Saturday, December 31, 2011

"Everything sounds good. Let's get out of this ICU"

Alex is getting back to her normal sassy self and is telling the nurses to "get back to work." her Oxygen needs are decreasing significantly, even while she's sleeping (which has been the biggest problem so far).

So the decision has been made to move her out of the PICU and up the the regular patient floor. So we're not exactly checking out, but def moving up.

Thanks for all your prayers and support. Especially want to send thanks to everyone who's helping us watch Ryan and Alex during this time: Alicia, Kathleen, Cat, Marissa and the N- Lo's (and my mom for flying up to help next week). We couldn't do it without you.

Thursday, December 29, 2011

Spa day

Alex is doing better today, although she's back on the steroids, so we're giving her some spa treatment to alleviate the 'roid rage.

Wednesday, December 28, 2011

up & down

happy girl awake

Alex was taken off the BiPAP this morning so we could get her up in a chair and moving around. She enjoyed this (considering she's been laying in bed for over two weeks) and her carbon dioxide level did come down some late morning.  She's doing great while awake but sleeping is a whole different story.  It's as if her little airway collapses when she falls asleep and air is not moving around the way it should. The BiPAP helps keep her airway open or at least that is what it's supposed to do.  They've been having issues finding a mask that fits well and finding settings that sync with her breathing to help her. If it's working against her own breathing, it can actually feel like it's suffocating her.  We are also starting a course of steroids which will hopefully help with inflammation but she does have the "behavior" side effects as they like to call it which really means she just goes crazy and is a mess.

The stress levels are at a high and seems we are moving in the wrong direction. The hard part is so many things are being pulled out of the hat with the hope that something will help but none of them are without consequence. Alex handles all that is thrown at her like a brave little soul that she is and hardly ever puts up a fight. When she was up in her chair the only thing she wanted was to go say hi to those outside the glass door. She really is so sweet even when she doesn't feel good.

big bad BiPAP

Tuesday, December 27, 2011

A nighttime struggle

It's just after midnight and I feel like I'm having déjà vu. Alex got moved to a different room in the PICU tonight so we are settling in again which reminded me of getting transferred here two weeks ago from the floor. Her carbon dioxide levels are climbing again just like last time and she's is on BiPAP again which was the case right before she got intubated.  It's a Tuesday, same as when she was admitted and so a lot of the same staff are working and we have the same nurse and respiratory therapist as we had the night she was transferred to ICU.  This definitely makes for a night of little sleep and worry of reintubation.

The docs think she is obstructing when she sleeps and although the secretions are thinning out, she still requires a ton of suctioning which could also be contributing to her struggle to breathe at night.   I'm not sure what this means for the morning and days to come but we should get more information during rounds in the morning.  Hopefully she just needs a little bit of extra support while sleeping and this doesn't necessarily mean we are taking a big step back or her condition is getting worse. She's been in good spirits and slowly weaning down on her oxygen requirement with reasonable carbon dioxide levels until the spike this evening. We'll keep you posted as we learn more.

Sunday, December 25, 2011

Christmas Day

So we're gettin' through another day and Alex is an emotional roller coaster. She's on a steroid that makes her go from laughing to bawling to sleeping to crying again. It's awesome that she is able to laugh and talk in her little raspy voice, but unfortunately she's doing more crying than laughing. I really hate when she gets put on drugs with psychotic side effects. And half the time the drugs are just an attempt at treating some random symptom which they aren't even sure about. But I won't go on about that. I'm just happy she's off the ventilator.

We had a visitor today. Jenene came and brought presents, and Alex was really happy to see her. Hopefully Mommy will get to come up, but finding someone to watch Ryan on Christmas day is next to impossible, so we'll probably just have to wait until later tonight or tomorrow. So today's certainly bittersweet to say the least, but we really have a lot to be thankful for.

The act of spending the day together as a family opening gifts and whatnot has become what most people consider a proper Christmas, but it really is so much more than that. Traditionally it's a celebration of the birth of Christ and everything he stood for, whether you have a certain number of family members together or not. We have so many days that we get to spend together out of the year that being apart on this particular day is no really no big deal in the grand scheme. It's all about your attitude, and if there's one thing I've learned from Christ is humility. We don't "deserve" to be physically together on this particular day. We really have a great life and incredible love that we share, and that's more than enough to sustain us. The small sacrifice we're making for our unbelievably beautiful and strong daughter pales in comparison to the one Christ made by giving his entire life to show his love for humanity. Now that's a meaningful gift. And the more I think about that, the more I realize that this is what Christmas is really all about.

