(Originally published on 5/25/14 on cotaforjensh.com)
I'm on a break from being in room D944 this afternoon. I was thinking back to one of my favorite emails from Emily Huff. If you've been following along, you know how she is training for a marathon and running in honor of Jens (Read more here and here). One of my favorites was called “Two Are Better Than One.” In this writing, she talks about her friend and occasional running buddy, Elizabeth. Emily writes of her friend helping her finish the Portland marathon last year and the ways her friend always makes her a better and faster runner. This verse came to mind: “Two people are better off than one, for they can help each other succeed. If one person falls, the other can reach out and help. But someone who falls alone is in real trouble.” (Ecclesiastes 4:9-10, NLT)
Emily wrote:
As I ran, I thought about how this rings true for you that TWO ARE BETTER THAN ONE. It is so much better to go through something scary and risky when you have a hand to hold. It is so much better to run the race when you have someone who can run alongside you to encourage you and pace you and give you reason to carry on. It is so much better to have someone to cry with, to laugh with, to share the mystery of life with…
You both have each other in this. And that is so very very good. TWO ARE BETTER THAN ONE. I am giving thanks that God gave you to one another and that you all will be there for each other with the marathon ahead that sometimes may feel too long.
As I think back to the last few months and the last week, I've thought about how important this has been.
Two are better than one while sitting in hospital all day, waiting to hear if you're getting a lung transplant that day.
Two are better than one when you have to meet with the surgeons after the surgery.
Two are better than one to get through the 20 minutes of breathing on your own before they'll take the breathing tubes out of your mouth.
Two are better than one to see smiles and hear such grateful words after you've had a transplant.
Two are better than one when you have to move from the bed to the chair (and vice versa).
Two are better than one when you get to celebrate moving from the ICU to the step down unit.
Two are better than one while walking down the hall with chest tube drainage things, IV poles, and oxygen tanks.
Two are better than one to learn all of the pills you have to take after transplant.
Two are better than one when the hospital food isn't that appetizing, and you need a runner to go get something more palatable.
Two are better than one to watch your favorite TV show with you in the hospital.
Two are better than one to FaceTime with when you feel cooped up in your room.
Two are better than one to cheer you on when your cough is weak, your chest hurts, and to reach your incentive spirometer goals.
Two are better than one when you see a smile every time you reenter the hospital room and remember what this is all for.
Two are better than one to help you raise money months in advance of the transplant, so that when it happens, you don't have to worry about a thing.
Two are better than one to take care of your students to make sure they have an awesome end to their 2nd grade year.
Two are better than one to help you move, pack, load, unload, and find your way as you leave a town you love.
Two are better than one to pass the time waiting by exploring and discovering new things together in a city where you don't know anyone.
Two are better than one to pray for you, encourage you, support you, and cheer you on via emails, texts, calls, comments, care packages, cards, and more during the toughest battle.
Thank you for being part of our "two." We are so honored that you have come alongside of us during this journey.
(I'm having trouble including pictures on this post, so make sure you see them at www.facebook.com/lungs4jens.)
Sunday, May 25, 2014
Monday, May 19, 2014
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
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.
Thursday, May 1, 2014
Straws 4 Jens
(Originally published on 5/1/14 on cotaforjensh.com)
May is Cystic Fibrosis Awareness month. Many local Cystic Fibrosis Foundation chapters hold "Great Strides" walks and events this month to raise awareness and funds to help find a cure for CF. In honor of this, I thought I'd take a cue from one of our biggest fans, Emily Huff, who is training for a marathon in honor of Jens. On one of her runs, Emily ran part of the way while breathing through a straw to simulate how it feels for Jens to breathe.
I got a straw and headed out in our new neighborhood. At first, it was a little uncomfortable to hold the straw in my mouth. As I continued to walk, I found that I had no choice but to focus on my breathing. The straw was causing me to take shallower breaths as I went, so I had to come up with some sort of rhythm on my own.
The Monongahela River in our "backyard."
I probably walked a half mile in total. The most annoying part was all of my spit coming out of the straw. However, if you've been around Jens, you know that he too has a lot of sputum (spit/mucus) that he has to get out of his lungs at rest and especially with activity.
The hardest part was the finale, climbing the 19 steps to the apartment. I walked up them close to my normal pace, but I found I was VERY light-headed and felt flushed when I got to the top. I came inside, breathing very heavily, and used Jens's pulse-oximeter to measure my oxygen saturation. Jens does this frequently, and when he gets below 90, he knows he must go on some oxygen to get his levels back above 93.
You can see in the picture that my o2 saturation was 82. It took me a few minutes to recover to get it back into my normal high-90s. However, in those few minutes, my whole body was affected by the lack of oxygen I had. I felt lightheaded, my heart was beating faster, I was tired.
These are all things Jens experiences on a daily basis doing everyday things like fixing a bowl of cereal, getting dressed, and definitely walking up the stairs to the apartment.
In honor of CF Awareness and Jens, consider taking a walk or doing part of your exercise/work-out with a straw in your mouth. Don't be bashful! Rather, if someone asks, share Jens's story and help raise awareness. If you're brave enough, send us your picture & your story to put on the Facebook page.
Together, we can stand with the Cystic Fibrosis Foundation and researchers are working hard to help CF stand for "Cure Found."
http://www.cff.org/aboutCFFoundation/NewsEvents/5-1-CF-Awareness-Month.cfm
May is Cystic Fibrosis Awareness month. Many local Cystic Fibrosis Foundation chapters hold "Great Strides" walks and events this month to raise awareness and funds to help find a cure for CF. In honor of this, I thought I'd take a cue from one of our biggest fans, Emily Huff, who is training for a marathon in honor of Jens. On one of her runs, Emily ran part of the way while breathing through a straw to simulate how it feels for Jens to breathe.
I got a straw and headed out in our new neighborhood. At first, it was a little uncomfortable to hold the straw in my mouth. As I continued to walk, I found that I had no choice but to focus on my breathing. The straw was causing me to take shallower breaths as I went, so I had to come up with some sort of rhythm on my own.
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