Let's see to give all of our family and friends a quick recap. Hyperbaric is almost done, a very bitter sweet thing, we have made some wonderful friends that I hope will remain in our lives forever. They are amazing there. His swallow therapy is going really well, slow moving but we are making progress. The vital stim I think is really helping him. I am told it will be a long tme coming before he will be able to eat and swallow enough to meet his nutritional needs, so Mark and I are looking into the g-tube. His swallow therapist, Steve Astrofsky, said he didn't think he would need to be intabated as previously mentioned, something we are going to look into.
Alec got his braces for his legs and right hand. His braces are sooo cool they have spiderman all over them, and they were really helping him. I say was because his PT, Ms. Eileen said to have them tweeked a little bit so now we are waiting to get them back, she knows best on how they would benefit Alec, she is wonderful, we are really luck to have such amazing and caring people in our lives.
His speech I think has improved, seems a bit clearer.
Well he is calling me, I'll try to update later!
Bye for now.
Thursday, July 24, 2008
Monday, July 14, 2008
Almost Home
Well we are still in ICU at the momment. We were going to be released today but then there was some blood pressure issues, and the equipment couldn't be delivered to my house today; I want a pulse ox and oxygen on hand "just in case".
A couple of things to vent about, there is this really stupid rule that from 8-9 pm you have to leave the ICU. I mean how do you tell a parent who has a child in the ICU that you have to leave while we change shifts, I mean how rediculous. I brought Alec's wheelchair to his room today and took him for a stroll around the floor to get him out of his jail cell of a room. He was happy to be out for a little bit but very upset when I told him that we weren't going home today. As I strolled through the floor I passed other patients on vents and my heart crumbled. Why, why would God let this happen to these innocent little babies and let criminals roam the streets, I don't understand this.
In any case not to jump around from one thing to another but we did manage to avoid a tracheotomy, I don't remember if I mentioned this before but the PICU Dr. wanted Alec to get one and his HEMOC Dr, Dr. Atlas said he wants to avoid it for now but he will most likely need one in the future. Sorry but I'm not a beliver of that, don't get me wrong I fully agree with Dr. Atlas in this instance except for the future thing. I feel therapy will help him, there is something that will help him I know it. If he was to get the trach he wouldn't be able to talk.
He is so happy these days playing with his cards Pokemon and Star Wars, in the box out of the box, he is so funny and Connect 4. His fine motor skills in his left hand are really good, I'm impressed. We have to work on the right hand though, all in time, we have plenty of it.
He wants to get home and see his friends, I asked him who he wants to play with first and he said all of them, with a smile :0)
He is still tube feeding through the ng, we are avoinding the g-tube for now (surgically placing a feeding tube directly into his stomach) it requires intubation and the last time he was extabated all the drooling started, urrrgh!
Okay lets see what else oh, they started him on robotal, sorry not sure of spelling to help dry up his secreations but I am a little nervous about this drug, it doesn't just dry him up it can thicken up the saliva making it difficult for him to cough up, hmm not too samrt so we'll see I might have to do some mommy tweaking medicines when we get home. We are going to start up his blood pressure med again, its a low dose and it's better to be safe than sorry hence the stupid steriod. Well thats where we are now. Say your prayers and kiss your kids, remember the power of positive thinking is the only way to see the light, tears are okay to shed as long as they are tears of happiness, he is still with us, he can't walk without assitance but someday he WILL, he can't chew and swallow food but someday he WILL, and his speech is slured but someday he'll be writing speeches, his right hand is week but someday he will throwing 90 mph fast ball with it.
Goodnight to all!
A couple of things to vent about, there is this really stupid rule that from 8-9 pm you have to leave the ICU. I mean how do you tell a parent who has a child in the ICU that you have to leave while we change shifts, I mean how rediculous. I brought Alec's wheelchair to his room today and took him for a stroll around the floor to get him out of his jail cell of a room. He was happy to be out for a little bit but very upset when I told him that we weren't going home today. As I strolled through the floor I passed other patients on vents and my heart crumbled. Why, why would God let this happen to these innocent little babies and let criminals roam the streets, I don't understand this.
In any case not to jump around from one thing to another but we did manage to avoid a tracheotomy, I don't remember if I mentioned this before but the PICU Dr. wanted Alec to get one and his HEMOC Dr, Dr. Atlas said he wants to avoid it for now but he will most likely need one in the future. Sorry but I'm not a beliver of that, don't get me wrong I fully agree with Dr. Atlas in this instance except for the future thing. I feel therapy will help him, there is something that will help him I know it. If he was to get the trach he wouldn't be able to talk.
He is so happy these days playing with his cards Pokemon and Star Wars, in the box out of the box, he is so funny and Connect 4. His fine motor skills in his left hand are really good, I'm impressed. We have to work on the right hand though, all in time, we have plenty of it.
He wants to get home and see his friends, I asked him who he wants to play with first and he said all of them, with a smile :0)
He is still tube feeding through the ng, we are avoinding the g-tube for now (surgically placing a feeding tube directly into his stomach) it requires intubation and the last time he was extabated all the drooling started, urrrgh!
