This cow is blue

Alex has been awake a lot today which is good and bad. It's nice to interact with her and read to her but she's more uncomfortable when she's awake and tends to fight the ventilator which in turn makes her blood pressure go up, etc, etc. It doesn't help that they've decreased her pain meds either. These next couple of days might end up being rough so please say a prayer for her. During rounds the docs say that she's proven to be a tough case to treat. She's not had the "typical" run of RSV so they are watching her closely and trying to keep a good balance of comfort and alertness.

Sleeping Beauty

Alex has been sleeping since I arrived this afternoon. She's def made progress in the past 24 hours which makes us happy. They tried some pressure support trials with the vent today which is basically a way to tell if she's ready to breathe on her own and be off the vent but she clearly showed she still needs the support. We'll just try again tomorrow and let her rest for now. As they work on weaning her off of the vent she'll need to be weaned off the narcotics. She'll get half the dose she's been getting the past couple of weeks and also get something to take the edge off.

Other than that, we are just patiently waiting. We want to thank all of our faithful followers for the prayers and words of encouragement you've left on the blog. We are forever grateful and feel so loved :)

TGIF

Alex was a sleepy girl yesterday and didn't wake up until almost 10pm last night. We had a nice visit with my sisters and talked for hours. My sisters are amazing young ladies and I share a beautiful friendship with each of them. If you have siblings you are close with, you understand the special bond you share. I know Jimmy feels the same about his brothers and sisters and we both feel so blessed to have such a big loving family.

The nurses tell us that Alex had a good night and she is tolerating the small changes they've made on the vent. She also had an x-ray this morning that showed some improvement in her lungs. This is great news and gives us Hope she will be off the ventilator in the near future. It's been a long week and we are glad the weekend is almost here!

Patience

Patience (pā-shəns) is the state of endurance under difficult circumstances, which can mean persevering in the face of delay or provocation without becoming annoyed or upset. I feel J and I have grown so much in this area over the past year but still find ourselves being challenged.

I started looking up what the bible had to say about patience and wanted to share what I found. Clearly, patience does not develop overnight in the life of the believer. God’s power and goodness are crucial to the development of patience in His children. Colossians 1:11 tells us that we are strengthened by Him to “great endurance and patience” while James 1:3-4 encourages us to know that trials are His way of perfecting our patience. Our patience is further developed and strengthened by resting in God’s perfect will and timing, even in the face of evil men who “men succeed in their ways, when they carry out their wicked schemes” (Psalms 37:7). Ultimately, our patience is rewarded in the end “because the Lord's coming is near" (James 5:7-8). “The LORD is good to those who wait for Him, To the soul who seeks Him” (Lamentations 3:25).

Alex let us know last night that she is just not quite ready to be weaned off the vent. It's hard to believe but the secretions are not slowing down. It's very typical of RSV and she is still testing positive for it. She does make a little progress everyday which we are so thankful for and we will continue to be patient and put our Hope in God. We appreciate the comments and knowing so many are still checking up on us :)

The evening post

It seems to be a good night. I (Jimmy) have been working long hours and it's good to come in to a calm baby. Nic tells me they've had a pretty good day, and that they're actually changing settings on the vent - with good responses. They may try to do a little test on her tonight to see how she does with the vent off (w/o actually removing it). But she may need to be more awake for that - so we're not exactly getting our hopes up yet.

But any little bit of progress is very exciting for us. The biggest hope for us is that she'll be off the machine soon so we can hold her. If you're a parent, you know how important it is to be able to hold your child close to you. We're patiently waiting for that moment.

In the mean time - if you have a child (of holding age), be sure to take advantage of it. Give him/her a big hug - and say a prayer of thanks.

She's back

And they were able to place the PICC line. Our prayers are answered.

No more bedhead

Alex had a pretty good night and has been awake some this afternoon. I arrived around noon and read her a couple of books, put some lotion on her, and we talked about girl stuff. She had a busy morning at the salon and she's rocking a new hairdo.

