So Carter was in the hospital for 18 days, including surgery recovery. Holy cow!! For those that didn't know, after Carter had his tonsils and adenoids taken out he came home for the weekend and cried constantly. We tried Tylenol and Loritab and nothing seemed to help him. He literally cried day and night when he was awake. Nothing comforted or helped him. By Monday morning we were both so exhausted and frustrated, we took him into the ER to see what we could figure out. The ENT docs came and looked at his throat, and said it looked like it was healing fine and he shouldn't still be having that much pain from it. They tried a dose or two of morphine and it helped him calm down a little that he could nap. They ended up admitting us after an xray showed that he was very constipated. They started a bowel clean out that Monday evening, along with enemas and suppositories. By Tuesday afternoon he was pretty much cleaned out, which another xray showed. Still Carter was crying and very fussy, which is super unlike him.
Over the next week or so, the doctors tried various tests to see what was going on with him. They did an ultrasound of his stomach to see if things were twisted inside out, a scan of his brain, they tested him for kidney stones, they tried morphine and Tylenol for pain, they tried Ativan for anxiety, etc etc. Wednesday he was pretty bad and cried a lot, so by Thursday I took the day off from the hospital and let parents take their turns. Most of the nights there at the hospital, they either had to wheel him in a wagon all night long to get him to sleep, or he woke up multiple times crying. I was discouraged to hear and see he wasn't getting much better. Everyday showed little improvements, but he was still not like my Carter. My Carter generally slept through the night, napped here and there, was very happy and chill and relaxed. We could go to the stores, pretty much anywhere and he was pretty good. We did have the occasional mishap with church and such, but when he cried it was always manageable and contained within 30-40 min. He never cried just to cry, on and on for no apparent reason.
By Sunday I was pretty frustrated, depressed, and devastated to see my little boy changing so much and I had no idea why. The doctors had no medical reason to explain this change in him. We saw so many different specialists I can't even remember. I even emailed a doctor in Cincinnati that has dealt with numerous 1p36 patients to see what he thought, and he made some suggestions. I did research online, I asked my 1p36 family on Facebook for ideas, I prayed, I cried, he received blessings, his name went on the prayer roll multiple times....on Sunday they started him on a low dose of Neurontin. It is a medicine that is supposed to help calm nerves down and make them able to deal with their environment and surroundings more easily. It takes 5 days to even see if the dose is working, which was frustrating to hear. The doctors started to mention discharge almost everyday to get us ready to go home. I was not ready yet. Over the 2-3 weeks since his surgery and this change in him, I had entered a dark place. I was experiencing depression all over again, similar to post partum. I was no longer confident in my abilities as a parent, I was scared of Carter and of being around him, scared of his crying/fussing. I was not sleeping well, I was stressed and not doing well.
On Wednesday they discharged us, because they had no medical reason to keep him there. We met with Dr. Nancy Murphy that morning before we left and took a tour of the South Davis Community Hospital. We now had two options- go home, or have Carter enter this hospital until he was completely better. After taking the tour, I felt even more depressed and felt impressed that he should come home and see what happened. I was so nervous to bring him home, I literally was shaking and crying a lot of the time. It might sound dramatic, and I'm sure being pregnant had a part in my emotions, but I was terrified. It was like bringing a newborn baby home, feeling like we were starting all over again. Not knowing what to expect. I have had my Carter for 2 years and he was never like this. It was scary. My mom came over the first two nights he was home to help me get him in bed. Each night he cried to go to sleep, but it got less with each day. He seemed scared of his crib which was weird.
He has been home 6 days now, and things have improved but are still not back to "normal". I feel like I've had to re-introduce him to our apartment and his home. I've had to re-teach him to go to sleep in his crib, to self soothe, to try and get back on schedule, to take naps again, to go places and run errands, be around people etc. Everything has been kind of like trial and error since bringing him home. I was scared the first time I vacuumed, the first time I used the blender, the first time I laid him down for a nap, the first time we went to the store,etc. Might sound silly, but I was literally walking on eggshells. I keep saying knock on wood, but he is sleeping better at night. He will go down about 7:30-8 and will fuss for a bit, then falls asleep on his own. I now use a nightlight to help him feel more comfortable. He will wake up once or twice to cry but self soothes himself. I don't go in at all. He is waking up more happy, whereas the first few mornings he seemed grumpy and disoriented. I am still working with him on naps- he still resists them and won't do it for very long. Then he is tired all day and rubbing his eyes. By 4 pm he is pretty grumpy the rest of the evening, which is hard. He needs more entertainment, scenery changes, attention and coddling. While I know that things are much improved, I want my old Carter back.
