Life as a Leach

I feel like we come home from a long hospitalization chomping at the bit to get back into normalcy...so much so, that I feel like I'm going crazy!  You have NO idea how much stuff accumulates after a month away.  It takes forever to put away!  We're still not really done, but at least we can move around the house again! Here's a quick recap of the last few days since we have been home: Wednesday:  We got home around 2:00, furiously unpacked as much as we could, and surprised Caleb at the bus stop at 4:00.  He had absolutely NO idea Abby was coming home (which is why we didn't post anything!), and it was so sweet to see him run to Abby and give her a huge, long hug!  Videos don't post well on here, but you definitely need to check it out on Facebook.  It's pretty sweet! After our happy reunion, Matt headed to church for youth group and we went to a birthday dinner for my mom.  My dad came home from the hospital the same day, so it was a great...

It was a slow weekend here at The Mount.  The playroom was only open for 2 hours each day and there were no other activities available.  I had some toys with me, but not enough to keep Abby occupied for 2 full days!  I've attempted a lot of origami, although I've determined I'm not good at it. Abby likes it anyway! She quickly grew bored of the same old stuff!  When that happens, she tends to make her own fun.  That inevitably involves either a mess or breaking something! Thankfully, my cousin and his son came for a visit yesterday!  Jacob is great with Abby and pretty much did whatever she wanted to do.  Jacob also brought a Frozen paint set, which was a huge hit with Abs! Abby has made friends with the little girl next door.  She has a lot of physical and cognitive challenges with no one to visit her, so I think she really enjoyed playing with Abby.  She pretty much cries all of the time, except when she is playing with us.  We think s...

This was just supposed to be a jaw surgery.  Abby would be intubated for 5 days to let the swelling go down, she would wake up, we would deal with pain, and then everything would be fine.  We would go home with our little girl and her fancy new jaw. PLOT TWIST!   Abby's neurological concerns are still there.  We have worked with OT and PT, as well as consulted with many doctors, and they all feel that inpatient rehab at Kennedy Krieger  is the best placement for her.  Our insurance company has already been trying to say she could get therapy at home, so the doctors are prepared to fight.  All my local friends know that there's nothing comparable to kki anywhere near us!  Neuro came in to do another exam this morning.  While we are seeing some improvements with the spaciness, she is still having a lot of trouble with her arms and trunk control.  She is also still drooling uncontrollably.  Plastics kept telling us it was from the surg...

Abby had lots of appointments today (more than we originally thought, it turns out!)  We were up at 5:30, got Caleb to my parents' house at 6:30, and were at JHH by 8:30.  Early morning! First we saw the anesthesia pre-op center to get her approved for anesthesia.  Sometimes we can go to our pediatrician for pre-op, but JHH wanted to see her because this is a big one that could impact the airway.  It went fine...another opportunity for us to educate people about Abby's interesting anatomy! The nurse practitioner sent us to get blood drawn, which is always fun.  Thankfully, the phlebotomist listened to me when I said that her hands might look great, but they never  actually get blood from them!  She also got heat packs when I requested, which really helps to draw out the vein.  This is the first time ever that blood was drawn on the first try.  Yippee!! Our next appointment was for Abby to get a CT scan.  The tech grabbed the board ...

Today wasn't a whole lot better than yesterday.  Abby is still in a lot of pain whenever she is moved at all.  She's no longer vomiting, so the Zofran is helping.  She's only had 1/2 a pretzel and 4 oz of Apple juice though.  :(.  Basically, she is just lying in the bed with a pained look on her face.  I did get a few traces of a smile today, but she rarely talks and communicates mostly by shaking or nodding her head.  I've caught her crying silently a few times and it breaks my heart.  I wish I could take all of this away!! Abby has developed a fever tonight.  They are pretty sure it's just her body being angry about the surgery, so they gave her Tylenol.  It hasn't worked yet, but hopefully she will cool down soon.  The fever is causing her to breathe very, very fast (80+ breaths per minute!). We have been doing lots of slow breathing practice and blowing bubbles to work on it, but her alarm is pretty much going off nonstop. ...

We report at 6:00 tomorrow morning.  Surgery is at 7:30.  We just left Caleb with my parents and are headed back to the hotel to give Abby a bath and use some antiseptic wipes they gave us at the hospital.  After surgery, Abby will be taken directly to the picu rather than recovery. We will be able to see her as soon as they get her in the room.  It won't be until late afternoon. Thank you for all of the prayers and well wishes.  I will post as often as I can tomorrow!

