We have taken too long to update you about Charissa's journey since the last post following her surgery. Thank you for continuing to pray for her and for us during this time. We have definitely felt the effect.
Charissa was at Johns Hopkins for 11 days, and it was a rough road. She had many difficulties along the way: adjusting to the intestinal feeding tube (J-tube), stabilizing her electrolytes (requiring four blood draws a day), motility issues, and pain (which she couldn't really take medication for because of how it would affect her body in other ways). But God's overwhelming kindness and care were evident in big things, as well as little things. Whether it was a low time during the middle of the night or a painful procedure during the day or just feeling overwhelmed by the whole situation, God would often send another believer to encourage her on top of the wonderful encouragement and care she was already receiving from the nursing staff.
One evening when she was finding it particularly difficult to face the night, Charissa was surprised by the nursing staff to be offered a private room across the hall. It had the best view on the floor, looking out onto downtown Baltimore with its beautiful skyline at night. On top of that, they gave us a rollaway bed for someone to stay with Charissa where previously there had only been a standard upright chair. Her sister, Tiffany, was able to stay with her that night, and Bill and I were able to go to a local hotel which someone had anonymously paid for during our time at Hopkins. (We had been driving back to Gaithersburg each night between 1 and 3 am, then returning to Baltimore the next morning.) This was a huge help and made all the difference for us. We could also leave our car in the parking garage and take a shuttle back and forth to the hospital. Because Charissa had a private room, she was able to have many of her siblings come at different times and stay past visiting hours which was such an encouragement to her.
Charissa has been home a little over two weeks now, and the transition was challenging (stairs, no hospital bed, new routine, besides difficult physical symptoms). She is on 24-hour continuous feeding and they have slowly increased her rate over this time to gain more calories. She is not eating anything by mouth at this time so some of her symptoms have improved, but she is still dealing with many of her previous symptoms as well as a number of new ones. After the tube feeding began, her weight continued to drop but it has stabilized and is now starting to turn upward. She has had weekly trips back to her physician at Hopkins who is monitoring her very closely. She also has a home health nurse weekly and home PT three times a week.
The doctor's current plan is to see if Charissa can be restored nutritionally as much as possible before proceeding with more extensive testing. This is the main focus medically as well as for prayer. If she does not progress with the intestinal feeding tube, he will switch her to TPN (total parenteral nutrition by a central line) which he does not want to do because it has a high risk of serious infection. Additionally, it is not covered by insurance. So a few bullets for continued prayer:
Gratefully,
Bill and Judy
"I believe that I shall look upon the goodness of the LORD in the land of the living! Wait for the LORD; be strong, and let your heart take courage; wait for the LORD!" Psalm 27:13-14
Charissa was at Johns Hopkins for 11 days, and it was a rough road. She had many difficulties along the way: adjusting to the intestinal feeding tube (J-tube), stabilizing her electrolytes (requiring four blood draws a day), motility issues, and pain (which she couldn't really take medication for because of how it would affect her body in other ways). But God's overwhelming kindness and care were evident in big things, as well as little things. Whether it was a low time during the middle of the night or a painful procedure during the day or just feeling overwhelmed by the whole situation, God would often send another believer to encourage her on top of the wonderful encouragement and care she was already receiving from the nursing staff.
One evening when she was finding it particularly difficult to face the night, Charissa was surprised by the nursing staff to be offered a private room across the hall. It had the best view on the floor, looking out onto downtown Baltimore with its beautiful skyline at night. On top of that, they gave us a rollaway bed for someone to stay with Charissa where previously there had only been a standard upright chair. Her sister, Tiffany, was able to stay with her that night, and Bill and I were able to go to a local hotel which someone had anonymously paid for during our time at Hopkins. (We had been driving back to Gaithersburg each night between 1 and 3 am, then returning to Baltimore the next morning.) This was a huge help and made all the difference for us. We could also leave our car in the parking garage and take a shuttle back and forth to the hospital. Because Charissa had a private room, she was able to have many of her siblings come at different times and stay past visiting hours which was such an encouragement to her.
Charissa has been home a little over two weeks now, and the transition was challenging (stairs, no hospital bed, new routine, besides difficult physical symptoms). She is on 24-hour continuous feeding and they have slowly increased her rate over this time to gain more calories. She is not eating anything by mouth at this time so some of her symptoms have improved, but she is still dealing with many of her previous symptoms as well as a number of new ones. After the tube feeding began, her weight continued to drop but it has stabilized and is now starting to turn upward. She has had weekly trips back to her physician at Hopkins who is monitoring her very closely. She also has a home health nurse weekly and home PT three times a week.
The doctor's current plan is to see if Charissa can be restored nutritionally as much as possible before proceeding with more extensive testing. This is the main focus medically as well as for prayer. If she does not progress with the intestinal feeding tube, he will switch her to TPN (total parenteral nutrition by a central line) which he does not want to do because it has a high risk of serious infection. Additionally, it is not covered by insurance. So a few bullets for continued prayer:
- Tolerate increased feeding rate over next several days
- Increased motility in her intestinal tract as well as through her whole GI system
- Relief from the multitude of challenging symptoms she experiences on a daily basis
- That she will gain weight while on the feeding tube (and avoid TPN)
- That she will be able to tolerate small amounts of water by mouth and eventually add back in food by mouth without severe physical symptoms
- Increased physical strength
- Ability to sleep (many sleepless night because of her symptoms)
- Endurance to persevere
- Trusting God in each moment of this trial
Gratefully,
Bill and Judy
"I believe that I shall look upon the goodness of the LORD in the land of the living! Wait for the LORD; be strong, and let your heart take courage; wait for the LORD!" Psalm 27:13-14
Dearest Bill, Judy, sweet Charissa and family,
ReplyDeleteMay our Lord continue to upgird you and strengthen you in your most holy faith. Thank you for taking time to post the update and specific ways to pray. May His grace continue to be poured out in abundance upon you all. My heart and prayers are with you all. ~Margie
Thank you so much for this update. I will be praying for Charissa and your whole family. So grateful for your example of seeking after and delighting in God during this very difficult season. He promises to bless us as we do(Ps. 37:4-6) and He will sustain and keep you (Is. 43:1-5).
ReplyDelete~Deborah
Dear Bill and Judy, Thank you so much for the update. Bethany passed it on to us. We are praying for you and for Charissa. May this Scripture encourage you all:
ReplyDelete"May the God of hope give you joy and faith in believing, that by the power of the Holy Spirit you may abound in hope". Romans 15:13
Much love, Liz