Many have been asking how things are going with Lexi and what the nuerosurgeon from Toledo said on Friday. And so- it's time for an update!
We went to Toledo- St V's hospital on Friday and met with a pediatric neurosurgeon. She spent almost an hour talking with us and looking over Lexi's MRI studies. This Dr. said that, based on Lexi's current "symptoms" (or lack thereof), that she would actually NOT operate right now. She would keep a very close eye on her, do repeat MRIs every 2-3 months and try to get her a little bigger. She also feels strongly (and says studies have shown) that Lexi should have the dura patch done as well as the bone removal. During the dura patch, the brain itself is actually opened which increases the chance of spinal fluid leaking out. This would mean a much more extensive hospital stay and MUCH more recovery time.
We then went to Cleveland Clinic on Monday to see the sleep neurologist. Lexi does have central sleep apnea- every so often,, her brain "forgets" to tell her body to breathe. They do feel it is fairly mild and that her chiari and severe reflux are the cause. The Dr would like us to have the chiari surgery and possibly a fundoplication surgery (where they actually wrap the stomach around the esophagus and sew it into place to help with reflux). He thinks this will help significantly with her sleep apnea. Until (and IF) these surgeries are done, there is nothing they will do right now for the apnea (except we're supposed to keep checking on her to make sure she's breathing!)
Finally, we also spoke with Lexi's neurologist at Cleveland Clinic. Lexi is actually on an upswing right now. She is babbling, getting on all 4's and rocking, and really starting to smile and interact. We are so hesitant to put her through another surgery right now and interrupt this improvement! The neurologist was to talk personally with the neurosurgeon at Cleveland Clinic today. In addition, he would like us to get a THIRD opinion at Rainbow Babies/University Hospital in Cleveland. We are hoping to hear back from the neurologist tomorrow.
We will keep everyone posted and are very anxious to make a final decision. We hate to constant back and forth on this decision. However, we know that Lexi will eventually have to have this brain surgery. The question will be- what's eventually? 2 weeks from now or 2 years from now? Unfortunately, this is not a decision ANY parent ever wants to make and we are facing a great deal of stress and uncertainty over the entire situation. Your prayers are greatly appreciated! For now, Lexi's brain surgery remains scheduled for May 12th- 21 days from now!
Wednesday, April 21, 2010
Wednesday, April 7, 2010
April 7-More opinions and more surgery
Lexi was released from the hospital on March 18th. She was in for 4 days total. She has been on breathing treatments 1-2 times a day since she has been home. We will continue these through the end of RSV season, which will be the end of April. The doctors also said that with her "compromised lungs" she will most likely need breathing treatments any time she even gets a cold for the next year! I didn't realize RSV and pneumonia can have such a lasting effect!
Since coming home from the hospital, Lexi has really taken off! She is babbling- she "says" dada, papa and few other things we can't make out. I'm still upset that she didn't say "Mama" first, but I'll forgive her:-) She also gets onto all fours AND goes from laying to sitting up all be herself!! We have been amazed! She also ate 5 TBSP of baby food in one setting this past weekend- that's HUGE for her!!
We went to Cleveland Clinic yesterday and saw the feeding clinic, speech and opthomology. The Feeding clinic would like us to try new foods with Lexi- not just veggies and fruit. This can become a bit complicated, however, since everything seems to have milk or eggs in it! In Opthomology, my suspicion was confirmed- Lexi's eyes are still not straight. They are definitely STRAIGHTER. She is also starting to favor her left eye because her right eye is still turned in. So we will now patch her left eye again for one-hour a day and then see optho after chiari surgery in June to schedule ANOTHER eye surgery (ugh!).
Finally, I have been reading a book called "Light Will Emerge" written by a woman who dealt with her children having chiari surgeries. From reading this book, we have decided to get one more outside opinion before we move forward with Lexi's brain surgery. We see a pediatric neurosurgeon at Toledo Children's hospital on April 16th. The author, Kaci King, also agreed to speak with me about her childs' experiences. She is calling me tomorrow evening. I'm really looking forward to talking to a parent who went through the exact same surgery when her little boy was 17 months!
