Sunday, December 31, 2006

A Song for Emily

This is pretty neat! Songs of Love is a non-profit org that created a personal song for Emily. We filled out some paperwork and sent it in -- Just click here to download Emily's song.

And here are the lyrics:
EMILY LEE
Emily watches VeggieTales,
Just like Linnea used to do,
She plays with her pacifier,
And watches Dora too.

She grabs at Mommy's glasses,
She grabs at Daddy's tongue,
Annabelle will play and dance,
It's a lot of fun.

And Annabelle will sing,
And she like to whistle too,
Emily likes to watch her,
It's a favorite thing she likes to do.

Emily Hope Lee,
She's one beautiful sister,
She's one of three and I'm sure you see,
No one can resist her.

When Linnea would go for walks,
She went with her red wagon,
Emily too will walk it's true,
And with Cindy Ah-yee she plays peek-a-boo.

Emily Hope Lee,
She's one beautiful sister,
She's one of three and I'm sure you see,
No on can resist her.

We call her Emily-bemily,
We call her Sugar-booger,
One thing's for sure, it's easy to see,
Everyone loves Emily.

Emily Hope Lee,
She's one beautiful sister,
She's one of three and I'm sure you see,
No on can resist her.

Emily Hope Lee,
She's one beautiful sister,
She's one of three and I'm sure you see,
No on can resist her.

Monday, December 25, 2006

Christmas Pics

We were adopted for Christmas. WOW! I don't even know what to say but THANK YOU!! Thank you to everyone who made this such a special Christmas for Annabelle, Emily, Diana, Cindy, and me. Here are some pics of the last couple of days from a Santa visit to presents on Christmas morning. Thanks! :)

Emily's Christmas Morning :)
Annabelle's cache :)
Yummy... videos
What "Santa" left
Helping Emily
Santa, Annabelle, Amanda, & EmilyLiu Family
Pwau-pwau & Emily
One happy Cindy!!
Beer mug, YEAH!!
Now that's a smile :)

Wednesday, December 20, 2006

Scenes from our life at Johns Hopkins Hospital








Mommy Make-over Time!!


Monday, December 18, 2006

High Numbers

Well, that title means a couple of things to me. Emily's O2 saturation has remind in the high 90's for a few days now and we are actually starting to get some rest. More accurately, Emily's incredible super-mom is getting more rest than even a few days ago. In case anyone was wondering, that is a good thing. The other thing that it means is that we have had over 9000 visits to this website! There are a lot of people checking up on Emily and our family, what an amazing thing to think about. As we care for Emily we sometimes think about all the people that care about her and the rest of us. For me it's kinda like when you are trying to think about how many stars there are in the sky and you end up getting side-tracked and start thinking about something else b/c you can't REALLY think about how many stars there are... well, I get side-tracked like that when I try to fathom the amount of people that are thinking about and praying for us. Thanks.

A couple things to note:
  1. Diana and I were able to leave Emily home with her incredible Ai-ee (Aunt in Mandarin), Cindy, to spend some time with my parents and see the Canadian Brass in concert on Sat, a surprise from them!! It was a little nerve-racking to leave, but not enough to keep us home. Thanks so much Cindy!
  2. We've been taking Emily on walks b/c it's been like 20 degrees warmer than it's supposed to be. I don't know why they call it "Winter" around here. They should have a different name for the seasons depending on where you are. This is Late Fall and after this we will have Spring. She just LOVES her walks. I gave her a leaf and a pine-cone to taste test the other day... we need to do more of that. When Emily is no longer with us I don't want to say, "remember that time when we were in Emily's room and..." I want to talk about when we were out and about tasting life. What's the point in preserving life if you then shelter it. If you safeguard you kids and keep everything from happening to them, then NOTHING will happen to them. Let 'em live. :) Easy for me to say, right? I mean, I know my kids are going to die. It happens when it is supposed to happen. No sooner, no later. I believe that.
We love you so much Annabelle and Emily! There is nothing greater than to see you grow and taste life.

Peace <><

Thursday, December 14, 2006

12/14 - Another Situation

First of all I am sorry, but I noticed today that I had 11 comments to "moderate" when I didn't even know that I set it up that way. So, the comments are now there. Please feel free to comment on the blog entries, I have relinquished my control-freakness.

Emily's been developing another infection and we've been battling it with the NIV protocol. Basically, we have been using the BiPAP, Cough Assist, Postural Drainage, CPT, and Suctioning to clear her out and get those thick secretions out of her lower lungs.

