It appears as though we are now at a brief waiting point with Lexi. The neurologist spoke with the neurosurgeon last Thursday and they would like to do yet another MRI. This one will be on Lexi's lower brain and spinal cord. They want to make sure there is no build-up of spinal fluid and/or they want to rule out the possibility of a tethered spinal cord. So, Lexi has an MRI scheduled for Friday, September 25th. She will have to go through the exact same steps she did 2 weeks ago with full sedation, IVs and a vent. If there is no spinal fluid build-up and her spinal cord is not tethered, they are hoping to put off surgery for the time being (hopefully until at least November or December).
We also made a trip to Cleveland last week to see Opthomology. The Opthomologist feels that Lexi's eyes turning in is directly related to her brain stem hemorrhage (chiari malformation). He would like to wait until after she has surgery before exploring eye surgery. However, the neurosurgeon does not feel the eye is related and would like to put off brain surgery as long as absolutely possible. So, for now, we are starting to patch her eyes (2 days left eye and one day right eye) to keep her vision from getting any worse. The patching will not help her eyes turn back out but will buy us some time until her next MRI. We will see opthomology again on October 13th.
The most difficult part of this past week is that while this malformation is very upsetting news, we were almost "excited" that we FINALLY had some of the answers we were desperately looking for! The chiari explains a lot of what Lexi has been going through. However, the neurosurgeon does not feel Lexi's current symptoms- no suck/swallow reflex, aspirating on thin liquids, reduced blink, poor muscle control, etc- are not related to newest finding, the chiari malformation, even though these are all symptoms of the malformation. The chiari is a new finding (within the last 1-2 months) and her symptoms were all present before this (right after surgery). So, sweet little Lexi apparently has 2 separate neurological issues- cranial nerve damage, including bi-lateral facial nerve damage, and a chiari malformation. The neurologist is now scheduling into December and January but we hope to get worked in to an appt. after her next MRI.
Prayer Requests:
Please pray for Jon and I as we learn patience with this entire process. We are confused and need a lot of answers that the doctors aren't able to give at this point.
Pray for us as we still struggle to find time to work with Lexi on all her therapy. We are almost settled into the new house (yes- it has taken us this long) but have about 2 more weeks worth of work. Please pray that we are able to get things finished quickly so we can focus more on the help Lexi needs.
Pray for Lexi's neurological issues. We are praying that the doctors find no spinal fluid build-up and that we can post-pone surgery for the time being.
Finally, pray for Jon and I as we continue to seek care for Lexi. We are actually looking into some "alternative therapy" for Lexi. We feel as long as it doesn't hurt her, it is worth trying! Pray for wisdom and we explore several options!
We will post next week with some updates on Lexi's therapy progress!
Monday, September 14, 2009
Thursday, September 3, 2009
Thursday, September 3rd- Not the news we wanted!
We finally heard back from both Doctors today with Lexi's MRI results. We got some good news and some not-so-good news.
First, her MRI went very well! It took them over an hour to get an IV in her poor little veins. They had to poke her 21 times (but fortunately they had already put her to sleep with a gas mask). Her veins are just so tiny and have been poked so many times before. The MRI took about 3 1/2 hours. We were there for 7 hours total but were able to bring Lexi home by early evening! She was a trooper and all the doctors commented on how strong she is! (The cardiac anesthesiologist also took the liberty of doing her hair into a mohawk- she has CRAZY hair!)
The good news: The cardiologist called today and said there were no surprises on the MRI. Lexi still has 2 narrowings in her aorta but nothing they are extremely concerned about at this point. Also, her blood vessels don't appear to be overly narrow. This is very good news!
The bad news: The neurological nurse called and there was definitely a big surprise on her brain MRI. She said this MRI, as compared to the 5 done in November and December of '08 were drastically different. Lexi apparently has a chiari I malformation. Basically, her brain stem is herniated and the bottom of the stem is spilling into her spinal column. Typically, the herniated portion is between 3-5mm. Lexi's is 9mm. They are finding this to be very "unusual" (where have we heard that before?) because there were absolutely no indications of this on her last 5 tests! Why this would come up now is odd.
What's next: Next week after the holiday weekend, the neurologist will be meeting with pediatric neuro-surgeon to discuss the next step. They will probably do another MRI of her spine as one of the biggest issues is that with pressure on the spinal cord from the brain, some experience leaking of spinal fluid. This is, obviously very dangerous and they want to be sure this is not happening. Most likely, since Lexi's herniation is so large and she is displaying many symptoms, they will do brain surgery. This will require them to open her skull at the base of her neck, remove of few of the bone fragments (I don't' remember the medical term) and then mesh the brain stem up. This will give the herniated stem room to "grow." 80% of people who have this surgery recover fully. 20% experience no relief of symptoms. We are simply praying at this point that the doctors have wisdom on what to do. Obviously the thought of our little baby going in for yet another surgery frightens us. But, we will have to do what is best for Lexi.
