Well, if you read my last post on Jordan's swallow study, it sounded promising that she had lots of strong swallows before her aspiration. Over the past several days I have had to, again, face the reality of a child that cannot swallow. Jordan has become increasingly sick and I believe it is 100% due to the aspiration. Although, there is no way to prove that her awful sounding gunky cough is not a virus or bacterial infection caused by another sick kid, I just know the real reason that she sounds the way she does.
I have spent the past several months adamant that Jordan begin receiving feeding therapy and that we will NOT stop until she can eat. I want more than anything to provide my daughter the same opportunity 99% of the human population gets to experience. I want her to participate in the physical, emotional, and social experience that is eating. I want her to taste various tastes. I want her to feel various textures. I want her to sit with our family at dinner. I want to be able to go out to eat as a family. I want!
What I am trying to determine is if I am asking too much. Is it too much to assume that eating is the best thing for her? Is it wrong for me to put my own desires above her health? Is it really the right choice to put her into a feeding program when her little body might not be able to handle the consequences?
I have spent the past day reconsidering.
Reconsidering if feeding therapy is really the right choice.
Reconsidering if it is worth my daughter's well being to pursue something that I want for her.
Reconsidering if I have been chasing a dream that will never become a reality.
I know that I have to rely on God for my strength right now. I am trying not to give up, but I also need to stay grounded in reality. I will be calling her feeding therapist today and getting her opinion. I will be praying. I will by holding my sick baby and pouring out my love.
Monday, March 26, 2012
Friday, March 23, 2012
Video Swallow Study
When we were at Jordan's video swallow study yesterday I was thinking, "I wonder how many of these we have had done??" I am guessing this was about the 7th, but I'm not sure. I may just have to look into this!
Jordan was so excited about yesterday! Every day...all day...every night...Jordan is asking what today and tomorrow are. She uses the phrases "school day," "Julie day," "church day," "home day." It can be very annoying to be asked the same question about 40-50 times a day, but we think it is helpful in her organizing her thoughts and anticipating what to expect. She does best with routine and does not always handle changes with schedule or routine easily.
Wednesday night she was asking about "tomorrow." I was trying to come up with the easiest way to explain that she was going to have a swallow study so I told her she would be having some tests and they were going to take pictures of her eating food with her mouth. I used the word "therapist" and yet, she didn't quite understand (even though she sees several therapists for speech and OT every week, she knows them by name, not profession). I ended up telling her she was going to a doctor because I knew she would understand.
After that, "doctor day" was the phrase she kept using to plan for the day. When we arrived at Mary Free Bed, we waited in the waiting room for a while and when Ellen came to get us, Jordan referred to her as "doctor." Ellen found it quite amusing that Jordan kept calling her "doctor." Oh well, at least Jordan understood what was going on.
The procedure for a video swallow study starts with me discussing things with the therapist and then going to have it done and then returning to discuss it and make a plan. During our first discussion, Jordan was having difficulty sitting in the small room. We got her a coloring book and crayons, but she just wanted to go play in the PT gym with the kids that were having "fun!!" Eventually, we tried turning on a video, but she continued to be frustrated that she could not be out there. This led into a screaming fit that I am sure could have been heard 2 floors above us! It lasted about 10 minutes and although I tried talking to Jordan, comforting her, scolding her and finally putting her in a time out, she continued her blood curdling scream! Ellen and I attempted to continue our discussion but eventually decided we needed to move on to the swallow study.
Ellen collected several different foods for Jordan to try, including the Trix yogurt that made up her diet for the past year or so. She also made liquids of various thicknesses, honey, nectar, and thin. Finally, she brought some cheese puffs and banana and the mesh bags we had previously used with her. She prepared it all the barium so it would show on the x-ray and we got Jordan situated in her highchair. Unfortunately, the recording device was not working so they had a video directly aimed at the screen recording it. Although this is not the quality we wanted, it was better than nothing.
Ellen started with the yogurt. Jordan had a beautiful first swallow but struggled with the residue. This is very common with her. She has a hard time cleaning out her mouth and throat and getting it down. Ellen actually went with larger bites and Jordan did quite well with them. Next she moved on to honey and then to nectar and thin. Jordan did great on all of them! We did 2-3 bites of each before moving on. Then Ellen tried some cheese puffs wrapped in a mesh bag. Jordan chewed on it and again, had a nice swallow. We moved on to banana and the same thing. Then Ellen decided to try something that we have not done, she gave Jordan a small piece of the cheese puff. Jordan chewed it okay, but had no clue how to chew. She actually chewed with her front teeth so Ellen tried to explain and show her to use her back teeth for chewing. We tried another cheese puff and she was doing great! We were in complete amazement and in awe of what we were seeing! Next, Ellen took a small piece of banana and gave it to her. Again, Jordan didn't quite know how to chew, but had a pretty good swallow. She was still struggling with actually chewing the food completely before swallowing and then clearing the residue out of her mouth and throat. Finally, since we had seen such amazing things, Ellen tried giving Jordan a drink of the nectar or thin (I can't remember) liquid straight out of the cup. Jordan's biggest challenge, again, is her lack of knowledge of how to eat and drink. She struggled with putting her lips on the cup and taking a sip, but finally figured it out and took a small one. Ellen tried one more time and then we saw a large aspiration...and silence.
