Saturday, August 11, 2007

Scrapbook Reminder and Deadline Extension

Hello Everyone,

The original deadline of the scrapbook is fast approaching! I had hoped to have everyone turn in their submissions by August 8. However, I understand that it might have been difficult for some people to start working on a scrapbook piece immediately. I had also hoped to e-mail out a reminder earlier, but things got hectic.

We are extending the deadline to the end of August. Please turn in your submissions via e-mail to myself at rathachan@gmail.com or Dre at akochenderfer@gmail.com. You may also mail your submissions to me at the following address:

Ratha Chan
138 Echo Ave. Apt. A
Oakland, CA 94611

If you have any further questions, please do not hesitate to ask.

Thank you!
Ratha and Dre

Wednesday, July 11, 2007

Obituary

(e-mail from B. Parady)

Sabina Beata Paradi
April 23, 1983 – June 30, 2007

Resident of Danville

Beloved daughter of Bodo and Shelly, and caring sister of Miklos. She was the cherished granddaughter of Charles and Ruby Moore, and Charlotte Parady.

Sabina brought life and light to the many people that she touched with her excitement for life, and endless kindness. She was born in Berkeley California, attended Dorris-Eaton School in Walnut Creek, was graduated from Bentley School in Lafayette. Sabina was graduated from the University of California, Berkeley with a BS degree in Dietetics from the Nutrition Science & Toxicology Department. She completed a one year internship at New York Presbyterian Hospital/Columbia University & Cornell University. Sabina was awarded a fellowship in Nutrition Science at New York Presbyterian Hospital/Columbia University Morgan Stanley Children’s Hospital. Her first love had become the treatment and caring of children. Sabina enjoyed the outdoors and hiked, skied and snowboarded. She was an avid traveler, having enjoyed travel in various European countries. She came to love the opera and theater. Central in her life was the love of God which she projected to all that knew her. She was baptized at Messiah Lutheran Church in Danville, and found comfort with the congregation of Apostle’s Church in Manhattan.

Friends and family are invited to attend her funeral service on Saturday July 14, 2007 at 10:30 at Messiah Lutheran Church at 2305 Camino Tassajara in Danville, http://www.messiahlutherandanville.com/. Burial follows at District Cemetery, 3285 Mt Diablo Blvd in Lafayette.

In lieu of flowers the family requests donations to either HealthPartners Research Foundation for research to Reduce Medical Errors through Data Mining, Contributions, Mail Stop: 21111R, 8170 33rd Avenue South, P.O. Box 1524, Minneapolis, MN 55440-1524, http://www.hprf.org/docs/home.html or The Institute for Healthcare Improvement, IHI, Attention: Contributions, 20 University Rd., Cambridge, MA 02138, http://www.ihi.org/IHI/About/Donors.

Sunday, July 8, 2007

Minor Change to Memorial Schedule

(e-mail from B. Parady)

There is a minor schedule change in the funeral. After the church service, which begins at 10:30 (no change), there will be a meal at the church. After the meal, the burial service in Lafayette will be held.

Friday, July 6, 2007

Memorial Services

Dear Friends,

Our beloved friend Sabina Paradi passed away at 3:45 pm on July 30, 18 weeks after the accident that left her in a coma and changed our lives forever.

There will be memorial services among all those who love her, in two cities she called home during her short but wonderful 24 years.

CALIFORNIA Saturday, July 14 at 10:30 am
Messiah Lutheran Church
2305 Camino Tassajara
Danville, CA 94526
(925) 736-2270

NEW YORK Sunday, July 15 at 2:00 pm
Doubletree Hotel Metro Ballroom
51st Street and Lexington Avenue
Services with Apostles Church

Thank you so very much for the love and support you showed Sabina, her family, and her friends during these long weeks.

Though she has passed, there are still so many things left to do. Please forward this message to anyone you feel would like to attend the services, and please continue to pray for her family that they might find strength and meaning during this time.

Some of her friends are also collecting letters, stories, pictures, and other items for a "memory book" of Sabina to present to her family by August 8. If you have anything you would like to share or have questions on the book, please feel free to contact Ratha (rathachan@gmail.com) or Dre (akochenderfer@gmail.com).

Also, if you have not done so already, please consider donating to help cover some of the tremendous costs associated with her treatment and funeral arrangements. You may do so at either service, or right now by clicking on the PayPal button on the right side of the screen.

Please don't hesitate to send any questions to hopeforsabina@gmail.com.

Thanks again, so much, for helping during these difficult weeks and for celebrating with us the person she was and always will be.

Tuesday, July 3, 2007

Updated Service Informatoin

(e-mail from B. Parady)

At this time the funeral plans are for services:

Day: Saturday
Date: July 14
Time: 10:30 am

Place:

Messiah Lutheran Church
2305 Camino Tassajara
Danville, CA 94526
(925) 736-2270

Arrangements:

Burial and graveside services afterward followed by a luncheon meal at the church.

Memorial Service in NYC

(e-mail from Susan Marshall)

Friends of Sabina,

i talked with kenny from sabina's church today and he emailed me with the date and time of the memorial service for sabina here in NYC. So if you guys could help spread the word to her other friends whose contact info i might not have, i would really appreciate it. thanks!

Love Always, Susan

----

Apostles Church will host a:

MEMORIAL SERVICE FOR SABINA PARADI
Sunday, July 15th, 2:00 PM
Doubletree Hotel Metro Ballroom
51st Street and Lexington Avenue

All are welcome to attend.

Monday, July 2, 2007

Sabina Paradi: Services

(e-mail from B. Parady)

Pastor Ledic of Messiah Lutheran Church, Sabina's church here in Danville, and I are in accord with setting Saturday, July 14 as the date for her funeral services.

The church website is:

http://www.messiahlutherandanville.com/

As things become firmed, exact details will be sent out.

My prayer of thanks for Sabina's healing with her heavenly Father. I pray for the comfort of all who grieve the loss of Sabina.

"In a moment, in the twinkling of an eye, at the last trump: for the trumpet shall sound, and the dead shall be raised incorruptible, and we shall be changed." 1 Corinthians 15:52

***HELP OUT!!!***

(e-mail from Ratha and Dre)

Dear Friends of Sabina,

I know that many of us are keeping Sabina's family in our thoughts and prayers, offering them words of comfort and strength as they go through this very difficult time.

Dre and I thought it would be a great idea to put together a scrapbook of our memories of Sabina for Sabina's family. There are so many moments and memories that we all have with Sabina. It would be great for them to know how we will always remember her.

We hope that each and every one of you will participate in this effort and share with Sabina's family how you will remember her and what our fondest memories of her are (you know, especially the silly ones =D).

We are hoping that everyone will make a page for the scrapbook. It can contain pictures, a letter to her family, memories, anything. It's your page, a way you will remember Sabina and how you want to let her parents know you'll remember her.

The page can range from 8x10 to 12x12 (but no bigger than 12x12 please). The page can either be done electronically and e-mailed to me at rathachan@gmail.com or Dre at akochenderfer@gmail.com (word document please, or PDF), or as a hard copy and mailed to me at the following address:

Ratha Chan
138 Echo Ave. Apt. A
Oakland, CA 94611

We are hoping to complete the scrapbook by the end of summer, which will require that everyone get in their contribution by August 8, 2007 (8/8/07-- easy for people to remember). That gives you about a month. Please let us know if you are getting this message late and need more time.

We hope that you choose to contribute. Please let everyone know about this memory book and pass this e-mail along to as many people as possible.

Thanks in advance,
Ratha and Dre

Saturday, June 30, 2007

Sabina Paradi

(e-mail from B. Parady)

Let us celebrate the short and wonderful life of Sabina Paradi. Sabina passed away today at 3:45 pm at Columbia Presbyterian Hospital in New York.

My prayers are to commend her wonderful soul to the Lord, and comfort for her mother's inconsolable loss. The Lord's blessings to all who prayed for her, and those who cared for her.

Friday, June 29, 2007

Sabina is in Comfort Care

(e-mail from B. Parady)

Just a note that Sabina is now in comfort care, which is similar to hospice care. Feel free to visit, but there will be no updates on her condition, and there is no indication how long she will be there.

The location is 8-154 in Milstein.

Update on Sabina

(from J. Song)

Dear Friends,

The latest word from New York is that Sabina has been taken off the ventilator and moved from the neuro ICU to a regular room. She will still be given medication to control storming to ensure comfort, and she will continue to be fed. However, no steps will be taken to fight infections, nor will any steps be taken to actively save her life.

At this time, let us pray for His unconditional healing or for Him to take her home. Let us also pray for her family, that they might find comfort in Him during this time, and for her friends, who would be so much less without her.

And though this is a difficult period, let's keep in mind that she has survived so much already, that each and every day has been a small miracle. Let us praise Him for what He has done and what He will do.

Thursday, June 28, 2007

Sabina: Last Message

(e-mail from B. Parady)

There will be no more messages regarding Sabina. There will be an announcement when there is finality.

Morning, June 28

(e-mail from B. Parady)

Not a good night. She had a storm through most of it running to over 103 fever and they had a hard time bringing it down. We thought that the storms had decreased in intensity and frequency, only to be hit with this.

She is starting TPN feed this morning. They were going to send her to Helen Hayes tomorrow but with all that is going on, she may never go into rehab.

