I let my guard down.
As soon as the post went up titled "A Good Week", I should have know that the enemy would attack. And he did.
Molly's hemoglobin dropped to the low 7's yesterday morning. She is passing blood. Not sure why. She was to take two units of blood yesterday; first unit went well but she had a reaction to the second unit and it had to be stopped.
Today she went down to the PT area to be fitted in a new power chair that has been arranged for her (pink of course). During the fitting, she almost passed out and had to be returned to her room. Also during the "fitting", in total innocence, the wheelchair rep was saying things like "in years to come", etc... I think this also led to depression that she was experiencing the rest of the day.
She is currently taking more units of blood. I think the Drs have found the reason for the blood loss, but I'm in the dark at this moment.
Our prayer request is that the reason for bleeding will be stopped and that Molly will regain a positive attitude.
Wednesday, July 29, 2009
Sunday, July 26, 2009
A Good Week
Its been a good week.
Some relatives has come down for a third trip since the accident. They pointed out something to me... every trip she has made there have been dramatic improvements in the movement of Molly's arm and neck. I suppose that we are too close to the situation and cannot see that improvements as a whole are significant!
On Wednesday Molly wanted to show me something. I held her right wrist while she lifted her hand about an inch or so! WOW! This was one of the things we were waiting for. Previously there was only movement in the arm and shoulder. The therapists told Molly that when the wrist and hand got strong enough, the fingers should start moving. Hallelujah!
The hospital team that cares for Molly has decided that they need to keep Molly until August 6th! Hallelujah! We needed the extra days.
And today... today after work I got home and checked my email and found a short one from Molly. When I got to the hospital she told me she was able to craft the email herself! A special device enables Molly to s-l-o-w-l-y type a short message. But this opens up a whole new frontier for Molly and allows her some freedom! It is not easy for her to type out the words. (I had already been looking at voice recognition software for her) She's working hard and will get it done one way or the other!
Julie and I are busy revamping the house. We need widen some doorways, move furniture, and maybe, just maybe put down a wooden floor.
We will be converting the guest bath into a chair friendly area by removing the tub, re-tiling the entire area to make a shower with no floor impediments and rearranging the sink without any underneath interference. We can only accomplish this by removing the door and adjacent wall to the bath. We'll work it out...
We are turning the living room into a bedroom for Molly. She wants us to paint it pink... oh well, OK!
Some men from the church have indicated that they will oversee all this renovation. This, I believe, is the church in action; showing love in pure form.
A Bible Fellowship member has donated a hospital bed to us. We are most thankful. We need to find a hoist/lift for getting her out of bed and into her chair and we need to find a rear car lift to carry her chair while getting her to and from out-patient therapy once we get her home. If we can find a titanium chair at an affordable price then we can wait on the car lift.
Molly will be in 3 day-a-week sessions for about a month. We are trying to find additional therapy time for her as she really wants to hit the training to reach her goals of becoming independent. This is true to her competitive nature.
Things are finally moving forward, and...
Yes, its been a good week!
Some relatives has come down for a third trip since the accident. They pointed out something to me... every trip she has made there have been dramatic improvements in the movement of Molly's arm and neck. I suppose that we are too close to the situation and cannot see that improvements as a whole are significant!
On Wednesday Molly wanted to show me something. I held her right wrist while she lifted her hand about an inch or so! WOW! This was one of the things we were waiting for. Previously there was only movement in the arm and shoulder. The therapists told Molly that when the wrist and hand got strong enough, the fingers should start moving. Hallelujah!
The hospital team that cares for Molly has decided that they need to keep Molly until August 6th! Hallelujah! We needed the extra days.
And today... today after work I got home and checked my email and found a short one from Molly. When I got to the hospital she told me she was able to craft the email herself! A special device enables Molly to s-l-o-w-l-y type a short message. But this opens up a whole new frontier for Molly and allows her some freedom! It is not easy for her to type out the words. (I had already been looking at voice recognition software for her) She's working hard and will get it done one way or the other!
Julie and I are busy revamping the house. We need widen some doorways, move furniture, and maybe, just maybe put down a wooden floor.
We will be converting the guest bath into a chair friendly area by removing the tub, re-tiling the entire area to make a shower with no floor impediments and rearranging the sink without any underneath interference. We can only accomplish this by removing the door and adjacent wall to the bath. We'll work it out...
