Orders to Move

This morning during rounds, the ICU doctors decided that we could move out of the PICU onto the floor. Our nurse let us know this typically takes awhile due to hospital protocol, but probably by the end of the day. They told us that we'd be on the floor until we start to figure out what caused everything. Also, now that he's awake, you can definitely tell we've got a sick baby on our hands. He's lethargic, uninterested in eating (but it's possible that's because his throat is really sore from the breathing tube) and coughing still. We met with an OT today to see what she thought about his unsuccessful feedings by mouth, and she thinks he's still too pooped/sore to eat. So we'll continue the feeding tube and try again next time. That's about all that's new now.

Please pray that the doctors will figure out what is/was wrong and that some comfort will return to Isaac so he can get some rest and be interested in eating again.

Holding Her Baby

I am continually amazed at our God. With some of the "downtime" over the past few days I started reading The Question of God by Armand Nicoli. It's a compare/contrast book on the worldviews of Sigmund Freud and C.S. Lewis with regard to the existence of God among other topics. One of Lewis's arguments for the existence of God was that the complexity and order of life (from biology to physics to mathematics and on) points to an Intelligent designer. I remember reading this thought in Mere Christianity when I was in college studying physics, engineering and the physical order of the universe and it gave me great confidence in a Creator. Over the past few days of listening to the doctors discuss medicines, dosages, timing etc., I have a new appreciation for the complexity of created life and further confidence in that Intelligent Creator. What's more, after Isaac's day I have even more confidence that this Creator is involved in our lives and hears our prayers through his Son Jesus!

Since coming off his ventilator this morning, Isaac has continued to improve. At first he was raspy and coughing a lot, but apparently his lungs looked much better on the chest x-ray and the rattle was due to the effects of the breathing tube on his airway and stuff breaking up in there from him moving and wiggling around. But after some breathing treatments and time, he's no longer raspy; there's just a slight wheeze. Some of the meds he was on mess with the quality of this veins so his IVs weren't doing well anymore. So they took all his IV's out but later had to put one back in (but only 1). He's still on just a bit of oxygen, but not much. All in all, they told us we might move down to the floor (out of PICU) tomorrow! The best part?!? Julie and I can hold him now!

We are so indebted to everyone who has prayed and come by and brought us care packages and their love and hugs. Please continue to pray for Isaac's continued improvement and that we might find out what caused his lungs to get so messed up so fast.

Ventilator Be Gone!

It's funny how things can change quickly. I stayed up with Isaac most of last night. It was an up and down night, but they certainly made progress on turning down the ventilator. Then at 4:00, Julie relieved me so I could go get a little rest. Just 4 hours later she called me in the room saying "they're taking the ventilator out; come down here". By the time I got to his room, he was unplugged and flailing. He's now down to just a few IV's, a feeding tube, and some oxygen in his nose. It's amazing. He looks like our Isaac again. The breathing tube has inflamed his throat and airways, so he's extremely raspy and sounds like he needs to cough all the time. But they have breathing treatments and some steroids that can help with that. Meanwhile they tell us we'll get to hold him soon. The doctors are on rounds right now and we're up next so I'll post later with more info.

Thank you all for your incredible prayers and please continue to pray for his full recovery.

...Stop That Wiggling!...

So waking back up has it's side effects when you wake up to tubes into your mouth, nose, head, groin, legs and ... have a catheter in. Isaac has definitely made progress on his breathing today. The doctors have continued to reduce the amount they are helping him. There is a nice little graph that shows his breaths on a monitor. The straight line spikes up when there's an inhale and then dips down when there's an exhale. The green portion is the machine doing the work and the purple portion is him. Until today, it's been all green. Now, the very beginning portion of almost all his breaths is purple. So, his brain at least now knows to take a breath; he just needs the ventilator to do most of the work. That might sound bad, but it's definitely a progress. Like I alluded to above, as they've reduced his sedation, he has started to realize that there's a bunch of junk in him. So he get's kind of mad and starts kicking and grabbing. Enter his good friend Morphine. So, they work to balance reducing the sedation and getting him breathing with not getting too worked up. They now hope they can get him off the ventilator in 2 days.

On another note, with his improvements in his breathing and lungs, they were able to move him enough to do a spinal tap. He tested negative for bacterial meningitis (but he's been on antibiotics for that for 3 days now anyway, so that doesn't necessarily tell us anything). There are a few viruses they can check for in his spinal fluid. So we'll see what that says. Overall, a much better day than yesterday.

We continue to get tons of emails and voicemails from everyone. I think we've got at least 5 states praying for him, and it's made a huge difference. The doctor told us earlier that she was surprised we've made as much progress as we have. I'm sorry if we haven't had a chance to talk with everyone yet. Thank you all for your continued prayer.

Wiggling Again

We saw some slight improvement last night in his breathing so they were able to turn down his ventilator some. It was a small change, but the doctor felt like it was enough of a change to justify taking off the muscle blocker. Although it's a small improvement in breathing, it's making a big difference to Julie and I because he's no longer "paralyzed". And that means he's wiggling and kicking a little, especially when they do stuff to him or the blood pressure cuff fills up. And best of all, his eyes have peeked open a few times. I think his eyes opening have been more reflexes than consciousness, but we'll take it after 2 days of non-moving eyes closed Isaac.

They tell us that weaning him off the ventilator is an up and down process. He makes a little progress and they turn down the ventilator and see how he responds. If he doesn't respond well, then they turn it back up. They of course don't give a timeline for this, but they seem to acknowledge that it will at least take days.

We're waiting for the doctor and residents to do their rounds. We tend to be able to overhear a little more information during the rounds so we'll update again later.

Please continue to pray that his breathing progresses and he's able to come off the ventilator smoothly and soon. Thank you all and God bless.

