What happens when I don't post for a few months? A lot. Mostly not that great, but there is a light at the end of the tunnel, so to speak.
Over the last couple of months, Val and I have watched our sweet girl lose a lot of skills she worked hard to achieve. As a parent, that is hard to watch. Despite cognitively being as she always has been (and yes, we are lucky and grateful for that), her motor skills have really declined, with no real explanation other than disease progression. She's lost more function in her right hand/arm, her left hand is now less coordinated, her walking has tanked despite a bigger brace on her right foot, her chewing/swallowing has become labored and her speech more difficult to understand, and her anxiety has increased again.
Last week we reached out to our local metabolic doc who after hearing our description of issues, was concerned about a stroke. Due to Samantha's mutation, she absolutely is at risk of strokes. However, we suspected it was not something as acute as a stroke as we have seen these changes occur gradually (although the last few weeks it does seem they progressed faster). Nonetheless, it was decided we would make a trip to the ER to rule out a stroke. We were stubborn and waited until the morning as we were not up for taking a sleepy kid to the ER to be poked and prodded. Once the ER folks examined Sam and talked with us, a stroke was soon ruled out. The neurologist on call was very sweet to us, but really did not suggest much in terms of how to help Samantha get back to where she was a few months ago. Instead, she gave us the "look" and talked about quality of life. While we appreciate how serious a diagnosis Leigh's is, we are not quite ready for that talk yet, and we have seen our girl bounce back before.
We went home a bit (a lot) deflated last week and began to deal with more anxiety in our girl caused by the day at the ER. Deciding that perhaps the local, nationally acclaimed hospital might not be what we always need, we reached out to Dr. C in Ohio again. Val talked with him at length on the phone and via email, and it was decided we should go out and see him ASAP. In addition, we decided that despite the distance, we would prefer to have him be our primary neurologist going forward. To be honest, the neurologist we've felt the most connection to at our local hospital is leaving in July anyway, so this is actually perfect timing.
Through small miracles and the generosity of kind people, we were able to get to Ohio yesterday on a private flight (trying to get a commercial flight squared away for a trach/vent kid in less than a few days is darn near impossible, and driving would have Val away from patients far too long).
Dr. C spent many hours with us yesterday and today. He felt there were some holes in Samantha's treatment plan and was willing to provide hope that perhaps we can get Samantha back to where she was a few months ago. Hope is good. Very good. Dr. C is increasing a few meds, and adding two more. In addition, we are going to give Samantha a couple of hours of "vent" time during the day to see if that helps conserve her energy level. Finally, she had two blood draws today to see how well she is absorbing the EPI-743. If she is not absorbing it as she should, there are definite ways to help fix that problem.
The truth is, as wonderful as Dr. C is (and I do mean truly wonderful), there is no guarantee that any of this will work. The other truth is, as a parent and primary caregiver to the most wonderful being in the world, this man is the best thing that we have found for her. Val and I trust him, and his desire to help. We believe in him. And, he believes in Sam getting better. Even if none of this works, it is comforting to know that we have given our daughter's care to someone we feel truly deserves the honor.
Until next time,
Monica
Thursday, May 31, 2012
Sunday, February 19, 2012
A year ago
Yesterday marked one year ago that Samantha went into respiratory failure. I can't imagine that we almost lost her. The events of that day will always be cemented in my memory. Our family surrounding us while our little girl was being saved by the team at CHOP. To call it a surreal moment is definitely an understatement.
This past year has been a roller coaster of emotions, hospital stays, ER visits, nursing schedules and lots of new equipment to adjust to. Val and I went from thinking we may lose her within a week, to watching her get back to herself and then some, to thinking we would be able to remove the trach, to realizing that at least for now, the trach has to stay.
And by the trach/vent staying, that means that we keep the equipment, the extra bags, the nursing care. The crazy that is our daily lives.
