Rachel came home Friday afternoon. Today is Sunday. The place where her lumbar drain exited her back has remained dry. She goes back to Children's Hospital on Tuesday to get some of her stitches removed.
Please pray for her continued healing.
Sunday, August 24, 2014
Wednesday, August 20, 2014
Updated update
Steve is with Rachel right now and just now called and said that they are moving everything up to now. I am not sure why, but I am glad. So they are getting ready to take the drain out, do a pressure test, and do a ct scan under sedation. Please pray it goes well and her body is healed, and healing.
Tuesday, August 19, 2014
Still in the hospital ...
UPDATE (Wednesday morning):
There has not been any observed leakage of cerebral spinal fluid (CSF) through the incision since they installed the lumbar drain 7 days ago. This is good and we are hopeful that the incision from the initial surgery has been able to fully heal as a result. However, there has been some CSF leakage at the point where the drain itself exits Rachel's lower back.
The most recent plan (as of Wednesday morning) is to remove the lumbar drain on Thursday, then wait an additional day or two to make sure there is no CSF leakage through the incision or the drain site before allowing Rachel to go home.
Please pray for no more leakage today, tonight, and after they take the drain out. Please pray for the normal process of csf re-absorption to happen. Please pray for wisdom for us and for the doctors. Also, please continue to pray for peace of mind, traveling mercies, and efficient and restful sleep as we juggle having one of us at the hospital 24/7 with Rachel and the other trying to keep things halfway sane at home. We are so thankful for Sarah's brothers and their families helping us and for several people at church who brought meals. It has helped so much!
There has not been any observed leakage of cerebral spinal fluid (CSF) through the incision since they installed the lumbar drain 7 days ago. This is good and we are hopeful that the incision from the initial surgery has been able to fully heal as a result. However, there has been some CSF leakage at the point where the drain itself exits Rachel's lower back.
The most recent plan (as of Wednesday morning) is to remove the lumbar drain on Thursday, then wait an additional day or two to make sure there is no CSF leakage through the incision or the drain site before allowing Rachel to go home.
Please pray for no more leakage today, tonight, and after they take the drain out. Please pray for the normal process of csf re-absorption to happen. Please pray for wisdom for us and for the doctors. Also, please continue to pray for peace of mind, traveling mercies, and efficient and restful sleep as we juggle having one of us at the hospital 24/7 with Rachel and the other trying to keep things halfway sane at home. We are so thankful for Sarah's brothers and their families helping us and for several people at church who brought meals. It has helped so much!
Saturday, August 16, 2014
Rachel is still in good spirits, but tired of being at the hospital ...
All the nurses have fallen in love with Rachel and her sweet personality. She is doing well, especially considering how active she likes to be and the fact that she can't get out of bed and run around because of the CSF drain.
They initially were draining off 20 cc of CSF every hour. They dropped that down to 15 and also started adjusting the height of the drain outlet relative to her body so they could slowly but continually drain off 15 cc per hour rather than draining it down all at once each hour.
Today (Saturday) she had some CSF in her bandages around the incision, so they are going to increase the target drainage output from 15 to 17 cc per hour.
Also, Dr. Mapstone mentioned a couple days ago that they want to do a pressure study wherein they monitor and record her internal CSF pressures over time. That will require her spending a day in ICU. We are guessing that might happen Monday or Tuesday.
Yesterday (Friday) morning, Sarah's brother Michael was sitting with Rachel while Sarah and Steve were transitioning a switch in responsibilities for the day (Sarah going Stillwater, Steve staying at the hospital). Rachel had a dirty diaper that got her pants dirty. After Michael changed her diaper and started to put clean pants on her, Rachel started screaming "buckey, buckey" and pointing at her diaper. Finally, frustrated by Rachel's persistent and loud exclamations, Michael called Sarah for an interpretation of what "buckey" might mean. Sarah informed Michael that "buckey" means "pockets". Rachel sometimes fusses over wanting to wear pants with pockets.
Later in the day, she decided to take off her pink shorts (with pockets) and wear them on her head:
They initially were draining off 20 cc of CSF every hour. They dropped that down to 15 and also started adjusting the height of the drain outlet relative to her body so they could slowly but continually drain off 15 cc per hour rather than draining it down all at once each hour.
