Tuesday, July 28, 2009

From Ron:
It has been 24 hours and we continue to have trouble wrapping our minds around the concept that Elena has left us. Please bear with me as I try to explain some things about the arrangements.

After Elena passed we gave the doctors permission to study her case and to try and find out exactly what caused her death. If they can find out something that will save some other family from going through what we've gone through there will at least some reason for her passing that we can embrace.

Since the funeral home won't be receiving any flowers for us, it is not possible for flowers to be received or any place to leave them after the service. Given these difficult times there are so many worthwhile causes that could really use the money that would be spent on floral arrangement that it would be a real waste to send flowers for a one hour service. We are asking that in lieu of flowers donations should be made to ardsusa.org or any other appropriate charity.

We will have a celebration of her life on Friday at 1:00pm, followed by a catered meal, all taking place at Florida Bible Church (9300 Pembroke Road in Miramar - map here.

The service and the following celebration is open to all of Elena's friends and family. We are honored that there are several people from Kendal Regional Medical Center have expressed an interest in attending because they were so crucial in giving us the time that we had.

Monday, July 27, 2009

It is with deep sadness that we have to say that Elena passed away at 6:30 this afternoon. Elena was the brightest light in our family and we will miss her terribly.

We have appreciated all of the calls, thoughts and prayers during this time. But we ask for no calls for now. Arrangements are pending but we will post as we determine how to best honor and remember our little girl.

Sunday, July 26, 2009

July 26th

From Ron:
Apologies to everyone for the lack of information over the last few days.

In the form of an update we were finally able to move Elena to JMH Thursday night at 11:30pm. It ended up being a marathon day for all of us as we started at the hospital at 7:00am and didn't return home until 3:00am on Friday. While we were able to get a bed assigned we were unable to get a Doctor with admitting privileges that would agree to have Elena admitted. Mary made some calls and arranged for the transfer.

At the time of the transfer the ambulance was supposed to be equipped with all of the equipment needed to keep Elena stable. Once Elena was transfered to the ambulance they found that the ventilator couldn't handle her needs and they had to manually ventilate her for the 30 minutes it took to get her to JMH.

I'd like to comment on one of Elena's Doctors from Kendal Regional Hospital. His name is Jorge Yadskan and he is the Chief Intensivest. In the very early days we called him Doctor Doom. This was for two reasons, the first was because he was brutally honest at how low Elena's chances were, the other reason was because we couldn't pronounce his name. It became a term of endearment as we came to respect his medical skills and the respect he showed for us and Elena. No matter what happens I will always have a special place in my heart. Doctor Doom came in on his own time to supervise and accompany Elena during the transfer and he was the one who did most of the manual ventilation. This is about the most committed and dedicated healer I have ever seen or heard of.

When Elena arrived at JMH her numbers were actually better than when she left Kendal so we left for home.

On Friday we returned to JMH for the first visitation of the day at 11:30am. When we called the desk they asked if we could wait 20 minutes. That turned into 90 minutes when the nurse came out and escorted us in. Elena was in the worst condition she had been in since June 21st when she almost died. Her Doctors took the family aside and told us that she had very little time to live and that we should say our goodbye's. I don't think I need to explain how devastated we were but we made our calls and over 20 people showed up at the hospital.

In the early afternoon I started to see that Elena was improving all of her important numbers and by the end of the evening she was nearing her norm. By Saturday morning Elena was back at pre-move strength. Her sister Melissa arrived yesterday and I can tell you as a father what a comfort it is to have her here. It's now Sunday and she is holding her own. Melissa is spending the day with her and giving Laura and I a day to rest and get ready for tomorrow where we plan on meeting with her doctors to see if there is anything that can be done. She is still in extremely grave condition but if she can gain any strength there is still a chance that she may be able to get strong enough to go through one or another of the treatments that are available at JMH.

I'm sure that you will all understand how hard this is on all of us, and all of you that are following her progress. Regardless of what the Doc's say Elena is showing that she is not ready to leave us. Please keep praying.