Please continue to pray for patience for our family and that we can find time to work on all of Lexi's therapies- speech, OT, PT and feeding.
Please pray for our appointment on April 16th. We're asking for wisdom and guidance from this doctor!
We'll post more after Lexi's April 16th appointment!
Since coming home from the hospital, Lexi has really taken off! She is babbling- she "says" dada, papa and few other things we can't make out. I'm still upset that she didn't say "Mama" first, but I'll forgive her:-) She also gets onto all fours AND goes from laying to sitting up all be herself!! We have been amazed! She also ate 5 TBSP of baby food in one setting this past weekend- that's HUGE for her!!
We went to Cleveland Clinic yesterday and saw the feeding clinic, speech and opthomology. The Feeding clinic would like us to try new foods with Lexi- not just veggies and fruit. This can become a bit complicated, however, since everything seems to have milk or eggs in it! In Opthomology, my suspicion was confirmed- Lexi's eyes are still not straight. They are definitely STRAIGHTER. She is also starting to favor her left eye because her right eye is still turned in. So we will now patch her left eye again for one-hour a day and then see optho after chiari surgery in June to schedule ANOTHER eye surgery (ugh!).
Finally, I have been reading a book called "Light Will Emerge" written by a woman who dealt with her children having chiari surgeries. From reading this book, we have decided to get one more outside opinion before we move forward with Lexi's brain surgery. We see a pediatric neurosurgeon at Toledo Children's hospital on April 16th. The author, Kaci King, also agreed to speak with me about her childs' experiences. She is calling me tomorrow evening. I'm really looking forward to talking to a parent who went through the exact same surgery when her little boy was 17 months!
Please continue to pray for patience for our family and that we can find time to work on all of Lexi's therapies- speech, OT, PT and feeding.
Please pray for our appointment on April 16th. We're asking for wisdom and guidance from this doctor!
We'll post more after Lexi's April 16th appointment!
Wednesday, March 17, 2010
March 17th- Change of Plans1
We got a little bit of a surprise on Monday morning. I took Lexi to her therapy and realized she was sounding really wheezy. So we checked her pulse ox and it was in the low 90s. I called the hospital pedicatrician and they agreed to see her in the ER. After a series of testing, bloodwork and X-rays, it turns out poor Lexi Mae has pneumonia and RSV (a virus that attacks small children's respiratory system). With Lexi being a heart baby, this becomes a bigger deal. She is at Blanchard Valley Hospital on the ICU wing.
Today, she is just having a rough time "turning the corner" to feeling better. The pedaitric hospitlists said he's heard 80 year old women who have sounded better than Lexi. They are giving her treatments every 3 hours today to try to knock this out of her and also have her on steroids to help her lungs. Every time they try to take her off her oxygen, her pluse-ox drops into the 80s (it's supposed to be 100). Pleaase pray Lexi will show big improvements today!
As far as her brain surgery goes, we spoke with the cardiologist and neurosurgeon yesterday. They are post-poning her surgery until May 12th as she needs 2 months for her lungs to heal. We're actually thankful that they are post-poning the surgery because after this unexpected stay. I can't imagine turning around and being in the hospital for 10 days next week.
Please keep Lexi n your prayers. Please also pray for my family as they are once again juggling the twins around. Jon is working during the day and coming to the hospital in the evenings so I can run and see the twins for an hour or so before he comes back home and puts them to bed. We are hoping to come on by Friday, but it's completely up to Lexi!
Thank you for your prayers!
Today, she is just having a rough time "turning the corner" to feeling better. The pedaitric hospitlists said he's heard 80 year old women who have sounded better than Lexi. They are giving her treatments every 3 hours today to try to knock this out of her and also have her on steroids to help her lungs. Every time they try to take her off her oxygen, her pluse-ox drops into the 80s (it's supposed to be 100). Pleaase pray Lexi will show big improvements today!
As far as her brain surgery goes, we spoke with the cardiologist and neurosurgeon yesterday. They are post-poning her surgery until May 12th as she needs 2 months for her lungs to heal. We're actually thankful that they are post-poning the surgery because after this unexpected stay. I can't imagine turning around and being in the hospital for 10 days next week.