We increased his Neurontin last Friday and may do so again if we continue to see it helps. The other thing I've always wondered in the back of my mind, is that this ketogenic diet he started in November affected him. We don't really see seizures anymore which is fabulous, but maybe because of that new awareness he is getting sensory overload and isn't able to handle his environment as well anymore. He is more sensitive and touchy- if things don't get better we may consider taking him off the diet. That would be a last option though, because he has made more improvements. He is more aware, he looks at people more and tracks them, he smiles and laughs a lot. These are all great, but then you have the increased fussiness in the evening and the no naps and the occasional rough night. The doctors seem to think he is experiencing some kind of neuro stress, which really is not a great explanation because who knows how the brain works?
I am trying really hard to remain positive, focused and patient. I am trying to put myself in Carter's shoes and to really comfort and be there for him. It has been hard because I am emotionally drained, still depressed and scared, and big pregnant. I feel like I haven't taken good care of myself, I don't eat or drink enough and I haven't gained any weight with this pregnancy. I am 26 weeks and still 5 lbs less than when I began. I find that I am always anxious, not sleeping well, and very antsy. I hope with time this will get much better. If it weren't for my husband, I am sure I would have thrown in the towel by now. He has been amazing. My family has also been very supportive. It's hard for me to have a special needs child that I can't talk or reason with, and now feeling like he has a completely different personality--I feel pretty overwhelmed. Take it one day at a time right? Please keep praying for Carter's continued rest and well being, and my emotions to even out again. I want to feel happy and hopeful again, but it feels far off still. I don't think anyone can really understand unless they've been through it too. I will try to keep the blog updated, and hopefully the next post or two will be much more positive.
Tuesday, January 24, 2012
Thursday, January 5, 2012
Tonsillectomy from Hell
So I have been needing to vent about this surgery for quite some time, but gave it a few more days to see how things progressed. Carter had a tonsillectomy and also had his adenoids removed last Thursday- a week ago. He has been in the hospital ever since- yes, a week. We decided to go forward with this surgery because we heard it helped other 1p36 kids with sleep and not needing oxygen anymore. This was our big hope, because at home Carter will rip out his oxygen and just freak out. I finally got to the point where I said no more, it's not worth it. He isn't on very much, so we stopped putting it on him at night because the fight just wasn't worth it. So we decided since we weren't putting the oxygen on him, that we better do something. The ENT doctor made it sound like surgery was the only other option. We picked a day that worked for us, especially since Chris was home from work for a bit and could be there to help. We knew Carter would have to stay one night, but 7 so far??
Carter has had anaesthesia a few times before, and usually woke up fine within a few hours and a little cranky but not bad. Well, I guess as soon as he started coming to following the surgery, he kept crying, holding his breath and was turning completely blue. He does these breath holding spells at home occasionally, but it sounded pretty bad. The nurses were all pretty scared so they sent him to the PICU for further care and observation. Usually the parent can go see the child pretty soon after surgery in the recovery room and then follows them to their assigned room. Well, we weren't able to see him for an hour or so and then it was in the PICU. They are able to give a higher flow of oxygen there, as well as more personal care. He looked pretty beat up when we saw him, his lips were swollen and bloody in the corners. So what has happened since? Well, Carter was in the PICU, with one night on a bi-pat machine, until Monday morning when they transferred him upstairs onto the floor. After 2 days there, they worried about his work of breathing and tiring out, so they sent him back to the PICU for another night. Today he was sent back up to the third floor, but nothing is really progressing.
Carter has pretty much been asleep 24/7 since the surgery- he will wake up time to time but not very long. His work of breathing looks better not as fast, but he still seems to need some oxygen to keep his stats up. My frustrations have mounted over this week because no one has any idea what is wrong, why he is taking so long to recover, why he is so sleepy, and on and on. I have liked being in the PICU because the nurses are really there the entire time, their patient load is usually just 1 or 2 patients, and they seem to position him better, suction him when needed, and overall take great care of him. On the floor, the nurses only come in if he needs to be fed, changed or medications. I have been frustrated because we are constantly asked the same questions over and over; Carter has been the same for days and isn't progressing or necessarily getting worse, and we are just plain sick and tired of being at the hospital. Fortunately, we do go home at night to sleep, but being pregnant is always a laughing game when it comes to sleep anyway. I am going crazy being there 12 hours a day. We have taken some breaks here and there, but I don't even feel like going up anymore unless he is coming home. I'm not helping any, the nurses are there to take care of him.
