When Eve woke up yesterday she was doing alright. But when I gave her Prilosec, she started gagging and thrusting her tongue out. Her brow wrinkled and she looked uncomfortable. So, I gave her Zofran again which seemed to help. I waited about 20 minutes and gave her the rest of her meds and then sent her to school. She did well at school.
The GI called at the end of the afternoon while I was in the grocery store (this always seems to happen!). He said that the x-ray showed that the tube was in place and that there was a little bit of constipation. Because she is not retching all of the time, he said he's not comfortable removing the gj tube yet (I didn't know that was on the table). His recommendation for now is to give her the Prilosec in early afternoon rather than first thing in the morning. I asked him if she can still have the valium and Prozac in the morning and he said yes. That doesn't make sense to me, but whatever.
At 5:30am this morning, Eve woke up. SHe was doing tongue thrusts and looked uncomfortable. She emphatically told me she didn't want her leg medicine (Valium). She said she did want her diaper changed (which was just wet). She rested after that and was quiet until 7:30.
So far this morning I have given her the Valium and Prozac and haven't seen any gagging. Her feeds are going fine. I'll give her the Prilosec at 1pm.
Oh, and I called the salesman to get started on the van purchase. :)
Saturday, September 29, 2012
Thursday, September 27, 2012
Here are a few pictures to balance the information that I've been posting lately.
Seamus decided to help with the laundry and climbed into the basket by himself. Thanks, son.
While Eve was in the hospital, her classmates made her some wonderful drawings. Eve and Jim hung them up in her room so she can admire them every day.
Tonight, Seamus was being silly and walking around with a bucket on his head.
He's also very good at Downward Dog. A little yogi in the making. Can you see that belly? Oh, my.
Seamus decided to help with the laundry and climbed into the basket by himself. Thanks, son.
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Tonight, Seamus was being silly and walking around with a bucket on his head.
I talked to the GI. He sent us for an xray this afternoon to see if the tube slipped out of place. I doubt it, because then she would have vomited formula rather than just foamy saliva.
I gave her Zofran when she got home from school and it seems to have helped with the gagging. We'll see how tonight goes.
I'm supposed to touch base with the doctor tomorrow morning.
You know, for as hard as things are right now, I still feel like things have been working out. I still can't get over our luck that my mom was in town when we had to go to the hospital in Springfield. Today, we got to the x-ray department and were told there was a very long wait because they were getting hit from the ER. I was worried we wouldn't be able to get the x-ray before they closed. The next thing I knew, the tech came out and said she was going to sneak us in between patients. She remembered us from last time and remembered how good Eve was. We were in and out in less than 3 minutes (no joke). Because we were being fit in, I didn't ask to see the image to see for myself if the tube was out of place. I was just so grateful.
I gave her Zofran when she got home from school and it seems to have helped with the gagging. We'll see how tonight goes.
I'm supposed to touch base with the doctor tomorrow morning.
You know, for as hard as things are right now, I still feel like things have been working out. I still can't get over our luck that my mom was in town when we had to go to the hospital in Springfield. Today, we got to the x-ray department and were told there was a very long wait because they were getting hit from the ER. I was worried we wouldn't be able to get the x-ray before they closed. The next thing I knew, the tech came out and said she was going to sneak us in between patients. She remembered us from last time and remembered how good Eve was. We were in and out in less than 3 minutes (no joke). Because we were being fit in, I didn't ask to see the image to see for myself if the tube was out of place. I was just so grateful.
I just got off the phone with Eve's mito doctor. He said to look at this decline from two perspectives.
1. Because she wasn't getting the proper nutrition (maybe because she wasn't able to eat well due to her muscle weakness), we saw a rapid decline in gut function. Once she gets the proper nutrition, she may bounce back to a degree and regain some functioning/skills.
2. This decline may be neurologically based and evidence of disease progression. If that's the case, there is nothing we can do other than to make her comfortable. He confirmed that this is a serious situation.
