Another week has passed and our therapy is coming to an end for this round. Jen asked me if I wanted to continue and I told her for the sake of our family, we needed a break. Chris has one more treatment on Monday and a visit with Dr. Prestridge and then we head home...for a few weeks.
Chris continues to do well with therapy and for the matter at hand...when he's not at therapy. I've struggled this week with stopping versus keeping going and if it's doing anything and what have you. This is the list I've come up with, but let me remind you first, that before therapy started, Chris had no sounds and choked, coughed and gagged on every meal and through the night!
Since therapy we:
1. sleep through the night with no coughing
2. eat a meal with rarely a cough - still an improvement from the "clearing" cough
3. tolerate big boy foods
4. have multiple sounds, including: mom, da, ba ba, cup, up
5. rarely ever do we choke
6. have a very dear friend in Jen - this may be a stretch! :)
I swear the list was bigger earlier. The sounds in and of themself are HUGE!!! We also have growls and grunts and all sorts of funny noises. His latest thing has been furrowing his eyebrows and he knows that exactly the right time!
Our legs have had no improvement. There are most likely going to be PT appointments coming up, but hopefully we will get to do that from here!
The boys are back to school on Tuesday and it will be great to get back to normal.
Wednesday, December 29, 2010
Wednesday, December 22, 2010
Tuesday
Whew...we've been busy since the last time I've updated. I worked a couple shifts, we had Shoemaker Christmas, had a little man turn 1 and made yet another trip back to Omaha. Somewhere in there I did laundry...I promise! :)
We remain status quo...which I am content with. Chris is doing great...minus the big bruise on his head I accidentally inflicted this afternoon. We were playing in the kitchen here at Grandma K's and...BONK...onto the hard floor! I can say however, that he has still had less bruising to his cranium than either one of the older boys have! :)
The funny thing is that he's started grunting and growling. To get playing with the big boys or getting mad at you he growls. He'll even just crawl up behind you and growl at your heels. It's hilarious. I wish I could share it with everyone.
Anyway, we are on to 1 of our last 5 treatments for the year. I was reminded today that we have been making this trip back and forth for 3-4 days at a time since the Week of Nov. 8. Oy! I'm not sure where the time has gone!
Anywho, he is doing great and tolerating treatment just fine. His every move and everything that goes in to his mouth has started to be documented. After my scare last week, I have resorted back to baby food which Jen wanted me to get him off of, but it is the only constant that I can keep with going from Aunt Claire's to Grandma Shoe's to daycare. In the last couple weeks I've learned about watching for residual and what to do if it's there and how to clear if it is and how to change the viscosity of the food if it is...I didn't feel like sharing that with all the people that feed him and he does great with baby food! :)
Jen and I have come to the conclusion though that we thing his swallowing is worsened by the copious amounts of snot and mucous he has. I have been giving him a decongestant, but it makes him so sleepy and when he fatigues and we try to eat...you guessed it...more issues...so it's just a viscious cycle.
Tomorrow we will have therapy in the a.m. and then see our favorite Dr. K around noon to see what he thinks about the mucous issue and to just discuss with him what he's thinking. I can share with you that, after 3 emails and much, MUCH suggestion from him, we see genetics...in March. That was the soonest we could get him in. He is however, on the cancel list. Dr. K's point was the fact that with hypotonia and the dysphagia, they are not definite diagnosis. They are symptoms that can lead to other diagnoses, many of them syndromes. He stated in his emails that there are some pretty serious ones that we may want to know about for the future.
With that said, if you read the front page of the Omaha World Herald Sunday, you may be following me, if you didn't I put the link on my facebook or google it! It's worth the read...just keep kleenexes handy. I will be honest...I bawled through most of it. The only symptom that this child had that Chris hasn't...respiratory distress and with our mucous trouble and aspiration problems...it worries me. Now, do I think he has what this other baby had...no, I would hope if he did signs of it could be picked up on the MRI, however, it just makes a person think.
It's been hard lately watching kids his age and younger, walk and talk and do things that he should be doing and not feel sad and frustrated about it. I remind myself that things could be TOTALLY worse, but I know he'd love to be running with the big boys. He'll catch up eventually I know, but I just worry as to how long that will take. Our EDN services were denied because he is where an 11 month old should be so he's "Not that bad." Cognitively he's on track.
We celebrated Chris' birthday Sunday with family and it was so much fun. Chris ate it up. I propped him on the table to open his gifts and he did so good! We are truly blessed to have such an amazing family and close friends! We even celebrated Jack's birthday (our nephew) which is tomorrow.
This week has been better for the big boys. They got to come down with me and get completely spoiled by Grandma K on Monday, which then drove Mom nuts Monday night! God bless the woman, but I'm pretty sure she does it on purpose...she just needs to wait til her son is around!! :) HAHA! Kidding! They had a ball. Tonight we went to the Western Heritage Museum and after a 45 min wait for Santa we were all ready to run wild! The boys were SO good though.
They've had fun though. Today after Chris' therapy I took them on a tour of my favorite places in Omaha and showed them where I used to live when I met Jason and where my Great-Grandma Chris lived and where Grandma and Grandpa Shoemaker met...technically. It was so much fun. Drew loved every minute of it and Matt could care less. Chris slept through it all!! :)
We head home tomorrow and then I work my 2 shifts, including part of the holiday. I would be lying if I didn't say that I am looking forward to our break from therapy. It is doing great things for him, but it's running me ragged. I told Jason tonight that I am taking a 24 hour personal day in January! :) He was okay with it...I think he knows it will be good for his health and safety too! :) HEHE!
We remain status quo...which I am content with. Chris is doing great...minus the big bruise on his head I accidentally inflicted this afternoon. We were playing in the kitchen here at Grandma K's and...BONK...onto the hard floor! I can say however, that he has still had less bruising to his cranium than either one of the older boys have! :)
The funny thing is that he's started grunting and growling. To get playing with the big boys or getting mad at you he growls. He'll even just crawl up behind you and growl at your heels. It's hilarious. I wish I could share it with everyone.
Anyway, we are on to 1 of our last 5 treatments for the year. I was reminded today that we have been making this trip back and forth for 3-4 days at a time since the Week of Nov. 8. Oy! I'm not sure where the time has gone!
Anywho, he is doing great and tolerating treatment just fine. His every move and everything that goes in to his mouth has started to be documented. After my scare last week, I have resorted back to baby food which Jen wanted me to get him off of, but it is the only constant that I can keep with going from Aunt Claire's to Grandma Shoe's to daycare. In the last couple weeks I've learned about watching for residual and what to do if it's there and how to clear if it is and how to change the viscosity of the food if it is...I didn't feel like sharing that with all the people that feed him and he does great with baby food! :)
Jen and I have come to the conclusion though that we thing his swallowing is worsened by the copious amounts of snot and mucous he has. I have been giving him a decongestant, but it makes him so sleepy and when he fatigues and we try to eat...you guessed it...more issues...so it's just a viscious cycle.
Tomorrow we will have therapy in the a.m. and then see our favorite Dr. K around noon to see what he thinks about the mucous issue and to just discuss with him what he's thinking. I can share with you that, after 3 emails and much, MUCH suggestion from him, we see genetics...in March. That was the soonest we could get him in. He is however, on the cancel list. Dr. K's point was the fact that with hypotonia and the dysphagia, they are not definite diagnosis. They are symptoms that can lead to other diagnoses, many of them syndromes. He stated in his emails that there are some pretty serious ones that we may want to know about for the future.
