Audrey is still in the hospital with no upcoming plans about going home. Yesterday she went down for an upper GI. Many people have these tests, I've had one myself and it is fairly non-invasive. However, my 2 year old is terrified of x-ray. I know this so I asked ahead of time for Child Life to go with us, hoping for better tolerance. She showed up with a basket of distraction tools which made her gurney ride through the hospital lots of fun. However as soon as we got to x-ray the crying and clinging started. The radiologist was very nice and understanding but Audrey doesn't seem to understand "lay still" "keep you legs straight" "no kicking" especially once she gets so worked up. So that took about an hour and then we had a few hours of x-rays in her room which barely went any better.
So, after much miscommunication the fellow finally came in to say she does have delayed gastric emptying, her stomach is shaped funny which may be part of the problem, and she has mild SMA syndrome. Huh? I don't know that one. SMA syndrome or superior mesenteric artery syndrome was described to me as something that happens when you quickly lose weight. the fat pad between the aorta and superior mesenteric artery, which gives blood to your entire gut, is decreased causing compression on the duodenum lead to a bowel obstruction. So the plan was to consult surgery and notify GI to find their recommendations but ultimately she really needs to gain weight. So of course, once the doctor left I hoped onto google. I know it's bad and I always advise my patients to be cautious of what they read but I can't seem to help myself. The first article I read said "this is a very rare but serious and life threatening event with a mortality rate of 1 in 3." What?!?! This seriousness was definitely not relayed to me by the doctor. So I continued my google search and found lots of interesting information, not all of it reassuring, but learned there are varying degrees of seriousness and hers is still mild. That being said it is so important to get her to gain weight to prevent progression.
So here we are on Saturday, and as some people know, nothing happens on the weekend in the hospital. I know my girl has this rare but potentially serious condition on top of her already-difficult-to-treat mitochondrial disease. We can't feed her through the g-tube and they weren't able to do the PICC line so she has an IV in her hand which does not last long. She had 4 IV sticks already and they will continue to add up this weekend. I know eventually they will go to her right hand. They have avoided it so far because she sucks her thumb, but it's bound to happen and she will not be a happy camper. I am obviously still very worried about though maybe I am relieved to find an answer?? At least this new problem has a potential solution where as everything else she has is just hoping and treatment of symptoms. So here's so to at least getting a plan for Monday since nothing will happen on the weekend!
Saturday, April 28, 2012
Thursday, April 26, 2012
Admission #3
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!
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!
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!
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