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!
Wednesday, March 17, 2010
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!
Tuesday, January 12, 2010
January 12- New Year, new updates
Happy New Year! We hope everyone had a blessed holiday season! We were so thankful to be home with our family this year enjoying a much healthier and happier New Year. Despite her many set-backs and delays this past year, we are so thankful for the progress Lexi has made. She is a real trooper! We also appreciate everyone's continued prayers and concerns for her. One of my good friends put it very well. Lexi's condition is going to be a very long marathon, not a sprint as we originally thought. Pray that we have the endurance she needs!
We went to Cleveland Clinic last Monday and yesterday. The roads yesterday were the worst I have ever experienced and it took my sister Holly and I 4 1/2 hours to get home last evening! But, we were thankful to make it home safely with the terrible road conditions.
Last week, we saw Neurology. Dr. Friedman is very pleased with Lexi's progress. He is confident that her cranial nerve damage is getting better, but does not know if she will fully recover from the damage she suffered. He said the most difficult thing to hear from impatient people- "give it more time!" We were happy to see that he was pleased with the progress she has made, however, since he is the 1st doctor to see her at Cleveland Clinic exactly 1 year ago!
This week, Lexi saw 4 doctors. ENT (ear, nose & throat) did a swallow study with a scope in the office. The good news is Lexi is not aspirating! The bad news is that because of her cranial nerve damage, she can't control liquids and has no chewing motion. They are having us thicken her food even more and continue therapy. The head of pediatric speech pathology helped with the swallow study and afterwards talked with me about Lexi's unique situation. She has agreed to see Lexi every two weeks when we see the feeding clinic. It's our hope that we can get Lexi communicating, most likely by sign language, in the next few months!
We then saw GI and, since Lexi has been extra fussy that past few weeks and throwing up, they have moved her to yet another formula. This formula costs $150 for 4 cans!! Yikes! I am working today on getting it approved through insurance- please pray that they will approve this highly specialized formula! Lexi has lost over 1 pound this past week as well. She is back down to 17lbs 12 oz. This is very discouraging to us! We are praying this new formula puts her back on the weight-gaining track. (Why is it that she LOSES and I GAIN??- I think we need to get his figured out!) :-)
After GI, we were finally able to see the neurosurgeon. Dr. Luciano spent some time with us and walked us through her MRI scans. There are 2 areas of concern on her MRI. He feels that most of Lexi's symptoms are related to her cranial nerve damage during her heart surgery, most likely from loss of blood flow during surgery. However, he does think that a few of her symptoms are related to her chiari malformation as well. So, he is planning yet another MRI for Lexi along with a flow study of her brain. After this, he will meet with us again to discuss the results and the likelihood of brain surgery. They are hoping to do her MRI while she is already sedated during her eye surgery, which is now scheduled for February 15th.
Finally, we had a 2 hour appointment with the sleep disorders clinic. The neuro-sleep doctor is pretty sure that Lexi has sleep apnea. We are very glad that the GI and ENT doctors insisted we have this checked as sleep apnea can put extra stress on your heart! So, we will be doing a 12 hour sleep study at the clinic on February 9th and 10th.
Lexi is getting stronger (and more ornery) and is finally starting to sit-up on her own! Please pray for her continued therapy as well. Jon and I still struggle to find the necessary time to work with her on speech, OT and PT.
Specific Prayer Requests:
Please pray for continued healing for Lexi. We are praying specifically that she recovers fully from her cranial nerve damage and that the healing is quicker than the doctors would ever expect! We are also praying that the 2 areas of concern to the neurosurgeon would come back clear so Lexi does not need surgery!
Pray for our trips to Cleveland as the roads are very slippery during the winter- especially in Cleveland!
Finally, pray for our family as we continue to try to manage all of Lexi's care and deal with twins in their terrible two's! Pray for strength, wisdom and patience.
We will update again in a few weeks when we find out more information on Lexi's eye surgery and her MRI.
We went to Cleveland Clinic last Monday and yesterday. The roads yesterday were the worst I have ever experienced and it took my sister Holly and I 4 1/2 hours to get home last evening! But, we were thankful to make it home safely with the terrible road conditions.
Last week, we saw Neurology. Dr. Friedman is very pleased with Lexi's progress. He is confident that her cranial nerve damage is getting better, but does not know if she will fully recover from the damage she suffered. He said the most difficult thing to hear from impatient people- "give it more time!" We were happy to see that he was pleased with the progress she has made, however, since he is the 1st doctor to see her at Cleveland Clinic exactly 1 year ago!
This week, Lexi saw 4 doctors. ENT (ear, nose & throat) did a swallow study with a scope in the office. The good news is Lexi is not aspirating! The bad news is that because of her cranial nerve damage, she can't control liquids and has no chewing motion. They are having us thicken her food even more and continue therapy. The head of pediatric speech pathology helped with the swallow study and afterwards talked with me about Lexi's unique situation. She has agreed to see Lexi every two weeks when we see the feeding clinic. It's our hope that we can get Lexi communicating, most likely by sign language, in the next few months!
