I can't believe it has been over a month since I've updated. Time is just flying by in the Heyne household.
We took our trip to Louisville, KY for my insurance update. It was a great time. We visited the Louisville zoo with the kids which is an absolute wonderful zoo. If you ever get the chance, be sure to visit as it is one of the best. I took my 2 1/2 day class and while I hate taking these classes, it was one of the better ones I had taken. We took the kids to Chucky Cheese (how I hate that place) and to a place called Puzzles Fun Dome. The fun dome is filled with inflatable slides of all shapes and sizes. I think that Daniel ran off all the calories that we fed him that day. They were exhausted by the time we came home.
Daniel is doing well. We are still holding at 4 meals per day (every 3 hours) and I am working him back up to 10 oz meals. He has steadily improved and yesterday was the first day that he took 40.2 oz total for the day. Today he is going to beat that record. We will keep him at this for a while to make sure he's doing okay and then I'll try 5 meals a day. We need to let him adjust to this after being so sick. Daniel made his visit to Cincinnati to see the GI doc last week (his first visit since being home) and they are extremely impressed. He is doing so well that they don't need to see him for 6 months (yipeeeeeee)! The docs asked a lot of questions about what he is eating and they calculated everything and he is getting plenty of nutrition. We went the week before for labs and all his levels look really good so no worries there. We will just keep plugging along with the eating and try to come up with new things to feed him. I'm sure most of you know that everything we feed is pureed. I want to make sure you all understand that he is not eating typical 3-4 year old food. Once we get him acclimated to all this, we will work with someone to help him learn to chew. For now, he is doing wonderful.
Abi has started a preschool 2 days a week. She is still adjusting. This is all so new to her. Eric and I thought we needed to do this before she starts Kindergarten in August. We were having nightmares about just one day putting her on the bus and traumatizing her. She has never stayed with anyone other than her Grandparents so this is good for her. Eric thinks we need to up it to 3 days a week because she is having a hard time with goodbyes. The teacher says that while she cries when I drop her off and asks that I pick her up early (which I don't), she settles as soon as I leave and is good the rest of the day. We'll just wait and see. I don't really want to send her 3 days because I think she should be able to enjoy her last summer before school and to tell you the truth, I don't think an extra day is going to solve her crying when I leave. If you have a comment about this, leave me a message and let me know what you think (2 days or 3 will it matter?).
Eric and I are fine. I don't feel like I ever sit down. Between 4 feedings a day, getting Daniel's food ready, and all the other household duties, well it seems overwhelming sometimes. I just keep going like the energizer bunny I guess. I know that things are better than they used to be with Daniel's health and I should be grateful for that. However, sometimes I just feel the need to scream at all that needs to be done around here. But, I'm doing okay with everything and am just hoping that things continue on the right path and things even out. Eric is doing good too. He is working hard at work and is helping his parents out too. His dad has had some medical issues so Eric is helping with their mowing (5 acres - OMG) on top of our yard and is helping with whatever else they need. I guess you could say that we are both really busy. I think we speak to each other every couple of days (hahahaha)!
Well, I gotta go. I'll try to do better about updating all of this. Summer is here and we try to get outside as much as possible. Please know that we think of all of you often and hope that things are well in your household.
-Angela-
Thursday, May 28, 2009
Tuesday, April 21, 2009
Getting better and a trip...
Daniel is doing better. I am thankful that we are over the hump. Our short hospital stay at Dayton Children's helped him out and we are back to working on eating by mouth. We started out with just 2 oral feeds per day and yesterday (Monday) went to 3. He didn't forget a thing and picked right back up where he left off. Monday he only needed to be on the feeding pump for 8 hours as he ate enough by mouth for the rest of his calories. So far, he is on his way to a better day today. We will keep him on 3 feeds per day for a week or so and then will move up to 4 and then back up to 5. It may take us about a month to get him back up to 5 feeds per day. My next task is to find a dietician in the area that can help me with his diet. Wish me luck!
Abigale is doing great. She is happy we are home and we have started to talk to her about kindergarten. I'm still concerned if she is ready or not and Eric and I are talking about trying to find her a part-time pre-k class to go to for the summer. I have been on the phone this morning inquiring. She has a dentist appointment tomorrow morning and we are going to go visit a pre-k class tomorrow afternoon to see what it is like. I just want to send her about 3 days a week to get her acclimated to going to kindergarten. I'm hoping that we can find something for her because I think it would do her good. I'm not sure how I will feel because she has never stayed with anyone other than us or her grandparents. I'm not sure how I feel about leaving her at a school.
