Monday, December 9, 2013

The scariest day ever

This is going to be a long one. You may need to grab a coffee. Or take a break midway through. I don't even know where to start. We had the biggest scare ever with Blake on Saturday. Biggest in that, we didn't know if he was going to make it. He got really sick, really fast. It was terrible. Here's a timeline of how this came to be:

Thursday: Happy Blake. Playing and active. Jumping on the bed. Wreaking havoc to the Christmas tree with Bowen. Me feeling so happy at his progress.

Thursday night/Friday morning: I check on him a couple times during the middle of the night and notice he doesn't have a ton of pee. I automatically worry.

Friday morning 6:30 AM: I call our kidney doctor and express my concern over the lack of urine. He notes that Blake was a little dehydrated on Tuesday and since he had puked a few times, that's probably all it was.

Friday 7:00 AM: Blake gets a fever of 101.3. I report this to the doctor.
Friday 8:45 AM: Labs taken in Des Moines.
Friday throughout the day: I work really hard at getting Blake hydrated, running him on slow feeds through his feeding tube. Trying to avoid any puking. There's still not a lot of urine and his fever is down.

Friday afternoon: I haven't yet heard the results of the labs we had drawn. After taking his blood pressure a few times, I'm getting concerned that his heart rate is pretty high (160s). I think his heart is working way too hard and I think his belly is getting distended. With the low urine output and distended belly I immediately panic that he has another urine leak and that's what's going on.

Friday 4:00 PM: I call urology and express my concern. Again, I'm told that he is probably just dehydrated and he doesn't need to be seen. After hanging up the phone, my stomach is in knots.

Friday 4:30 PM: I get a call from our kidney doctor that said they got Blake's lab results back and his white blood cell count was 1.8. The conversation went like this:
Doc: Blake's WBC count is 1.8.
Me: 1.8 what? (This was very low compared to normal). What does that mean?
Doc: It means he could be septic.
Me: What does that mean exactly?
Doc: It means he could get really sick quickly and we need you to come to Iowa City now.
I immediately get worried. I start packing, blinking back tears the entire time. Tears because I hate leaving home. Tears because I just thought, here we go again.

Friday 7:30 PM-3:00 AM: We get to UIHC and report to the regular floor. They put in an IV. Order an ultrasound. Order a CT scan. Do vitals. Culture his blood. Culture his urine. All of that sort of stuff. Listen to results, expecting there to be a lot of fluid in his belly. There isn't. The doctors don't seem to understand what is going on. His heart rate continues to go up and is now in the 180s. The doctor tells me he wants to move Blake to ICU. I immediately agree.

Saturday 3:30 AM: In the PICU. They have now ordered an x-ray to look at his chest. His temp has spiked to 104.2. 

Saturday 6:00 AM: The PICU doctor tells me that she thinks Blake needs to be sedated and have a breathing tube put down his throat and take out and replace one of his drains that is infected. He does indeed have a blood infection. She says this is a very risky procedure and they were unsure of how his body would react to having a breathing tube. I call Aaron and have the doctor explain all of this to him. He heads down right away. The breathing tube goes in ok. His blood pressure drops, but they bring it back up with meds. They get the central lines put in. 

Saturday 9:00AM-1:00 PM: This is a total blur. I have no idea what happened at what time. I just know that Blake started to get really bad, really fast. Thankfully, we had two nurses that actually do dialysis and knew Blake. They never left the room. Blake's blood pressure started to drop and they were right on top of it telling the doctors.

He was on three different meds to keep his blood pressure up and in stable range (top number 80-90). They kept increasing the dosage and nothing was working. They should have helped immediately. They weren't doing anything. Blake's color was very gray and his feet and hands were freezing.

At some point, Aaron asked the doctor, “This is really bad isn't it?”
She said, “I honestly don't know if he will make it through this.”

I will never forget that moment as long as I live. My heart just sank. I thought I was going to be sick. Aaron and I just cried. It was the most helpless feeling in the whole entire world.

They did an EKG to check his heart. Aaron and I were right there by the bed holding his hand and talking to him. I kept whispering in his ear, “You keep fighting Blake. Do you hear me? I love you and you need to keep fighting. You can do this.”

You know it's never a good sign when three of your doctors have tears in their eyes. Or your dialysis nurse is hugging you and crying. That's what scared me the most. They told us they would do everything that they could and I told them, “If anybody can get through this, it's Blake.”