Today (Saturday) she had some CSF in her bandages around the incision, so they are going to increase the target drainage output from 15 to 17 cc per hour.
Also, Dr. Mapstone mentioned a couple days ago that they want to do a pressure study wherein they monitor and record her internal CSF pressures over time. That will require her spending a day in ICU. We are guessing that might happen Monday or Tuesday.
Yesterday (Friday) morning, Sarah's brother Michael was sitting with Rachel while Sarah and Steve were transitioning a switch in responsibilities for the day (Sarah going Stillwater, Steve staying at the hospital). Rachel had a dirty diaper that got her pants dirty. After Michael changed her diaper and started to put clean pants on her, Rachel started screaming "buckey, buckey" and pointing at her diaper. Finally, frustrated by Rachel's persistent and loud exclamations, Michael called Sarah for an interpretation of what "buckey" might mean. Sarah informed Michael that "buckey" means "pockets". Rachel sometimes fusses over wanting to wear pants with pockets.
Later in the day, she decided to take off her pink shorts (with pockets) and wear them on her head:
Wednesday, August 13, 2014
Surgery went well ... Rachel is resting.
After the surgery, the neurosurgeon said that they found a hole in the dura (the outer covering of the spinal cord). They are fairly confident that her problem is related to overproduction and under-absorption of cerebral spinal fluid (CSF) and that her body just needs time to adjust. They decided to use the existing hole in the dura as the temporary drain site, but snaked the drain though intact muscle tissue so they can remove it without creating another incision.
So, she is back in her regular hospital room and resting. The valve on the drain line has to be opened hourly to allow the excess CSF to drain out (about 20 cc per hour). Now it is just a waiting game -- waiting for her incision to heal and for her body to reach equilibrium in terms of CSF production and absorption.
Dr. Mapstone had previously mentioned a possible connection between her tethered cord and the enlarged ventricles in her brain -- due to the cord pulling down on the base of the brain and not allowing the CSF to flow freely, thus requiring her body to produce excess CSF in the brain in order to force enough CSF into her spinal cord.
It is possible that the release of the tether freed up some of that restricted flow (which, if so, would be a good thing), but that her body is still producing extra CSF and has not yet recognized that it is okay to slow down production. This is all conjecture, but seems to be a plausible explanation.
Please pray for her body to quickly reach proper equilibrium in this area of CSF production, transport, and absorption, and that once she becomes more active, she will be able be mobile without damaging the drain location.
Also, all the boys start school this week and next, so please pray that we are able to coordinate all that needs to happen to get them started off well.
So, she is back in her regular hospital room and resting. The valve on the drain line has to be opened hourly to allow the excess CSF to drain out (about 20 cc per hour). Now it is just a waiting game -- waiting for her incision to heal and for her body to reach equilibrium in terms of CSF production and absorption.
Dr. Mapstone had previously mentioned a possible connection between her tethered cord and the enlarged ventricles in her brain -- due to the cord pulling down on the base of the brain and not allowing the CSF to flow freely, thus requiring her body to produce excess CSF in the brain in order to force enough CSF into her spinal cord.
It is possible that the release of the tether freed up some of that restricted flow (which, if so, would be a good thing), but that her body is still producing extra CSF and has not yet recognized that it is okay to slow down production. This is all conjecture, but seems to be a plausible explanation.
Please pray for her body to quickly reach proper equilibrium in this area of CSF production, transport, and absorption, and that once she becomes more active, she will be able be mobile without damaging the drain location.
Also, all the boys start school this week and next, so please pray that we are able to coordinate all that needs to happen to get them started off well.
Tuesday, August 12, 2014
Surgery tomorrow (Wednesday), then another week in the hospital ...
It's not as bad as it sounds, but it looks like Rachel will be spending another week here at Children's Hospital.
Her incision is still leaking cerebral spinal fluid (CSF) and the neurosurgery team has decided the best course of action is to re-open the incision first thing tomorrow (Wednesday) morning to find and fix the leak and also to install a temporary drain in her back. The drain will allow any excess CSF to leave in a controlled way so that it will not be trying to exit the incision. That will give the incision a much better opportunity to heal. It also means that she will not be restricted to staying horizontal -- a huge plus.
