It's getting very frustrating keeping Quinn practically NPO. It seems that the erithromycin isn't doing much more than just the Reglan was doing. though she is able to tolerate 35ml/hr without much problems, if i go any higher than that rate, we tend to fall into some minor issues with gut pain and bloat. Nothing like what it is though when i put her on just solids. I do tend to give her tiny amounts throughout the day if I can. Stuff like popsicles, lollipops, some juices and etc. But meal times for me have to be about the most heartbreaking. She looks at my food and practically begs for it and unfortunately for her, I usually have to say no or just give her a teeny tiny bite. but it's never enough. I've been dealing with some massive temper tantrums. I feel like we are rolling back into the terrible twos. I'm talking kicking, screaming fits. And it does usually involve meal times. She's sitting in the corner right now throwing another massive fit because she says to me as I'm preparing her tube feeding "I want real food!!! I don't want that!!!" and i have to tell her that I can give her a little tiny bit of real food, but we have to put the feeding tube on. And well, that started it. The massive fit has been going on for about 15 minutes. and she is punching her backpack saying "I DON'T LIKE IT!!!" No, she isn't like this every day, but days like this make me want to dig a nice deep hole in the dirt and bury that damn thing. I hope that one day, we can find some way to make it to where she can eat something.
I've been so sick for the past few days. finally, i'm feeling better, but i think i passed my illness down to Quinn. She has been sleeping all morning! like just falling asleep on the couch, which is so not like her, it can only mean one thing... the booger is fighting off something probably this virus. I hope it doesn't kick her butt.
She had her swallow function study done with the speech therapist. She feels that Quinn's swallow is good, however her oral motor function is not that great. She STILL pockets her food, thrusts her tongue, and lacks coordination in chewing. Even though I do nothing but work with her on her swallow when she CAN eat. But at this point in time, since she's unable to eat anyway, there's really no reason to worry about her oral motor function. if it sucks, it really doesn't matter. as long as she is safely swallowing liquids. So she is scheduled to have a Modified Barium Swallow Study on the 7th. i really HOPE that she is swallowing liquids safely as i would HATE HATE HATE to take the ONLY thing that we can give her away.
Wednesday, March 31, 2010
Tuesday, March 16, 2010
Long and Grueling Day
today was sucky~ First, i finally passed out at 4am!!! I woke up at 645am and had to give Quinn eyedrops to dilate her eyes for the opthalmology appointment at 9am. So we started heading there around 745am. got there a little late. Was having issues getting out the door on time... oooppss. so we get there around five minutes late, wait in line and finally check in at 922 am. Quinn had a neurology appointment 15 minutes away at 1030. we were suppose to be in and out of there. At 1000, i started complaining about my wait time, then we finally were taken back at 1010. I asked them how long this was oging to take, they looked at her eyes for a minute and said that the doc would be in there to determine if she needed glasses or was experiencing degeneration in her eyes. Well, 1025 rolled by, we didn't see a doc so I just left!!!! Quinn's neurology appointment is WAY more important than an eye doctor appointment. We arrived at neuro 10 minutes later :( ugh!!! i was so pissed!!! I dilated her eyes for no apparent reason!!! And we woke up super early because of it. I guess the only cool thing is that Quinn slept the ENTIRE TIME!!! literally. she slept when we left, she was snoring in her umbrella stroller while in the wait room, woke up enough for a little eye exam, then slept on the way to neuro and slept in the stroller and woke up again when they were getting her vitals. So silly! she honestly has been having a rough couple days, but i think ti's because I fed her pizza on Saturday... shame on me :( it's so hard to not give her food!
So anyway, the neurologist: She said that she thinks Quinn has MITO and should be on the MITO cocktail. LMAO!!! i'm sorry. I can only think humorously about this in order to not get pissed. I wonder how many times I have mentioned that I felt that she had something called MITO and how many times eyes have been rolled or I have been laughed at. So anyways... she was explaining to me about all the chaos from January's hospitalization. She said that it was a madhouse in Loma Linda and that she was trying to get Quinn admitted, but it was impossible. So she was sent to CHOC. She first asked me what I thought of CHOC. I said the nursing staff was great but I hated the doctors. She said that she had some major issues with the residents as they had no idea how to treat a child with seizures and all the issues Quinn had. She felt that quinn was discharged way too fast (2days in ER and finally admitted to CHOC and was dishcarged in 24hours) She said the residents called her every hour and during the night about how they are suppose to treat a child like Quinn... and then they discharged her, before she was really that well. She wasn't even walking unsupported when they discharged us! I think they just didn't want to deal with us because I was really pressing the issue on trying to get her accurately diagnosed so we can know what we are treating here. Anyway... too bad all that played out like that.