We are turning the living room into a bedroom for Molly. She wants us to paint it pink... oh well, OK!
Some men from the church have indicated that they will oversee all this renovation. This, I believe, is the church in action; showing love in pure form.
A Bible Fellowship member has donated a hospital bed to us. We are most thankful. We need to find a hoist/lift for getting her out of bed and into her chair and we need to find a rear car lift to carry her chair while getting her to and from out-patient therapy once we get her home. If we can find a titanium chair at an affordable price then we can wait on the car lift.
Molly will be in 3 day-a-week sessions for about a month. We are trying to find additional therapy time for her as she really wants to hit the training to reach her goals of becoming independent. This is true to her competitive nature.
Things are finally moving forward, and...
Yes, its been a good week!
Friday, July 17, 2009
Friday July 17th
Hi folks!
Been a while since I have updated you on Molly I know. The urgency to do something of a breakthrough nature and the need to complete details are conflicting and draining.
Thanks to all who continue to help in so many ways!
The garage sale that Alicia (college girl in our neighborhood) came up with is taking on its own life. One neighbor is storing "out of the neighborhood" items in her garage and it is almost full!! Others in our great neighborhood are having bake sales, cooking on the grill to sell food and others are selling water.
Our family is so thankful for the love and caring they have shown us on Molly's behalf. The money will be used wisely on her behalf.
There has been an Irrevocable Trust set up for Molly. Anyone wishing to donate may make the check out to Molly Doyal Santiago Irrevocable Trust.
Also, if you know of any corporation, foundation, or individuals that wish to participate in any way, they would be able to make the donation at a Regions Bank in that account name. The trust is held at "arms length" from the Doyal family by a Trustee and is only allowed to assist in Molly's medical needs.
There are other fund raisers that are taking place:
-In Albany, Ga, my brother's church is having a cookout where the pastor cooks donated prime cuts of meat and the plates are bought by church members. They are are also having a special offering for Molly.
-In the Tampa area, there is a fundraiser going on the 31st of July for Molly's benefit. I will be elaborating on this in a separate e-mail.
Let me tell you what the official assessment (as of this week) on Molly's condition:
Feeding: needs maximum assistance
Grooming: total care
Hygene: total care
Dress: total care
Bed mobility: max assist
Rotation (finding different position in bed): max assist
Transfer (one place to another): max assist
Locomotion in wheelchair: w/assistance
Sounds discouraging doesn't it?
Now let me tell you the GOOD NEWS!
This week Molly was able to put her hand on her nose!!! She proudly proclaimed that she was now able to scratch her nose. Can the top of her head be far away?
She was able (with the assistance of special devices) to get one spoon full of food to her mouth!!! Can total self feeding be far away?
Wow!!! Great progress!!!
Both movements were with her right arm. She is not seeing movement this week in her hand or fingers but we are looking forward to next week. Her left arm continues to improve; needs more bilateral strength.
Pain management is improving and hopefully soon she will be able to decrease the assortment of medicines she takes.
Good news is best, right?
Discharge date from Tampa General Hospital is scheduled for July 30th. Our family would desire that she be under the care of attending physicians and skilled nursing another four weeks or so but the hospital states that it is no longer able to keep her.
Molly will be going to outpatient physical therapy 3 times a week for the next month, then...
We are still looking for an acute inpatient care program. Our option now is to learn as much as we possible can on primary care skills, prepare house for her with wheelchair and other space needs, transportation methods/lift/chair skills, etc...
Those of you close by, please come to the Samy Dr charity sale on Saturday morning starting at 8pm.
More later
Been a while since I have updated you on Molly I know. The urgency to do something of a breakthrough nature and the need to complete details are conflicting and draining.
Thanks to all who continue to help in so many ways!
The garage sale that Alicia (college girl in our neighborhood) came up with is taking on its own life. One neighbor is storing "out of the neighborhood" items in her garage and it is almost full!! Others in our great neighborhood are having bake sales, cooking on the grill to sell food and others are selling water.
Our family is so thankful for the love and caring they have shown us on Molly's behalf. The money will be used wisely on her behalf.
There has been an Irrevocable Trust set up for Molly. Anyone wishing to donate may make the check out to Molly Doyal Santiago Irrevocable Trust.