I pray that Sabina is comfortable, recovers, gains her health, and Shelly and I remain strong in the face of difficult times.

Evening, June 27

(e-mail from B. Parady)

An uneventful day. No storms, Two BMs in spite of not being fed for 4 days. I had long long discussions with the GI team to get on it. The nurse Tom, did a great job in slow feeding Sabina contrast media through the day to prepare her for the late evening CAT scan of her gut.

The GI guy grudgingly admitted that stubborn constipation may be at the root this evening before the testing. The two BMs sort of put an exclamation point on it. We shall see. I got them to ready TPN in case we need to feed her depending on what they find.

I have her looking at the TV with Animal Planet. Her eyes move slightly side to side , but only operate in the left 45 degrees. She can only barely go right of center. So no Helen Hayes until they get the young lady to digest.

My prayers are for Sabina to endure all the hardship facing her to gain her health and begin rehab. Prayers for her mother to gain the strength to endure.

Wednesday, June 27, 2007

Morning, June 27

(e-mail from B. Parady)

Overnight Sabina had two BMs, even though she has not been fed for days. It would seem that she is very stopped up from meds. They are doing a GI series this morning as I type. The docs have a peculiar way of testing and testing and then saying, "can't see anything". We shall see. Vitals are fine.

Time to press the limits of my spirit, and extend hope where there is none. I have complete faith in God and where He is guiding me. Whether He heals Sabina on this earth or heaven is His to work. I fight despondency, and frustration. Most of all we fight the idea that we are putting Sabina through a process that will not lead anywhere in terms of a meaningful recovery.

Sabina is struggling for life, not having taken food for 4 days. We question the ability of anyone to recover from Sabina's injury to any meaningful level. So far, Shelly has only seen fractional recoveries from similar injuries, and parents who are despondent over finding a way forward for their loved ones. Given the robustness of Sabina's life to this point makes it difficult to see a point in taking her to some minimal recovery.

These are the times of enduring hardship. The quote for today is from Romans 8:5-6, "Those who live according to the sinful nature have their minds set on what nature desires; but those who in accordance with the Spirit have their minds set on what the Spirit desires. The mind of the sinful man is death, but the mind controlled by the Spirit is life and peace."

My prayers for Sabina and God's healing, on earth or heaven, and for Shelly's comfort.

Tuesday, June 26, 2007

Evening, June 26

(e-mail from B. Parady)

Waiting to go to Helen Hayes.

Sabina's condition is quite stable and she is almost weaned off the respirator. She is having digestive problems and has not gotten nutrition in three days. They are planning to do a full GI tomorrow.

In my view she is able to track better than ever. Her eyes move from side to side though they seem largely stuck to the right. They do move and now dart. She seems to have lost her facial expressiveness. I cannot tell if we are losing or gaining.

My prayers are for Sabina to be able to gain enough of a recovery to be meaningful, and for her mother to find strength.

Monday, June 25, 2007

Evening, June 25

(e-mail from B. Parady)

Kind of hard to explain the day and its goings on, so I won't.

Sabina had a storm last night, caught very quickly. First storm in 4 days. She was stabilized during the day. She has had no food in two days and cannot pass anything from her stomach.

The word from Mayer is that he wants to try aggressive rehab at Helen Hayes for a while and if that does not work he will bring her back for further examination. Bottom line the procedure that he proposed, he backed away from, saying that there is progress shown in successive CAT scans, so slow is better and will track progress at HHH. If it does not improve, we are back to
square one, and Columbia.

My prayers are for Sabina to make continued progress, and for Shelly who has to take on a herculian task for 2 months at Helen Hayes.

Sunday, June 24, 2007

Evening, June 24

(e-mail from B. Parady)

Stable day. Heart rate 105+, temp 100+. Fourth day no storms. Eyes open, no tracking. Lots of mouth motion and some yawning.

Talked to Mayer, and he showed us the CAT scans, and suggested a procedure that he seems to have sort of a patent on, a sump shunt because of the expanded ventricle. Something to consider.

My prayers are for Sabina to get God's healing and comfort.

Saturday, June 23, 2007

Evening, June 23

(e-mail from B. Parady)

No real change in her condition. Temperature at 100.9 almost all day. Pulse 100+. She stays in ICU as long as she fevers. They are working to wean her off the respirator and she is breathing deeply to compensate for her dependency.

Her neurological condition is unchanged. She stares and does not respond. We spend the days talking to her and reading to her.

Our prayers continue for God's healing of Sabina.

Friday, June 22, 2007

Evening, June 22

(e-mail from B. Parady)

Another day with no storms. The meds have not changed. The nurse says maybe the storms are over. Let's hope and pray for her comfort. Sabina had a slight fever all day, between 100 to 100.8, and pulse was between 100 and 120. She has new braces for her feet and hands that seem to be uncurling her. She does not seem as reactive to touch nor to manipulation as in the past. She is much less reactive at the brainstem level, which is a good thing.

She opened her eyes again for long periods. It is a stare or glare, but not focused or coordinated. She is still not tracking noticeably, not a good neurological sign. She may have smiled once, brought cheer to me, though it may be ephemeral.

At this point we are not encouraged that there will be a meaningful recovery. We are awaiting the return of Dr Mayer to have his review of Sabina's prognosis. He was the most optimistic of all of them here, and he is the chief after all. We seek some ray of reasonable hope that she is neurologically alive.

For those interested, here are some references on her current condition:

(1) http://www.medscape.com/viewarticle/503854
(2) http://www.mayoclinicproceedings.com/inside.asp?AID=986&UID=
(3) http://books.google.com/books?id=M3ynlxvhv9EC&pg=PA57&lpg=PA57&dq=%22meaningful+recovery%22+coma&source=web&ots=rngkwGowfD&sig=7rRHl318zVfbdhVPrjrggo39xB0
(4) http://www.sptimes.com/2004/06/27/Floridian/From_tragedy__beauty.shtml

Sabina had visitors from her local church group in New York.

We continue to pray for Sabina's healing from the Lord. My thanks to all of you for your prayer and support.

Thursday, June 21, 2007

Evening, June 21

(e-mail from B. Parady)

Basically a day without storms nor tendency to storming. Sabina would open her eyes wide and seem to be attentive though not track for the most part. I thought that I caught her smiling at one point. I spent a lot of time with her face to face. Her heart rate was around 120 with a 100+ temperature. Both tapered toward the end of the day. She is on a 40 ml/hr feed of 2cal/ml, so things stabilized after last night's CAT scan which for all the fuss was totally negative. The installed her brand new splints to combat the curling of her feet and arms.

Basically a stable day. The hope has been for some neurological progress which there has not been anything significant for a while. The picture painted by the doctors for a recovery is not a good one, being poor.

The word is that transfer to Helen Hayes is imminent, but date is unknown. We do not remain optimistic that rehab at Helen Hayes will be very productive.

At this point it is hope against hope. Our prayers are for Sabina to stay healthy, build strength and improve her interaction with her surroundings.

Wednesday, June 20, 2007

Evening, June 20

(e-mail from B. Parady)

Not such a great day for Sabina. Had a couple of storms. At times felt like she might be responding to me. The later storm seemed to be harking back to when we could not stop them. Her abdominal CAT scan was clear, with no issues so she is being fed again.

We discussed Sabina's prognosis again. She is tentatively scheduled to go back to Helen Hayes this Friday or Monday if they get her stable.

Shelly and I visited the Brady Institute, a facility for TBI that we felt was barely adequate. It was quite distressing to see them warehouse patients that could not be rehabbed by letting them sit in the hallway to give them more stimulation so to speak. The whole area of coma stimulation is kind of difficult to deal with, and has uncertain outcomes. We were given a very slim percentage for a meaningful recovery for Sabina by the NYP doctors.

I personally am not sure how long this all can be kept up, in managing Sabina's storms. As I said earlier, this may be impossible to unwind the heavy narcotics, and the storms in turn, may get a lot worse if the narcotics cannot be tapered. The doctor said it would take over 6 months to remove all the narcotics.

I am praying for Sabina, and for whatever healing the Lord has in store for her.

Tuesday, June 19, 2007

Evening, June 19

(e-mail from B. Parady)

This was an uneventful day. No storms all day long. Not much activity either, opened her eyes for a long period.

We had a neuropsychologist from the Brady Institute at Jamaica hospital in Queens visit to evaluate possibilities for recovery using coma stimulation. He and his assistant spent over half an hour with Sabina. Sabina did have three small storms last night but as I said nothing in the day.

She is currently being prepared for a cat scan of her abdomen to find out what the source of obstruction is so that she can start to feed. They are going to give her contrast media since she vomited bile last night. Rehab came by and is adjusting her splints to try to get her limbs in shape.

So my prayer is for Sabina's recovery to a functioning, active life.

Monday, June 18, 2007

Quote from the Back Flap of a Letter 6.28.04

"A possibility was born the day you were born, and it will live as long as you live."

                ~ R. Burak

I posted this quote, which I think is relevant in context of Mr. Parady's last update. But let us continue to pray wholeheartedly that she be returned to us fully so she may realize every possibility she can ever dream of.

Evening, June 18

(e-mail from B. Parady)

Another evening on the long course. Sabina had a day without storming and had a little storm late today, not much of one really. She did vomit, but had a lot of stuff in her stomach. Shelly started crying and bawling when that happened. Talked to the nurse and it is not much of a big deal.

