Life as a Leach

I have lots of fun pictures of recent events on my camera right now!  I just have to help them make their way to my computer, then edit them.  This all takes time, which I am very short on at the present time...between two crazy kids, feeding Abby every meal, doing work for the training I am leading next week, and managing a household from 2 hours away, I don't have lots of time.  Add very spotty internet to the mix and blogging is pretty much not going to happen too often.  Sorry! We had a great 4th of July with our little family of four.  This is actually the first time all four of us have had the opportunity to have some fun together since we've been up here, because Matt is only up here for short amounts of time and most everything is centered around feeding.  I'll save the details for another post, but our holiday included Port Discovery, fireworks, and RMH friends! Unfortunately, we are seeing more and more that Abby is suffering from separation a...

T-5 Days!  Work is winding down and I've put a huge dent in the packing.  I still need to clean the car and we have a busy day on Friday, but I'm getting there.  We move in on Sunday, which will be a crazy, busy day.  Then, Monday will be in-take day where I do a lot of paperwork, answer lots of questions, and go over her medical concerns...and meet with everyone who will be working with Abby and hope that I feel comfortable enough with them to leave her there alone!!  :(  Tuesday, I'll be with her part of the day before leaving her.  Then Wednesday I'll officially hand her over for the entire day (8:30-4)...and I will miss her!! Pardon my last of posting while I'm packing, getting last minute appointments in, cleaning the car, etc. Postings may resume after we are settled at RMH!

Abby is eating a lot more by mouth now.  In fact, she ate the equivalent of a gtube feed (180 calories) TWICE yesterday!!  I was so proud of her.  We've been working really hard at it, and have been striving toward a goal of 2 ounces of food a meal.  (That's 2 ounces of majorly beefed-up, high calorie food!) Our first feeding therapy is on Tuesday, and I am really excited!  I'm hoping that they will cut a feed so that Abby can be hungrier during the day and eat more by mouth.  Of course, I don't want her to lose weight either, but our weekly therapy will be keeping close tabs on her weight.  I think this feeding therapy is a big step in the right direction, because right now Abby eats, either by mouth or by gtube, pretty much all day long.  She's never hungry!  I'm excited to hear what they have to say, and am especially looking forward to Abby going under the care of a GI who specializes in feeding therapy.  He will be the one "in cha...

So, we've been home for several days now and I can't get several faces out of my head.  Their stories just break my heart, and I wish there was something I could do. The first is a little boy who was SO incredibly friendly.  He had a contagious laugh and called everyone Momma when you came to see him...except his real Momma. She didn't even talk to him when she came to pick him up at discharge (and it kind of seemed like that might have been the first time she had seen him since admittance), and he didn't give her the time of day either.  It was like he knew that his caregivers thought more of him than his mother.  I'm well aware that I am only seeing one snapshot of a very big picture, but it hurt my heart to see such a lovable little boy treated so nonchalantly. The other is a little girl Abby's age who has been here since she was released from the NICU.  She has never been home.  Doesn't that just break your heart right there?  She had...

Abby had her first crush while she was at MW.  In fact, it was on one of her roommates.  Yes, the rooms are co-ed up until a certain age.  I'm thinking I need to request an all-female room next time or we will be in some major trouble!! The two of them would "talk" to each other from their sides of the room, wave, and blow kisses.  Abby would head right over to see him when she was out of her crib, and he would laugh and get so excited.  When they went with a few other friends to the playroom, the two of them sat in the cart together and Abby kept trying to hold his hand.  They gave each other lots of hugs too.  It was absolutely hysterical and a little frightening to see her all googly eyed over a boy at such a young age. Sadly, the boyfriend ditched her for discharge...and left during Abby's nap without even so much as a goodbye!  Abby woke up and immediately noticed he was gone.  She was bitter the rest of the day.  Look out, lad...

