Dr. S., her pediatrician!).  We talked a lot about Abby's rib surgery and recovery, and he was concerned about her need for post-operative oxygen, since she had never needed it before.  His feeling was that she needed more time to recover before putting her under again.  He emailed her surgeon and I gave the office a call as well. Again, within an hour, a third surgeon joined in on the conversation.  This time, it was the jaw surgeon who works closely with Dr. T.  Dr. T. had called him because he was wondering if the oxygen requirement proved that Abby needed the jaw surgery sooner ra...

I never want blogging to become a chore.  When I don't have time or don't feel like writing, I don't.  That's why I'm not a money-making blogger; I can't commit to blogging that much.  I like to write and it's therapeutic for me, but it is also put to the side when other things take precedence. That being said, I've been short on time the last few weeks during our travels to and from Philadelphia and I have lots of medical stuff to share! *  Abby had a dynamic MRI done on May 29th.  Our concern wasn't the MRI itself, but the intubation that needed to happen.  She was successfully intubated on the first try in just 15 minutes!!  We had anesthesiologists from the "Difficult Airway Team" (that in itself makes me happy!!) who were excellent.  They took detailed notes of what they did and what they saw the whole way down, and I couldn't have been more pleased.  Abby came out of anesthesia just fine too.  Once she woke up, she was in a ...

Since Abby's tubes were put in her ears January 15th, she has continued to have a lot of ear issues.  Her ears began bleeding again well after they had stopped post-op, so our ENT put her back on Ciprodex.  (If you are looking for a good stock purchase, Ciprodex might be it.  I think Abby is responsible for most of its financial success.)  The nurse practitioner said to call if she wasn't better in a week, and she would see her when we were coming up for Abby's feeding evaluation on Thursday. Welp, they were no better, despite pouring Ciprodex into her ears twice a day.  In fact, her right one was definitely worse.  So I called ENT on Wednesday to make an appointment for Thursday afternoon.  Dr. T. wouldn't be able to see her because he was in surgery all day, but the NP could.  We went straight there from the feeding clinic at MWPH (a 10 minute drive with an extra 20 minutes of driving through the parking garage trying to find a space!!!) ...

Abby has surgery tomorrow to get her third set of tubes put in her ears.  Here's hoping this set stays a little longer and helps with the fluid so that her hearing will improve.  Third time's the charm, right?! Side note:  the hearing loss is definitely becoming more noticeable, and it is affecting her speech more now too.  She's starting to lose some sounds, we think.  :(  So hopefully having clear ears will help her to be able to hear everyone better and mimic the correct speech sounds.   While ear tubes are very simple to put in and make for a very easy surgery, any time under anesthesia is a big risk for Abby.  This will be the first time that she will be put under without having a trach.  What's the big deal?  Well, trach = stable airway.  No trach = unstable airway.  Abby can't be intubated the regular way that most people can.  It takes a specially-trained anesthesilogist to do a fiberoptic nasal intubation. ...

Have you ever felt awkward and inadequate when trying to give comfort to a person facing a major medical illness?  I used to stumble over my words or just give a feeble, "I'm sorry."  I may have even been guilty of saying, "This is all part of God's plan" a time or two. Now being the mother of a daughter with chronic health issues, and having been the recipient of lots of well-meaning cliches, I understand that people just want to show their support.  They may not quite know how, but they want to let you know that they love you and are pulling for you.  I appreciate that! I did want to share a few phrases that, in my opinion, are not very helpful when you are in the midst of a medical crisis.  (Note:  if you're reading this and think you might have said one of these to me, please know that I was not offended and appreciated your support!!)   :)  This is just something that I have talked with other special needs parents about and read about...

Matt and I decided to pursue something that we have been thinking about for a while.  It's a big, big step, but I think it's needed. As you know, Abby has a rib-gap anomaly that has caused her ribs to be in pieces.  The concern is that the ribs won't expand properly to allow the lungs to grow.  Until now, we have been very occasionally followed by a thoracic specialist at JHH.  I felt comfortable with him, but he has now taken a position at a hospital in Florida.  Sadness.  Now, our other doctors can't tell us who we should see instead.  They've basically said to just wait and see if she starts to have respiratory issues and deal with the ribs if she does. That didn't sit too well with us, so we made the decision to go visit Dr. Campbell at Children's Hospital of Philadelphia (CHOP).  Dr. Campbell is the creator of the VEPTR rib , and he is one of the only people who has actually seen what CCMS ribs look like!  Here is a  video ...