DISCLAIMER: They way we do things with Emily does not make other ways right or wrong. It is just the way we do it. Also, we are learning to tune her therapies a little here and a little there for optimal support. This is a "living" experience and is constantly changing. But, the bottom line is that with these devices we can improve Emily's respiratory condition, we believe, vastly. They are tools. We don't read much about the "bad times" that other families have, so I am recording all of this here, so others can learn from it... or critique it... we're open to anything.

I had just finished one of Emily's longer treatments (neb/cpt, cough assist, drain, cough assist, suction) and was setting Emily up to for a comfortable evening with Veggie Tales when she started coughing pretty bad. I switched on the cough assist again to, well, assist her coughs. In addition I started doing manual abdominal assists in sync with the cough assist. To give you a picture: I had the bottom side of my forearm below my elbow behind her head to give some resistance while I held the mask against her face. My arm ran down her side so I could place my hand below her Xiphoid Process, on her abdomen. It sort of looks upside down if you can imagine. During the exhale I would give her a thrust sort of in and upward. Try it, it makes you cough. :) Anyway, this is important b/c it is SUPER helpful in getting things up from the lungs and making them cough WITH the cough assist machine EVEN IF YOU ARE BY YOURSELF. After one set of 5 breaths I started suctioning when her sats started dropping into the 70's and then the 60's.

Emily's right nostril is very difficult to get down very far, so I was worried I wasn't going to get the good stuff out. I took the suction catheter and pulled on it with my fingers like you would scissors and a ribbon to make it curl. I wanted to get it to curve somehow to get down into her airway easier. Maybe b/c that warmed it up and stretched it a bit, or both, but it made it flimsy so it went right down where I wanted it to. The problem was that the secretions were so thick that they wouldn't suck out. I dripped some saline in and turned up the suction a bit, but I couldn't get the stuff out of her. Then she started gasping for breath.

I didn't want to pull the suction catheter out for fear of not being able to get it back in, so I gave her some cough assists with it still in (with manual abdominal assists) to give her the volume she needed to actually cough with the machine.

It is general considered dangerous to use the cough assist with the catheter down the nose b/c it could get pulled up and put down somewhere other than the larnyx where we need it to be. But that is what I chose to do at the time b/c I was more concerned about her getting some breaths than anything else.

I would have used the Ambu bag as well, but I wasn't EXACTLY sure where it was after our big move and I didn't want to leave Emily b/c she'd pull the catheter out. So, I used the cough assist to give her some breaths and coughs since every breath was really followed by a cough anyway. This didn't work right away, but after a few sets of this and continued suctioning down the nose and in the mouth (with a yankauer, NOT the suction catheter that I was using down her nose) her sats started coming up again.

Let me tell you, the abdominal assists really work. I wasn't getting anything up with the coughs until I started incorporating them. We've done it with two people, but I was alone this time. She started spitting out all this nasty green stuff that had come up from deep down, that is what you want to see. :) Ask your Pulmonologist and/or Respiratory Therapist about this if you don't know about it. It also brought up the plugs to where I could suction them out. I am sure everyone has slightly varying ideas of what a "plug" is... if we get a clump of junk that is either white or green (the kind that makes the tubing jump while it makes that loud *SCHRUNK* noise when you get it out) we call it a plug, it's easier. But, a plug is really anything that blocks
the alveoli from filling with air, whether it is an inhaled object or mucous of some sort. When the alveoli can't fill with air lung tissue will start to collapse, like a balloon with no air. This is called atalectasis. Every thick thing isn't a plug and all plugs aren't necessarily thick.

Anyway, with the suction catheter already down in her airway I was right where I needed to be to get the secretions up and out. The whole thing lasted about 10 mins before she was back at 98-99 all on her own. I put her back into a flat position to give her a break from draining and started with CPT again.

