Life as a Leach

Over the last few days, we said goodbye to our three nurses who have been with us for quite some time and love Abby.  It was bittersweet, because while we are thrilled to be on our own again, we will miss these sweet women.   Life without nursing has been wonderful so far, and we haven't had any problems with Abby's nighttime routines so far.  We rotate every other night with getting up with her feed, and it's been fine.  Caleb is loving the family time.  I didn't realize how much that affected him. I took my first trip to Baltimore with Abby solo yesterday, and she did pretty well.  I left very early so that I could make a few stops along the way (I'm on the hunt for a suit for Caleb!), which she definitely needed.  I did have to pull over once on 97 on the way back because Abby decided that she didn't want her shoes on, couldn't get them off herself, and just couldn't get past it.  But, I never felt an urge to pop in one of the "just in c...

I will miss our nurses.  They all love Abby and have become part of our lives.  I'm sure we will keep in touch with them.  I'm glad we have nurses that we will actually miss, because there was a time when nothing about nursing was a positive experience.  Now, overall, we are very thankful for the extra help we have received with Abby. But there are also a few things I will NOT miss!  Like... *  ...keeping paper towels in the bathroom instead of a hand towel because the nurses can't use them.  It creates SO much trash and gets expensive! *  ...cleaning up after people who are not part of my family.  The nurses we have now are great about this, but others have not  been neat.  There have been many spills on my carpet, marks on my walls, crumbs down in my chair cushion, trash left on my floor, dirty dishes they used in my sink...I have enough messes to clean up as it is! *  ...having to get a doctor's order to give my chi...

Wow, I haven't blogged in a week.  It's weird to not do something when you are so used to doing it every day.  For a long time, blogging was therapeutic for me.  But I never want blogging to become a chore or get in the way of my role as a teacher, wife, and mom. So now that our lives are changing once again and we are about to be 100% completely in charge of Abby's care for the first time ever (woo hoo!!), I won't be staying up until 11:00 waiting for the nurse with several hours of blogging time on my hands.  That means that blogging might be a little less frequent, but that's a good thing!  :)  We'll be spending more time doing "normal" family things this fall, like going to pumpkin patches, celebrating birthdays, and visiting museums.  Oh yeah, and Abby will be going to Baltimore twice a week for the entire month of October.  Gotta love those annual appointments!  Oy. What's been going on during my blogging hiatus?  Wel...

Your nurse that you love sees that you are on Facebook late at night, so you come down for a cup of coffee. You tell your nurse that you don't need a doctor's order to have a well-deserved moment with your child. You have been marked as the parent who hovers...aka, the parent who holds her baby and loves her! You finally get the most amazing team of nurses...and then one of them gets pregnant and the other one gets an amazing hospital job--and you are truly happy for them. You can identify the tiredness that comes over everyone at 4 a.m. and understand their Red Bulls and candy they bring nightly--as well as occasionally finding them with their eyes closed, holding your baby's hand. The nurse has to remind the doctor and other nurses that you are the  mother , and not their  daughter. You are told, "Oh, no, it's just allergies!" and lo and behold, two days later, you, your child, and your husband now have the so-called  allergies  and that nurse h...

You take another adult to every doctors' appointment your child has and are frequently asked if said adult is your husband's mother because you look nothing alike. You've ever been asked if the other adult with you at a doctor's appointment is your child's "Other Mom" because she's not wearing a nursing uniform. You no longer have a parking spot in your own driveway and have to play musical cars with someone you have told 100 times where to park so that you can leave for the job you're not allowed to be ten minutes late to everyday! You spend your so called free time watching nanny cams making sure the well-paid adult is sleeping or doing something that you don't approve of. You had to get it written in the plan of care for the night nurse NOT to wake your child up to change her diaper. You make a checklist of things to be done and have the RN sign off on it like a reward chart for a 2 year old. You hide your favorite sodas because...

