Samuel has been to follow-up appointments with each of his doctors at least once since coming home six weeks ago! (We actually went to our third pulmonary and second neurology follow-ups today.) And all of them have given good news, but more importantly, sent him back home with us after his appointment. YEA!
Here's a bit of what I know... I learn more every day :) It's been a while since a medical post, sorry it's kind of long. But, scroll to the end for pictures! (I'm sure there are things I forgot, but I hope this gives an overview of where we stand...)
- Pulmonary -
Samuel's lungs seem to be getting a little bit better every day! The great news is that it appears we have his CO2 retention problem figured out - fingers crossed :) His CO2 levels have been great the last six weeks - and we would know... we've done entirely too many blood tests. (Poor kid, his PIC line - permanent IV - had to come out a few weeks ago because it started falling apart. Scary! So since then we've had to stick him for tests.) But, they were all worth it... each one has increased our confidence in being on a plan that is working for Samuel.
We started trach collar trials again! Actually, at this point we are up to 2.5 hours and attempting 3 hours tomorrow! The trach collar is a device which allows Samuel to be a little more mobile and to have time off the ventilator. It still provides a higher level of oxygen then we breath, and it provides humidity, but it does not provide the pressure support that the ventilator does. The pressure support helps to keep Samuel's lungs and air sacs open each time he takes a breath... to be on the trach collar you have to be strong enough to do that on your own.
We have also tried Samuel's passy muir valve - his speaking valve - while on the trach collar. Sometimes he doesn't like it, but most of the time he can't stop talking... he loves being able to make real noise! Usually he can make a little noise, but it's just air leaking around the trach. The way the speaking valve works is that is allows him to breath in through the stoma, but not out. It forces him to breath out through his mouth. This is a first for Samuel, and it's got to feel weird! The passy muir wears him out a bit... and he can only be on the passy muir when on the trach collar... but our first goal is to increase time on the trach collar, so if he gets tired we skip the passy muir. We love hearing our baby talk!
Wish list: continue to increase time on the trach collar! The way weening off of the ventilator works is they don't change the vent settings... once we know what works on the vent, we leave it alone. Instead, we work on increasing the amount of time Samuel can be off of the vent and on trach collar.
- Neurology -
Samuel's brain is looking good! He still has some hydrocephalus... which is swelling in the main ventricles in his head. This can cause problems if the swelling begins to change the way the brain is forming or developing, but so far it looks okay. They can do a surgical procedure to shunt the ventricles and relieve all of the pressure, but in Samuel's respiratory state I don't think this is really an option. Plus, at this point it doesn't appear to be necessary. BTW - it's crazy to see an MRI of your child's head and brain... they take so many pictures that as you look through the images it's as if you are looking down into the brain just a little further and further with each picture.
In my non-medical mind, almost everything relates back to the brain, so now that we are moving "beyond the breathing," as our pulmonologist mentioned, we are even more focused on what is going on with the rest of Samuel. Unfortunately there is no way to tell if there has been damage to his neurological ability. We do know things seem to be firing correctly, but things like object permanence are still things Samuel doesn't have. Much of this could be simply due to so much time in the hospital... only time will tell. Good to hear, but I would have given anything to hear that absolutely, everything is going to be okay. I mean, I know everything will be okay... I would just like to hear it :)
Wish list: that the hydrocephalus improves on it's own and that there is no lasting damage from Samuel's crazy first year.
- Cardiology -
Samuel's pulmonary hypertension seems to be either staying the same or getting better. Bottom line - it's not getting worse. This is GREAT news! From what I understand, one of the reasons Samuel made it through last summer was because his pulmonary hypertension wasn't worse... if it were to get worse, this could mean serious trouble for our little guy.
He also has an ASD, which is a hole in his heart. Samuel had a PDA as well, but that was ligated when he was about 2 pounds :) (George has his PDA and ASD fixed back in December.) It's amazing though, the ASD may have actually formed to protect Samuel's heart... to provide a place for the extra pressure to go if it gets too high. We are so perfectly designed :)
Wish list: that the pulmonary hypertension improves and Samuel's heart stays strong like bull.
- Ophthalmology -
Samuel is still showing signs of strabismus, but not nystagmus - yea! In other words, his eyes no longer shake or go cross eyed, but they do still point out (the opposite of cross eyed) from time to time. This really worried me, but the appointment was incredible.
Ever since he woke up from his paralysis last July, his eyes haven't been the same. They have gotten increasingly better, and I think stronger, but still a little googlie a lot of the time. I was really worried it was a connection to his brain, but it actually seems to be kind of like an eye-sight developmental delay. YEA! I didn't know that was possible! Apparently the natural path of the eyes is to point out - it's the way our eye sockets are shaped, but our brain tells our eyes to point forward. So, it seems that Samuel is simply still learning to point his eyes forward :) As long as his eyes point forward some of the time, then his brain still knows what to do and hopefully his eyes will get straighter as time goes on... if at any point his eyes point out all the time, then we would need to consider surgery right away. We don't see this happening.
