Ashley received her sixth of seven plasmapheresis treatments today. She is scheduled to receive her final treatment on Wednesday. Our hope is that she will go back to RIC on Thursday to continue rehabilitation.
We had a scare early Saturday morning. Just after midnight Ashley’s temperature started to rise. They began monitoring it more closely and they began placing ice packs on Ashley. By 7am the decision was to move her to ICU.
Jumping back a bit; on Friday she had a visit from old high school friends and later her brother Austin and relatives from Kentucky dropped by. Ashley was laughing with them and Mary and I had an opportunity to go out to dinner that evening. So the fever came as quite a surprise.
By the time the refrigerated blanket Ashley was placed on was able to reverse the fever’s climb Ashley reached a core temperate of 104.9. Needless to say we were very concerned. Ashley’s temperature slowly started to fall. It got down to 102.5 when they decided to give Ashley a break from the extreme cold she had to endure (the blanket temperature hovers around 39 degrees). When her temperature got back up to 103 degrees they turned the blanket back on, but it malfunctioned. By the time another one was placed under her and took affect the core temperature read hit 104.8.
As you might imagine our praying was going into overdrive. We also reached into the reservoir of prayers everyone has been offering up for Ashley. That brought results. Ashley’s temperature began to steadily fall she was tolerating the cold for an extended period. By 11:30 Saturday night her temperature dipped below 101. By Sunday morning her temperature was at (and sometimes below) 98.6.
On Monday Ashley was moved out of the ICU. She is still on the cooling blanket and she is still running a temperature, but nothing like Saturday.
The cause turned out to be an infection from an IV in Ashley’s arm. The doctor that first saw her Saturday morning suspected that and it was removed as soon as they could establish another IV.
Only time will tell how this latest infection will affect Ashley’s progress. She had not fully recovered from the infection that put her in the hospital at the beginning of November. The one thing that is obvious is that Ashley is a fighter. She is focused on getting better and she was not about to let this get the best of her.
We have every confidence that upon returning to RIC Ashley will jump right back into rehab and show us measurable improvement.
Ashley is in a new room with a new view. Fitting for the holiday shopping season she looks out on Water Tower Place. Now if that is not motivation for a 20 year old young lady to focus on getting better I don’t know what is!
Monday, November 26, 2007
Monday, November 19, 2007
November 19th
As I type Ashley is receiving her third plasmapheresis treatment this morning. Each of the two previous treatments have gone smoothly. They take less than one hour to complete. There will be four more treatments by Wednesday the 28th. Ashley will stay at least one more day at Northwestern Hospital for observation. It is then our hope to readmit Ashley to Rehabilitation Institute of Chicago (RIC).
Ashley’s room looks out on the Gaither building which is part of the hospital complex. But not to worry; just outside her room is a window that provides Ashley with a view of Michigan Ave at Erie St. She can watch the shoppers and see some of the lights put up during the festival of lights event last Friday.
We have been pleasantly surprised by the active physical therapy department here at the hospital. One of our biggest concerns was that for two weeks Ashley would not get physical therapy outside of what we could do in the room (basically range of motion). Not only did both physical and occupational therapists show up the first day, but they have an excellent therapy gym. Best of all Ashley has scheduled therapy times. In fact she was scheduled to go this morning, but the treatment was moved up and we had to cancel. I just received a call from the therapist saying they have her rescheduled for this afternoon. Fantastic!
One of the other differences between RIC and the hospital is wheelchairs. At RIC they measured Ashley and provided a custom set of wheels. It’s a bit different here. It’s kind of on a first come, first served basis. The model we got our hands on is interesting. It is wide enough to hold a pro football offensive lineman. The footrests on the other hand are more accommodating for a person under five feet in height. So we put pillows on Ashley’s sides to make her more comfortable. Another difference is no seatbelt, nor headrest. Mary rigged up both with sheets. The headrest is possible to put together because the chair has a high looping bar (like you see on an airport wheelchair, and makes me think of the sissy bars that were popular on bicycles when I was a kid). I don’t think we will be posting a picture of Ashley in the chair; not too flattering, but I think I have given you enough info to draw a mental picture.
While our hopes were for faster progress; this thanksgiving we will be thankful that we have Ashley, that we have been able to have her treated in some of the finest medical facilities in the country and for the comfort that has come from the prayers and support provided by all of you. Family, friends and faith. I can’t fathom anyone going through an ordeal like this without them. We are truly blessed in all three categories.
We wish you all a heartfelt and warm thanksgiving.
Ashley’s room looks out on the Gaither building which is part of the hospital complex. But not to worry; just outside her room is a window that provides Ashley with a view of Michigan Ave at Erie St. She can watch the shoppers and see some of the lights put up during the festival of lights event last Friday.