The Walters

Thoughts from a big sister

I awoke this morning, and for a moment I hadn’t remembered what was going on. For that brief moment, all was right with the world. And then I opened my eyes and saw that I was in my dad’s house – in the bottom bed of my little brother’s bunk beds with his Spiderman clock above my head (which any other time would be comical). And for a moment, I was just here visiting. And then I really opened my eyes and saw a closet full of my sister’s clothes, and I remembered. I was immediately aware once more of why I’m here. And I cried.

Then I started to thumb through the clothes in that closet, and I saw clothes I recognized – not from seeing her wearing them in person, but seeing pictures she posted online that I viewed from afar. For as many years as I can remember, I have watched my sister live her life from miles away. And in that instant, it felt more wrong than I can even express. As I thumbed through the closet, I saw dresses she wore on a night out on the town and then there it was - the dress she wore for my wedding last summer, the last time we were all together, long before all of this started.

I don’t know how it feels as a parent to watch your child go through this, but I know as a big sister – someone who is supposed to have all the answers – there’s an overwhelming sense of helplessness. I’m the one who is supposed to have the advice and the answers. And right now I have none of either.

Wednesday, July 22, 2009

July 22nd

Elena was stable today, but we are still working hard to find a way to have her transferred to Jackson Memorial because they offer a different kind of ventilation. We're hoping for this to happen tomorrow. The staff at Kendall Regional has been amazing, but they have done all they can for our little girl.

July 21st

From Ron:

We had a slight improvement today. The Docs lowered Elena's PEEPS (the pressure that her air is delivered at) to 8. More important was that her saturation levels remained at 95+ for the entire day. This is the lowest that Elena's pressure has been since this started. This could be the break that she needs to build on. They are still discussing transferring her to Jackson Memorial Hospital where there is a different form of ventilation available.

Please continue to pray.

Monday, July 20, 2009

July 19th and 20th

No real update right now. Elena is stable and resting. We won't know the results of some of yesterday's procedures for a few days.

Saturday, July 18, 2009

July 18th - the one-month mark

From Ron:

Elena enjoyed a peaceful day today and after yesterdays events it was a well deserved day of rest for her and all those who love her.

Friday, July 17, 2009

July 17th

From Ron

This morning Elena was stable after yesterdays procedures. There was an issue with a blood infection and her inability to process the IV
nourishment she is receiving.

In the afternoon fluid had built up to the point that both of her lungs collapsed. Her Intensive Doc was able to quickly install two additional chest tubes, now there's a total of six, and Elena quickly recovered. I don't think I need to say that this is not good news. The problem is that while Elena is able to survive these episodes she is not healing. Our prayers need to be that her lungs need to start healing and they
need to start healing now.

Of interest is that two of Elena's Doc's attended a meeting at Jackson
Memorial Hospital on Thursday night. They learned that JMH has 60 cases in ICU with severe pulmonary issues, mostly from swine flu, most of the patients are under 40 years old and they expect that a third will not survive. So much for swine flu not being serious.

Please specifically pray that Elena's lungs will begin to heal

Thursday, July 16, 2009

July 16th = 4 weeks of hospitalization

From Ron:
If you've read yesterdays update, you know that Elena was finally scheduled for her trach and the removal of fluids around her heart.

After our arrival at the hospital, in the very early morning hours, they finally began a myriad of work on Elena at 2:00pm. The preparations were extremely impressive. They spent several hours trying to create as sterile an environment as possible, spilling out of Elena's room and taking over the hallway. There were close to 20 people involved in the process, all for our little Elena. The Herculean effort to make this easy on Elena is humbling to say the least.

They removed 150cc's of fluids from around Elena's heart, installed a tracheotomy, removed every line that had been installed for more than 3 days, and this included 4 chest tubes, several catheters and 4 IV lines. While under sedation they also did a visual inspection of her lungs as well as taking tissue samples to better understand where she is in the recovery process.

Everything went well and Elena was resting comfortably post op. We will not know any real results for at least 24 hours but the easing of pressure on her heart and more flexible airway options certainly can't hurt. This is potentially a start to recovery.

Thank you all for your continued support and thank God for her survival.

Wednesday, July 15, 2009

Mountains and Valleys

From Ron:

Charles Dickens summed up today when he wrote "These were the best of times, these were the worst of times".