Finally, we (me, Abi, Daniel and my mom) are going to go to Louisville, KY next week. I need to get my CIC (insurance class) update done so it will be over and since Daniel is doing well and I was able to get in we decided that there is no time like the present. I wasn't planning on going this soon but I need to get it done by August because of Abi starting Kindergarten and since we have went to Louisville that last 2 years and know the area, I decided to go and get it done now. I just hate these classes but need to keep my designation for when I go back to work. Did I say go back to work???? What have I been doing these last 3 1/2 years??? This has been more work than any job I ever had.
Well, I gotta get off here and get some things done. I have a million and one things to do. Take care.
-Angela-
Abigale is doing great. She is happy we are home and we have started to talk to her about kindergarten. I'm still concerned if she is ready or not and Eric and I are talking about trying to find her a part-time pre-k class to go to for the summer. I have been on the phone this morning inquiring. She has a dentist appointment tomorrow morning and we are going to go visit a pre-k class tomorrow afternoon to see what it is like. I just want to send her about 3 days a week to get her acclimated to going to kindergarten. I'm hoping that we can find something for her because I think it would do her good. I'm not sure how I will feel because she has never stayed with anyone other than us or her grandparents. I'm not sure how I feel about leaving her at a school.
Finally, we (me, Abi, Daniel and my mom) are going to go to Louisville, KY next week. I need to get my CIC (insurance class) update done so it will be over and since Daniel is doing well and I was able to get in we decided that there is no time like the present. I wasn't planning on going this soon but I need to get it done by August because of Abi starting Kindergarten and since we have went to Louisville that last 2 years and know the area, I decided to go and get it done now. I just hate these classes but need to keep my designation for when I go back to work. Did I say go back to work???? What have I been doing these last 3 1/2 years??? This has been more work than any job I ever had.
Well, I gotta get off here and get some things done. I have a million and one things to do. Take care.
-Angela-
Monday, April 13, 2009
Day Fifty Eight & Fifty Nine & Home....
Thursday Daniel and I went to clinic to say our last goodbye and complete the discharge paperwork. It was hard to leave on such a bad note because Daniel was definitely not feeling good. He didn't really want to be social with anyone and they all loved him so much that it was hard to see him not interacting with them like he was the weeks before. It was bittersweet because I would have liked to walk out of there with him eating so much by mouth and we walked out with him eating nothing. Don't get me wrong, I know that he will pick back up with his eating it was just sad for me and for the people at clinic. I made some really close friends and will cherish all the memories and am so glad we made the decision to go because Daniel really came a long way with his eating and now we just need to get back on track. We went back to the hotel to wait on daddy's plane and then picked him up at the airport. We stayed overnight and finally on day fifty nine, we left Richmond VA.
Friday & Saturday - we hit the road early on Friday because Eric and I were both sure that Daniel was going to need to be admitted to Children's in Dayton. The trip was a good one and Daniel was comfortable in the backseat watching a video for the entire trip. We arrived home at about 7:00pm and called the doc on call at Children's. She finally called back and said that we needed to bring him in. Let me tell you that Abi was not happy that we had just gotten home and had to leave again. Daniel and I got to Children's at about 8:30 pm and finally at 5:00am on Saturday we were up in a room. I hate emergency departments!!! Daniel got IV fluids from the time we got to the ER until late Saturday night at which time they changed him over to 1/2 strength formula. He did well. He still didn't look good but he wasn't getting any worse.
Sunday (Easter) - They started full strength feeds and he needed to stay on them for 24 hours. Mamaw and Papaw came and stayed with him so I could go home and be with Abi for a while since it was Easter. The Easter Bunny visited and hid some eggs around the house and her Easter basket and she was so extremely excited. She said she was a little sad that Daniel wasn't home to help her find eggs and that made me step back a little. She is so grown up! It amazes me everyday. We called on Daniel throughout the day and he continued to do well so they said we could probably go home on Monday.
Monday - the doc came in and said since he is doing well we could go home but no eating by mouth for a day or so. They have had him on feeds for 24 hours straight so we need to wean him back down to just 12 hours at night before we can feed him again. This will take me a day or so to do. Hopefully by Wednesday or Thursday I'll have him eating again. Please keep us in your thoughts that this is the end of this nasty virus. He is still looking a little "off" so I'll just have to wait and see.
