WOW! Our third week at Our Children's House is over! We're in our final week!!! We have a Care Conference on Wednesday, August 29. They should give us our definite discharge date, but it should be Monday, September 3 unless something major happens. If anything, I'm hoping to get out a day or so early so we can have a few days at home to get settled. Crossing our fingers....
Monday, August 20, 2012 - I'm sitting in on all of Eli's feeds today, then I'll start feeding him tomorrow! Eli threw up again today after his 1:30 feeding. Just applesauce this time, no avocado. Adam surprised me by showing up a day early, so he was the one to get thrown up on this time! It was also great timing because he was able to help me and Eli get settled into our new room.
Tuesday, August 21, 2012 - We are all set for Eli's scope tomorrow. We have to be at Cook Children's in Ft. Worth at 6:00 AM!!!! It's going to be an early morning! I'm staying at Baylor Plaza Hotel tonight so hopefully I can get some rest. I also Skyped with Mom and Ryan a few days ago. Ryan told me about some dehydrated apple chips. I told Eli's SLP about them. She was able to buy some and introduced them today. Eli had a really hard time with them, but it's a start!
Wednesday, August 22, 2012 - We went to Cook Children's this morning for Eli's scope. The Eosinophilic Esophagitis is clear, but he has a yeast infection in his esophagus from the medication used to clear up the EE. So we're weaning off that medication and starting a new medication for the next 21 days to clear up the infection. Biopsies should be back in the next few days. Adam also got to feed Eli this afternoon and was very excited!! We talked to Christine with Dietary and Nutrition. Eli is getting about 800 calories during the day so they are cutting his nighttime tube feeds in half, stopping them after 5 hours and only doing 250 cc's. They think they will have him weaned from tube feeds before we leave OCH. Since this is Adam's last night in town, I'm staying at the hotel again and hoping to get LOTS of rest!
Thursday, August 23, 2012 - Adam has fed Eli ALL his feeds today! I'm so proud of how well Eli is doing and it has been such a huge help having Adam here the past few days. I was able to rest well the past 2 nights and am finally feeling better. I will start feeding Eli tomorrow. I'm anxious to also see if they've found any new foods for him.
Friday, August 24, 2012 - I got to feed Eli during his Feeding Therapy today for the first time! He's doing really well. I'm hoping they can find something for him to eat at breakfast other than just applesauce. During Speech Therapy today, Eli ate an apple chip! Dr. Oshutokun's office called today (the GI doctor from Cook Children's). They got the biopsies back and Eli's EE is RESOLVED!! However, there's significant erosion in his esophagus from the EE. So he's doubling the Prevacid dose. He also said that we can begin to re-introduce 1 new food every two weeks. He said to start with the lowest allergen reaction first. He also wants to re-scope in about 2 months. He's scheduled for an appointment on October 16 and scope and biopsies on October 17. Mom, Grandma and Pop came into town today for the weekend, I'm so excited to have them here.
Saturday, August 25, 2012 - Eli threw up during breakfast today. They are going to put him on Carafate to see if that will help.
Sunday, August 26, 2012 - Before Eli's last fe3ed today, he had a little breakdown. He started crying and said that he didn't want to go take his bites; he just wanted to go home. All I could do was hold him, cry with him and tell him that I wanted to go home too. I'm really frustrated that they haven't introduced any new foods in about 10+ days. This Momma's putting her foot down in the morning. We only have one week left and we need more progress!!
Things are starting to wrap up! I should be learning how to prepare food at the end of the week! So proud of Eli and the progress he has made! He is one tough, amazing little guy!! Please continue to send prayers our way as we go through our final week at Our Children's House and prepare to return home!!
Monday, August 27, 2012
Wednesday, August 22, 2012
OCH: Week Two
Sorry this past week's update is a little late. I think my exhaustion is catching up with me....
So we've been in OCH for a little over two weeks now and Eli is making great progress. I'm a little short on time and trying to get to bed really early, so I'll just do a quick day-by-day update based off what I have written in my journal.
Monday, August 13 - Eli ate blenderized green beans and black beans in therapy today. They also want to try the Quinoa (grain) soon, as well as mandarin oranges.
