For the third time in 9 months Audrey has been admitted into the hospital. I hope it is just a strange coincidence that she is here every three months and not a sad prediction of our future. This time we are here because she continues to not tolerate her feedings. It has been over 2 weeks since she was on formula. She is losing more weight each day and today she is so weak she cannot even sit up. I am glad that we came in yesterday, I would be much more panicked today at home if I had found her so weak.
I find myself struggling with the inpatient speed. We have been here for almost 24 hours and we've spoken to many different doctors who are going to contact the other doctors we've spoken to to determine a plan. In the meantime the only thing that has happened is she has an IV with fluids running. I know things run differently here and I know nobody has the sense of urgency that I have. It is my little girl laying here too weak to play. I will remind myself to have a little patience, but not too much as someone needs to advocate for her!
Thursday, April 26, 2012
Monday, April 23, 2012
Unfairness
I know one of these times I will be able to post how well everything is going. It is probably just that when Audrey is feeling well, I am busy enjoying what she is able to do. When she is not well I need to turn to my blog to spew everything that she is going through.
Audrey continues to get sick every other week or so. While we are waiting to see an immune specialist, we are doing our best to keep her healthy. Since her last illness she has not yet made it back to her regular feeds. As a mom, there is nothing so distressing as not being able to feed your child. If I can't do anything else for her I want to at least be able to feed her. But apparently this is a big, long-standing problem for mito kids. Whenever their little bodies are stressed their GI system just stops. I know it's hard to imagine. She has a feeding tube to her stomach, how hard can it be to feed her? Well I can put the formula in but it will just sit in her stomach until she throws up or I vent her and let it all come back out. It's been almost 2 weeks since she was on full formula feeds. This mommy is getting worried! I'm watching her get more tired and lose more weight, knowing we aren't giving her what she needs to get healthy and beat this vicious cycle she seems to be caught in.
For one afternoon Audrey had fun. It was hot on Saturday and though she wasn't tolerating her feeding she woke up from her nap feeling OK. I let her outside with her brother to play in the sprinklers. Normal, 2 year old fun! She played for an hour and though I knew she was quickly burning through her energy stores, I didn't have the heart to stop her. Finally after an hour I made her come in. She quickly collapsed on the couch and there she stayed until bath time. She was wiped out Sunday and Monday also. How sad is a disease where one hour of play causes 2 days of exhaustion?!? It is so unfair that these children endure so much medical stuff all for one hour of play here and there.
In our quest to keep her healthy, we are looking into alternative care for her. She can't go to daycare any longer. Not only does she become ill if someone even looks at her, she just doesn't have the energy for it. When I picked her up today she was a mess. All of her feeding had backed into her bag, she was crying begging to go home and so exhausted she slumped forward in her carseat to suck her thumb since she couldn't lift it up to her mouth.. I can't watch her go through this. I know I've written about our struggles for services for her but it is so unfair! Every program or waiver I look into I get the same answer..."If she has medi-cal she will qualify." Her pediatrician wrote for home nursing care. The insurance company authorized 400hours per calendar year of nursing care. That works out to one 8 hour shift per week. The nursing company said not to worry, we can just put her on medi-cal and they will cover the rest. The problem is she doesn't qualify for medi-cal! We are doing everything in our power to take care of her and remain working, contributing members to society but the system is working against us. Instead of funding programs that help working families keep working, I'm encouraged to quit my job so my child can get what she needs. Unfair!
And that's where I am right now. It's unfair! It's unfair that my daughter can't eat any food. It's unfair that I am unable to provide her with the services she needs. It's unfair that she has to work so hard for just a little fun. It's unfair that she has to be affected by mitochondrial disease at all! No child should have to go through what she, and thousands of other children like her, go through every day. I know that there are many other children who are sicker than her, who are fighting for their lives or have already lost the battle. But right now, for my daughter, all I can say is it's not fair.
Audrey continues to get sick every other week or so. While we are waiting to see an immune specialist, we are doing our best to keep her healthy. Since her last illness she has not yet made it back to her regular feeds. As a mom, there is nothing so distressing as not being able to feed your child. If I can't do anything else for her I want to at least be able to feed her. But apparently this is a big, long-standing problem for mito kids. Whenever their little bodies are stressed their GI system just stops. I know it's hard to imagine. She has a feeding tube to her stomach, how hard can it be to feed her? Well I can put the formula in but it will just sit in her stomach until she throws up or I vent her and let it all come back out. It's been almost 2 weeks since she was on full formula feeds. This mommy is getting worried! I'm watching her get more tired and lose more weight, knowing we aren't giving her what she needs to get healthy and beat this vicious cycle she seems to be caught in.
