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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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!

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.

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.