LUNGS 4 Jens!

(Originally published on 5/19/14 on cotaforjensh.com)

As you probably know by now, Jens got new lungs this past weekend! I have my iPad with me at the hospital, but it is difficult to update the blog from there. The most up-to-date news, info, and pictures will be on the Lungs 4 Jens Facebook page. (The 140-character version is also on Twitter.) If you have a FB account, you can "like" Lungs 4 Jens." If you do not, just click on this link to see it as you would any other webpage.

I will detail the events of the past few days at some point, but I just wanted to give an update for today:

Jens was not able to sleep well last night, due to the amount of activity and "tending" to him in the CTICU (Cardiothoracic Intensive Care Unit). Despite his extreme fatigue, he has continued to be polite to the medical staff and to me. Every time I come in the room, he says something like, "It's so good to see you, Abby." He is also very appreciative of the care he's getting from the official medical staff and the "family doctor," his Björn. (Björn is not Jens's doctor, but he does a fantastic job of asking good questions, giving great advice on how to talk with the medical staff, and being an all-around encourager to his brother.)

Early this morning, the surgical team decided it would be okay to take 2 of the 5 chest tubes out, since they saw steady progress in the 24 hours since the surgery ended. In addition today, Jens also got the central line in his neck removed, his catheter taken out, his port accessed, and moved to the "step down unit"- also known as 9-D around UPMC!

He had some swelling today before he left the CTICU, which is a result of some air in his body. This can happen with the removal of the chest tubes, so it will probably delay the removal of the other 3. Jens was very worried when I noticed that the right side of his face had become swollen. This was the first set back, so he had gotten used to the "smooth sailing" he's had thus far. The doctors in the ICU were responsive immediately, and said that swelling like this can occur. The swelling should decrease with time.

His feeding tube is in the process of coming out as I type. (I'm at home taking a break.) He has been looking forward to this since yesterday when they removed the breathing tube, as he has not been able to have any liquids. His mouth is extremely dry, and this and the tiredness are his biggest complaints at the moment.

Everyone is very pleased with his progress so far, as is Jens. Today I've heard less of "What should I be doing?" as any time he is not being attended to by medical staff, his eyes have almost instantly shut. Dr. Pilewski made a good point that being on the floor will help, as it is calmer, and he has a window, which will help his body adjust with day and night. He is still showing determination by doing his treatments, taking deep breaths, and being compliant to everything asked of him.

Jens practicing deep breaths on the "incentive spirometer" earlier in the CTICU today (The "goal" has already been raised again to 1250!) 

Next steps include getting him up and walking more and more (although this will be limited as long as he has the chest tubes in, as he has "baggage" with those), continuing to wean him off of the oxygen (he's been on 1-2 liters), and continuing to expand the lungs through the use of the incentive spirometer. Jens has not taken a FULL breath yet, as he has to continue to condition his new lungs to do this. Jens is literally learning to breathe again. He is very motivated by this little machine, as it gives him good feedback as he goes for another important goal. 

I am doing very well. Thinking back, I haven't really been worried. I found a lot of peace in reading and rereading Romans 8 the past few days. As far as energy, yesterday, I ran (with a few hours sleep while he was in surgery) on the excitement and adrenaline of his great progress. Today he is sleepy, so we are trying to be quiet instead of interacting with him. Naturally, we become more sleepy sitting. I often find myself when I go out for lunch or come home for the night having things I want to turn and say to Jens or text to him. It's just different when your best buddy is not around. He was so sweet to me before the surgery, as he left me a little note to help get me through. 

Yesterday, he would not let anyone else in the CTICU room until I got there once he was awake because he wanted to see me first. He is so polite and appreciative, and he says such nice things. I think it's his way of showing how grateful he is for his new lungs and his new freedom to breathe! 

Thank you so much for all of the prayers, texts, calls, messages, and "likes" on Facebook. I have read many of them to Jens (whether he was fully awake or not...), but it will be fun to go back through all of this with him on the other side of recovery. At no point in this have we felt alone, and it makes us very happy to have so many on our side to share this wonderful joy. 

My last quick thought is from Emily Huff (running the marathon for Jens). She subscribes to daily emails that quote Henri Nouwen. This is the email she received yesterday: 

The Breath of God Within Us 
When we speak about the Holy Spirit, we speak about the breath of God, breathing in us. The Greek word for "spirit" is pneuma, which means "breath." We are seldom aware of our breathing. It is so essential for life that we only think about it when something is wrong with it. 

The Spirit of God is like our breath. God's spirit is more intimate to us than we are to ourselves. We might not often be aware of it, but without it we cannot live a "spiritual life." It is the Holy Spirit of God who prays in us, who offers us the gifts of love, forgiveness, kindness, goodness, gentleness, peace, and joy. It is the Holy Spirit who offers us the life that death cannot destroy. Let us always pray: "Come, Holy Spirit, come." -Henri Nouwen