Tuesday, August 14 - We saw Dr. Oshutokun (GI) at Cook Children's Hospital in Fort Worth today. We will be doing a scope next week. He thinks the feeding tube will be long term due to Eli's high number of allergies. He also said the egg allergy is very severe and he will be writing a prescription for an Epi-pen. We will come back for a follow-up in October. He is wanting to do food trials of 2-3 foods at a time and re-scope every 3 months to check for eosinophils (evidence of allergic reaction in the esophagus). We are very excited to finally be seeing a doctor who seems to know what he is talking about! Eli tried the quinoa today. He did okay with two bites, then gagged twice, so they stopped.
Wednesday, August 15 - Cook Children's called today. The facility where they scheduled Eli's scope for doesn't take his insurance. They rescheduled it for this next Wednesday at the main Cook's facility. Since Eli's scope was changed, Adam will fly in early Tuesday morning and fly back to Lubbock late Thursday. We had our Care Conference. They think Eli is progressing really well. I get to start observing Eli's feeding therapy this afternoon and through the weekend through a window, then start being in the room on Monday! I observed Eli in Feeding Therapy. It was AMAZING!! He ate applesauce and blenderized black beans and drank Elecare.
Thursday, August 16 - Eli ate a new food today.... Avocado blended with Elecare! We finally have a diagnosis for the little bumps Eli has; a minor staph infection.
Friday, August 17 - Nothing new today. I think Eli and I are both just exhausted..... And homesick. Eli has told me several times today that he misses Adam and wants to go home.
Saturday, August 18 - Eli tried pinto beans today. His Speech Therapist is going to try and find something other than beans for him to eat. It poured rain this afternoon and evening. We were in a flash flood warning for a while. Grey, sandy, STINKY stuff backed up into our sink in our room. They moved us to a new room temporarily until they can figure out where to move us for the remainder of our stay.
Sunday, August 19 - Nothing really new today. Weekends are pretty quiet. I'm so ready to get settled into our new room and for Adam to get here on Tuesday! My cousin Jana came to visit today. It was really good to see her and have some company. Plus she brought me chocolate! (You can't buy good candy in the vending machines here.) Then Eli came out of Feeding Therapy and threw up applesauce and avocado all over me.... Needless to say, Jana's visit was cut short.
So there is Week Two!!! Lots going on! I am finally resting better, so I plan to have Week Three's blog posted on Monday! Thank you so much to everyone who has called, texted, sent cards, sent packages, and sent prayers. We are very blessed to have such amazing family and friends surrounding us right now!!
So we've been in OCH for a little over two weeks now and Eli is making great progress. I'm a little short on time and trying to get to bed really early, so I'll just do a quick day-by-day update based off what I have written in my journal.
Monday, August 13 - Eli ate blenderized green beans and black beans in therapy today. They also want to try the Quinoa (grain) soon, as well as mandarin oranges.
Tuesday, August 14 - We saw Dr. Oshutokun (GI) at Cook Children's Hospital in Fort Worth today. We will be doing a scope next week. He thinks the feeding tube will be long term due to Eli's high number of allergies. He also said the egg allergy is very severe and he will be writing a prescription for an Epi-pen. We will come back for a follow-up in October. He is wanting to do food trials of 2-3 foods at a time and re-scope every 3 months to check for eosinophils (evidence of allergic reaction in the esophagus). We are very excited to finally be seeing a doctor who seems to know what he is talking about! Eli tried the quinoa today. He did okay with two bites, then gagged twice, so they stopped.
Wednesday, August 15 - Cook Children's called today. The facility where they scheduled Eli's scope for doesn't take his insurance. They rescheduled it for this next Wednesday at the main Cook's facility. Since Eli's scope was changed, Adam will fly in early Tuesday morning and fly back to Lubbock late Thursday. We had our Care Conference. They think Eli is progressing really well. I get to start observing Eli's feeding therapy this afternoon and through the weekend through a window, then start being in the room on Monday! I observed Eli in Feeding Therapy. It was AMAZING!! He ate applesauce and blenderized black beans and drank Elecare.
Thursday, August 16 - Eli ate a new food today.... Avocado blended with Elecare! We finally have a diagnosis for the little bumps Eli has; a minor staph infection.
Friday, August 17 - Nothing new today. I think Eli and I are both just exhausted..... And homesick. Eli has told me several times today that he misses Adam and wants to go home.