Regardless, Samuel may have some type of eye surgery in the future... the doctor said there is probably a 50/50 chance, to which I replied, "50/50? Sweet! We've had worse." Such a smart alec :)
Wish list: the strabismus continues to improve and those sweet eyes continue to smile at the world.
- ENT (Ears Nose & Throat) -
The trach looks good... no changes. Probably another bronchoscopy - a look at his airway - during the summer.
- Audiology -
It's hard to do a hearing test on a 1-year old, but I give huge credit to them for trying! More than anything, I think they just wanted to get a benchmark and to be sure he was hearing something at all. He does hear! How well, we're not really sure... we will probably get the newborn hearing screening done the next time he has to go under general anesthetic, because he's a big boy now they can't do it if he's awake.
- Physical development -
We have a wonderful occupational therapist who has been a part of our family since last summer! And are incredibly blessed to have friends who are therapists who come to play with him, especially while we continue to look for people who will be his official Physical Therapist and Speech Therapist! (If you know of anyone willing to come to our house to provide either of these services, please let me know! This is a huge frustration of mine that we don't have anyone yet.)
Samuel gets OT twice per week, and we are working a lot on flexibility... he is very stiff, his neck still sits on his shoulders, and he is still pretty weak. Samuel can sit, assisted, for brief periods of time, but has no protective responses and after a while his weaknesses in his neck, back, and abdomen start to really show. He can't quite get onto his tummy for more than a minute or so, but we are working on different ways to give him that opportunity.
The physical development is one of the most noticeable from day to day... once you get used to the trach and the machines I guess :) We so badly want him to be able to interact more with his brother and sister... and to be able to turn his entire body, not just his head, to look at something... and to be able to get a toy that is out of his immediate reach. BUT, our happiness at having him home out ways the sadness of the many hurdles Samuel still has. We have some sadness, we want so many things for Samuel and we want them to happen right now... but once again, the joy wins! More then SIX WEEKS home!
Wish list: for him to get stronger every day and to add to our team of professionals working with Samuel here in our town.
Here's a bit of what I know... I learn more every day :) It's been a while since a medical post, sorry it's kind of long. But, scroll to the end for pictures! (I'm sure there are things I forgot, but I hope this gives an overview of where we stand...)
- Pulmonary -
Samuel's lungs seem to be getting a little bit better every day! The great news is that it appears we have his CO2 retention problem figured out - fingers crossed :) His CO2 levels have been great the last six weeks - and we would know... we've done entirely too many blood tests. (Poor kid, his PIC line - permanent IV - had to come out a few weeks ago because it started falling apart. Scary! So since then we've had to stick him for tests.) But, they were all worth it... each one has increased our confidence in being on a plan that is working for Samuel.
We started trach collar trials again! Actually, at this point we are up to 2.5 hours and attempting 3 hours tomorrow! The trach collar is a device which allows Samuel to be a little more mobile and to have time off the ventilator. It still provides a higher level of oxygen then we breath, and it provides humidity, but it does not provide the pressure support that the ventilator does. The pressure support helps to keep Samuel's lungs and air sacs open each time he takes a breath... to be on the trach collar you have to be strong enough to do that on your own.
We have also tried Samuel's passy muir valve - his speaking valve - while on the trach collar. Sometimes he doesn't like it, but most of the time he can't stop talking... he loves being able to make real noise! Usually he can make a little noise, but it's just air leaking around the trach. The way the speaking valve works is that is allows him to breath in through the stoma, but not out. It forces him to breath out through his mouth. This is a first for Samuel, and it's got to feel weird! The passy muir wears him out a bit... and he can only be on the passy muir when on the trach collar... but our first goal is to increase time on the trach collar, so if he gets tired we skip the passy muir. We love hearing our baby talk!
Wish list: continue to increase time on the trach collar! The way weening off of the ventilator works is they don't change the vent settings... once we know what works on the vent, we leave it alone. Instead, we work on increasing the amount of time Samuel can be off of the vent and on trach collar.
- Neurology -
Samuel's brain is looking good! He still has some hydrocephalus... which is swelling in the main ventricles in his head. This can cause problems if the swelling begins to change the way the brain is forming or developing, but so far it looks okay. They can do a surgical procedure to shunt the ventricles and relieve all of the pressure, but in Samuel's respiratory state I don't think this is really an option. Plus, at this point it doesn't appear to be necessary. BTW - it's crazy to see an MRI of your child's head and brain... they take so many pictures that as you look through the images it's as if you are looking down into the brain just a little further and further with each picture.