I saw Sabina today and she cried a bit as we talked. There is a there there. It will take time to bring back what resources are there and we must be patient.

I talked to her surgeon, Dr. Sander Connolly and he is encouraged to see her improvement. Apparently they dialed up her shunt and things got a bit better over the last couple of days. He did acknowledge the fact that Sabina had been in narcotics withdrawal which is the other dimension to the storms.

So I pray for Sabina's continued good care and improvement. I pray for her mother to show her mother's love of the new Sabina, whatever she may be.

I talked to Sabina's pastor in California and we belong to a strongly pro-life church where she was baptized. His view is that to support life at all levels, you need to be with people at all stages of life no matter what their condition or prospect. He assured me of the strong support of the church members through her life, whatever it will be as long as it is in reach of the church.

I offer my prayer to all those in nursing homes who are alone and without friends and relatives. You may want to look to yourself and ask as I am doing: What are you doing for those alone and isolated? That is a concrete way to show your love for Sabina.

Prayer from a Friend

(e-mail from Philip Wilson)

Dearest Paradi Family,

My name is Philip Wilson and I was a resident at Westminster House along with Sabina at UC Berkeley. In that time I was able to get to know her from a distance, and her sweet disposition was evident to all around her. Her gentleness shone like a diamond in dazzling sunlight, and her words always carried a kindness and dignity that I truly admired.

My prayers are with you in this difficult time, dearest brothers and sisters in Christ. I believe in miracles, and know that our Mighty Heavenly Father is watching over Sabina and caring for her. I am thrilled to read reports that Sabina is on the road (albeit a bumpy one) to recovery.

Dear Jesus, Divine Physician and Healer of the Sick, we turn to You in this time of illness. O dearest comforter of the troubled, alleviate our worry and sorrow with Your gentle love, and grant us the grace and strength to accept this burden.

Dear God, we place our worries in Your hands. We place dear Sabina under Your care and humbly ask that You restore Your servant to health again.

Above all, grant us the grace to acknowledge You and to know that whatsoever You do, You do for the love of us.

Amen.

I pray the grace of our Lord Jesus and the Fellowship of the Holy Spirit be with you. I and my family send you our love and our promise to keep you in our prayers.


With love,

Philip Wilson

Sunday, June 17, 2007

From the Front of a Card Dated 5.21.05

To know someone
with whom you can feel
there is understanding
in spite of distances
or thoughts unexpressed...


                                       That can make
                                 this life a garden.

                    - Goethe

Evening, June 17

(e-mail from B. Parady)

This was the best day in a long time in terms of Sabina's storms. We only had one during the day, a mild one, and there were some short ones at night. She had all afternoon of wakefulness, with no tracking, but with some expressiveness.

We are still battling a poor prognosis based on the lack of reaction at this time in her recovery. More review is being undertaken. The storms should start to taper off in the next month.

My prayers are for Sabina to have a recovery that brings happiness and vitality to her life again.

Saturday, June 16, 2007

Evening, June 16

(e-mail from B. Parady)

As far as Sabina's condition goes today, my view is that she had a pretty good day, and would call it improving. Shelly might disagree, calling some active periods storming, whereas I would not.

Basically the day started with getting more of her fentanyl and being taken off the respirator from last night to 3pm today when she stormed and had to be put back. There are two views of the respirator and storming relationship, one is that she got tired off the respirator and needed to be back on, the other is that storming made her tired and needed to be put back on. She stormed a couple of times for brief periods and the staff was quickly on it.

We are in a bit of a vicious cycle. The more we try to cut back on sedation, the more storming and the more sedation. We have a tricky titration here. Sabina's attentiveness was very good in my mind, but Shelly called some of it storming. Clearly we are heading into a difficult period. Shelly feels that we need to end Sabina's suffering. I still harbor a divergent view.

My prayers are for Sabina to take hold of her recovery, and for strength for Shelly to support Sabina's fight for life.

More Pics of Sabina

More pictures, courtesy of Clare Robinson, one of Sabina's good friends from New York. They show the more convivial side of Sabina:




Friday, June 15, 2007

Evening, June 15

(e-mail from B. Parady)

The word for the day is opioids. The doctors, nurses and I had some long conversations today about all of this. Bottom line, the increase in storm activity could be and is likely to be related to sharp decreases in doses of Fentanyl and related opiods. There were sharp drops both after bone flap replacement and a week ago or so.

What does this all mean? For one it can mean an altered and perhaps more optimistic prognosis. For another, it charts a course to both manage the storms, and get her back to rehab. Basically the opioids make Sabina more sensitive to storms, since withdrawal mimics storms to a significant degree. It also explains the mechanism of why opioids modulate storms. Two nurses thought independently that this looked like drug withdrawal. One nurse expected storms for perhaps another 50 days.

She had one storm early and one late today, both stanched by Fentanyl.

So, my optimism returns a bit, and I am encouraging the staff to see her through the storms and manage her fentanyl much more closely. Amazing how this sort of thing can slip through.

So, my prayers for Sabina to recover and make progress in measurable ways.

Pictures of Sabina

Thanks to Angeline from Apostles Church in New York for these pictures, taken during lunch at their Apple Picking outing last October.























Thursday, June 14, 2007

Evening, June 14

(e-mail from B. Parady)

So far a fairly constant day. She had a storm that was suppressed with sedative. She has been comfortable almost all day. The one storm that she had was caused by too much activity from the therapist. She appeared even under sedation, to be reactive.

Hope is still alive. This article was found that dispels the notion that storms are a final prognosis. Katelyn starts out having leukemia, but it really is about operation induced storms from brain surgery:

http://www.stjude.org/leukemia/0,2530,422_2282_9247,00.html.

I am asking the doctors to review the literature on the baclofen pump to see if we can apply it to Sabina's condition. The pump has been used to stop storms on onset.

Shelly and I have started to look at long-term therapy such as Kentfield in Marin county, California.

So my prayers are for Sabina's recovery and persistence in treatment, and for faith and hope.

Message of Hope

(e-mail from B. Parady)

Oh boy, finally some good news. The current cycle of storms that had us all worried for the worst, appears to have been broken according to the nurse. They applied propofol last evening and Sabina is resting easily after the propofol was withdrawn.

Lots to still worry about, but a small message of hope.

We pray that hope sustains Sabina, and us in our prayers for her.

Morning, June 14

(e-mail from B. Parady)

Yesterday was uneven, with milder storms throughout. At the end of the day Sabina was sedated and seemed relaxed and comfortable.

They did a spinal tap and CAT scan, with the indication that there is still pressure, trying to ascertain the source of it. She had one storm last night. Have not found how it went.

Joon sent me this quote, that Sabina sent to him during a difficult period of his life: "Now faith is the substance of all things hopeful, the evidence of things unseen." - Hebrews 11:1 *

While it is hard to maintain hope, I dedicate my hopes to Sabina and her constant hopefulness that sustained many around her.

I pray for the Lord to sustain my hope for Sabina's recovery and protection. I pray for the vision and wisdom to carry my hopes for Sabina to successful resolution. I pray for Sabina's health and recuperation. Sabina's stabilization is our prayer for the moment.

-------

* Correction from Joon: I read my Bible again, and discovered (gasp!) that I made a typo. The correct verse is "Now faith is the substance of all things hoped for, the evidence of things unseen." It is, however, still from Hebrews 11:1!

Wednesday, June 13, 2007

Prayer

(e-mail from B. Parady)

Time to offer some prayers for Sabina.

First and foremost, I would pray for a miracle to bring Sabina to a complete recovery.

Next, the prayer is for Sabina to find comfort through her distress.

Finally, I pray for the love of the Lord for Sabina and to bring her healing for the body and the soul.

Lord, give me and her mother strength and love.

Morning, June 13

(e-mail from B. Parady)

I am coming to a very difficult point in Sabina's progress.

As you can imagine, it is difficult sleeping at night. What I am missing is hope at this point. The meeting yesterday with the doctors left me with no hope but a long, quiet say in a nursing home for Sabina.

Her temp is 106 and not controllable. She has been storming all night long, and horribly contorted. Her kidneys are shut down. They are looking for clots, doing spinal tap, cat scans.

I think Sabina's time is short.

Tuesday, June 12, 2007

Evening, June 12

(e-mail from B. Parady)

Not the best of days, not the worst of days.The biggest bugbear these days is the lack of overall progress over time. This was emphasized in the meeting with doctors today. The prognosis so far is that Sabina will not make a significant recovery because of the slow progress since injury.

This is of course what has been weighing on Shelly's heart. I admit that not seeing Sabina do much more than what I saw the last time distresses me. She is storming more but less intensely. She had some bad storms in the last few days that left her a bit more regressed. One comment that struck the doctor, was that I suggested much of the storming may be due to opiate withdrawal. This makes some sense given the increase after the increase in opiod doses. This somewhat jibes with Mayer's offhand comment last week that we need to lift the drugs to quit schlagging her.

I am going out for a second opinion to see where we stand, but am not hopeful at present. I am trying to find some strains of hope wherever I can. I am combing research programs wherever they are to find something--anything--to bring hope. All ideas of treatments that offer hope for storming are welcome.