I reminded him that never in her life has she regained any skills that she has lost. I am not trying to be pessimistic, but rather realistic. He suggested that eve see one of three motility doctors in Boston. I'm going to call the GI doc today and tell him about this conversation to see if he can facilitate a quick appointment. A motility doctor can prescribe a medication that can improve motility in upper or lower gut. This can help with her nutrition in scenario 1. He also said that we could put her in the hospital for a week on IV nutrition. If we see an improvement in her functioning (i.e., if she becomes the kid she was before this decline and less disconnected), then we know it's a nutrition based decline. If there is no change in her, then we know this is disease progression. He felt this would save us months and months of intervention and would give us a quick answer. I'm going to talk to the GI and see what he thinks. I think I'm not ready for another hospital stay. I asked the mito doc if we could see how the j-tube feeds go a little longer. He said that's fine. If we can get her up to her optimal intake (we are 80% right now), then that would be the same thing.
If we find that this is a neurologically based decline, we would put her on the j-tube nutrition that she can tolerate.
I just got a call from the school nurse. Eve has been retching all morning. I had her stop the j-tube feeds and flush the tube. I have a call in to the GI and am waiting for him to call me back.
1. Because she wasn't getting the proper nutrition (maybe because she wasn't able to eat well due to her muscle weakness), we saw a rapid decline in gut function. Once she gets the proper nutrition, she may bounce back to a degree and regain some functioning/skills.
2. This decline may be neurologically based and evidence of disease progression. If that's the case, there is nothing we can do other than to make her comfortable. He confirmed that this is a serious situation.
I reminded him that never in her life has she regained any skills that she has lost. I am not trying to be pessimistic, but rather realistic. He suggested that eve see one of three motility doctors in Boston. I'm going to call the GI doc today and tell him about this conversation to see if he can facilitate a quick appointment. A motility doctor can prescribe a medication that can improve motility in upper or lower gut. This can help with her nutrition in scenario 1. He also said that we could put her in the hospital for a week on IV nutrition. If we see an improvement in her functioning (i.e., if she becomes the kid she was before this decline and less disconnected), then we know it's a nutrition based decline. If there is no change in her, then we know this is disease progression. He felt this would save us months and months of intervention and would give us a quick answer. I'm going to talk to the GI and see what he thinks. I think I'm not ready for another hospital stay. I asked the mito doc if we could see how the j-tube feeds go a little longer. He said that's fine. If we can get her up to her optimal intake (we are 80% right now), then that would be the same thing.
If we find that this is a neurologically based decline, we would put her on the j-tube nutrition that she can tolerate.
I just got a call from the school nurse. Eve has been retching all morning. I had her stop the j-tube feeds and flush the tube. I have a call in to the GI and am waiting for him to call me back.
Sunday, September 23, 2012
The past two nights have went well. Eve is tolerating her feedings. We've also changed her sleeping position. I bought a wedge pillow and placed it under the mattress. She now sleeps on her back, with blankets and pillows keeping her from falling over to the sides. The incline seems to be comfortable for her.
She's been getting 50ml an hour of formula for 20 hours and then gets a 4 hour break before we start it over. Soon, we will work up to 60ml so that she gets the calories she needs. I bought a backpack made especially for the pump so it can go to school with her (the pump was on a huge IV pole). It's pretty cool.
We're both happy to be home.
She's been getting 50ml an hour of formula for 20 hours and then gets a 4 hour break before we start it over. Soon, we will work up to 60ml so that she gets the calories she needs. I bought a backpack made especially for the pump so it can go to school with her (the pump was on a huge IV pole). It's pretty cool.
We're both happy to be home.
Friday, September 21, 2012
Thursday, September 20, 2012
Jim is on his way to spend the night so I can go home, shower, and sleep in my own bed tonight. I'm also anxious to see Seamus and my mom.
The plan is to work up to 50 ml an hour of formula through the j tube and see how she tolerates it. If all goes well we hope to be sent home tomorrow. Eve is doing very well right now.
The plan is to work up to 50 ml an hour of formula through the j tube and see how she tolerates it. If all goes well we hope to be sent home tomorrow. Eve is doing very well right now.