Val and I are always trying to adjust to whatever has been thrown at us....all the while making sure that Samantha has the best time she possibly can. If her disposition is any indication, she seems to be having a ball. Despite her health issues and various accessories, we have been rewarded with one of the most loving, smiling, sweetest little girls. As usual, I have no idea what the future will hold. But, I suppose that is true for all of us.
Until next time,
Monica
This past year has been a roller coaster of emotions, hospital stays, ER visits, nursing schedules and lots of new equipment to adjust to. Val and I went from thinking we may lose her within a week, to watching her get back to herself and then some, to thinking we would be able to remove the trach, to realizing that at least for now, the trach has to stay.
And by the trach/vent staying, that means that we keep the equipment, the extra bags, the nursing care. The crazy that is our daily lives.
Val and I are always trying to adjust to whatever has been thrown at us....all the while making sure that Samantha has the best time she possibly can. If her disposition is any indication, she seems to be having a ball. Despite her health issues and various accessories, we have been rewarded with one of the most loving, smiling, sweetest little girls. As usual, I have no idea what the future will hold. But, I suppose that is true for all of us.
Until next time,
Monica
Friday, February 10, 2012
Just a brief update....
Samantha continues to get better following her bout with RSV a few weeks ago. Sammy is still on her vent at night and also getting her overnight tube feeds. We feel the combination seems to have brought back some of her spunk that she was missing a month or so ago. She is toddling more and seems to have more energy than she had about a month ago.
While Val and I are upset that we won't be removing the trach anytime soon, we are very happy that adding back in those two things seems to be helping again. And of course, Samantha continues to take EPI-743 which we feel is doing wonders for her.
Until next time,
Monica
While Val and I are upset that we won't be removing the trach anytime soon, we are very happy that adding back in those two things seems to be helping again. And of course, Samantha continues to take EPI-743 which we feel is doing wonders for her.
Until next time,
Monica
Wednesday, January 18, 2012
No news WAS good news
As usual, I am a horrible blogger. There has been lots going on however, and I will try to update as best, and as briefly as I can.
When we last left our heroine, she was riding into the sunset on her first pony ride. Right around Halloween was the best Sammy has ever been, and I hope the pics from the last post show it.
At the end of November, Samantha caught an illness of some sort, with fever, congestion etc. It eventually passed and no real intervention was needed. However, Val and I began to think a few weeks ago that the cold had a negative impact on her. We also had changed some things in Samantha's care within the last few months. (Sam became vent free in September, and the next month, due to lots of weight gain and eating tons, we cut out her overnight tube-feeds and replaced them with water to ensure she was still getting all of her hydration. )
Sammy was still doing all the things she had been doing (walking, talking, eating lots, funny and cute as ever). But we noticed around the holidays that she didn't want to walk as much. She wanted to play less, be picked up more etc and so forth.
While Samantha's numbers were still fine (CO2 levels, o2 levels), Val and I couldn't help but flashback to last year. We both agreed that this slowdown in Samantha was reminding us a lot of last year. Sam started slowing up a couple of months before she went into respiratory failure. We did not want to go down that road again, and were thinking perhaps we would give her additional help NOW, before things spiraled as they did last year around this same time.
A week and a half ago, we consulted with Dr. C in Ohio and expressed our new concerns. He agreed that although he still feels that the EPI-743 is doing wonders for Samantha (as do we), perhaps adding back in some of the care that we had felt she "graduated" from would be a good idea. He was very kind in his email and did mention that as parents/professionals, there is a tendency to "move away from the technology that helps--which is fine until we need it again, and then we should use it". He encouraged us that this was not a step backwards at all.
So, last Monday morning we made the decision to bring the vents back into the house so that we could allow Samantha to use vent support at night to see if that helps bring back some of her previous energy. On Monday, Val and I were feeling a little down as we both were really looking forward to taking out her trach in March. Bringing the vents back in meant that at the very least, this step would be delayed a little until we figured things out a little more.