Sorry for not posting while we were in the hospital.  Turns out, MW does have wifi (thanks Gila!), but it took a day for someone in IT to come approve my laptop, and when Abby went to sleep and I had time to post, I discovered that Blogger is not an "approved" site.  Scandalous! If we're Facebook friends, you already know most of the story.  Here's the condensed version.  :) We get there and it turns out that "they" (still not sure who "they" are) forgot to schedule the sleep study, which is the entire reason we are there.  She's on the waiting list, but we may have to wait until the following Monday to do the study...which means being in the hospital until Monday...which means exposing Abby to unnecessary germs.  Ugh.  Not too happy!  We found out Tuesday afternoon that she would have it that night, which was perfectly fine with me!  We actually ended up getting out a day early.  Woo hoo!  Abby did great the first night off the...

Here's a really quick weaning update: We are officially going in on Monday!!  We've got a whole lot to do between now and then, and we'll actually be staying at RMH on Sunday (we were already volunteering, and we have to be back the next morning anyway!)  I've got a box full of toys packed for Abby to play with in the hospital, and I've started gathering up the medical supplies I need to take with me. We're really excited about this.  It's been a looooooong time coming, and I know Abby is ready!  I may not post too much between now and then because we'll be at Relay tomorrow, furiously packing and cleaning on Saturday, and celebrating Father's Day on Sunday.  My laptop will be going with me to Baltimore, so I'll try to update when I can. Thanks for all of your prayers!  My prayer warriors were working overtime last night, because the insurance company approved our vent weaning a whole lot quicker than anyone thought they would!  Keep it up!...

The answer:   I don't know. The hospital where she is going to do the weaning just  told me today that they will have a bed for her.  I thought all of my worries were over and I could finally say that we were definitely going on Monday. Wrong. Turns out, they didn't put in the pre-authorization request to our insurance company until today.   This process usually takes three days before you get an answer.  Hmmm...today is Wednesday...uh, yeah, that would be FRIDAY afternoon  before I'm going to get an answer about whether or not Abby will be inpatient on MONDAY morning ....with Relay for Life, Father's Day activities, and volunteering at RMH in between. I have no idea why they waited this long when they were contacted a week ago about Abby coming in.  It seems to me that ball could have started rolling quite a bit sooner!! I called my insurance case manager (yep, they have case managers for the "special" policy holders who cost them a lot of m...

Abby had her pulmonology appointment today, and it was full of nothing but good news and praise for how well she is doing!!  Our doctor feels like she is definitely ready to go into MWPH for a few days to be taken off of the vent once and for all!! The way it will work is that she will come in, sleep at MWPH for two days off of the vent while being monitored, then do a sleep study off of the vent on the third day.  The reasoning behind this is that sometimes kids get worn out by the third day and start having issues.  If her sleep study is good, we'll be going home, SANS VENT!!! (Well, we will still have the vent for a while, just in case.  But it will sit in the closet and will not be used!!) Since we are a "voluntary admission," (don't quite get that, since we have to go, but whatever) Abby could get bumped if a more serious case comes up.  That's perfectly understandable.  If everything works out, we'll be going on/around June 18th...as in, a week ...

Sorry I've been delayed in telling you the results of Abby's surgery.  I worked all day Friday and spent Friday night cleaning up after being away from the house for two days!  So, here are the results: *  The airway looks good, and it is growing....sloooooowly.  It's just really little.  But, there was no granuloma or scar tissue to take out, so that is good news. *  The right ear was draining again (after just a few days off of drops), so he took her right tube out and cultured the drainage.  Since something is obviously wrong, he is hoping to figure out what the infection is and treat it once and for all.  The left tube still looked good, so he left it.  While not having a tube could affect her hearing in her right ear, we're hoping that she will be able to compensate with her left until we can give the right some time to heal. *  Dr. T. manually pulled her jaw forward (Ouch!  Glad she was under!) and saw that it gave Abby'...