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...

Remember last week how I said that when we first brought Abby home, I doubted whether I would be able to handle a true emergency?  Well, it didn't take long to face that concern head-on...just one week, as a matter of fact.  Today marks two years since we almost lost Abby. You can read all about what happened in this post .  Turns out, she had RSV.  I'm not going to retell the story, but I will say that the image of Abby lying there, blue, will stick with me forever.  I really thought I was losing my daughter in that moment, and I still tear up when I think about it. During our hospital stay, this situation, and in many other situations we've had with Abby, many well-meaning people quote the old saying that God won't give you anymore than you can handle.   I  used to say it too! But now, after having a front-row seat in Abby's life, I truly believe that God will give you the strength to handle anything that you face. There's a difference there....

I get asked a lot how people should pack for their child's hospital stay.  Apparently, we're pros at it.  Everybody's got to be good at something, I guess... This is by no means the end-all to be-all for hospital how-to's, but these are some thoughts I had based on our vast experience. 1.  Pick out a few of your child's favorite toys about a week ahead of time and stash them away.  When you bring them out at the hospital, it will be a grand reunion!  Plus, she will be so thankful that you didn't take them to the thrift store after all.  :) 2.  Pack a LOT of toys.  This will vary according to age, but we bring an entire suitcase full of toys.  Abby gets bored much quicker when she is confined to a hospital bed, so I just go to my bag of tricks and pull something else out. Toy suggestions for preschoolers:  play dough, mess-free finger paint , stickers, movies on a portable DVD player, coloring books with crayons, Color Wonde...

October 27, 2010 was the last day that my daughter breathed on her own. If we want to get technical, Abby has never breathed unassisted.  She had a trumpet clearing her airway put it immediately after birth and was placed under an oxygen tent until she had her emergency tracheostomy at five days old on October 27th. To relive that difficult day a little...Abby had been really struggling to breathe, and the day before had given us enough of a scare that the emergency response team had been called in.  I felt completely helpless watching the team work on my little girl.  Saturation levels were down in the 30s (out of 100%) and we were constantly repositioning and stimulating Abby to try to improve her breathing.  It was becoming more and more evident that the trumpet wasn't working. I had gone to the rest room and was then heading downstairs to grab some lunch with Matt and bring it back up.  I popped my head back in Abby's room to let the nurse know we woul...

I cannot believe that Abby will be trachless in two days.  Amazing. Really, our adventure starts tomorrow evening when we go to RMH.  We'll stay there Wednesday night and then head over to JHH at 6:45 a.m.  See why we are staying at RMH?!  Her surgery is scheduled for 8:45, but I wouldn't be surprised if they took her early.  JHH has been really great about being on time or early since being in their new building.  They have operating rooms for each of the specialties, which REALLY cuts down on the emergency bumps!  Love it! While under anesthesia, the ENT will check out Abby's airway one last time.  It's routine and we are not expecting anything strange, but he just wants one more peek.  He will also clean out her ears again, since she'll be under anyway.  Doctors can't see her right ear drum now that the tube isn't there (Abby's ear canals are special...), so our ENT wants to get a good look at it to make sure there isn't fluid bui...

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 ...

... I very nearly lost my girl.  It was at this time exactly.  And I'm very, very thankful that I didn't!  A few things have changed since that post... ...I'm much more confident in myself as Abby's caregiver now than I was when that happened, just a week after we first brought her home!  I'm such a different person now than I was a year ago. ...The nurse who was a "keeper" turned out to be a "fire-er."  She was the first of 11. :o/ ...We haven't gone back to our local hospital since that day, choosing instead to drive straight to JHH whenever we've needed to go to the ER.  Unless an ambulance is necessary (like it was a year ago), this is what we will continue to do.  JHH knows Abby, knows trachs and vents, and knows complex medical conditions.  Amen. ...We've gotten to know the nurses in the IMC pretty well!  I don't know if that is a good thing or not... I've mentioned it before, but it's hard to describe the...

So, if you're not friends with me on Facebook, you may not know about our little trip to the ER on Wednesday.  Yes, we were just discharged the day before...almost exactly 24 hours before we went back to JHH.  Abby tolerated her feeds all night (she is fed continuously at a slower rate) but couldn't handle her daytime feed--much more food in a small amount of time.  She got sick three times in 5 minutes and it was bubbling out of the trach.  After a call to our pediatrician, we were instructed to go back to the ER.  Unfortunately, the ER doctor just kept saying, kids throw up.  That's what they do!   Yes, but kids do not throw up from their trach!!!   She failed to see our (and our pediatrician's) concern.  They ran all of the tests again to see if anything was missed.  They attempted to start and IV, but couldn't get it.  They drew blood, but it clotted.  After an eight hour stay and a lot of arguing with the doctor, we...