With that said, if you read the front page of the Omaha World Herald Sunday, you may be following me, if you didn't I put the link on my facebook or google it! It's worth the read...just keep kleenexes handy. I will be honest...I bawled through most of it. The only symptom that this child had that Chris hasn't...respiratory distress and with our mucous trouble and aspiration problems...it worries me. Now, do I think he has what this other baby had...no, I would hope if he did signs of it could be picked up on the MRI, however, it just makes a person think.
It's been hard lately watching kids his age and younger, walk and talk and do things that he should be doing and not feel sad and frustrated about it. I remind myself that things could be TOTALLY worse, but I know he'd love to be running with the big boys. He'll catch up eventually I know, but I just worry as to how long that will take. Our EDN services were denied because he is where an 11 month old should be so he's "Not that bad." Cognitively he's on track.
We celebrated Chris' birthday Sunday with family and it was so much fun. Chris ate it up. I propped him on the table to open his gifts and he did so good! We are truly blessed to have such an amazing family and close friends! We even celebrated Jack's birthday (our nephew) which is tomorrow.
This week has been better for the big boys. They got to come down with me and get completely spoiled by Grandma K on Monday, which then drove Mom nuts Monday night! God bless the woman, but I'm pretty sure she does it on purpose...she just needs to wait til her son is around!! :) HAHA! Kidding! They had a ball. Tonight we went to the Western Heritage Museum and after a 45 min wait for Santa we were all ready to run wild! The boys were SO good though.
They've had fun though. Today after Chris' therapy I took them on a tour of my favorite places in Omaha and showed them where I used to live when I met Jason and where my Great-Grandma Chris lived and where Grandma and Grandpa Shoemaker met...technically. It was so much fun. Drew loved every minute of it and Matt could care less. Chris slept through it all!! :)
We head home tomorrow and then I work my 2 shifts, including part of the holiday. I would be lying if I didn't say that I am looking forward to our break from therapy. It is doing great things for him, but it's running me ragged. I told Jason tonight that I am taking a 24 hour personal day in January! :) He was okay with it...I think he knows it will be good for his health and safety too! :) HEHE!
Tuesday, December 14, 2010
Dr. P
Therapy went well again this morning. I learned potatoes may not be his thing. They work well at therapy though because the vitalstim machine helps give him the extra strength he needs to swallow them.
It's just so much to wrap your brain around and I've never had to think about food so much and put so much thought in to it. You have to factor in viscosity and texture and everything else he's eating with it. OY! We will make it though! I just open up my mouth and swallow! :) Chris has that problem too...his just gets stuck! :)
We saw Dr. Prestridge and she said overall she is happy with him. She too, is thinking along the lines of hypotonia. Not sure as to why, but should that be the diagnosis, if we ever get one...that makes a lot of sense, even from birth.
Anyway, she stated that she is okay with the choking and the coughing in his case because it is his way of keeping his airway clear. She said that if he was having numerous lung infections, it would be a different story, but for now he's not.
Because he isn't having the lung infections, she does not want to put in feeding tube in...YAY! She said that she is afraid that once she puts it in, it would take a long time to get rid of it. This being because he would get everything through a tube except for at therapy and then our muscle strength would go down hill...fast.
So that's where we are at. We continue with therapy and hope things get back to where they were last week. I have to retrain my brain to know that choking and coughing is okay after he eats or between or whatever because it's his defense mechanism. We will follow up with Dr. Prestridge in a couple weeks. But she sure likes how he likes to flirt with her! ;)
It's just so much to wrap your brain around and I've never had to think about food so much and put so much thought in to it. You have to factor in viscosity and texture and everything else he's eating with it. OY! We will make it though! I just open up my mouth and swallow! :) Chris has that problem too...his just gets stuck! :)
We saw Dr. Prestridge and she said overall she is happy with him. She too, is thinking along the lines of hypotonia. Not sure as to why, but should that be the diagnosis, if we ever get one...that makes a lot of sense, even from birth.
Anyway, she stated that she is okay with the choking and the coughing in his case because it is his way of keeping his airway clear. She said that if he was having numerous lung infections, it would be a different story, but for now he's not.
Because he isn't having the lung infections, she does not want to put in feeding tube in...YAY! She said that she is afraid that once she puts it in, it would take a long time to get rid of it. This being because he would get everything through a tube except for at therapy and then our muscle strength would go down hill...fast.
So that's where we are at. We continue with therapy and hope things get back to where they were last week. I have to retrain my brain to know that choking and coughing is okay after he eats or between or whatever because it's his defense mechanism. We will follow up with Dr. Prestridge in a couple weeks. But she sure likes how he likes to flirt with her! ;)
Monday, December 13, 2010
Not So Good
The rest of the day did not go so well. When I had called Dr. Prestridge's office they said that she would either call me or call us back to come in....We see her tomorrow at 11:30 a.m.
I didn't starve him, but kind of gave him a rest. Gave him his first food after therapy which was a 6 oz bottle around 3:30. He did GREAT! We threw in a few little yogurt melts and no problems. A few coughs, but nothing that concerned me.
Supper, however, was a completely different story. I mashed up some potatoes that Cindy had made and yeah...not so good. The first bite, choke! He gagged and spit it back up so I gave him a break and we tried a second bite....CHOKE! Seriously?! Then he gagged and gagged and gagged! He gagged so much after choking that he threw up multiple times!
I cut off the potatoes and brought out some babyfood bananas and...he did fine! Did some of those and then tried the potatoes again...and fine...however, once we were all done eating...Choke and gag! So we just hung out!
He was starting to get a little fussy so I thought I'd try another bottle and he did awesome! Only one cough and we were asleep! He's been pretty good since.
Ugh!!! I am so frustrated. Jen and I are anxious to see what Dr. P has to say.
The exicting news for the day...we started to take steps!!! :) Just small ones, but we went back and forth from the recliner, to the end table and then to the footstool! So exciting, exciting.
Just wait and see what Dr. P says tomorrow. I am just hoping for sleep tonight.
I didn't starve him, but kind of gave him a rest. Gave him his first food after therapy which was a 6 oz bottle around 3:30. He did GREAT! We threw in a few little yogurt melts and no problems. A few coughs, but nothing that concerned me.
Supper, however, was a completely different story. I mashed up some potatoes that Cindy had made and yeah...not so good. The first bite, choke! He gagged and spit it back up so I gave him a break and we tried a second bite....CHOKE! Seriously?! Then he gagged and gagged and gagged! He gagged so much after choking that he threw up multiple times!
I cut off the potatoes and brought out some babyfood bananas and...he did fine! Did some of those and then tried the potatoes again...and fine...however, once we were all done eating...Choke and gag! So we just hung out!
He was starting to get a little fussy so I thought I'd try another bottle and he did awesome! Only one cough and we were asleep! He's been pretty good since.
Ugh!!! I am so frustrated. Jen and I are anxious to see what Dr. P has to say.
The exicting news for the day...we started to take steps!!! :) Just small ones, but we went back and forth from the recliner, to the end table and then to the footstool! So exciting, exciting.
Just wait and see what Dr. P says tomorrow. I am just hoping for sleep tonight.
Up in the Air
After a horrible, HORRIBLE night and taking food away from Chris...the night was horrible! He coughed and choked and cried and repeated that cycle about every 2-10 min. He had about an hour of pure rest. I was so scared last evening and for 4 hours contemplated whether or not I should take him to the ED. He would cough and gag and choke. He just laid on me limp and cried. At times he would cry and then maneuver so he could tilt his head back and get his airway open. As a nurse this scared me, as a mommy it terrified me.