Saturday, December 24, 2011

"Merry Christmas everybody"

Alex is just off the ventilator on Christmas Eve and wants to spread some Christmas joy with her newfound voice.

A breath of relief

She's off the vent now.

Christmas Eve Blessing

Alex is getting extubated this afternoon. Pray it goes well. Yay!


Sent via iPhone

Friday, December 23, 2011

Slowly but slowly

Just thought we'd give an update on Alex's condition. It's about 100% sure that we'll be spending Christmas at the hospital - as the extubation process (getting her off the ventilator) takes a bit longer than we'd previously thought. The reason for that is the last time Alex was intubated, she yanked the tube out herself. So the actual process of weaning involves lots of incremental tests to see how she handles breathing on her own. So she's up to 2 hours at a time with the vent doing no breathing for her, and she usually falls asleep during the test. That's probably because it's the only time she can fully relax - just imagine how well you'd be able to sleep with a machine pumping 12 bursts of air into your lungs every minute. But she does tolerate it really well, breathing on her own just fine and not really having to work at it. But they also do a blood test to see how high her CO2 levels are, and they're still pretty high (remember that was the main reason she was put on the vent in the 1st place). So they're not in a hurry to make any decisions right now.

So what does that mean? We're not quite sure, but it could be as early as tomorrow that they extubate, or even longer depending on the CO2 tests and her level of secretions. But we'll certainly let you know as soon as we do. Of course, being off the ventilator doesn't mean we get to take her home - we just get moved out of the ICU and onto a different floor until her oxygen needs are back to normal. So we're just playing it by ear, as usual.

Merry Christmas eve eve.

Thursday, December 22, 2011

The snow pile

Alex's Christmas Tree

We visited the "snow pile" yesterday which is an annual event here at the hospital where parents of hospitalized kids get to pick out gifts for their child and their siblings.  The hospital truly does a great job of lifting spirits and bringing the holidays to the children.  It was literally a snow pile of toys, books, clothing and stuffed animals. It brought tears to my eyes to walk around the shop and see the donations that would help make this holiday special for Alex and all the other kids who will spend Christmas in the hospital. The wrapped presents are now under Alex's own little tree in her room, thanks to my grandma who thought to bring a tree and Cat who decorated it.       

Just one glimpse of the "snow pile"

Ryan also had fun in the snow pile at home.  We got 12 inches of snow at our house so as you might guess it's going to be a white Christmas, but sunny and a high of 53 degrees. Yep, a true Denver Christmas.

Tuesday, December 20, 2011

Sing the "Applesauce" song

Applesauce, applesauce. Made for a rhinoceros.
Applesauce, applesauce - do not put it in your schnauze.
Applesauce, applesauce. Sell it for a really good cause
But what I love about that it tastes delicious.

Alex loves the applesauce's probably her favorite (right now). Of course it's just something I made up when she was eating applesauce one day. She has a tendency to request that I sing the "[random object] song" and I have to make up a song about it on the spot. But Applesauce was a hit, and has since been the most requested song. I even came up with a second verse, which was actually much better than the first, but I can't remember it for the life of me.

Then there's the game of "backwards/forwards." If you've been around her at all in the last several months, you've undoubtedly been sucked into this one. She says "I want it please" (like she starts every conversation) then "go backwards." I believe Marissa (her sitter) started it by walking backwards and pretending to collide with whatever was behind her. Alex cracked up, and naturally requested "go forward," and Marissa obliged. Then came "fall down" (among other commands). I'm not sure what it is about this simple game that Alex loves so much. Always the overanalyzer, I'm thinking it stems from her lack of physical control over her own body. So she gets a kick out of being able to pull other people's strings until they crash into the wall or floor. The game spread quickly, and her Nana added the effect of counting backwards and forward while marching (always an educational component in this household). Alex never tires of it, and the ones who indulge her the most - quickly move the top of her favorite people list.

I'm sure every parent has similar games they play with their children. The toughest part of this hospital stay is that Alex can't talk, which means no requests for silly games or songs. I still try doing them for her, but unprompted it's just not the same. And she can't laugh, so it's entirely anticlimactic when I finish performing. I'm sure she enjoys it, but the only thing I interpret from the look in her eyes is "I want this tube out of my throat." Sorry, baby. Just a little longer.