And then, on Monday night, Samantha got sick. She went from being totally ok in the morning, to having a fever, cough, congestion and throwing up by Monday night. She stopped eating. Sam stopped wanting to play. Thankful for her g-tube, we and her nurses tried to hydrate her as best we could. On Tuesday her vents came back so we put her on the vent that night. She continued to have fevers on Wednesday, and we grew increasingly concerned. We made the decision on Wednesday to go to the ER and got some bloodwork and a chest x-ray--both of which were unremarkable. Samantha hates the ER more than anything else and was not happy to be there--getting poked and prodded. Sammy was crying and very upset in addition to just feeling horrible. Therefore, despite our reservations about leaving, when the attending doctor told us things were ok enough to go home and to continue to keep her hydrated through her tube, we jumped at the chance to get her out of there.
Instead of getting better, Samantha continued to get worse. She wanted to lay in bed all day, and didn't even want to watch Sesame Street on TV. Sammy continued to refuse food and was throwing up a lot of the liquids we were putting in her g-tube. Her cough sounded horrible and she seemed like she was in pain. Again we reached out to Dr. C on Friday who told us to go straight back to the ER and request IV fluids. He cautioned us that the doctors cannot treat Samantha like a typical kid. And, that her Leigh's disease means that she needs extra support even during a normal routine childhood illness.
Friday afternoon we headed back to the ER, and THAT attending doctor was surprised that the attending on Wednesday did not admit us right then and there. So, we got a bed in the PICU Friday night and more bloodwork was run. As she had been on antibiotics for several days and still had a fever, they ran a tests for viral illnesses. To be honest I thought that was done on Wednesday and had come back with nothing. On Saturday morning, we found out that she tested positive for RSV. We aren't sure how that could happen as we are very protective when it comes to Samantha and germs. But, I guess you really can't prevent a child from getting sick, no matter how hard you try.
The PICU kept her hydrated through IV fluids. On Friday night we were really concerned when Samantha started desatting while on her vent, so O2 was added. That was the first time Sam has ever needed o2 while on her vent.
Although Samantha still wasn't eating, we kept trying to use her tube to get her formula in her. When she was tolerating her feeds again, we stopped the IV. And, finally on Saturday night her fevers stopped. In addition, we were able to stop the o2 use. On Monday we took her off of her vent for the first time in days. The doctor on Monday felt that if there were no negative events, we could probably go home on Tuesday and continue to get her stronger there (if there was no IV fluids needed anymore, there was no real need for us to be there as we have a lot of things in place (feeds, vents) at home.
Yesterday (Tuesday), she was obviously still feeling better, and we got the official clearance to go home. And here we are. I am happy to report that Samantha ate a pancake this morning. And wanted to "play" for the first time in over a week. She is now relaxing watching Sesame Street.
Sammy still seems a little weaker than her normal self. But that is to be expected considering where she spent the weekend. Val, Sammy and I are all very, VERY happy to be home.
Until next time,
Monica
When we last left our heroine, she was riding into the sunset on her first pony ride. Right around Halloween was the best Sammy has ever been, and I hope the pics from the last post show it.
At the end of November, Samantha caught an illness of some sort, with fever, congestion etc. It eventually passed and no real intervention was needed. However, Val and I began to think a few weeks ago that the cold had a negative impact on her. We also had changed some things in Samantha's care within the last few months. (Sam became vent free in September, and the next month, due to lots of weight gain and eating tons, we cut out her overnight tube-feeds and replaced them with water to ensure she was still getting all of her hydration. )
Sammy was still doing all the things she had been doing (walking, talking, eating lots, funny and cute as ever). But we noticed around the holidays that she didn't want to walk as much. She wanted to play less, be picked up more etc and so forth.
While Samantha's numbers were still fine (CO2 levels, o2 levels), Val and I couldn't help but flashback to last year. We both agreed that this slowdown in Samantha was reminding us a lot of last year. Sam started slowing up a couple of months before she went into respiratory failure. We did not want to go down that road again, and were thinking perhaps we would give her additional help NOW, before things spiraled as they did last year around this same time.