He had therapy this morning at 9 and immediately Jen was assessing things to see if she could figure what triggered this episode. We didn't find anything in common that would red flag us.
We did therapy and of course, he did great! No episodes for Jen and she assured me that she believed my assessment and that the reason is was doing good today could very well likely be because we had him hooked up to the vitalstim machine! He didn't cough much after for Jen, but since we have left it's been almost a non-stop cough. I have him resting now.
Jen and I decided that we should talk to Dr. Prestridge. We both have a feeling we know what is coming...a feeding tube, which neither one of us want, but we sure don't want to keep his airway threatened like I feel it was last night. I was just so hopeful that we could put this to bed altogether.
I just sit here and wait for Dr. P to call or Dr. K. Put a call out to him too! Jen's kids see Dr. Kronberg as well so she and I have a lot of comfort and faith in him as moms and professionals.
Will update more when I know what else is going on. I'm hoping we test therapy for another week! At the same time though, I don't feel safe bringing him home with how he was last night.
He had therapy this morning at 9 and immediately Jen was assessing things to see if she could figure what triggered this episode. We didn't find anything in common that would red flag us.
We did therapy and of course, he did great! No episodes for Jen and she assured me that she believed my assessment and that the reason is was doing good today could very well likely be because we had him hooked up to the vitalstim machine! He didn't cough much after for Jen, but since we have left it's been almost a non-stop cough. I have him resting now.
Jen and I decided that we should talk to Dr. Prestridge. We both have a feeling we know what is coming...a feeding tube, which neither one of us want, but we sure don't want to keep his airway threatened like I feel it was last night. I was just so hopeful that we could put this to bed altogether.
I just sit here and wait for Dr. P to call or Dr. K. Put a call out to him too! Jen's kids see Dr. Kronberg as well so she and I have a lot of comfort and faith in him as moms and professionals.
Will update more when I know what else is going on. I'm hoping we test therapy for another week! At the same time though, I don't feel safe bringing him home with how he was last night.
Sunday, December 12, 2010
Set Back
It's been a rough few days for Mr. Christopher! Last Wednesday, Jen thinned his liquids just slightly and it seems like we've been fighting things every since and they've progressively gotten worse.
Wednesday the cough was back a bit and then Thursday and Friday it was back in full swing with relation to feedings and it sounds horrible. Friday night we had a choking incident and I told Jen that I wasn't too worrried because it didn't have much aftermath, until today. Let me rewind...Saturday night was horrible, he pretty much coughed and choked the whole night! It was horrible. We didn't sleep much.
Today didn't get any better. We had Chicken casserole for lunch and I tried the noodles, but he choked on those, so I switched to thickened baby food, went a little better. We had a rough afternoon, then at supper, he had thickened baby food again and milk from a cup and he choked on every almost every bite.
It's so frustrating. I've been in touch numerous times a day with Jen, our therapist, and we are both baffled. The poor baby sounds like he's hacking up a lung when he coughs! His poor little chest just rattles and he sounds so congested, but as far as my ear can tell, they are mostly clear...but they do sound a little gunky. He coughs so hard that he cries afterward.
I'm not going to feed him again until we see Jen in the morning, we may be visiting with Dr. Prestridge this week and most likely another swallow study to see if something has changed. He's getting very fatigued with his feedings and not sure as to why. I have a feeling we will be seeing Dr. Murphy as well.
This evening has been horrible, he continues to cough and choke with no stimulation whatsoever, so I know the stridor is coming. All of this that Dr. Murphy didn't want to happen again.
The hard thing about it is that we will do appts and tests this week and Tuesday I have to give up control and hope that things are figured out before I have to come home Tuesday night to work Wednesday. Chris will stay here and I will have family in Omaha take him to therapy and then other family meet them halfway on the highway to get him home.
Not that he won't be in great hands, but it worries me because I can't control his intake and monitor his every move...moreso every breath and swallow. We are still on that fine line with a feeding tube and tonight I'm not very hopeful that it is compeletely out of the picture.
The next couple days will be the tell all!
Wednesday the cough was back a bit and then Thursday and Friday it was back in full swing with relation to feedings and it sounds horrible. Friday night we had a choking incident and I told Jen that I wasn't too worrried because it didn't have much aftermath, until today. Let me rewind...Saturday night was horrible, he pretty much coughed and choked the whole night! It was horrible. We didn't sleep much.
Today didn't get any better. We had Chicken casserole for lunch and I tried the noodles, but he choked on those, so I switched to thickened baby food, went a little better. We had a rough afternoon, then at supper, he had thickened baby food again and milk from a cup and he choked on every almost every bite.
It's so frustrating. I've been in touch numerous times a day with Jen, our therapist, and we are both baffled. The poor baby sounds like he's hacking up a lung when he coughs! His poor little chest just rattles and he sounds so congested, but as far as my ear can tell, they are mostly clear...but they do sound a little gunky. He coughs so hard that he cries afterward.
I'm not going to feed him again until we see Jen in the morning, we may be visiting with Dr. Prestridge this week and most likely another swallow study to see if something has changed. He's getting very fatigued with his feedings and not sure as to why. I have a feeling we will be seeing Dr. Murphy as well.
This evening has been horrible, he continues to cough and choke with no stimulation whatsoever, so I know the stridor is coming. All of this that Dr. Murphy didn't want to happen again.
The hard thing about it is that we will do appts and tests this week and Tuesday I have to give up control and hope that things are figured out before I have to come home Tuesday night to work Wednesday. Chris will stay here and I will have family in Omaha take him to therapy and then other family meet them halfway on the highway to get him home.
Not that he won't be in great hands, but it worries me because I can't control his intake and monitor his every move...moreso every breath and swallow. We are still on that fine line with a feeding tube and tonight I'm not very hopeful that it is compeletely out of the picture.
The next couple days will be the tell all!
Tuesday, December 07, 2010
Perfect Night
We are done with 4 treatments now. The plan is to keep doing the 3 day a week treatments until the end of the year to use as many of our days as we can. Then at the end of that we will take a break until Spring. His thickening will be whatever he is on at our lost treatment.
Monday night we had a BEAUTIFUL night!! No coughing, choking, congestion, drowning sounds...just sweet baby purrs of sleep. He hasn't slept that well in such a long time. I'm so excited!!! Ever mile that we drive up and down the road for therapy is worth it.
We finished our 4th treatment today and he did good. Jen was able to thin his liquids slightly and he did good with them. He is loving drinking milk out of an open cup. He doesn't want to waste his time with the sippy cups. Fine by me!
Three more weeks of therapy and the last 2 the big boys will be able to come with me and Jason will be with us the final one. Our next 10 days is very, very busy. With Christmas celebrations, birthday parties, therapy and work.
My biggest prayer is that my car starts in the morning...it's not working right now! Ugh!
Monday night we had a BEAUTIFUL night!! No coughing, choking, congestion, drowning sounds...just sweet baby purrs of sleep. He hasn't slept that well in such a long time. I'm so excited!!! Ever mile that we drive up and down the road for therapy is worth it.
We finished our 4th treatment today and he did good. Jen was able to thin his liquids slightly and he did good with them. He is loving drinking milk out of an open cup. He doesn't want to waste his time with the sippy cups. Fine by me!
Three more weeks of therapy and the last 2 the big boys will be able to come with me and Jason will be with us the final one. Our next 10 days is very, very busy. With Christmas celebrations, birthday parties, therapy and work.
My biggest prayer is that my car starts in the morning...it's not working right now! Ugh!