His x rays have showed some fluid, which at first they thought was pneumonia. Now they think it's post obstructive edema, meaning his lungs reacted to the surgery by filling up with fluid. They have given him stuff to help flush that fluid out, but unfortunately, since the surgery was in his throat, he can't handle the new secretions that are there. They have to suction him to help him clear his airway. This really makes him mad, as I'm sure it would anyone. It's just been really hard to see Carter suffer, when we thought this would be something helpful to him. We thought it would help him sleep better, not need oxygen, and overall have more room in his airway. But if anything, everything looks so much worse. The swelling should be down by now, it has been a week. I just don't get what is going on. I want to come home, even if we have to do oxygen at home, but the nurses seem to being careful. It's just a long waiting game, and is starting to remind me of his time in the NICU as a newborn. Super stressful and frustrating. I feel like as a parent we should have some say in his care, which we do have some, but it seems like nothing is happening. Even if we came home with oxygen I know Carter is just going to rip it out constantly. Tonight up on the floor he seemed to be waking up more, and was back to his crying spells, freaking out and not wanting to be touched. It's so frustrating to not be able to help your child or touch them.
I just feel like we made a horrible decision by doing this....I don't know if it will pay off one day, but I am sure super frustrated. I have lost my patience with all the different nurses and all their questions, which are the same day in day out. I am tired of eating cafeteria food, of driving up there everyday, of not seeing the sunlight.....I could go on and on. (my parents did take over for me last evening so I could go home and get things done, and we've run some errands but I hate feeling trapped.) I know there are worse things out there, much worse, but I sure don't feel positive at all right now. We have been up at the hospital the last 3 months in a row for almost a week each time, each month. So you can see why I'm starting to hate this place. It's just funny how doctors don't really ever have the answers, especially when it comes to a complicated kid like Carter. People tell me to be positive, but they have no idea what it's like. All these things we have been doing have been to help Carter and his quality of life-- but sometimes it feels like it really sucks everything out of me. I had to vent, I hope it makes me feel better after, just a little. Hopefully we can come home soon, and without any oxygen. And I also hope Carter's mysterious crying fits/blue spells and not wanting to be held go away. We need answers.
Carter has had anaesthesia a few times before, and usually woke up fine within a few hours and a little cranky but not bad. Well, I guess as soon as he started coming to following the surgery, he kept crying, holding his breath and was turning completely blue. He does these breath holding spells at home occasionally, but it sounded pretty bad. The nurses were all pretty scared so they sent him to the PICU for further care and observation. Usually the parent can go see the child pretty soon after surgery in the recovery room and then follows them to their assigned room. Well, we weren't able to see him for an hour or so and then it was in the PICU. They are able to give a higher flow of oxygen there, as well as more personal care. He looked pretty beat up when we saw him, his lips were swollen and bloody in the corners. So what has happened since? Well, Carter was in the PICU, with one night on a bi-pat machine, until Monday morning when they transferred him upstairs onto the floor. After 2 days there, they worried about his work of breathing and tiring out, so they sent him back to the PICU for another night. Today he was sent back up to the third floor, but nothing is really progressing.
Carter has pretty much been asleep 24/7 since the surgery- he will wake up time to time but not very long. His work of breathing looks better not as fast, but he still seems to need some oxygen to keep his stats up. My frustrations have mounted over this week because no one has any idea what is wrong, why he is taking so long to recover, why he is so sleepy, and on and on. I have liked being in the PICU because the nurses are really there the entire time, their patient load is usually just 1 or 2 patients, and they seem to position him better, suction him when needed, and overall take great care of him. On the floor, the nurses only come in if he needs to be fed, changed or medications. I have been frustrated because we are constantly asked the same questions over and over; Carter has been the same for days and isn't progressing or necessarily getting worse, and we are just plain sick and tired of being at the hospital. Fortunately, we do go home at night to sleep, but being pregnant is always a laughing game when it comes to sleep anyway. I am going crazy being there 12 hours a day. We have taken some breaks here and there, but I don't even feel like going up anymore unless he is coming home. I'm not helping any, the nurses are there to take care of him.
