So..minus the slight bronchitis set back for me since we've got home...I've been so excited with the progress we made in Denver.
Wednesday they informed us that he had no seizures while we were in the hospital...of course not why would the kid do something that convenient! :) However, they did see more discharges but they were rare. His EEG is still considered abnormal though.
As far as the discharges go. Chelsea explained them in a way like his brain turns on a switch to have a seizure and then quickly shuts it off, therefore not having one, but the trigger is still there. She said this is very promising because it means that his meds are keeping him under control.
She said that she will have to tweek them as he gets bigger and needs more, but her goal is for him to be seizure free for 2 years and then wean him off his meds. However, that means no seizures, not even 1 seizure. But we will get there. I have hope now.
She kept saying that she was so excited and couldn't believe how well he was doing! So she decided that we didn't have to be back to Denver in 3 weeks, but instead 3 months! MONTHS!!! Can you believe it?!?!
Instead in 3 weeks we will had to Omaha, to get in 2 more treatments with our favorite speech therapist, Jen. I'm hoping we are close to no NG by then. He's taking 3 oz orally 3 times a day. I have to get him worked up to 4 to get him off his bed time feeding, but I'm hoping that he will continue to do well and Monday we will start 4 oz with meals and at bedtime. I just need him to suck through a straw, but hey...if that's the worse thing he's not doing...FINE BY ME!
The big boys are bummed that they don't get to go out to Denver with us, but they will live. They were happy to see us home!
Saturday, July 30, 2011
Tuesday, July 26, 2011
Lighter
If you could see my face today, you'd see the large smile that is on my face.
Last night was another long night, but it is more so because I wasn't feeling well and I was crammed on a little bench type bed with my ginormous husband. Chris slept well.
The epileptologist rounded on Chris this a.m. after going over his EEG and they reported that he had been seizure free, but had what they called discharges from the back of his brain. YAY...we got location! :)
These discharges...if i understand right..are the brains attempt to trigger a seizure, but it doesn't get to a full blown seizure. This made me happy and the epilepsy team happy, because he is still having triggers but it's not getting to a seizure. They said that this is most likely because his meds a right where they need to be.
They have been very happy with his progress and at first we were going to have to be back here in 3 weeks, but they changed it to 3 months! :)
They said that his control is good right now and they are very happy with his progress. They will keep him until tomorrow to see if he has any other activity.
Last night was another long night, but it is more so because I wasn't feeling well and I was crammed on a little bench type bed with my ginormous husband. Chris slept well.
The epileptologist rounded on Chris this a.m. after going over his EEG and they reported that he had been seizure free, but had what they called discharges from the back of his brain. YAY...we got location! :)
These discharges...if i understand right..are the brains attempt to trigger a seizure, but it doesn't get to a full blown seizure. This made me happy and the epilepsy team happy, because he is still having triggers but it's not getting to a seizure. They said that this is most likely because his meds a right where they need to be.
They have been very happy with his progress and at first we were going to have to be back here in 3 weeks, but they changed it to 3 months! :)
They said that his control is good right now and they are very happy with his progress. They will keep him until tomorrow to see if he has any other activity.
Monday, July 25, 2011
End to a long day...
We are at the end of Day 1. Man it's a long day sitting here staring at each other, watching a 19 month old bounch off the walls. He's walking around with wires sticking off his head and a back pack on. They have a black thing around the wires to keep them contained so at times he looks like a little sumo wrestler going to school!
We don't have much back yet. They got his lab drawn...if I didn't say that earlier...and so we will just wait to see what they say in the a.m. Supposedly they will give us a little synopsis as to where we are at this point tomorrow a.m.
I'm not praying at this point to not have any seizures. I'm praying for answers. Although no seizures would be a fantastic bonus...I have to be realistic.
We got an amazing surprise today from Amanda that brought tears to my eyes. It was a little message she submitted from the hospital's website. Chris liked the lion on it and it was great to hear words from back home. One thing about our stay in Omaha was friends and family could come visit us. In Denver, all we have is Amy...who's swamped and Lisa in Cheyenne. Needless to say, the quick note was such a pick me up in this tiny lonely room!.
There is another family here from Hastings, some where in this hospital. I wish I could hunt em down!
We don't have much back yet. They got his lab drawn...if I didn't say that earlier...and so we will just wait to see what they say in the a.m. Supposedly they will give us a little synopsis as to where we are at this point tomorrow a.m.
I'm not praying at this point to not have any seizures. I'm praying for answers. Although no seizures would be a fantastic bonus...I have to be realistic.
We got an amazing surprise today from Amanda that brought tears to my eyes. It was a little message she submitted from the hospital's website. Chris liked the lion on it and it was great to hear words from back home. One thing about our stay in Omaha was friends and family could come visit us. In Denver, all we have is Amy...who's swamped and Lisa in Cheyenne. Needless to say, the quick note was such a pick me up in this tiny lonely room!.
There is another family here from Hastings, some where in this hospital. I wish I could hunt em down!
Denver Check In
We got checked in this morning bright and early! We were here by 715 and they had us up to our room shortly after.
Chelsea came and met with us again and visited about his history and when I said that we have been abscence seizure free since the end of June...mind you they are easy to miss if you are running around taking care of a family, but he doesn't pause anymore...she lit up! She even cheered for him when I said that he started walking 2 weeks after we adjusted his meds! :)
He's now hooked up to the EEG machine and it was horrible getting hooked up. HE doesn't like the air they have to blow on him to dry the paste. Plus being held down is no fun.
They were originally going to take him off his meds, but Chelsea said this morning that they are leary to do that where he has such good control now, that if they take him off, it could be months before they get it back. She then asked how long we were prepared to stay...ugh! I hate that question! So we shall see.
I'm so glad we came here. THey have a tech team watching his EEG as well as the epilepsy team and we will be updated every morning with what's going on.
Not much more at this point. I will update as I can. Just pray they find what is goin on! It will be so much easier to treat him then.
Chelsea came and met with us again and visited about his history and when I said that we have been abscence seizure free since the end of June...mind you they are easy to miss if you are running around taking care of a family, but he doesn't pause anymore...she lit up! She even cheered for him when I said that he started walking 2 weeks after we adjusted his meds! :)
He's now hooked up to the EEG machine and it was horrible getting hooked up. HE doesn't like the air they have to blow on him to dry the paste. Plus being held down is no fun.
They were originally going to take him off his meds, but Chelsea said this morning that they are leary to do that where he has such good control now, that if they take him off, it could be months before they get it back. She then asked how long we were prepared to stay...ugh! I hate that question! So we shall see.
I'm so glad we came here. THey have a tech team watching his EEG as well as the epilepsy team and we will be updated every morning with what's going on.
Not much more at this point. I will update as I can. Just pray they find what is goin on! It will be so much easier to treat him then.
Thursday, July 21, 2011
Get Ready...Set...HOLD ON!
Wow! I'm getting ready to put my jet pack on to prepare for this next week!
I'm working tomorrow then we start the craziness. We head to Omaha Saturday then we are off to Denver on Sunday for Chris' admission to the Children's Hospital in Denver.
I have talked with a couple of parents and they have also been impressed with the hospital and they do lots of things that we need to bring back to this area. The one that touched base this week was that the welcome coordinator called and set up our hotel for us for Sunday night. Then she gave us some helpful tips along the way.
Chris will be hooked up to an EEG monitor for 2-3 days. They will back off his meds to attempt to trigger a seizure...scary. He will also have his third round of genetic testing at this time.
The big boys are gonna stay with Grandma K. It's just a lot to process in the next few days. Please keep Chris in your prayers. We trully hope that they can find something while we are out there.
I'm working tomorrow then we start the craziness. We head to Omaha Saturday then we are off to Denver on Sunday for Chris' admission to the Children's Hospital in Denver.
I have talked with a couple of parents and they have also been impressed with the hospital and they do lots of things that we need to bring back to this area. The one that touched base this week was that the welcome coordinator called and set up our hotel for us for Sunday night. Then she gave us some helpful tips along the way.
Chris will be hooked up to an EEG monitor for 2-3 days. They will back off his meds to attempt to trigger a seizure...scary. He will also have his third round of genetic testing at this time.
The big boys are gonna stay with Grandma K. It's just a lot to process in the next few days. Please keep Chris in your prayers. We trully hope that they can find something while we are out there.
Saturday, July 16, 2011
Time Flies When You're Having Fun
Wow have the weeks flown! We are looking at school in a little over a month and 2 trips to Denver in between!
We had our follow ups in late June for Mr. Christopher. Dr. Thomas (Pulmonology) and Dr. Goebel (ENT) were very happy with him. They both accused him of being a different kid. I agreed. Dr. Goebel couldn't believe that his sleeping at night was so dramatically affected. You now have to walk clear in to the room to see if he is sleeping or not.
