LIFE ADVENTURES AND JOURNEYS Archives

The Roller Coaster

September 6, 2013 By Tam Warner 6 Comments

September 6, 2013

I have never liked roller coasters. Even as a kid, I stayed away from them, preferring the log ride or the ferris wheel. I do like excitement and adventure: seeing Great White Sharks, lions in trees, giraffes, penguins walking by me….but for me, that is not in the same league as the sickening roller coaster. I hate the severe ups and downs, side by sides, the gravity pull, the feeling of being totally out of control. I am on a roller coaster now.

This morning, Randy woke, he followed commands, they got him sitting up on the side of the bed. He knew me, and squeezed my hand, and looked into my eyes. My excitement was over the top. Rex was here this morning, and Randy’s brother Rexie has flown in from Chicago. I hoped they would take the ventilator out, but now I find out if they do so, it will be a few days. I just spoke with Dr. Kaza (and Randy has tremendous respect for her) with Ally and Wes so we could know the thinking of the transplant team. They want to play it safe, and keep Randy a transplant candidate as long as possible. ECMO has the potential to do that. Even with the ventilator in, he can begin to sit up, do a little exercise in bed, and that would be much safer, Dr Kaza says, than risking taking the ventilator out. The ECMO is doing all of the work of his lungs….they are estimating he has 5% or less of his lungs left which is not survivable. He is in better condition than many, many lung transplant patients, but when they put him on “air on demand” (kind of the way a scuba tank works) he breathes far too fast. It is better to let the ventilator breathe for him, she says, than to have him feel breathless and panicky. Okay, we understand that.

Of course, this is a huge let down….but that is the way every day has been since August 2. We hope and try to keep our spirits high…but there is always the down side. The only thing that is really going to help is lungs. O lungs. The most common blood type. Lungs. A pair of healthy lungs. That is our only hope, and every day that passes increases his odds for complications… Dr Kaza said that since he is a healthy guy (other than failed lungs) the goal is to keep him on the list. His score has dropped a little because he is on ECMO and the ventilator, but he is still high on the list. He has been here so long that the team knows him quite well, and they are searching for the right pair.

My friend Kim tells me Randy is now on the prayer list of the Dallas Cowboys…so many people have reached out or sent their best. It is so appreciated. It lifts our hearts. Click to Tweet.

We are still waiting on a miracle. Waiting for lungs, riding the roller coaster.

Cannula replacement, Exhaustion, and Hope

September 5, 2013 By Tam Warner 1 Comment

Yesterday was another day of high drama. Ally came up yesterday morning to work and be with me, and Dr Dimaio, the head surgeon for the transplant program at UT, came in to talk to us. He wanted to replace the cannula that is embedded in Randy’s vein, which takes the blood from his body and runs it through the ECMO machine, oxygenating his blood. Fortunately the surgery went well, and this morning Dr Kaza explained that they have set the ventilator lower, it is only at 10%, the goal is to remove the ventilator tomorrow and start doing some physical therapy with him prior to a lung transplant. No lungs suitable for Randy have appeared in the last 3 weeks. They also needed to make sure there was no brain damage….so they started slowly waking him to get him to respond to commands…and he did! He squeezed our hands, and wiggled his toes. He wasn’t responding at first, then I started talking loudly about the Great White Shark photo of me in National Geographic, and he started waking, enough to respond. I knew that would get him going. Ha! Randy LOVES those photos, and wants the film that Jero made of the event, maybe Rodrigo and Jero will give it as a get well gift?!

Obviously, I am feeling much better today. Yes, of course, I am still afraid, but I am less afraid. One of the nurses just told me she is confident he is going to make through this. The roller coaster of emotion I’m riding on is hopefully slowing….I just want him to get lungs so we can start rehabilitation….I know he will be devoted and conscientious of his recovery. I am going to start posting our Tanzania adventure from last summer….please enjoy that!

And as for all of you? Our friends and supporters:

“The making of friends who are real friends, is the best token we have of a man’s success in life.” –EE Hale

Randy is a true success, with so many who love him….as I always say, “everybody loves Randy!”

and to those we do not know but who have taken Randy into their hearts:

Hebrews 13:2

“Do not neglect to show hospitality to strangers, for thereby some have entertained angels unawares.”