Please pray:
Pray for little Lexi. If you google her chiari malformation, mostly adults have symptoms and they say it is very painful with extreme headaches, nausea, etc. Little Lexi is not able to express these to us. Pray for any pain she might be in. One of the symptoms is sleep apnea and Lexi has been sleeping very poorly at night and taking very short naps during the day.
Pray for the neurologist and neuro-surgeon who will be making decisions. Pray for wisdom and guidance and that they will be able to explain things very clearly to Jon and I.
Pray for our family. This newest development has been very difficult as we thought we were on the up-swing of Lexi's condition. Pray for peace and for us to find much-needed rest and time to spend with Lexi (and the twins).
Pray for our family and my parents as we head to Pennsylvania this weekend to visit my grandparents. It is a 7 hour trip but my grandparents are in poor health and have yet to meet little Lexi. Pray for safe travel and an up-lifting time with my extended family.
Thank you all for asking us about Lexi. It means a great deal to us (especially in times like this) to know that so many are praying for her healing! If you'd like to leave us comments, you can do so to our e-mail at thehocansons@yahoo.com or on Lexi's facebook "Group Prayers for Alexis Mae Hocanson.
First, her MRI went very well! It took them over an hour to get an IV in her poor little veins. They had to poke her 21 times (but fortunately they had already put her to sleep with a gas mask). Her veins are just so tiny and have been poked so many times before. The MRI took about 3 1/2 hours. We were there for 7 hours total but were able to bring Lexi home by early evening! She was a trooper and all the doctors commented on how strong she is! (The cardiac anesthesiologist also took the liberty of doing her hair into a mohawk- she has CRAZY hair!)
The good news: The cardiologist called today and said there were no surprises on the MRI. Lexi still has 2 narrowings in her aorta but nothing they are extremely concerned about at this point. Also, her blood vessels don't appear to be overly narrow. This is very good news!
The bad news: The neurological nurse called and there was definitely a big surprise on her brain MRI. She said this MRI, as compared to the 5 done in November and December of '08 were drastically different. Lexi apparently has a chiari I malformation. Basically, her brain stem is herniated and the bottom of the stem is spilling into her spinal column. Typically, the herniated portion is between 3-5mm. Lexi's is 9mm. They are finding this to be very "unusual" (where have we heard that before?) because there were absolutely no indications of this on her last 5 tests! Why this would come up now is odd.
What's next: Next week after the holiday weekend, the neurologist will be meeting with pediatric neuro-surgeon to discuss the next step. They will probably do another MRI of her spine as one of the biggest issues is that with pressure on the spinal cord from the brain, some experience leaking of spinal fluid. This is, obviously very dangerous and they want to be sure this is not happening. Most likely, since Lexi's herniation is so large and she is displaying many symptoms, they will do brain surgery. This will require them to open her skull at the base of her neck, remove of few of the bone fragments (I don't' remember the medical term) and then mesh the brain stem up. This will give the herniated stem room to "grow." 80% of people who have this surgery recover fully. 20% experience no relief of symptoms. We are simply praying at this point that the doctors have wisdom on what to do. Obviously the thought of our little baby going in for yet another surgery frightens us. But, we will have to do what is best for Lexi.
Please pray:
Pray for little Lexi. If you google her chiari malformation, mostly adults have symptoms and they say it is very painful with extreme headaches, nausea, etc. Little Lexi is not able to express these to us. Pray for any pain she might be in. One of the symptoms is sleep apnea and Lexi has been sleeping very poorly at night and taking very short naps during the day.
Pray for the neurologist and neuro-surgeon who will be making decisions. Pray for wisdom and guidance and that they will be able to explain things very clearly to Jon and I.
Pray for our family. This newest development has been very difficult as we thought we were on the up-swing of Lexi's condition. Pray for peace and for us to find much-needed rest and time to spend with Lexi (and the twins).
Pray for our family and my parents as we head to Pennsylvania this weekend to visit my grandparents. It is a 7 hour trip but my grandparents are in poor health and have yet to meet little Lexi. Pray for safe travel and an up-lifting time with my extended family.
Thank you all for asking us about Lexi. It means a great deal to us (especially in times like this) to know that so many are praying for her healing! If you'd like to leave us comments, you can do so to our e-mail at thehocansons@yahoo.com or on Lexi's facebook "Group Prayers for Alexis Mae Hocanson.
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