By this time Diana was back from the store and I had to, um... see a man about a horse, so she continued with another couple sets of cough assist to get what she could completely out. We did try going down her nose again, but couldn't get down so we got what we could out of her nose and the back of her throat. She is still coughing a bit off and on and we will do some more assists and suctioning before another official treatment time, but she is maintaining on her own and SHE IS HAPPY (the whole reason we keep doing this!). Diana was out getting Emily's antibiotics with Annabelle when this happened, so now we have some good ole' drug help too. :)

I have to explain two things.
  1. First of all I have a "flighty way of thinking" as one of the PICU Dr's put it, so let me know if this post is a bunch of pish-posh and hard to read.
  2. Second, Emily is our second SMA baby so these things have been a normal part of our life since 1/12/2004, when Linnea was first hospitalized in Denver... and that is why I am writing about it... because you need to know that you can do it too. Quick reaction to difficulty becomes sort of second nature during these unfortunate times and I think that we SMA parents need to feel empowered with the information that is available to us, especially because we live it day and and day out. If you think about it, very few of these Dr's know what SMA looks like outside of the hospital/PICU "acute" setting, so stand up to them and tell them what your child needs. There is plenty of medical experience backing up these protocols and we are the experts when it comes to the ongoing (chronic) care of our kids. Don't let anyone take that away from you. A good Dr. should tell you the same thing.
P.S. - Emily is getting her 5th tooth!! They're so cute, but they sure cause a lot of problems with all the secretions they create. :(

Tuesday, December 12, 2006

Christmas Cheer :)



I have said it before, we are a blessed family. Tonight a couple ladies from work, Christine and Joan, and their family brought us a Christmas tree, decorations, and stalkings!! They brought us our favorite, Chick-fil-A, and some other stuff to make us feel special... IT WORKED!! They hung out for a bit and it was a lot of fun chatting about normal stuff for a while. We love just hanging out, so, THANK YOU so much!!

Emily had a pretty good day. We caught wind of a nice cart that was designed for SMA Type I kids, so we are looking into it for Emily. We want to be able to take her out more comfortably, so maybe this will do the trick... as long as my insurance will pay for it. ;)

Monday, December 11, 2006

Back to work

So I started working again today. It had been 4 week since I was last at work and a lot of things change in 4 weeks! It was very weird and a bit depressing to be back at work knowing that Emily and my family was at home. Given Emily's fragility right now I didn't really like being gone all that much. Plus, Diana was up most of the night and I was sort of in that in between state, so we're learning to live zombie-like. I am sure other SMA families know exactly what I mean. :)

Since this stay we have become more active in the online SMA community and it has been fun getting to know many of the families, virtually. We have actually had the chance to meet a couple of them in person while we were taking Emily out to UT, so it has been neat to re-visit via the internet. There are a lot of incredible parents out there doing amazing things for their kids.

Emily continues to keep us busy. We are getting her diet dialed in, but yesterday she started this fever thing. I don't know who she thinks she is!! :) So, we are continuing with the frequent treatments b/c she is still weak from the hospital stay.

K - she letting us know she needs us. Signing off - Peace <><

Saturday, December 09, 2006

12/9 - Update - Doing Great!

Wow! Emily is just doing great. :) We have been working on getting her hydrated just right and I think we are getting it done. Too much hydration and these SMA kids have too many secretions. Not enough and they dry up which is bad for a number of reasons. Right now dry is not good b/c she still has some "junk" in that right lung. Dry junk is sticky and heavy and causes atalectasis, which is like you running out into traffic for an SMAer... not good. In case you didn't click on the link, atalectasis is basically some level of lung collapse. Severe atalectasis would be a complete lung collapse, which was the issue with Emily when we went to the PICU.

I'll just put a plug in here for one option SMA families have for pulmonary care. It is not hard, but intimidating -- but the results can be phenomenal. Proper use of the Cough Assist, BiPAP, CPT, Positioning, and suction can GREATLY increase your child's quality of life and their length of life. I'll be honest and tell you that we are not interested in putting Emily through Hell on Earth to keep her alive, but we are interested in treating her pulmonary condition just as we would our own. Heck, I have to use an inhaler at times and if I had sleep apnea or snoring problems I'm sure I'd use a BiPAP or CPAP as well. Anyway, Emily is our second SMA daughter and in comparison we have a better understanding of how the proper use of these machines can vastly improve your child's life. (We used them with Linnea as well, but not as aggressively for various reasons.) After a 3.5 week hospital stay and a completely collapsed right lung we are able to keep Emily's O2 sats in the upper 90's quite easily. She tolerates the Cough Assist treatments and all b/c it is a normal part of her life now and she even sleeps through the Cough Assist sometimes! The BiPAP is a welcome part of the day for an SMA child too, after some getting used to, b/c it allows them to really relax and rejuvenate. If you are an SMA parent considering the options for your child the NIV protocol is a viable option for your family and you can take it only as far as you want.