Well, I gotta get off here. I'll update again soon.
-Angela-
Friday & Saturday - we hit the road early on Friday because Eric and I were both sure that Daniel was going to need to be admitted to Children's in Dayton. The trip was a good one and Daniel was comfortable in the backseat watching a video for the entire trip. We arrived home at about 7:00pm and called the doc on call at Children's. She finally called back and said that we needed to bring him in. Let me tell you that Abi was not happy that we had just gotten home and had to leave again. Daniel and I got to Children's at about 8:30 pm and finally at 5:00am on Saturday we were up in a room. I hate emergency departments!!! Daniel got IV fluids from the time we got to the ER until late Saturday night at which time they changed him over to 1/2 strength formula. He did well. He still didn't look good but he wasn't getting any worse.
Sunday (Easter) - They started full strength feeds and he needed to stay on them for 24 hours. Mamaw and Papaw came and stayed with him so I could go home and be with Abi for a while since it was Easter. The Easter Bunny visited and hid some eggs around the house and her Easter basket and she was so extremely excited. She said she was a little sad that Daniel wasn't home to help her find eggs and that made me step back a little. She is so grown up! It amazes me everyday. We called on Daniel throughout the day and he continued to do well so they said we could probably go home on Monday.
Monday - the doc came in and said since he is doing well we could go home but no eating by mouth for a day or so. They have had him on feeds for 24 hours straight so we need to wean him back down to just 12 hours at night before we can feed him again. This will take me a day or so to do. Hopefully by Wednesday or Thursday I'll have him eating again. Please keep us in your thoughts that this is the end of this nasty virus. He is still looking a little "off" so I'll just have to wait and see.
Well, I gotta get off here. I'll update again soon.
-Angela-
Wednesday, April 8, 2009
Day Fifty Six and Fifty Seven
I didn't post yesterday (Tuesday) because it was not a good day. We went off to the clinic in the morning but by the time we got there Daniel was looking extremely pale and was not in the mood to eat. We decided to go home and take another day off. Well, by 6:30pm last night he was "dumping" big time. Everything that was going in was going out and he was not staying hydrated. I decided that we needed to make a trip to the ER and upon checking his blood we found he was dehydrated and needed to get some fluids. We were at the hospital until after midnight at which time his blood levels showed no dehydration. We were instructed that he can't have anything except pedialyte until tonight at bedtime. At that time, I will change him to 1/2 strength formula until tomorrow afternoon and then change him over to full strength formula. Would you all take a moment to cross your fingers and toes that he can tolerate starting his feeds back up. He caught this virus and it has really taken it's toll on him. We need his intestines to start working and accept the formula before we can feed him by mouth again.
We are still going to leave on Friday. I called the clinic today and Daniel and I will visit there in the morning to say goodbye to everyone and sign Daniel's discharge paperwork. They say even with this set back we are okay to go. Daniel knows the protocol and so do I so we shouldn't have any problem getting him back to oral eating when he is well enough to do so. We could have opted to stay another week but we need to get home and get closer to his regular doctors. If he doesn't tolerate his formula when we start them back up, we most likely will need to be admitted to the hospial to receive nutrition until his intestines get back to where they were. If that happens, I don't want it to be here in Richmond, I want it to be at home. I'm really sad that our journey here will end on such a downer because I wanted Daniel to experience having his "graduation" party from the feeding clinic and for Daniel to show off his new eating talents to G&G Heyne and Mamaw & Papaw when he came home. While we won't have the "graduation" part at the clinic, he will show off all his new talents when he's feeling better.
Well, I gotta go. I hate even writing about this. I wanted to write about how well Daniel was doing and instead I gotta write about how sick he is.
-Angela-
We are still going to leave on Friday. I called the clinic today and Daniel and I will visit there in the morning to say goodbye to everyone and sign Daniel's discharge paperwork. They say even with this set back we are okay to go. Daniel knows the protocol and so do I so we shouldn't have any problem getting him back to oral eating when he is well enough to do so. We could have opted to stay another week but we need to get home and get closer to his regular doctors. If he doesn't tolerate his formula when we start them back up, we most likely will need to be admitted to the hospial to receive nutrition until his intestines get back to where they were. If that happens, I don't want it to be here in Richmond, I want it to be at home. I'm really sad that our journey here will end on such a downer because I wanted Daniel to experience having his "graduation" party from the feeding clinic and for Daniel to show off his new eating talents to G&G Heyne and Mamaw & Papaw when he came home. While we won't have the "graduation" part at the clinic, he will show off all his new talents when he's feeling better.