Monday, December 06, 2010
Like Us Better
We celebrated the Feast of St. Nick on Sunday night at our house. I usually put a dollar and a couple pieces of candy in their shoes. I had no candy, no dollars, but had a Wii game so I sat it next to their shoes.
Andrew ran in to tell me this a.m. and I said...that's not fair, we only got Candy...he goes...He likes us more! :)
Oh Drew!
Andrew ran in to tell me this a.m. and I said...that's not fair, we only got Candy...he goes...He likes us more! :)
Oh Drew!
Therapy
Well, we started therapy last week and it was really hard to get passed not protecting the airway. That's what I was telling Jen, our awesome therapist, that as a nurse we are taught to protect the airway. Jen told me to bear with her and she would help get him better!
Chris had 2 treatments last week and I need to correct...he is not getting E stim, he is getting VitalStim. Jen puts electrodes on his neck and under his chin and then feeds him which is supposed to help retrain his tongue, neck and throat muscles to work properly. Eventually she will start to thin his liquids and see how it goes.
After 2 treatments Chris did not choke, or cough in regards to feeding for 72 hours and then we had periodically periods of coughing. He was ready for a treatment though by the time we got to Omaha. He did good, but ripped the electrodes off a couple times. He is loving drinking milk out of a cup!
Initially Jen had said 8 treatments, but she clarified that today that he will get treatments until he can drink thin liquids again. So...down we will come until Jen says we are good!
The bigger boys are surviving and excited that they get to come down this weekend for Christmas with Grandma and Papa K. They don't know they will get to come down for 3 days with me!! :) I will surprise them I think. We will do that for 2 weeks. They will be so excited!! :)
Chris had 2 treatments last week and I need to correct...he is not getting E stim, he is getting VitalStim. Jen puts electrodes on his neck and under his chin and then feeds him which is supposed to help retrain his tongue, neck and throat muscles to work properly. Eventually she will start to thin his liquids and see how it goes.
After 2 treatments Chris did not choke, or cough in regards to feeding for 72 hours and then we had periodically periods of coughing. He was ready for a treatment though by the time we got to Omaha. He did good, but ripped the electrodes off a couple times. He is loving drinking milk out of a cup!
Initially Jen had said 8 treatments, but she clarified that today that he will get treatments until he can drink thin liquids again. So...down we will come until Jen says we are good!
The bigger boys are surviving and excited that they get to come down this weekend for Christmas with Grandma and Papa K. They don't know they will get to come down for 3 days with me!! :) I will surprise them I think. We will do that for 2 weeks. They will be so excited!! :)
Saturday, November 27, 2010
Long Over Due
I should have had this post written days ago, but I feel like I've been driving in circles...which I kind of have been.
This weekend was exciting for our house...I baby that started crawling on all fours and pulling himself up to his feet more and more. He also started saying Mom. He would be playing in the living room and I would be in the back bedroom and I would here...Mom, Mom, Mom...the whole way down the hall on the way to see me! :)
Monday we hit Omaha for another swallow study, but this time at Bergan. I was introduced to a very vibrant Speech Therapist name nothing better than...Jen! :) She was so good with Chris. We did the test and sure enough...same results, but WAY different approach.
The test showed that his tongue was not working properly, meaning it was not "working" right. He is also pocketing things above his larynx, the part that protects his trachea and prevents aspiration. His is sluggish and therefore causing him to aspirate. The heavier foods do better for him.
Jen sat down with me...actually sat down on the floor with Chris...and talked things out. Her option was making the bottles thicker, giving his last bottle at 5 and then a bowel of cereal at bedtime and to try E stim therapy. Note: I didn't say feeding tube! :)
Our plan was to wait and see what Pulmonology said and go from there.
So...Pulmonology...Dr. Murphy said that the chest xrays look good and show no signs of injury to his lungs yet. His concern...of course...was to protect his lungs. He was willing to try the therapy and changes that Jen had set out, but said that if he has any more choking incidences he gets a feeding tube. We talked about an NG vs one that would go in to his belly (G button) and the G button would not be out. He said that if there is reflux that the G button is the way to go., but that was just talk. He said to let him know how he was doing on Friday.
So Jen suggested that we start the E Stim therapy today to help show improvement to ward off the feeding tube. Away we went at 1 p.m. She hooked him up, put on a pink hat to hold the electrodes on and we got a 45 min therapy out of him. So it was good. The downfall is that we have to stay another day in Omaha to repeat therapy tomorrow. Then it will be every Monday through Wednesday until...not sure on that answer yet.
This E Stim therapy is where they put electrodes under his chin and on his neck and it gets his muscles to contract and relax in patterns. During this they feed him and it is supposed to help train his tongue and throat to work better. We will do 6-8 treatments then re-evaluate.
I'm writing this tired so I apologize for anything that is unclear. I will probably have to re-read it tomorrow and write an addendum! :) But good things so far. The only bad thing is lots of travling, but we will get through it. Just pray for good weather for awhile.
This weekend was exciting for our house...I baby that started crawling on all fours and pulling himself up to his feet more and more. He also started saying Mom. He would be playing in the living room and I would be in the back bedroom and I would here...Mom, Mom, Mom...the whole way down the hall on the way to see me! :)
Monday we hit Omaha for another swallow study, but this time at Bergan. I was introduced to a very vibrant Speech Therapist name nothing better than...Jen! :) She was so good with Chris. We did the test and sure enough...same results, but WAY different approach.
The test showed that his tongue was not working properly, meaning it was not "working" right. He is also pocketing things above his larynx, the part that protects his trachea and prevents aspiration. His is sluggish and therefore causing him to aspirate. The heavier foods do better for him.
Jen sat down with me...actually sat down on the floor with Chris...and talked things out. Her option was making the bottles thicker, giving his last bottle at 5 and then a bowel of cereal at bedtime and to try E stim therapy. Note: I didn't say feeding tube! :)
Our plan was to wait and see what Pulmonology said and go from there.
So...Pulmonology...Dr. Murphy said that the chest xrays look good and show no signs of injury to his lungs yet. His concern...of course...was to protect his lungs. He was willing to try the therapy and changes that Jen had set out, but said that if he has any more choking incidences he gets a feeding tube. We talked about an NG vs one that would go in to his belly (G button) and the G button would not be out. He said that if there is reflux that the G button is the way to go., but that was just talk. He said to let him know how he was doing on Friday.
So Jen suggested that we start the E Stim therapy today to help show improvement to ward off the feeding tube. Away we went at 1 p.m. She hooked him up, put on a pink hat to hold the electrodes on and we got a 45 min therapy out of him. So it was good. The downfall is that we have to stay another day in Omaha to repeat therapy tomorrow. Then it will be every Monday through Wednesday until...not sure on that answer yet.
This E Stim therapy is where they put electrodes under his chin and on his neck and it gets his muscles to contract and relax in patterns. During this they feed him and it is supposed to help train his tongue and throat to work better. We will do 6-8 treatments then re-evaluate.
I'm writing this tired so I apologize for anything that is unclear. I will probably have to re-read it tomorrow and write an addendum! :) But good things so far. The only bad thing is lots of travling, but we will get through it. Just pray for good weather for awhile.
Tuesday, November 23, 2010
Repeat
I apologize. We came home from Omaha and I feel like I have been running in circles ever since.
We left Omaha with no feeding tube. The Dr. at Children's refused to put it in and Dr. Prestridge just said to call her on Monday and we would regroup. So, I came home with an aspirating baby. We were to put thick it (thickening agent) in his bottle to honey consistency. Once we got home however, he refused to take it. One feeding after fighting him took 90 minutes. He still sounded horrible. When he did drink he was choking and coughing and on Monday night it sounded like he was drowning.