Today, for the first time in 28 days, I looked into my daughters eyes and she looked back. She attempted to speak and raised her eye brows while trying to get a message across. It was truly an emotional moment, one that I will never forget as long as I live. Within an hour Elena's blood pressure rose to 193 over 113, her respiration became labored and she had to be heavily sedated with orders to return her to deeper sedation and keep her there. This is not good news but it tells us that she is in there with high level brain function and she is fighting and scared. I will tell you that as a father, or more apt a parent, it is the most helpless feeling in the world not to be able to do anything about it.

We now know that Elena has type A Influenza and test results from the State of Florida are pending for the Swine Flu. She is not doing extremely well and they will be removing fluid from around her heart tomorrow morning between 9:00am and Noon. At the same time they feel they must attempt to install the tracheotomy. Under normal circumstances neither of these procedures are especially life threatening but these are not normal circumstances. The procedures will have to be done in her room and during the trach she will be off the ventilator for several minutes.

*To everyone, please take a moment at 9:00am EDT to pray. Please pray for the Doctors, for Elena and for us. This is a big day and could easily determine the final outcome.*

With deepest humility I ask you to continue to pray,


July 14 = Day 26

From Ron:
Today started hard but ended up OK.

They were able to break Elena's fever from yesterday but in the process she paid a price. With the fear of infection so high the doctors started making changes in her antibiotics as well as removing the main line in her femoral artery. Elena would have great difficulty fighting anew infection at this time. This brought on a need for two additional IV's to handle the new medications. This morning they installed a new main line in her neck. At the same time they needed to take X-rays and run more tests. With all of the hands on treatment Elena began a downward cycle and her O2 saturation levels dropped down to the low 60's, the lowest they've been in a couple of weeks. This required they switch back to forced ventilation which stressed Elena even more. When they were finally able to let her rest her levels began to recover but were still below acceptable levels.

In the late afternoon her primary Doctor began working her ventilator and was able to put her back on volume ventilation and raise her O2 saturation back to 90. Because installing a tracheotomy will require taking her off of ventilation for a short period they are stalling this move as long as possible and it will now most likely happen in her room as opposed to the OR. We are hoping and praying that she will have a very peaceful and restful night and will get back on track with gaining the strength she needs to move forward.

There is no question that Elena is in there fighting hard. There is also no question that God is hard at work and your prayers are working so please keep them coming.

Monday, July 13, 2009

July 13 = Day 25

From Ron:
Todays surgery to install a tracheotomy was canceled by her pulmonary physician due to Elena having developed a fever this morning. As we know, fevers are the first indication that there is an infection and since the procedure is not immediately necessary the decision is to wait until Elena has the best chance for a good result.

The immunologist examined Elena and will be adjusting her antibiotics as well as removing a line from her inner thigh that is used to draw blood and was installed during the first week of her hospitalization. While this is a disappointment we've always been cautioned that this would be a roller coaster ride. Speaking for myself , I tend to get so hopeful when things go well that I forget just how sick Elena remains. We must all remain stead fast in our love and concern and continue to pray. This is hard on all of us who love her but she is in the hands of skilled medical people who, one and all, want to be there when we walk out with her.

In closing I would like to thank everyone for your support for Elena and her family and friends. This is something that is not easy to go through but is made so much easier with the high level of love and support that you all have given us. We thank you

Sunday, July 12, 2009

July 12th = Day 24

From Ron:

They will likely wait to install the tracheotomy until Monday.

I guess the easiest way to start this is that there were smiles a plenty in the ICU today. For the first time her doctors were stating she is doing much better, without adding that dreaded "/but/" to the end. Of course we all know that she is still very sick, and we all know that she is still weak and we all know there is always a possibility that something could change BUT the bottom line she is and looks stronger.

This is an appropriate time to comment on the staff at Kendall Regional. We've spoken about and seen the power of prayer. I will always believe that it was prayer that saved Elena to this point but at the same time God was there guiding the hands of all of the wonderful doctors, nurses and technicians who worked tirelessly around the clock. I have witnessed these people work for hours to change something one or two points. They are the best of the best and we will always remember all that they've done. All of these people have also joined us in our prayers because in spite of all of the science at work they believe in the power of prayer.