We then saw GI and, since Lexi has been extra fussy that past few weeks and throwing up, they have moved her to yet another formula. This formula costs $150 for 4 cans!! Yikes! I am working today on getting it approved through insurance- please pray that they will approve this highly specialized formula! Lexi has lost over 1 pound this past week as well. She is back down to 17lbs 12 oz. This is very discouraging to us! We are praying this new formula puts her back on the weight-gaining track. (Why is it that she LOSES and I GAIN??- I think we need to get his figured out!) :-)
After GI, we were finally able to see the neurosurgeon. Dr. Luciano spent some time with us and walked us through her MRI scans. There are 2 areas of concern on her MRI. He feels that most of Lexi's symptoms are related to her cranial nerve damage during her heart surgery, most likely from loss of blood flow during surgery. However, he does think that a few of her symptoms are related to her chiari malformation as well. So, he is planning yet another MRI for Lexi along with a flow study of her brain. After this, he will meet with us again to discuss the results and the likelihood of brain surgery. They are hoping to do her MRI while she is already sedated during her eye surgery, which is now scheduled for February 15th.
Finally, we had a 2 hour appointment with the sleep disorders clinic. The neuro-sleep doctor is pretty sure that Lexi has sleep apnea. We are very glad that the GI and ENT doctors insisted we have this checked as sleep apnea can put extra stress on your heart! So, we will be doing a 12 hour sleep study at the clinic on February 9th and 10th.
Lexi is getting stronger (and more ornery) and is finally starting to sit-up on her own! Please pray for her continued therapy as well. Jon and I still struggle to find the necessary time to work with her on speech, OT and PT.
Specific Prayer Requests:
Please pray for continued healing for Lexi. We are praying specifically that she recovers fully from her cranial nerve damage and that the healing is quicker than the doctors would ever expect! We are also praying that the 2 areas of concern to the neurosurgeon would come back clear so Lexi does not need surgery!
Pray for our trips to Cleveland as the roads are very slippery during the winter- especially in Cleveland!
Finally, pray for our family as we continue to try to manage all of Lexi's care and deal with twins in their terrible two's! Pray for strength, wisdom and patience.
We will update again in a few weeks when we find out more information on Lexi's eye surgery and her MRI.
Thursday, December 3, 2009
December 3- Changes and Frustration!
(I hope this makes sense as it is very late and I am very tired!!)
We hope everyone had a great Thanksgiving! Our was very low-key and we were very happy about it! We were so thankful to have our entire family home together as we spent last Thanksgiving in the hospital with Lexi. We were able to put up a Christmas tree this year and even bake some cookies with the twins. We tried to stop and thank God for the many blessings- big and small that we have experienced this year. In spite of the obstacles we have also faced, WE ARE THANKFUL for a beautiful baby girl that has made it through a difficult year!
Many of you that follow the blog are probably wondering how eye surgery went. It didn't happen! We went to the Clinic for pre-op, got clearance from cardiology, basically all the "red tape" stuff. 4 days before surgery, the opthomologist office called and said they are postponing her eye surgery until she can see the neuro-surgeon. The opthomologist strongly feels the Lexi needs brain surgery and that her chairi malformation is what is causing her eyes to turn in. The earliest we can get in to nuero is January 11th becaused the Dr is gone for 3 weeks in December. So, we wait.
We saw our local hospital pediatrician this week, however, and he really feels Lexi's eyes need fixed now as they have become more cross-eyed and he is concerned her vision will be affected. He is recommending we take her to the opthomology department at Cincinnati Children's Hospital. If we wait for Cleveland Clinic, it will most likely be March before we can get her back in. We are PRAYING that the neuro-surgeon decides against brain surgery and would much prefer Lexi to just have a much more simple eye procedure done instead. We are confused and frustrating and in need of some guidance!
We made the 1st of our weekly December trips today. We saw an allergist and we're glad we did! We found out the Lexi is allergic to milk and eggs (poor baby- what else can she have??). So, they will be moving her to a soy-based diet immediately. We then had lab work done for endocrinology (to check her thyroid issues) and more tests for allergy. They are looking into how severe her allergies are and are also checking her liver. Lexi scratches herself to the point of drawing blood and they are trying to get to the bottom of this. We have also been asked to bathe her with special lotions and put a more potent lotion on her daily. We have deemed Lexi our "diva" as this lotion cost $6 an ounce! The cheap Johnson and Johnson just isn't good enough for the little princess (but she's worth it!).