OK - so right now Emily has been at 99% or 100% O2 saturation for HOURS and she is as happy as can be playing with all her things. Since we've been recovering she has spent most of her time in bed, but we are making the most of this time and getting things situated. So, today we moved our entire third floor around to better accommodate Emily. We have moved the Toddler Medical Bed (looks pretty cool and is EXTREMELY helpful when doing her treatments) into the house and Emily has since taken over our Master Bedroom her stuff. We have subsequently moved into Annabelle's room (much smaller than the MB), and Annabelle has moved into Emily's old room (the smallest of all). I think it will work though. There was some disagreement about the practicality of the whole ordeal, but the point was to make Emily's care and comfort more appropriate for her needs and that is what we have accomplished. If we are fortunate enough to get a night nurse they will have space to work and there is plenty of space to hang out with Emily if she is not up to venturing around the house or elsewhere even if the nursing doesn't work out. That is the big news for the day, besides Emily doing incredibly well, of course.

Thanks to the families that have brought meals and for the families that have been spending time with Annabelle. You are a tremendous help and essential to our lives. I hope you know how much we appreciate what you do for us! :)

Thursday, December 07, 2006

12/7 - A Scary Day

Around 9AM this morning Emily's oxygen saturation started dropping... fast. We have dealt with these episodes before, so we felt prepared for another little event. They are always intense, but not like this morning. We skipped the Chest Physiotherapy (CPT) and went straight for the In-Exsufflator Cough Machine (aka Cofflator or Cough Assist) and cranked up the BiPAP machine for support between coughs, all the while suctioning any secretions that would come up. These episodes that come on so suddenly are caused by mucus plugs that shimmy their way into an area of the lung causing, in some cases, extremely fast desaturations. SMA kids often die this way. Emily's sats kept dropping while I was using the Cough Assist and suctioning in between sets. The last number we saw on the Pulse Oximeter was 11%. To give you a frame of reference -- if her sats drop below 92% we worry.

When I get nervous my voice shakes. When I am terrified my hands shake. My hands were shaking badly this morning.

At this point Emily was completely unresponsive. I had watched her eyes roll back into her head as I was calling her name, then she stopped breathing. We pulled out our Ambu bag (resuscitator ) and started giving her breathes with 6 Liters of oxygen attached to the other end. For about 5-10 mins we had her "bagged" like this, making her breath. During this time her oxygen saturation started to climb ever so slowly. After jumping up into the 80% range I started with the cough assist and suctioning again. This went on for maybe 30 mins. We were listening to her lungs with the stethoscope and there was very little, if any, air movement through her right lung. We feared another collapse.

During that time we switched from Cough Assist to BiPAP and gave her CPT. With Albuterol nebulizer treatments, CPT, Cough Assist, Positioning, and BiPAP we were able to recover her to a somewhat stable condition, but she was still requiring 6 Liters of Oxygen to keep her around 90%. At this point we could also hear more air movement in her right lung, but we knew we had to make a decision:
  1. Take her to the ER to be re-intubated
  2. "Let her go"
  3. Keep working on her the way we were and hope to get her stable
We had a few conversations with other SMA parents, but chose to keep working on her via a protocol that we are familiar with:
  1. CPT 10-15 mins
  2. Cough Assist 4 sets of 5 breaths
  3. Postural drainage
  4. Cough Assist 4 sets of 5 breaths
  5. Continue until able to sat above 92%
After about another hour of this Emily started sating well in the 90's and we turned her oxygen down little by little until we were at 0 Liters. She finally stabilized around 98% with NO oxygen and her lung was sounding much better. Amazing!

Once she was stable we started trying to figure out what we wanted to do. We needed to know more about what happened and the only place to do that was at the ER where they could take an X-ray to see if that lung was collapsed or not. We were reluctant to go b/c we didn't want her back in the PICU, but we really needed to see a Pulmonologist. We consulted the Pediatric Pulmonology team at Johns Hopkins and Emily's Pediatrician (also a Johns Hopkins Dr.) and decided it would be best to take her in, with full expectations of being seen by the Pulmonologists and her Dr. before any other decisions were made about her care.

Emily was stable and happy - two things we did not go to the ER with nearly four weeks ago. This visit was good. We saw the Pulmonologists and told them the story. I could see the grin forming on their faces when they said, "you guys did everything perfectly! The only complaint we have is that it wasn't taped because it would have been a perfect teaching tool for every Dr. in this hospital!" They were very pleased to hear how everything was handled and, let me tell you, we needed that encouragement after the last few hours, especially after the last few weeks in the PICU.