Our swallow study with our favorite Speech lady went well, but not as well as I had hoped. Later Jason and I had discussed that we both thought that he would pass and they would just yank his tube. We were both wrong.
He is back to his baseline - honey thick liquids - as he was in January, but since Jen knows him so well, she was afraid to pull the tube because he fatigues so quickly when he eats so we are slowly introducing fluids back to him in staggering.
We haven't gotten very far, as the first couple weeks he got a cold and it settled in to his chest, so Jen backed things down, but we are doing better. And if Miss Lily (his cousin) would leave his tube alone, we wouldn't have to put it back in! I'm kidding, but she did pull it out one time because she tackled him for a cookie...atta girl!! :)
His walking is getting better by the day. He's now trying to run some days and takes about 3 steps and he's down, but he tries. He's started to do therapy at home with the special ed instructor and if Matt would leave him be during it, things would go well.
He's still very non-verbal other than up so we do quite a bit of sign language - his favorite is eat!
We head to Denver in a week for his EMU (epilepsy monitoring unit) stay. He will be hooked up to an EEG for 3 days and they will reduce his meds and stress him to see if they can capture a seizure. I hope they find something or can tell us something. They will also be doing some more genetic testing.
So before I know it, we will be shopping for Matt's first day of Kindergarten! Yikes!!!
We had our follow ups in late June for Mr. Christopher. Dr. Thomas (Pulmonology) and Dr. Goebel (ENT) were very happy with him. They both accused him of being a different kid. I agreed. Dr. Goebel couldn't believe that his sleeping at night was so dramatically affected. You now have to walk clear in to the room to see if he is sleeping or not.
Our swallow study with our favorite Speech lady went well, but not as well as I had hoped. Later Jason and I had discussed that we both thought that he would pass and they would just yank his tube. We were both wrong.
He is back to his baseline - honey thick liquids - as he was in January, but since Jen knows him so well, she was afraid to pull the tube because he fatigues so quickly when he eats so we are slowly introducing fluids back to him in staggering.
We haven't gotten very far, as the first couple weeks he got a cold and it settled in to his chest, so Jen backed things down, but we are doing better. And if Miss Lily (his cousin) would leave his tube alone, we wouldn't have to put it back in! I'm kidding, but she did pull it out one time because she tackled him for a cookie...atta girl!! :)
His walking is getting better by the day. He's now trying to run some days and takes about 3 steps and he's down, but he tries. He's started to do therapy at home with the special ed instructor and if Matt would leave him be during it, things would go well.
He's still very non-verbal other than up so we do quite a bit of sign language - his favorite is eat!
We head to Denver in a week for his EMU (epilepsy monitoring unit) stay. He will be hooked up to an EEG for 3 days and they will reduce his meds and stress him to see if they can capture a seizure. I hope they find something or can tell us something. They will also be doing some more genetic testing.
So before I know it, we will be shopping for Matt's first day of Kindergarten! Yikes!!!
Parable of Motherhood
When you walk in to Bergan Mercy Hospital in Omaha, there is this beautiful piano that automatically plays music and then there is this little passage that is with it. It reminds me of my Grandmother's and mother and even my journey....I wanted to share it with you.
Parable of Motherhood
ByTemple Bailey
The young mother set her foot on the path of life. "Is the way long?" she asked. And her guide said, "Yes, and the way is hard. And you will be old before you reach the end of it. But the end will be better than the beginning." But the young mother was happy and she would not believe that anything could be better than those years. So she played with her children and gathered flowers for them along the way and bathed them in the clear streams; and the sun shone on them and life was good, and the young mother cried, "Nothing will never be lovelier than this."
Then night came, and storm, and the path was dark and the children shook with fear and cold, and the mother drew them close and covered them with her mantle and the children said, "Oh Mother, we are not afraid, for you are near, and no harm can come," and the mother said, "This is better than the brightness of day, for I have taught my children courage."
And the morning came, and there was a hill ahead and the children climbed and grew weary, and the mother was weary, but at all times she said to the children, "A little patience and we are there." So the children climbed and when they reached the top, they said, "We could not have done it without you, Mother." And the mother, when she lay down that night, looked up at the stars and said, "This is a better day than the last, for my children have learned fortitude in the face of hardness. Yesterday I gave them courage, today I have given then strength."
And with the next day came strange clouds which darkened the earth, clouds of war and hate and evil--and the children groped and stumbled, and the mother said, "Look up. Lift your eyes to the light." And the children looked and saw above the clouds an Everlasting Glory, and it guided them and brought them beyond the darkness. And that night the mother said, "This is the best day of all for I have shown my children God."
And the days went on, and the weeks and the months and the years, and the mother grew old, and she was little and bent. And her children were tall and strong and walked with courage. And when the way was rough they lifted her, for she was as light as a feather; and at last they came to a hill, and beyond the hill they could see a shining road and golden gates flung wide. And the mother said, "I have reached the end of my journey. And now I know that the end is better than the beginning, for my children can walk alone and their children after them." And the children said, "You will always walk with us, Mother, even when you have gone through the gates."
And they stood and watched her as she went on alone, and the gates closed after her. And they said, "We cannot see her, but she is with us still. A mother like ours is more than a memory. She is a Living Presence."
Parable of Motherhood
ByTemple Bailey
The young mother set her foot on the path of life. "Is the way long?" she asked. And her guide said, "Yes, and the way is hard. And you will be old before you reach the end of it. But the end will be better than the beginning." But the young mother was happy and she would not believe that anything could be better than those years. So she played with her children and gathered flowers for them along the way and bathed them in the clear streams; and the sun shone on them and life was good, and the young mother cried, "Nothing will never be lovelier than this."
Then night came, and storm, and the path was dark and the children shook with fear and cold, and the mother drew them close and covered them with her mantle and the children said, "Oh Mother, we are not afraid, for you are near, and no harm can come," and the mother said, "This is better than the brightness of day, for I have taught my children courage."
And the morning came, and there was a hill ahead and the children climbed and grew weary, and the mother was weary, but at all times she said to the children, "A little patience and we are there." So the children climbed and when they reached the top, they said, "We could not have done it without you, Mother." And the mother, when she lay down that night, looked up at the stars and said, "This is a better day than the last, for my children have learned fortitude in the face of hardness. Yesterday I gave them courage, today I have given then strength."
And with the next day came strange clouds which darkened the earth, clouds of war and hate and evil--and the children groped and stumbled, and the mother said, "Look up. Lift your eyes to the light." And the children looked and saw above the clouds an Everlasting Glory, and it guided them and brought them beyond the darkness. And that night the mother said, "This is the best day of all for I have shown my children God."
And the days went on, and the weeks and the months and the years, and the mother grew old, and she was little and bent. And her children were tall and strong and walked with courage. And when the way was rough they lifted her, for she was as light as a feather; and at last they came to a hill, and beyond the hill they could see a shining road and golden gates flung wide. And the mother said, "I have reached the end of my journey. And now I know that the end is better than the beginning, for my children can walk alone and their children after them." And the children said, "You will always walk with us, Mother, even when you have gone through the gates."
And they stood and watched her as she went on alone, and the gates closed after her. And they said, "We cannot see her, but she is with us still. A mother like ours is more than a memory. She is a Living Presence."
Thursday, June 16, 2011
But Mom!
The boys went to the pool today with one of the girls that babysit for me. After I dropped her off, Matthew was arguing with me as to whether or not he could go in to the grocery store by himself and get 5 things. I told him no because as most of those that know Matthew...it takes him 15 minutes to put his shoes on...and that's with me tying them!!
I told him that I would go in with him and he kept arguing. So I said...Matthew if you keep arguing with me you won't get to go in the grocery store.
His reply...If you'd let me go in the grocery store by myself we wouldn't be.
He is way to wise for his age!! :)
I told him that I would go in with him and he kept arguing. So I said...Matthew if you keep arguing with me you won't get to go in the grocery store.
His reply...If you'd let me go in the grocery store by myself we wouldn't be.
He is way to wise for his age!! :)
Wednesday, June 15, 2011
And He's ...WALKING!!!!
I am writing this as I sit in the kitchen and watch Christopher attempt to walk across the kitchen holding a wooden spoon in one hand and a giant potato in his mouth!!! He doesn't get but maybe about 4 steps, but when he's not working on becoming the next Iron Chef or Lay's potato chip man...he can make it 4 or 5 feet at a time!!!
