We had an extremely exhausting week last week! I feel like we are just now beginning to recover. My parents and I spent 2 days in Cleveland this past Tuesday and Wednesday. On Tuesday, we left the house at 6am for our first appointment at 9am. Here is a brief synopsis of all of Lexi's appointments and the MANY tests/surgeries that will be happening in the next few months:
Opthomology- Lexi's eyes are still significantly turned in. The Opthomologist is insistent that this is related to her chiari malformation. He is highly recommending we see nuero-surgery personally. However, since no brain operation is planned in the near future, Dr. Rychwalski, the opthomologist, will be doing corrective eye surgery for Lexi on Monday, November 23rd. We have a few pre-op appointments prior to surgery as Lexi has to get "clearance" from several departments before surgery. She will hopefully only be in the hospital for one day and then "uncomfortable" at home for 2-3 weeks with swollen/bloody eyes.
Cardiology- this was actually our easiest appointment. Lexi had an EKG and echocardiogram and did great for both of these! We also saw the cardiologist who said her 2 narrowings are still "moderate" and there are no surgeries needed in the near future. We will see cardiology again in 3 months. The most ironic thing, however, is that the thing that started this- Lexi's heart- is the least of our concerns now!
Dietician- Lexi if FINALLY gaining the right amount of weight. The dietician spent some time trying to recalculate her formula again to make sure she's gaining the right grams per day. They have significantly increased her caloric intake and Lexi has finally reached 17lbs! The dietician is also having Lexi see an allergist as they are concerned she might have some food allergies and a milk allergy.
Swallow Study- on Wednesday morning, Lexi had a swallow study. She, as our luck has it, woke up vomiting on Wednesday morning. So, her swallow study didn't go exceptionally well. She accomplished 7 swallows of thin liquids and, although she did not aspirate, they felt this was too limited of a study to give any further recommendations. From what the speech pathologist did see, she did not feel there was any improvement in Lexi's swallowing from 6 months ago.
Feeding Clinic- we then had a 3 hour session at the feeding clinic. We were extremely impressed with the thoroughness and level of professionalism! We met with a developmental pediatrician who said Lexi is a very "floppy" baby (but super cute!!). We then met with a clinical psychologist that runs the clinic, another dietician and an Occupational Therapist that specializes in feeding. They "interviewed" me for about an hour and then watched a feeding session with Lexi behind a 2-way mirror. After the feeding session, we met back again. The results- they feel that Lexi has "no clue" when it comes to eating. Her cranial nerve damage has had significant impact on her eating skills. And, the longer she goes without being able to eat orally, the more severe this will become. Lexi is also starting to develop some behavior aversions to eating. This is also a huge concern with the clinic. The clinic has never seen a child with Lexi's "condition" so this will be a trial and error treatment. They would like to see Lexi every one to two weeks!!! While this is a HUGE task for our family to take on, we really feel like it is what is best for Lexi. The Cleveland Clinic feeding clinic is one of very few clinics that specialize in feeding. So, we will do what Lexi needs to get better!
GI- after our lengthy feeding clinic, we finished up with GI. This was another intense appointment. The feeding clinic feels that Lexi has some additional GI issues, especially her reflux. So, they sent a staff memo to Dr. Mohr, the GI doctor, asking that she get very serious and aggressive with Lexi's GI issues. Unfortunately, they have done everything they can with medicine to treat Lexi's reflux, so the only other options would be surgery. However, they want to be sure they have "figured out" Lexi's issues before proceeding with any type of surgery. So, they are doing the following:
Lexi will be seeing another neurologist and we will be doing a sleep study. During the study, they will put a small probe down her stomach to watch her reflux and see how her stomach empties during sleep. We will be at the clinic for 24 hours for this.
Lexi will be having an "emptying" procedure done on November 17th where they will fill her stomach and then watch how it empties for 1 hour. This will help them know that everything is heading the right direction and not coming back up her esophagus.
Finally, Lexi will be seeing the Airway Clinic. This clinic consists of a polmonologist, ENT and GI doctor. They will be sure that Lexi's airway is safe and there are no other underlying issues.