For one afternoon Audrey had fun. It was hot on Saturday and though she wasn't tolerating her feeding she woke up from her nap feeling OK. I let her outside with her brother to play in the sprinklers. Normal, 2 year old fun! She played for an hour and though I knew she was quickly burning through her energy stores, I didn't have the heart to stop her. Finally after an hour I made her come in. She quickly collapsed on the couch and there she stayed until bath time. She was wiped out Sunday and Monday also. How sad is a disease where one hour of play causes 2 days of exhaustion?!? It is so unfair that these children endure so much medical stuff all for one hour of play here and there.
In our quest to keep her healthy, we are looking into alternative care for her. She can't go to daycare any longer. Not only does she become ill if someone even looks at her, she just doesn't have the energy for it. When I picked her up today she was a mess. All of her feeding had backed into her bag, she was crying begging to go home and so exhausted she slumped forward in her carseat to suck her thumb since she couldn't lift it up to her mouth.. I can't watch her go through this. I know I've written about our struggles for services for her but it is so unfair! Every program or waiver I look into I get the same answer..."If she has medi-cal she will qualify." Her pediatrician wrote for home nursing care. The insurance company authorized 400hours per calendar year of nursing care. That works out to one 8 hour shift per week. The nursing company said not to worry, we can just put her on medi-cal and they will cover the rest. The problem is she doesn't qualify for medi-cal! We are doing everything in our power to take care of her and remain working, contributing members to society but the system is working against us. Instead of funding programs that help working families keep working, I'm encouraged to quit my job so my child can get what she needs. Unfair!
And that's where I am right now. It's unfair! It's unfair that my daughter can't eat any food. It's unfair that I am unable to provide her with the services she needs. It's unfair that she has to work so hard for just a little fun. It's unfair that she has to be affected by mitochondrial disease at all! No child should have to go through what she, and thousands of other children like her, go through every day. I know that there are many other children who are sicker than her, who are fighting for their lives or have already lost the battle. But right now, for my daughter, all I can say is it's not fair.
Friday, April 13, 2012
A sick little girl
We are in the midst of her 4th big illness in the past 8 weeks. Each one lasts a little longer and she gets a little sicker with fewer "well" days between bugs. Today we spent 4 hours at the doctors office. We went to be sure she doesn't have pneumonia. It's day 7 of being ill and she's not looking better. Last night her ear started draining so I knew we needed more ear drops for that. In the morining she started vomiting so I hooked up her venting bag. Its much better if that can keep it all contained! By the time we got to the doctor her venting bag had 200 mls of pedialyte and bile! Her rate is only 35ml/hr so this was the whole days worth! Come to think of it, I hadn't changed a diaper all day. Well a couple X-rays, some labs and they think she may have a little bit of an ileus brought on by her nasty cold and ear infections. So after 4 hours of holding her and carting her around my arms are cramping and she is tired and crabby. Now we are home with our fingers crossed that we can stay here! I cringe when the doctor says "oh you're an NP, I'm comfortable sending her home then." I wish doctors would remember that when I'm sitting in the room with my screaming 2 year old I'm a mom way before a medical professional. So now on top of all of her other medications she has eye drops for pink eye, ear drops for an ear infection, antibiotics because the ear infection is really bad, albuterol nebulizer and to top it all off she got mag citrate and an enema to hopefully get her tummy working. I'm crying right along with her :( I really hope and pray she starts feeling better soon!
Friday, March 30, 2012
House of cards
Life with Audrey continues to be a struggle. In the six weeks since we have returned from her surgery she has only been able to go to daycare four days in a row twice. After each of those weeks she ended up missing the next week due to sickness. In fact Audrey has been sick every week since the week of Valentines. What are we going to do?? For the past month we have been working with her pediatrician to brainstorm different ideas to provide care for her. Since I am the major income earner and I carry the benefits, not working is not an option for me. We seem to fall in this middle America gap where we make too much income to qualify for any assistance but we are unable to afford it ourselves. I can only imagine how many other families find themselves in this same predicament. There are so many programs for low income families it is very discouraging that we can't qualify for anything! Don't get me wrong, those families absolutely need the help but so do we! Audrey also falls into this gap with her disability. She is mildly delayed and has some medical needs. She is 2.5 so we are in transition to the school district. They are afraid she may not be delayed enough to get accepted but are concerned with all her medical issues, without any therapies she will quickly fall behind. Regional Center is in the same boat. She does not have epilepsy or MR so while we are going through their evaluations, we don't think she will qualify for that either. It certainly does not look promising.