Not very far, but we are getting there! Anytime he wants to get some place far he has to crawl, but he'll catch on...he's still working on his balance. The other funny is that any time he stands up...he says...up! One of his 2 words! :)
I wondered if this wouldn't happen after he got his seizure med increased. I can't wait to get to omaha for PT tomorrow to show Stacy what we are doing! :) The boys keep running to me yelling...He's walking...He's walking and with a smile I get to say...get used to it boys...it's gonna keep happening! :) We have a ways to go...but hey...it's steps! :)
I talked to Denver again on Monday, actually talked with our provider out there. It's been the 6th time I've talked with them...SUPER impressed. They said that he can't do his VitalStim therapy which is the therapy he was doing for his swallowing 3 days/week in Omaha. Slightly disappointed, but we will see what his swallow study says next week and then go from there.
I asked about his EEG that was done in March and they said that although it was abnormal, it was only MILDLY abnormal...I'll take it! She said that it was more indicative of a child that was delayed. It gives me hope that we will grow out of this. Hopefully we hear back from genetics soon and hear about our sotos syndrome results.
But with that, I asked why we see so many outwardly signs then. Chelsea went on to explain that it takes months, sometimes years for people to catch a seizure on an EEG. (Not hoping for the years!) She said if he's not having seizures...we aren't going to catch em. So when we go back in July they will most likely stop his medication or decrease it to see if they can capture a seizure.
They will do some lab when he's out there and I'm not looking forward to the poke. Next week we head to Omaha for our swallow study. I am very hopeful that we will get our NG out, but as I told my aunt today...I will be heartbroken if we don't. I will get over it, but he's wanting a cup so bad!!!
I have added a link below, as well as on my FB page the link to our epilepsy walk page and hope that you can make some donation for the LIFE organization. Thanks SO much in advance.
https://sites.google.com/site/moosetracks4epilepsy/
Not very far, but we are getting there! Anytime he wants to get some place far he has to crawl, but he'll catch on...he's still working on his balance. The other funny is that any time he stands up...he says...up! One of his 2 words! :)
I wondered if this wouldn't happen after he got his seizure med increased. I can't wait to get to omaha for PT tomorrow to show Stacy what we are doing! :) The boys keep running to me yelling...He's walking...He's walking and with a smile I get to say...get used to it boys...it's gonna keep happening! :) We have a ways to go...but hey...it's steps! :)
I talked to Denver again on Monday, actually talked with our provider out there. It's been the 6th time I've talked with them...SUPER impressed. They said that he can't do his VitalStim therapy which is the therapy he was doing for his swallowing 3 days/week in Omaha. Slightly disappointed, but we will see what his swallow study says next week and then go from there.
I asked about his EEG that was done in March and they said that although it was abnormal, it was only MILDLY abnormal...I'll take it! She said that it was more indicative of a child that was delayed. It gives me hope that we will grow out of this. Hopefully we hear back from genetics soon and hear about our sotos syndrome results.
But with that, I asked why we see so many outwardly signs then. Chelsea went on to explain that it takes months, sometimes years for people to catch a seizure on an EEG. (Not hoping for the years!) She said if he's not having seizures...we aren't going to catch em. So when we go back in July they will most likely stop his medication or decrease it to see if they can capture a seizure.
They will do some lab when he's out there and I'm not looking forward to the poke. Next week we head to Omaha for our swallow study. I am very hopeful that we will get our NG out, but as I told my aunt today...I will be heartbroken if we don't. I will get over it, but he's wanting a cup so bad!!!
I have added a link below, as well as on my FB page the link to our epilepsy walk page and hope that you can make some donation for the LIFE organization. Thanks SO much in advance.
https://sites.google.com/site/moosetracks4epilepsy/
Friday, June 10, 2011
General Delay
Since Denver, there has been one thing that has stuck with me...general delay. It's been hard for me to accept this and this is a very selfish mom moment, but as I watch my 9 month old neice learn to walk...my heart breaks.
We errupt in joyous outbursts when he takes a couple of steps. At any point he can just take off walking...but he doesn't. They have always said that one day he WILL walk, we just don't know when. I'm just not a very patient person. His PT says that his coordination will come when his seizures are under control.
I'm learning to dislike epilepsy a lot. I know that there are thousands of children that are worse off than Chris...even in the realm of epilepsy, but this mother just wants her son to be 'normal' and walking and doing everything he should be doing at almost 18 months. It's hard because I am helpless. I can't do anything for him, but snuggle him and love him and provide the best care for him.
So, technically, I'm not doing nothing and Chris is making improvements, but it's still hard to swallow. My evening prayers will just continue to pray for a cure.
We errupt in joyous outbursts when he takes a couple of steps. At any point he can just take off walking...but he doesn't. They have always said that one day he WILL walk, we just don't know when. I'm just not a very patient person. His PT says that his coordination will come when his seizures are under control.
I'm learning to dislike epilepsy a lot. I know that there are thousands of children that are worse off than Chris...even in the realm of epilepsy, but this mother just wants her son to be 'normal' and walking and doing everything he should be doing at almost 18 months. It's hard because I am helpless. I can't do anything for him, but snuggle him and love him and provide the best care for him.
So, technically, I'm not doing nothing and Chris is making improvements, but it's still hard to swallow. My evening prayers will just continue to pray for a cure.
Wednesday, June 08, 2011
Epilepsy Walk
I forgot to add on my last post that the Nebraska Epilepsy Walk is in August in Omaha and we will be participating. If anyone would like to join our team or make a donation to our team for epilepsy research, let me know.
I will be posting a donation link later. Any amount is greatly appreciated. Our team name is Moose Tracks 4 Epilepsy: Crusading for a Cure for Chris.
We'd love any walkers to join us!!! :) Just email me: jkoehlmoos@gmail.com
Tuesday, June 07, 2011
Denver
Wow, I can't believe that it's been since surgery since I last posted. Okay, I can because it's been crazy busy. I've been working lots.
Our 2 weeks home since Omaha have been busy and filled with some excitement. Chris has taken to the seizure meds well and after the first week started to take a few steps independently. Not many and when he doesn't want to do it he goes completely limp. The other night he was ping ponging back and forth in between the couch and rocking chair. SUPER excited. I can't wait for his PT to see him on the 22nd.
His NG feedings continue to go well. He leaves it alone and we've only had to put it back in once since we've been home...SUCCESS! :) We hope to get that out on June 21. We shall see. Some days I have hope and other days I don't. We did cheat a little bit the other night and I let him wet his finger and put it in his mouth. His eyes pretty much rolled in the back of his head with having something wet in his mouth again.
So Denver...I hadn't slept much in preparation for it and had just as much anxiety not being around the big boys. The last time I left them for a couple days it was 8 days later before I was home with them again.
We left on Sunday and made it out okay. Thank goodness for our GPS and my co-worker Stefani or we would have been clueless. Our appointment was at 12:45 and around 11 a.m. I started having anxiety as to whether they gave me the appointment in my time or theirs. They said when we made the appointment that if we were 15 min late, we would have to reschedule. Jason didn't help...he fed in to my psychosis by saying...you're right...it probably was our time and as I'm getting ready...i was having chest pain at the thought...however, we arrived on time! :)
We met with Kristie Stilley, a PA and at first I was worried that we were only seeing a PA, but she was AMAZING. Now, I don't mean ONLY a PA, but my thought was...I don't want to drive 8 hours to have to come back to see the other guy. Anyway, we went over the same questions we have been over 1000 times and new ones that I never thought to notice, like if one side was affected more or not.
I learned he is having 2 types of seizures...drop seizures, where he loses his muscle tone and falls (the kind that triggered all of this) and the absence seizures where he just stares blankly into space for a few seconds. The good news is she said the drop seizures usually do not indicate any type of brain injury...YAY good news.
Then she asked about his history and family history and was looking confused the whole time and I was annoyed at first until she explained that there is no reason in his history for him to be having seizures. He didn't have a horribly traumatic birth (maybe for me) and there is no HUGE family history of seizures, just my aunt. So she said the FIRST step was that we needed to find out WHY he was having seizures. Something we hadn't heard yet. If we find out why and what kind they will know the proper way to treat him.
Then she talked about doing a 3 day EEG where they will admit him to the hospital and then monitor him with an EEG "hoping" to catch a seizure. This statement alone made me feel better for the fact that they can be missed. He will do good for days and days and then will have days where he has lots. I think in Omaha, we were having good days, hence the normal EEG. She was going to try to arrange to do it while we were out there, but couldn't, so we have to go back at the end of July. The good thing about doing it in Denver is that the epileptologist will be close by also watching it...or whatever they do.
She also upped his medications because I had said he did amazing the first week on the new med and then has been going backwards a little. So she upped it and hoping to find more of a dose that works for him, since his dose now is pretty small. She also prescribed an emergency med, which she was shocked we hadn't had yet. This made me feel better. I know we hadn't had a BAD seizure, but like she said...doesn't mean he won't. The funny part is that it is given rectally and after they gave us instruction on how to use it and we walked out Jason goes...That drug goes where?