His x rays have showed some fluid, which at first they thought was pneumonia. Now they think it's post obstructive edema, meaning his lungs reacted to the surgery by filling up with fluid. They have given him stuff to help flush that fluid out, but unfortunately, since the surgery was in his throat, he can't handle the new secretions that are there. They have to suction him to help him clear his airway. This really makes him mad, as I'm sure it would anyone. It's just been really hard to see Carter suffer, when we thought this would be something helpful to him. We thought it would help him sleep better, not need oxygen, and overall have more room in his airway. But if anything, everything looks so much worse. The swelling should be down by now, it has been a week. I just don't get what is going on. I want to come home, even if we have to do oxygen at home, but the nurses seem to being careful. It's just a long waiting game, and is starting to remind me of his time in the NICU as a newborn. Super stressful and frustrating. I feel like as a parent we should have some say in his care, which we do have some, but it seems like nothing is happening. Even if we came home with oxygen I know Carter is just going to rip it out constantly. Tonight up on the floor he seemed to be waking up more, and was back to his crying spells, freaking out and not wanting to be touched. It's so frustrating to not be able to help your child or touch them.
I just feel like we made a horrible decision by doing this....I don't know if it will pay off one day, but I am sure super frustrated. I have lost my patience with all the different nurses and all their questions, which are the same day in day out. I am tired of eating cafeteria food, of driving up there everyday, of not seeing the sunlight.....I could go on and on. (my parents did take over for me last evening so I could go home and get things done, and we've run some errands but I hate feeling trapped.) I know there are worse things out there, much worse, but I sure don't feel positive at all right now. We have been up at the hospital the last 3 months in a row for almost a week each time, each month. So you can see why I'm starting to hate this place. It's just funny how doctors don't really ever have the answers, especially when it comes to a complicated kid like Carter. People tell me to be positive, but they have no idea what it's like. All these things we have been doing have been to help Carter and his quality of life-- but sometimes it feels like it really sucks everything out of me. I had to vent, I hope it makes me feel better after, just a little. Hopefully we can come home soon, and without any oxygen. And I also hope Carter's mysterious crying fits/blue spells and not wanting to be held go away. We need answers.
Wednesday, December 28, 2011
Holidays
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| Christmas Day 2011 |
Christmas Day we had brunch at my parents which is a tradition my grandmother started, with delicious food. This was after we opened our own presents at home. Later that day, we went to visit Chris's family. We were blessed with a lot of great gifts; Carter got a lot of cute clothes and some toys and books.
Here's to hoping for a good year, full of health and hopefully some developments on Carter's part. I'm hoping for less appointments and hospital stays, and we are excited to welcome Sierra into our home at the end of April. MERRY CHRISTMAS everyone! And a Happy New Year!!
Saturday, December 17, 2011
Feeling like a Shut-In
I have read a post that covered this topic on a friend's blog- the family also has a disabled child and has struggled with feeling like a shut-in. I didn't think too much on the topic until I started feeling that way myself. Carter can be extremely difficult to take places sometimes, depending on the time of day or even just his mood. He seems to be more sensitive and difficult lately, and it's hard to predict when things will go well. We've frequently left church I don't even know how many times, because Carter freaks out and cries and won't calm down. The only solution seems to be to leave, and he is calm once in the car or home. Last Sunday we tried leaving him in his stroller, and we actually made it through all 3 hours of church. I think it was successful because he liked being able to look around and not be held or touched. I hope this solution can help us as we move forward, and eventually I hope a wheelchair will be even better.
After almost giving up on even trying to go to church, we started having problems with other things. We've had to leave family dinners early because Carter gets upset at something and won't calm down. Again, just putting him in the car and driving makes him super happy. I can't just drive around all day all the time, so obviously not a solution. Then it's happened where he is sick or in the hospital, and we have missed family events and/or parties. We have also missed a birthday party because Carter just could not calm down. I tend to lose my cool pretty quickly in situations like this; maybe because I'm pregnant and not feeling well anyway, but also because I don't feel like Carter is growing up or that he is behaving more like a toddler or child. I feel more than ever he is a baby, because all he can do is cry to communicate his distress. I wish I could reason with him by talking or even signing, but we are still reduced to panicking in a public setting while trying to solve our child's issues while he continues to scream and cry ever louder. I've mentioned this before in other posts, but touching or holding him just aggravates the situation. A car ride, or sometimes even medicine is the only real solution.