I talked with Dr. Prestridge on Monday and she sent me in to Doc this a.m. She said it was okay to switch his bottles back to rice cereal instead of the thick it. Christopher loved this!
We pow wowed with Doc this a.m. and I shared all my frustrations and said that I'm okay if we don't put a feeding tube in him...beyond okay...but I don't like listening to my child sound like he's drowning after he drinks a bottle. He said that he and Dr. Prestridge were both baffled and he would chat with her and see what she said.
Dr. P called this afternoon and we are back to Omaha next week for Pulmonology and another swallow study, but at Bergan. We will see what that brings.
He hasn't been himself since we came home. We still have our smiles and our silly faces, but we are attached to Mom's side or anybody that will hold him. They gave him milk of magnesia Saturday in the hospital and he is still having loose stools. The poor kid smells like something died in him, but he may have caught a little stomach bug as well.
One of the highlights of the weekend, if I haven't shared before, is that we made it up to our feet. He managed it in his crib in the hospital and has a couple times since, but we don't do as well with the couch.
Sunday night I had to share the exciting MRI news with Eric, the Physical Therapist that has been working with him. He was pleased.
In speaking with Doc this a.m. it sounds like both he and Dr. P aren't sure as to what is going on. We may get a trip back to the Neurologist to find out why we are having all these low muscle tone problems. The thing that doesn't make sense, doc said, is that it is both smooth muscle (GI) and skeletal muscle involved.
I better put a plugged in for the older boys as well. They are doing so good. Andrew, believe it or not is ready for a break from school. I think he is liking helping his uncle Tim and Papa and finding more fun in that.
Matt is still silly. He's working with Mariclaire three days a week and doing awesome. It amazes me what comes out of his mouth. He has some pretty funny lines. This weekend when I had to call and tell the boys that I was staying in Omaha with Chris, Andrew had a little meltdown with it, but then Matt got on the phone long enough to say..."I'm okay with it mom." Then he was off to his next endeavor.
We just sit and wait until Monday and then back down the highway we go! Looking forward to it though, turning it in to a Christmas Shopping Extravaganza with my sister and Tim's girlfriend! SUPER excited! :)
We left Omaha with no feeding tube. The Dr. at Children's refused to put it in and Dr. Prestridge just said to call her on Monday and we would regroup. So, I came home with an aspirating baby. We were to put thick it (thickening agent) in his bottle to honey consistency. Once we got home however, he refused to take it. One feeding after fighting him took 90 minutes. He still sounded horrible. When he did drink he was choking and coughing and on Monday night it sounded like he was drowning.
I talked with Dr. Prestridge on Monday and she sent me in to Doc this a.m. She said it was okay to switch his bottles back to rice cereal instead of the thick it. Christopher loved this!
We pow wowed with Doc this a.m. and I shared all my frustrations and said that I'm okay if we don't put a feeding tube in him...beyond okay...but I don't like listening to my child sound like he's drowning after he drinks a bottle. He said that he and Dr. Prestridge were both baffled and he would chat with her and see what she said.
Dr. P called this afternoon and we are back to Omaha next week for Pulmonology and another swallow study, but at Bergan. We will see what that brings.
He hasn't been himself since we came home. We still have our smiles and our silly faces, but we are attached to Mom's side or anybody that will hold him. They gave him milk of magnesia Saturday in the hospital and he is still having loose stools. The poor kid smells like something died in him, but he may have caught a little stomach bug as well.
One of the highlights of the weekend, if I haven't shared before, is that we made it up to our feet. He managed it in his crib in the hospital and has a couple times since, but we don't do as well with the couch.
Sunday night I had to share the exciting MRI news with Eric, the Physical Therapist that has been working with him. He was pleased.
In speaking with Doc this a.m. it sounds like both he and Dr. P aren't sure as to what is going on. We may get a trip back to the Neurologist to find out why we are having all these low muscle tone problems. The thing that doesn't make sense, doc said, is that it is both smooth muscle (GI) and skeletal muscle involved.
I better put a plugged in for the older boys as well. They are doing so good. Andrew, believe it or not is ready for a break from school. I think he is liking helping his uncle Tim and Papa and finding more fun in that.
Matt is still silly. He's working with Mariclaire three days a week and doing awesome. It amazes me what comes out of his mouth. He has some pretty funny lines. This weekend when I had to call and tell the boys that I was staying in Omaha with Chris, Andrew had a little meltdown with it, but then Matt got on the phone long enough to say..."I'm okay with it mom." Then he was off to his next endeavor.
We just sit and wait until Monday and then back down the highway we go! Looking forward to it though, turning it in to a Christmas Shopping Extravaganza with my sister and Tim's girlfriend! SUPER excited! :)
Saturday, November 20, 2010
Oops
I feel so horrible. My Aunt Jeanie reminded me that we have a lot that has turned out great and I didn't mean to sound ungrateful. The way things are, are SO much better than they could be!! We could be looking at spinal surgery or shunt placement or lots of other things. A feeding tube is the LEAST of it!
Not sure what the plan is today. We hope to find out soon! Again thanks for all the thoughts and prayers...and for my Aunt Jeanie pointing out that it sounded bad!!! I feel bad.
Not sure what the plan is today. We hope to find out soon! Again thanks for all the thoughts and prayers...and for my Aunt Jeanie pointing out that it sounded bad!!! I feel bad.
Failure
I have good news and I have not so hot news.
The GREAT news is...the MRI is NEGATIVE!!! No tethered cord, no hydrocephalus, just perfect baby boy spine and large head!! :) I'm sitting hear crying out of joy because I've had myself mentally prepared for the worst. Tonight in his crib, he pulled him self to his feet and was gleaming from ear to ear because he knew what he did! Once he was up, he couldn't maneuver his legs under him so he quickly fell, but HELLO! How awesome! I can't remember if I was on the phone with my Mom or MC, but I had to stop to cheer! :)
The not so hot news...the barium swallow did not go good at all today. They start the study off with different things covered in barium or mixed with barium...yummy huh? Made me gag just watching. Anyway, baby food went good...crackers good....thin liquids, minor fail...nectar thick liquids, minor fail...honey thick liquids, major fail. He took a total of an ounce and they quit because it was that evident that it was not going good.
Not gonna lie, I broke down immediately, was it the end of the world...no, but my concerns had been confirmed FINALLY! So, Mary (ST) and Tina (OT) (the same 2 I was frustrated with Wednesday) did awesome. They reassured me that there were steps to take now and that they were contacting Dr. Prestridge before they would let me leave.
Mary spoke with Dr. P and stated her concerns and recommendations and then Dr. P spoke with me. The options were placing a feeding tube down his nose and feeding him that way or not changing anything and see what happens. After discussing with her the constant antibiotic use and the fact that I feel it is progressively getting worse and that we are 3 hours away (not that Doc couldn't handle it) should this continue to get worse and something serious happens, the decision was made to place a nasogastric tube (a tube through his nose to his belly to feed him).
She said she wanted to talk with Dr. Kronberg and would call me back. She called me back and said that he was going to be admitted to Children's for NG placement. Away to the admitting desk we went.
We hit the floor and the hospitalist finally came and talked to us, went and looked some things up and then came back to discuss the plan of care. He said that at this time, he didn't feel the the need to place the feeding tube. According to the report, it was a "mild" aspiration and besides...he'd probably pull it out. I voiced my concerns and when he blew them off...I quit listening. All I could think about was that I could be home with my other boys and why the h*** were we here then! My other thought...Dr. P did call me from her cell...could I reach her at 8:30 p.m.? I didn't call her!