For now let's take Sunday to celebrate Elena's continued sojourn to recovery. Let's all join the doctors and nurses with a little smile for everything that has happened to bring us to this point.

Thank you all,
The Walters

Saturday, July 11, 2009

July 10th = Day 22

From Ron:

Elena has been on the ventilator for 21 days today. Sometime this weekend they will do a tracheotomy on Elena. This is being done to prevent or minimize damage to her vocal cords. It is also a small sign that she is improving. In fact Doctor Mengus, her Pulmonary Specialist, acknowledged that baring any major event she should recover. The hospital still lists her as critical but there is no doubt she is improving.

Let's celebrate this first sliver of good news while remaining vigilant with our prayers for her full recover. Her family thanks you all for your concern for her and for us.

Wednesday, July 8, 2009

July 8th = Day 20

From Ron:

All in all a good day.

You have probably noticed that we haven't been talking so much about O2 levels, O2 saturation and PEEP's. This is primarily because of the previously mentioned change from pressure respiration to volume respiration. While these numbers are still measured they aren't as critical as before. This afternoon they placed two more chest tubes in to drain the upper chest area. The results were immediate as lung functions improved and much of the swelling present this morning began to dissipate.

I am really reluctant to say that Elena's condition is improving but I think that is safe to say that she has made a slight turn toward improvement. The mere fact that Elena is still with us is a testament to everyone's prayers, and we must keep it coming.

Tuesday, July 7, 2009

July 7th = Day 19

From Ron:
Today was a good day. They have changed Elena's respiration from pressure to volume. Pressure is the method of last resort to save someones life. We've spoken before about how extended respiration by pressure is damaging to the lungs. Evidently volume is preferable as it is less damaging and requires work on Elena's part. More little pieces to the complex puzzle of her recovery but cause to celebrate in this moment at this time.

Thanks to everyone for your thoughts and prayers. Lets keep it up.

Monday, July 6, 2009

A note about the updates

I wanted to explain a little about how I had a post this morning with good news and then one this evening with more sobering thoughts. We take each bit of information as it comes, and I am working to share all of it with each of you who take time to follow this blog and Elena's progress. This is not a sprint - it's a marathon. Each step is a part of a much bigger puzzle. There are highs and lows and at this point we just have to pray for her to stay more towards the high than the low.

July 6th = Day 18

From Ron:

We now understand a little bit more about what Elena is facing in her recovery. She is now diagnosed with ARDS standing for Acute Respiratory Distress Syndrome. In essence her lungs, while clearing are severely damaged. One Doctor described them as two lumps of coal that need to be a fine membrane and it will be an extremely long recovery. You can learn a little more by visiting http://www.ardsusa.org. You'll find that just as we've stated, Elena's youth and good conditioning are her best allies in this fight.

She remains in critical condition but her organ functions such as kidneys and liver remain strong. It is a given that at some point she will receive a tracheotomy to maintain her airway, very likely within the next few days.

We are very pleased with Elena's progress but must caution ourselves and everyone else to keep in mind how critical her condition remains. Please continue to pray and ask everyone else to do the same.

A great update to start the week

Our girl is holding strong as we start the new week. She was taken out of the roto bed and is now in a regular bed. The left chest tube is almost ready to be removed and hopefully the right one follows soon. Once the tubes are out, they will hopefully lower the PEEPs again. She's holding her oxygen between 94 and 96 without the help of the bed, which is a big imprvement. They will likely wait for the vent to be down to 30% before removing the ventilator.

Saturday, July 4, 2009

Reflections from a big sister

As I update this blog each day, I have also been going through pictures thinking about my baby sister in that bed so far away. I thought I'd share a funny picture and story from my wedding last summer to give a little glimpse into this amazing spirit.