I've become more and more frustrated as the events have piled up that we have been missing out on. Not that they were all super great or exciting anyway, but it really sucks to feel left out. I feel as far away from normal as possible some days. I struggle with feeling "normal" or accepted even when Carter is behaving well. Now that his unpredictable behaviors have us running for the car often, I don't even feel like trying anymore. I know that if he is napping, absolutely nothing is worth waking him up for. I know certain times of the day to avoid, but it isn't always predictable. Because of my hubby's work schedule, I am often alone with Carter when I wish I could get out and go places and do things, but I know it's not even worth trying. Being pregnant makes it really difficult to carry him around, get him in and out of the car, etc. So these activities will eventually have to become limited on their own. I'm sure it's a combination of the dreary weather, the dark, my pregnancy, and Carter-- but I sure feel like a loner or hermit a lot of the time. I often find myself feeling very unfortunate in my lot in life, and trials. I find it hard to find the motivation to keep going each day.
After almost giving up on even trying to go to church, we started having problems with other things. We've had to leave family dinners early because Carter gets upset at something and won't calm down. Again, just putting him in the car and driving makes him super happy. I can't just drive around all day all the time, so obviously not a solution. Then it's happened where he is sick or in the hospital, and we have missed family events and/or parties. We have also missed a birthday party because Carter just could not calm down. I tend to lose my cool pretty quickly in situations like this; maybe because I'm pregnant and not feeling well anyway, but also because I don't feel like Carter is growing up or that he is behaving more like a toddler or child. I feel more than ever he is a baby, because all he can do is cry to communicate his distress. I wish I could reason with him by talking or even signing, but we are still reduced to panicking in a public setting while trying to solve our child's issues while he continues to scream and cry ever louder. I've mentioned this before in other posts, but touching or holding him just aggravates the situation. A car ride, or sometimes even medicine is the only real solution.
I've become more and more frustrated as the events have piled up that we have been missing out on. Not that they were all super great or exciting anyway, but it really sucks to feel left out. I feel as far away from normal as possible some days. I struggle with feeling "normal" or accepted even when Carter is behaving well. Now that his unpredictable behaviors have us running for the car often, I don't even feel like trying anymore. I know that if he is napping, absolutely nothing is worth waking him up for. I know certain times of the day to avoid, but it isn't always predictable. Because of my hubby's work schedule, I am often alone with Carter when I wish I could get out and go places and do things, but I know it's not even worth trying. Being pregnant makes it really difficult to carry him around, get him in and out of the car, etc. So these activities will eventually have to become limited on their own. I'm sure it's a combination of the dreary weather, the dark, my pregnancy, and Carter-- but I sure feel like a loner or hermit a lot of the time. I often find myself feeling very unfortunate in my lot in life, and trials. I find it hard to find the motivation to keep going each day.
Monday, December 12, 2011
Carter Turns 2!
Us with our sweet birthday boy
Stats: 26 lbs 12 oz and 24.5 inches long. He is 50% in height and 20% in weight. He has come down a little bit but he is proportionate, and a little easier to carry.
Wednesday, December 7, 2011
Sleep Study & Inspirational Stories
We finally have more results from Carter's sleep study from a month ago. I followed up with ENT today and they told me a few things. They rate the studies on a scale; 5 is usually severe for a child, 20 for an adult. Carter is a 23- I think this means for every hour he averages 23 episodes of sleep apnea or some form of obstructive breathing. That is why the sleep specialist suggested putting him on oxygen whenever he is asleep. There was also a point in the study when his oxygen dropped to 47- what?! They usually want the oxygen stats at 90-100, 47 is very very low. We have not been successful with keeping his oxygen on him, the strong little monkey. So the doctor said our option is to remove his tonsils and adenoids. Another surgery I say?? First of all, I am upset that it took over a month to get any kind of results. AND the results were told to us by two different people, not the sleep specialists. So now the sleep doctor is out of the country for another two weeks, in which time we will decide if the surgery is worth it. I am doing research and checking with other 1p36 families to see if it helped their child. Carter's tonsils are not overly large, so I'm worried it won't help much. Just one more thing to have to deal with, this poor guy.
I've run across some beautiful stories/poems on the 1p36 group on Facebook. They are not mine, but I wanted to share them:
Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes... in a giant ledger.
"Armstrong, Beth; son; patron saint, Matthew.