You are all angels.

Day 4 on ECMO: waiting for lungs

September 3, 2013 By Tam Warner 3 Comments

Our family at our son's college graduation 2013 — Our family at our son’s college graduation 2013

UPDATE: My children have talked me into going out to dinner with them tonight.

Day 4 on ECMO, September 3. Alexandra is working from the hospital, as am I. At least, I am trying. Looking at essays, making sure my students know their due dates. I will be working with them online pretty much from here on out….Randy is waiting on lungs, and when they come, I will need to be here even more, assisting with recovery. I am staying on top of the students….many of them late with essays. But what else is new? So far they are at least writing. I’ve been getting a bit of grief from my daughter about being here all day. I come up about 9a, leave around 8p or so. She thinks I should not be sitting “vigil”. However, it is not a vigil, I want to be here with Randy because that is how we roll. I know that my voice and presence is known to him even though he is completely sedated, I know he hears the voices of his children when they visit. I spoke with one of my favorite docs on Randy’s team, he has kind and soulful eyes, and he says Randy is strong and ready for lungs. They just need the lungs. As I have said before, the pulmonary group/transplant team here at UT Southwestern is wonderful….the nurses are so kind. Randy has two nurses watching all of his vitals, blood tests, breaths, 24/7. They love my Great white shark adventure, and they actually found the photo on National Geographic. Rodrigo entered it in the photo contest 2011 and 2012. So I’ll publish it here for fun. http://ngm.nationalgeographic.com/ngm/photo-contest/2011/entries/95503/view/?fb_action_ids=10201209954749272&fb_action_types=og.likes&fb_source=other_multiline&action_object_map=%7B%2210201209954749272%22%3A10150380843109201%7D&action_type_map=%7B%2210201209954749272%22%3A%22og.likes%22%7D&action_ref_map=%5B%5D Randy LOVES telling that story, and shows everyone he meets the photos. They are calling me Shark Girl around here now.

I meet so many people: I met a couple yesterday whose father received lungs Friday night, a 70 year old professor, and he is doing very well. Then there is Mary, who is here every day with me, her husband had a lung transplant a year ago, at age 69, and has been in and out of the hospital ever since. His kidneys have failed, his heart is bad….she sits here, or with him, every day. She is such a nice woman. There is the young woman who has a dad here who had a heart transplant that did not go well….there are heart transplant and lung transplant patients on the floor who are out of ICU and walking around, recovering. There are a million stories here.

Just made my rounds…what are my rounds? They consist of going to see Randy, and eavesdropping on as many doctor (especially surgeons) as possible. Today they changed a couple of settings for Randy and I heard the surgeon say, “it’s good to avoid complications in advance”. His settings have further improved his stats. I have my yoga mat for the bad moments…the moments when the fear overwhelms me, when I cannot breathe. Forward fold, eagle, pigeon…..all good for relaxation. I also do balancing poses. Keep the fear at bay and be happy and chipper for Randy.

Again, no matter what you believe in, don’t believe in, doubt, say a prayer, send a positive thought or some healing energy. Atheist, agnostic, catholic, protestant, jew, muslim, yogi….we are all one. Sending out positivity cannot hurt.

Stable, still waiting for lungs

September 2, 2013 By Tam Warner Leave a Comment

Today was Randy’s 2nd day on ECMO and ventilator. This morning he was trying to wake up, and breathe on his own. The doctors decided they would prefer him calm, and let the machine do the work. He was working against the machine, and his oxygen saturation was suffering because of it. His numbers are good, his labs are good, he is ready for lungs. The team who surrounds him …. they are nothing short of incredible. He went into the hospital just a little over a month ago, and everyone at UT Southwestern has been caring and extremely competent. When he went into distress on Friday, every team member was there from the transplant team, and the critical pulmonary care doctors. Their decision to put Ran on ECMO and a ventilator was made in order to avoid having to do it in an emergency situation. His lungs were failing, they knew how hard he was struggling to breathe, so they decided to “bridge” into transplant. I am still optimistic….Randy is strong, everything is functioning perfectly…except his lungs. Tomorrow is Randy’s birthday….so all I want for his birthday is two pink healthy lungs. If he can just get the organs….I know he would get through the recovery. Every day, though, becomes more nerve wracking as we wait. He is type 0, the most common blood type…. I don’t wish harm on anyone….but I want Randy to live. I am so appreciative that everyone is praying, sending energy and love and positive thoughts. Surely, with so much hope and love coming his way, organs will come in for him. I carry my phone everywhere….even into the bathroom…I sleep with it at my ear….I am waiting for the call, the call that a match has been found. What a birthday gift it would be for him to get lungs tomorrow! They have to come soon.