My thoughts since have included...whether a patient is 11 months (which he is today), 11 years or 80 years...the risk of pulling out the NG is the same. We have adult patient's remove them all the time! My other thought...mild or not he is STILL ASPIRATING!!! Why are we okay with the injury to his lungs? Seriously? I mean I have 2 other boys with lung problems, why not make it 3 right? WTH? Why don't we want to try to PREVENT this?
Do I want to put a tube down my baby's nose and feed him through it?...NO! Do I want him to risk having chronic lung problems when it could have been prevented...uh duh. It scares me to know what is happening when he drinks his bottle. I mean, he drinks it and right away you can hear him start to sound wet.
I spoke with Jess about this and the nurses working with him, all kind of agree with me...Why are we changing the plan of care, after admission? I guess I will just find out in the a.m.
What a trooper though through this week. He's started making a new face, it's this surprised look and then after he gives us a big cheeser grin!
I miss the big boys. I haven't seen them since Tuesday at 8 a.m. When I talked to Matt tonight he said...I'm okay with you staying Mom. I didn't even have to ask. Andrew on the other hand was bothered by it. I'm glad it's a holiday week next week and will have time with them!
My mother in law reminded me tonight that it was 1 year ago this week that I went into labor with Chris and was in the hospital in Omaha myself. I'm really starting to not like Thanksgiving!
The GREAT news is...the MRI is NEGATIVE!!! No tethered cord, no hydrocephalus, just perfect baby boy spine and large head!! :) I'm sitting hear crying out of joy because I've had myself mentally prepared for the worst. Tonight in his crib, he pulled him self to his feet and was gleaming from ear to ear because he knew what he did! Once he was up, he couldn't maneuver his legs under him so he quickly fell, but HELLO! How awesome! I can't remember if I was on the phone with my Mom or MC, but I had to stop to cheer! :)
The not so hot news...the barium swallow did not go good at all today. They start the study off with different things covered in barium or mixed with barium...yummy huh? Made me gag just watching. Anyway, baby food went good...crackers good....thin liquids, minor fail...nectar thick liquids, minor fail...honey thick liquids, major fail. He took a total of an ounce and they quit because it was that evident that it was not going good.
Not gonna lie, I broke down immediately, was it the end of the world...no, but my concerns had been confirmed FINALLY! So, Mary (ST) and Tina (OT) (the same 2 I was frustrated with Wednesday) did awesome. They reassured me that there were steps to take now and that they were contacting Dr. Prestridge before they would let me leave.
Mary spoke with Dr. P and stated her concerns and recommendations and then Dr. P spoke with me. The options were placing a feeding tube down his nose and feeding him that way or not changing anything and see what happens. After discussing with her the constant antibiotic use and the fact that I feel it is progressively getting worse and that we are 3 hours away (not that Doc couldn't handle it) should this continue to get worse and something serious happens, the decision was made to place a nasogastric tube (a tube through his nose to his belly to feed him).
She said she wanted to talk with Dr. Kronberg and would call me back. She called me back and said that he was going to be admitted to Children's for NG placement. Away to the admitting desk we went.
We hit the floor and the hospitalist finally came and talked to us, went and looked some things up and then came back to discuss the plan of care. He said that at this time, he didn't feel the the need to place the feeding tube. According to the report, it was a "mild" aspiration and besides...he'd probably pull it out. I voiced my concerns and when he blew them off...I quit listening. All I could think about was that I could be home with my other boys and why the h*** were we here then! My other thought...Dr. P did call me from her cell...could I reach her at 8:30 p.m.? I didn't call her!
My thoughts since have included...whether a patient is 11 months (which he is today), 11 years or 80 years...the risk of pulling out the NG is the same. We have adult patient's remove them all the time! My other thought...mild or not he is STILL ASPIRATING!!! Why are we okay with the injury to his lungs? Seriously? I mean I have 2 other boys with lung problems, why not make it 3 right? WTH? Why don't we want to try to PREVENT this?
Do I want to put a tube down my baby's nose and feed him through it?...NO! Do I want him to risk having chronic lung problems when it could have been prevented...uh duh. It scares me to know what is happening when he drinks his bottle. I mean, he drinks it and right away you can hear him start to sound wet.
I spoke with Jess about this and the nurses working with him, all kind of agree with me...Why are we changing the plan of care, after admission? I guess I will just find out in the a.m.
What a trooper though through this week. He's started making a new face, it's this surprised look and then after he gives us a big cheeser grin!
I miss the big boys. I haven't seen them since Tuesday at 8 a.m. When I talked to Matt tonight he said...I'm okay with you staying Mom. I didn't even have to ask. Andrew on the other hand was bothered by it. I'm glad it's a holiday week next week and will have time with them!
My mother in law reminded me tonight that it was 1 year ago this week that I went into labor with Chris and was in the hospital in Omaha myself. I'm really starting to not like Thanksgiving!
Thursday, November 18, 2010
Testing
We are in Omaha and having our testing done this week.
We had our swallow study done yesterday and I wasn't impressed. They stared at him eating a thickened bottle...which won't tell them anything....then said keep doing what you're doing. I was like seriously? Maybe they got something out of it but it was not conveyed to this mother. Then they said...we will see what Friday brings.
Today started off early as we had to be at the hospital by 7:30. They got him going and he played in the toy room, then played ball and around 9:15 they took him from me. He rode the bed back like a champ. Didn't even phase him.
Dr. Prestridge stopped in before the procedure and asked if we had any questions and I addressed his bowel issue and she said she'd check on it while he was out. She returned around 11:40 and said that everything in the EGD looked good. No signs of reflux and no apparent concerns. They did a biopsy, which is standard and she said that it may come back with some allergy cells. That darn "a" word may still sneak up on us!
We won't have any MRI results for a few days. The nurse in the CARES unit did encourage me to call tomorrow before we left town tomorrow. I hope that doesn't mean anything. So, that will be my first call.
We came back to the room and we both passed out immediately until about 5. Gotta love the 3 hour nap. He played like a maniac tonight and then 10 min later was out cold!
I miss my big boys. I can't wait to get home and hug them. I may have to plan something special for tomorrow night.
Thanks for all the prayers. We will get through whatever God has in store for us. I would however, take a hypermobility/low tone diagnosis however! :)
We had our swallow study done yesterday and I wasn't impressed. They stared at him eating a thickened bottle...which won't tell them anything....then said keep doing what you're doing. I was like seriously? Maybe they got something out of it but it was not conveyed to this mother. Then they said...we will see what Friday brings.
Today started off early as we had to be at the hospital by 7:30. They got him going and he played in the toy room, then played ball and around 9:15 they took him from me. He rode the bed back like a champ. Didn't even phase him.
Dr. Prestridge stopped in before the procedure and asked if we had any questions and I addressed his bowel issue and she said she'd check on it while he was out. She returned around 11:40 and said that everything in the EGD looked good. No signs of reflux and no apparent concerns. They did a biopsy, which is standard and she said that it may come back with some allergy cells. That darn "a" word may still sneak up on us!
We won't have any MRI results for a few days. The nurse in the CARES unit did encourage me to call tomorrow before we left town tomorrow. I hope that doesn't mean anything. So, that will be my first call.
We came back to the room and we both passed out immediately until about 5. Gotta love the 3 hour nap. He played like a maniac tonight and then 10 min later was out cold!
I miss my big boys. I can't wait to get home and hug them. I may have to plan something special for tomorrow night.
