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.
Monday, August 17, 2009
Monday, August 17th- Trying to be flexible!
The cardiology department called today. They feel it is important that they also do an MRI on Lexi. There is some concern about her blood vessels around her heart being too narrow. This can be very dangerous and even fatal. However, the cardiac MRI is 2 hours, along with the brain MRI, that makes it a 3 hour test. The cardiac anesthesiologist only wants to put Lexi under once. So, after phone calls with cardiology, neurology, and opthomology, the doctors feel it best that we wait and schedule both MRIs for September 1st (the 1st available for such a lengthy test). The time is set for 7am!! (This means another stay in Cleveland- we're going to check into the Ronald McDonald house!). So, we will not have any more news (we hope!) until after the 1st. We knew people would be praying and checking up tomorrow so we wanted to let you all know! With Lexi's 2 aortic narrowings, it is definitely better to be safe then rush into things!
Thank you for your continue prayers! Pray that Lexi's vision is not too affected the next 2 weeks as we wait for the MRI.
Thank you for your continue prayers! Pray that Lexi's vision is not too affected the next 2 weeks as we wait for the MRI.
Wednesday, August 12, 2009
Wednsday, August 12- update on MRI
This will be brief, but we wanted to let everyone know that our wonderful neurologist (and we mean it!) managed to talk the radiologist into double-booking an MRI for Lexi! We see our family doctor on Monday for her physical. We have the Ok from the cardiologist to proceed, so, it looks like we're set for 10am next Tuesday! So, she has a sedated MRI next Tuesday. Typically, MRI's really aren't that big of a deal, but, because of Lexi's age, size and cardiac history, she will be going under full anesthesia and most likely be put on a ventilator again. In addition, they warned us that they may have to admit her following the MRI because of her past history in order to carefully monitor her coming out of anesthesia. She did well on her EMG, so we're hoping just a few hours in recovery will be all she needs and we can avoid another hospital stay- even a short one!
Please pray that Lexi's MRI goes well and that the doctors get a clear picture as to what is happening. Lexi right eye is pretty severe and we are very concerned!
Please also pray that the anesthesia goes well and Lexi is able to come home on the same day!
We'll post again next week after the MRI! They will have the results back in 24 hours after the scan!
Please pray that Lexi's MRI goes well and that the doctors get a clear picture as to what is happening. Lexi right eye is pretty severe and we are very concerned!
Please also pray that the anesthesia goes well and Lexi is able to come home on the same day!
We'll post again next week after the MRI! They will have the results back in 24 hours after the scan!
Monday, August 10, 2009
August 10, 2009- Follow-up from neurology
We saw a neurologist today. We actually saw 2 as the first doctor wanted to get a second opinion as Lexi's "symptoms" are extremely unusual. Our neurologist was on vacation, but it was good to get two new perspectives. The neurologist think that there is an issue with Lexi's brainstem and sending correct responses to her eyes. This would be related to the cranial damage she had following her heart surgery. They "mystery" is why this is just now coming up. That is why there is so much concern. They want to do an MRI as soon as possible. However, the first available isn't until September 1st. The neurologist do not feel this is soon enough so they are going to make some calls tomorrow and work her in. The difficult thing is that Lexi has to be sedated so they have to involve a pediatric anesthesiologist that specializes in cardiac. The neurologist today think that Lexi has some neuron damage on her brainstem from lack of oxygen or blood supply during surgery. Hopefully, this will be shown in the MRI. Otherwise, it's a "guess" and we will go back to Opthomology to look into eye surgery in the next few weeks.
Please pray that we are able to get Lexi worked in sooner for her MRI!! Thank you all for your concern!
Please pray that we are able to get Lexi worked in sooner for her MRI!! Thank you all for your concern!
Sunday, August 9, 2009
Sunday, August 9,2009- Busy week!