Well, I gotta go. I hate even writing about this. I wanted to write about how well Daniel was doing and instead I gotta write about how sick he is.
-Angela-
Monday, April 6, 2009
Day Fifty Five
Daniel is feeling better. His temperature broke last night and he is slowly coming back to himself. He is still a little pale and his energy level is down but I'm sure he'll be back to normal soon. Since he didn't have a fever today, we will go back to clinic tomorrow. We may not push as much volume as normal but I just want to get these last few days over with and head home. I can't believe I have been away from home for 55 days.....it seems like forever!!!!
Also, thank you all for keeping Daniel and me in your thoughts and prayers. For those of you that have kept up with this blog, I so appreciate that you have been walking this journey with Daniel and I even if it is through my words and thoughts. Life is hard sometimes but it is nice to know that other people are there to give me words of encouragement as well as inspiration to keep going. I would never give up on Daniel but it's nice to have some really good friends and family in my corner.
Off to bed for tonight.
-Angela-
Also, thank you all for keeping Daniel and me in your thoughts and prayers. For those of you that have kept up with this blog, I so appreciate that you have been walking this journey with Daniel and I even if it is through my words and thoughts. Life is hard sometimes but it is nice to know that other people are there to give me words of encouragement as well as inspiration to keep going. I would never give up on Daniel but it's nice to have some really good friends and family in my corner.
Off to bed for tonight.
-Angela-
Sunday, April 5, 2009
Day Fifty Three and Fifty Four
Nothing is ever easy....I say this to myself at least 1x per day. I'm not sure why I was picked to take on the monumental task of taking care of a child with Short Gut but I have accepted it and roll with whatever comes my way. However, today was one of those days where I kept asking "why me? why me?". No one answered but I still asked.
Anyway, this weekend did not go as planned. Friday Daniel awoke at 3:00am only to start throwing up. He continued to do this throughout the night and by morning he had a fever. Needless to say, there was no feeding him so off to the store we went to get Pedialyte and hooked him up to his pump for the day to keep him from getting dehydrated. He was a miserable mess the rest of the day and all through the night. About 2:00am, he awoke with a temperature of 102. I went ahead and gave him some Tylenol. Remember, he can only have 2 doses of Tylenol per day so I have now used 1 dose and he can't have another until bedtime Sunday night....oh my! He was up and down the rest of the night and by morning his temperature was still holding at 102. He was beet red and hot to the touch and I wasn't sure what to do for him. I found an urgent care in the area but they didn't open until 4:00pm and by now his temperature is up to 103. I took him to the local emergency room where bloodwork was done and a chest xray. All came back negative for any bacterial infection so he just has a virus and will need to get over it. We got onto the phone with Cincinnati Children's GI who called our GI doc at home and he agreed that since the temperature was now up to 104 that we needed to give him some extra relief. Because the temperature is so high, we are giving him 2 doses of Tylenol and 2 doses of Motrin. Nothing more per doc. He has had 1 dose of Tylenol and 1 dose of Motrin today. The temperature was going down but now it is creeping back up so I'll have to wait and see what happens. We don't want to give him anything unnecessary because of liver/stomach damage. Let me say this, the hospital was nice and the doc was nice but it is extremely scary being so far from home and not being able to take Daniel to his regular docs. This was not a children's hospital and the doc didn't even know what Short Gut was.....excuse me? I had to explain and then explain to the nurse why I was feeding Daniel with a feeding tube. Don't nurses have to know this before they graduate????
Onto our next hurdle of the day....I was changing Daniel's pull up and he had his backpack on. When I went to put the new pull up on, he had his arms hanging at his side. In a split second, he lifted his arm and got it caught in his feeding tube line and managed to pull his feeding button out with the balloon inflated. The whole thing came right out. Daniel is screaming and after my initial 1 second of freaking, I camly get my supplies, deflate the balloon and replace his button. I just want to go home...I don't want to be in Richmond VA anymore! He's doing fine and the button is working fine so everything will be okay. Can I ask again, why me?
Well, we won't be going to clinic tomorrow. We have to be at least 24 hours with no temperature before we can come back so we'll have to wait to see if we go back on Tuesday or not. I'll let you all know tomorrow how he is doing.
Good Night....Sleep Tight!!!