Today is Genetics Day.  It was postponed in February because of bad weather, and this was the next available date.  I was in no hurry.  :) My feelings about genetics haven't changed.  I still feel strongly that Abby shouldn't be subjected to pictures of her "imperfections" or that we should discuss these perceived imperfections in front of her. I also refuse to allow them to draw her blood (something that seems to be common) unless they can give me a very specific reason.  The child has had SO much genetic testing in her young life!  Unless you've got something new to test for, you're not drawing her blood.  She's had enough. I'm hoping that this new geneticist is more sensitive so that my concerns aren't even warranted, but I'm skeptical.  And I'm really weary of what she can actually offer me.  We shall see!

...we brought our Abby Joy home for the very first time at just shy of three months old.  What an emotional day that was!! It started out frustrating because bad weather (that wasn't very bad at all!) was going to keep the nursing agency representative from being able to do our intake.  The hospital wouldn't let Abby go home without nursing care, so this would have made us stay at least another day.  Several phone calls from a very angry husband later, she agreed that she would "try" to get down there.  (The weather was fine!!  Kids didn't even go in late!!) Once we realized that this was actually happening, it became surreal.  We hugged and cried tears of joy because we were finally doing something that most of the doctors didn't think would happen.  As we walked out of the hospital, I almost felt like we were stealing her and someone was going to take us down the moment we stepped out of the door! Thankfulness overtook us as we pulled out of th...

We finish disinfecting the house from one sick kid (We never did figure out what it was, by the way!  All of the tests came back clear, so we're going with Salmonella) and then had to do it again for another. Caleb got an unwanted birthday present--Scarlet Fever.  He started feeling badly at dinner on his birthday.  I knew it couldn't be good when he didn't even eat his special birthday dessert!  By the time we got home, the poor kid had a fever and lots of pitiful tears.  He couldn't really tell me what hurt, but we'd already decided that the fever alone would keep him home from school. The next morning, he told me his throat really hurt.  One look into his mouth showed a throat full of red bumps.  Strep!  Matt was already home that day, so he took Caleb to the doctor while I went to a meeting for work.  (I feel the need to mention once again how much I love our pediatrician's office!  "Our" nurse saw that Caleb was sick on Facebook...

As luck would have it, Abby seems to have gotten an upper respiratory infection that didn't show itself until yesterday evening.  She started out with lots of drainage from her nose, but by bedtime, she was absolutely miserable.  She tossed and turned most of the night, sleeping only for short amounts of time and crying whenever she was awake.  Thankfully, her oxygen levels stayed perfect, so there was no reason to make any calls last night. Abby seemed even more miserable this morning and had a decent fever. I called our amazing pediatrician, who took the time on his day off to meet us at the office so that he could see her.  He really goes above and beyond for us!  After checking Abs out, he felt like she probably had a virus that lots of kids have been getting recently.  But since she just had her trach removed, he went ahead and put her on an antibiotic to kill whatever might be floating around in there.  Thank you, Dr. S!  You are so awesom...

Our ENT called this morning, and Abby is officially going to get her trach out!!!!!!!!!  What's even better is that she is scheduled for SEPTEMBER 6TH...just 2 1/2 weeks away!!!!!!!!! I quickly called Matt with the news, and we shared some tears and blubbering.  Then I listened to "Our God" three or four times in a row and blubbered a little more.  Tonight, we both blubbered through singing "Our God" at Caleb and Abby's bedtime. I know we say it all of the time, but we are so thankful for all of the miracles that God has performed in Abby's life.  What an amazing story we have to tell, and what an easy  way to share about Christ! Our God is greater, our God is stronger, God You are higher than any other.  Our God is healer, awesome in power.  Our God!  Our God! And if our God is for us, then who could ever stop us?

They're all good, too!!  :) Warning:  This is a VERY long post with no pictures.   Sorry :*( 1.  Abby went to ENT on Tuesday for a follow-up now that she has been off of the vent for a month.  He put a cap on her trach so that she would be forced to breathe out of her mouth and nose.  We're building up tolerance, but she does great with it and doesn't seem to notice any changes at all.  Right now, we're following guidelines to cap her 3x a day and increase by 15 minutes each day.  By the time we come back from vacation, Abby should be capped pretty much all day!!!  I will call while we're on vacation to schedule a sleep study.  If that looks grrrrrreat, our ENT will check her airway under anesthesia one more time, admit her to the PICU, then take the trach out!!!  She'll stay inpatient for a few days under observation, but for awesome reasons!  If the sleep study doesn't look so wonderful, then we will move forward with...