The nurses try to change her positions throughout the day and she definitley prefers to be on her sides. She was getting a little fussy on her back so we switched her to her right side and she seems to be more cozy and comfortable. I think she would fall asleep if it weren't for the hiccups that are making her mad right now. The PICC placement has been pushed off until 2. Wish we had more of an update but I'm sure this small one will be appreciated :)

Better luck next time

The docs put in an order in to try and have the PICC line placed again. It's def more cost effective and less invasive to have the placement done at bedside without image guidance (although the nurse did use a portable utlrasound today) but that didn't seem to work out so well. So plan B is to have the placement done in radiology in an operating room tomorrow using ultrasound or x-ray guidance and sedation. They will stop feeds at 6am and the PICC line should be placed around noon.

Daddy is playing with Alex right now letting her suck on the suction tube. It's just like the suction they use when you go to the dentist and she's making all kinds of funny sounds. She slept most of the afternoon and seems to be in better spirits tonight. It's hard to go home without our baby but we all need some rest and have another big day ahead of us tomorrow.

No Luck

A little after 11am the PICC line nurse arrived. She remembered Alex from the last time she placed her PICC line and felt hopeful going into the procedure. I left the room and came back 45 minutes later as instructed and the nurse stepped out of the room to tell me things weren't going well to and to come back in another 30 minutes. I decided to eat lunch and when I came back the nurse told me that she was not able to get the PICC line placed after several tries. She is notifying the docs and I'm waiting to hear what their plan is. I started reading the comments that were left while I was away and they were so sweet and brought tears to my eyes. It's good to be reminded and know that God is our refuge and strength and in our weakness He is made strong.

Waiting

...for the PICC line nurse to arrive. Things are busy around here so it's not a surprise that things are behind schedule. I guess it doesn't really matter on our end if it happens now or in the next few hours but I think I'll feel better once it's done. It's been a tough morning. Some days we feel so strong and others so helpless. As soon as Alex opened her eyes this morning I went to her bedside to talk to her and play with her hair. If she's alert enough I read her her cow book (her favorite book of all time). As soon as she heard my voice, she opened her eyes wide and she looked at me with such desperation. Her silent cry simply broke my heart.

We are grateful for the progress she's made and for the great care she is receiving. We know God is watching over Alex which is comforting and we are staying positive. I think exhaustion is kicking in and we are feeling emotionally drained at the moment. Please keep the prayers coming and know that your comments help to brighten our day :)

"I'm so over this place"

Can I please go home now and eat some real food? This plastic tube
just isn't doin' it for me.

Seriously...

Mundane

I started to write this post earlier this afternoon when I arrived to the hospital and I titled it "pissed off". There was no other way to say it. Alex was scrunching up her face, trying to let out a cry, and breaking through her restraints. We had to tuck her in bed like a burrito since the restraints weren't working and she really didn't like that either. It's hard to see her like this, but it beats the alternative of her pulling out an IV or even worse her breathing tube. After about an hour of squirming her nurse gave her some tylenol and she calmed down. She visited with some family for awhile and she's been sleeping for a couple of hours.

Many of you have asked if we have an idea of when Alex will come home but unfortunately we are still unsure. We just have to take things day by day, something we've learned how to do quite well over the past year. Her crit levels are looking good, but her CO2 levels are up again which means the weaning of the vent will be put on hold for now. They plan to put in a PICC line (peripherally inserted central catheter) tomorrow morning which allows for intravenous access for up to 30 days. She currently has a central line and another IV in her foot but to decrease the chances of infection they will both be pulled tomorrow. Some of you may remember Alex having a PICC line placed last December for a couple of weeks so that she could receive IV antibiotics at home. The nice thing about a PICC line is we don't have to worry about having her poked all the time or the IVs collapsing.

We want to thank Dana Logue for helping coordinate meals with our church and small group and we certainly appreciate being well nourished :) We want to also thank the family and friends who have visited us here at Children's and brought us goodies. We thank God for all of the people supporting us and showing their love through the blog. You have all touched our hearts and the power of prayer and HOPE is so evident to us each and every day.

Peace and Hugs,

The Diffees'

Baby Steps

After our post yesterday, Alex slept the rest of afternoon and evening. She had a pretty good night and is doing well this morning. They had to turn her O2 up last night and we will find out once the docs round if they plan to change any of the settings on the vent today. They are still giving her meds to keep her asleep since she doesn't seem to do as well when she's awake. It's probably a combo of her getting anxiety and getting worked up when the RT's give her the breathing treatments or the nurses mess with her. As they wean her off the vent they will also wean her off the drugs and try to get her on a regular schedule with eating, sleeping, etc.