Wednesday, September 19, 2012
We've had a very long day of waiting around. During that time Eve was able to check in on her classroom via FaceTime. It was so fun to see and hear her teachers and classmates. Technology is amazing.
Also, I want to thank all of you for the kind wishes and offers of help. I feel so fortunate. We were supposed to be in Boston today for Eve's urodynamic testing, so my mom is visiting to help with Seamus. What amazing luck that the day she came up to help was the day we were sent to the hospital.
So, it looks like we will be here for the rest of the week. They don't have a low profile gj tube that fits her, and that would take several days to get in (during which time we would need to figure something else out like a n-j tube). Instead of waiting, they are doing a non low profile tube. I'm not exactly sure what that will look like. When she gets the tube in, she will be running on continuous feeds around the clock. If all goes well, we are hoping to have the tube placed tomorrow and to be able to go home Friday. Otherwise, they will place it Friday and we'll go home Saturday. That of course assumes that the placement goes well and the tube works for Eve.
The dr has also ordered food for her though the gtube tonight until midnight. They'll start very very slow just to get something in her. They will stop at midnight to be prepared for the possible placement of the tube tomorrow. But at least she'll get a little bit of something. It's been 42 hours at this point since she last had something.
The neurologist also stopped by today. It was so great to see him because he was just checking in on her. He examined her and spent time talking with me. He confirmed that this is a very serious time for Eve. The shutting down of her GI system is scary stuff.
On a happy note, I heard today that we were approved for the loan for the wheelchair van. Once we figure out what's going on with Eve we'll move on to that.
Also, I want to thank all of you for the kind wishes and offers of help. I feel so fortunate. We were supposed to be in Boston today for Eve's urodynamic testing, so my mom is visiting to help with Seamus. What amazing luck that the day she came up to help was the day we were sent to the hospital.
So, it looks like we will be here for the rest of the week. They don't have a low profile gj tube that fits her, and that would take several days to get in (during which time we would need to figure something else out like a n-j tube). Instead of waiting, they are doing a non low profile tube. I'm not exactly sure what that will look like. When she gets the tube in, she will be running on continuous feeds around the clock. If all goes well, we are hoping to have the tube placed tomorrow and to be able to go home Friday. Otherwise, they will place it Friday and we'll go home Saturday. That of course assumes that the placement goes well and the tube works for Eve.
The dr has also ordered food for her though the gtube tonight until midnight. They'll start very very slow just to get something in her. They will stop at midnight to be prepared for the possible placement of the tube tomorrow. But at least she'll get a little bit of something. It's been 42 hours at this point since she last had something.
The neurologist also stopped by today. It was so great to see him because he was just checking in on her. He examined her and spent time talking with me. He confirmed that this is a very serious time for Eve. The shutting down of her GI system is scary stuff.
On a happy note, I heard today that we were approved for the loan for the wheelchair van. Once we figure out what's going on with Eve we'll move on to that.
Tuesday, September 18, 2012
At Baystate
Eve and I are at Baystate hospital.
The nurse called from school today. Eve was gagging and spit up a bit, and it apparently smelled like fecal matter. We called the pediatrician who was more concerned that eve had only had one can of formula in the past 24 hours. She called the GI and after a little back and forth, they decided to have her admitted at Baystate hospital in Springfield (1.5 hours from where we live). Soooo...we packed a bag (or two....you never know) and headed here. We were in the ER for about 4 hours waiting for a room. While we were there Eve got another X-ray of her abdomen and a quick bag of fluids.
It's wierd explaining our situation. Some of the ER docs were talking about looking f or obstruction or infection to look for a cause for eve not tolerating her feeds. I finally looked at one young dr and told her, "I don't expect there to be infection. This is what's happening to her because of the mito. Her systems are shutting down until she dies.". I didn't mean to be harsh, but I had lost patience. So, now we are in a room and trying to rest. Eve is squirming in bed. I don't expect to get much sleep tonight.
Tomorrow we will see the GI. I'm hopeful that we will get a gj tube during our stay. I'll keep updating the blog. Feel free to call. I have my cell.