So now I'm evaluating my job. Though I have to keep working, and I'm terrified of switching employers and risking a change in insurance, she cannot continue to go to daycare. This week she came down with hand-foot-mouth disease. It's such a common daycare illness, that really every child has at sometime or another. With Audrey though she had fevers over 103, required 1L of oxygen continuously and 6 days later is still not better. She's losing weight and is weak and wobbly. When her body is taxed her speech and thought processes really suffer which leads to frustration on all of our parts as we don't understand what she's telling us. The last illness was just a simple URI with the same dramatic response. We have to find a solution that will work for the whole family and be able to keep her healthier. For the time being my husband and I are switching off days staying home with her. He doesn't have sick time at work so everyday off for him is without pay. He is also less comfortable with the medical aspect of her care, though he is becoming more proficient each day. While I have plenty of sick time and am able to do her medical care, I have a job where I have patients with appointments to see me. If I don't go to work, my work continues on and I have to catch up. If I am not there to see my patients I have to get someone else to see them so it's not an easy thing to just call out sick. Add into this whole mix the emotional strain of watching your toddler go through all of this and it's no wonder we are all walking on eggshells waiting for the shoe to drop. I know sometime soon something has got to give as this situation we are in right now will not last long.
So now I'm evaluating my job. Though I have to keep working, and I'm terrified of switching employers and risking a change in insurance, she cannot continue to go to daycare. This week she came down with hand-foot-mouth disease. It's such a common daycare illness, that really every child has at sometime or another. With Audrey though she had fevers over 103, required 1L of oxygen continuously and 6 days later is still not better. She's losing weight and is weak and wobbly. When her body is taxed her speech and thought processes really suffer which leads to frustration on all of our parts as we don't understand what she's telling us. The last illness was just a simple URI with the same dramatic response. We have to find a solution that will work for the whole family and be able to keep her healthier. For the time being my husband and I are switching off days staying home with her. He doesn't have sick time at work so everyday off for him is without pay. He is also less comfortable with the medical aspect of her care, though he is becoming more proficient each day. While I have plenty of sick time and am able to do her medical care, I have a job where I have patients with appointments to see me. If I don't go to work, my work continues on and I have to catch up. If I am not there to see my patients I have to get someone else to see them so it's not an easy thing to just call out sick. Add into this whole mix the emotional strain of watching your toddler go through all of this and it's no wonder we are all walking on eggshells waiting for the shoe to drop. I know sometime soon something has got to give as this situation we are in right now will not last long.
Sunday, March 4, 2012
What a long month!
Life continues to be so busy! I'm not a great blogger as life seems to get in the way and before I know it 6-8 weeks have gone on since my last entry. So here is a summary of what's going on with us and our sweet girl!
We are adapting to life with a feeding tube. Though I have taken care of babies with g-tubes for years during my time as a NICU nurse and it isn't uncommon for our Cranio kids to need feeding tubes at least temporarily, it's completely different living with one. The day to day cleaning, problem-solving, preparing and planning is just more than you could ever anticipate.Since the tube was placed it has never been comfortable. Whenever it moves or the the tubing moves or any care has to be completed she kicks and screams like she's in terrible pain. At first we thought it was just post surgical pain. Though it isn't usually thought of as being a super painful surgery, every child is different and maybe our girl has a low tolerance level. But as the weeks have gone on the doctors are stumped. We went to the pediatrician and back to the surgeon. The site looks great, there's nothing wrong with the tube, no one knows why it hurts her. Her in-home therapist think it has to do with some sensory input. For some reason she seems to be really bothered by things touching her and maybe this is why she is feeling pain from something that is never more than slightly uncomfortable. Maybe this is true. We've spent months working with her in therapy so that she is able to touch play-d'oh and play with sand. I hope that this is something she will overcome.
Thankfully, we have found some help on facebook! Little did I know about the large world available to parents of special needs children on Facebook. Many enterprising mothers and pediatric nurse have created and sell items that make life easier. We found the site for Belly Buttons and were lucky to be able to order 2 g-tube belts. These are cloth belts worn around the waist over the g-tube site which hold the g-tube secure and keep the tubing in one place. With the belt on the g-tube doesn't spin and the tubing doesn't pull and finally Audrey is comfortable with her tube! This site also sells (as do many others) g-tube pads! What an amazing invention! Instead of piles of spilt gauze and tape, these talented individuals sew little spilt disks of flannel, cotton and absorb able material which stick together with either snaps or Velcro. They come in a variety of patterns and colors including various princesses, pink, hearts etc... Finally with this small thing Audrey has control of one small aspect of her tube, if only which pattern to wear.
Aside from the care of the tube, the use of the tube has been another learning curve. As we have now figured out, when Audrey is tired her little body conserves energy by not processing food. So the days that she is very tired her feeding pump backs up and we have to vent/drain her tube often being surprised as hours of feeds come pouring out. At least now we can see this pattern so when we wake her up in the morning and see how tired she is we know what to expect for the day.