Friday Evening Update

Today has been a day of status quo. It seems like the doctors and nurses have been focused on keeping Isaac's oxygen levels up and watching how he's doing with the ventilator. The cause of the lung disease is unknown. If it's a virus, there's nothing they can directly do about the virus except to make sure his body isn't stressed out about anything else (such as breathing) and he can focus on it. If it's a bacteria then they can treat it with antibiotics, which they've gone ahead and done just in case. But it sounds like we won't know for quite awhile. Virus cultures take 10 days or more to grow/show anything and they can't check for bacterial meningitis because they can't roll him on his back to do a spinal tap because of his lungs. So it will probably be awhile (if ever) before we get any answers on the cause.

The first day he also had trouble with his blood: clotting, low white blood cells, and low hemoglobins. So yesterday he got several blood products (FFP, cryo-precipitate, and a transfusion). But today his blood has looked okay so that's an improvement. He also physically looks a little better. He pretty quickly started swelling up and it was no time before he didn't really look like himself. He's always been this skinny baby, so it is so weird to see him all puffy. He's started shedding some fluid due to the lasiks so we look forward to him looking like himself again.

The next big hurdle is getting him off a ventilator and breathing on his own. He was close to having to move from the ventilator to an oscillator, but thankfully he never crossed the lines that would have necessitated that. As they can turn down the levels on the ventilator (the pressure and oxygen percentages they have to set) and he can maintain where he's at (they call these his "blood gases" which I think means his oxygen levels in his blood) then they can think about taking him off the muscle blocker, sedation, and and drugs that help with profusion. This is the path back to healthy lungs.

Last night and tonight, Julie and I were lucky enough to get a room in the Ronald McDonald Family Area here at CMH. It's like a tiny little hotel room and there are bathrooms with showers and a living room area. They assign the few rooms they have based on the seriousness of your child's condition and on how close you live to the hospital. Thankfully we've gotten rooms each night. It has been such a blessing to sleep in a bed and take showers and do our laundry within a 100 feet of Isaac. I know we'll be doing a lot more to support the Ronald McDonalds Houses after this and we encourage you to as well!

We've gotten tons of calls and emails. Thank you all for your prayers. We ask that you pray specifically for Isaac's lungs. That they would shed fluid and he would gain the strength to start breathing on his own again. Also, please pray for strength for Julie as well.

Let's Start at the Beginning

As it's pretty hard to keep everyone up-to-date, we thought we'd start posting updates on Isaac's condition in a place where everyone can check in and see how he's doing. Plus, we aren't allowed to use our phones in the hospital and as his room is "clean" (meaning we have to put on and take off gowns/masks/latex gloves everytime we enter or leave his room) it's pretty annoying to leave the room. So, I'd thought I'd start with the story of how we ended up where we are as we haven't gotten to talk with a lot of you yet.

We had a great Christmas. Got to see lots of family over the weekend. Isaac got tons of new toys, which is good because he's really interested in toys now. We came back to Olathe on Monday the 24th so we could go to our own church for Christmas Eve service and spend Christmas day at home. That was awesome. Christmas day was so wonderful... full of opening more presents on Christmas morning (Julie and I got him lots of books and alphabet blocks), napping, and playing. Wednesday at 4:00, Julie fed Isaac, changed a dirty diaper and laid a smiling, giggling baby down for a nap. We could tell from the monitor that he napped on and off for the next hour. About 5:00, I heard him grunting, which is normal when he's waking from a nap. But when I went to get him out of his crib. I found that he had spit up a mixture of milk & blood and that he was laboring very hard to breath. The next 15 to 20 minutes are pretty blurry. Julie frantically called 911 while I stayed with him, placed him on his side, and he continued to spit up the mixture and labor to breath. Thankfully, he never stopped breathing. I was terrified that I might have to give him CPR. But I know I could've done it as we took an Infant CPR class before he was born. If you are expecting a baby soon, I seriously encourage you to take Infant CPR classes. Even though I didn't have to do CPR, I felt more prepared for what to do in those terrifying 15 minutes until the ambulance arrived because of it. Anyway, the ambulance was there pronto and since we're so close to Olathe Medical Center, he was in the ER in no time. After a bit at OMC, a clear CT Scan and (as they told us then) OK chest X-rays, they transported him to Children's Mercy with no answers. Meanwhile, they sent us home to pack a bag and told us to meet them at CMH.

Once we arrived at CMH (just after 9:00), we checked in at the Pediatric ICU, spoke with the Chaplain (which is standard procedure) and waited for a long, dark, lonely hour for the doctor to come out and tell us what was going on. The CHM intensive care unit pediatrician (intensivist) doctor's assesment and more chest X-rays indicated that Isaac has a serious infection that at that point is focused in his lungs. They had to put him on a ventilator to keep him breathing and to keep the oxygen levels up. He's on a slew of meds and drips (sedative, pain meds, meds to help with circulation, antibiotics to treat "whatever" is causing this if it's bacteria, neuro-muscle blocker which paralyzes him so the ventilator can work well, and other intermittent stuff like vitamin K, lasiks to help with swelling and fluid in his lungs, etc.)

Since Wednesday night and because of the meds and breathing help, he has stabilized and according to the doctor this morning has kind of plateaued. He's not getting better yet, but he's not getting any worse either, which she is encouraged about. They seem to think it could take a few weeks for him to get well, and hope that he'll be able to breathe on his own within a few days. For now, we sit and watch our beautiful baby boy that just 2 days ago was giggling, opening presents, and cuddling our heads off.

We ask that you please pray for Isaac: that God, the Author of all life and specifically Isaac's life, would bring healing to his body, patience to his father, and strength to his mother. Thank you for your prayers.