My prayers are for Sabina's complete recovery, which would be a miracle. Minor miracles to see Sabina respond would be wonderful. I pray for renewed hope for Sabina. I pray for Shelly and her finding hope.

Morning, June 12

(e-mail from B. Parady)

Not a good morning. She was storming as I came in with no one in attendance. All they gave her was Tylenol. Sabina looked miserable, and makes my heart ache. I will be talking with the doctors about storming this morning and see where we take all this.

My prayer for guidance and love in this most miserable of times. My prayer for a miracle to raise Sabina from the misery that is upon her.

Poem from Italy

Hey everyone!

Just another testament to the impact she's had on our lives: people are praying and thinking of her throughout the entire world. Here is a poem from her friend in Italy, Sylvain E.

------

Quando una dolce pensiero avvolge il mio cuore,
Quando il sole risplende nel cielo,
Quando nella notte milioni di stelle si stringono attorno a me,
Il mio pensiero é per te....

------

If anyone knows Italian, I'd love to have it translated!!!

Monday, June 11, 2007

Excerpts from Letters

(from a letter by Sabina dated July 8, 2004)

I missed your call yesterday because I worked at Joyce's from 11 am - 7 pm and then went to dinner at Lisa's place. The informal Bible study / dinner she hosts is called "Community Group." We had some really good conversations last night. There's usually about 10 of us there (maybe 11 if you start coming =) no pressure...).

Last night we talked about how some of us feel like there are no modern-day miracles and it is often hard to see God in our daily lives. In Biblical times people rose from the dead, the blind saw, etc. Then I brought up that today we spend so much time being busy and multitasking that it's easy to miss the miracles.

To me, just waking up in the morning is amazing sometimes. How God has helped you is amazing. How God helped me through high school. And the list goes on.

How great is it that something as big and powerful as God works on such a small level as me and you. I mean, there are billions of people out there.

(from a letter by Sabina dated July 10, 2004)

I think I've told you this before, but I feel so lucky. Maybe I just appreciate things more than other people. Maybe I'm easily satisfied. I really don't know. But whether the future is better or worse, I will always love life.

Maybe it's the "artist" in me, seeing life as a lump of clay. With God's help, I can mold it to great things. Sometimes the sculptures fall apart, but there is always that potential to recreate. I guess my metaphor is pretty trite, but I leave the beautiful writing for you to do =).

Afternoon, June 11 (Part Two)

(e-mail from B. Parady)

Things are going downhill and little is being done. Shelly has communicated her wishes to the doctors and Sabina will soon be gone.

I am trying to contact the doctors to find out what is going on.

Afternoon, June 11

(e-mail from Cat)

Sabina isn't doing so well today. They had tried to decrease her meds to see if they could figure out the special mixture in order to keep her from storming, but they weren't able to. She has been storming all day through her full strength meds. Her temperature hit 106 and her heart rate hit 200. Currently, she has a temp of 105 with a heart rate of 120-130.

Sunday, June 10, 2007

Evening, June 10

(e-mail from B. Parady)

Not a good day today. They are on a program of not intervening directly to her storms and letting them run a bit, trying to cut her from the heavy narcotics. They are trying to find out how little to give her.

Sabina had a storm this morning at 7 and continued pretty much all day with diminution later in the day. She reached 102+ and dropped back to 99+ with the high rate still in evidence and the high BP. She is being fed Jevity 2 at a reasonable rate so nutrition is steady.

Shelly's sister leaves tomorrow, and Kathy Akel arrives tomorrow evening representing a changing of the guard. Kathy stays until I arrive next Sunday.

My prayers for Sabina's recovery and comfort and the wisdom of the doctors in bringing her to health.

Saturday, June 9, 2007

Evening, June 9

(e-mail from B. Parady)

A mixed picture today. Sabina has no fever today and may even be a bit below normal. She vomited twice, 7am and 7pm. They are trying to get her a protein supplement and start her feeding again. She has diarrhea and is weak, which is why she is still on the respirator.

I will be in New York starting next weekend Sunday and will leave on Sunday following.

My prayers for a miracle in getting Sabina back to health, and to start her rehabilitation. My prayers for Shelly in staying strong through all this.

Friday, June 8, 2007

Evening, June 8 (100th Post)

(e-mail from B. Parady)

An excellent day. No fever. No storms. No vomiting. Attentive. Taking in Jevity 2.0 at 20-30 ml/hr.

My prayers for continuing to see Sabina progress.

Morning, June 8

(e-mail from B. Parady)

Things have taken a turn for the better. Sabina has gone 24 hours without a significant storm. They are now working on taking one med away at a time to find out what the magic combination is.

As for her feeding, there was some minor spitting up, so they cut her back to 25ml/hr on Jevity 1.5, but they are considering taking her up to 2 to get her more calories.

So, Shelly is a lot happier seeing her daughter have a good day.

My prayers continue for her doctors to find the wisdom to give Sabina health and conscious state that works for her. My prayers for her continued improvement in health. My prayers for Shelly's strength.

Evening, June 7

(e-mail from B. Parady)

No report tonight.

My prayers for a miracle to bring health to Sabina. My prayers for comfort for her mother.

Thursday, June 7, 2007

Prayer from California

(e-mail from Sister Jeri, Valley Lighthouse Church)

We agree for God's complete perfect will for our precious friend Sabina, we stand in the gap on her behalf. As warriors we stand together and hold her and her entire family in prayer.

Jesus is the answer, He alone can bring peace and tranquility in the middle of the worst storm at our darkest hour. He tells us, "Be not afraid for I am with you." Even the seas obey His voice, the trees bend in the wind and bow to worship Him in spite of the storms. We must trust and exalt Him, for He is God.

"Father we trust you and you alone, we know you are with Sabina right now in her hospital room. You promise never to leave us or forsake us. You already know of this great need. We bow in humility before you and trust for your perfect will. You are holy and your holy spirit is an ointment that heals and brings deliverance. You are the answer when there are no more answers, you are the door where there is no door, you are the rivers in the desert. You are our only Hope and we stand on your word and your promises. We pray for your loving grace and mercy that endures forever, in the mighty name of our savior Jesus, we wait on you." Amen.

Morning, June 7

(e-mail from B. Parady)

No change in Sabina's condition.

The only news is that Shelly came back from Northeastern, a nursing facility in Lake Katrin, NY, and wants to pull life support from Sabina and basically wants her to die. She cannot stand a less than perfect life or life in a nursing home for Sabina. She is going to have a meeting with the doctors at 2 pm.

I am sure that some would like to harvest Sabina's organs, some will offer support, and some will offer advice to continue. The stress is uinimaginable on Shelly.

My prayer is for Shelly's strength to see that Sabina's life is not in vain, and that life is not less than perfection.

Wednesday, June 6, 2007

Evening, June 6

(e-mail from B. Parady)

A feverish day. Sabina's white blood cell count was up and she has a fever of 101+. She had storms, and has another infection of unknown site. She is being given Tylenol for the fever and antibiotics for the infection.

My prayer is for Sabina to recover from her infections and to begin her rehabilitation.

Tuesday, June 5, 2007

Evening, June 5

(e-mail from B. Parady)

Today was a quiet day. Sabina was exhausted by the storming over the last few days and had a quiet, sleepy day today with little or no storming.

At present she is getting Jevity 1.5 instead of 2.0 at 45ml/hour. The notion is to get her more protein. The doctors anticipate getting consultation from the storm expert at Mt Sinai by tomorrow.

As for Shelly, getting her sister there has been good, and they were able to get out to eat.

My prayers are for Sabina and her steady restoration and recovery, and the skill of her doctors applied to bring her healing.

Monday, June 4, 2007

Evening, June 4

(e-mail from B. Parady)

A really good day for a change. Sabina was quite alert through the day. Her storms have been less frequent, less intense, and and shorter overall. Today was largely uneventful.

They sat Sabina upright and rigged the bed to put her feet down. The bandage was removed that collected fluids. She is showing her hair growth after the operation. The doctors are planning to call the storming expert at Mt Sinai for advice on tweaking the meds. They have increased the gabapentin, used to control storming.

Shelly even went out for dinner tonight with her sister. I will be back on a week from Friday on the 15th.

For this evening, the prayers are for Sabina's recovery and restoration to continue, and for the expert care of her doctors and nurses.

Sunday, June 3, 2007

Written Late One Evening

Miracles

they are not pillars of fire by night
nor clouds by day

but rather, the fact that you are still here

and the memories that are summoned
when looking into your eyes now,

like seeing us share a cup of coffee
early some long-past morning.

~ 6/3/07

Evening, June 2

(e-mail from B. Parady)

It was a rough night, and they sedated Sabina with propofol to limit the storming. During the day, Dr Mayer took over Sabina's case from Neurosurgery, taking it back to neurology. They are now titrating Sabina's drugs to limit the storming and give her as much functioning as possible.

Sabina had the start of a storm late in the day and the nurse hit a dispense button on some new drug, and the storm went away.

Sabina is on a full feeding and doing well at this point. They are keeping her on a respirator to minimize the stresses on her until they can manage the storms.

Originally I was planning on flying back to see Sabina today and be with Shelly, but am delaying since Shelly's sister will be at her side starting tomorrow night. I will return to New York until after her sister's visit.

My prayers are for Sabina's continued good care, and for Sabina's improving health and strength.