As anyone who has gotten married knows, you don't find out about a lot of the stories until you get the pictures back. When I was looking at the teasers our photographer posted, I came across the picture below:

I struggled to figure out who she was dancing with because the only people that wore tuxedos were the groomsmen, and this just didn't look like one of them. Turns out it was one of the waiters. I guess after several hours of a free-flowing open bar, Elena and some of my cousins grabbed waiters and made them dance. But I see that picture and think of the crazy, good-hearted, life-of-the-party woman my baby sister has grown into and it makes me smile. Ok - I admit, I am a little teary writing this. But then I remember the picture below from my polaroid guest book and I lighten up pretty quickly. Here is Elena and my cousins Meagan and Caitlin. I'm sure they'll all be thrilled to no end that I'm posting this for all the world to see.

July 4th = Day 16

Just a quick stat update today.

Saturation - 90%
Ventilator - 60% (this is a big deal - especially when combined with her sat level!)
Peeps - 17

Swelling is going way down and she's starting to look like herself again.

Friday, July 3, 2009

July 3rd = Day 15

Saturation: 99 (really good)
Ventilation: 70%
Peeps: 17

Her swelling is finally starting to go down as well. All good signs.

Change in visitation policy

Our entire family has been overwhelmed by the outpouring of support for Elena during this difficult time. Her room in the ICU is not very big and that is an almost constant stream of nurses and doctors caring for her at any given moment. We are so grateful for all of the people who have taken time to spend some time with her, but at this point we are going to have to ask that visitations be restricted to immediate family.

We are doing this because as her care continues, it is imperative that the nursing staff have the ability to do their job and have immediate access to our girl, and it can be difficult when there are multiple people in the room. The bed that she is in takes up most of the space, and navigating around it can be a bit of a challenge.

We ask that if you were thinking of making a visit to the hospital, you hold that visit until she is moved out of the ICU. We hope everyone understands and ask you to continue to pray and think good thoughts as we move through this process together.


Thursday, July 2, 2009

July 2nd = Day 14

From Ron:
I've come to accept that it is inevitable that with the good comes the bad and today we suffered a bit of a setback. After three straight days of good stable conditions tonight the doctors had to put two chest tubes in Elena.

This afternoon Elena's X Rays showed a buildup of fluids and air in her chest surrounding her lungs. This required the placement of two chest tubes to remove air and fluids that is in her chest cavity but outside of her lungs. It is not uncommon for people on ventilators for an extended period. If the air is left in the chest it can collapse her lungs, again something that happens frequently. Her other problem is that right now her lungs are not as pliable as a healthy persons so a collapse would be more difficult to reverse.

The procedure went well and the results were almost immediate. After a see-saw afternoon her O2 saturation returned to safe levels

This is not all that bad and not unexpected. In fact I signed the authorization 10 days ago so if it was necessary there would be no delay. Lets just continue to think good thoughts and pray for a better day tomorrow.

As her father I wanted to say a special thank you to those that have been there daily. First, Elena's Mama (Elena) and stepfather Vinnie have been there from day one and between them and Mary and I we keep each other updated as well as propped up.

Mike and his family, and I mean the entire family, from parents and grandmother, to aunts and uncles are a daily fixture at the hospital. Maria (Mikes Mom) somehow knows half the hospital staff and we get things done and good information through her grapevine.

Elena's high school bud Heather arrives like lunch at mid day EVERY day to talk with her and read from the bible. This is a high level of commitment and no words can express our appreciation.

Elena's sisters Melissa (our blogmaster) and Laura her bedside companion, have come to town to be with her. Having them here provides me a level of comfort that allows me to rest knowing they are there and Elena is not alone. Besides a father can never get enough time with is kids even if they are all grown up.

Finally Jenette and Clarisa ,whose names I've probably misspelled, along with Heather and Elena are the fabulous four. Friends for life and a day.

I can't do this without mentioning my great wife Mary who, as always, is my rock.Because of Frankie and his hectic schedule she doesn't get to come to the hospital as much as she wants to but just having her makes it better for me.

A note from Mike - Elena's boyfriend

Hello everyone. I'd like to thank everyone who is taking the time to read this. Thank you all so much for your prayers, love, compassion and for your words of encouragement. Prayer chains and well wishes have come from as far as Germany, Belgium, Spain, Italy, Canada, Switzerland and many US states including Michigan, North Carolina, New Mexico, California, New York, New Jersey and many more. I am truly overwhelmed. It is unbelievable that in a time as difficult as this, we have been shown the very best of the human spirit of caring and compassion. I am most excited to share this with Elena when she wakes up. I can't wait to see the smile on her face when she finds out how many people all around the world care for her and her well being! God knows if anyone in this world deserves it, it's her.