The nurse called from school today. Eve was gagging and spit up a bit, and it apparently smelled like fecal matter. We called the pediatrician who was more concerned that eve had only had one can of formula in the past 24 hours. She called the GI and after a little back and forth, they decided to have her admitted at Baystate hospital in Springfield (1.5 hours from where we live). Soooo...we packed a bag (or two....you never know) and headed here. We were in the ER for about 4 hours waiting for a room. While we were there Eve got another X-ray of her abdomen and a quick bag of fluids.
It's wierd explaining our situation. Some of the ER docs were talking about looking f or obstruction or infection to look for a cause for eve not tolerating her feeds. I finally looked at one young dr and told her, "I don't expect there to be infection. This is what's happening to her because of the mito. Her systems are shutting down until she dies.". I didn't mean to be harsh, but I had lost patience. So, now we are in a room and trying to rest. Eve is squirming in bed. I don't expect to get much sleep tonight.
Tomorrow we will see the GI. I'm hopeful that we will get a gj tube during our stay. I'll keep updating the blog. Feel free to call. I have my cell.
Eve had her 7 year well visit yesterday. She's lost another pound in the last 2 weeks. She's down to 36.6 from 41 a year ago.
Yesterday at school, the nurse couldn't get Eve's whole feed in. She started gagging on the last 2oz. They tried again an hour and a half later, and those 2oz wouldn't go in (via gravity feed). Oh, and there was still formula in her stomach when they started the whole process from 5.5 hours earlier.
Last night Eve woke up retching at 12:30am. We stopped the pump and got her calmed down. She was able to sleep in her bed for the rest of the night. I didn't turn the pump back on. That is such a tough decision....stop giving her food that she needs or give it to her so she can vomit it up and be unable to sleep in her bed because of constant retching? So, she only got about 1 can of formula. We're just sick with worry.
The pediatrician is going to call the GI to talk to him about the situation. I told her that no one seems to feel the same sense of urgency that I do. Eve is just so lethargic and her hair is falling out. I'll also talk to the pediatric palliative care nurse today.
On a positive note, Eve is still able to laugh. A lot. She actually made Jim mad on Sunday. He was installing a new front door and ran into a snag. She laughed her butt off at him. Gave herself the hiccups.
Yesterday at school, the nurse couldn't get Eve's whole feed in. She started gagging on the last 2oz. They tried again an hour and a half later, and those 2oz wouldn't go in (via gravity feed). Oh, and there was still formula in her stomach when they started the whole process from 5.5 hours earlier.
Last night Eve woke up retching at 12:30am. We stopped the pump and got her calmed down. She was able to sleep in her bed for the rest of the night. I didn't turn the pump back on. That is such a tough decision....stop giving her food that she needs or give it to her so she can vomit it up and be unable to sleep in her bed because of constant retching? So, she only got about 1 can of formula. We're just sick with worry.
The pediatrician is going to call the GI to talk to him about the situation. I told her that no one seems to feel the same sense of urgency that I do. Eve is just so lethargic and her hair is falling out. I'll also talk to the pediatric palliative care nurse today.
On a positive note, Eve is still able to laugh. A lot. She actually made Jim mad on Sunday. He was installing a new front door and ran into a snag. She laughed her butt off at him. Gave herself the hiccups.
Monday, September 17, 2012
grrrr
Lesson learned: Don't worry about being a pain. Follow up!!!
I hadn't heard anything about the wheelchair van loan application I faxed in 2 weeks ago, so I called this morning. They never got it!!!!
I should have called to confirm receipt. Grrrrrr.....
Oh, well. I'll try again this afternoon.
Eve is still hanging in there. She had a good night last night. I was able to run the pump as planned (I've been having to shut it off early lately because of gagging).
I hadn't heard anything about the wheelchair van loan application I faxed in 2 weeks ago, so I called this morning. They never got it!!!!
I should have called to confirm receipt. Grrrrrr.....
Oh, well. I'll try again this afternoon.
Eve is still hanging in there. She had a good night last night. I was able to run the pump as planned (I've been having to shut it off early lately because of gagging).
