{Brother Pictures}

Not sure when I will get a good photo of these two together, but doesn't look like it is happening anytime soon...

Best ones so far...*sigh*

{Faces}

We are stuck at home due to the sick kiddo (and let's face it, the soon-to-be sick kiddo), so I figured a few pictures of our smiley boy would help pass the time.  Luke is still sick.  He is coughing up a lung.  We go back to the pediatrician tomorrow to check his cough (it was originally his 2 year check-up, but that's out the window).  And of course, Ben slept horribly last night.  I should know better than to announce that he is sleeping.  The cardinal rule is that the minute you admit that your child sleeps, it goes out the window, so don't say anything.  Shame on me.  Hoping tonight brings sleep and tomorrow brings healthy kiddos!

{Little Ham}

Luke went from bad to worse yesterday so we spent our morning in the pediatrician's office getting him checked out.  Verdict?  Croup.  I don't know why every virus is out to get our two boys, but apparently we are on their hit list.  I am just praying that Ben doesn't get this.  Seriously.

To lighten the mood, I thought I would share some adorable pictures of our little ham in the bath last night and also share some news.  This little piggie started sleeping through the night!  He is going from about 9:30 pm to 5:30 am.  It isn't consistent yet, but it is happening.  It's happening!!  I was so scarred from Luke's lack of sleep his first year, I am having trouble believing that this one is actually sleeping, but he seems to be getting the hang of it.  Can I get a woooooo-hoooooooo?!?!?

Ok, back to taking care of the sick one.  Seriously...Ben.  Do not get this. 

{Happy Birthday To You}

I can't believe our sweet and crazy Luke is 2 years old!  We followed our annual tradition and ate at Avalon Diner for breakfast to celebrate!  Here is a picture of Luke is drinking a chocolate milkshake before he spilled the entire thing all over his shoes and floor (cue meltdown).  Unfortunately, I picked him up from school today and he had a fever of 102.3.  Remember last year??  Apparently he has his own tradition of being sick on his birthday.  Ugh!  At least we aren't having his party for 2 weeks so hopefully he will be well.  Can you believe how much he has grown in just a year??

{A Look Back}

We have been back at home as a family of four for about a week and a half.  Ben is wonderful -- back to his old self and growing, growing, growing!  It is funny, once we left the hospital, he barely had a sniffle or cough to speak of which is just crazy to me with everything that he went through.  We are still catching up on life, but overall we are back to our normal routine.  It feels right. 

It is really hard for me to think back to those 2 weeks.  I have never been more terrified, sad, helpless, exhausted in my entire life.  As a mother, I have trouble putting into words just how scary this was and what it truly felt like to see your child in this state.  I can't articulate how hard and devastating it all was.  I see our sweet Ben and it bring tears to my eyes thinking of him in that hospital bed in the ICU with all those tubes coming out of him.  So I try not to think about it.  But I know I will want to have this as a memory in a weird way as a mother, so I am going to post some pictures of our ordeal to document it.  Here was those 2 weeks as they happened -- in chronological order.  You can see the transformation and when our little guy came back to us....

  

 

{Oh Happy Day!}

We have the final update on Ben...he got discharged from the hospital this afternoon! We are so thankful to finally be home after 13 long days. I still can't believe all that he went through these past two weeks and how well he recovered over the last couple of days. We have a final doctor's appointment this Monday with his pediatrician to check on him, then we are putting this behind us.  I have lots of pictures to post of our experience as well as some thoughts on how this affected me and our family.  But I am beyond exhausted, so I will save that for another day.  Thanks to all who prayed and thought of us over the past two weeks.  It meant the world to us!

{Day 10}

Good news...Ben has shown remarkable improvement in the last 24 hours!! After 10 days in the ICU, they moved us to the PCU (Progressive Care Unit - the step-down unit just below the ICU) this afternoon. They think we will spend a couple of days here. They want to wean Ben to normal air (he is still on oxygen), make sure he starts nursing more and want his respiratory rate to decrease some more (it is in the 60s/70s). He still has some work to do, but Ben is definitely on the mend. 

 

We hope to be out by the weekend and get back to normal life. I can't wait to shower regularly, sleep in a bed (actually just sleep!) and pee in a non-public restroom. But mostly, I can't wait for all of us to be healthy and under one roof with Ben in my arms. 

Thank you all for the prayers!