A week and a half ago, we consulted with Dr. C in Ohio and expressed our new concerns. He agreed that although he still feels that the EPI-743 is doing wonders for Samantha (as do we), perhaps adding back in some of the care that we had felt she "graduated" from would be a good idea. He was very kind in his email and did mention that as parents/professionals, there is a tendency to "move away from the technology that helps--which is fine until we need it again, and then we should use it". He encouraged us that this was not a step backwards at all.
So, last Monday morning we made the decision to bring the vents back into the house so that we could allow Samantha to use vent support at night to see if that helps bring back some of her previous energy. On Monday, Val and I were feeling a little down as we both were really looking forward to taking out her trach in March. Bringing the vents back in meant that at the very least, this step would be delayed a little until we figured things out a little more.
And then, on Monday night, Samantha got sick. She went from being totally ok in the morning, to having a fever, cough, congestion and throwing up by Monday night. She stopped eating. Sam stopped wanting to play. Thankful for her g-tube, we and her nurses tried to hydrate her as best we could. On Tuesday her vents came back so we put her on the vent that night. She continued to have fevers on Wednesday, and we grew increasingly concerned. We made the decision on Wednesday to go to the ER and got some bloodwork and a chest x-ray--both of which were unremarkable. Samantha hates the ER more than anything else and was not happy to be there--getting poked and prodded. Sammy was crying and very upset in addition to just feeling horrible. Therefore, despite our reservations about leaving, when the attending doctor told us things were ok enough to go home and to continue to keep her hydrated through her tube, we jumped at the chance to get her out of there.
Instead of getting better, Samantha continued to get worse. She wanted to lay in bed all day, and didn't even want to watch Sesame Street on TV. Sammy continued to refuse food and was throwing up a lot of the liquids we were putting in her g-tube. Her cough sounded horrible and she seemed like she was in pain. Again we reached out to Dr. C on Friday who told us to go straight back to the ER and request IV fluids. He cautioned us that the doctors cannot treat Samantha like a typical kid. And, that her Leigh's disease means that she needs extra support even during a normal routine childhood illness.
Friday afternoon we headed back to the ER, and THAT attending doctor was surprised that the attending on Wednesday did not admit us right then and there. So, we got a bed in the PICU Friday night and more bloodwork was run. As she had been on antibiotics for several days and still had a fever, they ran a tests for viral illnesses. To be honest I thought that was done on Wednesday and had come back with nothing. On Saturday morning, we found out that she tested positive for RSV. We aren't sure how that could happen as we are very protective when it comes to Samantha and germs. But, I guess you really can't prevent a child from getting sick, no matter how hard you try.
The PICU kept her hydrated through IV fluids. On Friday night we were really concerned when Samantha started desatting while on her vent, so O2 was added. That was the first time Sam has ever needed o2 while on her vent.
Although Samantha still wasn't eating, we kept trying to use her tube to get her formula in her. When she was tolerating her feeds again, we stopped the IV. And, finally on Saturday night her fevers stopped. In addition, we were able to stop the o2 use. On Monday we took her off of her vent for the first time in days. The doctor on Monday felt that if there were no negative events, we could probably go home on Tuesday and continue to get her stronger there (if there was no IV fluids needed anymore, there was no real need for us to be there as we have a lot of things in place (feeds, vents) at home.
Yesterday (Tuesday), she was obviously still feeling better, and we got the official clearance to go home. And here we are. I am happy to report that Samantha ate a pancake this morning. And wanted to "play" for the first time in over a week. She is now relaxing watching Sesame Street.
Sammy still seems a little weaker than her normal self. But that is to be expected considering where she spent the weekend. Val, Sammy and I are all very, VERY happy to be home.