We'll keep you posted. Please say a prayer for our little fighter and for her parents. She's been on the vent for a week now and it's been even longer since we've been able to hold her. We are really missing her.

Smiles

We arrived at the hospital today to find Alex awake and feeling better. She's been smiling and crinkling up her little face when we make all the crazy sounds she likes. It's hard to put into words how happy this makes us and what joy we have from the small interactions we've had with our baby girl this afternoon. Tears are just coming down as I write this. We have so much to be thankful for.

The nurses have mentioned that they think she may be upside down which is when they have their days and nights confused. Uh oh, not what mommy and daddy wanted to hear. The past couple of days she has not been awake at all when we've been here but they have assured us that they have some tricks up their sleeves to help turn her back around before she goes home.

The docs have started to turn down some of the ventilator settings and she seems to be tolerating that well. She still has a lot of secretions but they are thinning out and breaking up much easier. All of these signs mean she moving in the right direction. God is certainly answering all of your prayers and lifting our family up. Thanks for sharing in the struggles and in the overwhelming joy we are experiencing today :)

Your weekend update

Things are quiet around the hospital today. The docs discussed in rounds that they didn't want to change any of her vent settings quite yet so we'll just hang out with her today and maybe get a nap in ourselves :)

Slllllllllurrrrrp

The sucretions just keep coming and we keep sucking. She's awake (sort of) and we've been talking to her and suctioning out her mouth and nose. She tries to suck on the suction tube which is so funny.

Overall, she's had a good afternoon and evening. She had a sponge bath earlier so she smells baby fresh and is tucked cozy into bed. Let's pray for a good night's sleep :)

Crit levels up some

Just talked with docs and her crit levels are up some, which means her little blood factory is working. Lets hope she keeps it up.

Vampires

I wish there was more to report, but it seems like things are pretty much stationary right now. Good news is that she hasn't been getting worse. There has been talk of a blood transfusion to get her "crit" (red blood cell) levels up. They have been drawing quite a bit of blood for tests and she's just not replenishing it fast enough. My solution is to just stop taking it out, but i guess they need to do it to stay on top of any new bacterial infections. And of course as i write this they're drawing more blood in order to determine whether to make any adjustments to the vent.

When I arrived this morn i was so excited to see her eyes open. Not much, but she was awake. So I talked and sang to her, and suctioned the druel out of her mouth (which she seemed to like, since it created a soothing suction in her mouth which she can't get herself w the breathing tube there). This may not seem like much, but it pretty much made my day. She been so snowed lately that it's as if our Alex has been in a coma - not really responsive to anything we do. So this was at least a glimpse of her personality. We really miss her.

Is it Friday yet?

As most of you have already noticed, this is the first post of the day. It turned out to be quite a stressful morning that included mommy having a meltdown. When it rains it pours I guess. Why do things break or stop working when it's the worst timing? Why do my coping skills go down the toilet when things stop working? Our dryer decided to stop producing heat last week and our laptop, that I use to work from the hospital and faithfully post on the blog, wouldn't boot up this morning. I've been holding up pretty well this week but the computer pooping out just pushed me over the edge into a sobbing mess.

Cat got the lucky phone call from me this morning. This isn't the first time she's gotten a call like this or seen me walk into her office in tears. I've known Cat for almost 2 years, although it seems like much longer, and she's been my rock. I really do believe that God places people in your life for a reason and he knew I would need her to lean on. My life has transitioned and changed so much in the short time I've known Cat. My dad passed away shortly after I met her and about 3 months later I became pregnant with Alex. It was a tough year dealing with the loss of my dad, finding out that our child had spina bifida and helping care for my grandmother who has severe dementia. Cat has been a best friend to me and has been there for me on a daily basis through the difficult times and has helped me to celebrate the good times. Today, after my desperate phone call, she managed to check out a laptop for me at work, get it set up so I could work from the hospital and drive to Children's to drop it off and bring me lunch. That's how amazing she is and I don't know what I'd do without her. I would post a pic of us if I had my computer :) We are so blessed to have so many great friends and a loving family to share life with.