Evening, June 1

(e-mail from B. Parady)

Sabina had an uneventful day today. Slight fever, no storms. The consultant on storming at Columbia/Pres adjusted Sabina's medications.

She held her eyes open most of the day, but Shelly thinks that Sabina will be exhausted and tired for a long time because of the past days. Sabina looked at the TV but it is not clear that she is focusing at present. Sabina is still on the respirator.

Kenny came by and gave Shelly some respite.

My prayers are for Sabina's recovery and rehabilitation.

Thursday, May 31, 2007

Evening, May 31

(e-mail from B. Parady)

Just when one thinks that nothing good will ever happen, things turn.

Today was a good day. It started out rough with low grade fever and a storm during the mid-day. Then they took Sabina to CAT scan, determined that the shunt needed adjustment, and then adjusted the shunt. Right then, things turned and Sabina's heart rate, blood pressure and everything else stabilized, and then she achieved some comfort and became attentive again.

All in all a nice finish to the day. Sabina is still on Jevity 2, and running at the max rate of 40 ml/hr, enough to gain her weight with this denser formula. Another day on this and they may run her to Jevity 1.5. The pneumonia seems to be lifting with Sabina's temp at 99.

Shelly is much brighter and much relieved. Kenny's visit gave Shelly a much needed lift. There is a new picture of Sabina on the window of Sabina's room.

My prayer is for thanks to the physicians who relieved Sabina's distress. Prayer is offered to Sabina's continued strengthening and recovery.

Evening, May 30

(e-mail from B. Parady)

Another rough day. Don't know how to express Shelly's feelings. The pneumonia and the fever and coincident fevers are causing Shelly to doubt whether care will be effective.

Today Sabina had a fever that went up to 102 and is now stable at 99. She stormed with high heart rate and high BP. She is on three antibiotics for pneumonia.

My prayer is for Sabina to recover from the pneumonia and to end her storming.

I pray for Shelly's restoration and strength through this most difficult period. I pray for God's love to heal Sabina.

Wednesday, May 30, 2007

Evening, May 29

(e-mail from B. Parady)

Another very rough day.

Sabina had a fever all day, partly due to the pneumonia and partly due to the fact that she has to take an antibiotic that she is allergic to. She is running a fever of 102.7 at present and they are contemplating a cooling blanket. They fear that the blanket may bring on a storm so are laying back.

My prayers are for Sabina to get through this latest crisis with the pneumonia, and for her strength to be restored. My prayers to Shelly for staying by Sabina through all of this.

Monday, May 28, 2007

Evening, May 28

(e-mail from B. Parady)

Rough day.

A storm this afternoon. Trying to control heart rate and BP and keep stimuli down. Cooling blanket removed. Fever over 101, now down to 100+, HR 170, BP 180/95. At least she is being fed although a bit light at 15 Jevity2 /hr. Fairly stable tonight. CAT scan tomorrow. Will adjust the shunt also.

The only positive for the day was that Susan stopped by to lend a hand.

My prayers for Sabina's recovery and restoration of strength. My blessings to Shelly who stays with Sabina through all of this.

Sunday, May 27, 2007

Evening, May 27

(e-mail from B. Parady)

Not a good day. Sabina had several storms or fever spikes during the day going to 101 at times. She is in pain grinding her teeth. They had to put a tongue depresser between her teeth.

They talked Friday about cutting her pain killers and this may be the effect of that maneuver,
fearing that the pain killers are causing nausea. She had to go off feed today because of vomiting, and went back on this evening as was on Jevity 2 upped to 10/hour as Shelly left at 9.

My prayer is for Sabina to stabilize and begin feeding and adjusting to the pain killers. My prayers for her doctors and nurses to see through this for Sabina. My prayers for Shelly to give her strength.

Evening, May 26

(e-mail from B. Parady)

A pretty good day in sum. Sabina watched TV for a fair period. Her fever was in check for most of the day then crept up in the evening over 100. It was quickly knocked down to 99+.

In all a fairly comfortable day except for the fever phase. The pneumonia is still on with 3 antibiotics going. I suspect that they will cut back to one when they get a culture back.

Oh yes, she did move her toes. Something not seen in a very long time.

My prayers are offered for her continued good care and recovery.

Saturday, May 26, 2007

Evening, May 25

(e-mail from B. Parady)

Still working through the pneumonia. Sabina is on 3 antibiotics at this time to deal with it and has slight fever because of it.

They are adjusting her shunt because of swelling at the operation site.

They are upping her nutrition to a denser material and giving her Reglan or something like that to enhance absorption.

Most of the day she was drowsy.

My prayers are offered for her continued recovery from pneumonia and loss of nutrition and for her recuperation.

Evening, May 24

(e-mail from B. Parady)

Sabina's spirits have been good all day. The problems are elsewhere. She vomited up all her food and to compensate, they are giving her 2 units of blood. After being put on the respirator for the operation, she now has pneumonia again.

I offer my prayer for Sabina's recovery from pneumonia and being able to digest again. May her recovery continue.

Morning, May 24

(e-mail from B. Parady)

Shelly was really excited this morning. The physical therapist had Sabina move her leg on command. Moving on command is often regarded as the difference between coma and consciousness.

Nothing else to report at this time. Having Susan there last night really saved the day for Shelly.

Prayers for Sabina's love, hope and recovery.

Evening, May 23

(e-mail from B. Parady)

Another rough day, though Sabina has been alert through the day. Sabina has not been fed for a while because of the vomiting. They are working to some sort of resolution on this.

They had to Xray her arm to install a PIC because her veins were collapsed. She has a minor fever at this point and they are working to deal with it using painkillers.

Not an easy time for Shelly nor Sabina. Susan is there reading to Sabina which is much appreciated.

My prayer is for Sabina to begin being fed comfortably and for her to resume her recovery. I pray for comfort for Shelly.

Evening, May 22

(e-mail from B. Parady)

Rough day. Sabina had a fever that was determined to be a central fever through most of the day. She has a fever of 101. Her arms are swollen, possibly due to a clot.

The shunt went in successfully late in the day.

Shelly is with Sabina, and staying till at least 11:30.

My prayers for Sabina's recovery from surgery and fevers. I pray for Shelly and her comfort.

Evening, May 21

(e-mail from B. Parady)

Busy day today. Some storming last night. The day had her under sedation to reduce storming to get her to surgery tomorrow. The neurologicals seem to be improving with Parra stating that she is showing semi-deliberate responses. Because of that they have wired her head again. Shelly is on cloud nine. The roller coaster continues.

We may have surgery tomorrow, the picture is murky at the moment. She is on a reduced feeding at 30/hour, they are reluctant to move her up faster.

Dre has provided a fabulous picture collection for Sabina's rehab to help rehash her last few years.

My prayers are for Sabina's healing to come from the highest with all the love of the Lord.

Evening, May 20

(e-mail from B. Parady)

The day started with Sabina being active. Shelater had a storm with fever. This brings her procedure tomorrow for a shunt in question, and will likely be delayed until Tuesday or later depending on the course of the storm. Currently they are planning on surgery tomorrow, but that could change.

Sabina did watch a fair amount of TV and stayed attentive.

My prayers are for her steady recovery from thes torm and for comfort for Shelly.

Evening, May 19

(e-mail from B. Parady)

A day of heavy sedation. She was groggy with a low (45) heart rate early in the day, and now the heart rate is just below 60. She smiled at Shelly a couple of times. They drained her spinal fluid to reduce swelling. They will likely let the swelling increase tomorrow night to give the surgeon a better target when the shunt is installed on Monday. Today it looks certain for the shunt.

On the feeding side, Sabina is up to 25/hour and they are increasing it slowly because of the vomiting that took place before.

My prayers go out to Sabina for her steady recovery, and to Shelly who is bearing the load of being with Sabina.

Evening, May 18

(e-mail from B. Parady)

Found out more about the asymmetry in Sabina's bone flap. It turns out the bone flap is symmetric. The reason that her head appears asymmetric is that there is a loss of muscle. With hair and possible future plastic surgery like collagen injections, there exists the possibility for some rebuilding.

So what will happen is that the pressure in Sabina's skull will be monitored via CAT scan over the next couple of days and if there is progress (not sure what they are looking for) steadily till Monday, they will cancel the proposed shunt on Monday, and wait a couple more days. If progress continues, the shunt will be cancelled altogether.

Sabina looks a lot better after Dr Connolly adjusted things a bit after removing the drainage tube. Shelly feels a lot better at this point. Sabina was opening her eyes again as we talked.

My prayers are for my sweet daughter's continued recovery.

Morning, May 18

(e-mail from B. Parady)

The bone flap is the wrong shape for Sabina's head. Sabina will in alllikelihood require installation of a shunt.

My prayer is that Sabina will come through all of this and that her doctors will ensure her health. I pray for Shelly's comfort.

Evening, May 17

(e-mail from B. Parady)

The day has been steady and uneventful. Sabina has been very steady with long periods of eye opening and wakefulness. She smiles in reaction to various things and seems to sense that there is something different, and it is better.

Both Shelly and Dr Gordon feel that things are much better neurologically. Sabina has a long way to go in that she exhibits no level of control over her limbs yet. That will take time.