{Day 9}

I wanted to post a quick update on Ben. He is on day 9 in the ICU and continues to be off the ventilator. Unfortunately he is still breathing heavily and at a very rapid rate. To help manage it and avoid reintubation, they have been alternating between high-flow oxygen and CPAP (think sleep apnea mask - he hates it). After an exhausting 2 days since he was extubated, it seems to finally be working. For the first time he seems to be breathing a little bit easier this afternoon (in the 70s/80s versus 100s). He has nursed for a few minutes a couple of times as well, which is good because they were considering putting back in his feeding tube if he didn't start soon which we wanted to avoid. Overall, I feel that today has been a better day -- which we have yet to have here so I am scared to actually say it because I have learned that it can change from hour to hour. The nights tend to be harder, so we will see what tonight brings. We are staying strong for Ben's sake and hoping this is the beginning of the end of this ordeal for him. Keep up the prayers -- sweet Ben needs them for just a bit longer!

{Day 7}

Sorry this post comes so late, but it is has been a very long day. Good news -- Ben is off the ventilator and that went very well this morning. Not so good news -- He is working very hard to breathe. His breath counts are extremely high. The doctors and nurses are working hard to keep him comfortable and taking other measures (breathing treatments, suctioning, high-flow oxygen, etc) to keep from reintubating him. We are going to remain in the ICU until he becomes more stable. The highlight of the day is seeing him open his eyes and when I finally got to hold him after 7 long days.  Here are a few pictures of the day....

The doctors and nurses extubating Ben

 

The first time I got to hold Ben

I pretty much had a meltdown at about 6:00 pm today.  It had been building over the past 2 days or so and erupted tonight.  I think exhaustion of staying at the hospital for the past 7 days and getting only about 3 - 4 hours of sleep a night set in.  I am so overwhelmed with worried and saddened that Ben is still so sick.  So I was sent away.  Chat told me that I had to leave the hospital for at least 2 hours or else.  Chat had my dad pick me up since he didn't think it was safe for me to drive.  I had not seen Luke since Tuesday and that was only for about an hour then.  It was hard to leave, after spending a little bit of time with Luke, getting to shower and wash my clothes (I won't share how dirty I was and how my clothes were starting to smell), I felt better so I headed back up to spend the night with Ben again.  I am still exhausted but my mind is much clearer and I feel like I have a better handle on the situation.

 

Until tomorrow...

{Day 6}

Today has been a rough day, but with a positive direction in the end.  It has been decided that Ben will be extubated in the morning.  The doctors have explained that the longer he is on the ventilator, the more risks of further problems. They feel he is strong enough to handle breathing on his own with the help of high-flow oxygen.  He will still be very sick once the tube is removed, but he will be able to handle breathing while fighting the illness unlike last weekend. 

The plan is they will stop feeds later tonight, stop sedation in the morning, suction all the secretions they can and then finally remove the tube.  He will be awake when they remove the tube and the hour(s) leading up to it.  This will be very challenging to watch, but I feel that I can handle it if I know we are moving forward.  We would appreciate prayers over the next day that this goes well and that Ben will tolerate being off the ventilator and that he will not be in too much pain or discomfort.   

If interested, here are some of the things that have happened since my last update:

• Starting last night and continuing to this morning, Ben ran a fever; His current temperature is normal.
• His heart rate and oxygen levels wavered considerably this afternoon; This has corresponded to when the fever started so they are testing him to make sure there isn't any secondary infection in his lungs that he would have gotten since he got to the hospital.  If there is, they will treat it with antibiotics.
• They determined his ventilator settings were wrong for a few hours today and that could be the reason for some of the "brady" episodes mentioned above, but only time will tell and when we get the result of the tests they performed.
• They attempted to lower his sedation medicine in order to start weaning him, but he has been moving, opening his eyes (trying to at least...they are too swollen to fully open) and acting very uncomfortable. Although I understand it is important to do this, I had a very hard time watching him. Around 5 pm, they finally put it back to the level it was originally at and we are trying to get him comfortable again.
• They performed the first pressure support trial yesterday and Ben failed it. He only made it for a little bit and his breath counts were too high. They performed the second pressure support trial this morning and he did better. He made it the whole hour and his breath counts were in the 60s and 70s versus the 90s yesterday.  Due to this second trial, they feel that he can handle breathing on his own.

I will try to update tomorrow after the extubation.  Please say prayers for our sweet Ben!