Finally, we had another session with the eating clinic. They did an oral-motor- evaluation on her today. Lexi has very low tone in her face. Her bottom lip is too loose and her top lip is too tight. This both are issues in feeding. I asked them to be up-front with me about our game plan and Lexi's prognosis. The difficult thing is that no one knows if Lexi will fully recover from her facial nerve damage. At this point, they said it will be "a very long time" before she is able to eat completely on her own without the G-tube. The best thing we can do is oral stretches and try to get her to become consistent and not develop food aversions. The good news, however, is that she gained the appropriate amount of weight for the first time ever!! Yeah!! She is a whopping 17lbs 10 oz!
Prayer Requests:
Please pray for wisdom for Jon and I as we decide what to do about Lexi's eye surgery. Do we get a 2nd opinion and add another hospital and another doctor to the mix?? Pray that the 3 doctors- neurology (very against brain surgery), opthomology (strongly pushing for brain surgery) and neuro-surgery (yet to really weigh in) can all agree on the best treatment for Lexi.
Pray for me, Lexi, and my various family members as we make weekly trips to Cleveland. We go 6 times from now until January 11th. Pray for safe travel as the snow begins in Cleveland! Next week, we will see the feeding clinic, ENT (ear,nose and throat) and a neuro-sleep doctor to begin the process for her 24 hour PH probe and sleep study.
Thank you all for your continued prayers. It is a long and exhausting road with Lexi but her sweet little smiles and adorable personality make it all worth it!
We hope everyone had a great Thanksgiving! Our was very low-key and we were very happy about it! We were so thankful to have our entire family home together as we spent last Thanksgiving in the hospital with Lexi. We were able to put up a Christmas tree this year and even bake some cookies with the twins. We tried to stop and thank God for the many blessings- big and small that we have experienced this year. In spite of the obstacles we have also faced, WE ARE THANKFUL for a beautiful baby girl that has made it through a difficult year!
Many of you that follow the blog are probably wondering how eye surgery went. It didn't happen! We went to the Clinic for pre-op, got clearance from cardiology, basically all the "red tape" stuff. 4 days before surgery, the opthomologist office called and said they are postponing her eye surgery until she can see the neuro-surgeon. The opthomologist strongly feels the Lexi needs brain surgery and that her chairi malformation is what is causing her eyes to turn in. The earliest we can get in to nuero is January 11th becaused the Dr is gone for 3 weeks in December. So, we wait.
We saw our local hospital pediatrician this week, however, and he really feels Lexi's eyes need fixed now as they have become more cross-eyed and he is concerned her vision will be affected. He is recommending we take her to the opthomology department at Cincinnati Children's Hospital. If we wait for Cleveland Clinic, it will most likely be March before we can get her back in. We are PRAYING that the neuro-surgeon decides against brain surgery and would much prefer Lexi to just have a much more simple eye procedure done instead. We are confused and frustrating and in need of some guidance!
We made the 1st of our weekly December trips today. We saw an allergist and we're glad we did! We found out the Lexi is allergic to milk and eggs (poor baby- what else can she have??). So, they will be moving her to a soy-based diet immediately. We then had lab work done for endocrinology (to check her thyroid issues) and more tests for allergy. They are looking into how severe her allergies are and are also checking her liver. Lexi scratches herself to the point of drawing blood and they are trying to get to the bottom of this. We have also been asked to bathe her with special lotions and put a more potent lotion on her daily. We have deemed Lexi our "diva" as this lotion cost $6 an ounce! The cheap Johnson and Johnson just isn't good enough for the little princess (but she's worth it!).
Finally, we had another session with the eating clinic. They did an oral-motor- evaluation on her today. Lexi has very low tone in her face. Her bottom lip is too loose and her top lip is too tight. This both are issues in feeding. I asked them to be up-front with me about our game plan and Lexi's prognosis. The difficult thing is that no one knows if Lexi will fully recover from her facial nerve damage. At this point, they said it will be "a very long time" before she is able to eat completely on her own without the G-tube. The best thing we can do is oral stretches and try to get her to become consistent and not develop food aversions. The good news, however, is that she gained the appropriate amount of weight for the first time ever!! Yeah!! She is a whopping 17lbs 10 oz!
Prayer Requests:
Please pray for wisdom for Jon and I as we decide what to do about Lexi's eye surgery. Do we get a 2nd opinion and add another hospital and another doctor to the mix?? Pray that the 3 doctors- neurology (very against brain surgery), opthomology (strongly pushing for brain surgery) and neuro-surgery (yet to really weigh in) can all agree on the best treatment for Lexi.
Pray for me, Lexi, and my various family members as we make weekly trips to Cleveland. We go 6 times from now until January 11th. Pray for safe travel as the snow begins in Cleveland! Next week, we will see the feeding clinic, ENT (ear,nose and throat) and a neuro-sleep doctor to begin the process for her 24 hour PH probe and sleep study.
Thank you all for your continued prayers. It is a long and exhausting road with Lexi but her sweet little smiles and adorable personality make it all worth it!
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