Abby had her pulminology appointment today, and it was decided that she is ready to be completely weaned off of her ventilator!!!!!!!!!!!!!! WAHOOOOOOOOOOOOOOOOOOOO!!!!!! There are a lot of steps to this process.  First, we will schedule for Abby to be in-patient at MWPH (where she discharged originally) for a few days.  Between now and then, we will be slowly turning down her breath rate (which is currently at 6 breaths per minute--bpm) until she is not receiving any breaths from the vent.  (In case you're wondering, all that is left when she isn't getting breaths is what is called pressure support, which basically gives her lungs a little extra push so that they can inflate a little easier with air.)  Once she's down to zero bpm, she'll be as ready as she can be to go officially "off." Then the fun part starts!  She'll go into MW (this time by car, not be ambulance, and by one of us carrying her, not by stretcher!) and will basically just hang out...

Today wasn't the happiest day at Mount Washington.  I came into Abby's room this morning to discover that she has been put on contact precautions, which basically means that she may have something others can catch.  Sooo, anyone that comes within three feet of her must donn a yellow gown, gloves, and a mask. I was thinking my yellow gown days were over!  Not to mention that I hate that Abby can't feel my hands or see my face when I hold her.  It's just so impersonal!  But, I understand that this is what we have to do in order to keep it from spreading even more. Our other piece of not-so-great news is that we will probably be here at least another month.  That's if everything goes well and there are no set-backs....which probably means more than a month.  We're just really starting to feel the stress of being apart for so long, so I think we're all ready to just be at home again... together. But, we'll do what we have to do to ensure that our gir...

Ah yes, another one of those!  I have been cooped up in my room all day because of the snow, unable to go see Abby because of the slick roads and my uneasiness about driving in the city in the snow.  I have been quite productive today though, which is a plus.  There was lots of researching about nursing care and medical equipment going on!  Lots of phone calls were made, several thank you cards were written, some cleaning was done, and a few forms were completed.  I discovered that I can in no way make snowflakes.  After three botched attempts, I labeled myself a failure and moved on.  I'm good at lots of things, but snowflake creativity is not one of them.  I'm getting to know a few other lovely people who will be here for a while as well.  It's rather sad when so many people come and go and you're still staying.  We've been here for eight weeks.  One of these days, it will be us packing up  our car and turning in our ...

I'm sorry I haven't been around for a while!  Please allow me to explain: I was at the hospital all day with Abby on my birthday and there's no internet access there...not even for the staff!  Archaic?  Why, yes, yes, it is! Then Matt and I went to dinner with our good friends Jenn and Steven for my birthday.  By the time we got home, I was too tired to post. Plus, I had to get a good night's sleep for my first day "back" to work! So, Thursday I went to work.  No, I'm not really back.   We're all just taking it one day at a time and I'm working whenever I feel like I might be able to.  So I worked yesterday, and will work the two days before winter break.  After that, I'm not sure yet!  Nevertheless, it was really nice to be back into some kind of normalcy and I have definitely missed my kids! (And yes, we did work--hard--on rise and fall climax maps and analyzing characters!) I picked Caleb up and we high-tailed it back up ...

That what all of the nurses say I have.  A Healthy Fear. They tell me that they're glad I'm nervous because they'd be worried if I acted like all of this is no big deal. I don't see it as a healthy fear.  I'm TERRIFIED! The realization that I will very soon--not really very soon, but very soon in comparison to a lifetime--be the primary caregiver for a vent-dependendent child with a tracheostomy and a gastrostomy tube hit me really hard this weekend.  Don't get me wrong.  Matt has been wonderful.  He has done a great job of learning everything and practicing whenever he is here.  I know he'll be wonderful with Abby's care when he is home. But we all know that his job takes him away a lot, and that leaves me.  As the primary caregiver. For a vent-dependent child. With a tracheostomy and a gastrostomy tube. Oh and not to mention being the mother of a spunky nearly four-year-old little boy!! Like I said, terrifying. Yes, I know mo...