Also, if you know of any corporation, foundation, or individuals that wish to participate in any way, they would be able to make the donation at a Regions Bank in that account name. The trust is held at "arms length" from the Doyal family by a Trustee and is only allowed to assist in Molly's medical needs.
There are other fund raisers that are taking place:
-In Albany, Ga, my brother's church is having a cookout where the pastor cooks donated prime cuts of meat and the plates are bought by church members. They are are also having a special offering for Molly.
-In the Tampa area, there is a fundraiser going on the 31st of July for Molly's benefit. I will be elaborating on this in a separate e-mail.
Let me tell you what the official assessment (as of this week) on Molly's condition:
Feeding: needs maximum assistance
Grooming: total care
Hygene: total care
Dress: total care
Bed mobility: max assist
Rotation (finding different position in bed): max assist
Transfer (one place to another): max assist
Locomotion in wheelchair: w/assistance
Sounds discouraging doesn't it?
Now let me tell you the GOOD NEWS!
This week Molly was able to put her hand on her nose!!! She proudly proclaimed that she was now able to scratch her nose. Can the top of her head be far away?
She was able (with the assistance of special devices) to get one spoon full of food to her mouth!!! Can total self feeding be far away?
Wow!!! Great progress!!!
Both movements were with her right arm. She is not seeing movement this week in her hand or fingers but we are looking forward to next week. Her left arm continues to improve; needs more bilateral strength.
Pain management is improving and hopefully soon she will be able to decrease the assortment of medicines she takes.
Good news is best, right?
Discharge date from Tampa General Hospital is scheduled for July 30th. Our family would desire that she be under the care of attending physicians and skilled nursing another four weeks or so but the hospital states that it is no longer able to keep her.
Molly will be going to outpatient physical therapy 3 times a week for the next month, then...
We are still looking for an acute inpatient care program. Our option now is to learn as much as we possible can on primary care skills, prepare house for her with wheelchair and other space needs, transportation methods/lift/chair skills, etc...
Those of you close by, please come to the Samy Dr charity sale on Saturday morning starting at 8pm.
More later
Thursday, July 9, 2009
Thursday July 9th
Julie and I were in Molly's room last night. The usual was going on. I was logging into Molly's social sites on the notebook so she could see who was sending what and then sending greetings back.
Julie was changing dressings on her legs and generally getting her settled for the evening.
The attending physician came in and told Molly that there are some "things" she needed to know.
1. There will be a tri-port catheter system placed in her upper chest area (this we knew) on Thursday which will require her to undergo anesthesiology during the surgery
In addition to the blood clots discovered the day before last we are worried about...
2. Molly has an urinary track infection
3. She also has a lower abdominal muscle infection (how do you get that?)
4. Her left arm that has been immobilized for such a long period of time has decided to grow a bone to cover the elbow joint and they (Drs) will have to take care with that by disolving it ! That may have been the reason she had so much trouble in rehab with this arm besides the fact that it has a couple of fractures
This news was not received well by any of us in the room. We are tired of the negative reports! We want only positive things to flow around us now!
Molly understands the necessity of keeping a positive attitude and not letting herself slip into a depressed state.
Although she cried some, within a few minutes or so she told me to put the notebook back (on the table that hangs over the bed) She was determined to get her hand to the computer and work it herself! What seemed like an hour of great struggle and pure determination (really probably just 5+ minutes) she got her hand to the pad on the laptop. Although she could not maneuver the cursor (fingers don't work yet and arm doesn't always go where she tells it to) it was a great accomplishment to do just what she did. I had to tell her to quite for the evening because she was so drained of strength and concentration. I told her we would try tomorrow night and the next and the next... until she gets it!!!
I'm not sure I would be able to keep a positive attitude if I were in her shoes. Could you? Could you get up again after all the trauma she has received hit your body? I'm not sure I would. Could you keep your mind clear of negativity, when time after time and time again you hear the kind of news she has heard?
She is a fighter! She is tough!! She will prevail!!!
We are currently sending Molly's medical records to U of Miami, The Miami Project which was spurred by the Nick Buoniconti Fund. They are doing some great things there to help cure paralysis. Pray that Molly will be accepted by the sister hospital of the Miami Project, Jackson Memorial, which shares a lot of doctors that go from the advanced research to practical rehab. Then eventually into the Miami Project itself.