She then said that they want to talk to our geneticist about some seizure specific genetic testing that may tell us a lot if we don't have other answers from the testing we've already done. I didn't even know this was an option.
I gave her his MRI and his first EEG, but she was unable to open them up so she said that she would call this week or next with what she found out. Then we talked about not being able to get the one from Children's and she said she would work on it! :)
The last thing she shared was to call her if he had any seizures out of his norm or if anything changed that I was concerned about. Something else we hadn't heard yet.
By the time we were done with our 2 hour appointment, we had seen Kristie, another neurologist and they had consulted with the epileptologist. For the first time since his diagnosis, I feel like we are going somewhere. Before I felt like it was...here take this pill...here take more of this pill...here take this new pill. We weren't getting anywhere.
We will ravel to Denver the end of July for the EEG and I was nervous that he would have to be hooked up for 3 days because when we did the 24 hour one, he had to stay in his crib basically. Thankfully however, he will be able to move about a room in Denver.
So we headed to Omaha today to get the big boys. Jason wanted to take them to the zoo. Plus Andrew turns 8 on Saturday and we are SO happy we get to spend the day with him. We celebrated last weekend, but it's still not the same. We will head back home Thursday and get stuff done around the house before we head back to Omaha in 2 weeks.
Christopher was SO excited to see the big boys tonight. He followed them EVERYWHERE...even to the shower. Then when we were putting them to bed tonight we had the big boys in their bed and Chris in the crib. Chris refused to sleep in the crib, but the minute I put him in the bed between the big boys, he was out! After he had been out long enough though...I moved him to the crib.
Thanks for all the support and well wishes. I ask for prayers for a little girl who is 4 that will head to Denver at the end of the month for seizures. She has status epilepticus which can be life threatening and her seizures are not well controlled. She needs lots of prayers, as well as her family, that they can find something to help her.
Tuesday, May 17, 2011
Surgery Day
Wow, this day has been exhausting.
We were up bright and early as they were taking Chris to surgery around 6:30 this a.m. He and I both did well until they wheeled him out of the room, but then my heart melted as they "oohed and awwed" over him as he wheeled through the surgery department.
Dr. Goebel came in and visited us. Said it would take about an hour and that should would take care of him like he was her own. Have I mentioned that I love this woman?
As any mom would do...I watched the clock and when the hour mark passed...my chest pain sat in. My anxiety level started to raise and I was 30 seconds away from pacing when Dr. Goebel came out for report and stated that he was doing good. Said that he was a little stridorous and that she gave him steroids for and he had received a shot of morphine, but otherwise was doing good.
She had pic of his scope and let me say...WOW!!!! In the picture of his adenoids she said there was supposed to be an open black circle and his was closed shut with adenoids. When you looked at this airway/throat, his tonsils were about closing that off as well. We were very lucky to not have other major issues. She stated that she has never seen tonsils that huge in someone his age ever!!! And this is one experienced cookie!!
It was a huge sigh of relief, but a huge sigh of somewhat frustration as to...how did we miss this? Could this be our problem all along. Dr. Goebel said that although all tonsil tissue grows, he could have gotten some type of infection that made his worse. It would sure explain the last 2.5 months we've been having. She also said that there was no way he could have effectively swallowed with these tonsils.
We got to see him in the hallway and he jumped in my arms. We got back up to the room and I laid him in bed. One nurse was like...they prefer to be held. Although I'm sure she's probably right...he flails so bad. So I crawled in the crib and snuggled up next to him.
Dr. Thomas showed up shortly after and goes...when does he go to surgery...been there done that...she's like...WOW! She came back in. Said they changed his feeds and that she wants to repeat a swallow study in 4-6 weeks, after we go to Denver.
Stated that we have a 50/50 chance of things getting back to normal in the swallowing category...remember our normal is honey thick liquids, which i will be happy with.
The afternoon was rough. He was having pain, he was fussing and he wasn't tolerating his bolus feeds, not to mention not wanting anything oral and refused to swallow his own spit. It was a long afternoon. He rested off and on, but not good rest. When he was awake however, he breaths a lot quieter than he ever has.
We finally got on top of his pain tonight and although he still whimpers when he coughs, it's better. Jason and I took over all NG cares. I want to be sure we know what we are doing before we hit the highway tomorrow.
Not gonna lie. I was having anxiety about going home. He's bolus feeds weren't going good, his pain wasn't under control and we live 200 miles away. Then Jess came and explained things to me and I began to feel better. Working 2 nights in a row when I get home isn't helping the anxiety though, but we'll get through it.
He got more playful as the night when on, and as jason and I were eating our sandwiches that we had made in the room...since we were about ready to go broke eating in the cafeteria...Chris tried to crawl through the crib to get to our bread. He couldn't eat it fast enough. Then cottage cheese. Then pudding. Then ice cream. THEN part of my ham sandwich!!! MY BABY WAS COMING BACK!! :)
We are good on the NG work, our babe is eating, part of our belongings are in the care and this momma is ready to go home to her big boys and her house that she has missed for a week.
We were up bright and early as they were taking Chris to surgery around 6:30 this a.m. He and I both did well until they wheeled him out of the room, but then my heart melted as they "oohed and awwed" over him as he wheeled through the surgery department.
Dr. Goebel came in and visited us. Said it would take about an hour and that should would take care of him like he was her own. Have I mentioned that I love this woman?
As any mom would do...I watched the clock and when the hour mark passed...my chest pain sat in. My anxiety level started to raise and I was 30 seconds away from pacing when Dr. Goebel came out for report and stated that he was doing good. Said that he was a little stridorous and that she gave him steroids for and he had received a shot of morphine, but otherwise was doing good.
She had pic of his scope and let me say...WOW!!!! In the picture of his adenoids she said there was supposed to be an open black circle and his was closed shut with adenoids. When you looked at this airway/throat, his tonsils were about closing that off as well. We were very lucky to not have other major issues. She stated that she has never seen tonsils that huge in someone his age ever!!! And this is one experienced cookie!!
It was a huge sigh of relief, but a huge sigh of somewhat frustration as to...how did we miss this? Could this be our problem all along. Dr. Goebel said that although all tonsil tissue grows, he could have gotten some type of infection that made his worse. It would sure explain the last 2.5 months we've been having. She also said that there was no way he could have effectively swallowed with these tonsils.
We got to see him in the hallway and he jumped in my arms. We got back up to the room and I laid him in bed. One nurse was like...they prefer to be held. Although I'm sure she's probably right...he flails so bad. So I crawled in the crib and snuggled up next to him.
Dr. Thomas showed up shortly after and goes...when does he go to surgery...been there done that...she's like...WOW! She came back in. Said they changed his feeds and that she wants to repeat a swallow study in 4-6 weeks, after we go to Denver.
Stated that we have a 50/50 chance of things getting back to normal in the swallowing category...remember our normal is honey thick liquids, which i will be happy with.
The afternoon was rough. He was having pain, he was fussing and he wasn't tolerating his bolus feeds, not to mention not wanting anything oral and refused to swallow his own spit. It was a long afternoon. He rested off and on, but not good rest. When he was awake however, he breaths a lot quieter than he ever has.
We finally got on top of his pain tonight and although he still whimpers when he coughs, it's better. Jason and I took over all NG cares. I want to be sure we know what we are doing before we hit the highway tomorrow.
Not gonna lie. I was having anxiety about going home. He's bolus feeds weren't going good, his pain wasn't under control and we live 200 miles away. Then Jess came and explained things to me and I began to feel better. Working 2 nights in a row when I get home isn't helping the anxiety though, but we'll get through it.
He got more playful as the night when on, and as jason and I were eating our sandwiches that we had made in the room...since we were about ready to go broke eating in the cafeteria...Chris tried to crawl through the crib to get to our bread. He couldn't eat it fast enough. Then cottage cheese. Then pudding. Then ice cream. THEN part of my ham sandwich!!! MY BABY WAS COMING BACK!! :)
We are good on the NG work, our babe is eating, part of our belongings are in the care and this momma is ready to go home to her big boys and her house that she has missed for a week.
Monday, May 16, 2011
Surgery Eve
The rest of the day went well. He's slept a lot today and I'm attributing it to the new seizure medicine. We haven't seen any seizures, so we will see if it helps, but we are just kind of hindering everything on Denver on June 6 in that category.
Dr. Goebel was by and said that the sleep study didn't necessarily show any obstruction periods, but he had some type of event 7 times a minute that would wake him up. She said it wasn't alarming, but enough to convince her that the tonsils and adenoids is still the way to go.
She said that instead of removing the tonsil from the wall of the throat, she is going to shave 80-90% off. This will reduce his risk of bleeding, less pain and hopefully not effect his swallow as much as the other would. She will do the same with the adenoids.