We have been pleasantly surprised by the active physical therapy department here at the hospital. One of our biggest concerns was that for two weeks Ashley would not get physical therapy outside of what we could do in the room (basically range of motion). Not only did both physical and occupational therapists show up the first day, but they have an excellent therapy gym. Best of all Ashley has scheduled therapy times. In fact she was scheduled to go this morning, but the treatment was moved up and we had to cancel. I just received a call from the therapist saying they have her rescheduled for this afternoon. Fantastic!
One of the other differences between RIC and the hospital is wheelchairs. At RIC they measured Ashley and provided a custom set of wheels. It’s a bit different here. It’s kind of on a first come, first served basis. The model we got our hands on is interesting. It is wide enough to hold a pro football offensive lineman. The footrests on the other hand are more accommodating for a person under five feet in height. So we put pillows on Ashley’s sides to make her more comfortable. Another difference is no seatbelt, nor headrest. Mary rigged up both with sheets. The headrest is possible to put together because the chair has a high looping bar (like you see on an airport wheelchair, and makes me think of the sissy bars that were popular on bicycles when I was a kid). I don’t think we will be posting a picture of Ashley in the chair; not too flattering, but I think I have given you enough info to draw a mental picture.
While our hopes were for faster progress; this thanksgiving we will be thankful that we have Ashley, that we have been able to have her treated in some of the finest medical facilities in the country and for the comfort that has come from the prayers and support provided by all of you. Family, friends and faith. I can’t fathom anyone going through an ordeal like this without them. We are truly blessed in all three categories.
We wish you all a heartfelt and warm thanksgiving.
Wednesday, November 14, 2007
November 14th
Ashley was transferred to Northwestern yesterday afternoon. She will start her treatment today, or tomorrow depending on internal hospital scheduling.
The treatment is called plasmapheresis. I would compare this to kidney dialysis. For fourteen days Ashley will have the proteins filtered from her blood in hopes of removing any proteins that maybe causing her auto-immune system to interfere with her recovery. Each treatment takes about 1 hour and is done right in her hospital room once per day.
It is our hope that this will have a positive impact on Ashley's recovery and that she will return to Rehabilitation Institute of Chicago for ongoing therapy after the treatment.
Your prayers are being felt by us, and we are confident that they will be answered.
The treatment is called plasmapheresis. I would compare this to kidney dialysis. For fourteen days Ashley will have the proteins filtered from her blood in hopes of removing any proteins that maybe causing her auto-immune system to interfere with her recovery. Each treatment takes about 1 hour and is done right in her hospital room once per day.
It is our hope that this will have a positive impact on Ashley's recovery and that she will return to Rehabilitation Institute of Chicago for ongoing therapy after the treatment.
Your prayers are being felt by us, and we are confident that they will be answered.
Tuesday, November 13, 2007
November 13th
We have decided to pursue the active treatment for Ashley. She will be admitted today to Northwestern Memorial Hospital next to the Rehabilitation Institute of Chicago (RIC). The course of treatment will be 14 days. After the treatment it is our hope she will be able to return to RIC and continue therapy.
Please pray that this course of treatment will aid Ashley in her recovery. Thank you for all your loving support of Ashley and our family.
Please pray that this course of treatment will aid Ashley in her recovery. Thank you for all your loving support of Ashley and our family.
Monday, November 12, 2007
November 12th
The highlight of last week centered on nutrition for Ashley. She has had an on-going, on-again-off-again issue with nausea. One look at the list of her medications points out the likely culprit. Almost every one of them lists nausea as a potential side affect.
As such the nutritionists and doctors have tried several strategies to overcome this problem. We don’t know if we have hit on the right combination, or if Ashley is just more able to fight the nausea back, but last week was her best week ever. We are hoping this is now one thing on the list of concerns we can put behind us.
In all Ashley did well in therapy last week. She started out strong right from the start and stayed at that level all week. The only set back we have seen since her trip to Northwestern Hospital a couple of weeks ago was her immediate head movement to track sound or movement. She is still turning her head, but not with the same frequency, nor a fluid as before.
Pain management may be what becomes a focus area. At times Ashley seems unable to get comfortable, but then with no change in medication she will sleep all night and have a good day. We think it is a combination of muscle cramps and neurological activity. Until we have a consistent communication method we can’t be sure.
This week we will likely make a major decision. We are discussing an active treatment for Ashley that may assist her recovery. Since her condition is so rare it is difficult for the doctors to even attach a percentage of likely success of it. The down side is that the treatment takes two weeks and Ashley would likely have to be transferred to the hospital. As such she would not receive therapy for that duration. Should the treatment have no measurable affect the loss of therapy during that time could be detrimental.
The neurologist is conferring with Ashley’s physiatrist (physical medicine doctor) to determine the possibility of continuing Ashley’s therapy at some level during the course of the procedure. We would appreciate your prayers for guiding us to make the right decision for Ashley.
