Yes, we are joking, but the views are really nice. This room is facing west towards the mountains. The hospital tower next to us is blocking the downtown Denver high rise buildings; that might be the only downside to the near-perfect view. This room is also a tad bit bigger than the last one. Since we are going to be at this hospital so much over the years, we just thought it would be cool if we could reserve one in advance.
The Democratic National Convention is being held in downtown Denver this week. The benefit for us is that Josh is allowed to telecommute this week (too much traffic and potential chaos near his office). This was unforeseen timing, but a nice perk. They have amazing internet speeds at the hospital and a built-in desk in the room. He sits off to the side with his headphones attached and works away. When it is time for a break, it just makes the hospital stay so much easier with two of us to always watch Ella.
Ella did pretty well overnight. She only woke up 3-4 times, which is better than the last time she took steroids. Although they think that since only 12 hours had passed, the steroids did not have a chance to take full effect. We’re expecting that tonight might be a bit more restless, but hoping for the best.
When I ran errands yesterday, they decided to do another blood draw. They told me it was scheduled for 6pm, so I made sure I would be back by that time. Instead, they showed up at 5pm and Josh was left to support Ella through it on his own. And trust me, these episodes are really tough. Ella cries and screams her loudest, tries to break free, turns blue/purple with eyes darting around. The pulse oximeter alarm beeps from lack of oxygen and a high heart rate. Blow-by oxygen is a must for her. By the end, she is soaking wet from sweat. It requires 4 people to be successful. She is so strong that you need one person drawing the blood, one helper to hand things, one to just hold her, and me or Josh to console her and hold the blow-by oxygen. It is crazy and even if the episodes only last for 5 minutes, it feels like it is so much longer.
Apparently, the draw last night was another heel prick. This was the second heel prick for the day, same heel (the other foot had her IV with the go-go boot already). They were not successful getting it right away either, so they were having to prick more than once. Ella got so upset and so worked up. Heel pricks sound like a good idea because 1) they are less invasive and 2) Ella’s veins hardly cooperate for an arterial blood draw. But, the downside is that the blood can hemolyze which means that the hemoglobin has been liberated from the red blood cells. So, the red blood cells are destroyed in such a manner that hemoglobin is liberated into the medium in which the cells are suspended. This is the biggest risk with the heel or finger prick blood-drawing technique.
This is the second time that they have done a heel prick while we have been in-patient at the hospital and her blood hemolyzed, so none of the numbers we needed were available. Basically, it was all done in vain (no pun intended). This is why when we go to the outpatient lab, I always ask for an arterial blood draw, even though it is tricky. If we are going to put Ella through the trauma, I want to make sure that it is getting us the information that we need to manage her care. But since it took 4 painful episodes to get an IV the night before and the heel prick worked yesterday morning, they made the decision to heel prick. Yesterday’s episode just further confirmed that heel or finger pricks for Ella are not a good idea and we should avoid them.
The IV in Ella’s left foot decided to not be viable when the nurse flushed it this afternoon. So, they went ahead and took it out. Ella was glad to get her foot back albeit bruised. The one bummer: the nurse thought she held Ella’s foot long enough with sufficient pressure to stop the bleeding. She put on a band aid and left the room. Ella was crying, so I picked her up to console her. When I set her back in the bed, blood was everywhere! This is when it helps to have another person around. I yelled for Josh’s help, and he applied pressure to her foot with a paper towel, while I hit the call button and tried to prevent blood from getting all over our personal belongings! It ended up all over my shirt, the floor, her bed, her blanket, etc. Thankfully, I had an extra shirt handy and hydrogen peroxide is a fabulous chemical for the removal of blood on clothing!