We were able to see the metabolic nutritionist in February. We were relieved to see her weight had improved to where she was before she was sick. We found out that she should be on a low fat diet as her body may have difficulty breaking down fats. So my skinny 2 year old with a feeding tube gets low fat foods, how ironic. We also needed to change her formula to Vivonex from Elecare as it has lower amount of fat but same amount of protein/calories. After more than a month of arguing with the insurance and then the supply company we finally received 5 days worth of formula. So the fight continues as obviously this will not help for long. We are already missing the sweet vanilla smell of Elecare as the smell of Vivonex brings back memories of old preemie puke, as my NICU colleagues will understand.
February brought us the Pasadena Rock-n-Roll half marathon supporting CureMito. It was great to be involved with this program and I was able to raise $400! Unfortunately that was not the $1000 needed to participate in the walk/run but I was OK with that. It was great to see the words "mitochondrial disease" out in the community. I am always amazed at how little known this disease is. My friend made t-shirts for us to wear the day of the raise which featured pictures of her son, who is also affected, and Audrey. We went to the race and supported our friends who were able to participate. We were even interviewed by the local newspaper. Hopefully next year we can participate. I also hope they will create a stroller option so we can have our kids who are so affected out in public to raise more awareness.
The month continued on to have me go back to work! By the time I returned, I really needed the "time off" for my own mental sanity. As bad as it makes me feel for saying so, I find I am unable to be the sole caretaker for my daughter 24 hours a day/7 days a week. With all of the feeding, pulse ox, oxygen, glucose monitoring, temperatures, etc. it's like being a nurse on duty 24/7 and as nurses know, we all get to the point where the money isn't worth one more hour of work. Obviously I'm not getting paid for this, but combine the nursing work with the emotional toll of caring for my girl and I was ready to lose my mind. So February 20th everything was set-up for me to return to work. Yay! The first 2 days went great! I was feeling so much better. Even though I carry a pager and the daycare calls me frequently with questions and she is right on campus with me at work, I was able to have a few hours each day when I didn't have to wonder if her oxygen was ok or if she was tolerating her feeding. While it was never far from my mind, I knew the daycare would call at the first sign of trouble...as they did on the third day.
I knew Wednesday (our 3rd day back) was going to be difficult from the moment I went to wake her up. She was curled in a little ball in her bed and cried when I tried to wake her up. The whole way into work she was slumped over so she didn't have to hold her thumb up to suck and drooling. Yep, big flag, no energy to hold her arm up and oral hypotonia. But I willfully ignored it all. I dropped her off at 8am and they called at 9am the her feeding pump was alarming. Uh-oh :( Sure enough her tummy was full. We shut off her pump for 2 hours and let her lay down in the class and read books (which is all she wanted to do). I ran back to my office to finish the few things I had to get done. By 1130 they were calling again. They had tried turning her pump back on with no success and she was looking very pale. Ok, I admitted failure. I returned to put her O2 on and take her home. Thankfully she was rested enough to be back on Thursday which is my most important day of the week at work. Friday was her therapies at home as usual and she did well. Saturday she woke up with a cough which progressed to a mild fever by the afternoon. Great! After only 3.5 days of daycare she was sick!
This is our first big cold since her mito diagnosis. While thought of metabolic acidosis and dysautonomia swirled in my head, we worked to keep her stable and fight off this cold. Thank heavens for the g-tube!! We were able to keep the fluids going that she really needed and when she wasn't tolerating the formula we were able to mix polycose to essentially create D10 and run that in her g-tube. Our room was quickly converted to a hospital room with her pulse ox on continuously, the oxygen bubbling away and her feeding hanging on an IV pole. We took turns staying up with her and checking her temperature as she has a bad history of going from 99.5 to 105.7 in less than 10 minutes. Tuesday she was tested for influenza which was negative. She continued on in the precarious fight against the common cold. Finally by Friday she was feeling better! Wow, if this is how every cold is going to go we are in trouble! We hope that this was a particularly virulent cold and that is why it hit her so hard. We also have a new appreciation for the g-tube, as she would have been hospitalized without it.
So hear we are. About to start week 3 of work. She only tolerated 3 day during week one, missed week 2 entirely, who knows what's in store for week 3?!? We've been able to adapt so far to our new normal. My son is learning and now knows what to do if we ask for a flush or to tell us when his sister says her head hurts. It breaks our heart that this is what they both have to deal with, Audrey with all her medical interventions and Jake needing to understand it all, but for some reason this is what we have. This month we have so many things to do. Happily we get to journey to Las Vegas for my little brother's wedding! We are all looking forward to this brief break for the routine. Audrey is going to have to see a few more specialists, a nephrologist for her kidneys because she has too much protein in her urine and frequently wakes up swollen. She will also see an ophthalmologist to screen her eyes. Kids with mito disease frequently have vision problems so we need to be sure this is not the case with her. We also get to follow up with her pulmonologist, orthopedic doctor and she gets to meet with the school district as she is 2.5 and will leave Regional center at 3. Wow! Such a busy month, I sure hope we can keep up with it all!!