Last Christmas, we celebrated at Mount Washington. This Christmas, we were fortunate to spend most of it with family and enjoyed opening presents Christmas morning, but the last few hours were spent at the JHH ER. Abby’s secretions had increased on Christmas Eve, and we were keeping an eye on them. Nothing major, so we weren’t worried. Christmas morning, we had to suction her five times between 6:30 a.m. and 8:00 a.m. For Abby, that is a lot. We normally only suction three times a day! Although we had planned for the whole family to attend church (we had just one service, so we could drive together), I decided that it would be too hard to bring Abby in and out for suctioning. Matt dropped Abby and me off to hang out at my parents’ house (where we were going after church anyway). Abby continued to need frequent suctioning throughout the day, and it was obvious that she just wasn’t feeling well. I lost count at the number of times we suctioned somewhere around 16, which is more than ...

This is Not a Happy Post If you are looking for my typical Susie Sunshine post about everything being great and wonderful, you won't find it here. Because right now, I'm madder than I have been since I have been here. I chose blue for this post because it's supposed to be calming. It's not working. Soooooo it's 3 a.m. and I thought they were coming to do my vitals. Mildly annoying? Yes, because I get my meds @ 4 and they usually try to do them at the same time so I'm not woken up again, but whatever. Oh no. This would be the phlebotomist coming to draw blood and start an IV. Am I contracting and need a new IV? No. Am I on any medicines that require immediate blood tests? No. Am I in a dead sleep, trying to count every minute between med wake-ups and doctors? Why yes, yes I am. Seriously, I don't think people who work the night shift have any understanding of the sleeping patterns of normal people. What good do you think would come of drawing...

FREEDOM!!!!!!!!!! I had the most fabulous news today! Dr. K came to tell me that I am officially OFF of bedrest and am allowed to roll around the hospital! While I still need to take it easy (I won't be joining in the marathon that is currently running by the hospital!), I do not have to be flat-back and can take short rides around. Unless you have been on extended bed rest, you have no idea how exciting this is. Just rolling around looking at other people was quite entertaining. You just don't know. So if you'll excuse me, it might just be time for me to go on another ride! :) Sign My Guestbook Read Tributes Saturday, October 16, 2010 4:22 PM, EDT A Cool Way to Say Thank You During my adventure around the hospital (which was quite enjoyable-- thanks for asking!), my mom and I came across this box with little tokens in it. Intrigued, we moved up to get a closer look and discovered that they are "thank you tokens." There are cards that you ...

Tid Bits This is pretty much a stream of consciousness post. If you're not into jumping from one topic to another, stop reading now! Consider yourself warned. :) First of all, did you watch the Chilean miner rescue?! Wow, did I cry! It's pretty much amazing that all of them not only survived, but came out with minimal injuries! What a great story! I love that the "breaking news" today was something positive and encouraging for once. Matt spent the night last night and we spent the evening playing Phase 10 and watching Glee. It was almost normal...except for the vitals checks, medicines, and IVs. Yeah, except for that. I had loads of awesome visitors today! At mid-morning, 5 wonderful ladies from our church came bearing lots of yummy food. It was a great visit! Matt left shortly after they did, and I settled in to watch some of the live footage of the miners' rescue on CNN. A knock on the door revealed my favorite three year old! "Surprise...

Wow, You All Know Me Way Too Well... So, it cracked me up that people starting contemplating reasons why I would want the window open! I assure you that while climbing out of my 6th floor window to escape to freedom was somewhat enticing, I am way too scared of falling to ever do that. Much more likely would be me putting on a long-sleeved shirt to cover up my bracelets and IV and sneaking out of the hospital. Of course, getting home might be a bit of a problem... No, no, don't worry. I will be staying here with a smile on my face. When things get really bad, I remind myself that every needle, every IV, every day that I am in here means one less that Abby has to endure. That being said, tonight's dinner (yes, the food saga continues) was quite frustrating. When I took off my dinner cover in anticipation because I was quite hungry tonight, I discovered spaghetti with meat sauce and freezer-burned Lactaid ice cream. No, I'm not lactose intolerant. While I...