On Friday, Caleb met with Ms. Megan, the Child Life Specialist who works with Abby.  Our goals for their session were for Caleb to be introduced to some of the medical equipment Abby has, to get Caleb to open up about his feelings about Abby's trach, and to allow Abby and Caleb to "play" together!  It was awesome!  Megan is wonderful at allowing Caleb to explore at his own pace.  He naturally wanted to check out all of the toys in the room and pull everything off of the shelves.  Slowly, Megan introduced the idea of playing doctor.  She had a little doll with a trach and a g-tube.  Caleb was allowed to "feed" the doll through the tube just like we would with Abby.  He loved sucking the water up with the syringe!  Megan even pulled out the Kangaroo Bag that we will be going home with, since the way she is being fed now is slightly different than she will be at home.  Megan also had all of the actual medical supplies we use with Abby:...

Matt and I have learned SO much since we've been at Mount Washington!  In the last week, we've demonstrated proficiency (it's like medical MSAs!) in trach tie changes, g-tube cleaning, feeding and disconnecting, giving medicines, non-nutritive oral stimulation, and range of motion exercises.  I've learned a lot about the ventilator, but still don't really understand it.  We've also watched a trach change while the respiratory therapist talked us through it step-by-step, so the next one will be up to us!  (Of course, the respiratory therapist will be close by giving lots of directions!)  We each have to do three trach changes before we are considered proficient on those because they are the most intense. So since we've learned so much, why do I feel so overwhelmed?!?  I kind of lost it today when I thought about how I would ever be able to do all of this by myself.   We'll start out with 24 hour nursing care, but that will quickly be tapered to where ...

 Now that Abby has a much bigger bed with lots more room, it's a little easier to take pictures of her.  I took the opportunity to do a bit of a photo shoot the other day.  It just so happened that her flowered blanket matched perfectly  with the striped blanket underneath of her!  My Aunt Sue (who is not really my aunt, but my cousin by marriage...since they are my parents' age, we always called them aunt and uncle...I was extremely confused when I learned who they really were at age 8!) made Abby a very cute quilt.  I think she liked it too! Doesn't she look like she is plotting something here?!  Seriously, this girl is a royal mess!   I am going to have my hands full in a few years when Caleb and Abby can work together...

I swear I wrote this post once before, but it has disappeared.  It's a mystery... Yesterday, Abby was transported to Mount Washington Pediatric Hospital.  The transport bed was soooo tiny and I felt a little clausterphobic just looking at it!  We said goodbye to our friends at UMMC and were off! We drove to the hospital and arrived right after the transport team did.  Upon arrival, we were ushered in to our first family meeting with Abby's doctor, our social worker, and our case manager.  They went over tons of information and asked lots of questions.  It was good to share what we knew and have them give feedback in a few areas (read:  insurance!) WE LOVE OUR DOCTOR!!  Dr. A. is extremely knowledgeable and has a great sense of humor.  That's just not a combination that we've found in too many of our doctors so far, so it's kind of refreshing.  She is very personable and has stopped by just to visit Abby several times ...

Do any of my SLES friends picture little school buses on popsicle sticks rolling down a little construction paper road?  No, just me?  Okay, nevermind. I've got SLES on the brain after I visited there for a little while today.  It was awesome to visit with my kids (hellllllllooooooo to those of you who are reading this, now that I know you have the site!) and chat with the staff for a while.  It almost made me feel somewhat normal.  Almost. Anyway, I digress. Tomorrow, we are officially transferring to Mount Washington Pediatric Hospital.  There, we will be trained on trach care, how to use the vent, and trach CPR.  They also will help us set up private duty nursing care for Abby.  In addition, it will be a place where Abby can grow and get regulated on her CPAP settings.  It's one step closer to home!!!! This probably won't be a quick stop before our final destination, however.  We're still planning to be at RM...