Friday, September 14, 2012
We're hanging in there. We've been continuing the 3 hours on, 1 hour off feedings throughout the night. This morning, Eve was up at 5am this morning gagging and crying out. We gave her some valium and changed her diaper, but she was still gagging after that. So I got her up and put her in her chair and here we sit.
Yesterday the GI nurse called me to check on the size of Eve's mickey button (current g tube). She needed to know as part of the process of setting up the g-j placement. I asked her about the process and she said it might take a few weeks to set it up. I reminded her that Eve is eating very little (half of the calories/nutrition that the doc wants her to). She made a note and will tell the doctor. If he decides Eve can't sustain functioning on that level, I guess he'll make it happen sooner. As it is, she is so very lethargic. I would be too if I was getting 600 calories a day. Granted, her calorie needs are much fewer than mine due to her size and lack of mobility.
Yesterday the GI nurse called me to check on the size of Eve's mickey button (current g tube). She needed to know as part of the process of setting up the g-j placement. I asked her about the process and she said it might take a few weeks to set it up. I reminded her that Eve is eating very little (half of the calories/nutrition that the doc wants her to). She made a note and will tell the doctor. If he decides Eve can't sustain functioning on that level, I guess he'll make it happen sooner. As it is, she is so very lethargic. I would be too if I was getting 600 calories a day. Granted, her calorie needs are much fewer than mine due to her size and lack of mobility.
Wednesday, September 12, 2012
We only got through about a can and a quarter of formula last night. She woke up gagging at 3am and I immediately shut off the pump. I also had to give her more Valium because she was cramping up and in pain. We haven't seen that at night in a while....really since we've been doing the Valium every 4 hours during the day. She rested comfortably after that.
Tuesday, September 11, 2012
Eve had a better night last night and rested comfortably. Jim and I took turns getting up to turn on and off the pump.
The GI called late this afternoon. The x ray did not show any constipation. So that means she is not tolerating her food. He said it's time for a gj tube. So his staff will work on scheduling that and it will have to be done at Baystate.
I hate being right sometimes.
The GI called late this afternoon. The x ray did not show any constipation. So that means she is not tolerating her food. He said it's time for a gj tube. So his staff will work on scheduling that and it will have to be done at Baystate.
I hate being right sometimes.
Monday, September 10, 2012
more x rays
I talked with the GI doc this afternoon. He sent us to the hospital for more x rays. I didn't realize this, but just because Eve is having diarrhea doesn't mean she isn't still impacted. She can be still corked up (and not entirely cleaned out...things can sneak by the cork) and that can make her not tolerate her food. So, he'll get the x ray in the morning. In the meantime, we need to run her pump for three hours on and one hour off overnight tonight to give her system periods of rest. So, I'll run it from 6:30-9:30pm and shut it off from 9:30-10:30. Then turn it on until 1:30, etc.
As for her not tolerating her food, he wants to see if it's 'a' problem and not 'the' problem. In otherwords, is there constipation causing her to retch, or is her system shutting down and not tolerating food (which is my fear).
I'm really struggling with this. The worry is a constant weight.
Here's hoping we have a good night tonight.
As for her not tolerating her food, he wants to see if it's 'a' problem and not 'the' problem. In otherwords, is there constipation causing her to retch, or is her system shutting down and not tolerating food (which is my fear).
I'm really struggling with this. The worry is a constant weight.
Here's hoping we have a good night tonight.
So much for doing well.
I wrote too soon.
Last night Eve was up at about 3:30 gagging and retching. I stopped her feeding pump (she had gotten about 2/3 of the bag). We changed her diaper and comforted her. I pulled out the contents of her stomach and she had about 1.5 ounces of formula in there. I left it out. We tried to go back to bed, but then she was heaving with her whole body convulsing. Nothing but a lot of saliva came up (I had emptied her stomach). She wasn't able to lay down after that because she would retch every time. So, we put her in her wheelchair and brought her into the living room. Jim slept on the couch next to her and she dosed a bit. She did much better sitting up. She's still a little gaggy, but doing much better. I"m going to send a can of formula in to school with strict instructions to go very slow. I'll also put in a call to the GI. I'm wondering about an anti-nausea medicine and when is it time to look into a gj tube.