Whew! I told you it was a crazy 2 days! I know it may be more information that you want. However, many had asked how her appointments went and this is the most concise I can get!:-)
Prayer Requests:
Perhaps the most difficult outcome of these appointments is realizing that Lexi's condition is not going to get better any time soon (but we are STILL praying for that Miracle!). We know God CAN heal but it will be in His timing (which is the often the hardest part!). When we came home from the hospital, we were thinking it may be a year or so. Now that we are approaching a year, we are adding even more doctors, surgeries, etc. We are exhausted. Please pray for strength and extreme success in time management. I do 4 "side jobs" to help bring in extra money- I teach piano lessons, sell Tastefully Simple 2-4 nights a week, work at my dad's office 1 1/2 days a week, and direct Children of the Light on Sundays. This is becoming very difficult to manage. But, it keeps me home 3-4 days a week to take Lexi to all her appointments and spend time with the twins.
Pray for Lexi's upcoming appointments and eye surgery. Pray for wisdom for the doctors and "continuity of care" between the many departments that are working with Lexi at the Cleveland Clinic.
Monday, October 19, 2009
Thursday, October 1, 2009
October 1- Results
We made two trips to Cleveland in 5 days. My mom and I took Lexi on Friday for another MRI. This was of her spinal column. Lexi did well (although they once again had a really difficult time with her IV). But, she was only poked 14 times so they are improving! The neurology nurse called on Monday and said that the results came back normal! Praise the Lord! This means Lexi does not have a tethered spinal cord and there is not spinal fluid build-up. She then set-up an appointment for us to see the neurologist, Dr. Friedman, on Tuesday.
On Tuesday, Jon took the afternoon off work and we headed over to be sure that we both received answers to a lot of questions. Dr Friedman is a fantastic doctor and is very thorough. He spend an hour with us talking to us and examining Lexi. It appears the Lexi, once again, is a bit of an "anomaly." Neurologists have always assumed that you are born with a chiari malformation (this herniation of the brain stem). But, Lexi was not. Her MRI results only 5-6 months apart and very different. This has "stumped" even the neurosurgery team. Because of this malformation suddenly occurring, they would like to wait and see what happens with it. This is good news for our family as it means they will not be doing brain surgery immediately. Lexi does has some fluid build-up on one side of her cerebellum that they will keep a close eye on. We will see the neurologist again in 3 months and if her symptoms have not changed, we will wait and do another MRI in 6 months. At that time (either in 3 or 6 months) we will see what the neuro surgeon thinks about surgery.
Perhaps the most difficult and frustrating thing for Jon and I is this- all of Lexi's symptoms are symptoms of a Chiari malformation, which means they would typically do surgery immediately. But, since these symptoms occurred immediately after heart surgery and the chiari is new, none of them are related! Ahh! So, they are telling us to watch out for symptoms- what symptoms?? She has all of them!! Dr. Friedman said we should make sure her symptoms are getting better and not worse. So, we have to keep a very close eye on Lexi and write down any unusual things she might do. This is very stressful for a parent!
We again asked Dr. Friedman what might have caused all of these symptoms- reduced blink, swallowing difficulties, facial nerve damage. He honestly has no idea but can definitely narrow down that something happened between the time she went into surgery and the time she woke up 6 days later. Unfortunately, no one knows exactly what happened. As you can imagine, this is so hard to us as parents to not have any answers as to what happened to our sweet little Lexi!
Finally. Dr. Friedman is concerned about Lexi's very slow development. She is significantly behind. She is 11 months old and is about the development of a 4 to 5 month old. However, the reassuring part is that he thinks she will eventually get there. Lexi has a lot of strikes against her. But, she is a fighter and Jon and I are fighters. We are DETERMINED to get her better. We are praying that we will see huge leaps in her development as, hopefully, her nerves continue to heal.
Prayer Requests:
Pray for Lexi's Chiari malformation and that her symptoms do not get worse. With her heart defects, brain surgery would be a bit more dangerous for her. Pray that we do not have to have brain surgery ever!