The PICU doctor had actually prepared us that he would have to go on ECMO, which is basically life support that does the work for your heart and lungs. That was the last ditch effort for Blake. They moved him two doors down in the PICU. He was so bad and so fragile they didn't feel that he could be moved all the way to the OR. 

We sat there and just prayed. I couldn't stop thinking about Jenna, Brody and Bowen. I kept thinking that nothing could happen to Blake because he completes our family. And he has already made it so far. 

Long story short, for whatever reason, they sent a probe down his throat to check his heart one more time and it was just a little bit better. The team decided that they would cut his abdomen open to try to relieve the pressure that was continuing to build in there, hoping that this gave his heart and lungs some reprieve. They did it and they almost instantly saw his blood pressure come up!

In the end, they decided they could avoid ECMO. That was such good news. By the time they let us in to see him, he was pink in color again. It was such a relief to see him that way.

Currently, his abdomen is still open (there's gauze covering it) and he is sedated and medicinally paralyzed. They are starting him on dialysis because his kidney isn't producing enough pee. This is not uncommon at all considering the trauma it went through. As of now, the doctors aren't concerned that the kidney won't bounce back. 

A huge, huge thank you to all of you that were sending up prayers on Saturday on our behalf. If you thought it was weird I was posting things to Facebook, I just thought if people knew, they could pray. I bet you God was pretty overwhelmed by all the Blake prayers. 

It's going to be a long road to recovery. LONG. The poor kid has been through hell and back. The thing is, I don't care how many tubes he has in. He is here. Praise the Lord, he is still here. And that's is what ultimately matters, but that's just the way I see it.


Kate Princehouse said...

*Tears* We about lost Alex once, coming off the vent...he wasn't ready. I can only imagine the terror/fear/pain/heartache you must have felt for hours! Thank you for blogging and allowing so many to share in this journey with you, Blake and your family. Always thinking of/praying for you, Jamie. I just know this is all someday going to be bad memories- but the "now" is also shaping the character of the big boy Blake will become. And I know "strong" and "resilient" will continue to be ways we define this very tough little guy.
Sending love. Katie

Virginia Klingenberg said...

I can't tell you how thankful I am that God took a little time to respond to this little boys needs! Your family has been an inspiration to me to carry on and I am grateful! Blake and all of you will remain on my prayer list each and every day and I'm hoping this summer you and Aaron can teach him to maybe throw a ball. Hugs and kisses to you! Ginger

Stephanie Powell-Reeves said...

Thank you for sharing Blake's story. I have been/still am, in deep and constant prayer for you all. I have faith and see that you do too. All it takes is a mustard seed size of it. So Blake is covered in it!! God bless him, while he HEALS! Amen!

Jill Dillon said...

I am a kidney donor and have been following Blake's story since I "met" his donor Steph in a Living Donors Online group. I was praying for Blake when all of this was happening. Such great relief to know he pulled through. What a strong little guy!! I will keep praying!!

Unknown said...

Thank you for shareing! I have been praying a lot from Saturday on. I am a friend of Steph S.'s and live close to UIHC. Please let me know if you could ever use something!

Bodie said...

Dear lord Jamie, bless your heart, I am bawling as I read this to Jared, you are amazing!! Stay strong and Mr. Blake you keep fighting, you can't give up now! you are going to have one strong little boy! Love you and continue to pray! I know none for this is fair but hopefully in the near future this will all be a distant memory. The Bodammers

Marcia said...

I am in tears as I write this....I am so sorry for all that little Blake and your family has gone through. But I am so thankful that prayers were answered on Saturday and Blake once again made it through a very hard time! Be assured that we continue to pray....

Angelic Mom said...

"God's healing light and Angel hugs to all of you. May the love of all our prayers support Blake for the greatest good, though all of time and space. Bring a miracle Lord. AMEN"

You don't know me, but I am touched by your blog post and called to pray.
Maria Peth

Elena Adams said...

Touched deep. I felt as if you are expressing my feelings.I went through same condition when my mom was admitted for the same reason. She is fine now and BLAKE will soon get up and will make you all smile with his childish acts.

Stay blessed kid!!!!

Mindy said...

I think I first started following you on Instagram during his hospitalization that followed this. I had never seen your blog and am combing the archives now. What a scary, scary day. I'm crying, And I already know the outcome is good. I can't imagine your fear that day.