Some folks have asked about the shunt and what is it if Sabina has one installed. It is technically called a ventricular shunt. More information is here:

http://health.enotes.com/neurological-disorders-encyclopedia/ventricular-shunt

Shelly is continuing her routine of physical therapy, moving Sabina's limbs. Visitors are now welcome of course.

Our prayers continue for Sabina's recovery.

Morning, May 17


















(e-mail from B. Parady)

First morning after surgery.

The report from Shelly is wonderful. Sabina is as alert as she has ever been. She is "very very alert." She seems to be watching the television and paying attention.

She is still sedated from the surgery, and is still on the respirator for post-surgical recovery.

They have her scheduled for a shunt on Monday. They plan to watch her during the next 3 days and decide whether to implant the shunt. If not, they will simply cancel the Monday surgery. Expect her then to take a quick trip to Helen Hayes.

So given the news, I decided to include a photo of the bridge over the Hospital from Joon for your enjoyment, in spite of the fact that it will clog your email.

My thanks are offered in prayer to the staff of Columbia Presbyterian.

Evening, May 16

(e-mail from B. Parady)

As you know Sabina came out of surgery in fine shape. All that I have to report is that her CAT scan looks great and the brain is adjusting to its new box. Dr Connolly told us both that she may need a shunt, and that if it were to be done it would be done on this visit to Columbia, rather than having her come back again. Sabina was opening her eyes slightly in spite of the heavy sedatives.

So, my expectation is still for Sabina to be at Columbia until Monday or Tuesday.

Our prayers for a continued recoveryand restoration through the night and tomorrow.

Surgery Update, May 16

(e-mail from B. Parady)

Surgery is complete. It took 4 hours under sedation. Sabina was terrified going in, and is now resting peacefully. She is so heavily sedated that they have put her on the respirator in case she forgets to breathe. They expect to remove it when sedation is lifted.

Sabina now has a tight head bandage which will be on for 2 days. There are drainage tubes and lots of scary-looking tubes coming out. They will make a call on whether to install a shunt in 2 days. Right now it looks like transport to Helen Hayes no earlier than Monday.

Sabina has already had visitors from the dietetics compatriots.

Currently in New York there appear to be tornado warnings with very high winds and black skies at the hospital. The kind of day where no one bothers with an umbrella unless they want it destroyed. So no storms for Sabina, the weather is taking that role.

Our prayers now for her comfortable, and complete surgical recovery.

Evening, May 15

(e-mail from B. Parady)

A good steady, pleasant day. Shelly learned a few new tricks from the physical therapist. The plan is still for Thursday surgery, though they brought up the possibility of having Wednesday surgery.

OK, I really don't know when Sabina will have her surgery. Infectious disease gave her a clean bill. The docs had a lot of emergency today, which reduces the likelihood of anything tomorrow.

What this means is if they do not do her tomorrow, Sabina would likely go to Helen Hayes on Monday. But then again who knows?

So, our prayers go to getting just another good day awaiting what tomorrow brings.

Morning, May 15

(e-mail from B. Parady)

Sorry for being a bit late, but Sabina's surgery was canceled today due to an emergency surgery preemption.

Wednesday is completely booked, so Sabina's surgery will go on as scheduled on Thursday.

Grammar Clarification

(e-mail from B. Parady)

Just to be absolutely clear and to avoid any misconceptions, I am not in New York and when I mentioned that "Sabina talked to me briefly", that is before her accident. The context should have made that clear, but some folks may not know that she is still semi-conscious and unable to speak. The trach makes it impossible for her to speak even if she wanted to.

When she does speak again, it will be a red letter day.

Evening, May 14

(e-mail from B. Parady)

As you know, the surgery was canceled forMonday, and is now on for Tuesday. Dr Mayer thinks no shunt is needed. He thinks that Sabina will be at Helen Hayes by the weekend. Shelly wants her at Columbia till Monday when the staffing is better atHayes.

Sabina is having poor absorption of her Jevity, so they dropped it back to 10, and will cut her to zero as surgery approaches on Tuesday. They may get her back upto 20 till midnight.

Sabina is considerably less groggy than yesterday indicating that they may be dropping the sedation. She smiled for Shelly.

I have great aspirations for Sabina. As you know she was really getting into pediatrics at Morgan-Stanley Hospital. When she gets to recovery, let's see if we can get her back there. She did talk to me briefly that she once considered becoming a pediatrician. Let's be hopeful that she will become an inspiration at whatever level she attains.

Our prayers continue for Sabina's continued restoration and recovery by whatever means is in the hands of her physicians and what God has given Sabina.

Evening, May 13

(e-mail from B. Parady)

Pretty stable day today. Apparently all too stable given the orders on her chart to move her to step-down. Step-down is the term for a regular hospital room. Funny how the world changes. At any rate, the word around here is that step-down is lousy, with patients sleeping in soiled bed linens. Shelly is fighting this.

So for surgery on Monday, well maybe not. Officially she is scheduled for Thursday, but Sabina is essentially on standby with them cutting her feeding at midnight, and then if there is no surgery restarting it. Best guess right now is noonish on Monday, if there is a gap in surgery load. Otherwise, Tuesday or Wednesday, or lo and behold Thursday. Welcome to Sabina and Shelly's roller coaster.

Currently they are keeping Sabina on a drug cocktail tuned to keep her storms away until surgery. The doctors at Columbia are good, very good.

I am starting to get the pictures that Helen Hayes requested for Sabina's rehab. Many thanks to all of you working your pictures. They can be simply of yourself with your name on the back or with Sabina, but be sure to make the faces large and easy to see.

Erin and I headed back today. Shelly is now back on the east side for her stay. We really missed the McKeen, even for this afternoon. Shelly was ready to go up to our room and kick off her shoes. Having that facility was great.

Our prayers for the new day and whatever it will bring for Sabina, whether another day of waiting or completion of her surgery.

Evening, May 12

(e-mail from B. Parady)

A good day of rest and some activity. After the storms and difficulty of the last two nights, welcome. We had a minor scare late this evening as she had a bit of respiratory distress and opened her eyes wide, the precursor to storms the last few nights. The nurse, one of Shelly's favorites, Yim, managed to suction Sabina out quickly and Sabina went back to resting.

Joon headed back early this morning,and Erin stayed through the day. Nice to have them both here. Both Shelly andI have really enjoyed staying at the McKeen, the in-house hotel-like facility at the hospital. It allowed both of us easy access, staying late if needed, and a comfortable refuge in the middle of the day. Shelly heads backto the upper east side tomorrow night, and I headback to Danville late in the afternoon.

We are praying for a pleasant and steady night for Sabina.

Morning, May 12

(e-mail from B. Parady)

Morning update. The storm last night was easily brought under control.

In the morning we saw increased swelling on her head, and were concerned. Dr Temes, the neurosurgeon, came by and gave some details. He was not concerned about the level of swelling. He does not think that a shunt is indicated since the fluid appears stable. There is no relationship between storms and fluid. He said that overall the storms will decrease over time. Certainly a relief to us. Getting the flap in will not relieve the storms, but will not aggravate them either. They plan tocontinue her drug cocktail at Helen Hayes or wherever she rehabs, and decrease the medication over time. The cocktail is to moderate the storms. Dr Temes said that he was the one responsible for bringing her here.

So all in all, things move along, slowly. Our prayers of thanks for Dr Temes, and the fine ysicians and nursing staff here.

Evening, May 11

(e-mail from B. Parady)

Things went from great to terrible last night. We had a storm as I was in her room after 10pm. Hard to watch as she writhed. They got her back to normal in a short period of time, within 2 hours.

What the storm did was call into question her infectious state, and because of that she lost her place in line at 7am. So no surgery today. It has been rescheduled for Monday.

Most of the day was quite calm today with a fair amount of eye activity. Some vomiting indicating some digestive distress, perhaps impaction. They were about to relieve it this evening and she had another storm at a little after 9. I am now waiting it out.

So my prayers for Sabina to get over this storm in safety.

Evening, May 10

(e-mail from B. Parady)

A very nice day today. An hour or so of open eyes at midday, then a lot of rest. She seemed genuinely tired. During her wakefulness she was expressive and seemed to be tracking. Vitals were very stable and good. They bumped up her Jevity to 60/hour.

This evening we got the news of her scheduled surgery on Friday: 7am. So we are tense with anticipation. Shelly will be up early in the morning and I will be staying late with her this evening.

So our prayers for Sabina in the night, and for her surgical team tomorrow.

Evening, May 9

(e-mail from B. Parady)

Today we got the decision on the surgery: Friday. The docs wanted everything in the area of infection to be clear before embarking. So we are heading toward a Friday operation.

In Sabina's case, her head swelled a bit more and her surgeon, Sander Connell called for fluid to be drained from the spine to reduce the swelling volume. This seemed to help her a bit and she came around to see us, express herself. Nice evening.

Most of the day her vitals were right on, no fevers, just sleepy and tired. On the people side, a lot of visitors today, from the Nutrition/Dietition corps, Ron, Matt, and Erin who arrived for a stay until Sunday.

Shelly and I are now ensconced in the McKeen facility on the 9th floor of Milstein. Pleasant, and more than convenient. I leave on Sunday and Shelly returns to the more spartan facilities then.

Her nursing care is just on top of things. Shelly is playing physical therapist.

All is well and we pray for thanks, and her good care going into Friday.