Please keep Lexi n your prayers. Please also pray for my family as they are once again juggling the twins around. Jon is working during the day and coming to the hospital in the evenings so I can run and see the twins for an hour or so before he comes back home and puts them to bed. We are hoping to come on by Friday, but it's completely up to Lexi!
Thank you for your prayers!
Saturday, March 13, 2010
Saturday, March 13th- Decision Made
After a lot of research, talking with many doctors and tons of praying, we have decided to move forward with brain surgery for Lexi. (Discussing it usually brings me to tears). We spoke with Lexi's neurologist and the neurosurgeon several times this past week, as well as her local hospital pediatrician and all 3 doctors feel it is best to move forward with Lexi having surgery. Lexi has some unexplained bouts of vomiting and fussiness, especially at night. She also has a significant chiari malformation (9-10mm) and the herniation is actually touching her first vertebra. The concern is, if we wait and do nothing, we may run into an emergency situation. With Lexi being a heart patient, she needs a special team, headed by a pediatric cardiac anesthesiologist, to do this surgery. Doing the surgery now ensures we won't run into any unplanned circumstances and that Lexi will receive the best and safest care possible.
Lexi's brain surgery is scheduled for Wednesday, March 24th. She will be the first patient of the day. The surgeon will remove about an inch of a block of bone at the base of her skull and, most likely, the first vertebra as well. If needed, they will also put a small mesh covering on her dura (covering of the brain) if removing the bone alone doesn't get rid of the pressure. She will be in surgery about 4 hours. The doctor is estimating her to be in ICU 3-4 days and in the hospital pediatric unit about 7-10 days.
Prayer Requests:
1. Pray for the team of doctors as they prepare for Lexi's surgery. Pray that the right people are put on her team so she will receive the best care possible. Lexi is "quite a bit younger" than most of the chiari patients that are operated on- and she is only 18 lbs. Please pray for steady hands for the neurosurgeon!
2. Pray for our fears of Lexi going through a second MAJOR surgery (and her 4th total surgery in 16 months). Her heart surgery was a nightmare and we are terrified for her. Please pray that everything goes according to plan! We would love to be home in time for Easter. Even if we can't be at church or with family, we would like to spend it at home with the twins!
3. Pray that we will be able to get a room at the Ronald McDonald House. I will be staying in the hospital room with Lexi, but Jon and my other family members that will be rotating help will need a place to stay. Otherwise, the cheapest hotel at Cleveland Clinic is at least $125 per night. Along with our meal expenses (the cafeteria is good but VERY expensive), this could become a very pricey 10 days. Unfortunately, the RMH at the Clinic goes on a first-come basis. We will not know if we have a room until after 2pm on the 23rd.
4. Finally, pray for the twins, Aleah and Elizabeth, as they will once again be gone from Mommy (and Daddy for part of the time). Jon will stay the 24th- 27th but has to return to work. They will also be bounced around quite a bit during the day while Jon works. Aleah is a mommy's girl and I think this is one of the more difficult parts of Lexi having another surgery- leaving my other 2 little ones again!
Lexi's brain surgery is scheduled for Wednesday, March 24th. She will be the first patient of the day. The surgeon will remove about an inch of a block of bone at the base of her skull and, most likely, the first vertebra as well. If needed, they will also put a small mesh covering on her dura (covering of the brain) if removing the bone alone doesn't get rid of the pressure. She will be in surgery about 4 hours. The doctor is estimating her to be in ICU 3-4 days and in the hospital pediatric unit about 7-10 days.
Prayer Requests:
1. Pray for the team of doctors as they prepare for Lexi's surgery. Pray that the right people are put on her team so she will receive the best care possible. Lexi is "quite a bit younger" than most of the chiari patients that are operated on- and she is only 18 lbs. Please pray for steady hands for the neurosurgeon!
2. Pray for our fears of Lexi going through a second MAJOR surgery (and her 4th total surgery in 16 months). Her heart surgery was a nightmare and we are terrified for her. Please pray that everything goes according to plan! We would love to be home in time for Easter. Even if we can't be at church or with family, we would like to spend it at home with the twins!