We are adapting to life with a feeding tube. Though I have taken care of babies with g-tubes for years during my time as a NICU nurse and it isn't uncommon for our Cranio kids to need feeding tubes at least temporarily, it's completely different living with one. The day to day cleaning, problem-solving, preparing and planning is just more than you could ever anticipate.Since the tube was placed it has never been comfortable. Whenever it moves or the the tubing moves or any care has to be completed she kicks and screams like she's in terrible pain. At first we thought it was just post surgical pain. Though it isn't usually thought of as being a super painful surgery, every child is different and maybe our girl has a low tolerance level. But as the weeks have gone on the doctors are stumped. We went to the pediatrician and back to the surgeon. The site looks great, there's nothing wrong with the tube, no one knows why it hurts her. Her in-home therapist think it has to do with some sensory input. For some reason she seems to be really bothered by things touching her and maybe this is why she is feeling pain from something that is never more than slightly uncomfortable. Maybe this is true. We've spent months working with her in therapy so that she is able to touch play-d'oh and play with sand. I hope that this is something she will overcome.
Thankfully, we have found some help on facebook! Little did I know about the large world available to parents of special needs children on Facebook. Many enterprising mothers and pediatric nurse have created and sell items that make life easier. We found the site for Belly Buttons and were lucky to be able to order 2 g-tube belts. These are cloth belts worn around the waist over the g-tube site which hold the g-tube secure and keep the tubing in one place. With the belt on the g-tube doesn't spin and the tubing doesn't pull and finally Audrey is comfortable with her tube! This site also sells (as do many others) g-tube pads! What an amazing invention! Instead of piles of spilt gauze and tape, these talented individuals sew little spilt disks of flannel, cotton and absorb able material which stick together with either snaps or Velcro. They come in a variety of patterns and colors including various princesses, pink, hearts etc... Finally with this small thing Audrey has control of one small aspect of her tube, if only which pattern to wear.
Aside from the care of the tube, the use of the tube has been another learning curve. As we have now figured out, when Audrey is tired her little body conserves energy by not processing food. So the days that she is very tired her feeding pump backs up and we have to vent/drain her tube often being surprised as hours of feeds come pouring out. At least now we can see this pattern so when we wake her up in the morning and see how tired she is we know what to expect for the day.
We were able to see the metabolic nutritionist in February. We were relieved to see her weight had improved to where she was before she was sick. We found out that she should be on a low fat diet as her body may have difficulty breaking down fats. So my skinny 2 year old with a feeding tube gets low fat foods, how ironic. We also needed to change her formula to Vivonex from Elecare as it has lower amount of fat but same amount of protein/calories. After more than a month of arguing with the insurance and then the supply company we finally received 5 days worth of formula. So the fight continues as obviously this will not help for long. We are already missing the sweet vanilla smell of Elecare as the smell of Vivonex brings back memories of old preemie puke, as my NICU colleagues will understand.
February brought us the Pasadena Rock-n-Roll half marathon supporting CureMito. It was great to be involved with this program and I was able to raise $400! Unfortunately that was not the $1000 needed to participate in the walk/run but I was OK with that. It was great to see the words "mitochondrial disease" out in the community. I am always amazed at how little known this disease is. My friend made t-shirts for us to wear the day of the raise which featured pictures of her son, who is also affected, and Audrey. We went to the race and supported our friends who were able to participate. We were even interviewed by the local newspaper. Hopefully next year we can participate. I also hope they will create a stroller option so we can have our kids who are so affected out in public to raise more awareness.
The month continued on to have me go back to work! By the time I returned, I really needed the "time off" for my own mental sanity. As bad as it makes me feel for saying so, I find I am unable to be the sole caretaker for my daughter 24 hours a day/7 days a week. With all of the feeding, pulse ox, oxygen, glucose monitoring, temperatures, etc. it's like being a nurse on duty 24/7 and as nurses know, we all get to the point where the money isn't worth one more hour of work. Obviously I'm not getting paid for this, but combine the nursing work with the emotional toll of caring for my girl and I was ready to lose my mind. So February 20th everything was set-up for me to return to work. Yay! The first 2 days went great! I was feeling so much better. Even though I carry a pager and the daycare calls me frequently with questions and she is right on campus with me at work, I was able to have a few hours each day when I didn't have to wonder if her oxygen was ok or if she was tolerating her feeding. While it was never far from my mind, I knew the daycare would call at the first sign of trouble...as they did on the third day.