While she is in there she is going to scope him to look for a laryngeal cleft which could be causing the aspiration and would mean more surgery. She will also look for fistulas that could also be leading to the aspiration.
I'm not sure how long the procedure will last. She said that there is a chance he might need oxygen afterwards, but stated that she did not book an ICU bed because she is pretty sure he won't need it. Let's hope not.
The feeding issue persists, but the good thing is that Dr. Goebel, Dr. Thomas, Dr. Prestridge and I are all on the same page about the feeding tube. We are going to go with the NG until we know for sure that the tonsils and adenoids didn't help. That will be a repeat swallow and sleep study I'm sure. I know the repeat sleep study is for sure. Dr. Prestridge made sure to stop by tonight to right a note in his chart to tell them to not get in to a big toot about putting in a g-button. I checked, the note is there...it's a sticky on the front of the chart! JK!! :)
The sad part is the NG came out tonight as we were getting ready for his bath. I'm not sure what happened, but the tears I shed, didn't put it back in that's for sure. I bit the bullet though and put it back in. It went okay. Of COURSE he was tied down and crying, but he did well. My biggest concern was him not wanting me after it went in, but he snuggled up, until he saw Sarah (his favorite nurse) and he jumped in to her arms and let her carry him off!
He's resting now and we just wait until morning. Dr. Goebel said that we should be able to go home on Wednesday, but we will have to see. I know the tonsils come out tomorrow, but now we have to deal with the feeding issues.
He hasn't been taking oral foods very much since the NG went down...no surprise. They upped his rate to 50 ml/hr and it runs continuously...I'm sorry, but duh...the kids not going to eat if he keeps getting fed through the tube. So I hope when he goes home, we can run continuous during the night and then bolus during the day. We shall see.
Hopefully more of that will be figured out tomorrow or Wednesday.
The big boys had their last soccer game tonight. I guess Matt scored his first goal of the season and I was upset that I couldn't be there to see it! I didn't even get to talk to him because we were putting the tube back in at that time. I can't wait to have us all under one roof.
Dr. Goebel was by and said that the sleep study didn't necessarily show any obstruction periods, but he had some type of event 7 times a minute that would wake him up. She said it wasn't alarming, but enough to convince her that the tonsils and adenoids is still the way to go.
She said that instead of removing the tonsil from the wall of the throat, she is going to shave 80-90% off. This will reduce his risk of bleeding, less pain and hopefully not effect his swallow as much as the other would. She will do the same with the adenoids.
While she is in there she is going to scope him to look for a laryngeal cleft which could be causing the aspiration and would mean more surgery. She will also look for fistulas that could also be leading to the aspiration.
I'm not sure how long the procedure will last. She said that there is a chance he might need oxygen afterwards, but stated that she did not book an ICU bed because she is pretty sure he won't need it. Let's hope not.
The feeding issue persists, but the good thing is that Dr. Goebel, Dr. Thomas, Dr. Prestridge and I are all on the same page about the feeding tube. We are going to go with the NG until we know for sure that the tonsils and adenoids didn't help. That will be a repeat swallow and sleep study I'm sure. I know the repeat sleep study is for sure. Dr. Prestridge made sure to stop by tonight to right a note in his chart to tell them to not get in to a big toot about putting in a g-button. I checked, the note is there...it's a sticky on the front of the chart! JK!! :)
The sad part is the NG came out tonight as we were getting ready for his bath. I'm not sure what happened, but the tears I shed, didn't put it back in that's for sure. I bit the bullet though and put it back in. It went okay. Of COURSE he was tied down and crying, but he did well. My biggest concern was him not wanting me after it went in, but he snuggled up, until he saw Sarah (his favorite nurse) and he jumped in to her arms and let her carry him off!
He's resting now and we just wait until morning. Dr. Goebel said that we should be able to go home on Wednesday, but we will have to see. I know the tonsils come out tomorrow, but now we have to deal with the feeding issues.
He hasn't been taking oral foods very much since the NG went down...no surprise. They upped his rate to 50 ml/hr and it runs continuously...I'm sorry, but duh...the kids not going to eat if he keeps getting fed through the tube. So I hope when he goes home, we can run continuous during the night and then bolus during the day. We shall see.
Hopefully more of that will be figured out tomorrow or Wednesday.
The big boys had their last soccer game tonight. I guess Matt scored his first goal of the season and I was upset that I couldn't be there to see it! I didn't even get to talk to him because we were putting the tube back in at that time. I can't wait to have us all under one roof.
Monday - Day 6
Not much going on today. We are putting pieces of the puzzle together and making a game plan...hopefully for the future...aka DISCHARGE!! :) No dropping possible discharge dates yet.
We were up at 7 with residents coming in, and are ready for a nap by 9:30 this a.m. When he went to sleep, his breathing was bad and it continues. Lots of retractions and stomach muscles helping him breath. This has been the worst episode since last Tuesday. His sats miraculously were 100% which the nurse and I thought was a miracle due to the fact that he was struggling so hard to breath.
His feedings continue, but hasn't had much of an appetite, but who would when you get continuous feedings. Dr. Thomas said this morning that we have to figure out the feeding and that hopefully once we get the reflux test back we will know if we can change to bolus or not.
Possible PT visit today so we don't have to come back next week!
Waiting for Dr. Goebel, but surgery is at 7 in the morning tomorrow. Gonna nap now because not sure I will sleep much tonight. Will update more later.
We were up at 7 with residents coming in, and are ready for a nap by 9:30 this a.m. When he went to sleep, his breathing was bad and it continues. Lots of retractions and stomach muscles helping him breath. This has been the worst episode since last Tuesday. His sats miraculously were 100% which the nurse and I thought was a miracle due to the fact that he was struggling so hard to breath.
His feedings continue, but hasn't had much of an appetite, but who would when you get continuous feedings. Dr. Thomas said this morning that we have to figure out the feeding and that hopefully once we get the reflux test back we will know if we can change to bolus or not.
Possible PT visit today so we don't have to come back next week!
Waiting for Dr. Goebel, but surgery is at 7 in the morning tomorrow. Gonna nap now because not sure I will sleep much tonight. Will update more later.
Sunday, May 15, 2011
Quiet Day
We had a very rough night last night. He would no more get to sleep, and one of the wires for his sleep study wouldn't be right and they would have to put them back. It was frequent and then we'd have to get him to sleep again.
Lucky for us, one of our favorite nurses, Sarah, was on and he would snuggle up to her when mom couldn't take holding him down anymore. When she came on last night he lit up! It was cute. Our nurse tonight is Megan who was my preceptor in nursing school.
They unhooked him at 4:30 this a.m. and he just fussed so Mom crawled in bed with him and he rested awhile.
The boys were here early this a.m. and unfortunately had to go back with my mom and Dad for school tomorrow. It was very hard to say good bye, not only to the boys, but to Mom, Dad, Michelle and Luke. Jason is here, which helps.
The rest of the day was just play time and nap time, especially for Me! :) I got out for a little bit in the mean time and they decided to move us to the 6th floor and have a view. He pretty much sat in the window the whole time. We went on a stroller ride for like an hour and even went outside and he loved it.
Dr. Goebel was in and said that she couldn't get an OR time for Monday, so Surgery will be Tuesday a.m. at 7. She will scrape his tonsils and adenoids and then scope him to look for a laryngeal cleft which could be the cause of the aspirations.
His breathing is noisy right now again, and feels warm, so finding answers to tests tomorrow will be very beneficial.
Lucky for us, one of our favorite nurses, Sarah, was on and he would snuggle up to her when mom couldn't take holding him down anymore. When she came on last night he lit up! It was cute. Our nurse tonight is Megan who was my preceptor in nursing school.
They unhooked him at 4:30 this a.m. and he just fussed so Mom crawled in bed with him and he rested awhile.
The boys were here early this a.m. and unfortunately had to go back with my mom and Dad for school tomorrow. It was very hard to say good bye, not only to the boys, but to Mom, Dad, Michelle and Luke. Jason is here, which helps.
The rest of the day was just play time and nap time, especially for Me! :) I got out for a little bit in the mean time and they decided to move us to the 6th floor and have a view. He pretty much sat in the window the whole time. We went on a stroller ride for like an hour and even went outside and he loved it.
Dr. Goebel was in and said that she couldn't get an OR time for Monday, so Surgery will be Tuesday a.m. at 7. She will scrape his tonsils and adenoids and then scope him to look for a laryngeal cleft which could be the cause of the aspirations.
His breathing is noisy right now again, and feels warm, so finding answers to tests tomorrow will be very beneficial.
Saturday, May 14, 2011
Rough Go
It's been a rough night tonight and it's only 11 p.m.