3. Pray that we will be able to get a room at the Ronald McDonald House. I will be staying in the hospital room with Lexi, but Jon and my other family members that will be rotating help will need a place to stay. Otherwise, the cheapest hotel at Cleveland Clinic is at least $125 per night. Along with our meal expenses (the cafeteria is good but VERY expensive), this could become a very pricey 10 days. Unfortunately, the RMH at the Clinic goes on a first-come basis. We will not know if we have a room until after 2pm on the 23rd.
4. Finally, pray for the twins, Aleah and Elizabeth, as they will once again be gone from Mommy (and Daddy for part of the time). Jon will stay the 24th- 27th but has to return to work. They will also be bounced around quite a bit during the day while Jon works. Aleah is a mommy's girl and I think this is one of the more difficult parts of Lexi having another surgery- leaving my other 2 little ones again!
Friday, February 19, 2010
Friday, February 19th- 2 days in Cleveland
Note: this is a very lengthy post! I know some really like details while others just want the "big picture!" So, I've put a summary at the bottom!! We really appreciate your continued prayers and the many of you that often ask "how's Lexi doing?"
We made a trip to Cleveland yesterday and today. Lexi woke up Tuesday morning very ill. She has been running a temp and is unable to keep down any of her regular feeds (she can only keep down pedia-lyte). However, since this is the 3rd episode like this in in 3 weeks, we were concerned that it was not simply "a flu bug." 3 weeks ago when these "episodes" started, Lexi was taken to the ER and the pediatrician ran every test imaginable- blood tests, chest X-rays, urinalysis, etc and NOTHING was abnormal. We called the GI dept at Cleveland Clinic Tuesday and the Drs are concerned that the vomiting could be related to Lexi's chiari malformation.
Yesterday, we went to Cleveland Clinic to see the opthomologist for her post-op check-up. Lexi's eyes are healing well. She has a small cyst developing on her left eye because the stitches are irritation her cornea. If it does not go away by Monday, they will treat it with additional medication. We then saw a speech pathologist in hopes to get Lexi at least babbling as she only makes "vowel" sounds. However, the speech pathologist thinks that Lexi will take a very long time to be able to really communicate due to her facial nerve damage. We are going to start really focusing on comprehension with her at this point. Finally, we were able to see a GI doctor as well yesterday. They are doing a full lab work-up on Lexi to rule out any infections and/or metabolic issues. Next Wednesday, they will also do an upper GI study on her to make sure everything is emptying the right way (if things aren't going down and out the right way- they usually come back up!). Finally, the Dr put Lexi on a new medication due to concern that she has an "syndrome" called CVS- cyclic vomiting syndrome in which, usually due to migraines, you throw up continuously for a few days, get completely better for a time and then repeat!
We spoke with the neurosurgeon earlier this week and they have scheduled her brain surgery for March 24th :-( Due to her most recent symptoms, Lexi's neurologist requested to see her today. He spent over an hour with us and was able to show us her MRI results. The most difficult thing with Lexi is- are her symptoms related to her chiari or to her cranial nerve damage? The neurologist is really uncertain of what to do with Lexi. After an hour of discussion, we have decided to keep her surgery date for March 24th and keep a really close eye on her current symptoms. If they go away soon, and/or if GI can find a problem that can explain the vomiting, we may be able to put off surgery a little while longer and wait for Lexi to get a little bigger. However, if the vomiting does not go away, we will need to do surgery to eliminate pressure in the brain from her herniated brain stem.
SUMMARY:
Lexi's MRI results show some moderate crowding in her cerebellum, but the fluid flow around the brain is "acceptable." However, due to Lexi having a a significant chiari malformation, the neurosurgeon feels Lexi should have brain surgery, set for March 24th. Lexi has been very ill off and on the past 3 weeks and her doctors are concerned that her chiari is getting worse. The GI doctors are trying to rule out a GI issue first and we have more tests for this next week. However, if nothing GI related can be found and the vomiting, sleepless nights and fussiness continue, we will need to go through with brain surgery on the 24th.
Specific Prayer Requests:
Please pray for Lexi right now as she is very fussy (and pray for Jon and I as we deal with a sick baby!). Pray for comfort for her.