Saturday, August 18 - Eli tried pinto beans today. His Speech Therapist is going to try and find something other than beans for him to eat. It poured rain this afternoon and evening. We were in a flash flood warning for a while. Grey, sandy, STINKY stuff backed up into our sink in our room. They moved us to a new room temporarily until they can figure out where to move us for the remainder of our stay.
Sunday, August 19 - Nothing really new today. Weekends are pretty quiet. I'm so ready to get settled into our new room and for Adam to get here on Tuesday! My cousin Jana came to visit today. It was really good to see her and have some company. Plus she brought me chocolate! (You can't buy good candy in the vending machines here.) Then Eli came out of Feeding Therapy and threw up applesauce and avocado all over me.... Needless to say, Jana's visit was cut short.
So there is Week Two!!! Lots going on! I am finally resting better, so I plan to have Week Three's blog posted on Monday! Thank you so much to everyone who has called, texted, sent cards, sent packages, and sent prayers. We are very blessed to have such amazing family and friends surrounding us right now!!
Monday, August 13, 2012
OCH: Week 1
Well, Eli has been in the hospital at Our Children's House for one week now. We are finally more settled in to the routine now. The 7:30 am feeds are coming a bit easier and Eli actually told me today that he was hungry!!! We have our room all set up and it's pretty comfortable.
Ironically, Eli is sleeping on the queen-size air mattress and I'm in the hospital bed.... It's just more comfortable that way.
Eli has a pretty set schedule now. He has Feeding Therapy at 7:30 am, 11:00 am, 1:30 pm and 4:30 pm seven days a week, then Occupational Therapy at 9:30 am Monday-Friday, and Speech Therapy at 4:00 Monday-Friday. So far, feeding therapy is going really well! He has been eating applesauce now (about 3.5-4 ounces each time) and drinking Hemp milk in two sessions, then EleCare formula in 2 meals. We are working on transitioning completely to EleCare. This is what he is getting through his tube now, as well.
Eli actually ate some applesauce for us in the room a few nights ago!! This was the first time in about a year or more that he has actually eaten something other than go-gurt!!! We were SO excited!!!
Between therapies, Eli has been having a really good time playing. He has been riding his scooter through the halls, which he is really enjoying!
Bizzy, the music therapist also stopped by. Eli had a BLAST with this! He loved dancing!
They have a great outdoor area that has been really nice. We've been able to escape out there several times and enjoy some fresh air!!
This week will be pretty busy for us. Eli has his first appointment with the GI group at Cook Children's Hospital in Fort Worth. We are really excited about this and hopeful that they will agree to take Eli on as a patient. We had initially scheduled the appointment for a second opinion, but have since decided that we would prefer to find a new GI doctor, rather than keep the doctor in Lubbock.
We also have our first Care Conference on Wednesday. This is when we meet with the Psychologist, all the therapists, etc. to get feedback from them on how Eli is doing. We will also have the opportunity to ask them some questions.
There is a Parent's Lunch on Thursday that I am looking forward to. Supposedly, the food is really good! =) This is definitely something to be happy about!!!
Other than that, things seem to be going really well. Eli is making progress and we are very hopeful for GREAT things!
Thanks again for all the prayers and well wishes!
Oh, and I know several people are still asking for our address here at Our Children's House:
Elijah Rouse c/o
Our Children's House at Baylor
3301 Swiss Avenue, Room 121
Dallas, Texas 75204
Eli has a pretty set schedule now. He has Feeding Therapy at 7:30 am, 11:00 am, 1:30 pm and 4:30 pm seven days a week, then Occupational Therapy at 9:30 am Monday-Friday, and Speech Therapy at 4:00 Monday-Friday. So far, feeding therapy is going really well! He has been eating applesauce now (about 3.5-4 ounces each time) and drinking Hemp milk in two sessions, then EleCare formula in 2 meals. We are working on transitioning completely to EleCare. This is what he is getting through his tube now, as well.
Eli actually ate some applesauce for us in the room a few nights ago!! This was the first time in about a year or more that he has actually eaten something other than go-gurt!!! We were SO excited!!!
