Mar 29, 2008
A Trach Child's Death
Most everyone knows that I get a ton of support from friends on the tracheostomy.com forum. Parents of children with trachs from all over the world are there day and night to lend support, give advice, listen and "get it" when no one else does. One of the moms just posted that her 3 year old son died in his sleep a week or so ago. He'd had the flu but no one thinks their child will die from the flu. It reminds me to be vigilent about using our oximeter and baby monitor and not letting her out of my sight in case the one time I leave her for a minute is the time she pulls the trach out. It's easy to relax when things are going well. Such is the fear of a parent of a child with a trach. He was scheduled to go in for an airway surgery in April. To come so far and be so close. It breaks my heart.
Mar 25, 2008
One Week Out of the Brace
Today its been a week since Ainsley got out of the brace. Already I see a big difference in the amount she is able to move. She is straightening her legs more and is even pulling them up under herself when she's on her stomach and it doesn't seem to hurt her like it did before. It's very encouraging that she is trying. Sometimes she arches her body and puts her arms and legs up in the air like an airplane. I think she's wanting to move and is starting to experiment with it. Sometimes we find her a few feet away when she's put on the floor but mostly it seems it's just because she's wiggling not that she's able to move with intention yet. She pulls her body forward when she's in the highchair. She's not yet sitting on her own as well as prior to the cast. I think it'll take a little bit of time to regain her balance. The cast and brace used to do a lot of the work for her. We use the brace during naps and at night. She seems to know that when I put the brace on that it means it's time to sleep. Sadly, when she's tired she gets excited when I put it on.
Mar 23, 2008
Moving to REAL food!
Doctors and nutrionists like formula. It's predictable. They calculate exactly how many calories your child needs according to their growth charts and mathematical formulas. There is no question about whether the patient is getting proper nutrition. If only it was that simple. I have several problems with this theory. First and most importantly being that formula is not food. It's convenient, for sure. But I can't help but think it is not good for the body. I can only imagine how I would feel if I switched to an all liquid diet like Slimfast. Sure I'd be getting the right calories, vitamins, protein and carbs. But would I be full of energy and vital health? I doubt it.
I'm also starting to question that Ainsley has to get the "perfect" amount of food. Since having a child with a feeding tube I've often thought wouldn't that be great if I could feed Adrian via tube to make sure he's getting exactly the nutrients and calories that he "should" for his age and height. Sounds silly doesn't it? All kids do not eat exactly the same amount of food. Nor do they have the same body type. Where Adrian is a somewhat picky eater, Evie is a parent's dream eater. I think they'll both be okay and neither will starve.
A huge problem is that when you're tube feeding a child you don't know when they are hungry or how much they want to eat. Perhaps this will resolve itself when Ainsley is able to communicate but until then it's trial and error. The issue is further compounded by the fact that she gets a lot of feeding at night which leaves her less hungry during the day. Until now I have been relying on nutrionist formulas and pumping in the amount they say she needs. But as time goes on I feel more brave and ready to take over the responsibility for Ainsley's "eating" and feed her like I would any other child. With food. And based on her cues about how much and when she wants to "eat".
On 2/21 I started mixing in quantities of rice cereal to thicken the Pediasure. I knew I would eventually be moving her toward real food. But my primary goal was to thicken the food. My hope was that it might help with vomiting and it did. About a week and a half later I noticed the quantities were less as well as the frequency. I had given her foods orally in the past (with limited success that's another story), and through the tube back in December but stopped when she got sick with a virus. So I decided to start the whole process over. I added a baby food one at a time for a few days like you would with a little baby, in addition to the rice. Alternating the foods at each "meal" like you would for any kid. On 3/17 I started including some frozen pureed chicken I'd made. On 3/20 I started making it into a formula for the day instead of one meal at a time. The formula included rice cereal, chicken, 4 vegetables, 2 fruits, essential fatty acids, liquid vitamins thined with Pediasure and blended very well with a stick blender until it was a consistency that would fit through the g-tube. Tody I started replacing the Pediasure with whole milk. I'm thrilled to say that she's tolerating it fine. For a few days she's been crying toward the end of her feeding. We presume because it's more filling than Pediasure and she's letting us know she's "done" sooner. So we've tried to decrease the size of the feedings and give more of them throughout the day. No doubt it will take some time to figure out what works for her.
