Sleeping Beauty

Posted Jun 16, 2011 5:50am

Sarah is sedated and sleeping peacefully for the first time in 2 weeks. It's a starting point. She will go in for her trach, a stomach tube, and her sinus surgery today- most likely this afternoon.

A bit of good news awaited me this morning as I arrived, she has tested negative for RSV. It is a nasty little virus that is often responsible for making kids pretty sick. Grae had it several years ago, and her little playmate was briefly hospitalized for it. If it had come back positive, she would have been off the transplant list until it cleared. There is another CF'er in the ICU awaiting a transplant who does have it, and will have to wait. So we'll rejoice in a small victory.

Sarah would be the first to point out that the other young woman is in worse shape, has a rarer blood type, and her parents have already lost her brother to CF. There is always someone who has a tougher path and it's important to keep that perspective. Sarah is in tough shape, but not without hope.

More later,
Tony

A bit more

Posted Jun 15, 2011 8:39pm

I can't begin to say thank you enough to everyone. The outpouring of support and love has been just wonderful. Many have asked what they can do to help us beyond messages and prayers.

The tough part is that this might only be the beginning. We could be in a holding pattern for weeks and then have the transplant, which is a whole new set of challenges where we will REALLY need all the help and support-- especially after weathering this current storm.

Just know it means the world to us to have such wonderfully caring friends and family. It is a testament to Sarah and how much she means to everyone. When we figure out where we are in this process and how we can use the help, we'll take you all up on the offer.

Thanks and much love,
Tony

Another Setback

Posted Jun 15, 2011 5:07pm

Things aren't going well. The doctors are concerned that she is too exhausted and just can't keep fighting on her own. She just keeps losing ground.

They have decided to intubate her in preperation for a tracheostomy. The trach will help her not have to be sedated for too long. While we know this is the next step in the progression of treatment to bridge her to the transplant, it is also the start of us being unable to communicate with her clearly. We all had to say 'goodbye' with the hope that we will see her again in a couple of days.

She is still fighting, but embracing the help of the machines to get her through this struggle. She welcomed the chance to let go of some of the stress and labor. She was positive and shared that if she doesn't come through her life has been a wonderful journey-- one that she hopes to continue if it is in the plan.

I don't want to paint a bleak picture, but she is running out of options to help her. The positive is that the doctors are still operating on the guiding purpose of getting her to the transplant. One doctor said they did a lung transplant last night of a different blood type-- had it been a match, it is likely this would have been a much different post.

Thanks for all your support. Sarah appreciates the postings, as do we.

More soon.

Tony

ICU Day 2

June 15th, 2011

I got up here at 4 to relieve my dad. Sarah had been asleep for a couple longer stretches through the night and that is good news. She has had almost 2 weeks without a good night's sleep and it has taken a toll.

The BiPAP machine is helping but she struggles not to fight it. It does the best work when she is asleep as it can take over for her completely. She woke shortly after 4 and wanted a break from it, so she went back on the standard oxygen mask. However, she can't relax because she is constantly worried she is not breathing enough (as has been the case several nights) and her oxygen levels will drop. Her levels seemed to be steady even without the BiPAP and when reassured she went back to sleep.

They are in now drawing blood (2nd time already this morning!) to see if her blood gasses have leveled out. Hopefully, we get some good news today.

Thanks for the lovely comments. I have passed a few along to help relax her anxious mind and they have helped. Sometimes when every breath is a chore and the world is needles, machines, and harsh lights a little love and reminder of life outside is great medicine itself.

Tony

Where to begin?

June 14th, 2011

We thought we might lose Sarah yesterday. We weren't too sure about today either. She is very ill. The last two weeks in the hospital have been a constant game of one step forward and two steps back. She has been unable to eat, unable to sleep, and unable to breathe-- not a sustainable combo.

Yesterday, they realized her CO2 levels in her blood were causing her severe headaches and the readings were very high. Not yet dangerously high, but trending that way. If they got much higher, her organs could begin to shut down. This morning those levels had increased further and they moved her to the ICU.

She is now on a BiPAP machine that helps her breathe. It basically acts the same as a ventilator without having to be intubated. This way when she is wearing it and especially when she sleeps it will do the work for her and continue to remove the CO2 from her blood. If all goes according to plan her levels will normalize by tomorrow.

She is additionally slated for surgery in one week to put in a feeding tube and clean out her sinuses. Part of this is pre-transplant and has been planned for a while. More on the tube later. The expectation now is that she will be in the hospital at a minimum until that surgery occurs.

She has been moved up on the transplant list. If the donor is a match for blood type and antibodies, she will go in immediately. It could be hours, days, weeks-- but it will likely be much sooner than we had initially anticipated.

Tomorrow we hope to have an idea of where we are headed. The doctors are positive about how she is doing. As they have said, on paper she is healthier than the day she was admitted.

I'll add more when I can, or if I think of more that I forgot to include. Just know that she is tough and fighting as much as she can-- but she is tired, very tired. Every breath is labor for her and she said sometimes she feels as if she is being suffocated. She has said she just doesn't know how much fight she has left in her. She needs this ICU visit to help and the machine to give her respite.

Send your love her way. She needs all the extra strength she can get. We will read your postings to her.

Tony

Straight Postin.

So, I have been unable to post here much as I have been using up my words on the Care Pages. Saran's goal was to share her journey through the transplant process, and document it in the hopes it would help others as well.

So I am going to cut-n-paste my posts from her Care Pages over to her blog to preserve the continuity of the narrative as we move to transplant. I'll try to keep the dates with the posts so they'll make sense.

Relationship With My Phone

I've been so busy posting updates to the Care Pages site, I've found little time to get additional thoughts down here-- but I'm going to try.

One of the interesting things I've discovered in the last two weeks is how much I love having my phone for updating the Care Pages, checking in with family who are at the hospital or keeping them updated when I'm the one sitting bedside. It allows us to instantly gather everyone when things go south, text and not disturb Saran while she sleeps, send emails to coordinate clergy visits, food drops, car and kid hand-offs, etc., etc., etc. The phone has so many uses and is so portable, I stopped bringing my backpack with my laptop and a book to the hospital, 'cause I never took them out. But,

I HATE MY PHONE. Everytime it rings, dings, or shakes, my stomach flip-flops. I need the news like the hit of drug, but I dread what it will say. Any unknown number or unexpected text could be salvation or damnation. I can't go to the bathroom or take a shower without checking the volume and setting it on the vanity. I pat my pocket constantly to make sure my phone is still there, then I pull it out to make sure I didn't miss a text or call. It is the last thing I look at before I close my eyes to sleep and the first thing I look at when I open my eyes in the morning. When I get the 20% low battery message, I panic and playing Angry Birds or surfing the web to pass the time feels like I am misusing my battery life. I am learning the dead-zones in the hospital, and I worry when I pass through them. I can't relax when little boy Bean wants to play games on it.

I can see why Sarah began to have the same relationship issues with her phone after she got the listing letter from Mayo. I can't begin to imagine how this process worked before we were this connected. I see the sign that says 'telephones' and points down the hall, and I thank the technology gods I don't have to walk down there to try and reach the house phone at my parents.

If you'll excuse me now, I have to check Facebook, text messages, missed calls, battery life, Care Pages, my todo lists and my emails. Now if someone will just create an app for the extra have cup of coffee I really need.

Osaru