"Forrest, Marjorie; daughter; patron saint, Cecelia.
"Rudledge, Carrie; twins; patron saint.... give her Gerard. He's used to profanity.
" Finally, he passes a name to an angel and smiles, "Give her a handicapped child."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a handicapped child a mother who does not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it." "I watched her today. She has that feeling of self and independence. She'll have to teach the child to live in her world and that's not going to be easy."
"But, Lord, I don't think she even believes in you."
God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness." The angel gasps,
"Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, there is a woman I will bless with a child less then perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says
"Momma" for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations." "I will permit her to see clearly the things I see---ignorance, cruelty, prejudice--- and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."
"And what about her patron saint?" asks the angel, his pen poised in midair.
God smiles. "A mirror will suffice."
I Am The Child
I am the child who cannot talk. You often pity me, I see it in your eyes. You wonder how much I am aware of — I see that as well. I am aware of much — whether you are happy or sad or fearful, patient or impatient, full of love and desire, or if you are just doing your duty by me. I marvel at your frustration, knowing mine to be far greater, for I cannot express myself or my needs as... you do.
You cannot conceive my isolation, so complete it is at times. I do not gift you with clever conversation, cute remarks to be laughed over and repeated. I do not give you answers to your everyday questions, responses over my well-being, sharing my needs, or comments about the world about me. I do not give you rewards as defined by the world’s standards — great strides in development that you can credit yourself; I do not give you understanding as you know it.
What I give you is so much more valuable — I give you instead opportunities. Opportunities to discover the depth of your character, not mine; the depth of your love, your commitment, your patience, your abilities; the opportunity to explore your spirit more deeply than you imagined possible. I drive you further than you would ever go on your own, working harder, seeking answers to your many questions with no answers. I am the child who cannot talk.
I am the child who cannot walk. The world seems to pass me by. You see the longing in my eyes to get out of this chair, to run and play like other children. There is much you take for granted. I want the toys on the shelf, I need to go to the bathroom, oh I’ve dropped my fork again. I am dependant on you in these ways. My gift to you is to make you more aware of your great fortune, your healthy back and legs, your ability to do for yourself. Sometimes people appear not to notice me; I always notice them. I feel not so much envy as desire, desire to stand upright, to put one foot in front of the other, to be independent. I give you awareness. I am the child who cannot walk.
I am the child who is mentally impaired. I don’t learn easily, if you judge me by the world’s measuring stick, what I do know is infinite joy in simple things. I am not burdened as you are with the strifes and conflicts of a more complicated life. My gift to you is to grant you the freedom to enjoy things as a child, to teach you how much your arms around me mean, to give you love. I give you the gift of simplicity. I am the child who is mentally impaired.
I am the disabled child. I am your teacher. If you allow me, I will teach you what is really important in life. I will give you and teach you unconditional love. I gift you with my innocent trust, my dependency upon you. I teach you about how precious this life is and about not taking things for granted. I teach you about forgetting your own needs and desires and dreams. I teach you giving. Most of all I teach you hope and faith. I am the disabled child.
I've run across some beautiful stories/poems on the 1p36 group on Facebook. They are not mine, but I wanted to share them:
Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes... in a giant ledger.
"Armstrong, Beth; son; patron saint, Matthew.
"Forrest, Marjorie; daughter; patron saint, Cecelia.
"Rudledge, Carrie; twins; patron saint.... give her Gerard. He's used to profanity.
" Finally, he passes a name to an angel and smiles, "Give her a handicapped child."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a handicapped child a mother who does not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it." "I watched her today. She has that feeling of self and independence. She'll have to teach the child to live in her world and that's not going to be easy."
"But, Lord, I don't think she even believes in you."
God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness." The angel gasps,
"Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, there is a woman I will bless with a child less then perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says
"Momma" for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations." "I will permit her to see clearly the things I see---ignorance, cruelty, prejudice--- and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."
"And what about her patron saint?" asks the angel, his pen poised in midair.
God smiles. "A mirror will suffice."
I Am The Child
I am the child who cannot talk. You often pity me, I see it in your eyes. You wonder how much I am aware of — I see that as well. I am aware of much — whether you are happy or sad or fearful, patient or impatient, full of love and desire, or if you are just doing your duty by me. I marvel at your frustration, knowing mine to be far greater, for I cannot express myself or my needs as... you do.