When you end a phone conversation at 3 p.m., 11 p.m., or 7 a.m. so that a nurse can sign out. You have given your husband a dress code so that he d oesn't walk around the house in his underwear. Your non-trached kid thinks he has a playmate who comes to visit every day. You have to tell the nurse you want to be the one to calm down your crying child. You have an urge to walk around your house naked, just because you can't. Your typical four year old tells you she wishes you had an office she could call when you are not nice! You have ever had someone try to tell you how to bathe your baby. You wonder if other professions allow you to be 20 minutes late on a regular basis without penalty. Your five year old blames messes and lost items on the nurse. Your nurse makes more of a mess than your two children. You groan when the caller ID says it is your nursing agency. Your kid uses the oximeter as a "Pavlovian" call, bending her toe to make it go off...

For those of you who have never experience home nursing, it is...interesting.  It could be wonderful....or horrific, depending on the nursing staff.  I've personally had both experiences, and am now (thankfully!!) experiencing the wonderful side of home care.  When you have nurses you can trust, they can be a lot of help and you can reduce your stress a bit.  But it is definitely interesting. I wanted to give my readers a glimpse into the lives of families with home nursing.  I polled my online trach group, hoping to get a few funny comments about life with home nursing.  I was figuring I'd have about 15 or 20.  The result was so much more than I hoped for!!  Just 2 hours after I posted, I had 27 comments, and it grew to 77 just in the first night--many of them writing multiple ideas.  They have just kept on coming from there, and some of them cracked me up! Because of the overwhelming response, I've separated this into a couple of differ...

 I will admit it:  I love Pinterest.  I purposefully don't go on there very often because I know that three hours would go by before I knew it.  But I have found that purposeful searching (and then getting the heck outta there!) has proven pretty awesome!   A quick search for Easter gift ideas led me to Peeps S'mores!  We created these little baskets for Caleb's teachers, the nurses, and Abby's therapists. I made little tags for each basket and printed off directions for making the Peeps S'mores. It's nothing fancy, but we like to say thanks to some of our favorite Peeps!  :)

*  Abby's first birthday and all it stands for *  September 11th and the harsh memories it will bring back for so many people on this 10th anniversary *  The opportunities we've been given recently to share publically Abby's story and the miracles performed in her life (more on that to come!) *  Sadness for friends who have had major damage to their houses as a result of the hurricane and flooding *  The fact that this is Caleb's last year "home" before he starts kindergarten.  UGH! *  Nursing drama, as usual... *  How much our lives have changed in the last year There was a time when the most important thing on my brain was the outfit I would wear to the school dance....

A few days ago, we gave the nurses a little thank you gift from Abby.  We try to show our appreciation every now and then with something small, and I hadn't done anything in a few months.  The Lock & Lock water bottles that I purchased from the Christmas in July sale were perfect!  I put two flavored water packets inside each one and stamped a quick little gift tag for each.  It made for a nice little gift!  (BTW:  this kind of a thing would be a great and inexpensive teacher gift...coming from a teacher who has a whole lot of coffee mugs...)  :)

We don't have nursing tonight...but Abby still needs 24 hour care...and an alert and aware caregiver...which means that we will be taking turns staying up tonight. To make things just a little bit more difficult, Caleb has a dentist appointment at 9:30 on Monday morning.  If you see me at work on Monday afternoon, please ignore the deep blue circles under my eyes.  I'm sure it's just eyeshadow.

We took Abby back to JHH last night because she had a fever, bloody trach secretions, lots of secretions in her nose and mouth, and had been exposed to the flu.  I called to talk to a Pediatric Pulminologist after we got the bloody secretions.  Thankfully, I spoke to one who had seen Abby as an inpatient and she definitely wanted us to bring her in.  Unfortunately, they had changed shifts by the time we got there and we saw someone who'd never seen Abby.  They sent us home thinking we were paranoid, overreacting parents.  I'm hoping they are right. Nothing has changed, but nothing has gotten worse either.  I'm not overly confident in the trach culture that was done, so I may get another one done at the pediatrician's office if things don't improve over the next few days.  (Obviously, it's right back to JHH we go if things worsen!)  We got home about 1:30 a.m. last night and went to bed around 2:30, only to be up bright and early for work ...