I feel really good about this change. It feels great to know she's getting real food even if it is from a jar. She seems to have more energy. She's not vomiting as much which has helped decrease swelling in her airway. And since making this change her poop has gone from a disgusting mucousy mess to normal poop. The only down side is that it takes a fair amount more of my time. I'm hoping to eventually move toward making the food from fresh ingredients but for now this is okay. Eventually it would be great to get her off the night time drip and give her all her food during the day like you would for any child. But small steps.
One good thing about tube feeding your child. They eat lots of things they wouldn't necessarily normally eat at this age. So far the list of foods Ainsley's gotten through the tube:
peas
carrots
sweet potatoes
mixed veggies (includes spinich)
green beans
pumpkin pie (pumpkin with spices)
apples
pears
apples with blueberries
prunes
banana
peaches
chicken
refried beans
rice
oatmeal
milk
essential fatty acids (Omega 3, 6 & 9)
vitamins
I'm also starting to question that Ainsley has to get the "perfect" amount of food. Since having a child with a feeding tube I've often thought wouldn't that be great if I could feed Adrian via tube to make sure he's getting exactly the nutrients and calories that he "should" for his age and height. Sounds silly doesn't it? All kids do not eat exactly the same amount of food. Nor do they have the same body type. Where Adrian is a somewhat picky eater, Evie is a parent's dream eater. I think they'll both be okay and neither will starve.
A huge problem is that when you're tube feeding a child you don't know when they are hungry or how much they want to eat. Perhaps this will resolve itself when Ainsley is able to communicate but until then it's trial and error. The issue is further compounded by the fact that she gets a lot of feeding at night which leaves her less hungry during the day. Until now I have been relying on nutrionist formulas and pumping in the amount they say she needs. But as time goes on I feel more brave and ready to take over the responsibility for Ainsley's "eating" and feed her like I would any other child. With food. And based on her cues about how much and when she wants to "eat".
On 2/21 I started mixing in quantities of rice cereal to thicken the Pediasure. I knew I would eventually be moving her toward real food. But my primary goal was to thicken the food. My hope was that it might help with vomiting and it did. About a week and a half later I noticed the quantities were less as well as the frequency. I had given her foods orally in the past (with limited success that's another story), and through the tube back in December but stopped when she got sick with a virus. So I decided to start the whole process over. I added a baby food one at a time for a few days like you would with a little baby, in addition to the rice. Alternating the foods at each "meal" like you would for any kid. On 3/17 I started including some frozen pureed chicken I'd made. On 3/20 I started making it into a formula for the day instead of one meal at a time. The formula included rice cereal, chicken, 4 vegetables, 2 fruits, essential fatty acids, liquid vitamins thined with Pediasure and blended very well with a stick blender until it was a consistency that would fit through the g-tube. Tody I started replacing the Pediasure with whole milk. I'm thrilled to say that she's tolerating it fine. For a few days she's been crying toward the end of her feeding. We presume because it's more filling than Pediasure and she's letting us know she's "done" sooner. So we've tried to decrease the size of the feedings and give more of them throughout the day. No doubt it will take some time to figure out what works for her.
I feel really good about this change. It feels great to know she's getting real food even if it is from a jar. She seems to have more energy. She's not vomiting as much which has helped decrease swelling in her airway. And since making this change her poop has gone from a disgusting mucousy mess to normal poop. The only down side is that it takes a fair amount more of my time. I'm hoping to eventually move toward making the food from fresh ingredients but for now this is okay. Eventually it would be great to get her off the night time drip and give her all her food during the day like you would for any child. But small steps.