The question on everyone's mind is how much longer? The good news is that she is making progress now. They're slowly dialing down the ventilator settings so Alex is doing more of the breathing, and she's tolerating it well. The bad news is that it's a very slow process and it's not likely that we'll be out of here before Christmas. And since kids aren't allowed to visit the ICU it's pretty much guaranteed that the family won't be together this year. So this is def one of those years we're left pondering the "real meaning of Christmas." Which in and of itself is a good thing. It seems like its a lot easier to shift our focus from the commercialization of the holiday to what's really most important.

I want to say that we're a strong family and will get through this just like anything else, but it's really tough right now. We are strong, and don't fish for sympathy. We want to be that family that inspires other people to be better, stronger, and not take anything for granted. But to be honest, we can't always just be strong. We have our faith, and with so many of your prayers we know we'll get through this (thank you). But our state-of-mind isn't the greatest right now. It's one thing to go through all this as a family like we have so many times in the past. But right now we're split up, physically. Ryan+parent at home and Alex+other parent at the hospital. We've been juggling it, with help from Cat and Kathleen, but it's taking its toll. And it's likely going to get worse as Alex is less medicated. I don't know what the solution is, but I pray it gets better.

Sunday, December 18, 2011

Holding steady

Alex had a really good day and is more alert and opening her eyes.  She is still sedated but on a different sedative now that allows her to be more responsive while remaining comfortable and calm. It's so good to see her beautiful eyes again and every once in a while she gives us a wink which melts our heart. She's been watching football with daddy and we've been able to read her books and even put on Elmo's World.  We are thankful for her progress and steady state.  She wasn't ready for any settings to be turned down on the vent today but she is breathing more on her own which is one step closer to losing the tube.

Ryan is still not feeling well and having a rough time so we are hoping she will get some much needed rest tonight.  We are thinking she may have RSV because she has all the cold-like symptoms, it's a common virus easily spread by siblings and most kids get it by age 2. 

Ryan has her own little way of letting us know she misses Alex and we hope to have them playing together soon again.  The hospital just went on respiratory season visitation restrictions which will last until mid April and no kids under the age of 13 are allowed to visit, period.  This makes things a little challenging for us and Jimmy and I pretty much only see each other in passing when we trade off the home and hospital shifts.  My mom did hang out with Ryan today for awhile and Jimmy and I had a meal together for the first time in a week and hung out with Alex so that was nice (thanks mom). Anyways, we'll see what tomorrow brings.  Keep the thoughts and prayers coming our way =)

Saturday, December 17, 2011

resting & teething

Not much new to report today since the plan is to hold tight on weaning off the vent until the secretions thin out and she is able to start breathing on her own a bit. RSV causes thick copious secretions which tend to be sticky and hard to clear - hence why a lot of kids who are either already compromised or have an underlying lung disease have such a hard time managing this virus on their own.  

As for me and Jimmy, we are holding up and have to divide and concur.  I seem to be the only one in the family not sick. I've been staying at the hospital with Alex and Jimmy has been at home (aka the sick house) with Ryan.  She's also teething and I know this because I got a phone call at 2:00am from Jimmy wondering where the orajel was. Of course it was here at the hospital in the diaper bag so a fun trip to Walmart was made in the middle of the night. The best part of the trip was that the only check out lane had two Russian women price matching fruit and veggies, needing gift receipts, etc which took them over 15 minutes to check out. One of the women turned to Jimmy, noticed Ryan and commented that he had a sick baby.  He explained she was teething and the woman warned him to watch out if she runs a fever because that could mean she has an infection and needs to see a doctor.  Too funny.

Thursday, December 15, 2011

The waiting game

Alex is stable and moving in the right direction.  Her vent settings are improving and they are keeping her comfortable for the most part. She was pretty "snowed" last night and her blood pressures low so they backed off a bit on her pain med which made her more active and feisty earlier this morning.  She has a ton of secretions and she is coughing a lot so gets really agitated when they suction and mess with her. Although hard to see as a parent it's a good sign to be active, moving around and breathing more and more on her own. She will need to be weaned from the pain meds and sedation eventually to be extubated but until then it's a juggling act to manage her pain.  When she is agitated I'm reminded that she is also getting an amnesia med so she won't remember any of this.  This does make me feel better (in a weird way). 