Aspiration is when food goes into the airway. Normally, when this happens, there is a natural reflex that causes us to cough in an attempt to clear it out. Silent Aspiration is common in people with dysphagia. Think about when you take a drink of water and start to cough because it "went down the wrong tube." That is aspiration. Unfortunately, Jordan has a history of the silent kind and we saw it again yesterday.
Up until her aspiration we saw a slight penetration, but everything looked great!! This is very promising, but shows a couple of things. Jordan has always fatigued quickly and this seems to still be the case. We were at about 15 bites when she aspirated and it had been only about 10 minutes. She also struggles with the swallow process from an open cup. This allows us to know that we need to control the delivery of the food/liquid.
In the end, Ellen decided to try 12 weeks with one session of feeding therapy per week. Although, she said that she doesn't know that that will be enough to do much, it is the start we need. I also discussed with her the v-stim therapy and she is going to talk to some people she knows that are more aware of it and discuss Jordan with them. She feels that it could potentially help her with more muscle control awareness. We know we have a long way to go, and we are realistic with our goals, but we are not going to give up!!
Please pray that we can easily schedule Jordan's therapy and that she is cooperative during the sessions.
Thank you so much!!!
Jordan was so excited about yesterday! Every day...all day...every night...Jordan is asking what today and tomorrow are. She uses the phrases "school day," "Julie day," "church day," "home day." It can be very annoying to be asked the same question about 40-50 times a day, but we think it is helpful in her organizing her thoughts and anticipating what to expect. She does best with routine and does not always handle changes with schedule or routine easily.
Wednesday night she was asking about "tomorrow." I was trying to come up with the easiest way to explain that she was going to have a swallow study so I told her she would be having some tests and they were going to take pictures of her eating food with her mouth. I used the word "therapist" and yet, she didn't quite understand (even though she sees several therapists for speech and OT every week, she knows them by name, not profession). I ended up telling her she was going to a doctor because I knew she would understand.
After that, "doctor day" was the phrase she kept using to plan for the day. When we arrived at Mary Free Bed, we waited in the waiting room for a while and when Ellen came to get us, Jordan referred to her as "doctor." Ellen found it quite amusing that Jordan kept calling her "doctor." Oh well, at least Jordan understood what was going on.
The procedure for a video swallow study starts with me discussing things with the therapist and then going to have it done and then returning to discuss it and make a plan. During our first discussion, Jordan was having difficulty sitting in the small room. We got her a coloring book and crayons, but she just wanted to go play in the PT gym with the kids that were having "fun!!" Eventually, we tried turning on a video, but she continued to be frustrated that she could not be out there. This led into a screaming fit that I am sure could have been heard 2 floors above us! It lasted about 10 minutes and although I tried talking to Jordan, comforting her, scolding her and finally putting her in a time out, she continued her blood curdling scream! Ellen and I attempted to continue our discussion but eventually decided we needed to move on to the swallow study.
Ellen collected several different foods for Jordan to try, including the Trix yogurt that made up her diet for the past year or so. She also made liquids of various thicknesses, honey, nectar, and thin. Finally, she brought some cheese puffs and banana and the mesh bags we had previously used with her. She prepared it all the barium so it would show on the x-ray and we got Jordan situated in her highchair. Unfortunately, the recording device was not working so they had a video directly aimed at the screen recording it. Although this is not the quality we wanted, it was better than nothing.
Ellen started with the yogurt. Jordan had a beautiful first swallow but struggled with the residue. This is very common with her. She has a hard time cleaning out her mouth and throat and getting it down. Ellen actually went with larger bites and Jordan did quite well with them. Next she moved on to honey and then to nectar and thin. Jordan did great on all of them! We did 2-3 bites of each before moving on. Then Ellen tried some cheese puffs wrapped in a mesh bag. Jordan chewed on it and again, had a nice swallow. We moved on to banana and the same thing. Then Ellen decided to try something that we have not done, she gave Jordan a small piece of the cheese puff. Jordan chewed it okay, but had no clue how to chew. She actually chewed with her front teeth so Ellen tried to explain and show her to use her back teeth for chewing. We tried another cheese puff and she was doing great! We were in complete amazement and in awe of what we were seeing! Next, Ellen took a small piece of banana and gave it to her. Again, Jordan didn't quite know how to chew, but had a pretty good swallow. She was still struggling with actually chewing the food completely before swallowing and then clearing the residue out of her mouth and throat. Finally, since we had seen such amazing things, Ellen tried giving Jordan a drink of the nectar or thin (I can't remember) liquid straight out of the cup. Jordan's biggest challenge, again, is her lack of knowledge of how to eat and drink. She struggled with putting her lips on the cup and taking a sip, but finally figured it out and took a small one. Ellen tried one more time and then we saw a large aspiration...and silence.