One good thing about tube feeding your child. They eat lots of things they wouldn't necessarily normally eat at this age. So far the list of foods Ainsley's gotten through the tube:
peas
carrots
sweet potatoes
mixed veggies (includes spinich)
green beans
pumpkin pie (pumpkin with spices)
apples
pears
apples with blueberries
prunes
banana
peaches
chicken
refried beans
rice
oatmeal
milk
essential fatty acids (Omega 3, 6 & 9)
vitamins
Mar 18, 2008
Ainsley to Wear Brace Only While Sleeping
Today was a very exciting day! Of all Ainsley’s medical conditions surprisingly the most common one, hip dysplasia, has turned out to be close to the top of the list for most inconvenient. As you know in January I sent out an update saying we were so excited because Ainsley was getting out of the spica cast and getting a abduction brace instead. Little did we know it wasn’t as big of an improvement as we’d hoped. Diapering was still a nuisance because you’d have to get her out of the brace. Positioning was still an issue and her movement was very restricted the majority of the day. And clothing, oh I am so tired of seeing her wear the same dresses and baby legs. But at least she could have baths, a trach no-no but I’m all for bending the rules. Well today, she graduated to wearing the brace at night and naps only. Since she sleeps a fair amount it’s a good chunk of the day. But it’s a step in the right direction. We’ll do that for the next 6 months. That’s almost a whole year of dealing with hip issues. Sigh. So the x-ray today showed the hips in better alignment. Since she has small/shallow hips there is a risk of redislocation. They’ll do x-rays every 3 months to check placement. The best news is that after 4 ½ month she is now okayed for normal movement. Previously she’d been restricted to movements she could instigate herself so working on sitting, standing or crawling was not allowed. Her physical therapist is going to be very excited! It’s likely to take a little while for her to regain normal movement in her legs. Especially the one that had the open reduction. We’ve been doing water therapy and it’s helped a lot. She’s now able to move that leg a little and straighten it out more. The left leg is moving pretty much normally.
We have added an educational therapist and speech and language therapist to her team of care providers. She has made good progress with the educator. They’re working on offering choices and problem solving to give her a greater sense of control in her life. She’s had so many interventions in her short life that she’s learned to be rather passive. She is now indicating her preferences when offered choices between toys. She’s also started playing with toys like a ball toy where you reach up to put a ball in the top and push on a lever to release the ball. It looks like a giant gumball machine. The speech therapist has been working on trying to: teach her beginning language sounds like vowels, increase her receptive language vocabulary, general baby communication skills such as pointing and gesturing and also sign language. The therapist does have her wear her PMV (speaking valve) but she’s really not able to vocalize yet. Clearly there is a lot of catching up to do. In general all of it is still more challenging for her than for the average child. But she’s making slow steady progress.
Since recovering from RSV and a cold in February we’ve been encouraged by an increase of air movement through her mouth. I attribute that to a diet change that I started on Feb. 21st. I started thickening her food with rice cereal and baby food. It’s not nutritionist approved but WTH. I’m tired of waiting for the doctors to come up with solutions. So far it seems to be working great. Her weight has not suffered, she seems to have more energy and best of all the throwing up has finally improved and I think that is helping with the airway swelling. The way I see, the average child her age isn’t required to get “perfect” nutrition. So long as she’s growing as well and she’s getting a reasonable balance of foods I think she’ll be okay. And I make sure she gets enough fluids. She’s still on the Prevacid. Although it didn’t solve the problem in the past I will continue with it until after our trip so that there is no question about if it might have helped if we had continued to give it.
We are SO excited about our trip to see the world famous Dr. Cotton. We leave on my 40th birthday, April 6th, which is less than 3 weeks away! Navigating an airport with a baby with a trach was not what I thought I’d be doing on my 40th birthday but there was very little choice about which week. Really I’m okay with it. So we’ll let everyone know how things go if there are any major changes before then, but if not then I’ll update after the trip. Steve is going to be home with the kids and I’ll be traveling with Joanne, so not to worry, I won’t be alone.
Ainsley’s first taste of real freedom. She was having fun trying to look in the giant mirror.