Pray for Lexi's eyes. Since nuero surgery is not going to operate in the next 3 months, it's back to Opthomology for (most likely) surgery. Pray for wisdom for the doctors.
Pray for my parents, Lexi and I as we travel to Cleveland October 13th and 14th for 2 full days of appointments. I believe we have 9 appointments (including 2 heart tests and a 3 hour feeding clinic appointment).
Finally, pray for Jon and I as we re-work our budget. Each trip to Cleveland (When we don't spend the night) cost us about $75-$100 with meals, gas, parking, tolls, etc. Going from a 2 income to 1 income family has finally caught up to us and we are coming up short every month. Pray that we can find and make the necessary cuts for me to be able to stay home with Lexi! This is probably our biggest burden at the moment!
On Tuesday, Jon took the afternoon off work and we headed over to be sure that we both received answers to a lot of questions. Dr Friedman is a fantastic doctor and is very thorough. He spend an hour with us talking to us and examining Lexi. It appears the Lexi, once again, is a bit of an "anomaly." Neurologists have always assumed that you are born with a chiari malformation (this herniation of the brain stem). But, Lexi was not. Her MRI results only 5-6 months apart and very different. This has "stumped" even the neurosurgery team. Because of this malformation suddenly occurring, they would like to wait and see what happens with it. This is good news for our family as it means they will not be doing brain surgery immediately. Lexi does has some fluid build-up on one side of her cerebellum that they will keep a close eye on. We will see the neurologist again in 3 months and if her symptoms have not changed, we will wait and do another MRI in 6 months. At that time (either in 3 or 6 months) we will see what the neuro surgeon thinks about surgery.
Perhaps the most difficult and frustrating thing for Jon and I is this- all of Lexi's symptoms are symptoms of a Chiari malformation, which means they would typically do surgery immediately. But, since these symptoms occurred immediately after heart surgery and the chiari is new, none of them are related! Ahh! So, they are telling us to watch out for symptoms- what symptoms?? She has all of them!! Dr. Friedman said we should make sure her symptoms are getting better and not worse. So, we have to keep a very close eye on Lexi and write down any unusual things she might do. This is very stressful for a parent!
We again asked Dr. Friedman what might have caused all of these symptoms- reduced blink, swallowing difficulties, facial nerve damage. He honestly has no idea but can definitely narrow down that something happened between the time she went into surgery and the time she woke up 6 days later. Unfortunately, no one knows exactly what happened. As you can imagine, this is so hard to us as parents to not have any answers as to what happened to our sweet little Lexi!
Finally. Dr. Friedman is concerned about Lexi's very slow development. She is significantly behind. She is 11 months old and is about the development of a 4 to 5 month old. However, the reassuring part is that he thinks she will eventually get there. Lexi has a lot of strikes against her. But, she is a fighter and Jon and I are fighters. We are DETERMINED to get her better. We are praying that we will see huge leaps in her development as, hopefully, her nerves continue to heal.
Prayer Requests:
Pray for Lexi's Chiari malformation and that her symptoms do not get worse. With her heart defects, brain surgery would be a bit more dangerous for her. Pray that we do not have to have brain surgery ever!
Pray for Lexi's eyes. Since nuero surgery is not going to operate in the next 3 months, it's back to Opthomology for (most likely) surgery. Pray for wisdom for the doctors.
Pray for my parents, Lexi and I as we travel to Cleveland October 13th and 14th for 2 full days of appointments. I believe we have 9 appointments (including 2 heart tests and a 3 hour feeding clinic appointment).
Finally, pray for Jon and I as we re-work our budget. Each trip to Cleveland (When we don't spend the night) cost us about $75-$100 with meals, gas, parking, tolls, etc. Going from a 2 income to 1 income family has finally caught up to us and we are coming up short every month. Pray that we can find and make the necessary cuts for me to be able to stay home with Lexi! This is probably our biggest burden at the moment!
Subscribe to:
Posts (Atom)