Pray that these vomiting episodes can be diagnosed. We are REALLY praying that they are NOT related to her chiari and we can avoid brain surgery for a little while longer. However, more importantly, we want Lexi to feel better and make more improvements- so whatever needs done, we will do it!
Finally, pray for wisdom for her team of Doctors and for Jon and I. Lexi is not a clear-cut situation due to her many medical "issues." Pray that we can sort through all of them and the God will give us peace and comfort as we deal with this VERY important decision.
We will know much more after her upper GI next week and once we see if these vomiting episodes continue. We travel to Cleveland Clinic next Wednesday and again Thursday so also pray for safe traveling!
We made a trip to Cleveland yesterday and today. Lexi woke up Tuesday morning very ill. She has been running a temp and is unable to keep down any of her regular feeds (she can only keep down pedia-lyte). However, since this is the 3rd episode like this in in 3 weeks, we were concerned that it was not simply "a flu bug." 3 weeks ago when these "episodes" started, Lexi was taken to the ER and the pediatrician ran every test imaginable- blood tests, chest X-rays, urinalysis, etc and NOTHING was abnormal. We called the GI dept at Cleveland Clinic Tuesday and the Drs are concerned that the vomiting could be related to Lexi's chiari malformation.
Yesterday, we went to Cleveland Clinic to see the opthomologist for her post-op check-up. Lexi's eyes are healing well. She has a small cyst developing on her left eye because the stitches are irritation her cornea. If it does not go away by Monday, they will treat it with additional medication. We then saw a speech pathologist in hopes to get Lexi at least babbling as she only makes "vowel" sounds. However, the speech pathologist thinks that Lexi will take a very long time to be able to really communicate due to her facial nerve damage. We are going to start really focusing on comprehension with her at this point. Finally, we were able to see a GI doctor as well yesterday. They are doing a full lab work-up on Lexi to rule out any infections and/or metabolic issues. Next Wednesday, they will also do an upper GI study on her to make sure everything is emptying the right way (if things aren't going down and out the right way- they usually come back up!). Finally, the Dr put Lexi on a new medication due to concern that she has an "syndrome" called CVS- cyclic vomiting syndrome in which, usually due to migraines, you throw up continuously for a few days, get completely better for a time and then repeat!
We spoke with the neurosurgeon earlier this week and they have scheduled her brain surgery for March 24th :-( Due to her most recent symptoms, Lexi's neurologist requested to see her today. He spent over an hour with us and was able to show us her MRI results. The most difficult thing with Lexi is- are her symptoms related to her chiari or to her cranial nerve damage? The neurologist is really uncertain of what to do with Lexi. After an hour of discussion, we have decided to keep her surgery date for March 24th and keep a really close eye on her current symptoms. If they go away soon, and/or if GI can find a problem that can explain the vomiting, we may be able to put off surgery a little while longer and wait for Lexi to get a little bigger. However, if the vomiting does not go away, we will need to do surgery to eliminate pressure in the brain from her herniated brain stem.
SUMMARY:
Lexi's MRI results show some moderate crowding in her cerebellum, but the fluid flow around the brain is "acceptable." However, due to Lexi having a a significant chiari malformation, the neurosurgeon feels Lexi should have brain surgery, set for March 24th. Lexi has been very ill off and on the past 3 weeks and her doctors are concerned that her chiari is getting worse. The GI doctors are trying to rule out a GI issue first and we have more tests for this next week. However, if nothing GI related can be found and the vomiting, sleepless nights and fussiness continue, we will need to go through with brain surgery on the 24th.
Specific Prayer Requests:
Please pray for Lexi right now as she is very fussy (and pray for Jon and I as we deal with a sick baby!). Pray for comfort for her.
Pray that these vomiting episodes can be diagnosed. We are REALLY praying that they are NOT related to her chiari and we can avoid brain surgery for a little while longer. However, more importantly, we want Lexi to feel better and make more improvements- so whatever needs done, we will do it!
Finally, pray for wisdom for her team of Doctors and for Jon and I. Lexi is not a clear-cut situation due to her many medical "issues." Pray that we can sort through all of them and the God will give us peace and comfort as we deal with this VERY important decision.