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Riding in the stroller, without the brace! Gotta watch it, her skinny behind almost fell out even though she was strapped in!
sm.JPG)
Finally freedom to move her legs in her car seat. Not that we go anywhere.
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We have added an educational therapist and speech and language therapist to her team of care providers. She has made good progress with the educator. They’re working on offering choices and problem solving to give her a greater sense of control in her life. She’s had so many interventions in her short life that she’s learned to be rather passive. She is now indicating her preferences when offered choices between toys. She’s also started playing with toys like a ball toy where you reach up to put a ball in the top and push on a lever to release the ball. It looks like a giant gumball machine. The speech therapist has been working on trying to: teach her beginning language sounds like vowels, increase her receptive language vocabulary, general baby communication skills such as pointing and gesturing and also sign language. The therapist does have her wear her PMV (speaking valve) but she’s really not able to vocalize yet. Clearly there is a lot of catching up to do. In general all of it is still more challenging for her than for the average child. But she’s making slow steady progress.
Since recovering from RSV and a cold in February we’ve been encouraged by an increase of air movement through her mouth. I attribute that to a diet change that I started on Feb. 21st. I started thickening her food with rice cereal and baby food. It’s not nutritionist approved but WTH. I’m tired of waiting for the doctors to come up with solutions. So far it seems to be working great. Her weight has not suffered, she seems to have more energy and best of all the throwing up has finally improved and I think that is helping with the airway swelling. The way I see, the average child her age isn’t required to get “perfect” nutrition. So long as she’s growing as well and she’s getting a reasonable balance of foods I think she’ll be okay. And I make sure she gets enough fluids. She’s still on the Prevacid. Although it didn’t solve the problem in the past I will continue with it until after our trip so that there is no question about if it might have helped if we had continued to give it.
We are SO excited about our trip to see the world famous Dr. Cotton. We leave on my 40th birthday, April 6th, which is less than 3 weeks away! Navigating an airport with a baby with a trach was not what I thought I’d be doing on my 40th birthday but there was very little choice about which week. Really I’m okay with it. So we’ll let everyone know how things go if there are any major changes before then, but if not then I’ll update after the trip. Steve is going to be home with the kids and I’ll be traveling with Joanne, so not to worry, I won’t be alone.
Ainsley’s first taste of real freedom. She was having fun trying to look in the giant mirror.
sm.JPG)
Riding in the stroller, without the brace! Gotta watch it, her skinny behind almost fell out even though she was strapped in!
sm.JPG)
Finally freedom to move her legs in her car seat. Not that we go anywhere.
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Mar 12, 2008
A Trach Mom's New Love
Several friends have been raving about the new Amazon Fresh grocery delivery service. Since Ainsley has the trach it's just too hard to go out. She needs such frequent suctioning it isn't safe to drive without another adult in the car especially because she vomits too. Since Steve gets home so late, by the time we eat dinner, grocery shopping is really hard....so I tried it and I have to say it's amazing! If you place the order by midnight it'll arrive on your doorstep in these locked totes before 6am! Can you believe that?! The only thing that would make it better is if they sold wine. Then I could really never leave the house. Ha, ha. It's in the trial phase so I really hope it's successful and stays around. It's been really great for getting baby food or diapers for Ainsley.
Feb 25, 2008
Still Swollen
Some of you knew we had a scope scheduled for Ainsley the Monday she was discharged from Children’s for RSV. It was rescheduled for last Friday and we went. Unfortunately the swelling was only ever so slightly better, and cobblestoning was still present on her epiglottis. It was disappointing but not really surprising. So that confirms we will be traveling to Cincinnati 4/6-4/11 to get a second opinion with the world’s best otolaryngologist. Here’s his bio: http://www.cincinnatichildrens.org/svc/find-professional/c/robin-cotton.htm Please pray (or send positive vibes) that she doesn’t get sick and can’t go and that this doctor will have some ideas on how to get that swelling to go away so we can get this trach out.