Okay lets see what else oh, they started him on robotal, sorry not sure of spelling to help dry up his secreations but I am a little nervous about this drug, it doesn't just dry him up it can thicken up the saliva making it difficult for him to cough up, hmm not too samrt so we'll see I might have to do some mommy tweaking medicines when we get home. We are going to start up his blood pressure med again, its a low dose and it's better to be safe than sorry hence the stupid steriod. Well thats where we are now. Say your prayers and kiss your kids, remember the power of positive thinking is the only way to see the light, tears are okay to shed as long as they are tears of happiness, he is still with us, he can't walk without assitance but someday he WILL, he can't chew and swallow food but someday he WILL, and his speech is slured but someday he'll be writing speeches, his right hand is week but someday he will throwing 90 mph fast ball with it.
Goodnight to all!
Tuesday, July 8, 2008
ICU
Well I felt like a ping pong ball yesterday, we were moved from Med 3 to our HEMOC floor on med 4, only to be moved 3 hours later to Med 2, ICU. Alec had some awake periods but not speaking, he is also unresponsive to neuro checks, he doesn't squeeze your hands, I mean he knows these tests and would do the in his sleep.
He needs an MRI but there is major concern about sedation with his breathng and lethargy.
He was given a small dose of decadrone the "evil" drug, last night, urrgh! But if he needs it, he needs it. I am not sure what the plan is for today, ICU Dr.'s want an MRI which I think is really necessary, something is going on. He had an chest x-ray, there was fear of a lung collapse but all looked okay but concern he is not taking in enough oxygen. I really didn't want the chest x-ray, As a parent to keep subjecting him to radiation with all he has gone through, I can't even tell you how much I cringe and my heart crumbles and aches and stomach twist during every ctscan and xray, I mean this is my baby, my perfect little angel I carried for 9 months, my little boy who has done nothing wrong except be a child, an amazing one at that! He takes on everything thrown at him and doesn't resist one bit. It's not fair, it's just not fair!!
His HEMOC team thinks he just needs the steroids, but why?? How long can he go on with the steroids for. Endocin checked his cortisol, I was so hoping it was that and it was fine. Neuro tapped his shunt, but feel its not related, so what is it, whats going on?
He was also scoped by ENT and they saw some inflamation in the back of the throat, but the decadrone would help that. Also he is still on ng tube feeds, but there is some g- tube talk now, it would help his passage way and think that is smart to consider. Even though he is still seeing a swallow thereapist who knows how long it will take.
I'll update later, hopefully with some answers.
Pray hard,
Amy
He needs an MRI but there is major concern about sedation with his breathng and lethargy.
He was given a small dose of decadrone the "evil" drug, last night, urrgh! But if he needs it, he needs it. I am not sure what the plan is for today, ICU Dr.'s want an MRI which I think is really necessary, something is going on. He had an chest x-ray, there was fear of a lung collapse but all looked okay but concern he is not taking in enough oxygen. I really didn't want the chest x-ray, As a parent to keep subjecting him to radiation with all he has gone through, I can't even tell you how much I cringe and my heart crumbles and aches and stomach twist during every ctscan and xray, I mean this is my baby, my perfect little angel I carried for 9 months, my little boy who has done nothing wrong except be a child, an amazing one at that! He takes on everything thrown at him and doesn't resist one bit. It's not fair, it's just not fair!!
His HEMOC team thinks he just needs the steroids, but why?? How long can he go on with the steroids for. Endocin checked his cortisol, I was so hoping it was that and it was fine. Neuro tapped his shunt, but feel its not related, so what is it, whats going on?
He was also scoped by ENT and they saw some inflamation in the back of the throat, but the decadrone would help that. Also he is still on ng tube feeds, but there is some g- tube talk now, it would help his passage way and think that is smart to consider. Even though he is still seeing a swallow thereapist who knows how long it will take.
I'll update later, hopefully with some answers.
Pray hard,
Amy
Sunday, July 6, 2008
Possibly Home Bound
Well after a rough night, concerns with Alec retaining alot of fluid I contacted the fellow on call and asked for some tests to be run to look at his kidney functions and he was going to order a lasik, it will make him get rid of the excess fluid and to heplock him, take him off iv fluids for a bit see if that helps with the swelling, retaining fluid.
ENT was in this morning to see him, good news all looks okay from their point of view, s02 is good in the 90's.
Oh, and he did get sick last night so they stopped his feeds, strange. Only happened once, but it happened and Mark said quite alot.
He will be start zantac today for his belly. Mark just phoned me about his creatnine and it is low, .29 and thats down from .32 on June 22nd. We have tyo wait and see what the HEMOC team says about it.
I meet with a urologist this week which is good so we can see whats going on.
Well gotta run, heading up to the hospital.
ENT was in this morning to see him, good news all looks okay from their point of view, s02 is good in the 90's.
Oh, and he did get sick last night so they stopped his feeds, strange. Only happened once, but it happened and Mark said quite alot.