Since this is Alex's blog, you probably want to hear an update on her. Good thing I had an interesting morning because not much has changed since we left last night. She's still needing round the clock care to manage her secretions and keep the pressure in her lungs down. Still waiting for her to turn the corner and start getting better. When I finally arrived to see her, everything fell into place and I was at peace. She looked like an angel lying there so peaceful.

Thanks for all the great posts over the last 24 hours. It was so nice to hear from so many and know you are following our journey. Please keep praying for us and we'll keep you posted.

How about a "happy alex"

Here's a happy video (repost) to keep reminding us what it's going to be like very soon, when Alex get's better:

More of the same

Time is moving slowly or maybe we are just getting more and more tired. We are settling into a routine and waiting for Alex to turn the corner. No new updates. She's still sleeping and remains stabilized.

We know a lot of people are praying for Alex and reading the updates and we thank you for that. It would be so encouraging to hear from those who are visiting the blog. Please don't feel pressure to post something profound or feel like you can't post because we don't know you or any other reason you may be hesitant. I guess we are getting a little weary and Alex would love to hear from her fan club :)

Redecorating

Not a whole lot to report this morning. She had a pretty good night, and has been sleeping all morning. I think the Fentanyl might have something to do with it, but we're okay with that. Better asleep & calm than awake & squirmy.

I guess the pressure in her lungs is a little higher than it should be - they say that could be due to the sticky mucus not letting her lungs inflate as much as they should. I really don't know the severity if this excess pressure, or what they're going to do - so will just wait.

I did a little redecorating in her room today. Put up some pictures of her when she was in better spirits, just to remind us. It's been almost a week since we've seen her smile.

More sucking

Alex was awake for awhile tonight, although a bit out of it. She doesn't seem to have much strength and she let's us know when she's uncomfortable. Most of time it's because she needs to be suctioned as she cannot cough with the breathing tube in. She's been struggling a little tonight and the docs had to bump her up on oxygen. But it's to be expected with the ridiculous amounts of mucus her body is producing.

We are heading home to get some rest and hope that our baby girl has a good night.

Rest

Things have calmed down since this morning when I arrived and it's been a peaceful afternoon. Alex is getting some much needed rest and mommy and daddy are feeling better.

Jimmy and I have been going home at night to sleep and it's been so quiet without Alex. We still walk by her oxygen tank and pause, just for a moment, because we usually turn it up at night. Same thing with cathing, we do this every 3-4 hours so after a couple of hours being home we still think we need to cath her. I guess you don't stop being a mommy or daddy just because your baby's not at home.

Thanks for all the sweet comments today.

Much Love,
N&J&babyA

Riding a bike downhill

I arrived this morning to the respiratory therapist adjusting Alex's breathing tube. An x-ray indicated that it was not quite in far enough. After adjusting it, Alex is clearly agitated and "feisty" as her nurse Paul describes her when she's mad. They think it's now in too far since she keeps trying to cough and she looks so uncomfortable. They attempt to adjust it again. Her machines are beeping non-stop, her little arms are flailing (as much as they can with restraints), and I'm trying to hold it together.

Paul tells me that some of the cultures came back and she is still positive for RSV and a new one HMPV (Human metapneumovirus) which is basically another really bad respiratory virus or what Paul refers to as RSV on steroids. Her little body has been trying to fight off both of these infections that can take out a typically healthy teenager. She is letting the ventilator breathe for her and as a parent this is painful to see. Paul reassures me that it's like she's riding a bicycle downhill and when she has the energy and strength to start riding uphill, she will start breathing on her own over the ventilator. The tube is finally adjusted and Paul notes that this should keep her out of trouble for a couple of hours.

Please pray for strength for our family and healing for Alex. We are lifted by your prayers and your comments mean the world and really do encourage us when we are feeling down. Thanks for being along side us and for your ongoing support.

BiPAP to crap

We were really not looking forward to this, but it was inevitable I guess - she's now on the ventilator.




She just has entirely too much mucus, and too little energy to fight it. She's sedated, so it certainly doesn't bother her. But we aren't fond of it, although we know it's for the best. The docs say this isn't uncommon for these types of RSV cases - so we're a little reassured.