We have had a very busy week this past week for Alexis! Let me explain:
Alexis' has been having some issues with her eyes turning inward. We noticed it about 3 weeks ago but thought it may be just a phase. This past week her therapists and my sister, Holly, commented on it. We took her to see the pediatrician at Blanchard Valley Hospital and he said it is definitely of concern. So, off we went for our 2nd trip to Cleveland this past week. On Monday, we went to see GI and ENT. Thursday, we saw Opthomology. The opthomologist are also concerned as to what is causing her eyes to turn in so quickly. In addition, it quickly affects infant's vision as it is still developing. The good news is that it is not her optic nerve (cranial nerve 3), which means there is no immediate danger to Lexi's vision. The opthomologist are pretty sure it is due to her cranial nerve damage- this would be cranial nerve 6. So now, we have been worked into see her neurologist on Monday (tomorrow). The neurologist plan to do a full neurological exam Monday, most likely followed by an MRI sometime this week. If things do not progress in the next 3-4 weeks, they will be scheduling her for eye surgery. Obviously, Lexi does not need any more "strikes" against her. Please pray that the neurological exam goes well on Monday and this is only a very temporary issue from her nerve damage.
Lexi's therapies are going well but her progress remains slow. Her vision troubles are definitely of concern to the therapist as vision drives a lot of physical milestones. We are still working with Lexi on grasping toys with her hands, eating and now are starting to work on her sitting up. The best news is that Lexi is now giving some pretty big smiles on a regular basis (especially for her mommy!) The GI doctor on Monday is still concerned about her size, so they have increased her calories via formula. Lexi gaining weight more quickly will also hopefully help with her physical milestones.
Please pray for traveling as we make our 3rd trip to Cleveland in a week. Lexi usually only lasts about 1 hour in her car seat. Pray that she remains peaceful and patient.
Pray the Lexi's exam goes well tomorrow and that, regardless of the outcome, the doctors can find out exactly what is causing this sudden vision problem.
We will try to post some information later this week after we meet with neurology.
Alexis' has been having some issues with her eyes turning inward. We noticed it about 3 weeks ago but thought it may be just a phase. This past week her therapists and my sister, Holly, commented on it. We took her to see the pediatrician at Blanchard Valley Hospital and he said it is definitely of concern. So, off we went for our 2nd trip to Cleveland this past week. On Monday, we went to see GI and ENT. Thursday, we saw Opthomology. The opthomologist are also concerned as to what is causing her eyes to turn in so quickly. In addition, it quickly affects infant's vision as it is still developing. The good news is that it is not her optic nerve (cranial nerve 3), which means there is no immediate danger to Lexi's vision. The opthomologist are pretty sure it is due to her cranial nerve damage- this would be cranial nerve 6. So now, we have been worked into see her neurologist on Monday (tomorrow). The neurologist plan to do a full neurological exam Monday, most likely followed by an MRI sometime this week. If things do not progress in the next 3-4 weeks, they will be scheduling her for eye surgery. Obviously, Lexi does not need any more "strikes" against her. Please pray that the neurological exam goes well on Monday and this is only a very temporary issue from her nerve damage.
Lexi's therapies are going well but her progress remains slow. Her vision troubles are definitely of concern to the therapist as vision drives a lot of physical milestones. We are still working with Lexi on grasping toys with her hands, eating and now are starting to work on her sitting up. The best news is that Lexi is now giving some pretty big smiles on a regular basis (especially for her mommy!) The GI doctor on Monday is still concerned about her size, so they have increased her calories via formula. Lexi gaining weight more quickly will also hopefully help with her physical milestones.
Please pray for traveling as we make our 3rd trip to Cleveland in a week. Lexi usually only lasts about 1 hour in her car seat. Pray that she remains peaceful and patient.
Pray the Lexi's exam goes well tomorrow and that, regardless of the outcome, the doctors can find out exactly what is causing this sudden vision problem.
We will try to post some information later this week after we meet with neurology.
Sunday, July 5, 2009
Sunday, July 5th
Happy 4th (a day late!). We have had a very stressful week, but I wanted to blog ASAP about Lexi's EMG results.
Lexi's test went well last Monday. The entire procedure took about 3 hours from the time they did the prep until she was out of recovery. In total, they stuck 18 needles in her face but were not able to test her tongue this time. The neurologist called on Wednesday with the results. The good news is that Lexi does not show any signs of regression- meaning she's not losing any facial nerve function. The results are measured in terms of waves. Lexi's waves are bigger, showing more signs of regeneration (this is great news- definitely the right direction!). However, there are not as many waves as their were in January (meaning the regeneration seems to be slowing down some- not such good news). At "best guess," the neurologist thinks it could be another 12-18 months for Lexi's facial nerve damage to "heal," if she ever does regain full control. her forehead looks good but her right side of her face is still considered severe and the left side is moderately severe. Finally, the neurologist thinks that since there is some healing with Lexi's facial nerves and her swallowing does not seem to be improving as well, he feels there may be some additional damage with Lexi's throat/swallowing mechanisms. He has recommended that we take more evasive action with ENT and GI and do some additional procedures to find out exactly what is happening with her swallowing. So, to some up, we got some good news, but not as great as we were hoping for:-)
From a cardiology standpoint, the new cardiologist we saw in Cleveland does not feel anything needs to be done immediately with Lexi's heart (thank the Lord!). They are more concerned now with her SVAS (Supra-valvular aortic stenosis), which is a new narrowing found right above her aortic valve. They are also watching the blood vessels around her heart as the left side is narrowed. If blood vessels on both sides of the heart are too narrow, this can become fatal. The cardiologists would like to schedule an MRI for Lexi in the fall to be certain everything looks ok.