To say that Elena is an extraordinary woman is not nearly saying enough. And to those of you who don't know Elena in person, I hope you get the opportunity to meet her very soon. Just like they say about the seven wonders of the world, her smile is something you should be lucky enough to experience in person. I take comfort in knowing that thanks to Elena's strength, a very caring nursing and medical staff, and the will of God I will soon be able to look into her beautiful green eyes and tell her over and over again how much I love her.

And now I'd like to update all of you on her condition. Although we still have a ways to go, today was a good day and she made some significant improvements. Some of the parameters on her ventilator were reduced (this is a good thing). The bed is rotating a bit more frequently and she has been able to hold her oxygen saturation at a high level. Please keep praying and sending out love and positive energy. It's truly helping.

Numbers as of today's last visit.
Vent - 70%, PEEP - 17, Saturation - 96

MIKE (or as she calls me, Crinkle)

Wednesday, July 1, 2009

How we got here

From Ron:
Thanks to Melissa for creating this electronic method to keep all of Elena's family and friends updated daily on her progress. Most of you are familiar with how we've come to day 13 but for those that may have joined late here is a brief synopsis of what she and we have come through to get to this point.

Elena had a bad cold but was scheduled to go on a four day cruise with her boyfriend Mike and his family. They left on Friday and returned on Monday June 15th. During the cruise her cold got worse so when she returned she went straight to bed. By Wednesday she had not improved so she went to a two minute walk in clinic at a local Walgreen's Drug Store. /Bear with me as I tell you that you should make certain that you nor anyone you love should ever avail themselves of these "two minute clinics" for anything more critical than a hangnail or a flu shot./ She was told that she only had a cold and should go home and rest. No antibiotics, no prescriptions, just over the counter drugs and rest. By Thursday her condition was much worse so she went to a walk-in clinic with a real Doctor who examined her and recommended she go to the emergency room of a hospital.

Elena actually walked in to Kendal Regional Medical Center on Thursday afternoon. She was immediately diagnosed with pneumonia and admitted to the hospital. By midnight she was in ICU. Her ER Doctor stated that she was the "sickest person in the hospital". By Friday morning she was being ventilated and by Friday night she was fighting for her life.

By Sunday June 21st Elena's condition had gotten to the point where she was given the strongest antibiotic they had. She had an allergic reaction to the medicine and very nearly died.

For the last week we've ridden a roller coaster with her condition ebbing and flowing. For every high there was an equally dramatic decline. Now here we are at day 13 and her condition has been stable for three days. The largest event was when the hospital arranged for her to have a special bed that allows them to change her position 360 degrees. The bed made an almost immediate difference as she was now able to be face down, on either side and on her back without the severe jostling that would be required to move her manually.

She is very slowly improving and now her prognosis for recovery are good. As of this day and time she remains fully sedated and on a ventilator. This is not likely to change for at least another week. In the daily updates you will read of three things that we have learned to monitor.

O2 Saturation: This is how much oxygen is being absorbed by her system. The closer to 100% the better but preferably not under 85.

O2 Percentage: This is the level of oxygen being delivered to her by the ventilator. The lower below 100% the better.

PEEP: This is the pressure that the ventilator is delivering her breaths. Ideally the lower below 20 the better.

On day 13 at the end of her day her numbers were:

O2 Saturation 92; O2 Percentage 70%; PEEP 17

Please continue your prayers. Her medical staff assures us that they work and I have yet to meet anyone who works in the ICU that doesn't believe in God and the power of prayer. I find it amazing that people who see it all, all of the time and who are the best medically trained unanimously believe in the power of prayer.

I assure you that future updates will not be this long. I just felt this was a great opportunity to let anyone who visits to see what we've all been through for the last two weeks. There are no words that would adequately acknowledge the friends and family that have been there every day for Elena so all we can say is thank you.