Until next time,
Monica
Monday, October 24, 2011
A day of firsts
Yesterday was a great day! So often on this blog I forget to include things other than boring, dry medical updates. Despite our daily chaos, Val, Sammy and I manage to have a good time. My older sister talked us into meeting her at a pumpkin patch yesterday. We then headed to her house for some good food and pumpkin carving. Samantha loves spending time with her cousins, and she had a great day. She even managed to do a few "Firsts" including pumpkin picking, pumpkin carving, a non-hay hay ride, and a pony ride.
Here are some pictures from our amazing day!
The pony ride! (Very afraid but she hung in there!)
The wagon ride! Apparently the rides don't always include actual hay anymore, which was wonderful. My guess is that trachs and lots of kids/hay in close quarters would not be a good mix. So, Samantha was able to enjoy the ride with her cousins. :)
Picking pumpkins with her cousins, and yes, Sammy lifted her very own pumpkin and still stayed upright!
Always nice to get all three of is in the same picture...
Pumpkin carving at Aunt Shannon's and Uncle Angelo's!
The finished product! To be honest, Sammy's uncle was actually the one that carved it. Neither Val or I have the skills to do such a top-notch job.
A special thanks to my sister and her husband for hosting such a wonderful day!
Until next time,
Monica
Here are some pictures from our amazing day!
The pony ride! (Very afraid but she hung in there!)
The wagon ride! Apparently the rides don't always include actual hay anymore, which was wonderful. My guess is that trachs and lots of kids/hay in close quarters would not be a good mix. So, Samantha was able to enjoy the ride with her cousins. :)
Picking pumpkins with her cousins, and yes, Sammy lifted her very own pumpkin and still stayed upright!
Always nice to get all three of is in the same picture...
Pumpkin carving at Aunt Shannon's and Uncle Angelo's!
The finished product! To be honest, Sammy's uncle was actually the one that carved it. Neither Val or I have the skills to do such a top-notch job.
A special thanks to my sister and her husband for hosting such a wonderful day!
Until next time,
Monica
Sunday, October 16, 2011
MRI results and a few other updates
Samantha had a brain MRI a couple of weeks ago. She did well through the general anesthesia and seemed back to her typical self by the end of the day. MRIs are not my favorite thing to have done. In fact, I hate them. It's hard to read about and see that your child's brain has things going on that aren't quite right. The brain, as we all know, controls everything there is about a person. Personality, health, vision, hearing, swallowing, breathing, living etc and so forth. In addition to knowing that your child's MRI doesn't look like a typical MRI, it is especially hard to know that new MRI looks worse than the old one. So, needless to say, in the weeks prior to and after any MRI, I struggle a bit more than usual.
To give a history of Sam's previous two MRIs---they were done only 4-5 months apart and the 2nd MRI looked worse than the first. It was the first absolute proof we had that this "thing" going on was progressive in nature. When things went horribly wrong this past February, we declined to get an MRI. Actually, at one point I think we agreed but then it didn't work out with scheduling and we didn't think it was important enough to have her sedated yet again for a test that wouldn't change what we were doing at the time. So, this most recent MRI was 14 months after her last one. And, about 7 months after starting EPI-743.
The results were about as good as we could hope for, given the nature of Leigh's disease. The lesions in her brain stem area actually looked smaller and "less bright"-which is a very, very good thing. That is most likely the reason she is no longer on the vent. However, there were new lesions in her basal ganglia area that were not there the last time the pictures were taken. The new lesions probably explain why her right hand is fisted way more than it used to be. (Her right side has always been slightly more impacted than her left, as the left side of her brain is more impacted when looking at her MRIs). But, as it was so long since her last MRI, those lesions may have been worse at some point and also gotten better.
We've been told that lesions can sometimes "come and go" with Leigh's disease. Therefore, it is still unclear how much impact EPI-743 had on that specific thing. However, we've also been told that when children get as sick as Sam did in Feb., it is sometimes possible for them to get better, as she did. But, in general, the child's new "baseline" is not quite as good as it was before. That is absolutely not true in Sam's case. She is doing as well as she did prior to getting really sick in February. And, perhaps that is where EPI comes in? It is too soon to say, but I plan on keeping her on EPI as long as we can, if not forever.