Right before Chris woke up from his nap this afternoon I noticed his hands twitching and then when he woke up he was very fussy, which usually he wakes up and is a go getter. He had his pH probe removed and looked like an amazing baby! :)
They placed the NG around 5 and had a difficult time doing it because of swelling, they think, and had to put a bigger tube in than they wanted to. He finally got it placed and then had to put the restraints back on. He had about 20 min of freedom before where he took a bath and enjoyed being able to use his arms! :)
He is on 1/2 strength feeds 24 hours a day because they aren't sure of the refluxing yet. It hasn't bothered him and should the feeding tube have to continue, it sounds like it may change to bolus feeds if no reflux is present. My gut feels a g-button coming on.
Shortly after the NG placement we found out we were going to get our sleep study tonight and I could have jumped across the room and kissed the nurse. This is the test that Dr. Goebel has been wanting and she will be ecstatic when she gets back tomorrow and comes and talks to us.
The downside was hooking him up to the wires. For the most part he just sat there and whimpered, but when it came to laying down he just laid there and cried. He cried so hard that it moved the tegaderm that was holding some of his wires in place. I hate the way he looks right now. He has his NG, O2, some sensor in his nose, a probe on his cheek and he has bandages around his head again.
Tonight he also started running a temp. Not major, but we Tylenol'd him to prevent seizures. He just hasn't been himself all day. He will smile for pictures, but for the most part he's just not himself.
Tonight was hard and Jason and I cried at the side of his crib because he's hooked up to all this stuff and you can hold him and comfort him. The only parts I could touch were his nose, his hands and his feet. I completely understand when I hear about other moms of other children talk about not being able to hold their children. It sucks and mine is only over night...I can't imagine for days and weeks on end.
I shared with one of our favorite nurses, Sarah, tonight that I didn't feel like everything was kosher. She said she'd keep an eye on it and it could very well be my exhaustion. I've been back and forth with Jen as well and she is anxious to hear all the results.
My mom, dad, sister, brother in law and boys go home tomorrow adn I'm not looking forward to it. I haven't got much time with the boys since there has been so much going on with Chris. I can tell it is bothering Drew and when all is said and done, he and I will get to do something fun by ourselves.
Tomorrow should be a better laid out game plan and I am hanging on to the hope that we will be home Tuesday. I know we are where we need to be, but I still want to get home and I can guarentee you there will be a big slumber party when I can have all 3 boys under one roof.
Right before Chris woke up from his nap this afternoon I noticed his hands twitching and then when he woke up he was very fussy, which usually he wakes up and is a go getter. He had his pH probe removed and looked like an amazing baby! :)
They placed the NG around 5 and had a difficult time doing it because of swelling, they think, and had to put a bigger tube in than they wanted to. He finally got it placed and then had to put the restraints back on. He had about 20 min of freedom before where he took a bath and enjoyed being able to use his arms! :)
He is on 1/2 strength feeds 24 hours a day because they aren't sure of the refluxing yet. It hasn't bothered him and should the feeding tube have to continue, it sounds like it may change to bolus feeds if no reflux is present. My gut feels a g-button coming on.
Shortly after the NG placement we found out we were going to get our sleep study tonight and I could have jumped across the room and kissed the nurse. This is the test that Dr. Goebel has been wanting and she will be ecstatic when she gets back tomorrow and comes and talks to us.
The downside was hooking him up to the wires. For the most part he just sat there and whimpered, but when it came to laying down he just laid there and cried. He cried so hard that it moved the tegaderm that was holding some of his wires in place. I hate the way he looks right now. He has his NG, O2, some sensor in his nose, a probe on his cheek and he has bandages around his head again.
Tonight he also started running a temp. Not major, but we Tylenol'd him to prevent seizures. He just hasn't been himself all day. He will smile for pictures, but for the most part he's just not himself.
Tonight was hard and Jason and I cried at the side of his crib because he's hooked up to all this stuff and you can hold him and comfort him. The only parts I could touch were his nose, his hands and his feet. I completely understand when I hear about other moms of other children talk about not being able to hold their children. It sucks and mine is only over night...I can't imagine for days and weeks on end.
I shared with one of our favorite nurses, Sarah, tonight that I didn't feel like everything was kosher. She said she'd keep an eye on it and it could very well be my exhaustion. I've been back and forth with Jen as well and she is anxious to hear all the results.
My mom, dad, sister, brother in law and boys go home tomorrow adn I'm not looking forward to it. I haven't got much time with the boys since there has been so much going on with Chris. I can tell it is bothering Drew and when all is said and done, he and I will get to do something fun by ourselves.
Tomorrow should be a better laid out game plan and I am hanging on to the hope that we will be home Tuesday. I know we are where we need to be, but I still want to get home and I can guarentee you there will be a big slumber party when I can have all 3 boys under one roof.
NG Day
I'm sitting here watching the clock as Chris sleeps. His breathing sounds better than it has in a week, but still has an occasional apneic period. NOTHING like we were a week ago.
Around 4:45, the nurse will be in to pull out our pH probe and then we get to take a quick bath wire free. Shortly after, the NG will be placed for feedings. He has lost 2 pounds since we've been here
I'm very emotional and I feel like a moron...I'm looking at what some of these parents here are dealing with and I am crying over a tube to keep my child hydrated. But at the same time, it's not necessarily the tube I'm upset about, but it's confirmation that there is something wrong with my baby. And no mother wants there to be something wrong with their children. Before you could look at his cuteness and forget about his struggles.
At the same time...we have a team that is INTENT on finding answers. All the doctors we have encountered have been fabulous, minus the resident that I schooled on CP this a.m. and I don't know much about CP. :) But in my experience, you do not use the word "ALL" in the medical world because there is ALWAYS an exception. Basically, he told me that "all" CP kids have low muscle tone but are very rigid...hmmm...I just stated that the CP spectrum is so WIDE and that some CP kids can function normally. His comeback...not many...I was half asleep and didn't argue. :)
Monday is our day of answers...okay maybe not answers, but plan compilation day. It sounds like the EARLIEST we will be home is Tuesday. But no one has dropped the "d" word yet...discharge. I assume because there are still too many unknowns.
Chris is just not quiet himself today. Tired, fussy and not smily much at all. As he lays in bed, he just looks like a little rag doll...okay a big rag doll. He has the elbow restraints on and believe it or not, hasn't been fussy about them much at all. He just has trouble itching his nose and doing his sign language.
My parents, sister and her husband are in town and it was so refreshing to see them this a.m. They are people I'm used to seeing every day. When my Mom and Dad were walking in the room, Chris lit up for the first time today (1130 a.m.) and lept in to Grandma's arms.
He's not eating much today and it has me concerned that the tonsils are swelling more, but we shall see. Dr. Colombo confirmed this a.m. what we already knew...they're huge!
Wish us luck...the next time I update, we will have endured the NG placement.
Around 4:45, the nurse will be in to pull out our pH probe and then we get to take a quick bath wire free. Shortly after, the NG will be placed for feedings. He has lost 2 pounds since we've been here
I'm very emotional and I feel like a moron...I'm looking at what some of these parents here are dealing with and I am crying over a tube to keep my child hydrated. But at the same time, it's not necessarily the tube I'm upset about, but it's confirmation that there is something wrong with my baby. And no mother wants there to be something wrong with their children. Before you could look at his cuteness and forget about his struggles.
At the same time...we have a team that is INTENT on finding answers. All the doctors we have encountered have been fabulous, minus the resident that I schooled on CP this a.m. and I don't know much about CP. :) But in my experience, you do not use the word "ALL" in the medical world because there is ALWAYS an exception. Basically, he told me that "all" CP kids have low muscle tone but are very rigid...hmmm...I just stated that the CP spectrum is so WIDE and that some CP kids can function normally. His comeback...not many...I was half asleep and didn't argue. :)
Monday is our day of answers...okay maybe not answers, but plan compilation day. It sounds like the EARLIEST we will be home is Tuesday. But no one has dropped the "d" word yet...discharge. I assume because there are still too many unknowns.
Chris is just not quiet himself today. Tired, fussy and not smily much at all. As he lays in bed, he just looks like a little rag doll...okay a big rag doll. He has the elbow restraints on and believe it or not, hasn't been fussy about them much at all. He just has trouble itching his nose and doing his sign language.
My parents, sister and her husband are in town and it was so refreshing to see them this a.m. They are people I'm used to seeing every day. When my Mom and Dad were walking in the room, Chris lit up for the first time today (1130 a.m.) and lept in to Grandma's arms.
He's not eating much today and it has me concerned that the tonsils are swelling more, but we shall see. Dr. Colombo confirmed this a.m. what we already knew...they're huge!
Wish us luck...the next time I update, we will have endured the NG placement.