I knew Wednesday (our 3rd day back) was going to be difficult from the moment I went to wake her up. She was curled in a little ball in her bed and cried when I tried to wake her up. The whole way into work she was slumped over so she didn't have to hold her thumb up to suck and drooling. Yep, big flag, no energy to hold her arm up and oral hypotonia. But I willfully ignored it all. I dropped her off at 8am and they called at 9am the her feeding pump was alarming. Uh-oh :( Sure enough her tummy was full. We shut off her pump for 2 hours and let her lay down in the class and read books (which is all she wanted to do). I ran back to my office to finish the few things I had to get done. By 1130 they were calling again. They had tried turning her pump back on with no success and she was looking very pale. Ok, I admitted failure. I returned to put her O2 on and take her home. Thankfully she was rested enough to be back on Thursday which is my most important day of the week at work. Friday was her therapies at home as usual and she did well. Saturday she woke up with a cough which progressed to a mild fever by the afternoon. Great! After only 3.5 days of daycare she was sick!
This is our first big cold since her mito diagnosis. While thought of metabolic acidosis and dysautonomia swirled in my head, we worked to keep her stable and fight off this cold. Thank heavens for the g-tube!! We were able to keep the fluids going that she really needed and when she wasn't tolerating the formula we were able to mix polycose to essentially create D10 and run that in her g-tube. Our room was quickly converted to a hospital room with her pulse ox on continuously, the oxygen bubbling away and her feeding hanging on an IV pole. We took turns staying up with her and checking her temperature as she has a bad history of going from 99.5 to 105.7 in less than 10 minutes. Tuesday she was tested for influenza which was negative. She continued on in the precarious fight against the common cold. Finally by Friday she was feeling better! Wow, if this is how every cold is going to go we are in trouble! We hope that this was a particularly virulent cold and that is why it hit her so hard. We also have a new appreciation for the g-tube, as she would have been hospitalized without it.
So hear we are. About to start week 3 of work. She only tolerated 3 day during week one, missed week 2 entirely, who knows what's in store for week 3?!? We've been able to adapt so far to our new normal. My son is learning and now knows what to do if we ask for a flush or to tell us when his sister says her head hurts. It breaks our heart that this is what they both have to deal with, Audrey with all her medical interventions and Jake needing to understand it all, but for some reason this is what we have. This month we have so many things to do. Happily we get to journey to Las Vegas for my little brother's wedding! We are all looking forward to this brief break for the routine. Audrey is going to have to see a few more specialists, a nephrologist for her kidneys because she has too much protein in her urine and frequently wakes up swollen. She will also see an ophthalmologist to screen her eyes. Kids with mito disease frequently have vision problems so we need to be sure this is not the case with her. We also get to follow up with her pulmonologist, orthopedic doctor and she gets to meet with the school district as she is 2.5 and will leave Regional center at 3. Wow! Such a busy month, I sure hope we can keep up with it all!!
Thursday, January 12, 2012
A new year
Wow! Who knew so much could happen in one month?!?! Let me summarize. December continued with Audrey having more and more choking episodes once even requiring me to reach in her throat and pull food out. Obviously this terrified us. She was also taking less and less food and liquids. She continued to experience the episodes where her right arm would go limp and generally weaker on the right side.
On December 19th we were able to have another EEG. These tests are not easy as she has to be up for 12 hours before hand and they are scheduled at 1 in the afternoon. But we were able to finish that and see the ENT doctor who confirmed she still had fluid in her ears. Since we were concerned about this affecting her hearing we decided that if she was to have any procedures done under anesthesia we would put tubes in her ears. If not we didn't want to take the risk for her.
On the 20th she had a repeat MBSS. The test was modified by her OT so she didn't take anything dry like chicken or use a sippy cup which is too fast. This disappointed me because this is her "real" life. Anyways the result showed she had a lot of residue in her mouth and required 3 dry swallows after each bite of food. She could also only take small drinks at a time and only sips after she was fatigued. It was recommended she stick to purees in the evenings when she is more fatigued. As I predicted this did not go over well with my independent 2 year old. She protested us trying to pace her to the point of refusing to eat. She continued to take less and less food and liquid until on the 27th the decision to place a g-tube was made.
This decision was not an easy one to come to. My husband and I struggled with it for days. But finally after fighting for 10 days to get her to drink just enough that she wasn't dehydrated and every meal ending in tears on her part as well as mine, we realized we did not really have a choice after all. We planned to start scheduling her tests for her work up as an outpatient.
On January 2 she woke up so wobbly she could barely stand. She had minimal urine and she was requiring her oxygen frequently. We called the doctor and she was admitted for dehydration. Once we arrived at the hospital we realized just how sick she had been at home. She was hypoglycemic and spilling ketones in her urine. This is a sign of her body burning muscle and fat for energy. Her measurements showed failure to thrive with muscle wasting. After a couple days on IV fluids she was feeling and looking great. Aside from the constant IV pokes she was enjoying her hospital stay. This was probably the best she felt in awhile with her constant glucose infusion.