ECMO and a Ventilator

September 1, 2013 By Tam Warner 8 Comments

The last couple of days have been so unbelievable that I truly am in an alternate universe. The day before yesterday Randy’s numbers plummeted, and they decided that ECMO would be the best way to go to “bridge” Randy to transplant. The ECMO is taking the place, basically, of the lungs as far as oxygenating Randy’s body. It was all so scary, Randy’s brother had flown in the day before, and Randy’s dad came in just as the episode began. Everyone tells me that these people are miracle makers…all we need are lungs to have a miracle. Tomorrow is Randy’s birthday, and I want him to have lungs tomorrow, so he can take a nice deep breath. I know the road from transplant is hard, but we are up to it, and Randy is so strong and such a perfectionist he would be a UT Southwestern Lung Transplant poster boy. We just need the lungs.

He was wakeful when I went in this morning….but he is being given medications so he will not remember any of this….when he wakes up with lungs he will be surprised at how much time has passed. I do believe he heard my voice, our usual, “good morning my darling” cheerful greeting. I told him he was doing great, his SATs are good, his labs are good….he just needs to keep it up until the lungs come. I was twenty when we met….married at 21, and we have grown up together, more or less….whatever has happened, good or bad, we have been together through it. Even when we’ve been mad at each other, it is only the other one who can truly give us comfort. Does that make sense? We are two pieces of the same two piece puzzle. I pray, I beg, I ask the universe, for lungs, and to bless the donor.

“The Waiting is the Hardest Part”

August 29, 2013 By Tam Warner 6 Comments

Tom Petty is correct: “The waiting is the hardest part.” Randy is feeling very tired, and he is on a “bipap”, sort of a cpap with 100% oxygen to help him not work so hard to breathe. He told me today he was worn out and didn’t want anyone but Ally, Wes, Rex (his dad) and I to visit now. He needs his lungs soon.

Every day that goes by without lungs I worry more….they just have to get lungs soon. He’s first on the list, and O, the most common blood type. Soon, soon, soon. A friend today reminded me of a favorite saying from the Talmud: one who saves a life saves an entire world. It is why we are organ donors, right? If I die in an accident, perhaps a part of me will save someone else. I would want it that way. And I want Randy’s life to continue with me, with our children, our family…oh yes, Tom Petty, you are so right, waiting is the hardest part.

Randy’s spirits and optimism are intact…he is so ready, he wants it done now. They don’t want him up and walking anymore…he needs to conserve the strength he has. He will do some exercise in bed, but not a whole lot. The Lung Transplant Coordinator told me today that he is still strong, still in good shape, his body has not deteriorated yet…so that is good. We just need the new lungs. He has lost about 25 pounds….his body is working so hard to breathe it is burning calories at a fast rate. Yes, I do worry. I am trying to empty my mind, to rest, to sleep. A long road stretches ahead of us.

I worry so much about Ally and Wes. I know what this is like…having a daddy who is ill, living with the fear of it on a daily basis. The reality of this is still so “out there”….how can something like this be happening? So much of this reminds me…but the good thing is that Randy is strong, this happened so fast he is not debilitated like my father was….and lung transplant was not an option for my father. For myself, this is just beyond comprehension. How do I feel? Optimistic, yes, because he just has to be ok. It is NOT his time, it isn’t. I miss him, yes. Scared? Yes. Upset? Yes. Hungry? Definitely.

Whatever you believe, or don’t believe, no matter what religion you are or aren’t, say a little prayer, or send healing energy Randy’s way or light a candle for him. Please.

LIFE ADVENTURES AND JOURNEYS

Hebrews 13:2

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