Friday, May 13, 2011
Frustration, Frustration, Frustration.
Christopher did so awesome today with the overnight EEG, all the doctors rounding and visiting Gage to say good-bye. I felt bad for the kid though because he would no more get to nap and someone would wake him up. First to remove the EEG wires and second to put in the pH wire.
Our AWESOME ENT stopped by this a.m. before she boarded a plane to somewhere. Her plan continues to complain until she gets a sleep study. He's on a wait list. She said she will stop in Sunday to see us when she gets back.
They removed his EEG wires around 11 and so he was hooked up to it for about 20 hours. Dr. Nelson came in later and informed us that his EEG was normal. I freaked - in my head- WHAT!!! I mean I wanted to jump and celebrate, but at the same time, I was frustrated that it was saying that it was negative. He said since we had seen activity however, that he wasn't going to take him off the med, but switched him to a once a day one that doesnt have to have lab draws to regulate it. BONUS!
Jairren, my sister-in-law was with me and reassured me after Dr. Nelson left that it is not uncommon for EEGs to be normal in epileptics. I emailed a couple ladies through the Epilepsy Foundation I have met and asked them too. They both reiterated what Jairren said. The good part of it is that this gives us more hope for him growing out of them and that the apnea is not linked to a seizure. We will keep our appointment in Denver on June 6 with the epileptologist.
Then the pulmonologist that is on for the weekend came around and introduced himself. Was concerned again with the aspiration. Looked at my videos and then questioned what we were going to do about feeding him until we can get the possible cause figured out. It's refreshing that we are looking for a cause.
They are still talking g-button and whether he is refluxing too, so they are doing a test, that watches the pH in his esophagus to see if he's refluxing. We have to push a button for every little thing he does, so much so that i feel like I'm playing a video game. If you looked at pictures, it's the one that looks like a feeding tube, but it is indeed a test. He struggled with it at supper and eating and sounds kind of cruddy tonight.
The bad part about the pH test is that to keep him from pulling out the wires, he has to have elbow restraints. The funny part is watching him try to feed himself...i know horrible mom. He finally grabbed my hand so he could itch his nose and head. The pH wire stays in for 24 hours. :(
Jason and the big boys showed up around 6:30 and it was SO SO good to see them. Today was a frustrating day on all ends. It was Andrew's track and field day and I was mad I couldn't be there, but knew I was where I needed to be. Jason took videos and sent them to me and I cried with everyone.
When they arrived, Matthew went straight for me. Chris and I had hopped in the stroller and went for a walk and sat by the fountain/stream and watched the water. He eventually maneuvered himself to get his toes in it. Not sure we were supposed to, but like I told Jason...at least he didn't pee in it.
The big boys and I went out for supper at our favorite establishment...Jack and Mary's. Andrew ate and talked...surprise surprise...and Matt ate and snuggled...pretty much his norm. Matt wanted to come back to the hospital and sleep with me. I then took them to Cindy's for the night, which I'm worried will be hard on Matt because he just got here...but Jason is out there.
When I got back to the hospital, I heard a baby screaming, when I went in to the room, Jason and Chris were missing. I listened a little bit closer and sure enough, those were my baby's screams! His IV went bad and they were trying to restart it. It was a horrible feeling knowing that he was going through this and I wasn't there. I promised not to leave for that long again. Jason did good though. Even though he denied it, I could tell it bothered him.
After 4 sticks they couldn't get it and Tina (one of my favorites - her son has epilepsy, hypotonia and dysphagia...sound familiar?) called the physician who said to leave it out, but stated the inevitable...NG.
So that's where we are at...It sounds like after the pH test is done, the NG will be placed for feedings. I guess we have to...Jen has always said it will be her job to get him off of it.
Tonight he was up until after 11 bouncing back and forth from Jason and I, loving each one of us. He even showed his love by biting me - now I have a huge bruise and welt. Obviously he is sick of helping hold him down.
Mom, Dad, Michelle, Luke and Lily are coming down tomorrow and I can't wait. Yesterday, I would have given anything for my Mom to be here so I am looking forward to them. Jason's family has been popping in and out and I am very greatful, but nothing is better than having your own family and I'm dying for sister time.
The circles and few answers continue. I just finished talking with our nurse and it sounds like we will have a sleep study this weekend and then surgery Monday, and possible home Tuesday. It will all depend on what they figure out...We'll get there.
Our AWESOME ENT stopped by this a.m. before she boarded a plane to somewhere. Her plan continues to complain until she gets a sleep study. He's on a wait list. She said she will stop in Sunday to see us when she gets back.
They removed his EEG wires around 11 and so he was hooked up to it for about 20 hours. Dr. Nelson came in later and informed us that his EEG was normal. I freaked - in my head- WHAT!!! I mean I wanted to jump and celebrate, but at the same time, I was frustrated that it was saying that it was negative. He said since we had seen activity however, that he wasn't going to take him off the med, but switched him to a once a day one that doesnt have to have lab draws to regulate it. BONUS!
Jairren, my sister-in-law was with me and reassured me after Dr. Nelson left that it is not uncommon for EEGs to be normal in epileptics. I emailed a couple ladies through the Epilepsy Foundation I have met and asked them too. They both reiterated what Jairren said. The good part of it is that this gives us more hope for him growing out of them and that the apnea is not linked to a seizure. We will keep our appointment in Denver on June 6 with the epileptologist.
Then the pulmonologist that is on for the weekend came around and introduced himself. Was concerned again with the aspiration. Looked at my videos and then questioned what we were going to do about feeding him until we can get the possible cause figured out. It's refreshing that we are looking for a cause.
They are still talking g-button and whether he is refluxing too, so they are doing a test, that watches the pH in his esophagus to see if he's refluxing. We have to push a button for every little thing he does, so much so that i feel like I'm playing a video game. If you looked at pictures, it's the one that looks like a feeding tube, but it is indeed a test. He struggled with it at supper and eating and sounds kind of cruddy tonight.
The bad part about the pH test is that to keep him from pulling out the wires, he has to have elbow restraints. The funny part is watching him try to feed himself...i know horrible mom. He finally grabbed my hand so he could itch his nose and head. The pH wire stays in for 24 hours. :(
Jason and the big boys showed up around 6:30 and it was SO SO good to see them. Today was a frustrating day on all ends. It was Andrew's track and field day and I was mad I couldn't be there, but knew I was where I needed to be. Jason took videos and sent them to me and I cried with everyone.
When they arrived, Matthew went straight for me. Chris and I had hopped in the stroller and went for a walk and sat by the fountain/stream and watched the water. He eventually maneuvered himself to get his toes in it. Not sure we were supposed to, but like I told Jason...at least he didn't pee in it.
The big boys and I went out for supper at our favorite establishment...Jack and Mary's. Andrew ate and talked...surprise surprise...and Matt ate and snuggled...pretty much his norm. Matt wanted to come back to the hospital and sleep with me. I then took them to Cindy's for the night, which I'm worried will be hard on Matt because he just got here...but Jason is out there.
When I got back to the hospital, I heard a baby screaming, when I went in to the room, Jason and Chris were missing. I listened a little bit closer and sure enough, those were my baby's screams! His IV went bad and they were trying to restart it. It was a horrible feeling knowing that he was going through this and I wasn't there. I promised not to leave for that long again. Jason did good though. Even though he denied it, I could tell it bothered him.
After 4 sticks they couldn't get it and Tina (one of my favorites - her son has epilepsy, hypotonia and dysphagia...sound familiar?) called the physician who said to leave it out, but stated the inevitable...NG.
So that's where we are at...It sounds like after the pH test is done, the NG will be placed for feedings. I guess we have to...Jen has always said it will be her job to get him off of it.
Tonight he was up until after 11 bouncing back and forth from Jason and I, loving each one of us. He even showed his love by biting me - now I have a huge bruise and welt. Obviously he is sick of helping hold him down.
Mom, Dad, Michelle, Luke and Lily are coming down tomorrow and I can't wait. Yesterday, I would have given anything for my Mom to be here so I am looking forward to them. Jason's family has been popping in and out and I am very greatful, but nothing is better than having your own family and I'm dying for sister time.
The circles and few answers continue. I just finished talking with our nurse and it sounds like we will have a sleep study this weekend and then surgery Monday, and possible home Tuesday. It will all depend on what they figure out...We'll get there.
Wednesday, May 11, 2011
Got a Lot Done Today
Our day started off at 8 a.m. with an appointment with Dr. Thomas, pulmonologist who does great work with aspiration. After that I remember thinking that it had to be about 4 p.m. and when I looked at the clock and it was 1:50. Ugh!