Dr. Mapstone said that the recovery from this surgery will be much easier than the surgeries two weeks ago. We are hoping that she will be able to stay in a regular room after the surgery and not have to spend time in ICU.
She has to stay in the hospital until they are able to remove the drain (then probably another day to monitor the healing process at the drain site). So that's why we are expecting her to be here another week or so.
Rachel is in good spirits and is being well taken care of here. We are so-o-o-o thankful that there are no signs of infection. At this point, the doctors are just trying to clear away the obstacles that are keeping her body from performing the normal healing process that God so amazingly designed into it.
Her incision is still leaking cerebral spinal fluid (CSF) and the neurosurgery team has decided the best course of action is to re-open the incision first thing tomorrow (Wednesday) morning to find and fix the leak and also to install a temporary drain in her back. The drain will allow any excess CSF to leave in a controlled way so that it will not be trying to exit the incision. That will give the incision a much better opportunity to heal. It also means that she will not be restricted to staying horizontal -- a huge plus.
Dr. Mapstone said that the recovery from this surgery will be much easier than the surgeries two weeks ago. We are hoping that she will be able to stay in a regular room after the surgery and not have to spend time in ICU.
She has to stay in the hospital until they are able to remove the drain (then probably another day to monitor the healing process at the drain site). So that's why we are expecting her to be here another week or so.
Rachel is in good spirits and is being well taken care of here. We are so-o-o-o thankful that there are no signs of infection. At this point, the doctors are just trying to clear away the obstacles that are keeping her body from performing the normal healing process that God so amazingly designed into it.
Monday, August 11, 2014
At least 3 more days in the hospital ...
UPDATE (Monday evening):
The doctors came in early this morning and saw a small amount of fluid leaking out of Rachel's incision. Later in the morning, as the neurosurgeon started pressing around the incision site, quite a bit of additional fluid came out.
Although the fluid was clear, they were concerned about a possible infection. So, they ordered a CT scan of her head and spine and decided to keep her NPO (no food or water) in case they needed to do emergency surgery. Getting a CT scan of her head was a major ordeal for her. It took two separate trips to the scanner. During the first attempt, she would not stay still enough, even though she was highly medicated. So, they had to try again later using conscious sedation, and that worked.
The results of the CT scan showed no obvious signs of infection and thus no need for emergency surgery. Once she was able to have food and drink again, she was mostly calm and peaceful. She finally fell asleep around 18:30 (after being up since 5:30).
They have tentatively scheduled her for surgery for Wednesday, in the event that the incision does not stop leaking before then. They are hoping to stop the external leaking by physical means (they added a couple additional sutures and have applied a pressure bandage and are "requiring" that she stay horizontal as much as possible) so that natural healing can take place on the inside. If her body isn't able to shut down the leak on its own, they will reopen the wound to try to find the exact location of the problem to attempt to fix it.
Apparently, the brain and spinal cord rely on a fairly complex fluid flow system involving the production of cerebral spinal fluid in the brain, transport of the fluid through ventricles in the brain and along the spinal cord, and absorption of the fluid into the surrounding tissues -- with the body regulating those three subsystems to keep them all in balance.
The neurosurgeon said that she might be experiencing excess fluid pressure as her body attempts to adjust to the changes associated with the dethering. If the leak does not stop on its own and if it cannot be stopped by reopening the incision, she might need a temporary shunt (in the back of her head) to reduce the fluid pressure, to stop the fluid from wanting to escape through the incision, to allow the incision to properly heal. If they have to go that route, there is also a risk that the shunt might need to be permanent.
The doctors came in early this morning and saw a small amount of fluid leaking out of Rachel's incision. Later in the morning, as the neurosurgeon started pressing around the incision site, quite a bit of additional fluid came out.
Although the fluid was clear, they were concerned about a possible infection. So, they ordered a CT scan of her head and spine and decided to keep her NPO (no food or water) in case they needed to do emergency surgery. Getting a CT scan of her head was a major ordeal for her. It took two separate trips to the scanner. During the first attempt, she would not stay still enough, even though she was highly medicated. So, they had to try again later using conscious sedation, and that worked.
The results of the CT scan showed no obvious signs of infection and thus no need for emergency surgery. Once she was able to have food and drink again, she was mostly calm and peaceful. She finally fell asleep around 18:30 (after being up since 5:30).