You cannot conceive my isolation, so complete it is at times. I do not gift you with clever conversation, cute remarks to be laughed over and repeated. I do not give you answers to your everyday questions, responses over my well-being, sharing my needs, or comments about the world about me. I do not give you rewards as defined by the world’s standards — great strides in development that you can credit yourself; I do not give you understanding as you know it.
What I give you is so much more valuable — I give you instead opportunities. Opportunities to discover the depth of your character, not mine; the depth of your love, your commitment, your patience, your abilities; the opportunity to explore your spirit more deeply than you imagined possible. I drive you further than you would ever go on your own, working harder, seeking answers to your many questions with no answers. I am the child who cannot talk.
I am the child who cannot walk. The world seems to pass me by. You see the longing in my eyes to get out of this chair, to run and play like other children. There is much you take for granted. I want the toys on the shelf, I need to go to the bathroom, oh I’ve dropped my fork again. I am dependant on you in these ways. My gift to you is to make you more aware of your great fortune, your healthy back and legs, your ability to do for yourself. Sometimes people appear not to notice me; I always notice them. I feel not so much envy as desire, desire to stand upright, to put one foot in front of the other, to be independent. I give you awareness. I am the child who cannot walk.
I am the child who is mentally impaired. I don’t learn easily, if you judge me by the world’s measuring stick, what I do know is infinite joy in simple things. I am not burdened as you are with the strifes and conflicts of a more complicated life. My gift to you is to grant you the freedom to enjoy things as a child, to teach you how much your arms around me mean, to give you love. I give you the gift of simplicity. I am the child who is mentally impaired.
I am the disabled child. I am your teacher. If you allow me, I will teach you what is really important in life. I will give you and teach you unconditional love. I gift you with my innocent trust, my dependency upon you. I teach you about how precious this life is and about not taking things for granted. I teach you about forgetting your own needs and desires and dreams. I teach you giving. Most of all I teach you hope and faith. I am the disabled child.
Sunday, December 4, 2011
Ketogenic Diet & Hospital Stay
Carter was in the hospital this week to start the Ketogenic diet. For those not familiar with this, I have blogged about it several times before. It is a diet low in carbs, little if no sugar, normal protein and high fat (similar to Atkins). The diet is used to control seizures in children and kids when medication is not enough. The diet requires your child stay in the hospital 2-5 days to be monitored and make sure their body is making the switch well. Unfortunately before arriving there, Carter had started to develop a cold that I think he got from me. Our stay ended up being the 5 days because his cold started to interfere with his well being and the nurses had to suction him every few hours day and night. When Carter gets sick, it gets pretty serious fast. All that thick mucus is hard for him to handle and with his low muscle tone he can't cough it up well enough, or blow his nose to get it out like adults can. The poor guy had to endure not only a new diet, vitals every 4 hours, ketone levels checked every 4 hours (details later), had to be poked in a finger every 4 hours for his blood sugar level, but he also had to be suctioned out quite often. This makes him very angry.
By the third day his blood sugar levels were close to borderline low, so the dietitian and nurse practitioner lowered the ratio of his formula. With the diet, for every three or four calories of fat, there is one gram of protein/carbohydrate. So the ratio is 3:1- they had to change it down a little to 2.75:1 which means there is a little more carb in the diet. He seemed to tolerate that better and his blood sugar levels came back up. We are still feeding him four times a day and spreading out the formula and water so he gets an equal amount each time. We are no longer doing a continuous night feed which has its perks in ways. The reason they test the blood sugar level so often in the hospital is because they want the child to be stable before sending them home, because I won't be testing him for that. I just have to look for any warning signs of hypoglycemia and report it if it happens.
So the ketone strips are what I am doing at home 2-4 times a day the first month. Basically I put a couple cotton balls in his diaper and wait until he soaks them up with urine, and then place them in a syringe and use the plunger to squeeze it out. Then I dip a ketone strip in the urine and wait for the colors to show up. It is kind of similar to the test strip the doctors have pregnant women do at their appointments. We want the strip to be purple which shows there are ketones present. So the ketogenic diet makes the child use fat instead of carbs for energy. Since there is a lot of fat in the diet, the body uses that for energy, and the fat changes into ketones, which then feed the body's cells. The high amount of ketones in the body can help stop seizures in children.