We will know much more after her upper GI next week and once we see if these vomiting episodes continue. We travel to Cleveland Clinic next Wednesday and again Thursday so also pray for safe traveling!
Saturday, February 13, 2010
Post eye-surgery, Feb 13th
We are home with Lexi! She did really well yesterday. We are constantly amazed at her strength and tolerance of all the poking and prodding she goes through! She's our little trooper! Lexi is very swollen and has bloody eyes, but surgery went well and there is a 70% success rate! The best news yesterday was that the MRI dept was running behind 2 hours- we were frustrated at 1st, but the opthomologist was literally sitting around waiting for Lexi to show up for her eye surgery. So, she was only sedated for about 6 hours instead of 8 or 9! (Blessings in disguise-we love it!) We will talk with the neurosurgeon about her MRI results later this coming week. We will know more about the success of her eye surgery in 3-4 weeks as her brain now has to "reset" to her new eye position. Please keep us in your prayers this week as Lexi is not to be out much because of her high risk for eye infections. Also, Lexi is supposed to do "resting activities" for a week- should be interesting with 3 littles ones! Thank you all foor your prayers. I can't begin to tell you how hard it is to hand your little baby over to a team of doctors and watch them "go to work" on her- it's perhaps the most difficult thing we've had to do! Your prayers give us the inner strength we need!
Tuesday, February 9, 2010
Tuesday, February 9th- Eye surgery!!
We received a call on Monday that Cleveland Clinic has moved Lexi's brain MRI and eye surgery up to Friday due to some scheduling issues. Due to the weather today and tomorrow, we will be cramming all of her pre-op appts in on Thursday afternoon in Cleveland. Jon and I will stay overnight with Lexi Thursday in Cleveland.
Lexi goes in for her sedation at 9am Friday morning. They will then do a 3 hour brain MRI and flow study to assess her chiara malformation- this was at the request of the neurosurgeon. They will then keep her under anesthesia and transfer her 2 blocks to the surgery center where she will be the 1st surgery in the afternoon. The opthomologist will go into both eyes, cut the eye muscles, pull them tighter and then put very tiny stitches in the muscles. This should be at least a temporary fix to her "cross-eyes" due to her cranial nerve damage! Lexi will be under anesthesia for 8-9 hours throughout this process. Lexi has been experiencing extreme bouts of reflux this past week and this is an added issue with her being on a ventilator and under anesthesia for this length of time.
Specific Prayer Requests:
Please pray for Lexi as this is a very long time, especially a small heart patient, to be under.
Pray for her anesthesiolgist that will be with her during the entire process and for the doctors doing both the MRI and the eye surgery. We are hopeful that she will be able to come on Saturday!
Pray that the results of her MRI scan show a miraculous difference in her chiari malformation and that Lexi will NOT need brain surgery this spring!
Finally, please keep my sister, Holly, in your prayers as she will have the twins during this time as well as her two little boys!
We will give an update this weekend!
Lexi goes in for her sedation at 9am Friday morning. They will then do a 3 hour brain MRI and flow study to assess her chiara malformation- this was at the request of the neurosurgeon. They will then keep her under anesthesia and transfer her 2 blocks to the surgery center where she will be the 1st surgery in the afternoon. The opthomologist will go into both eyes, cut the eye muscles, pull them tighter and then put very tiny stitches in the muscles. This should be at least a temporary fix to her "cross-eyes" due to her cranial nerve damage! Lexi will be under anesthesia for 8-9 hours throughout this process. Lexi has been experiencing extreme bouts of reflux this past week and this is an added issue with her being on a ventilator and under anesthesia for this length of time.
Specific Prayer Requests:
Please pray for Lexi as this is a very long time, especially a small heart patient, to be under.
Pray for her anesthesiolgist that will be with her during the entire process and for the doctors doing both the MRI and the eye surgery. We are hopeful that she will be able to come on Saturday!
Pray that the results of her MRI scan show a miraculous difference in her chiari malformation and that Lexi will NOT need brain surgery this spring!
Finally, please keep my sister, Holly, in your prayers as she will have the twins during this time as well as her two little boys!
We will give an update this weekend!
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