Mostly, we're exhausted. Will post more later. Keep the prayers coming.

CPAP to BiPAP

Alex has been sleeping most of the afternoon and the docs have managed to stabilize her. Right after lunch the docs were concerned about her elevated CO2 levels. Basically they do a VBG (venus blood gas) which is a blood draw that measures the levels of oxygen and carbon dioxide in the blood. In other words, they are looking closely at the O2 coming into the body during inhalation and carbon dioxide leaving the body during exhalation. Because her CO2 levels were elevated they switched her to a BiPAP mask that covers both her nose and mouth and aids oxygenation and ventilation, minimizing carbon dioxide rebreathing. They had to rig a mask to fit her face because she just happens to be inbetween sizes but it's seems to be working so far.

Please keep the prayers coming as the situation is still very delicate.

Are we over the hump yet?

I showed up this morning to find our baby with a CPAP mask on. After a long night of spiking fevers and her oxygen levels dipping this morning, they decided to put a CPAP mask on Alex. CPAP (Continuous Positive Airway Pressure) delivers a stream of compressed air via the nose mask you see in the picture. The nasal cannula she typically has in was no longer enough. Her little arms are restrained because she wants to pull the mask off, but they did give her some sleeping meds that help calm and relax her.

I was only here for 10 minutes when her O2 levels dropped and her nurse had to bag her. About half an hour later, she dropped again and I had to yell down the hallway for help. She wasn't recovering on her own so a doc had to bag her again. It's pretty scary when this happens and as a parent your heart drops and you just go into panic mode. They've stopped her feeds as there is a 50% chance, if the CPAP doesn't improve her condition, she will need to go on a ventilator. Most kids peak at 3-4 days but the docs think the recovery from the surgery has prolonged the RSV and so we may be seeing the worst of it now.

Please say a prayer for Alex today. It's hard for us to see our baby girl so sick. We know ultimately everything is in Gods hands and He is here with us. We appreciate all of the support from family and friends and always look forward to reading your comments :)

Untitled

Not much new to post, other than a few pics. Her wheezing def seems to be getting better throughout the day. She's still pretty grumpy - & we haven't been able to get a smile out of her. But we'll keep making monkey noises & let you know when she does.

And here's a pic of her neck where they did the surgery. It's looking pretty good.

Weezer

Alex is sleeping tight now, literally. They swaddle her so she can't pull out her oxygen. She did well last night, and they've increased her feeding (via tube) to an ounce/hr, which is about normal for her. So she's probably much happier now - we certainly know how much she hates to miss a meal.

But she's still really wheezing, which is why we're still in the PICU. It comes and goes, and the Resp Therapist doesn't know exactly why - other than the RSV. So we're just continuing to hope she gets better on her own.

Valentine's Day

Not much new to report. Alex is still in the PICU but will most likely be moved to another floor today. The RSV is kicking her butt the past few days and with the UTI and surgery on top of that, she is worn out. She's also feeling hungry as she hasn't eaten since Wednesday evening. Since she is a nose breather and so congested, she can't seem to breathe and eat at the same time. She's getting what she needs from the IV but her poor little tummy is empty and she's not very happy about that. They plan to put a feeding tube into her stomach today so hopefully she will tolerate her feeds that way.

Keep the prayers coming and as always, we love to hear from you :)

Afternoon update

Alex is doing ok, but having some respiratory issues. She's receiving nebulizer treatments and the nurses continue to suction her out which gets her good and "pissed off". She also has another urinary tract infection so they plan to keep her in the PICU for now. She's been in and out of sleep most of the day and the nurses are trying to stay on top of her pain.

On a lighter note, a local radio station (Alice) is doing a radioathon live from the hospital called 36 hours for kids and they brought by a little build-a-bear for Alex that is so cute. Check out her bed head :o

Doing Well

Mommy and Daddy got some much needed rest last night and were asleep by 9pm. I don't even remember the last time we went to bed so early. When I arrived at Children's this morning I could hardly wait to see our baby girl. She has just started to wake up and her eyes were wide open. The nurses told me she had a good night. She is eating again, moving her neck a bit, and just being her happy self. She's sleeping right now and probably having happy morphine dreams. The surgery she had is pretty painful as they had to pull apart some muscle and go deep to operate but babies usually recover well and faster than adults who tend to keep their neck stiff.