{Pressure Support Trial #1 and Other ICU Events}

A quick update -- Ben had his first pressure support trial this afternoon and he did not do well unfortunately. He was breathing too fast (90s) and his oxygen level declined. They have decided to hold off on anymore trials tonight and start again tomorrow. Therefore, extubating is not an option for the next day or two. I kind of expected this though since he still hasn't made significant improvement yet.  Lets hope Ben continues to heal and will tolerate these trials better in the coming days.  In other events in the ICU tonight, Ben had a bath tonight and was weighed.  This is quite hard to do when he has so many tubes and wires and it takes several nurses to accomplish it.  They are so wonderful and careful with him that it warms my heart.  Guess it is the mom in me, but I just feel better when my baby is freshly bathed and clean.  Here are a few pictures of his eventful night...

Ben getting weighed
(7.62 in kilograms -- 16 lbs 12 ounces due to lots of water weight :)

Ben's bathtime!
His poor eyelids are so swollen from all the fluids.

{Day 5}

We are on day 5 in the ICU at Texas Children's Hospital. Ben is staying strong as we move forward with getting him well and off the ventilator. We met with his doctors this morning and we received information on his current condition and also a possible timeline for extubating him:

• Ben's new x-ray still shows heavy mucus/secretions, but little to no significant change
• They have continued the IPV treatments every 4 hours to help loosen the mucus
• They had not been able to suction much mucus, but the respiratory techinician did get a signifiant amount this morning so they think the IPV treatments are starting to work
• Ben's "brady" episodes where his vitals drop have decreased in frequency overnight and this morning, but still happen when he is handled or he coughs
• Due to these episodes we still have not been able to hold Ben
• Doctors have decreased the ventilator rate down to 17 (from 20 yesterday, 24 Tuesday, 26 Monday) -- making his lungs do more of the work
• He now has a "leak" in his ventilator tube -- this actually means there is air escaping around the cuff on the tube. This is a good thing because it means those airways are not as swollen and there for the cuff does not fully expand to meet it
• He is on day 5 of the antiobiotics to treat his bacteria pneumonia -- they still have not received the cultures to make sure this is the accurate antibiotic, but 95% of cases use this antibiotic so they are confident it is taking care of it, but this is still being watched
• Since there is a risk of being on sedation for more than 5 days since it is a narcotic (they can have withdrawal symptoms if on it for more than 5 days), they plan to try to not administer any additional doses unless necessary and even start to slowly wean him from it over the next 24 hours
• They are going to try to start some pressure support trials to determine when we can start the weaning process -- this lets him try to breathe on his own with minimal support from the ventilator. If he struggles to breathe, it automatically kicks on and does it for him. Some babies do not tolerate these trials very well since he essentially will be trying to breathe through a straw since his ventalation tube is so small
• The goal is to get the tube out this weekend -- but again, Ben sets the pace so we are taking it day by day

Once Ben is off the ventilator, he will be observed in ICU for 12 to 24 hours and then we will be moved from ICU to another unit. I am not sure the timeline from there, but there could be a real possibility we are home by early next week. Once off the ventilator, they expect him to have congestion/significant cough for up to 3 weeks, but at least breathing on his own and without laboring causing the distress he experienced this past weekend.

Last night Ben knew I needed a little hand holding.  After a very long, exhausting week, I was struggling to stay positive and tears were free flowing.  It was late...just Ben and me hanging out in room 23 of the PICU.  I was stroking his head (the only part of his body not covered in tubes and wires) and talking to him in the dark.  Even though Ben has been heavily sedated, his little hand grasped around my finger.  It was perfect, just like him.

{Day 4}

We are on day 4 in the ICU at Texas Children's Hospital. We met with his doctors this morning and here is a summary of his current condition:

• Test results confirmed that Ben has both a bacterial and viral infection -- this is the reason he is so very sick
• He tested positive for RSV
• X-ray shows he does have bacterial pneumonia
• Latest chest x-ray still shows large volumes of thick mucus/secretions which is causing the breathing problems
• Doctors started IPV treatments yesterday to help break up the mucus -- they are working, just very, very slow
• Doctors are weening his rate on the ventilator (he was at 26 on Monday, 24 on Tuesday and bringing it to 20 today) -- this helps him breathe more on his own (still supported by the machine) and so he won't be too dependent on the ventilator when he is ready to be off
• He still has "brady" episodes due to coughing and when doctors or nurses handle him -- his heart rate and oxygen levels decrease rapidly but they quickly bag him and bring back up his stats
• He is tolerating his feeds well through his feeding tube and they are slowly increasing them. They have fortified my breast milk with several things to make sure he is getting what he needs to heal
• He is still swollen a bit but getting better and also getting help from dieuretics

It seems we still have several more days, if not more, here in the ICU. Chat and I are doing well and spending most of our time by his bedside. We are hoping in the next day or two we get a opportunity to hold him. The bottom line is that Ben needs time to heal and he is setting the pace.