On January 6th she was scheduled for surgery. We anxiously awaited her time in her hospital room. Thankfully Child Life was there to help Audrey as well as us. Finally off to surgery we went. Since we knew anesthesia would be difficult we planned to do everything she could need. She was scheduled for her muscle biopsy to confirm her diagnosis of mitochondrial disease, tubes for her ears and her g-tube. The anesthesiologist told us all the precautions and things they would change due to her diagnosis. Surgery was quick, about an hour and 20 minutes. Both of the doctors came out to tells us things went great and the recovery room would come and get us as soon as she started to wake up. My husband and I sat in the little room waiting and watching other families come and go. We waited and waited...after an hour we were getting nervous. Finally after an hour and a half the bring us back. There is our sweet girl arching off the bed screaming with a hoarse voice. I quickly pick her up and she goes limp and starts desaturating. They have us hold cool mist oxygen in front of her. The doctor tells us she has had some trouble waking up. She required and oral airway for an hour and then her blood pressure was very low so they had to give her some extra volume. They will not give any pain medicine until she wakes up more. So we sit and hold her. The hours pass and my husband has to leave to pick up her brother from school. Finally 4 hours after surgery, shes not quite awake but they decide she can go back to her room. Once we get up there she wakes up and now we have to fight to get her pain under control. She getting very small doses as everyone is afraid of how sleepy she may get. Finally after 6 doses of morphine she is able to get some rest.
The remainder of her hospital stay went very smoothly. She was able to tolerate the feedings however due to her pre op testing showing very delayed gastric emptying the decision was made to keep her on continuous feedings for awhile. Finally all of our ducks were lined up and she came home on January 10th. Now she walks around with her little back pack providing continuous feedings. She is still able to eat by mouth, however, she rarely takes more than a few bites.
On January 11th we finally were able to meet with her geneticist. This was a much anticipated appointment as he has a 2 year waiting list. The doctor spent a lot of time with us going over our whole family and each symptom Audrey experienced. He also confirmed her diagnosis. Though we knew this to be the case, a small part of us still hoped he would say, "No way she has this awful disease. There has been a big mistake." He stated he thought she's having "mini stroke-like' episodes which are what is causing her arm to go limp and the right sided weakness. He said she has a more severe form of dysautonomia which is causing her desaturations. Her nerves just don't seem to know when she needs more oxygen and when she doesn't. Aside from that, he could only say we hope that her disease regresses or is at least stabilized since she is one treatment. She will probably continue to experience more and more GI problems. He also said she will pass this on to any children she might have. I couldn't even respond to this as it is so far away I can't spear any brain cells to consider what this could mean for her future.
And now finally we have a day off. We have a few days to get used to our new reality of a g-tube and continuous feeding and oxygen and all the meds. Our house is beginning to look like a hospital with oxygen tanks, pulse oximeter, IV pole, feeding pump, cases of formula, and boxes of supplies. If this keeps her home with us and allows her to continue to grow and develop then we can live with this. If this lets her be a "normal" happy two year old full of life then this is our reality. This is what we hope for and think of. We try not to think about how much has changed in the last 6 months. We try not to think about how much progression she has experienced in such a short time and all the symptoms that are constantly popping up. Maybe her doctor is right and now that she is being treated things will get better. This is the beginning of the new year and we can only hope that it will be better then how it started!
On December 19th we were able to have another EEG. These tests are not easy as she has to be up for 12 hours before hand and they are scheduled at 1 in the afternoon. But we were able to finish that and see the ENT doctor who confirmed she still had fluid in her ears. Since we were concerned about this affecting her hearing we decided that if she was to have any procedures done under anesthesia we would put tubes in her ears. If not we didn't want to take the risk for her.
On the 20th she had a repeat MBSS. The test was modified by her OT so she didn't take anything dry like chicken or use a sippy cup which is too fast. This disappointed me because this is her "real" life. Anyways the result showed she had a lot of residue in her mouth and required 3 dry swallows after each bite of food. She could also only take small drinks at a time and only sips after she was fatigued. It was recommended she stick to purees in the evenings when she is more fatigued. As I predicted this did not go over well with my independent 2 year old. She protested us trying to pace her to the point of refusing to eat. She continued to take less and less food and liquid until on the 27th the decision to place a g-tube was made.
This decision was not an easy one to come to. My husband and I struggled with it for days. But finally after fighting for 10 days to get her to drink just enough that she wasn't dehydrated and every meal ending in tears on her part as well as mine, we realized we did not really have a choice after all. We planned to start scheduling her tests for her work up as an outpatient.