I'll have to post some pics later since I don't have a fancy iphone like daddy (hint, hint sugar daddy). Thanks for all the thoughts and prayers and for being with us on this journey. It means so much to us to have such a strong support system and hear all of your comments.

Mom in a sweet yellow gown

People requested more pics w/us in them...so here's a glamor shot. Since Alex has RSV, which is highly contagious, we all have to dress up in HazMat suits to get close to her.

Alex's new friend

This is Alli, a girl from Montana with SB we met who is having a shunt revision surgery tonight by the same dr. that worked on Alex. She has a lot of similarities to Alex, but is 2 yrs old. She's the first person we've met with SB and it's so encouraging to see how healthy she is.

Out of recovery

And out of it. She seems to be doing well though (morphine may have a little to do with it).

She's in recovery

Wonderful news...we just found out the surgery went well, and they took her off the ventilator with no problems. We're ecstatic, although still a little loopy. We're not able to see her yet, as she's in recovery - but we'll take some pics & post more when she gets into the ICU, where she'll likely be for a few days.

Thank you so much for your thoughts & prayers. Just one more example of how powerful and effective they really are.

Under the knife

After getting up at 4am (not really even sleeping) and getting here for 5:30 check-in, then being admitted & prepped, we were told by the anesthesiologist that since Alex is sick (with RSV) he didn't think it was a good idea for her to go under. Not exactly the thing we wanted to hear after everything it took to get her scheduled for this surgery. He told the nurses to hold off on the pre-op stuff while he went to talk to the neurosurgeon. A bit later he came back in & said that apparently this procedure is urgent enough to outweigh the risks associated with sedating a baby with respiratory problems (most importantly that she would likely need to be on a ventilator for a few days - ah...the good old vent). So needless to say, this wasn't the ideal start to our day.

But the show goes on, we let them do their thing while we went downstairs to get some breakfast. Then we saw Jane (from Neurosurgery - the one who originally ordered the MRI, and pulled all the strings to get it and this surgery scheduled asap) who came to sit with us at our table. Jane is so sweet, we like to think of her as Alex's Aunt Janie. She explained the butts she's had to kick in order to make all this happen, and the importance of this surgery - how it could be the solution to so many of her problems (although it's no guarantee of course). It was much-needed reassurance, and she's so nice that it really put us in a positive mood about the experience.

So now we're waiting, half asleep, for what will likely be a 3-4 hour surgery where they are opening up the base of her skull and making room for the fluid to flow freely.

Thanks to everyone for all the prayers, we sure need them. We'll keep you posted as soon as we hear anything new.

Lots of things going on

Time for an update - sorry it's been a while, but we've had many unknowns regarding her condition for the past month or so. She's been completely happy, but definitely not completely normal for her age. We've had several studies scheduled, mostly for this week - such as: Urodynamics study to determine her kidney/bladder function, Swallow study and Pulmonology consult to determine her oxygen needs and wheezing after eating, and an MRI to determine why she would occasionally stop breathing in her sleep.

On Sunday we decided to take her in to the hospital because she was having some labored breathing. They admitted her & we found out that she has RSV, which is a virus that attacks the respiratory system. It's pretty common and usually misdiagnosed as a cold.


They kept her overnight, and then sent her over for the MRI on Monday evening,and got some pretty shocking results. Apparently she has pretty severe Syringomyelia, which is an accumulation of fluid in the spinal cord due to the area around her brain stem being compressed. This is part of the Chiari malformation which happens as a result of the spine pulling on the brain during early development in utero. For more info, see this page.

Based on this new diagnosis, they've canceled all her other appointments and scheduled her for surgery this Thursday to decompress the area around the brain stem. We're not sure exactly what all that entails, but think it might be something like what's described on this page (although I really don't know where the similarities lie).

So please pray for the little angel, as well as her parents - this looks to be a pretty big week for us all. There's a chance that this surgery (if all goes well) could fix many of the things that have been wrong with her, but it certainly comes with some big risks.

Thanks for staying with us,
-J&N&A

She's so big

And cute. We had to snap these when we were changing out her oxygen stickers. She looks like a different person without them.