Today was an emotional day, and I have been a bit "leaky."  But it's all happy leaking! Our speech therapist saw Abby for the first time in a month, and she was very excited about Abby's progress.  When I asked what we needed to focus on now, she said nothing.   She said Abby is doing just what a child her age should be doing, and she is a typically developing talker! So what do you do when a professional speech therapist with whom you've been working closely for the last 18 months   tells you that she no longer has any concerns about your child???? I cried.   Very happy tears!!! Then I asked in a worried tone, "You're not going to dismiss her, are you???"  The answer is NO.  Yay!  Abby has a diagnosed medical condition that puts her at risk for delays, so she will remain in early intervention until age 3.  We'll have to see what the IEP process holds for us after that.  For now, I'm very happy to stay under the very knowledgea...

Next Thursday, the 31st, Abby will be having a bronchoscopy.  This is where the ENT takes a look down her airway to see how it's growing and look for any scar tissue, granulation, etc.  We're hoping for good results. In other, but related, news, Abby had another ear infection last week.  Ugh.  This is #8 since tubes, if you're counting.  Thankfully, we were already going to ENT the very next day after her ears started bleeding, and he confirmed the double infection.  NOTE:  this is after TWO MONTHS of heavy-duty ear drops, that we had just finished 4 days before.  The ENT swore that these ear drops would kill everything once and for all.  Hmmm... So, back on Ciprodex is Abby.  She is so tired of ear drops.  These drops will carry us until the bronchoscopy, where the ENT will also be taking a look in her ears.  He suspects that the tubes are misplaced or that there is granulation around them.  Unless the tubes look abso...

Today was Abby's big orthopedic appointment.  We realized very quickly that one of the downsides of seeing one of the best orthopedic surgeons in the world is that he is in very high demand!  Dr. S. was called out for an emergency, which certainly wasn't his fault, so we had to wait about an hour and a half before we saw him. What to do, what to do, with an hour and a half of wait time in an empty exam room with no toys because we already had a lot to carry in and we figured it wouldn't be that long?  Well, after exhausting the standard peekaboo-in-the-mirror-of-the-exam-room game that we usually play, we let Abby stand in the large windowsill and people-watch...her favorite!  They'd told us to take her pants off for the exam though (before we realized we'd be waiting for so long!), so I'm sure passersby looking up at the 5th floor window got a chuckle out of a half-naked baby banging on the glass with a huge smile on her face!  When that turned into a much mo...

Matt and I would appreciate prayers tomorrow for Abby.  She has a big appointment at orthopedics to see about her hips.  They seem to be causing her some problems, as she has hit a brick wall with the walking.  We seemed closer 2 months ago than we are now. While we're hoping to get to the root of the problem and do whatever need to be done to fix it, we're also feeling a little anxious about what that might mean for Abby.  We really have no idea what our doctor will say, but we feel confident in knowing that he is truly one of the best out there.  We trust him. Please pray for us.  I'm more anxious about this than I have been about an appointment in a long time--probably because this directly affects the walking, which is a sensitive subject for me.  We're hoping that fixing the hips will help Abby to be able to walk easier, even though it may mean delaying the walking a little while longer. I'm trying to keep things in perspective, because I kn...

Those first few terrifying weeks of Abby's life, the doctors told us an awful lot of information.  They told us that Abby's chances of getting out of the NICU were very slim.  They gave us lots of statistics that showed us the odds were stacked against her. They pointed out every little physical imperfection on her body, from her ears, to the bridge of her nose, to her fingers.  They discussed life expectancy, pediatric hospice, and DNR orders.  They told us that she would never sit up, much less walk, but offered assistive technology to make our day-to-day easier.  They were quick to set our expectations straight by informing us that she wouldn't be much more than a vegetable, if she lived . But there was a whole lot the doctors didn't say. They didn't say that Abby is so much more than a statistic.  They didn't describe the look of adoration that would glisten in Abby's eyes as she signed "I love you."  They forgot to menti...