They have tentatively scheduled her for surgery for Wednesday, in the event that the incision does not stop leaking before then. They are hoping to stop the external leaking by physical means (they added a couple additional sutures and have applied a pressure bandage and are "requiring" that she stay horizontal as much as possible) so that natural healing can take place on the inside. If her body isn't able to shut down the leak on its own, they will reopen the wound to try to find the exact location of the problem to attempt to fix it.
Apparently, the brain and spinal cord rely on a fairly complex fluid flow system involving the production of cerebral spinal fluid in the brain, transport of the fluid through ventricles in the brain and along the spinal cord, and absorption of the fluid into the surrounding tissues -- with the body regulating those three subsystems to keep them all in balance.
The neurosurgeon said that she might be experiencing excess fluid pressure as her body attempts to adjust to the changes associated with the dethering. If the leak does not stop on its own and if it cannot be stopped by reopening the incision, she might need a temporary shunt (in the back of her head) to reduce the fluid pressure, to stop the fluid from wanting to escape through the incision, to allow the incision to properly heal. If they have to go that route, there is also a risk that the shunt might need to be permanent.
Sunday, August 10, 2014
Quick update ...
UPDATE (Sunday evening): Rachel's incision was leaking again this morning (with a yellowish tint to the fluid this time) and she was running a fever. The neurosurgeon was concerned about infection, so they started her on IV antibiotics.
The incision did not seem to leak at all throughout the rest of the day, though. Our understanding right now is that she needs to be leak-free and fever-free for 24 hours before they will let her go home.
Rachel is in good spirits, but she is once again saying she wants to go "bye" (go home). She did have the IV in her hand go bad today; getting a new IV started was a traumatic event for her.
Thank you for your continued prayers!
Saturday, August 9, 2014
Home for a week ... then back to the hospital.
Rachel was moved from ICU to a normal room around noon last Friday (8/1). She was doing so well, that they discharged her the next morning.
She had a good week at home. She rarely complained of any pain or discomfort. She was pretty much normal, sporting her infectious smile most of the time. The only medication she needed was ibuprofen a couple times per day. We did let her spend extra time just lying around watching movies (she watched Lady and the Tramp what seems like 15-20 times).
Yesterday (Friday) afternoon, however, she had a slight fever and was kind of mopey. Sarah took her to the walk-in clinic to see if she might need antibiotics. The PA at the clinic would not prescribe any antibiotics without first getting a urine sample, so they sent her home with a cup to collect a urine specimen to bring back in the morning.
This morning, Sarah noticed that the lowest portion of Rachel's incision (just below the waistline) was leaking clear fluid (cerebral spinal fluid, CSF). So, instead of going back to the walk-in clinic, Sarah took Rachel to the ER at Children's Hospital in OKC. The neurosurgeon there said they need to re-suture the place where it is leaking, keep her overnight, then see if that stops the CSF leak.
So, this afternoon they gave her a Lidocaine shot, then put in a couple extra stitches. Other than the initial pain of the shot, she got the new stitches without incident and the external leaking has stopped for now.
Please join us in praying for God to heal her at the source of the leak.
She had a good week at home. She rarely complained of any pain or discomfort. She was pretty much normal, sporting her infectious smile most of the time. The only medication she needed was ibuprofen a couple times per day. We did let her spend extra time just lying around watching movies (she watched Lady and the Tramp what seems like 15-20 times).
Yesterday (Friday) afternoon, however, she had a slight fever and was kind of mopey. Sarah took her to the walk-in clinic to see if she might need antibiotics. The PA at the clinic would not prescribe any antibiotics without first getting a urine sample, so they sent her home with a cup to collect a urine specimen to bring back in the morning.
This morning, Sarah noticed that the lowest portion of Rachel's incision (just below the waistline) was leaking clear fluid (cerebral spinal fluid, CSF). So, instead of going back to the walk-in clinic, Sarah took Rachel to the ER at Children's Hospital in OKC. The neurosurgeon there said they need to re-suture the place where it is leaking, keep her overnight, then see if that stops the CSF leak.
So, this afternoon they gave her a Lidocaine shot, then put in a couple extra stitches. Other than the initial pain of the shot, she got the new stitches without incident and the external leaking has stopped for now.
Please join us in praying for God to heal her at the source of the leak.
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