Aspiration is when food goes into the airway. Normally, when this happens, there is a natural reflex that causes us to cough in an attempt to clear it out. Silent Aspiration is common in people with dysphagia. Think about when you take a drink of water and start to cough because it "went down the wrong tube." That is aspiration. Unfortunately, Jordan has a history of the silent kind and we saw it again yesterday.
Up until her aspiration we saw a slight penetration, but everything looked great!! This is very promising, but shows a couple of things. Jordan has always fatigued quickly and this seems to still be the case. We were at about 15 bites when she aspirated and it had been only about 10 minutes. She also struggles with the swallow process from an open cup. This allows us to know that we need to control the delivery of the food/liquid.
In the end, Ellen decided to try 12 weeks with one session of feeding therapy per week. Although, she said that she doesn't know that that will be enough to do much, it is the start we need. I also discussed with her the v-stim therapy and she is going to talk to some people she knows that are more aware of it and discuss Jordan with them. She feels that it could potentially help her with more muscle control awareness. We know we have a long way to go, and we are realistic with our goals, but we are not going to give up!!
Please pray that we can easily schedule Jordan's therapy and that she is cooperative during the sessions.
Thank you so much!!!
Wednesday, March 21, 2012
Another Video Swallow Study Tomorrow Morning
Tomorrow Jordan will go in for another video swallow study. She has not had one for over a year and has had no therapy for almost as long. We don't know what to expect. Since her severe aspiration in December, she has not taken ANYTHING by mouth. Nothing. For a long time she was getting small amounts of yogurt, but that all came to an abrupt end when she started coughing and telling us that her swallow hurt. We are hoping that Jordan is willing to accept foods and will be much more cooperative and sit still better than in the past.
This is the first step in getting Jordan's doc on board to send her to Cleveland Clinic for an evaluation and possible therapy. Since I never updated anything since her appt, basically the doc wants to run a few tests and see where she is and determine if she is a good candidate for the v-stim therapy we want to try. After the swallow study, she wants to have a FEEST study done. This is a more complex swallow study and I am yet undetermined how I think she will tolerate it. I am not sure what the doc will want to do after that, but we see her in August again.
Another interesting thing that has happened is that we switched insurance carriers. We are now with Blue Cross Blue Shield Michigan. Because Derrick's employer is actually self-insured and only uses the insurance company to process claims, the HR people are very aware of Jordan's needs and the insurance challenges we have faced over the past several years. Anyhow, recently I received a call from a Case Manager, an RN who will assist and guide me through figuring out if there is more that we should be doing for Jordan and ensuring that we are using our benefits to their fullest. This has been a great encouragement to me that the insurance company isn't against me...although, I have yet to file Jordan's speech therapy claims.....
Well, I was talking with the case manager about the staining on Jordan's teeth. (Her teeth are covered with an ugly brown/black stain, starting on the gums and working across the entire surface). We have been unable to keep them clean through regular brushing and yet, they come clean every 6 months when the dentist cleans them (for the most part). Well, the case manager felt that something was definitely going on that needed to be addressed and suggested we see a GI doc. I had asked Dr. Burdo-Hartman about this and she said she didn't feel it was necessary for Jordan to see a GI because she didn't have GI issues. When I told this to the case manager, she told me to call her primary doc and get a referral from him because it didn't need to be a specialist that referred her. I had never thought of that. I am my child's advocate, yet I had not fought for her. Well, hopefully soon I will remember to call her doc to request the referral...but that's another story...
This is the first step in getting Jordan's doc on board to send her to Cleveland Clinic for an evaluation and possible therapy. Since I never updated anything since her appt, basically the doc wants to run a few tests and see where she is and determine if she is a good candidate for the v-stim therapy we want to try. After the swallow study, she wants to have a FEEST study done. This is a more complex swallow study and I am yet undetermined how I think she will tolerate it. I am not sure what the doc will want to do after that, but we see her in August again.
Another interesting thing that has happened is that we switched insurance carriers. We are now with Blue Cross Blue Shield Michigan. Because Derrick's employer is actually self-insured and only uses the insurance company to process claims, the HR people are very aware of Jordan's needs and the insurance challenges we have faced over the past several years. Anyhow, recently I received a call from a Case Manager, an RN who will assist and guide me through figuring out if there is more that we should be doing for Jordan and ensuring that we are using our benefits to their fullest. This has been a great encouragement to me that the insurance company isn't against me...although, I have yet to file Jordan's speech therapy claims.....
Well, I was talking with the case manager about the staining on Jordan's teeth. (Her teeth are covered with an ugly brown/black stain, starting on the gums and working across the entire surface). We have been unable to keep them clean through regular brushing and yet, they come clean every 6 months when the dentist cleans them (for the most part). Well, the case manager felt that something was definitely going on that needed to be addressed and suggested we see a GI doc. I had asked Dr. Burdo-Hartman about this and she said she didn't feel it was necessary for Jordan to see a GI because she didn't have GI issues. When I told this to the case manager, she told me to call her primary doc and get a referral from him because it didn't need to be a specialist that referred her. I had never thought of that. I am my child's advocate, yet I had not fought for her. Well, hopefully soon I will remember to call her doc to request the referral...but that's another story...
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