Remember that if you would like to receive email updates of blog posts, all you need to do is send me an email at juliebleach@yahoo.com .  I will add you to my blog group and you'll start getting the posts emailed to you.  Just "following" my blog on the right hand side of the screen won't get you the updates. Also, I apologize now for the lack of posting that will be going on this weekend.  Today, we have meetings and more nursing interviews.  Tomorrow is Caleb's birthday party, Sunday is Caleb's actual birthday, and Monday my supply company will be bringing our first delivery.  I'll be home for the better part of the weekend, in a land where there is no internet.  *gasp* Yes, I am remedying this as quickly as possible.  If we are never going to leave the house again, I need to have internet so that I can order the essentials...like grape soda and crab chips. I have tons of pictures that need to be loaded, edited, and posted, but no time to do...

We are with Maxim Healthcare, and so far we've been pleased with the agency.  I really like the person in charge of our case there.  She gets things done, and that makes me happy.  Yesterday, we had our first two nursing interviews.  We have four more scheduled over the next week.  I asked them thirty-two a few questions and gave them a list of our expectations.  One was 10 minutes early and one was 25 minutes late.  One has already been flagged as a nurse we definitely want...and one will not be a good fit for our family.  'Nuff said.  The question of the hour is how much nursing we'll actually get.  Well, we probably won't know until the day before discharge.  The uncertainty of this drives the planner in me absolutely bonkers I am handling the uncertainty quite well!  All I know is that we will go home with 24 hours of nursing care for the first couple of days...after that, it's all up in the air.  You hear tha...

I took a CPR class with a group of people who were less than serious about learning it.  As I was watching the others practice on the doll one by one, I came to the realization that I could very well have to do CPR on my child.  And then I started crying. I did manage to keep it together so that no one noticed--hopefully--but CPR is one of those things you learn but never think you'll actually use.  Or, if you do, it's on a stranger in the street or as a lifeguard at the pool. Not on your own child. So I went last for my demonstration so that I could be the only one there (you could leave after you demonstrated on the doll) and asked lots of questions.  I really wanted to make sure that I understood this.  Sure, I was certified back in the day at Wabanna, but that was a long time ago. And this is my child. There are also some things you need to do differently with a baby that has a trach, so it was good to have some one-on-one time with that....

Two fabulous things happened today.  I must share!! First, and absolutely the most important: We have a home date!!!! Now, I know that this is subject to change and I shouldn't get too excited about it...but it is incredibly encouraging to me to actually have a date.   It's no longer "Mid January."  It's now January 18th!!! There's a lot that has to happen between now and then, but we're getting there!!  The next two weeks (TWO WEEKS!!!!) will be a whirlwind.  I apologize now if my posts become a little less frequent. Also, Abby got to test out her new speaking valve today!  That was the exciting happening I alluded to yesterday.  It's kind of difficult because she has to work a whole lot harder with it, so we're starting with very short trials.  However, Abby's 45 seconds pleasantly surprised the speech-language pathologist who was a bit skeptical of her ability to use it at all given her weak lungs.  She commented many times o...

Thank you, thank you, thank you to all of you who faithfully pray for us.  It is so wonderful to know that so many people love and support us.  As our home date nears, we have some specific prayer requests for you. *  Abby will continue to be stable enough to go home. *  Our nursing agency will find qualified, capable nurses that are willing to travel to our area.  This has been a real problem.  So many times, nurses say they travel to our county only find out that we live at the bottom (another 40 minutes) and say no.  I'll be so frustrated if the reason Abby has to stay in the hospital longer is because they can't get the necessary staffing.  *  The transition home will be smooth for all of us and that we will be able to thoroughly enjoy having Abby home with us. *  We will all adjust well to strangers being in our home and that we will all have a common goal of providing Abby with top-notch care.  God apparent...