Evening, May 8

(e-mail from B. Parady)

A quiet day today. She slept with very normal and steady vitals today, no storms, no fevers and all is well. There was no surgery because of an infection. The white count went to normal today and the urinary tract infection seemed to be clearing. Her yeast infection was also cleared.

Infectious disease came by and basically cleared her for surgery tomorrow. We met the surgeon earlier, and he seemed to be taking a conservative path, ready to go forward. He will be cutting all her hair unlike St Vincents which let it clump.

He was not concerned about her swelling and felt that putting the prosthetic flap would take care of the swelling. He indicated that there was little likelihood of Sabina needing a shunt with the new flap perhaps clearing things up.

So little activity today, a resting day, and we face tomorrow with the likelihood of surgery.

Our prayers are for Sabina's continued strengthening and the surgeon having an easy time getting everything just right whenever it happens.

Evening, May 7

(e-mail from B. Parady)

Wild and woolly day. Shelly and I visited Sabina this morning at Helen Hayes not knowing what the day brings. We needed to take care of some affairs in the city and when we returned as we were eating we got the call that the ambulance was on its way to take Sabina back to Columbia.

It turns out Sabina had a spike fever this morning and the swelling over her craniectomy. The concerns raised were whether to install a shunt and whether she had an infection.

She is now in room 8-354, next door to her old room. Tomorrow morning we need to be in at 9 am to approve of whatever procedure needs to be done tomorrow. The go-no-go is in the hands of the infectious disease team.

So for now, we are both praying for her restoration and good care at Columbia and return to Helen Hayes.

Evening, May 6

(e-mail from B. Parady)

Spent the whole day with Sabina today.

She does have swelling on the side of herhead which seemed better than yesterday.

She seemed to track with eyes and was emotionally responsive. Got a lot face time with her. Really enjoyed the time. We like the Helen Hayes staff and patient visitors. One of the other visitors came by to introduce her son who was hit by a drunk driver in Mexico at 80 mph. He is now walking around.

We spent the day moving her limbs. We enjoyed being with her.

I guess we feel somewhat optimistic about her and getting to recovery.

At present we have no clue as to what will happen tomorrow. The goal of the Columbia docs is to do surgery for the skull prosthesis, and perhaps do a shunt, to be determined.

All of this depends on availability of a bed which may or may not happen. We are prepared to stay at the Crowne Plaza at Ft Lee if need be, or we return.

So our prayers continue for her restoration on the skull, her rehabilitation, and good spirits and strength.

Evening, May 5

(e-mail from B. Parady)

Just arrived from California and went up to her room at Helen Hayes.

Shelly has been by her side. They have an attendant in her room at all times which in many ways is better than a regular hospital room.

Sabina does have swelling in the spot where her skull flap is and will need to get that treated. Monday she is scheduled to return to Columbia probably for a shunt and maybe to have her prosthes is installed. She didnot appear feverish so all may be happening this week.

It was mostly a quiet day for her today but she is not in distress, she seems to need the recovery.

We will need to return to NYC at least during my stay and I will be looking for a room for us during that time. I will like take in the Crowne Plaza across the GW.

Our prayers for Sabina and her continued treatment and recovery. The struggle is a difficult one.

Evening, May 4

(e-mail from B. Parady)

Sabina had a fever in the morning, which wasrelieved mid day. She is on antibiotics. Sheis having some hydrocephalus, or swellingof the brain, and various measures arecontemplated. She has some sort of minorinfection, perhaps bladder.

She tends to get tired very easily after allthe rehab and so sleeps deeply to compensate.Her wakeful periods seem short.

Shelly really likes the optimistic environment andmood exuded at Helen Hayes, and really enjoys it.

They are planning on doing the skull prosthesisthis Tuesday and shipping her back to Columbia on Monday. Right now given the state of her infections, I would call this iffy at best. My guess is that they will call it off,but then again, I do seem to be wrong thesesorts of things.

I am still planning on going back to the uppereast side on Sunday to pick up anyone whowants to spend the afternoon.

At this time, prayer is for her hydrocephalus andthat it may be relieved, and for her infectionsthat they may be removed, and for her continued strength through what will bea difficult time in the next few weeks.

Thursday, May 3, 2007

Evening, May 2

(e-mail from B. Parady)

This was the first full day at Helen Hayes for both Sabina and Shelly.

The first thing that Shelly said was that Sabina smiled today. The staff had her sitting in bed today. They had physical therapy, voice lessons. She was not afraid and seemed to be glad to be up doing things. She had a period of rapid heartbeat, but it was quelled quickly. There was a bit of a fever and they are bringing back the antibiotics again.

Currently she is not sharing a room with anyone although there are 4 beds in her room. It overlooks the Hudson Valley in a great view. They plan to give her a bath tomorrow which apparently all the patients seem to love. By the end of the week they plan to have Sabina in a wheelchair and have her going on the grounds. Tomorrow she will start to wear regular clothes in the hospital, not hospital garments.

So lots of change. Sabina seems to welcome it and so does Shelly.

All our prayers for Sabina's continued hard work for her rehabilitation.

Wednesday, May 2, 2007

Evening, May 1

(e-mail from B. Parady)

A new month, a new hospital for Sabina. As noted, she has been transferred up to Helen Hayes Hospital.

Sabina got up here at 7:30 all in good shape. She is resting at the moment. There are lots of young people up here. They have a full time attendant in her room at the moment at least for one night. They plan to be very aggressive with Sabina's rehab. The word is that recovery is slow here, like watching grass grow.

Shelly's room is free for the asking and she is comfortable. Sabina's surgery will happen at Columbia in a week or two. They are two days away from finishing her skull flap replacement. The surgery is not regarded as a big deal. Likely she will return to a regular room at Columbia and not NICU and be there only one night or two before returning to HHH. Shelly plans to stay with Sabina at HHH until July to get a full course of rehab there and to have the support of the Columbia staff as needed.

That is all for today. I plan to be back in NYC on Sunday and will trek up to HHH. I am planning to take a car.

My prayers for Sabina's steady rehabilitation and Shelly's strong support. People do get very depressed facing a very slow road to rebuilding their lives and need a lot of support.

Tuesday, May 1, 2007

Schedule of Move to Helen Hayes

(e-mail from B. Parady)

Sabina will likely be moved to Helen Hayes today. Paperwork is the only remaining obstacle.

Shelly will be staying in the family facility at Helen Hayes Hospital.

Evening, April 30

(e-mail from B. Paradi)

Given the machinations of insurance and the interchange with St Vincents it appears that Sabina will not be moving until Wednesday to Helen Hayes. The floor seems relatively empty at this point so the pressure to move her is not intense.

Sabina's eyes were open for long periods of time. Later she went into a deep sleep, a restful sleep that she seems to need. By and large a good day for her. A slight fever, that later dropped back to near normal. Vital signs are stable.

One thing friends are doing is creating cassette tapes or CDs of their voice reading or saying things for Sabina to hear. This seems to be something that we can take with us to Helen Hayes and offer some comfort.

Our prayers are for Sabina and her well being and comfort and healing.

Evening, April 29

(e-mail from B. Parady)

Not a bad day. Mostly sleepy since Sabina was active last night. She had a little bit of high heart rate for which the nurse administered some fluids and it went away. There is a mild fever which is not much of a concern of staff a this point. Any storming last night was mild.

They consider Sabina stable enough to be sent to Helen Hayes. It would appear that she will be there from 2 to 4 weeks awaiting skull flap prosthesis.

So, lots of friends today, especially since Sabina will be going into the hinterlands for a while. Shelly really welcomes the support and it means a lot. The new man on NICU is Neeraj Badjatia for the week.

Well, time for some more prayer of Sabina's rehab and reconditioning. My thanks for the work of the staff of Columbia to stabilize her.

Evening, April 28

(e-mail from B. Parady)

The first half of the day went well, but then Sabina had another neurological storm. The typical storm as you know has been a spike in fever and rapid heart rate. We thought that after not having any storms for almost a week that they had passed.

Not sure that Sabina will be leaving to Helen Hayes early next week if they don't get a handle on the storms.

The staff treated the storm quickly and the demerol made her sleepy for the rest of the day.
So the optimism of the week faded a bit today, but we all know that there are ups and downs in recovery.

I will offer a prayer for Sabina's continued good care and a management of her storms.

Evening, April 27

(e-mail from B. Parady)

Busy day for Sabina. The therapists sat her up today. Did not bother Sabina that much, but Shelly almost had a heart attack. Apparently they are very aggressive about getting folks up and about, and Sabina is no exception. When she sat up her eyes opened wide in excitement.

They worked on her neck muscles and the like to get her tone back up. A new helmet was brought in from the brace department, and it is a much better fit. Sabina seems to have stopped her diarrhea and had a bit of a fever which was moderated with a cooling blanket. It went down to the 99+ range.

All in all she had a good day. She was sleeping as Shelly called in. Things are going to get much more active for as they move forward. Dr Mayer left Dr Parra in charge for the weekend. Next week a new doctor takes a turn. Dr Mayer is taking the the week off from his normal rotation, and Dr Mayer makes the schedule.

Kendra came by, totally jet lagged, and shocked when she saw Sabina.

Mostly what I like is Sabina's care, and that Shelly is comfortable going home and sleeping at night. We have a lot to be thankful for.