Feb 12, 2008
That's What I Get For Bragging - RSV
Lately I’ve been bragging about how remarkable it is that Ainsley has been so healthy. Kids with trachs are more likely to get sick and far more likely to end up in the hospital than “regular” kids when they do get sick. Even her doctors were surprised she had never been hospitalized other than for a surgery. So of course I was tempting the gods. Adrian brought home what seemed to be a cold and passed it to Steve, passed it to me, passed it to Ainsley. Only Evie was spared. It seemed fairly mild until Thursday when she developed a fever of 103. It still seemed she was going to be okay. The fever would come down some with Tylenol and she was still oxygenating at 97-98% or so which is still really good even though it’s a little low for her.
Then Friday evening I took her into the bath to give her a chance to move her legs with some support in the water (our newest form of physical therapy). When she was laying on the bath mat I saw that her chest was retracting (caving in with each breath in the sternum area) slightly when she breathed. Later we gave her a feeding and layed her down on her tummy to sleep like always. About 9:00 she started to cough a lot and her oximeter started to beep, she started to throw up as I was turning her over to suction her. I could see that her lips were blue as well as her feet. We tried suctioning several more times and things got worse, and her oxygen levels started to drop into the 80’s then 70’s. After a few minutes we tried giving her some breaths with the resuscitation bag (that was the first time I’d ever had to do that) and giving her oxygen. The oxygen helped bring her oxygen levels up some but when I went to put her in the crib her eyes sort of rolled back and she became non-responsive even though her eyes were open. I was afraid she was having a seizure so I asked Steve to call 911.
Earlier that night some person parked on the wrong side of the street and the road ended up getting blocked off because another idiot parked next to that car. All night long people were driving down the road and getting stuck right in front of our house and honking their horns. So of course this would be the one night we’d have a medical emergency. So I’m watched for the aid car, hear the sirens approaching as they then drive PAST our house because they can’t park normally because of this car. The lady came out about then as the ambulance is pulled up behind her car, waiting for her to get in and pull out. Aaarrrggghh. Once they get in the house we go over her medical history and give her some time to see if things would turn around. We decided it would be best to take her to the hospital since she was requiring oxygen and was not really responding.
They did a chest x-ray and saw something they thought perhaps was bacterial pneumonia caused by aspiration of vomit. She had a high number of new white blood cells which tends to indicate the body is fighting off a bacterial infection. They also took a sample of her trach secretions to do testing so we were waiting for those results. We had to wait to get a room because the hospital was full and were finally admitted at 3:30am. Steve stayed home with Evie and Adrian and I called to give him updates.
Evie and Adrian were a little frightened while Ainsley was desatting and while waiting for the ambulance but once it got here they were excited to get to go in it. The two ladies driving the aid-car were really nice and reassuring. They got a little scared again when they drove Ainsley away but it helped that Steve stayed behind and they went to bed like normal. Evie, being her usual artistic self during this time made me a good night note and stuck it in my pocket as well as drew me a whole 8 ½”x 11” picture of us hugging to take with me to the hospital.
It turned out that the secretions tested positive for RSV and after another x-ray they were able to conclude that she did NOT also have bacterial pneumonia nor viral pneumonia. We really don’t know if she had a seizure. She does not have a history of seizures. I think the whole thing was just a bit much for her and she was kind of stunned.
We took her off the oxygen Sunday night and watched her. Monday she still had the chest retractions because she’s having to work harder to breath but she was oxygenating in the 90’s so we were able to leave the hospital and we got home at 8:00pm last night.
Here’s a little info about RSV that I copied from the tracheostomy.com website:
What is RSV?
RSV stands for respiratory syncytial virus, the most frequent cause of serious respiratory tract infections in infants and young children. This is such a common virus that virtually all children have been infected by RSV by the age of 3. In most children and adults, RSV results in a respiratory infection that is not distinguishable from a common cold. However, for infants and children with underlying conditions, such as prematurity, lung, heart and immune deficiency diseases, RSV can be a very serious respiratory illness requiring hospitalization.
Avoid crowded places and avoid contact with people who have cold symptoms. When a family member is sick, extra precautions must be taken by washing hands often and preventing the spread of infectious secretions on tissues and objects.