We are still in a bit of shock that Alex's condition escalated to this level.  We knew she was getting sick and figured she'd be a direct admit from her PCP visit.  Instead we were transferred to the emergency department for the day and then finally to the floor Monday evening. Her condition went downhill shortly after we settled in and within a couple of hours they were calling a RRT (rapid response team) to evaluate her deteriorating condition.  Everything happened so fast from that point on and she was rushed to the PICU.  Despite their best efforts to stabilize her with less invasive measures she ended up needing to be intubated.  It wasn't until early afternoon yesterday that things settled down and her labs were looking much better.     

We are finally getting some of the tests and cultures back and miss Alex tested positive for RSV.  Unfortunately this is not foreign to us and Alex kicked off respiratory season in the PICU a couple years ago with RSV.  Because it's viral we basically have to wait for it to run its course.  The ventilator is allowing Alex's little body to rest and heal as it does most of the breathing work for her.  She is looking as good as could be expected so we are happy with that.  We pray that God continues to have His healing hand on her and that she makes a speedy recovery.

Wednesday, December 14, 2011

Sometimes it's hard to find the right words

Dana, a friend of ours said it best when she said "nothing is right in a momma's world if something is wrong with their baby." Well this is so true and I'd being lying if I said that I wasn't sick with worry or that I'm not scared.  I also have faith and I know we have so much love surrounding us, not to mention one strong little lady that never gives up.

It's very quiet here tonight and I've been thinking a lot about our journey with Alex and how she's changed our lives.  I think about all of the beautiful people we've met along the way and continue to meet as she gets older.  I was brought to tears reading the comments from Wendy and Stacey who get Alex home each day safely from school and the Elmo balloon that Ashley brought Alex because she thought of how happy she would be to see Elmo when she wakes up.  All of my amazing SB mom friends who can relate and know so well the stresses of being a frequent flyer at the hospital.  I love that I met my dear friend Amber from Billings, MT in a waiting room last time Alex was in the PICU who is still sending her love years later.  Over the years I've met the most amazing nurses that have cared for Alex and as most know I've decided to pursue my own career in nursing.  Whether Alex is in the hospital or we are out having fun, my nursing school friends always show their support and I know each of them are on their way to becoming amazing nurses. There really is so much beauty surrounding Alex and our family and we are so thankful for that.  It's what keeps us strong and helps us through these rough patches.  

We really appreciate all of the prayers and support pouring in from family and friends.  Know that we read your comments over and over again throughout the day and they mean a lot to us. Some people say they don't leave comments because they don't know what to say or they feel intimated by the other comments but anything you post is great and it's nice to know who's thinking of us and following our blog.

-Much love from the Diffees-

An unexpected visit to the ICU

It's with a heavy heart that I share Alex is in the pediatric ICU at Children's.  The typical upper respiratory infection that she is so vulnerable to this time of year attacked quick and hard this time and she needs a lot of support and help to fight it off.   She is currently sedated and on a ventilator to help with adequate oxygenation and ventilation. She is stabilized and has a team of amazing doctors and nurses caring for her around the clock. 

Everything has happened so fast and Jimmy and I are still taking it all in.  In this difficult time we ask for your prayers and pray that Alex will be lifted up to God for healing and strength. 

As Cat reminded me last night she is a fighter and our little princess warrior will overcome this illness. In spite of the worst case scenarios always being presented as possibilities, we have faith that God will comfort our little angel and carry her through this. 

Saturday, December 3, 2011

Bowling Tournament & Fundraiser

Thank you to all who supported Alex and our family during our bowling tournament and fundraiser. We really appreciate the contributions which helped us raise funds for special equipment. We've used some of the money to purchase a custom-made "Zip-Zac Chair" for Alex and she loves it. It's basically a wheelchair that's lower to the ground which makes it easier for her to get around and play with toys on the floor.  We plan to use our fund for adaptive equipment that will give her access to other fun activities like cycling and skiing.
Please don't feel bad or "sorry" for Alex and her condition. Our goal isn't to raise sympathy for her - it's the opposite actually.  We're doing everything we can to help her live a life free of sorrow and excuses, and teaching her to overcome every obstacle and challenge life throws at her. Sometimes it just takes a little creativity and resourcefulness.