On a side note- our family is finally settling in to our new home and we are excited about the extra room for Lexi and the twins. It has been very difficult to unpack with 3 little ones running around. We are anxious to get Lexi back into her nursing and therapy routine. Lexi's feeding tube got pulled out this weekend (which completely frightened me!). Thank God for our nurse that came over at 5pm on July 4th! He was able to put a new tube in Lexi and avoid a trip to the ER.
Prayer Requests:
Please pray for Lexi's facial nerve damage. Pray that we are able to see drastic improvement the next few months. Pray for wisdom for the neurologist and all doctors involved in her care. We will be seeing 3 doctors in August (endocrinology, ENT and GI) and 4 in October (neurology, cardiology, Opthomology and a feeding specialist).
Pray for Lexi's heart. Pray that the doctor's do not find narrowing in her blood vessels.
Pray for our family as we work on getting established in our new home.
Thank you again for your continued prayers. Lexi is getting so big- we will post some new pictures on the blog soon!
Lexi's test went well last Monday. The entire procedure took about 3 hours from the time they did the prep until she was out of recovery. In total, they stuck 18 needles in her face but were not able to test her tongue this time. The neurologist called on Wednesday with the results. The good news is that Lexi does not show any signs of regression- meaning she's not losing any facial nerve function. The results are measured in terms of waves. Lexi's waves are bigger, showing more signs of regeneration (this is great news- definitely the right direction!). However, there are not as many waves as their were in January (meaning the regeneration seems to be slowing down some- not such good news). At "best guess," the neurologist thinks it could be another 12-18 months for Lexi's facial nerve damage to "heal," if she ever does regain full control. her forehead looks good but her right side of her face is still considered severe and the left side is moderately severe. Finally, the neurologist thinks that since there is some healing with Lexi's facial nerves and her swallowing does not seem to be improving as well, he feels there may be some additional damage with Lexi's throat/swallowing mechanisms. He has recommended that we take more evasive action with ENT and GI and do some additional procedures to find out exactly what is happening with her swallowing. So, to some up, we got some good news, but not as great as we were hoping for:-)
From a cardiology standpoint, the new cardiologist we saw in Cleveland does not feel anything needs to be done immediately with Lexi's heart (thank the Lord!). They are more concerned now with her SVAS (Supra-valvular aortic stenosis), which is a new narrowing found right above her aortic valve. They are also watching the blood vessels around her heart as the left side is narrowed. If blood vessels on both sides of the heart are too narrow, this can become fatal. The cardiologists would like to schedule an MRI for Lexi in the fall to be certain everything looks ok.
On a side note- our family is finally settling in to our new home and we are excited about the extra room for Lexi and the twins. It has been very difficult to unpack with 3 little ones running around. We are anxious to get Lexi back into her nursing and therapy routine. Lexi's feeding tube got pulled out this weekend (which completely frightened me!). Thank God for our nurse that came over at 5pm on July 4th! He was able to put a new tube in Lexi and avoid a trip to the ER.
Prayer Requests:
Please pray for Lexi's facial nerve damage. Pray that we are able to see drastic improvement the next few months. Pray for wisdom for the neurologist and all doctors involved in her care. We will be seeing 3 doctors in August (endocrinology, ENT and GI) and 4 in October (neurology, cardiology, Opthomology and a feeding specialist).
Pray for Lexi's heart. Pray that the doctor's do not find narrowing in her blood vessels.
Pray for our family as we work on getting established in our new home.
Thank you again for your continued prayers. Lexi is getting so big- we will post some new pictures on the blog soon!
Subscribe to:
Posts (Atom)