Thanks for all the prayers. We will get through whatever God has in store for us. I would however, take a hypermobility/low tone diagnosis however! :)
Monday, November 15, 2010
Reminding Myself
Last night I was grilling burgers and wasn't paying attention when I went to put the pepper on and opened the wrong in. Needless to say, one burger got a pepper bath. Matt was near me and I told him it was Andrew's burger and not to tell.
He said..."Don't worry mom, I won't."
It wasn't 20 min later Andrew comes in and says..."Mom why'd you put too much pepper on my burger."
When I went out to check on the burgers I hollared at Matt that he was a traitor! :) He said, I didn't tell Andrew. I could hear Jason laughing. Jason tells me that Matthew didn't.
Jason went on to explain that Matthew said outloud that I had put too much pepper on Andrew's burger and when Jason said something to him, Matthew told him that he didn't tell Andrew. He reminded himself OUTLOUD to not tell Andrew!
I don't know where this kid comes up with this stuff!
He said..."Don't worry mom, I won't."
It wasn't 20 min later Andrew comes in and says..."Mom why'd you put too much pepper on my burger."
When I went out to check on the burgers I hollared at Matt that he was a traitor! :) He said, I didn't tell Andrew. I could hear Jason laughing. Jason tells me that Matthew didn't.
Jason went on to explain that Matthew said outloud that I had put too much pepper on Andrew's burger and when Jason said something to him, Matthew told him that he didn't tell Andrew. He reminded himself OUTLOUD to not tell Andrew!
I don't know where this kid comes up with this stuff!
Long Week
I've spent the last 6 hours doing laundry, picking up, cleaning, rocking a baby, making arrangements and packing for the next 4 days. We have our tests this week and Jason reminded me to not pack for a year, but I have to be prepared.
We did tubes last Tuesday and Chris did amazing! He had no problem with the sedation, but it helped he only had to be down for about 20 min. When he came back to me though he looked so sad because he woke up without me. He quickly recovered. He's seemed to be tolerating the tubes well.
Friday night was a long night and he had a rough night with coughing and choking. He had a period of horrible breathing for about an hour. I sent he and Jason to the doc on Saturday morning and his lung sounds were clear. I am just super nervous for this week.
The weekend brought no improvement and actually I had to start making his bottles thicker. He's on so many meds. I'm not a medicator, but am doing it just to ward off evil spirits for this week. When I talked to Doc on Sunday, we both agreed that we are between a rock and a hard spot right now. We've waited so long for this MRI. We don't want it canceled because of his health, but his health isn't going to improve until we get answers from the MRI. We will see. It makes it even more nervous for the swallow study.
We will have the 2 swallow studies this week, the MRI and the EGD. I'm hoping that's it.
I'm worried about leaving the big boys, but they are in good hands and it's only for a couple days. The down side is we are to Grand Island Monday for a follow up and then the following week we are on to Pulmonology.
We did tubes last Tuesday and Chris did amazing! He had no problem with the sedation, but it helped he only had to be down for about 20 min. When he came back to me though he looked so sad because he woke up without me. He quickly recovered. He's seemed to be tolerating the tubes well.
Friday night was a long night and he had a rough night with coughing and choking. He had a period of horrible breathing for about an hour. I sent he and Jason to the doc on Saturday morning and his lung sounds were clear. I am just super nervous for this week.
The weekend brought no improvement and actually I had to start making his bottles thicker. He's on so many meds. I'm not a medicator, but am doing it just to ward off evil spirits for this week. When I talked to Doc on Sunday, we both agreed that we are between a rock and a hard spot right now. We've waited so long for this MRI. We don't want it canceled because of his health, but his health isn't going to improve until we get answers from the MRI. We will see. It makes it even more nervous for the swallow study.
We will have the 2 swallow studies this week, the MRI and the EGD. I'm hoping that's it.
I'm worried about leaving the big boys, but they are in good hands and it's only for a couple days. The down side is we are to Grand Island Monday for a follow up and then the following week we are on to Pulmonology.
Monday, November 08, 2010
Normal
I tell ya...I wish I could bottle everything that comes out of Matt's mouth.
Andrew is being very dramatic tonight, acting like he's sick and that he's overly worked. By the way, he hasn't done anything since he got home from school at noon. In his defense however, he is having breathing troubles today.
Anyway, Andrew finished his breathing treatment and then when I said to head outside, Andrew fell on the floor and pretended to be to sleep.
Matt's comment..."Act normal."
I still think it's hilarious! :)
Andrew is being very dramatic tonight, acting like he's sick and that he's overly worked. By the way, he hasn't done anything since he got home from school at noon. In his defense however, he is having breathing troubles today.
Anyway, Andrew finished his breathing treatment and then when I said to head outside, Andrew fell on the floor and pretended to be to sleep.
Matt's comment..."Act normal."
I still think it's hilarious! :)
Tubes Tuesday
I'm just now getting this down.
We were to have tubes put in our ears here on Thursday, but after I got to talking to one of the nurses and they heard everything we were doing/finding out, a red flag arose...Suprise suprise. She talked to the anesthetist and he said that he wouldn't feel comfortable because of his dysphagia there was a chance they wouldn't get him off the vent right away. He wanted him to be at a facility where this could be handled should he need it. He talked to Dr. Nabity and through the shear grace of his surgery scheduler, Carol, we are placing tubes tomorrow morning, super early!
I'm not gonna lie...I was very upset at first to think that we may have to prolong this. Dr. K had said that if we didn't get the tubes in and a source of infection cleared up, there could be chance that the MRI would be canceled and this Mama would be devastated if that happened.
The following week is the MRI date and we found out that Dr. Prestridge will be doing an EGD that same day, not sure if I shared that.
We were to have tubes put in our ears here on Thursday, but after I got to talking to one of the nurses and they heard everything we were doing/finding out, a red flag arose...Suprise suprise. She talked to the anesthetist and he said that he wouldn't feel comfortable because of his dysphagia there was a chance they wouldn't get him off the vent right away. He wanted him to be at a facility where this could be handled should he need it. He talked to Dr. Nabity and through the shear grace of his surgery scheduler, Carol, we are placing tubes tomorrow morning, super early!
I'm not gonna lie...I was very upset at first to think that we may have to prolong this. Dr. K had said that if we didn't get the tubes in and a source of infection cleared up, there could be chance that the MRI would be canceled and this Mama would be devastated if that happened.
The following week is the MRI date and we found out that Dr. Prestridge will be doing an EGD that same day, not sure if I shared that.
Thursday, November 04, 2010
Demons
Yesterday was a long day. I was on such a HIGH from Tuesday, but my sister...no offense Red...squashed and got me thinking about a disorder that it COULD be. No diagnosis yet, but the more I talk to physicians, the harder it is to not worry about what we will find in the MRI.
We were to see Dr. Murphy yesterday, but he had an emergency or something so we will see him Nov. 30. We also stopped in to see our good friend Dr. Kronberg. I know only a couple know him, but I love how excited he gets over seeing if the children are meeting their milestones. It's like they are his children/grandchildren every time.
When he entered the room he checked if Chris would recognize his name, give him a social smile and follow what he was doing...yes, yes and yes! So then Dr. K got excited and was like..."That's so GOOD!" He checked his hearing, fine motor skills and some of his reflexes. Again, check, check and check! He was super excited again. Then he listened to him and confirmed that again...another ear infection, and that his lungs sounded like crap. He also affirmed my concern of getting him better so this MRI doesn't get canceled.