so, I updated her on what's been going on the last few months. Things suck. All her EEGs have come back not really clean, but not really indicating seizures. However, we KNOW she has serious full blown grand mals. It's documented in hospital, on 911 records and of course, we have one of them video taped. She still wants to try for another EEG to see if we can pinpoint the best way to treat her seizures and what meds will help. However given the fact that Quinn hasn't had a seizure since she was put on o2 24/7, she thinks strongly that it is related to her respiratory drive. Even then, Quinn is going to have yet another EEG.
And about her MRI from a year ago, the one that only showed an abnormally bright white matter and was "essentially normal"... but wasn't too much to indication leukoencephalopathy... well, that's a big red flag for MNGIE, which is what she is being worked up for. It's likely leukoencephalopathy, but the doc feels that she is pretty high functioning cognitively so we aren't officially going to diagnose her since it was just a little off and not a lot. She will have a repeat brain MRI in six months or so. The doc is concerned with putting her under too many times due to her central apnea and oxygen dependency. If the tests for MNGIE come back indicating that MNGIE is unlikely, she wants us to go through with a muscle biopsy... which might be a good time to do her MRI... She feels strongly as well that Quinn does in fact have MITO. She also talked about the geneticist that we saw when Quinn was two... and I told her that the geneticist said that Quinn is the healthiest kid he sees and she said "well that's not very helpful".
We are to follow up in 2 months.
She gave us a prescription for a medical stroller :) and one to get her started in physical therapy.
Quinn's belly is giving her problems... AGAIN!!! on only 35ml/hr of formula. i hope it's just a fluke and something she just needs to work out of her system, but omg! seriously! I'm getting so tired of this. It's stressing me out! she begs me for food. she says her tummy is hungry and when I give in and give her food, she suffers because of it! I just HATE not being able to feed her. I feel terrible eating in front of her.
This weekend, Quinn went bowling for the first time with mommy and Joe. Joe is SSSOOOOO good with her! he's amazing! and she loves him.
And to end the entire day... a little good news and a little sad news. I had to say goodbye to my super awesome VW GTI. Unfortunately, Quinn's needs are not practical for that car anymore and it is getting harder for me to put her in the tiny two door car. Plus, her having oxygen and feeding tube, things just don't fit in the trunk for a day out at doctors' appointments or things like that.
Goodbye my sexy car
Say HELLOOOO to my NEW baby! :)
So anyway, the neurologist: She said that she thinks Quinn has MITO and should be on the MITO cocktail. LMAO!!! i'm sorry. I can only think humorously about this in order to not get pissed. I wonder how many times I have mentioned that I felt that she had something called MITO and how many times eyes have been rolled or I have been laughed at. So anyways... she was explaining to me about all the chaos from January's hospitalization. She said that it was a madhouse in Loma Linda and that she was trying to get Quinn admitted, but it was impossible. So she was sent to CHOC. She first asked me what I thought of CHOC. I said the nursing staff was great but I hated the doctors. She said that she had some major issues with the residents as they had no idea how to treat a child with seizures and all the issues Quinn had. She felt that quinn was discharged way too fast (2days in ER and finally admitted to CHOC and was dishcarged in 24hours) She said the residents called her every hour and during the night about how they are suppose to treat a child like Quinn... and then they discharged her, before she was really that well. She wasn't even walking unsupported when they discharged us! I think they just didn't want to deal with us because I was really pressing the issue on trying to get her accurately diagnosed so we can know what we are treating here. Anyway... too bad all that played out like that.
so, I updated her on what's been going on the last few months. Things suck. All her EEGs have come back not really clean, but not really indicating seizures. However, we KNOW she has serious full blown grand mals. It's documented in hospital, on 911 records and of course, we have one of them video taped. She still wants to try for another EEG to see if we can pinpoint the best way to treat her seizures and what meds will help. However given the fact that Quinn hasn't had a seizure since she was put on o2 24/7, she thinks strongly that it is related to her respiratory drive. Even then, Quinn is going to have yet another EEG.
