A Wild Weekend

(Originally published on 4/2/14 on cotaforjensh.com)

Over the past year, Jens has been prescribed steroids more often than in the past to help fight infections. The increased steroid use can lead to issues with bone strength. He had a procedure on Friday to help strengthen his bones before transplant. The options were to get a once yearly injection of a medicine called "Reclast," or take pills every few days. Since Jens will have a crazy pill regimen after transplant, we opted for the one injection. One of the side effects is flu-like symptoms, but to lessen the severity and chance of it, we decided to have it infused over one hour.

A few hours after the procedure, Jens started feeling a little weak. After his last treatment was over at 1 AM, his chest was aching. This made it very hard for him to breathe. He told me that he felt like he couldn't take a deep breath. I knew something was wrong because Jens isn't even able to take the same "deep breaths" that you and I know. I have heard someone compare a CF patient's breathing to a normal person breathing through a straw. 

We stuck to the recommended Tylenol schedule and he drank lots of water. However, the pain worsened, and when the alarm went off at 5:30 AM for his hourly water intake, he took his pulse. It was an alarming 190+, and his O2 saturation percentage was 77. (His heart rate is usually in the 100-110 range, and the O2 saturation should stay above 90.)

We rushed to the ER, and they took him straight back. There were more medical staff members in the room than I've ever seen, causing me to have to step outside as they began treatment. They eventually lowered his HR to the 140-150 range, while he was on a high-flow oxygen mask.

We then went to the Medical ICU floor, where they started a bi-pap machine to help force positive oxygen into his lungs. He was on this machine for a few hours, eventually helping his HR back to its normal range in the low 100s.

At that point, it was close to 1 PM, and he was worn out! His body had been working at a higher rate for at least 9 hours, if not more! He felt achy, especially in his chest area, but he was able to come off of the bi-pap machine, taking oxygen in through his typical nasal canula.

He stayed in the hospital until Monday afternoon/evening. I'll spare you all the details of the "not-so excellent care" that we received on Sunday and Monday, with messed up medicine and breathing treatment schedules. ("Excellent care" is a goal that the staff at VUMC writes on your board in your room.)

  We knew things were better when Jens wanted to take a funny picture to put on the blog!

We are glad to be home, as we are spending each night packing a different room or cleaning out a different space in our apartments. I am teaching through next Friday, if all of the paperwork goes through as planned (fingers crossed we don't have any bumps there!). 

So many of you continue to ask what you can do to help. 

1. We appreciate your prayers. You can also pray for my students, as this is tough on their 7-8 year old hearts too. Big thanks to the 2nd grade team and my school's office staff for all of their help! 

2. I hope to put together some sort of "sign up" to help us come load boxes into the moving truck, etc. Nashville & Pittsburgh people- look out! 

3. We are hoping to have some sort of "send off" next weekend in Nashville at the park where we can just give hugs before we go. We have both lived her over 10 years now, and we hold our friendships here close to our hearts. 

As always, if you're not keeping up with the Facebook page, you're missing the more immediate updates. You can "like" Lungs 4 Jens on Facebook to have the updates come on your News Feed. Or, you can just go to www.facebook.com/lungs4jens just like you would any other webpage. 

We are looking forward to "Eat the Fridge/Freezer" week to be done, so that we can eat at all of our favorite Nashville restaurants next week before we go! 

Abby & Jens