To prevent that we have to be on an antibiotic until after the MRI, then also Prilosec because in case there is some reflux, he doesn't want to risk him aspirating it and him getting sick, then also neb treatments.
He also said after he looked him over, that before coming in to the room he was nervous as to what he was going to find, but after seeing him he was reassured. He also told me that we need to move to Omaha. I laughed and said funny...but he said he was serious this time. He tells us this evertime he sees us. I stated that it wasn't an option and he said that I had to guarentee him then that we would make sure we got to all of our appointments. he said coming in to the winter months, we have to guarentee that we will make it to all our appointements. he stated that if there is an impending storm or A snowflake flies to hit the highway should we have an upcoming appointment. I wasn't thinking straight enought to ask why.
We had to do a chest xray and xrays of his hips. Not sure why the hips, but they both turned out okay! YAY! He did say however, that he has lots of stool present in him. This means that although he has a bowel movment every day, he is not emptying. I asked why and Dr. K said not for sure, but it is another sign pointing to a tethered cord.
Dr. Nabity's office called yesterday too and we will put tubes in next Thursday here in O'Neill. This will help us get better for the MRI. I spoke with Dr. Prestridge's office today and he will have an EGD (upper scope) on the 18th after the MRI at 11.
We had PT today and Eric was very happy with our progress over the last 2 weeks. He's getting very daring and can't get to standing yet, but when you stand him up, he tries to one hand it and can stand longer and longer.
I was lucky last night when I got home that my best friend...Big Matt..came up and was here to hang out with me. I was just kind of down. I know none of this is life threatening and things could totally be worse, but it goes back to the thinking that you have this normal healthy baby and it's all kind of falling apart. I just keep reassuring myself...in the words of Grandpa Shoemaker...everything will be just fine. And like someone else said...I need to stop dreaming of demons...but it's hard.
We were to see Dr. Murphy yesterday, but he had an emergency or something so we will see him Nov. 30. We also stopped in to see our good friend Dr. Kronberg. I know only a couple know him, but I love how excited he gets over seeing if the children are meeting their milestones. It's like they are his children/grandchildren every time.
When he entered the room he checked if Chris would recognize his name, give him a social smile and follow what he was doing...yes, yes and yes! So then Dr. K got excited and was like..."That's so GOOD!" He checked his hearing, fine motor skills and some of his reflexes. Again, check, check and check! He was super excited again. Then he listened to him and confirmed that again...another ear infection, and that his lungs sounded like crap. He also affirmed my concern of getting him better so this MRI doesn't get canceled.
To prevent that we have to be on an antibiotic until after the MRI, then also Prilosec because in case there is some reflux, he doesn't want to risk him aspirating it and him getting sick, then also neb treatments.
He also said after he looked him over, that before coming in to the room he was nervous as to what he was going to find, but after seeing him he was reassured. He also told me that we need to move to Omaha. I laughed and said funny...but he said he was serious this time. He tells us this evertime he sees us. I stated that it wasn't an option and he said that I had to guarentee him then that we would make sure we got to all of our appointments. he said coming in to the winter months, we have to guarentee that we will make it to all our appointements. he stated that if there is an impending storm or A snowflake flies to hit the highway should we have an upcoming appointment. I wasn't thinking straight enought to ask why.
We had to do a chest xray and xrays of his hips. Not sure why the hips, but they both turned out okay! YAY! He did say however, that he has lots of stool present in him. This means that although he has a bowel movment every day, he is not emptying. I asked why and Dr. K said not for sure, but it is another sign pointing to a tethered cord.
Dr. Nabity's office called yesterday too and we will put tubes in next Thursday here in O'Neill. This will help us get better for the MRI. I spoke with Dr. Prestridge's office today and he will have an EGD (upper scope) on the 18th after the MRI at 11.
We had PT today and Eric was very happy with our progress over the last 2 weeks. He's getting very daring and can't get to standing yet, but when you stand him up, he tries to one hand it and can stand longer and longer.
I was lucky last night when I got home that my best friend...Big Matt..came up and was here to hang out with me. I was just kind of down. I know none of this is life threatening and things could totally be worse, but it goes back to the thinking that you have this normal healthy baby and it's all kind of falling apart. I just keep reassuring myself...in the words of Grandpa Shoemaker...everything will be just fine. And like someone else said...I need to stop dreaming of demons...but it's hard.
Tuesday, November 02, 2010
answers...Answers...ANSWERS...YAY!!!
Today was our much anticipated GI (gastrointestinal) appointment. I'm not gonna lie...was a little concerned when a med student came in first, but gave him the benefit of the doubt, so we ran through the gamut of what has been happening. He was so good with him. Then Dr. Prestridge came in and at first was in the whole...I'm gonna teach this kid something mode, but soon relaxed and confirmed everything that I was having concerns about!
First the choking...She asked how vocal he was and I said he says a couple words, but not very often and doesn't chatter much. But then I told her that I attributed it to his ears because we've been having problems and explained that Matt had the same issues. Then she asked about other foods and I said...no just his bottle. She then explained that the muscles that you use to talk are the same muscles you use to swallow. I'm sure I learned that in nursing school, but I filed that one a way for some day far far away! :)
Second hard stools...I didn't even know that she would touch on this today. Yes, I know she is GI, but i was focusing on the choking. She then asked about the MRI and why we were looking at the spine...stated that they were questioning a tethered cord or tumor. I then learned that if the anus will pucker then you can usually rule out a tethered cord, but if it doesn't, it is still a good question. She looked at that and his was slow but it puckered. So she said she would be intereseted to see what the MRI would bring.
Plan...so the plan is to keep the MRI. Dr. Prestridge is anxious to see what both the head and spine tell us. Not gonna lie...this makes me a little nervous, but it will be good. We have to thicken his milk with rice cereal and then possibly do a swallow study Nov. 17. Find out that for sure tomorrow. Then if she can arrange it, she wants to do an upper scope the day of his MRI to make sure there is nothing major.
I like this progress. I feel like we finally have a path to follow and are heading in a direction rather than just being in limbo. We drank our first thickened bottle tonight with no choking. I was in tears I was so excited!!!
Now, just 2 more weeks til the MRI. I'm so emotionally drained tonight.
First the choking...She asked how vocal he was and I said he says a couple words, but not very often and doesn't chatter much. But then I told her that I attributed it to his ears because we've been having problems and explained that Matt had the same issues. Then she asked about other foods and I said...no just his bottle. She then explained that the muscles that you use to talk are the same muscles you use to swallow. I'm sure I learned that in nursing school, but I filed that one a way for some day far far away! :)
Second hard stools...I didn't even know that she would touch on this today. Yes, I know she is GI, but i was focusing on the choking. She then asked about the MRI and why we were looking at the spine...stated that they were questioning a tethered cord or tumor. I then learned that if the anus will pucker then you can usually rule out a tethered cord, but if it doesn't, it is still a good question. She looked at that and his was slow but it puckered. So she said she would be intereseted to see what the MRI would bring.
Plan...so the plan is to keep the MRI. Dr. Prestridge is anxious to see what both the head and spine tell us. Not gonna lie...this makes me a little nervous, but it will be good. We have to thicken his milk with rice cereal and then possibly do a swallow study Nov. 17. Find out that for sure tomorrow. Then if she can arrange it, she wants to do an upper scope the day of his MRI to make sure there is nothing major.
I like this progress. I feel like we finally have a path to follow and are heading in a direction rather than just being in limbo. We drank our first thickened bottle tonight with no choking. I was in tears I was so excited!!!
Now, just 2 more weeks til the MRI. I'm so emotionally drained tonight.
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