Dr. Thomas looked at his previous xrays and ordered new ones after getting a history on Chris. She came back with word that his tonsils and adenoids were HUGE! I have since looked at the xray and can not confirm or deny this...basically because I don't know what I'm looking at. His nurse Sara and I just made some guesses! :) Anyway, she also ordered a swallow study, which increased my anxiety and watched my videos that I have been recording of Chris breathing. (Once I get to the car to get my cord for my camcorder, I hope to download one.)
By just watching the video she looked at me and said...you came prepared to stay right? I said yes...so she said that the plan was to then admit him for further tests and observation, but in the meantime Dr. Goebel (ENT - the main reason we came down) was gonna sneak in and see him.
Now, I know the Lord works in mysterious ways and he did this morning by gracing Chris with his nap shortly before Dr. Goebel came in and quickly made him sound like his worst...Thank you Jesus! After introducing herself, she goes..."I don't have to ask why you're here." Then she said she had heard lots about Chris and I...I'm hoping it's all good. :)
We chatted, she looked him over, and then she stated again that the adenoids and tonsils are HUGE. The funny part about all the doctors saying his tonsils are HUGE...is that his eyes get really big when they say it too! :)
The plan was made to take them out, but because of his extensive history, she wanted a sleep study first, but wasn't sure if she could get the sleep study, since they are booked out until July, but stated she was going to whine and cry enough to get it. :) As I walked out of the clinic to have Chris admitted, I asked if it was just over night or what the plan was and the nurse goes...no hun, I think you're here until the tonsils and adenoids come out...which at this time...is Monday.
We had our swallow study this afternoon and much to my dismay, we failed. He again is aspirating the honey thick liquids and cheetos. I think that took more out of me than the whole being hospitalized until Monday. We have gone backwards. I still want to argue with the lady though that did the test, because what she was calling aspiration, I was calling penetration, but again, I am not a radiologist.
I spoke with Jen about it and will get her a copy so I can get her opinion. But for now they took away his liquids and put him on an IV for fluids.
The Resident (Dr. Singh) that admitted us was very nice. I liked him very much. He was very willing to listen to my concerns and what I wanted and how to do things. We just had trouble with 2 things...not being able to read a crystal ball and the feeding tube issue.
I kept asking questions about what was going to happen and when it was going to happen and how it was going to happen and most of the time he said...I'm not sure. I reassured him that I am just very impatient and appreciated all he had to offer!
The feeding tube issue...wasn't backing down on that one. I told him that I did not feel that an NG was the way to go and did not feel comfortable without talking to Dr. Prestridge. I said he can either have pudding thick liquids or and IV...no tube at this point because he wasn't going to keep it in. His response...Let me go talk to Dr. Wilson.
When he came back in...Bless his Soul...he said that he was cool with an IV and that he would address the swallowing issue with Dr. Prestridge tomorrow....GREAT ANSWER. Pretty sure he walked out of the room though thinking I was a major rip! :) My dad was proud of me! :) He has been very against a feeding tube since the get go.
Now, don't get me wrong, last week we thought that was the only thing we had left until we discovered these ginormous tonsils that have surfaced and it sounds like everyone is hoping that taking them out will help alleviate the issues. Lord, I hope so!!!
This evening was good. Had a bit of company, then rested and snuggled awhile. Grandma K brought him a Curious George stuffed animal and we are lovin that.
Around 9 they came in to put his monitor on that is monitoring his respirations, heart rate and oxygen saturations. This will also tell if he is having periods of apnea. He's had a couple priods of apnea and has had once incident where he bradied down in to the 80s. He's wrapped up in wires and my hope is they just don't get undone. THe one good thing is that his sats have remained good through all of this.
I stepped out of the room for a few minute tonight to visit with some friends form back home that are just down the hall from us. It was good visiting with them and then their nurse is an O'Neill-ite as well. I also ran in to the nurse that I precepted under when I was in nursing school and it was great to get caught up with her.
The big boys are doing well. They have soccer tomorrow night and then Drew has his track meet on Friday. Jason is home and staying with them although he would kill to be down here with us. We gave the big boys the option of coming down Friday after the track meet or coming down Saturday after soccer. Jason and I was sure they would say Friday, but much to our surprise...after soccer!! :) Which is fine...they need some normalcy. Jason saved our house from a fire tonight by cleaning out the lent trap and hose that was 50% full of lent! Good heavens! That's the last thing we need.
Best get some sleep. Tomorrow is looking to be another long day with our neuro consult and more tests.
Dr. Thomas looked at his previous xrays and ordered new ones after getting a history on Chris. She came back with word that his tonsils and adenoids were HUGE! I have since looked at the xray and can not confirm or deny this...basically because I don't know what I'm looking at. His nurse Sara and I just made some guesses! :) Anyway, she also ordered a swallow study, which increased my anxiety and watched my videos that I have been recording of Chris breathing. (Once I get to the car to get my cord for my camcorder, I hope to download one.)
By just watching the video she looked at me and said...you came prepared to stay right? I said yes...so she said that the plan was to then admit him for further tests and observation, but in the meantime Dr. Goebel (ENT - the main reason we came down) was gonna sneak in and see him.
Now, I know the Lord works in mysterious ways and he did this morning by gracing Chris with his nap shortly before Dr. Goebel came in and quickly made him sound like his worst...Thank you Jesus! After introducing herself, she goes..."I don't have to ask why you're here." Then she said she had heard lots about Chris and I...I'm hoping it's all good. :)
We chatted, she looked him over, and then she stated again that the adenoids and tonsils are HUGE. The funny part about all the doctors saying his tonsils are HUGE...is that his eyes get really big when they say it too! :)
The plan was made to take them out, but because of his extensive history, she wanted a sleep study first, but wasn't sure if she could get the sleep study, since they are booked out until July, but stated she was going to whine and cry enough to get it. :) As I walked out of the clinic to have Chris admitted, I asked if it was just over night or what the plan was and the nurse goes...no hun, I think you're here until the tonsils and adenoids come out...which at this time...is Monday.
We had our swallow study this afternoon and much to my dismay, we failed. He again is aspirating the honey thick liquids and cheetos. I think that took more out of me than the whole being hospitalized until Monday. We have gone backwards. I still want to argue with the lady though that did the test, because what she was calling aspiration, I was calling penetration, but again, I am not a radiologist.
I spoke with Jen about it and will get her a copy so I can get her opinion. But for now they took away his liquids and put him on an IV for fluids.
The Resident (Dr. Singh) that admitted us was very nice. I liked him very much. He was very willing to listen to my concerns and what I wanted and how to do things. We just had trouble with 2 things...not being able to read a crystal ball and the feeding tube issue.
I kept asking questions about what was going to happen and when it was going to happen and how it was going to happen and most of the time he said...I'm not sure. I reassured him that I am just very impatient and appreciated all he had to offer!
The feeding tube issue...wasn't backing down on that one. I told him that I did not feel that an NG was the way to go and did not feel comfortable without talking to Dr. Prestridge. I said he can either have pudding thick liquids or and IV...no tube at this point because he wasn't going to keep it in. His response...Let me go talk to Dr. Wilson.
When he came back in...Bless his Soul...he said that he was cool with an IV and that he would address the swallowing issue with Dr. Prestridge tomorrow....GREAT ANSWER. Pretty sure he walked out of the room though thinking I was a major rip! :) My dad was proud of me! :) He has been very against a feeding tube since the get go.
Now, don't get me wrong, last week we thought that was the only thing we had left until we discovered these ginormous tonsils that have surfaced and it sounds like everyone is hoping that taking them out will help alleviate the issues. Lord, I hope so!!!
This evening was good. Had a bit of company, then rested and snuggled awhile. Grandma K brought him a Curious George stuffed animal and we are lovin that.
Around 9 they came in to put his monitor on that is monitoring his respirations, heart rate and oxygen saturations. This will also tell if he is having periods of apnea. He's had a couple priods of apnea and has had once incident where he bradied down in to the 80s. He's wrapped up in wires and my hope is they just don't get undone. THe one good thing is that his sats have remained good through all of this.
I stepped out of the room for a few minute tonight to visit with some friends form back home that are just down the hall from us. It was good visiting with them and then their nurse is an O'Neill-ite as well. I also ran in to the nurse that I precepted under when I was in nursing school and it was great to get caught up with her.
The big boys are doing well. They have soccer tomorrow night and then Drew has his track meet on Friday. Jason is home and staying with them although he would kill to be down here with us. We gave the big boys the option of coming down Friday after the track meet or coming down Saturday after soccer. Jason and I was sure they would say Friday, but much to our surprise...after soccer!! :) Which is fine...they need some normalcy. Jason saved our house from a fire tonight by cleaning out the lent trap and hose that was 50% full of lent! Good heavens! That's the last thing we need.
Best get some sleep. Tomorrow is looking to be another long day with our neuro consult and more tests.
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