On January 2 she woke up so wobbly she could barely stand. She had minimal urine and she was requiring her oxygen frequently. We called the doctor and she was admitted for dehydration. Once we arrived at the hospital we realized just how sick she had been at home. She was hypoglycemic and spilling ketones in her urine. This is a sign of her body burning muscle and fat for energy. Her measurements showed failure to thrive with muscle wasting. After a couple days on IV fluids she was feeling and looking great. Aside from the constant IV pokes she was enjoying her hospital stay. This was probably the best she felt in awhile with her constant glucose infusion.
On January 6th she was scheduled for surgery. We anxiously awaited her time in her hospital room. Thankfully Child Life was there to help Audrey as well as us. Finally off to surgery we went. Since we knew anesthesia would be difficult we planned to do everything she could need. She was scheduled for her muscle biopsy to confirm her diagnosis of mitochondrial disease, tubes for her ears and her g-tube. The anesthesiologist told us all the precautions and things they would change due to her diagnosis. Surgery was quick, about an hour and 20 minutes. Both of the doctors came out to tells us things went great and the recovery room would come and get us as soon as she started to wake up. My husband and I sat in the little room waiting and watching other families come and go. We waited and waited...after an hour we were getting nervous. Finally after an hour and a half the bring us back. There is our sweet girl arching off the bed screaming with a hoarse voice. I quickly pick her up and she goes limp and starts desaturating. They have us hold cool mist oxygen in front of her. The doctor tells us she has had some trouble waking up. She required and oral airway for an hour and then her blood pressure was very low so they had to give her some extra volume. They will not give any pain medicine until she wakes up more. So we sit and hold her. The hours pass and my husband has to leave to pick up her brother from school. Finally 4 hours after surgery, shes not quite awake but they decide she can go back to her room. Once we get up there she wakes up and now we have to fight to get her pain under control. She getting very small doses as everyone is afraid of how sleepy she may get. Finally after 6 doses of morphine she is able to get some rest.
The remainder of her hospital stay went very smoothly. She was able to tolerate the feedings however due to her pre op testing showing very delayed gastric emptying the decision was made to keep her on continuous feedings for awhile. Finally all of our ducks were lined up and she came home on January 10th. Now she walks around with her little back pack providing continuous feedings. She is still able to eat by mouth, however, she rarely takes more than a few bites.
On January 11th we finally were able to meet with her geneticist. This was a much anticipated appointment as he has a 2 year waiting list. The doctor spent a lot of time with us going over our whole family and each symptom Audrey experienced. He also confirmed her diagnosis. Though we knew this to be the case, a small part of us still hoped he would say, "No way she has this awful disease. There has been a big mistake." He stated he thought she's having "mini stroke-like' episodes which are what is causing her arm to go limp and the right sided weakness. He said she has a more severe form of dysautonomia which is causing her desaturations. Her nerves just don't seem to know when she needs more oxygen and when she doesn't. Aside from that, he could only say we hope that her disease regresses or is at least stabilized since she is one treatment. She will probably continue to experience more and more GI problems. He also said she will pass this on to any children she might have. I couldn't even respond to this as it is so far away I can't spear any brain cells to consider what this could mean for her future.
And now finally we have a day off. We have a few days to get used to our new reality of a g-tube and continuous feeding and oxygen and all the meds. Our house is beginning to look like a hospital with oxygen tanks, pulse oximeter, IV pole, feeding pump, cases of formula, and boxes of supplies. If this keeps her home with us and allows her to continue to grow and develop then we can live with this. If this lets her be a "normal" happy two year old full of life then this is our reality. This is what we hope for and think of. We try not to think about how much has changed in the last 6 months. We try not to think about how much progression she has experienced in such a short time and all the symptoms that are constantly popping up. Maybe her doctor is right and now that she is being treated things will get better. This is the beginning of the new year and we can only hope that it will be better then how it started!
Friday, December 9, 2011
Once again it's been a long time since I wrote. Audrey's just had another bad day with more setbacks as I see them. In one day her feeding therapist said her swallows are becomming more delayed, her speech therapist thinks she has apraxia, her physical therapist thinks her right arm is less coordinated and she was so tired she couldn't even see her occupational therapist.
We are doing another EEG to rule out seizures and pending the visit with neurology to figure out what is going on with her now. On top of everything else the constipation is becoming a huge issue and she's required more and more medications just be able to go to the bathroom. We are all just worried about where this is all heading. In the meantime we're trying to be happy and look forward to Christmas time and remember to be thankful for that good days that we have when she's able to enjoy everything as our happy little two-year-old.
We are doing another EEG to rule out seizures and pending the visit with neurology to figure out what is going on with her now. On top of everything else the constipation is becoming a huge issue and she's required more and more medications just be able to go to the bathroom. We are all just worried about where this is all heading. In the meantime we're trying to be happy and look forward to Christmas time and remember to be thankful for that good days that we have when she's able to enjoy everything as our happy little two-year-old.
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