More later
Julie was changing dressings on her legs and generally getting her settled for the evening.
The attending physician came in and told Molly that there are some "things" she needed to know.
1. There will be a tri-port catheter system placed in her upper chest area (this we knew) on Thursday which will require her to undergo anesthesiology during the surgery
In addition to the blood clots discovered the day before last we are worried about...
2. Molly has an urinary track infection
3. She also has a lower abdominal muscle infection (how do you get that?)
4. Her left arm that has been immobilized for such a long period of time has decided to grow a bone to cover the elbow joint and they (Drs) will have to take care with that by disolving it ! That may have been the reason she had so much trouble in rehab with this arm besides the fact that it has a couple of fractures
This news was not received well by any of us in the room. We are tired of the negative reports! We want only positive things to flow around us now!
Molly understands the necessity of keeping a positive attitude and not letting herself slip into a depressed state.
Although she cried some, within a few minutes or so she told me to put the notebook back (on the table that hangs over the bed) She was determined to get her hand to the computer and work it herself! What seemed like an hour of great struggle and pure determination (really probably just 5+ minutes) she got her hand to the pad on the laptop. Although she could not maneuver the cursor (fingers don't work yet and arm doesn't always go where she tells it to) it was a great accomplishment to do just what she did. I had to tell her to quite for the evening because she was so drained of strength and concentration. I told her we would try tomorrow night and the next and the next... until she gets it!!!
I'm not sure I would be able to keep a positive attitude if I were in her shoes. Could you? Could you get up again after all the trauma she has received hit your body? I'm not sure I would. Could you keep your mind clear of negativity, when time after time and time again you hear the kind of news she has heard?
She is a fighter! She is tough!! She will prevail!!!
We are currently sending Molly's medical records to U of Miami, The Miami Project which was spurred by the Nick Buoniconti Fund. They are doing some great things there to help cure paralysis. Pray that Molly will be accepted by the sister hospital of the Miami Project, Jackson Memorial, which shares a lot of doctors that go from the advanced research to practical rehab. Then eventually into the Miami Project itself.
More later
Tuesday, July 7, 2009
Today is Tuesday, July 7th. Any more days run together. God really gave us a good thing when He broke down our week into 7 days. Gave us structure and a sense of time.
All this, if I don't remind myself, is lost to a endless incoming tide of urgency, things to be done, or one crisis after another coming in rising and falling rhythms.
But the waves are unpredictable and keep you off balance more than anything.
Today we were hit with a number of blood clots, at least one being major, residing in the left leg. The physicians immediately gave Molly shots to cure the problems and will continue to give her shots as well as tablets. This has interrupted Molly's schedule of therapy and sent her into a depressed state somewhat. Tonight she is better.
Discharge from the hospital here has been set on July 23rd. There is no way short of an outright miracle she will be ready to leave. A team of care givers set the date. We'll have to talk to them!!!
We are exploring U of Miami as an alternative for extended care. They have advanced studies and programs in paralysis.
The U of Alabama also has a good program I hear, and we will be investigating that also.
More later.
All this, if I don't remind myself, is lost to a endless incoming tide of urgency, things to be done, or one crisis after another coming in rising and falling rhythms.
But the waves are unpredictable and keep you off balance more than anything.
Today we were hit with a number of blood clots, at least one being major, residing in the left leg. The physicians immediately gave Molly shots to cure the problems and will continue to give her shots as well as tablets. This has interrupted Molly's schedule of therapy and sent her into a depressed state somewhat. Tonight she is better.
Discharge from the hospital here has been set on July 23rd. There is no way short of an outright miracle she will be ready to leave. A team of care givers set the date. We'll have to talk to them!!!
We are exploring U of Miami as an alternative for extended care. They have advanced studies and programs in paralysis.
The U of Alabama also has a good program I hear, and we will be investigating that also.
More later.
Friday, July 3, 2009
Its been such a busy week; Julie and I are trying to work some and at the same time come to the rehab center and spend time every evening. We also are trying to catch the educational classes here during the day at the hospital so we can understand all that is happening with Molly. This week we had a class on spinal cord injuries and the ways most people are affected by the severe trauma in their particular area. We also sat through therapy and learned some techniques of stretching and movements for Molly's limbs. And... we were given a short tutorial on how to operate Moo's new ride.