In my non-medical mind, almost everything relates back to the brain, so now that we are moving "beyond the breathing," as our pulmonologist mentioned, we are even more focused on what is going on with the rest of Samuel. Unfortunately there is no way to tell if there has been damage to his neurological ability. We do know things seem to be firing correctly, but things like object permanence are still things Samuel doesn't have. Much of this could be simply due to so much time in the hospital... only time will tell. Good to hear, but I would have given anything to hear that absolutely, everything is going to be okay. I mean, I know everything will be okay... I would just like to hear it :)
Wish list: that the hydrocephalus improves on it's own and that there is no lasting damage from Samuel's crazy first year.
- Cardiology -
Samuel's pulmonary hypertension seems to be either staying the same or getting better. Bottom line - it's not getting worse. This is GREAT news! From what I understand, one of the reasons Samuel made it through last summer was because his pulmonary hypertension wasn't worse... if it were to get worse, this could mean serious trouble for our little guy.
He also has an ASD, which is a hole in his heart. Samuel had a PDA as well, but that was ligated when he was about 2 pounds :) (George has his PDA and ASD fixed back in December.) It's amazing though, the ASD may have actually formed to protect Samuel's heart... to provide a place for the extra pressure to go if it gets too high. We are so perfectly designed :)
Wish list: that the pulmonary hypertension improves and Samuel's heart stays strong like bull.
- Ophthalmology -
Samuel is still showing signs of strabismus, but not nystagmus - yea! In other words, his eyes no longer shake or go cross eyed, but they do still point out (the opposite of cross eyed) from time to time. This really worried me, but the appointment was incredible.
Ever since he woke up from his paralysis last July, his eyes haven't been the same. They have gotten increasingly better, and I think stronger, but still a little googlie a lot of the time. I was really worried it was a connection to his brain, but it actually seems to be kind of like an eye-sight developmental delay. YEA! I didn't know that was possible! Apparently the natural path of the eyes is to point out - it's the way our eye sockets are shaped, but our brain tells our eyes to point forward. So, it seems that Samuel is simply still learning to point his eyes forward :) As long as his eyes point forward some of the time, then his brain still knows what to do and hopefully his eyes will get straighter as time goes on... if at any point his eyes point out all the time, then we would need to consider surgery right away. We don't see this happening.
Regardless, Samuel may have some type of eye surgery in the future... the doctor said there is probably a 50/50 chance, to which I replied, "50/50? Sweet! We've had worse." Such a smart alec :)
Wish list: the strabismus continues to improve and those sweet eyes continue to smile at the world.
- ENT (Ears Nose & Throat) -
The trach looks good... no changes. Probably another bronchoscopy - a look at his airway - during the summer.
- Audiology -
It's hard to do a hearing test on a 1-year old, but I give huge credit to them for trying! More than anything, I think they just wanted to get a benchmark and to be sure he was hearing something at all. He does hear! How well, we're not really sure... we will probably get the newborn hearing screening done the next time he has to go under general anesthetic, because he's a big boy now they can't do it if he's awake.
- Physical development -
We have a wonderful occupational therapist who has been a part of our family since last summer! And are incredibly blessed to have friends who are therapists who come to play with him, especially while we continue to look for people who will be his official Physical Therapist and Speech Therapist! (If you know of anyone willing to come to our house to provide either of these services, please let me know! This is a huge frustration of mine that we don't have anyone yet.)
Samuel gets OT twice per week, and we are working a lot on flexibility... he is very stiff, his neck still sits on his shoulders, and he is still pretty weak. Samuel can sit, assisted, for brief periods of time, but has no protective responses and after a while his weaknesses in his neck, back, and abdomen start to really show. He can't quite get onto his tummy for more than a minute or so, but we are working on different ways to give him that opportunity.
The physical development is one of the most noticeable from day to day... once you get used to the trach and the machines I guess :) We so badly want him to be able to interact more with his brother and sister... and to be able to turn his entire body, not just his head, to look at something... and to be able to get a toy that is out of his immediate reach. BUT, our happiness at having him home out ways the sadness of the many hurdles Samuel still has. We have some sadness, we want so many things for Samuel and we want them to happen right now... but once again, the joy wins! More then SIX WEEKS home!
Wish list: for him to get stronger every day and to add to our team of professionals working with Samuel here in our town.
The Piano Man strikes again... with encouragement :)
Yeah George, I guess this is okay...But Olivia, let me show you what it can really do!
You're right, this is fun!
Go Olivia, go Olivia...
Woo Hoo! Now that's music I can dance to Olivia!
George, it's just a bunch of white and black keys...
But see, Samuel, check this out...
I like it!
Pretty sure we can play chopsticks if we put our musical genius together!
Music is fun! And George is fun-ny :)
Here I go... rockin' out!
2 comments:
I love everything about this post. Thank you SO much for the update. Samuel looks awesome! I hope all your wishes come true!
Hugs and love to you all!
Rik
Hi, my name is Christie I am with Marpac. It is amazing to see Samuel playing and enjoying himself. If you ever need a custom fit or additional trach collars we have pediatric trach collars and I can send you some samples.
Check out our website: marpacathome.com
email: cservantez@marpac.biz
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