We have since made it back home and Emily is as happy as ever. The Docs helped us tweak Emily's machines a little to suit her needs better and we all agreed that back home is where we needed to be. We left with an inhalant steroid for Emily's lungs and she was very dehydrated (not a good thing AT ALL for SMA kids) so we are giving her more fluids. Oh yeah, her chest X-ray looked better than the day we were discharged from the PICU so things are looking very good! She still had junk in her right lung, but we are working on that... around the clock. We are still not able to have nursing covered by my insurance, so alone we will be until we can figure out a way to get shift nursing.

So, that's the story. Things learned:
  1. Most every SMA family needs a GOOD Pulmonology team on their side and the Johns Hopkins Pediatric Pulmonary team is a good one. They even support more aggressive care with Type I kids and that can be very difficult to come by.
  2. We are grateful for our incredible Pediatrician, Dr. Dudas - SMA families need one of these too
  3. With these two things SMA families can feel comfortable taking their child to the ER
  4. Diana's two cents - MOST IMPORTANTLY -- We learned that Diana and I are a GREAT team for Emily. We fall into our roles and get things done pretty flawlessly. We are grateful for each other's unique abilities and we cling to them. (Thanks for trusting me Diana!)
Thanks for reading.

Wednesday, December 06, 2006

12/6 - esta mañana

One night down, thousands to go. Emily was so happy to leave the hospital last night. We put her in her car seat and she started whipping her head back and forth looking at everything. She was watching all the lights and looking at all the people on our way out. She loves going for drives so it was fun to look back from the drivers seat and see her little face. She just looked so relaxed and happy.

We had tons of stuff to get situated once we got home. We had become accustomed to having certain things in certain places so we could grab them without thinking about. Well, it took some time to get those things where they needed to be. We are going to rearrange our home to better accommodate Emily's things. We're giving up the Master bedroom so we can all have a bigger room to hang out in with her when she needs to be closer to her stuff. Also, this will help us provide a more comfortable workspace for shift nursing, when we get it. So that's our next big project.

We were told that we don't qualify for coverage for Emily's special formula called Vivonex so I am trying to get a straight answer from MAMSI about that. They have told us that b/c it is "over the counter" we do not qualify, but she should b/c she is tube fed and it is medically necessary b/c of issues brought on by SMA. Anyway, just a little window into the types of phone calls we have to make every day.

Gotta post this b/c it is taking all morning with the phone calls.

Emily is HAPPY!!

Monday, December 04, 2006

12/5 - Exodus

So today is the day! We are scheduled to begin our mass exodus from Johns Hopkins and the Ronald McDonald House this afternoon. :) I'm getting the equipment details taken care of as best I can so when we get home we'll have everything we need. MAMSI is still holding out on some things, like Emily's special formula, but we'll keep working on that. Also, shift-nursing is still not covered so we'll have to see how we fare. The HR folks at my company are working on getting that part of the policy changed, but there are NO guarantees.

Emily has not totally recovered and our schedule is going to be pretty tiresome when we get home. I will continue making updates about her condition here so please keep coming back to see how things are going. The good thing is that we are out of the hospital. The not as good thing is that we are still in the middle of respiratory season. There is some anxiety in thinking about Emily's health this winter, but all we can do is what we can do. :)

You all have been so generous with your lives over the past 3+ weeks and we are forever grateful for you. We are going to have meals provided for a while as we transition and that is just incredible. Thank you so much for everything you have done for us during this hospitalization. We are so happy to be taking Emily home b/c there were times where we were not sure if we'd be able to.

Thanks to all our nurses and other medical staff peoples for taking care of Emily. I hope we don't have to see you again, unless it is for social reasons of course. ;)

I'll keep writing things here as we being our retrospective thinking this evening. We learn so much about life each time we are in the hospital and I am sure I'll write about it as much as I can in this bLog. So, if you'd like, please visit often. :)

Peace <><

12/4 - Update - Tomorrow

Well I came in this morning and the Dr's were rounding and talking about Emily. They looked at me and said, "What do you think?" I told them that we're ready to go home. Not because we are tired of being here, necessarily, but because we can handle her current level of care at home... and probably better from a respiratory standpoint since we can be more consistent since there are only three of us doing her treatments. There is still some weaning to do but we can do that at home. So, the plan is that we will go home tomorrow, if that wasn't clear. I didn't want to sound negative and say "maybe, because anything can happen," but that is sorta what's in my head. We pray beyond prayer that we will be going home tomorrow and Emily will be prepared to do so.