"The Ride" as seen in the picture is operated with a joy stick. (Molly can't operate it this week, so we'll try for next week.) This buggy will travel up to 10 mph, will recline to near horizontal, has lumbar support as well as auto seat and feet adjustments. There are other adjustments that can be made and we will all learn how to make them.
Molly swears that the rehab people enjoy pain! She is convinced they smile and are really motivated when a patient cries out in pain!!! After a therapy session she is totally exhausted. (see pics)
Movement in Molly's right arm is SLOWLY getting better. There is a little more movement this week than last. No movement in her fingers.
Left arm can be lifted A LITTLE!!! There is a brace on the left arm now which has a small hydraulic cylinder that aids in bending the arm. Bionic Molly! It can be seen in photos posted yesterday.
In addition to the arms... some tingling sensation has moved downward from the neck to the chest area. Slight, but it is there.
There is nothing going on in the legs right now EXCEPT... Julie was doing some things for Molly last night on her bed and as she was talking, she was saying that God would breathe life back into her legs. As she said this Julie blew air on Molly's feet. Molly, who can't see at that angel said, "Mom, what did you do?"
We hope it truly was felt. This is our #1 prayer right now that Moll's legs will begin to wake up!!! We thank God for the healing that He has begun to do in Molly and ask for full and complete healing.
Another concern is for the hospital to allow Molly to stay longer in rehab. Because of limited payments her insurance will make, the hospital cannot afford to keep her longer than July. We are still praying for a bed at Shepard's Spinal Center in Atlanta.
The pain that Molly feels is in her neck and shoulders. Its been a little over 2 weeks since they replaced the vertebrae and fused C4,5,6,7. It is very painful for her to move; sitting in the chair is a very laborious trial. She cannot sit up for very long without the pain becoming too much. At the same time... yet another doctor came in and said that Molly needed to start reducing the pain medicine.
Tomorrow is the 4th of July. We plan to take Molly outside at dark-thirty to see the firework display that will be displayed on Harbor Island, next to Davis Island this hospital is on. (See the pic of downtown and the water from her window!)
Everyone have a great weekend and catch updates next week!
God Bless you and your family!!!
"The Ride" as seen in the picture is operated with a joy stick. (Molly can't operate it this week, so we'll try for next week.) This buggy will travel up to 10 mph, will recline to near horizontal, has lumbar support as well as auto seat and feet adjustments. There are other adjustments that can be made and we will all learn how to make them.
Molly swears that the rehab people enjoy pain! She is convinced they smile and are really motivated when a patient cries out in pain!!! After a therapy session she is totally exhausted. (see pics)
Movement in Molly's right arm is SLOWLY getting better. There is a little more movement this week than last. No movement in her fingers.
Left arm can be lifted A LITTLE!!! There is a brace on the left arm now which has a small hydraulic cylinder that aids in bending the arm. Bionic Molly! It can be seen in photos posted yesterday.
In addition to the arms... some tingling sensation has moved downward from the neck to the chest area. Slight, but it is there.
There is nothing going on in the legs right now EXCEPT... Julie was doing some things for Molly last night on her bed and as she was talking, she was saying that God would breathe life back into her legs. As she said this Julie blew air on Molly's feet. Molly, who can't see at that angel said, "Mom, what did you do?"
We hope it truly was felt. This is our #1 prayer right now that Moll's legs will begin to wake up!!! We thank God for the healing that He has begun to do in Molly and ask for full and complete healing.
Another concern is for the hospital to allow Molly to stay longer in rehab. Because of limited payments her insurance will make, the hospital cannot afford to keep her longer than July. We are still praying for a bed at Shepard's Spinal Center in Atlanta.
The pain that Molly feels is in her neck and shoulders. Its been a little over 2 weeks since they replaced the vertebrae and fused C4,5,6,7. It is very painful for her to move; sitting in the chair is a very laborious trial. She cannot sit up for very long without the pain becoming too much. At the same time... yet another doctor came in and said that Molly needed to start reducing the pain medicine.
Tomorrow is the 4th of July. We plan to take Molly outside at dark-thirty to see the firework display that will be displayed on Harbor Island, next to Davis Island this hospital is on. (See the pic of downtown and the water from her window!)
Everyone have a great weekend and catch updates next week!
God Bless you and your family!!!
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