So basically the main differences this diet represents to us as parents is the following:
-we prepare his formula ourselves once a day. We have a specific formula from the dietitian and we mix the proper amount of water with the Ketocal formula, and the Benoprotein formula. Everything is exact and measured out on a scale or a cylinder. Once prepared, the formula is good for 24 hours. It can sit out for 4 hours maximum in room temperature.
-we text his urine for ketones 2-4 times a day
-he now takes vitamins and supplements once a day (5 of them besides his normal prescriptions)
-we weigh him once a week and report to the dietitian his weekly weight, ketones and seizures activity
-lastly, he now is on oxygen at night
By the third day his blood sugar levels were close to borderline low, so the dietitian and nurse practitioner lowered the ratio of his formula. With the diet, for every three or four calories of fat, there is one gram of protein/carbohydrate. So the ratio is 3:1- they had to change it down a little to 2.75:1 which means there is a little more carb in the diet. He seemed to tolerate that better and his blood sugar levels came back up. We are still feeding him four times a day and spreading out the formula and water so he gets an equal amount each time. We are no longer doing a continuous night feed which has its perks in ways. The reason they test the blood sugar level so often in the hospital is because they want the child to be stable before sending them home, because I won't be testing him for that. I just have to look for any warning signs of hypoglycemia and report it if it happens.
So the ketone strips are what I am doing at home 2-4 times a day the first month. Basically I put a couple cotton balls in his diaper and wait until he soaks them up with urine, and then place them in a syringe and use the plunger to squeeze it out. Then I dip a ketone strip in the urine and wait for the colors to show up. It is kind of similar to the test strip the doctors have pregnant women do at their appointments. We want the strip to be purple which shows there are ketones present. So the ketogenic diet makes the child use fat instead of carbs for energy. Since there is a lot of fat in the diet, the body uses that for energy, and the fat changes into ketones, which then feed the body's cells. The high amount of ketones in the body can help stop seizures in children.
So basically the main differences this diet represents to us as parents is the following:
-we prepare his formula ourselves once a day. We have a specific formula from the dietitian and we mix the proper amount of water with the Ketocal formula, and the Benoprotein formula. Everything is exact and measured out on a scale or a cylinder. Once prepared, the formula is good for 24 hours. It can sit out for 4 hours maximum in room temperature.
-we text his urine for ketones 2-4 times a day
-he now takes vitamins and supplements once a day (5 of them besides his normal prescriptions)
-we weigh him once a week and report to the dietitian his weekly weight, ketones and seizures activity
-lastly, he now is on oxygen at night
The reason he is on oxygen now is because we finally got someone to look up Carter's sleep study results. After calling several times and getting no response I was pretty frustrated. They said he has irregular breathing patterns, not quite sleep apnea, and requires .25 of a liter of oxygen while asleep. I have to admit this was the most challenging change for me, because he constantly rips out his nose canola and he hates it. We try to sneak it on him when he's asleep, but he usually knows and wakes up. We follow up with ENT next week to find out more about his obstructive breathing patterns.
Also some interesting details with the diet: he can't have any liquid medicines unless approve by the dietitian, because they usually contain sugar. If he needs a pain medicine like Tylenol, we are to use an adult tablet and then ask what the child strength would be. Also, any products such as baby wipes, shampoo, wash, chapstick, etc have to be approved and looked over for carbs or sugar. Surprisingly, many things have sugar in them and can affect the effectiveness of the diet. We have an approve list of medications as well as body products that we follow. We had to switch him to Johnson & Johnson shampoo and wash- I was using the WalMart brand and it had sugar in it. So now we have to watch everything he eats, but everything that touches him as well.
Overall, the diet has not been a huge change for us because he has a G Tube and is fed through his stomach. He also seems to be tolerating it well which is great. We have seen very few seizures in the last few days, so we are hoping this bodes well for Carter and us. I do admit with every little change with Carter, I feel a little more isolated from being "normal" and going out and doing normal activities. It also makes having a babysitter harder because we are constantly training our parents. I'm sure as with everything else, with time, it will just be another norm for us.
One last side note- it seems the older Carter gets the weaker his immune system seems to be. Perhaps it is just with winter time; he was just very sick mid October and then got sick again end of November. It worries me because he usually requires oxygen and extensive suctioning. I'm trying to figure out what places or activities we should restrict during these cold months to keep him from getting sick. Also, I'm watching closely for any family members or friends that are sick to not be around him. It might sound excessive, but when a simple cold lands him in the hospital it just isn't worth the risk.
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