Today she’s tired and still working harder to breath than normal but is oxygenating at 98% without oxygen so I think in a few days she’ll be much better. I’ve got it too and am hoping to get some rest now that we’re home.
Even with RSV the girl is happy!
Then Friday evening I took her into the bath to give her a chance to move her legs with some support in the water (our newest form of physical therapy). When she was laying on the bath mat I saw that her chest was retracting (caving in with each breath in the sternum area) slightly when she breathed. Later we gave her a feeding and layed her down on her tummy to sleep like always. About 9:00 she started to cough a lot and her oximeter started to beep, she started to throw up as I was turning her over to suction her. I could see that her lips were blue as well as her feet. We tried suctioning several more times and things got worse, and her oxygen levels started to drop into the 80’s then 70’s. After a few minutes we tried giving her some breaths with the resuscitation bag (that was the first time I’d ever had to do that) and giving her oxygen. The oxygen helped bring her oxygen levels up some but when I went to put her in the crib her eyes sort of rolled back and she became non-responsive even though her eyes were open. I was afraid she was having a seizure so I asked Steve to call 911.
Earlier that night some person parked on the wrong side of the street and the road ended up getting blocked off because another idiot parked next to that car. All night long people were driving down the road and getting stuck right in front of our house and honking their horns. So of course this would be the one night we’d have a medical emergency. So I’m watched for the aid car, hear the sirens approaching as they then drive PAST our house because they can’t park normally because of this car. The lady came out about then as the ambulance is pulled up behind her car, waiting for her to get in and pull out. Aaarrrggghh. Once they get in the house we go over her medical history and give her some time to see if things would turn around. We decided it would be best to take her to the hospital since she was requiring oxygen and was not really responding.
They did a chest x-ray and saw something they thought perhaps was bacterial pneumonia caused by aspiration of vomit. She had a high number of new white blood cells which tends to indicate the body is fighting off a bacterial infection. They also took a sample of her trach secretions to do testing so we were waiting for those results. We had to wait to get a room because the hospital was full and were finally admitted at 3:30am. Steve stayed home with Evie and Adrian and I called to give him updates.
Evie and Adrian were a little frightened while Ainsley was desatting and while waiting for the ambulance but once it got here they were excited to get to go in it. The two ladies driving the aid-car were really nice and reassuring. They got a little scared again when they drove Ainsley away but it helped that Steve stayed behind and they went to bed like normal. Evie, being her usual artistic self during this time made me a good night note and stuck it in my pocket as well as drew me a whole 8 ½”x 11” picture of us hugging to take with me to the hospital.
It turned out that the secretions tested positive for RSV and after another x-ray they were able to conclude that she did NOT also have bacterial pneumonia nor viral pneumonia. We really don’t know if she had a seizure. She does not have a history of seizures. I think the whole thing was just a bit much for her and she was kind of stunned.
We took her off the oxygen Sunday night and watched her. Monday she still had the chest retractions because she’s having to work harder to breath but she was oxygenating in the 90’s so we were able to leave the hospital and we got home at 8:00pm last night.
Here’s a little info about RSV that I copied from the tracheostomy.com website:
What is RSV?
RSV stands for respiratory syncytial virus, the most frequent cause of serious respiratory tract infections in infants and young children. This is such a common virus that virtually all children have been infected by RSV by the age of 3. In most children and adults, RSV results in a respiratory infection that is not distinguishable from a common cold. However, for infants and children with underlying conditions, such as prematurity, lung, heart and immune deficiency diseases, RSV can be a very serious respiratory illness requiring hospitalization.
Avoid crowded places and avoid contact with people who have cold symptoms. When a family member is sick, extra precautions must be taken by washing hands often and preventing the spread of infectious secretions on tissues and objects.
Today she’s tired and still working harder to breath than normal but is oxygenating at 98% without oxygen so I think in a few days she’ll be much better. I’ve got it too and am hoping to get some rest now that we’re home.
Even with RSV the girl is happy!
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