In other news, I think we have decided to at least wait until after flu season before attempting to remove the trach. So, nursing care and suction machines will continue to be in our short-term future.
Our girl has outgrown a 3rd g-tube. Therefore, we have stopped her overnight feeds and replaced them with water for now. If she begins to lose weight, we would absolutely add back in the feeds. For now, she gets 1200 mls of water through the tube each day, in addition to all of her meds. As I have said before, the g-tube will most likely be around for a long time, if not permanently. It is so essential to her hydration (and nutrition if/when she needs it). Not to mention we no longer have to do a sing and a dance (literally) each time we need Sammy to take a medication. Now she helps "push" her meds and has a good time doing it. Long live the g-tube.
I will try to update more when I can. Thanks so much for reading.
Until next time,
Monica
To give a history of Sam's previous two MRIs---they were done only 4-5 months apart and the 2nd MRI looked worse than the first. It was the first absolute proof we had that this "thing" going on was progressive in nature. When things went horribly wrong this past February, we declined to get an MRI. Actually, at one point I think we agreed but then it didn't work out with scheduling and we didn't think it was important enough to have her sedated yet again for a test that wouldn't change what we were doing at the time. So, this most recent MRI was 14 months after her last one. And, about 7 months after starting EPI-743.
The results were about as good as we could hope for, given the nature of Leigh's disease. The lesions in her brain stem area actually looked smaller and "less bright"-which is a very, very good thing. That is most likely the reason she is no longer on the vent. However, there were new lesions in her basal ganglia area that were not there the last time the pictures were taken. The new lesions probably explain why her right hand is fisted way more than it used to be. (Her right side has always been slightly more impacted than her left, as the left side of her brain is more impacted when looking at her MRIs). But, as it was so long since her last MRI, those lesions may have been worse at some point and also gotten better.
We've been told that lesions can sometimes "come and go" with Leigh's disease. Therefore, it is still unclear how much impact EPI-743 had on that specific thing. However, we've also been told that when children get as sick as Sam did in Feb., it is sometimes possible for them to get better, as she did. But, in general, the child's new "baseline" is not quite as good as it was before. That is absolutely not true in Sam's case. She is doing as well as she did prior to getting really sick in February. And, perhaps that is where EPI comes in? It is too soon to say, but I plan on keeping her on EPI as long as we can, if not forever.
In other news, I think we have decided to at least wait until after flu season before attempting to remove the trach. So, nursing care and suction machines will continue to be in our short-term future.
Our girl has outgrown a 3rd g-tube. Therefore, we have stopped her overnight feeds and replaced them with water for now. If she begins to lose weight, we would absolutely add back in the feeds. For now, she gets 1200 mls of water through the tube each day, in addition to all of her meds. As I have said before, the g-tube will most likely be around for a long time, if not permanently. It is so essential to her hydration (and nutrition if/when she needs it). Not to mention we no longer have to do a sing and a dance (literally) each time we need Sammy to take a medication. Now she helps "push" her meds and has a good time doing it. Long live the g-tube.
I will try to update more when I can. Thanks so much for reading.
Until next time,
Monica
Tuesday, September 27, 2011
No news is good news
Obviously, I am a horrible blogger as it has been over two months since my last post. Or, something like that. I am not sure why it's been so long. We always do feel busy, but that is nothing new. I know there are a few of you out there who have expressed an interest and actually do use the blog to get your Samantha updates.
Amazingly, it's all good. Samantha eats by mouth the entire day and only receives her tube feeds at night. (We also provide her hydration through the g-tube by giving her lots of water boluses throughout the day). I expect the g-tube will be around for a long time, and I think we are all ok with that.