-Angela-
Anyway, this weekend did not go as planned. Friday Daniel awoke at 3:00am only to start throwing up. He continued to do this throughout the night and by morning he had a fever. Needless to say, there was no feeding him so off to the store we went to get Pedialyte and hooked him up to his pump for the day to keep him from getting dehydrated. He was a miserable mess the rest of the day and all through the night. About 2:00am, he awoke with a temperature of 102. I went ahead and gave him some Tylenol. Remember, he can only have 2 doses of Tylenol per day so I have now used 1 dose and he can't have another until bedtime Sunday night....oh my! He was up and down the rest of the night and by morning his temperature was still holding at 102. He was beet red and hot to the touch and I wasn't sure what to do for him. I found an urgent care in the area but they didn't open until 4:00pm and by now his temperature is up to 103. I took him to the local emergency room where bloodwork was done and a chest xray. All came back negative for any bacterial infection so he just has a virus and will need to get over it. We got onto the phone with Cincinnati Children's GI who called our GI doc at home and he agreed that since the temperature was now up to 104 that we needed to give him some extra relief. Because the temperature is so high, we are giving him 2 doses of Tylenol and 2 doses of Motrin. Nothing more per doc. He has had 1 dose of Tylenol and 1 dose of Motrin today. The temperature was going down but now it is creeping back up so I'll have to wait and see what happens. We don't want to give him anything unnecessary because of liver/stomach damage. Let me say this, the hospital was nice and the doc was nice but it is extremely scary being so far from home and not being able to take Daniel to his regular docs. This was not a children's hospital and the doc didn't even know what Short Gut was.....excuse me? I had to explain and then explain to the nurse why I was feeding Daniel with a feeding tube. Don't nurses have to know this before they graduate????
Onto our next hurdle of the day....I was changing Daniel's pull up and he had his backpack on. When I went to put the new pull up on, he had his arms hanging at his side. In a split second, he lifted his arm and got it caught in his feeding tube line and managed to pull his feeding button out with the balloon inflated. The whole thing came right out. Daniel is screaming and after my initial 1 second of freaking, I camly get my supplies, deflate the balloon and replace his button. I just want to go home...I don't want to be in Richmond VA anymore! He's doing fine and the button is working fine so everything will be okay. Can I ask again, why me?
Well, we won't be going to clinic tomorrow. We have to be at least 24 hours with no temperature before we can come back so we'll have to wait to see if we go back on Tuesday or not. I'll let you all know tomorrow how he is doing.
Good Night....Sleep Tight!!!
-Angela-
Friday, April 3, 2009
Day Fifty Two
Still holding our own. Daniel's weight is the same as Wednesday at 36.5 and his total volume for the whole day was 33.9. He is doing really well with everything! This weekend will be our challenge to see if we can get 50 oz into him both days so he doesn't need to be on the pump and then see what his weight is on Monday. Please keep us in your thoughts that his weight stays up after being off the pump for 2 days in a row. I know I can get him to 50 oz but I don't know if his weight will cooperate. We need to know that his weight won't fluctuate by a pound or more if he's off the pump.
We only have next week and then we'll be on our way home on Friday. I'm so looking forward to getting home and getting into a routine and working with Daniel. There is still so much to do. We really need to find a nutritionist when we get home to help us with additional foods that Daniel might be able to tolerate. We need a balanced diet that includes a more comprehensive list of foods. We'll work on this when we get home.
Also, 3 of the kids that have been here from the date Daniel started graduated this week. I'll write more about all of them when I have more time but I want Emily, Ethan and Joseph to know that we will miss them next week and their moms (Abi, Kelly, and Shilla/Shirley) I will miss you too. These people have become like family in 8 short weeks and I hope that we always remain in touch.
Off to bed (finally) - will update tomorrow.
-Angela-
We only have next week and then we'll be on our way home on Friday. I'm so looking forward to getting home and getting into a routine and working with Daniel. There is still so much to do. We really need to find a nutritionist when we get home to help us with additional foods that Daniel might be able to tolerate. We need a balanced diet that includes a more comprehensive list of foods. We'll work on this when we get home.
Also, 3 of the kids that have been here from the date Daniel started graduated this week. I'll write more about all of them when I have more time but I want Emily, Ethan and Joseph to know that we will miss them next week and their moms (Abi, Kelly, and Shilla/Shirley) I will miss you too. These people have become like family in 8 short weeks and I hope that we always remain in touch.
Off to bed (finally) - will update tomorrow.
-Angela-
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