He will be start zantac today for his belly. Mark just phoned me about his creatnine and it is low, .29 and thats down from .32 on June 22nd. We have tyo wait and see what the HEMOC team says about it.
I meet with a urologist this week which is good so we can see whats going on.
Well gotta run, heading up to the hospital.
Saturday, July 5, 2008
Another Holiday Spent at LIJ
Well Alec is doing better, well with the fevers anyway. His blood pressure has been great lately, and I stopped his blood pressure meds when I got word that the MRI showed nothing touch the brain stem.
Also, we are off of the "evil" decadrone.
His breathing has improved, he is not making that sighing noise anymore, he is still sleeping alot though. I think it is coupled with a few factors, first- he is off of the decadrone so he is out of that insomnia state of mind, plus- he is a six year old boy presented with a fever, so something viral going on. And also, he's on vanco and needs to be premedicated wih benedryl and tylonol. So this is the issue, no fevers, but is it because he's getting tylonol every 8 hours, hmm. And bennedryl knocks him out to begin with and now through tylonol and sickness in the game, well there ya go.
ENT was in to see him, Mark was there and I guess there was some mention of apnea?? He was scoped but the ng tube prevented a complete diagnosis. Then some mention of puting him back on decadrone- NOOOOOOOO!
Urghhh, it's not gonna happen. A sleep study needs to be done to rule out some of these findings. I also want to meet with his ENT in Pt Jefferson also to get his input.
Alec had a ct scan of the brain and abdomen done yesterday as well. The ct of the brain looked great, even better than the previous one, they keep getting better and better, thank you HBOT :) And the abdominal scan looked fine.
I met with another opthomologist this past week also and she concurs that Alec is legally blind. He has optic atrophy, he only see's light after about 15 feet. I wish I could see what he see's because sometimes I am surprised at what he see's after his dx.
He still puts his head down alot, I wish he would lift it more, all in time. He started swallow therapy, and the vitastim to help him with sensation. I really hope this helps him.
Not this coming week but the following he will start to get the vitastim therapy on his lips to help with his drooling, it will teach him to keep his mouth closed more.
Well I must leave you now, Mark just called and has me very concerned, I have to call Med 4. Be in touch later.
Amy
Also, we are off of the "evil" decadrone.
His breathing has improved, he is not making that sighing noise anymore, he is still sleeping alot though. I think it is coupled with a few factors, first- he is off of the decadrone so he is out of that insomnia state of mind, plus- he is a six year old boy presented with a fever, so something viral going on. And also, he's on vanco and needs to be premedicated wih benedryl and tylonol. So this is the issue, no fevers, but is it because he's getting tylonol every 8 hours, hmm. And bennedryl knocks him out to begin with and now through tylonol and sickness in the game, well there ya go.
ENT was in to see him, Mark was there and I guess there was some mention of apnea?? He was scoped but the ng tube prevented a complete diagnosis. Then some mention of puting him back on decadrone- NOOOOOOOO!
Urghhh, it's not gonna happen. A sleep study needs to be done to rule out some of these findings. I also want to meet with his ENT in Pt Jefferson also to get his input.
Alec had a ct scan of the brain and abdomen done yesterday as well. The ct of the brain looked great, even better than the previous one, they keep getting better and better, thank you HBOT :) And the abdominal scan looked fine.
I met with another opthomologist this past week also and she concurs that Alec is legally blind. He has optic atrophy, he only see's light after about 15 feet. I wish I could see what he see's because sometimes I am surprised at what he see's after his dx.
He still puts his head down alot, I wish he would lift it more, all in time. He started swallow therapy, and the vitastim to help him with sensation. I really hope this helps him.
Not this coming week but the following he will start to get the vitastim therapy on his lips to help with his drooling, it will teach him to keep his mouth closed more.
Well I must leave you now, Mark just called and has me very concerned, I have to call Med 4. Be in touch later.
Amy
Tuesday, July 1, 2008
WOW!! Time flies, huh. I have been wanting to update this blog for weeks now. Great news, the brain swelling has decreased and there is nothing touching the brainsetem. The scare tissue from radiation has decreased in size and pulled away from the brain stem. What does this mean you ask, it's working whoo, hoo!!!
Eating is still another story we are seeing a swallow therapist to reteach Alec how to chew and swallow so he continues to get fed though his ng tube and helps me puree his foods.
Ughh, another story though, it likes to clog :( but the nurses gave me a little secret, gingerale, and guess what it works!! Thanks girls. Those HEMOC girls, so smart.
I know this is short and sweet but I have to run out, what else is new though. I have uploaded some new photos though.
Eating is still another story we are seeing a swallow therapist to reteach Alec how to chew and swallow so he continues to get fed though his ng tube and helps me puree his foods.
Ughh, another story though, it likes to clog :( but the nurses gave me a little secret, gingerale, and guess what it works!! Thanks girls. Those HEMOC girls, so smart.
I know this is short and sweet but I have to run out, what else is new though. I have uploaded some new photos though.
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