Samantha has been off of her vent completely now for over two weeks and all of her numbers continue to look good. She's walking and talking better than ever. Her stomach seems to be moving things appropriately. Her last labs all looked as good as they ever have. So yes, she's doing really well.
Samantha's doing so well, in fact, that there is talk of removing her trach at some point soon. If she doesn't need the vent (and right now she doesn't), and her lungs and airway are fine (as they always have been), there is no reason for her to have a trach. To be honest, removing the trach scares me because at some point we may have to put it back in. However, if there is no need for it at this time, it is an infection risk and should come out. Val and I aren't ready to rush it out just yet, and want to make sure Sam can go a few months without any vent use before we make that decision.
Samantha has an MRI scheduled for this Friday, her first in over a year. I am not looking forward to her being placed under general anesthesia again. She seemed to do well with it the last two times. But she was in the PICU at that time and not moving around much anyway. I'm not sure how it will go to have her discharged the same day. The hospital is taking her case seriously, and I know they will use every precaution necessary to ensure the best possible care for Samantha. I hope the results of the MRI will give us a clearer picture of how much the disease has progressed in her brain (if at all). In addition, perhaps it will provide us some insight on how quickly to remove the trach.
Sam continues to take EPI-743 and as always, we believe it is truly helping her. We also believe her g-tube and all of the hydration/nutrition it has provided her is helping as well.
Samantha continues to be her funny, loving, smart, adorable self. Val and I enjoy having her visit with our families as much as possible and are still loving being in the city with her. The kid loves a good party.
Sammy has come so far since the dark days of February. This time last year I couldn't have imagined what happened in February was going to happen. The last year has been a complete roller coaster of downs, and now ups. We'll take the ups and not try to think too far ahead. One day at a time continues to be our mantra.
Sorry again about the lack of updates. Hopefully, my next post will be much sooner than two months from now.
Until next time,
Monica
Amazingly, it's all good. Samantha eats by mouth the entire day and only receives her tube feeds at night. (We also provide her hydration through the g-tube by giving her lots of water boluses throughout the day). I expect the g-tube will be around for a long time, and I think we are all ok with that.
Samantha has been off of her vent completely now for over two weeks and all of her numbers continue to look good. She's walking and talking better than ever. Her stomach seems to be moving things appropriately. Her last labs all looked as good as they ever have. So yes, she's doing really well.
Samantha's doing so well, in fact, that there is talk of removing her trach at some point soon. If she doesn't need the vent (and right now she doesn't), and her lungs and airway are fine (as they always have been), there is no reason for her to have a trach. To be honest, removing the trach scares me because at some point we may have to put it back in. However, if there is no need for it at this time, it is an infection risk and should come out. Val and I aren't ready to rush it out just yet, and want to make sure Sam can go a few months without any vent use before we make that decision.
Samantha has an MRI scheduled for this Friday, her first in over a year. I am not looking forward to her being placed under general anesthesia again. She seemed to do well with it the last two times. But she was in the PICU at that time and not moving around much anyway. I'm not sure how it will go to have her discharged the same day. The hospital is taking her case seriously, and I know they will use every precaution necessary to ensure the best possible care for Samantha. I hope the results of the MRI will give us a clearer picture of how much the disease has progressed in her brain (if at all). In addition, perhaps it will provide us some insight on how quickly to remove the trach.
Sam continues to take EPI-743 and as always, we believe it is truly helping her. We also believe her g-tube and all of the hydration/nutrition it has provided her is helping as well.
Samantha continues to be her funny, loving, smart, adorable self. Val and I enjoy having her visit with our families as much as possible and are still loving being in the city with her. The kid loves a good party.
Sammy has come so far since the dark days of February. This time last year I couldn't have imagined what happened in February was going to happen. The last year has been a complete roller coaster of downs, and now ups. We'll take the ups and not try to think too far ahead. One day at a time continues to be our mantra.
Sorry again about the lack of updates. Hopefully, my next post will be much sooner than two months from now.
Until next time,
Monica
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