Once again Ashley beamed as we read her the comments from the site. She also enjoyed the cards that have been mailed to her. She is fully aware of all the support she has and we know that along with all your prayers that is what has kept her spirits up. It is truly a gift that Ashley is able to keep a positive attitude and continues to persevere.
Chicago can’t wait for the traditional start to the Christmas shopping season. This Saturday Michigan Avenue hosts the Magnificent Mile Lights Festival. If the weather cooperates we plan to take Ashley out to enjoy the parade and fireworks along the Chicago River. We won’t be out too late since it gets dark so early the fireworks begin at 7:00.
As such the nutritionists and doctors have tried several strategies to overcome this problem. We don’t know if we have hit on the right combination, or if Ashley is just more able to fight the nausea back, but last week was her best week ever. We are hoping this is now one thing on the list of concerns we can put behind us.
In all Ashley did well in therapy last week. She started out strong right from the start and stayed at that level all week. The only set back we have seen since her trip to Northwestern Hospital a couple of weeks ago was her immediate head movement to track sound or movement. She is still turning her head, but not with the same frequency, nor a fluid as before.
Pain management may be what becomes a focus area. At times Ashley seems unable to get comfortable, but then with no change in medication she will sleep all night and have a good day. We think it is a combination of muscle cramps and neurological activity. Until we have a consistent communication method we can’t be sure.
This week we will likely make a major decision. We are discussing an active treatment for Ashley that may assist her recovery. Since her condition is so rare it is difficult for the doctors to even attach a percentage of likely success of it. The down side is that the treatment takes two weeks and Ashley would likely have to be transferred to the hospital. As such she would not receive therapy for that duration. Should the treatment have no measurable affect the loss of therapy during that time could be detrimental.
The neurologist is conferring with Ashley’s physiatrist (physical medicine doctor) to determine the possibility of continuing Ashley’s therapy at some level during the course of the procedure. We would appreciate your prayers for guiding us to make the right decision for Ashley.
Once again Ashley beamed as we read her the comments from the site. She also enjoyed the cards that have been mailed to her. She is fully aware of all the support she has and we know that along with all your prayers that is what has kept her spirits up. It is truly a gift that Ashley is able to keep a positive attitude and continues to persevere.
Chicago can’t wait for the traditional start to the Christmas shopping season. This Saturday Michigan Avenue hosts the Magnificent Mile Lights Festival. If the weather cooperates we plan to take Ashley out to enjoy the parade and fireworks along the Chicago River. We won’t be out too late since it gets dark so early the fireworks begin at 7:00.
Monday, November 5, 2007
November 5th
I think we can say Ashley has sprung back from the setback she had from battling the infection from last weekend.
Over the weekend and especially today Ashley was showing marked improvement. Whereas she was more irritable during the first few days back from Northwestern Hospital, the last couple of nights she slept well and was looking around more and seemed more comfortable.
Ashley had made significant progress just over a week ago in moving her head and locating sources of sound and tracking them. Then the infection threw her for a loop. Now she is making up for that.
In physical therapy today she was in a supported standing position for nearly 30 minutes. That is the longest she has had her weight on her feet yet. During occupational therapy her task was to place pegs in a board. She needed assistance, but it was apparent that she was concentrating quite hard looking back and forth from the board to the container of pegs. Toward the end she was showing frustration with her lack of eye-hand coordination, but that in itself is a sign of progress that she is focusing in on a task and has the desire to complete it.
Even though the cold weather is moving in Ashley is getting bundled up and taking on the windy city with trips to the park a block away and even going to the neighborhood grocery store with Mary.
Ashley’s original return date was a week from this coming Friday (November 16th) but now her doctor is considering an extension. We are for Ashley staying longer especially due to setback and the rebound she is now making.
Over the weekend and especially today Ashley was showing marked improvement. Whereas she was more irritable during the first few days back from Northwestern Hospital, the last couple of nights she slept well and was looking around more and seemed more comfortable.
Ashley had made significant progress just over a week ago in moving her head and locating sources of sound and tracking them. Then the infection threw her for a loop. Now she is making up for that.
In physical therapy today she was in a supported standing position for nearly 30 minutes. That is the longest she has had her weight on her feet yet. During occupational therapy her task was to place pegs in a board. She needed assistance, but it was apparent that she was concentrating quite hard looking back and forth from the board to the container of pegs. Toward the end she was showing frustration with her lack of eye-hand coordination, but that in itself is a sign of progress that she is focusing in on a task and has the desire to complete it.
Even though the cold weather is moving in Ashley is getting bundled up and taking on the windy city with trips to the park a block away and even going to the neighborhood grocery store with Mary.
Ashley’s original return date was a week from this coming Friday (November 16th) but now her doctor is considering an extension. We are for Ashley staying longer especially due to setback and the rebound she is now making.
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