So our new challenge is getting shift-nursing for night help, at least, and then some other DME stuff like supplies for the equipment that we own. My insurance company, MAMSI, is telling us that shift-nursing is not covered, so we're seeing what we can work out. If any SMA families are reading this and considering insurance companies DO NOT use MAMSI's Optimum Choice if u can avoid it. They are not helpful. I don't know about their other plans, but ours is nicht so gut! (not so good)

So, we have a great nurse today, Aubrey, and she makes our days much more relaxing. Thanks Aubrey!

One interesting part of hospital living is getting to know the parents of other kids that are here. There are only a few that have been here as long as us, but we all have our stories. Other families are dealing with some crazy stuff too! We are not alone in our emotions and every time we notice some emergency going on we worry about which family it is all for.

OK - gotta figure some stuff out now. Cheers! :)

12/3 - Update - Blah

Today = Blah

We are pretty tired. We took Annabelle to see Happy Feet today, it was ok but we have a lot on our mind and plate. Plus, they put a little too much emphasis on... umm... mating. I don't think PG-aged kids need humanized descriptions or visual representations of what penguins do when they mate. Show me two penguins mating and I'm fine to let my kids watch, but they don't thrust their hips and act sultry -- at least none of the Emperor Penguins I have ever seen.

OK -- next on the agenda -- we are tired. Oh yeah, I already said that. We are on the home stretch. We are like horses smelling the trough or whatever that saying is. We need to get home where Emily can get consistent respiratory treatments from her mommy and daddy. I am with Annabelle at the RMH b/c she had a little break-down and needs to be with us. Goodness, she's been away from us for nearly 3 weeks with some visits in between. Diana is at the PICU b/c we we felt more comfortable having one of us with Emily while we are trying to transition back to home care and get home soon. We are not allowed to sleep in the PICU b/c it is an open room. Fall asleep and you get a ticket home. This makes things very difficult for us. It's hard to rest when you are, well, awake all of the time. We need to go home now.

So - some thoughts. Being around a hospital makes me think -- Man, we sure do a lot to save lives in this world. What so important about life?? What makes it so special?? Why do we go to such lengths to preserve it?? Just some questions -- Cheers.

Peace <><

Saturday, December 02, 2006

12/2 - Update & Pics

Well we are feeling pretty good today. All the medical staff seems to appreciate our perspective and we are able to plan out Emily's day pretty well. She's pretty tired from getting a lot of cough assist sets and all, but it is good. We are clearing a lot of secretions out of her system. We are not sure when we are going home, but maybe sometime this week. I have taken these past few weeks on Unpaid Leave as well and that cannot last forever. I am thinking about going back to work on Mon, but there are still a lot of logistical things to be planned for the return home.

We have had so many incredible people come to sit with Emily and/or us, bring us meals, and take Annabelle for play dates. Thank you so much. Hopefully we will be going home soon and until then your time will continue to be VERY much appreciated. :)

Friday, December 01, 2006

12/1 - Update - Conversatin'

Wow -- I can't believe that I haven't posted anything since LAST MONTH!! Ha, ha, ha!

Sorry 'bout that silliness -- So we are still here. Today was full of conversation. We are sort of in a difficult spot where everyone is trying to determine when we should go home. We feel comfortable with Emily's current level of care, but we don't want to leave too soon and end up right where we are in no time at all. Our experience with SMA is that each of these sicknesses fast forwards our time with our baby. We brought Emily to the hospital with an acute problem (collapsed lung) and now we appear to have moved back to Emily's typical chronic issues (rigorous respiratory care with periodic plugs and thick secretions) with some different dependancies. Since we are still in the PICU when Emily has any respiratory issues it looked as another acute issue when it may just be typical Emily. They MUST see things that way in the PICU though, and we understand that, but it may not be the best for helping Emily. She needs aggressive respiratory treatments when she has problems if she is going to get "better."

I'm not criticizing the PICU, they're great, but we've gotta have an "exit strategy" and we sorta have to help everyone understand when we think Emily is ready to go home.

Anyway, I'm writing this from my cell phone so I'm gonna stop here. My fingers are getting tired.