And about her MRI from a year ago, the one that only showed an abnormally bright white matter and was "essentially normal"... but wasn't too much to indication leukoencephalopathy... well, that's a big red flag for MNGIE, which is what she is being worked up for. It's likely leukoencephalopathy, but the doc feels that she is pretty high functioning cognitively so we aren't officially going to diagnose her since it was just a little off and not a lot. She will have a repeat brain MRI in six months or so. The doc is concerned with putting her under too many times due to her central apnea and oxygen dependency. If the tests for MNGIE come back indicating that MNGIE is unlikely, she wants us to go through with a muscle biopsy... which might be a good time to do her MRI... She feels strongly as well that Quinn does in fact have MITO. She also talked about the geneticist that we saw when Quinn was two... and I told her that the geneticist said that Quinn is the healthiest kid he sees and she said "well that's not very helpful".
We are to follow up in 2 months.
She gave us a prescription for a medical stroller :) and one to get her started in physical therapy.
Quinn's belly is giving her problems... AGAIN!!! on only 35ml/hr of formula. i hope it's just a fluke and something she just needs to work out of her system, but omg! seriously! I'm getting so tired of this. It's stressing me out! she begs me for food. she says her tummy is hungry and when I give in and give her food, she suffers because of it! I just HATE not being able to feed her. I feel terrible eating in front of her.
This weekend, Quinn went bowling for the first time with mommy and Joe. Joe is SSSOOOOO good with her! he's amazing! and she loves him.
And to end the entire day... a little good news and a little sad news. I had to say goodbye to my super awesome VW GTI. Unfortunately, Quinn's needs are not practical for that car anymore and it is getting harder for me to put her in the tiny two door car. Plus, her having oxygen and feeding tube, things just don't fit in the trunk for a day out at doctors' appointments or things like that.
Goodbye my sexy car
Say HELLOOOO to my NEW baby! :)
Sunday, March 14, 2010
The past few months
I created this blog so that way family and friends have an easier way to read up on the happenings of Quinn. So many people have touched our lives in so many ways throughout this journey, teachers, nurses, family, friends, even some friends we have never met in person. Thank you for all the prayers and support.
So, 2009 was Quinn's super healthy year. Although I kinda still had a feeling that things weren't quite right, I felt that Quinn was getting better and doing very well and by the end of the year, we felt that it was safe enough to continue to watch her thrive and slowly wean her from her medications, oxygen, and g-tube. Unfortunately, this was too much for Quinn's body and during our g-tube wean, Quinn started having grand-mal seizures in January. She had a series of multiple seizures in a matter of 3 days and Quinn was taken to the hospital by ambulance due to the seizures. There, she continued to seize and was given IV anti-convulsants every six hours and she was diagnosed with another case of pneumonia and an Ileus in her bowels. (which is a fancy word for very slow motility) She was started on IV medications and hospitalized for only three days. She was taken to a different children's hospital than our normal one. Quinn was very sick. She had to have a critical care nurse by her bedside, she could not sit up on her own or walk and was dependent on oxygen. by the time she was discharged, she was walking a little bit with support. When I talked to the neurologist about how i felt that Quinn had a lot of the symptoms of Mitochondrial Myopathy, I was shot down, AGAIN telling me that my daughter was too healthy to have Mito and that if she did have it, she would have never gotten better after she was in the NICU. Funny, Quinn has NOT gotten better since the NICU. She also told me that Quinn would regress with every sickness and would take months, not days to get skills back. She said that looking at her records, Quinn has been chronically sick enough that she would expect Quinn to be sicker by now. So... we left again, loosing faith even more that we would ever get to the bottom of what is going on with Quinn.
Interestingly enough, we had a follow up with her metabolic doctors and they told me that Quinn had a partial mutation of a gene, suggesting that she has a form of Mito called MNGIE. As rare as mito is, MNGIE is the MOST rare form. So she had some more blood drawn to confirm the diagnosis. the doctor seemed pretty confident that this is what we are dealing with as all her symptoms seem to support the diagnosis to a T.