They introduce new foods in Speech Therapy before introducing them in Feeding Therapy. They are still waiting for some things to be delivered. They are having a bit of a difficult time finding things that Eli can eat. But they do currently have Quinoa (a grain) that Eli can eat, so they are planning on introducing that this afternoon.
I am really impressed with the care they are taking to make sure that Eli does not have contact with foods he is allergic to. They have bought him his own blender and utensils to make sure there is no cross-contamination. He even has his own, personal feeding room that none of the other kids are allowed to use. Very pleased with the care they are taking!!
Between therapies, Eli has been having a really good time playing. He has been riding his scooter through the halls, which he is really enjoying!
A youth group from Odessa came to town for a Rangers game, but stopped by to play with the kids. Eli loved playing with the playdoh with them.... and all the attention!
Bizzy, the music therapist also stopped by. Eli had a BLAST with this! He loved dancing!
They have a great outdoor area that has been really nice. We've been able to escape out there several times and enjoy some fresh air!!
This week will be pretty busy for us. Eli has his first appointment with the GI group at Cook Children's Hospital in Fort Worth. We are really excited about this and hopeful that they will agree to take Eli on as a patient. We had initially scheduled the appointment for a second opinion, but have since decided that we would prefer to find a new GI doctor, rather than keep the doctor in Lubbock.
We also have our first Care Conference on Wednesday. This is when we meet with the Psychologist, all the therapists, etc. to get feedback from them on how Eli is doing. We will also have the opportunity to ask them some questions.
There is a Parent's Lunch on Thursday that I am looking forward to. Supposedly, the food is really good! =) This is definitely something to be happy about!!!
Other than that, things seem to be going really well. Eli is making progress and we are very hopeful for GREAT things!
Thanks again for all the prayers and well wishes!
Oh, and I know several people are still asking for our address here at Our Children's House:
Elijah Rouse c/o
Our Children's House at Baylor
3301 Swiss Avenue, Room 121
Dallas, Texas 75204
Thursday, August 9, 2012
It's a good start...
Well, today is the day that Eli gets to start exploring foods in therapy. To this point, he has just been drinking his Hemp milk and trying the Elecare. Elecare is a hypoallergenic formula that Eli has been switched to for his tube feeds. He had previously been on Pediasure 1.5, but was allergic to it. Eli has mainly been on Hemp milk and Elecare until this point to "work him into the system". The "system" is he is not forced to take bites or drinks, but has the option to. He is on a timer, so whether or not he wants to eat or drink, he has to stay in the feeding room for the entire time. There are a few other rules that we will learn at a later time.
Anyway, today, he is getting to start with applesauce. New foods will always be introduced in Speech Therapy before being introduced into Feeding therapy. They have had a hard time finding foods for Eli due to his limited diet with allergies. They spent the past day and a half going over ingredients in the feeding room here at Our Children's House. They would think they had found a food he could eat.... then soy, corn syrup, or some other allergen would be an ingredient. They were finally able to find applesauce he was able to eat. The other foods they will be trying in his diet are: peaches, pears, avocado, green beans, chicken, turkey, black beans and pinto beans. They are still working to find a soup he can eat that does not contain allergens.
All of Eli's diet right now will be blenderized. They are buying him his own blender so that there will not be a risk of cross-contamination with the food the other kids eat. I'm very impressed with the care they are taking to make sure Eli is getting healthy, safe foods. They have also noticed that Eli has very weak jaw muscles. That is another reason why his diet will be purely blenderized for now. They are hoping his jaw muscles will strengthen, but also feel that it could be a very long time (if ever) before Eli starts to chew foods, considering he has really never chewed food.
But, we are at a GREAT starting point! I am so thankful that we are finally at Our Children's House where Eli is getting the treatment and therapy he needs! I have high hopes for the next 3 1/2 weeks!!!
Anyway, today, he is getting to start with applesauce. New foods will always be introduced in Speech Therapy before being introduced into Feeding therapy. They have had a hard time finding foods for Eli due to his limited diet with allergies. They spent the past day and a half going over ingredients in the feeding room here at Our Children's House. They would think they had found a food he could eat.... then soy, corn syrup, or some other allergen would be an ingredient. They were finally able to find applesauce he was able to eat. The other foods they will be trying in his diet are: peaches, pears, avocado, green beans, chicken, turkey, black beans and pinto beans. They are still working to find a soup he can eat that does not contain allergens.