So let's give Sabina a cheer for being sat up. Little things every day.

Our prayers for Sabina continue, as she is given rehab.

Evening, April 26

(e-mail from B. Parady)

She had somewhat active day today with physical therapy and Botox injections. In the evening she was tired with diarrhea slowing her down a bit. They are giving her potassium to compensate.

Basically she is physically stable at this point and able to be transferred to Helen Hayes Hospital in West Haverford, NY. We anticipate that around Monday next week Sabina will be transported up there for about 3-4 weeks awaiting her skull flap repair, and then be transported back to Columbia at that time.

http://www.helenhayeshospital.org/ http://www.helenhayeshospital.org/inpatient_rehab/tbi_inpatient.htm

So far there has been no change in Sabina's neurological state, though we remain hopeful.
So here are my prayers to Sabina, for her to return to consciousness, and to be built up through her rehab.

Saturday, April 28, 2007

Evening, April 25

(e-mail from B. Parady)

A quiet day today. Shelly describes it as a restful day, the kind that a baby has after a long hard, time. A tired sleep. Recovery. Not a fitful sleep as she has been experiencing.

Basically she was groggy today. The vitals were good all day. Max fever was 100.4, which is OK. Most of the time the temp was 99. There have been no antibiotics administered, Mayer thinks not needed at this point. Her BP and heart rates were excellent. They took her off the Fentanyl drip and went to a patch only meaning that they have her titrated. They added a muscle relaxant which may have accounted for her lack of tightness in the arms and eased expression.

Sabina seemed genuinely sleeping, able to bend arms and had no storms that increased HR or temp.

Shelly really appreciated the visitors as it brightens her day. She is becoming more involved with the other patient families in the unit offering them comfort. Shelly really appreciates Dr Mayer's optimistic approach.

So a prayer of thanks for a good day, and a prayer for Sabina pushing forward to more activity and strength.

Evening, April 24

(e-mail from B. Parady)

Sabina had a day without fever. They have not administered any antibiotics. She had her eyes open from 11:30 to 5:45 and Shelly spent the day talking upbeat, positive things to her.

Sabina has been off the respirator for 24 hours without complication. They removed the St Vincent's tracheostomy with one that Columbia uses.

Sabina's mood and expression was sad and melancholy, but Shelly was working to disabuse her of any negative notions telling her that it as ok to be sad and tired, but that Sabina was not allowed to give up.

Dr Mayer had the consulting neurologist on her fever storming come and visit Sabina.

All in all, Shelly is thrilled to have Dr Mayer on Sabina's side and looks forward to Sabina's continued progress.

Our prayers continue for Sabina's steady climb.

Evening, April 23 (Extra Report)

(e-mail from B. Parady)

We have a lot of good news. To start with Sabina is off the respirator. Amazing. She still breaths through the trach for eases. Second Dr Mayer gives her a 50 percent chance. He says that if Sabina can follow simple commands within one year, she has a chance of recovery. He has seen worse. Her heart is strong and otherwise in good shape.

The doctors are administering a drug cocktail to find Sabina's best place to operate. As soon as medicaid gets approved she can go to Helen Hayes upriver in New York. Dr Mayer is working out options on when to replace her skull flap.

What Sabina needs now is lots of pleasant stimulation via speech. He says that patients do best when they have something to come back to. So I guess this is my appeal for friends to come and visit and visit often.

Amazing. They are really trying to live up to their sign.

Evening, April 23

(e-mail from B. Parady)

Sabina had a great day. Shelly felt that she had Sabina's attention. There is a low grade fever and they have the cooling blanket on. The stanched her high heart rate episodes with Demerol during the early part of the day. Sabina is headed for a restful evening as things go along. Dr Mayer is bringing in another consulting neurologist to help deal with her fever and heart rate storming. They plan to administer botox to her legs to get them out of their rigidity. That alone will cost $1000s.

Shelly is making friends in the ICU with other patient's families and sharing with them. The mood has shifted 180 degrees since yesterday. A prayer of thanksgiving for the day.

Evening, April 22

(e-mail from B. Parady)

It was an up and down day for Sabina. She had a bit of trouble last night and they had to put a cooling blanket on her. The docs are not so concerned with catching the fever so quickly since it tends to come down fast. They are putting her back on antibiotics, but the infection appears trivial and can be treated with ordinary antibiotics.

During the day she was peaceful and not in pain, and we she did fever a bit later she not go into a pained expression. The opiod sedatives are doing their bit. Mostly it was a good day. The care leaves Shelly quite a bit at ease.

A side note. Even though Sabina's case is very difficult and takes a lot of resources, there is much to be gained by the medical profession in learning from her case. Her care and the results will aid others as they face similar circumstances. In a setting like Columbia, Sabina is giving herself even now.

What made the day for Shelly was that there were a steady stream of visitors including a Danville Girl Scout friend. She is looking forward to meeting Dr Mayer who will be on duty for the next couple of weeks. He seems to be very sharp.

My prayers are for Sabina, and for her doctors and nurses for their care and kindness.

Evening, April 21

(e-mail from B. Parady)

Time for me to reveal what was going through my head, and what lead to the effort to transfer Sabina to Columbia. What happened was that I did enough research on Sabina's fevers and condition to know that the fevers meant a very poor prognosis. Why I focused on Columbia was that there some pharmacological means to deal with these lower brain issues (spiking fevers can originate in the hypothalamus). Columbia has the skills to deal with this.

What I am bringing to you is that Dr Otten sat down with us to go over what is going on and what the treatment plans are. When Sabina exhibited her days of responsiveness, that gave everyone, including the doctors at Columbia some hope. What is happening now is that they are titrating her Fentanyl and Demerol to find a spot in consciousness for her to operate. She needs to be relieved of the horrific pains that she is getting enough to mount nerve action. Further on they there employing bromocriptine to control some of the other aspects of the autonomic nervous systems, among other drugs. They are also giving her insulin to control nerve damage in rehab.

The hope is that in the next week they can bring Sabina to some level of consciousness again. Currently she is exhibiting almost not cortical activity, and only brainstem activity. The eye motions are unguided and the body motions are not coordinated. We are back where she was before she became reactive. The hope is that they can bring her out, the fear is that she will not emerge.

Bottom line, Dr Parra gave us the superficial case. Dr Otten is describing the case of hope, very very thin hope. Literally hope against hope. The hope that I wanted to buy by getting Sabina where she is now.

Today Sabina mostly rested and had uneasy moment. This evening she is at ease, and I cannot tell from Shelly if she is showing some signs of comfort, but she may be. They have a sign over the walkways to Milstein that says amazing things happen here. Well, we hope so, and even if they don't we will continue to hold out hope.

My prayers for Sabina to find her consciousness, for her doctors to mount the good fight, for her nurses to manage her through this, and for Shelly and Sabina's friends to stay with her though this. God bless all of you.

Evening, April 20

(e-mail from B. Parady)

As Shelly pointed out, we discussed Sabina's prognosis with Dr Parra. He is not optimistic, then, we were given no reason to be optimistic. When she came here she was in worse shape than she is now. She was tense, pained, and bad off. They are doing EEGs 24/7 to track her activity. They are taking her off anti-convulsives since she seems stable. They are weaning her off the respirator and she is responding. Dr Parra is applying stimulative drugs to perk her up and get some activity going. Sabina does open her eyes now. Earlier this week she did not. She does not track yet with her eyes. She perhaps responded to my touch by opening her eyes. We shall see if this becomes consistent. Dr Parra has been honest, direct, caring, and professional

Dr Parra is planning to reconstruct her skull and will carry out the process to do that. He will not use the flap at St Vincent's. We are working on transition to another facility, whether SCVMC or Helen Hayes Hospital upriver in New York.

She is in the hands of God. May the Lord protect her and strengthen her.

My Precious Daughter

(e-mail from S. Moore)

Today Dr. Parra told us that Sabina's injuries were very severe and he does not expect her to recover from her current state.

Birthday Morning, April 19

(e-mail from B. Parady)

Now she is 24. She got through the night with one fever spike at 6am and just had one as we came in. She was wide awake when we came in and slightly feverish.

They have her on EEG and looking at how all of these episodes are triggered. This will take more research and science to resolve her condition.

I am thankful to be with her and able to do what I can for her care. My prayers for Sabina on her birthday.

Evening, April 18

(e-mail from B. Parady)

A new time, a new place.

I am stunned at the modernity of Columbia Presbyterian. The neuro ICU ward here is second to none. Sabina has found her home for the next couple of weeks.

It is the little things that matter. First they are all computerized. No one messes with paper. All drugs are accessible, not air tubes from pharmacy. Her room is tidy and has not mold or dust near the patient. The professionalism is at the highest level whether physicians, nurses, or healthcare staff. Her bed shakes to reduce bedsores. They came in an percussed her lungs, something was never seen at SVH. Sounded like a massage at a spa. Should be good to clear the passages and lungs.

Her condition was basically sedated because of all the activity. They are using what I consider to be Sabina's prize sedative, Fentanyl. This was the sedative used when she got to the point of following commands. Clearly she has been in a lot of pain, and the source of it needs attention. I do get the feeling that we are going to get somewhere with her in this setting.

At any rate, my current prayers have been answered, now for new prayers. Time for Sabina to get diagnosis and prognosis, and Godspeed her rehabilitation.