Overall, Ella is heading the right direction but it is just slow. Last time, it does seem like she dried out quicker. So, I’m not sure. We are supposed to have a blood draw at 8:30am tomorrow morning and once those come back, we’ll see how she is doing from a dryness stand point. Her overall weight has decreased a little, but not significantly. Her urine output has picked up. Just her diapers from 11:45pm last night till 3:30pm have been 705 total. That is good considering that she intakes 800ccs of formula plus 240ccs of water each day. I think today was the first 24 hour period where her output was slightly negative (output a bit more than she took in). Plus, she seemed like she was feeling a little bit better than yesterday.
Her heart rate and saturation seem a little bit reduced while she is awake, but right now she is taking an afternoon snooze and she is 100% saturated and heart rate is 110. That is a huge change from a few days ago before we came to the hospital. It is also more like her baseline, but again, she is on 2 liters of oxygen.
Their thought, unless she does a major turn around, might be to leave her in the hospital until her day of surgery. Since they do not know if her increased dose of Bumex is enough to sustain her from a dryness standpoint and they want to make sure she is not compromised in anyway or starting to head in a bad direction, they feel it may be the safest option.
This means staying here for another week, and then wheeling her to the OR on Wednesday, Sept 3rd for her surgery and bronchoscopy. Following the surgery, she will likely need to stay for another week or so to recover. Thus, the light-hearted joke about a timeshare.
Back to being serious, we are still just waiting on Him. Slowly but surely, things are coming to fruition. He has confirmed that Ella needs surgery and that it needs to happen in Denver. Even though we do not enjoy living at the hospital, we agree that it is the best and safest option, especially with her upcoming surgery in 8 days. We’re asking Him to prepare Ella’s body for her surgery, for wisdom for all the doctors involved in her care now and at surgery, and for Him to prepare our hearts for the next couple of weeks.
I realize that the scripture below might seem long, but I think it truly gives encouragement and hope in these times.
2 Corinthians 1 (The Message: The Bible in Contemporary Language)
I, Paul, have been sent on a special mission by the Messiah, Jesus, planned by God himself. I write this to God’s congregation in Corinth, and to believers all over Achaia province. May all the gifts and benefits that come from God our Father and the Master, Jesus Christ, be yours! Timothy, someone you know and trust, joins me in this greeting.
All praise to the God and Father of our Master, Jesus the Messiah! Father of all mercy! God of all healing counsel! He comes alongside us when we go through hard times, and before you know it, he brings us alongside someone else who is going through hard times so that we can be there for that person just as God was there for us. We have plenty of hard times that come from following the Messiah, but no more so than the good times of his healing comfort—we get a full measure of that, too.
When we suffer for Jesus, it works out for your healing and salvation. If we are treated well, given a helping hand and encouraging word, that also works to your benefit, spurring you on, face forward, unflinching. Your hard times are also our hard times. When we see that you’re just as willing to endure the hard times as to enjoy the good times, we know you’re going to make it, no doubt about it.
We don’t want you in the dark, friends, about how hard it was when all this came down on us in Asia province. It was so bad we didn’t think we were going to make it. We felt like we’d been sent to death row, that it was all over for us. As it turned out, it was the best thing that could have happened. Instead of trusting in our own strength or wits to get out of it, we were forced to trust God totally—not a bad idea since he’s the God who raises the dead! And he did it, rescued us from certain doom. And he’ll do it again, rescuing us as many times as we need rescuing. You and your prayers are part of the rescue operation—I don’t want you in the dark about that either. I can see your faces even now, lifted in praise for God’s deliverance of us, a rescue in which your prayers played such a crucial part.
Now that the worst is over, we’re pleased we can report that we’ve come out of this with conscience and faith intact, and can face the world—and even more importantly, face you with our heads held high. But it wasn’t by any fancy footwork on our part. It was God who kept us focused on him, uncompromised. Don’t try to read between the lines or look for hidden meanings in this letter. We’re writing plain, unembellished truth, hoping that you’ll now see the whole picture as well as you’ve seen some of the details. We want you to be as proud of us as we are of you when we stand together before our Master Jesus.