All of Eli's diet right now will be blenderized. They are buying him his own blender so that there will not be a risk of cross-contamination with the food the other kids eat. I'm very impressed with the care they are taking to make sure Eli is getting healthy, safe foods. They have also noticed that Eli has very weak jaw muscles. That is another reason why his diet will be purely blenderized for now. They are hoping his jaw muscles will strengthen, but also feel that it could be a very long time (if ever) before Eli starts to chew foods, considering he has really never chewed food.
But, we are at a GREAT starting point! I am so thankful that we are finally at Our Children's House where Eli is getting the treatment and therapy he needs! I have high hopes for the next 3 1/2 weeks!!!
Tuesday, August 7, 2012
Getting settled in...
Well, we are starting to get settled in at Our Children's House. Eli has been very busy with therapy already today. He has had Feeding therapy (at 7:30 am!), Occupational Therapy and Speech therapy. He also has three more feeding sessions today, as well as physical therapy. We've seen the social worker, pediatrician, respiratory therapist AND had two labs drawn! Needless to say, it has been a very long day.
And since this is a hospital, nurses round every hour during the night. It has been a bit difficult for me because I am having to let go and step back to let the nurses do their jobs. They do Eli's tube feedings at night, administer all meds, etc.... All the stuff that I normally do.
But we are starting to get the room organized and learn our schedule and routine.
I think the hardest thing for Eli is that he is not allowed to drink or eat outside of his feeding sessions, except for after his final session for the day. Then he can eat and drink what he wants. He is only allowed 3 ounces of water between sessions, which is not much for him considering that he was drinking about 60-70+ ounces a day at home. But hopefully, after these first few days, he will be more in his routine and the drinking won't be such a big deal.
Everyone we have met has been incredibly nice. We feel very welcome and are just trying to settle in a bit. The bathroom situation is a little tough. I have a shared toilet with another family. Then my shower is actually in the playroom and shared with three other families. I do have a sink in my room.... so I may get really good about sticking my legs up in the sink to shave and washing my hair in the sink! I've also warned all family and friends that come to visit to just be prepared to watch Eli for a bit so I can go to their hotel and take a real shower!! =)
I haven't taken many pictures yet, but I will soon and will be posting them as I can. Several people have asked for our address to mail cards. We would actually REALLY appreciate this! I think we are definitely going to need some words of encouragement over this next month! The address is:
Elijah Rouse c/o Our Children's House at Baylor
3301 Swiss Avenue
Room 121
Dallas, Texas 75204
I was comforted some this morning when I realized that Eli's room number, 121, is my Dad's old badge number! Helped me to think that maybe it was a sign from God that He and my Dad are watching over us and things will work out!!
We want to say thank you to everyone who has prayed for us, sent us words of encouragement, etc. We definitely appreciate them!!
I think the hardest thing for Eli is that he is not allowed to drink or eat outside of his feeding sessions, except for after his final session for the day. Then he can eat and drink what he wants. He is only allowed 3 ounces of water between sessions, which is not much for him considering that he was drinking about 60-70+ ounces a day at home. But hopefully, after these first few days, he will be more in his routine and the drinking won't be such a big deal.
Everyone we have met has been incredibly nice. We feel very welcome and are just trying to settle in a bit. The bathroom situation is a little tough. I have a shared toilet with another family. Then my shower is actually in the playroom and shared with three other families. I do have a sink in my room.... so I may get really good about sticking my legs up in the sink to shave and washing my hair in the sink! I've also warned all family and friends that come to visit to just be prepared to watch Eli for a bit so I can go to their hotel and take a real shower!! =)
I haven't taken many pictures yet, but I will soon and will be posting them as I can. Several people have asked for our address to mail cards. We would actually REALLY appreciate this! I think we are definitely going to need some words of encouragement over this next month! The address is:
Elijah Rouse c/o Our Children's House at Baylor
3301 Swiss Avenue
Room 121
Dallas, Texas 75204
I was comforted some this morning when I realized that Eli's room number, 121, is my Dad's old badge number! Helped me to think that maybe it was a sign from God that He and my Dad are watching over us and things will work out!!
We want to say thank you to everyone who has prayed for us, sent us words of encouragement, etc. We definitely appreciate them!!
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