I also need to call the mito doc and update him on Eve's regression.
Fortunately, the pediatric palliative care nurse is coming over this afternoon.
I wrote too soon.
Last night Eve was up at about 3:30 gagging and retching. I stopped her feeding pump (she had gotten about 2/3 of the bag). We changed her diaper and comforted her. I pulled out the contents of her stomach and she had about 1.5 ounces of formula in there. I left it out. We tried to go back to bed, but then she was heaving with her whole body convulsing. Nothing but a lot of saliva came up (I had emptied her stomach). She wasn't able to lay down after that because she would retch every time. So, we put her in her wheelchair and brought her into the living room. Jim slept on the couch next to her and she dosed a bit. She did much better sitting up. She's still a little gaggy, but doing much better. I"m going to send a can of formula in to school with strict instructions to go very slow. I'll also put in a call to the GI. I'm wondering about an anti-nausea medicine and when is it time to look into a gj tube.
I also need to call the mito doc and update him on Eve's regression.
Fortunately, the pediatric palliative care nurse is coming over this afternoon.
Sunday, September 9, 2012
Eve has done pretty well on the feeding pump. We got her system cleared out with laxatives and now she is on a maintenance dose. I still need to fiddle with it because her poops are not solid yet. I've been working up to the recommended amount of formula in her tube. Right now she gets most of it overnight (we run the pump from 6pm to 7am) and this weekend she got another can of formula through the pump from 11am-1pm. I need to figure out a solution for school. I"m planning on having Eve be on nearly continuous feeds, but we have to get her pump to school. Right now it's on a big honking IV pole. They make little backpacks for pumps, but I have to look into that. I'm not sure if I can use a regular backpack or if it has to be made to fit the pump (to position things a certain way). I'll figure something out so Eve can just bring her pump to school with her. Then we can have a few hours off in the afternoon to let her system rest before starting it all over again.
She's doing pretty well. The gagging stopped. She's on Valium every 4 hours while she's awake and that is really making a difference with her leg cramping up. She's my little trooper and I love her.
She's doing pretty well. The gagging stopped. She's on Valium every 4 hours while she's awake and that is really making a difference with her leg cramping up. She's my little trooper and I love her.
Monday, September 3, 2012
after a trip to the ER, Eve is better
Eve had a quiet night last night. When she woke up, I gave her about 20ml of pedialyte and she started gagging. So, I took her to the doctor in the morning. Her temp was down and her extremities were quite cold and mottled. The doctor listened to her stomach and gut and said that her intestines were remarkably quiet. So, she sent Eve to the hospital for bloodwork and xrays of the chest and abdomen. Bloodwork came back just fine. No sign of infection, and all other things looked normal. The xray didn't show any blockage, but did show that her intestines were full of poop. Top to bottom. (How many people get to say their kid is full of shit?) The Dr. felt that this may explain her intolerance to the feedings (by making her feel very full). So, she called in a script for a glycerin suppository and sent us to the ER for IV fluids.
We were at the ER for 5 hours. Ug. But Eve was a total angel. She was so quiet and good. She just chilled out in her wheelchair and even dozed a little. The put in the IV and took a urine sample to test for a UTI (which she doesn't have). That process was difficult. It took 4 attempts to get the catheter in. Eve was a trooper. Finally, they gave her 20ml of water through her g-tube to see if she would throw it up. She didn't, so we were allowed to go home.
I gave her about an ounce of formula after dinner and it seemed to go down just fine. But I stopped there. Tomorrow morning, I'll give her formula very very slowly. I'll send her to school with just one can of formula (rather than two) and tell them to give it to her very very slowly in the middle of the day. If she starts to retch or gag, then the feeding is over. We'll see how it goes. I'm also calling the GI first thing in the morning to ask for a pump. If she has a feeding pump, we can give her all of her fluids slowly during the 12 hours she's in bed. I think it will be much better to have a slow continuous feed rather than dumping large amounts into her stomach 5 times a day.