From January to today, we have had two follow ups with Quinn's GI doctor due to her increasingly difficult stomach problems. Quinn's stomach was bloating up terribly, she looked very pale, she was very tired, she had dark circles under her eyes. Though she was gaining weight, she wasn't doing well. The result: Quinn is no longer able to digest table food. She does not have the energy to do so, even on two motility medications and so now she is on a 24/hour continuous g-tube feeding. She also continued to have seizures and her oxygen requirements continued to become more and more frequent and now, Quinn is on oxygen 24/7. Quinn has not been the same since she was sick in January. Her tone is lower, she can get more tired and she can become very lethargic, particularly when I try to feed her regular food or if i try to increase her feeding pump rate. Since Quinn was placed on the continuous feedings and the oxygen, and her seizure medications have been increased, she is doing much better.
She has had follow ups with pulmonary, GI and metabolic. And coming up she has follow ups with neurology, and opthalmology. What is the funniest to me about all this right now is that, all her doctors are telling me that she definitely seems like a Mito kid and now, she has a clinical diagnosis if Mitochondrial Myopathy.
So, 2009 was Quinn's super healthy year. Although I kinda still had a feeling that things weren't quite right, I felt that Quinn was getting better and doing very well and by the end of the year, we felt that it was safe enough to continue to watch her thrive and slowly wean her from her medications, oxygen, and g-tube. Unfortunately, this was too much for Quinn's body and during our g-tube wean, Quinn started having grand-mal seizures in January. She had a series of multiple seizures in a matter of 3 days and Quinn was taken to the hospital by ambulance due to the seizures. There, she continued to seize and was given IV anti-convulsants every six hours and she was diagnosed with another case of pneumonia and an Ileus in her bowels. (which is a fancy word for very slow motility) She was started on IV medications and hospitalized for only three days. She was taken to a different children's hospital than our normal one. Quinn was very sick. She had to have a critical care nurse by her bedside, she could not sit up on her own or walk and was dependent on oxygen. by the time she was discharged, she was walking a little bit with support. When I talked to the neurologist about how i felt that Quinn had a lot of the symptoms of Mitochondrial Myopathy, I was shot down, AGAIN telling me that my daughter was too healthy to have Mito and that if she did have it, she would have never gotten better after she was in the NICU. Funny, Quinn has NOT gotten better since the NICU. She also told me that Quinn would regress with every sickness and would take months, not days to get skills back. She said that looking at her records, Quinn has been chronically sick enough that she would expect Quinn to be sicker by now. So... we left again, loosing faith even more that we would ever get to the bottom of what is going on with Quinn.
Interestingly enough, we had a follow up with her metabolic doctors and they told me that Quinn had a partial mutation of a gene, suggesting that she has a form of Mito called MNGIE. As rare as mito is, MNGIE is the MOST rare form. So she had some more blood drawn to confirm the diagnosis. the doctor seemed pretty confident that this is what we are dealing with as all her symptoms seem to support the diagnosis to a T.
From January to today, we have had two follow ups with Quinn's GI doctor due to her increasingly difficult stomach problems. Quinn's stomach was bloating up terribly, she looked very pale, she was very tired, she had dark circles under her eyes. Though she was gaining weight, she wasn't doing well. The result: Quinn is no longer able to digest table food. She does not have the energy to do so, even on two motility medications and so now she is on a 24/hour continuous g-tube feeding. She also continued to have seizures and her oxygen requirements continued to become more and more frequent and now, Quinn is on oxygen 24/7. Quinn has not been the same since she was sick in January. Her tone is lower, she can get more tired and she can become very lethargic, particularly when I try to feed her regular food or if i try to increase her feeding pump rate. Since Quinn was placed on the continuous feedings and the oxygen, and her seizure medications have been increased, she is doing much better.
She has had follow ups with pulmonary, GI and metabolic. And coming up she has follow ups with neurology, and opthalmology. What is the funniest to me about all this right now is that, all her doctors are telling me that she definitely seems like a Mito kid and now, she has a clinical diagnosis if Mitochondrial Myopathy.
Sunday, March 7, 2010
Working On Site
Please be patient as I continue to make this site better. I'll be starting to post blog updates soon.
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