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.

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 They applied propofol last evening and Sabina is resting easily after the propofol was withdrawn.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.

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 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.

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.

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 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.

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 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 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.

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 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.

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 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.

Evening, April 17

(e-mail from B. Parady)

A couple days early for Sabina's birthday present. She is on her way to NY Presbyterian, Columbia University. Attending will be Dr Augusto Parra.
Transport ambulance has been arranged.

She had a good stable day. Temps steady.

Prayers have been answered, now we need to pray for the resolution of her spiking fevers, which I hope will be coming soon.