So, it was a rough day, but I think things are looking up. Oh, and the suppository was successful when we got home and she got a bit of poop out. However, I know there's a ton more in there! I'm concerned that her intestines aren't working as well as they should, but I think we can manage that with meds if it becomes a problem.
We're hanging in there.
We were at the ER for 5 hours. Ug. But Eve was a total angel. She was so quiet and good. She just chilled out in her wheelchair and even dozed a little. The put in the IV and took a urine sample to test for a UTI (which she doesn't have). That process was difficult. It took 4 attempts to get the catheter in. Eve was a trooper. Finally, they gave her 20ml of water through her g-tube to see if she would throw it up. She didn't, so we were allowed to go home.
I gave her about an ounce of formula after dinner and it seemed to go down just fine. But I stopped there. Tomorrow morning, I'll give her formula very very slowly. I'll send her to school with just one can of formula (rather than two) and tell them to give it to her very very slowly in the middle of the day. If she starts to retch or gag, then the feeding is over. We'll see how it goes. I'm also calling the GI first thing in the morning to ask for a pump. If she has a feeding pump, we can give her all of her fluids slowly during the 12 hours she's in bed. I think it will be much better to have a slow continuous feed rather than dumping large amounts into her stomach 5 times a day.
So, it was a rough day, but I think things are looking up. Oh, and the suppository was successful when we got home and she got a bit of poop out. However, I know there's a ton more in there! I'm concerned that her intestines aren't working as well as they should, but I think we can manage that with meds if it becomes a problem.
We're hanging in there.
Sunday, September 2, 2012
Eve is sick
On Friday, Eve was sent home from school because she threw up most of her feed and had a low grade fever (more on that later). For the rest of the day, I slowly gave her a few more ounces of formula and she did fine. Saturday, I got in four feeds and did them slowly, but she was fine. Today, I got in her morning feed and that was it. When I tried to give her the next feed, she immediately started gagging. I tried to push through just a very little bit at a time, but I stopped after about an ounce. I called the on call nurse through the pediatric palliative care program and she said to try to give 2 oz of formula very slowly and see if she keeps it down. We put Eve down for a nap first. I woke her at 3pm and we tried to give her the little bit of formula slowly, but she started retching and we only got an ounce in. I called the nurse again and she came over. She checked Eve's vitals and listened to her stomach and bowels. Eve continued retching all afternoon even though she wasn't being given anything. She never actually vomited, but that's probably because there was nothing left in her stomach (the nurse checked by pulling out the stomach contents through the tube).
So, when Seamus went to bed, we gave Eve about 10ml of pedialyte with her Valium. After about 25 minute, we put her to bed. She so far has kept it down (it's only 2 tsp) and has been pretty quiet in her bed. The nurse called the on-call pediatrician who said that if Eve started vomiting bile or just vomiting a few times, or if she has stomach pains that we need to take her to the ER. If we weren't able to get in a decent amount of pedialyte (we weren't) we need to call the office first thing in the morning and have her seen by a doctor. So, that's what we are going to do. I'm cautiously optimistic that tonight will go somewhat smoothly, but I have some things together in case I need to make an ER trip.
I'm worried and scared. I don't know if this is a virus or further decline in functioning. I need to focus on the problem at hand and stop letting my mind jump to future problems.
So, when Seamus went to bed, we gave Eve about 10ml of pedialyte with her Valium. After about 25 minute, we put her to bed. She so far has kept it down (it's only 2 tsp) and has been pretty quiet in her bed. The nurse called the on-call pediatrician who said that if Eve started vomiting bile or just vomiting a few times, or if she has stomach pains that we need to take her to the ER. If we weren't able to get in a decent amount of pedialyte (we weren't) we need to call the office first thing in the morning and have her seen by a doctor. So, that's what we are going to do. I'm cautiously optimistic that tonight will go somewhat smoothly, but I have some things together in case I need to make an ER trip.
I'm worried and scared. I don't know if this is a virus or further decline in functioning. I need to focus on the problem at hand and stop letting my mind jump to future problems.
Saturday, September 1, 2012
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