Showing posts with label Medical. Show all posts
Showing posts with label Medical. Show all posts
Tuesday, April 12, 2011
Sunday, March 27, 2011
Sunday School Podcast - The Police Station and More
Timmy's ear tube(s) came out a little over a week ago. What was to follow? Of course, an ear infection in his left ear, his good ear.
After 3 days of being on an antibotic, Timmy spikes a temperature of 102.5 on Thursday Morning. I gave him a dose of Motrin, which brought the temperature down nicely. All day Timmy didn't spike a temperature. He was his smiling, happy, laughing self. In the early evening Timmy spiked another Temperature of 102.7. He was given a dose of Motrin, which brought the temperature down. Timmy showed no other sign of illness. His ear(s) aren't draining and they don't look like they may be inflamed.
Could this spike in temperature be a result of Daddy giving Timmy his 2nd 4mg. dose of Zanaflex, to try to help Timmy get back to sleep, following a middle of the night diaper change? I seem to recall something like this occuring awhile back, but can't remember if it was during an ear infection or if an illness followed the temperature spike.
I have my fingers crossed that the spike in temperature isn't a result of the antibotic masking some underlying horrible illness, which will flare up once the antibotic regiment is complete.
Unfortunately, being Timmy had a temperature he had to miss the field trip on Thursday to the Police Station. There were other awesome pictures of Timmy that were taken earlier in the week.
So enjoy the Podcast.
Friday, February 18, 2011
The Curse
There are two statements, which should NEVER be thought of voiced in the presence of Timmy. They are, "Good job Timmy! I'm proud of you" and "I have figured you out Timmy." If either of these statements are thought or voiced, Timmy will either refuse to repeat the task that he had accomplished perfectly. Or he will throw you a curve ball.
It was told to me that one of Timmy's teachers (I won't mention any names) made a similar statement to Timmy, "I've got you Timmy." So of course, today he threw us a curve ball.
In the past 7 years, when Timmy has had high blood glucose levels he has NEVER spilled ketones into his urine. His blood glucose levels have been well over 600mg/dl and NO ketones.
Even though Timmy has never spilled ketones, Timmy's Endocrinologist insists that when Timmy has a high blood glucose level that we test Timmy's ketones.
Timmy wears an insulin pump. Last night was a scheduled site change for his insulin pump infusion set. At bedtime Timmy's blood glucose level was slightly elevated (264). It was time to play the guessing game with Timmy's body. Is Timmy's glucose level elevated because we have a bad infusion set site? Is the insulin bad? Or is this just Timmy's body saying "Nah, Nah you can't figure me out!" So I opted to assume it was just Timmy's body. I treated the high level and gave Timmy his bedtime snack. I chose not to check ketones, being that I would have to wake Timmy up to retreive the cotton ball from his diaper in order to test for ketones.
Bad call! This morning when Merry, Timmy's Home Health Nurse arrived and checked Timmy's blood glucose level, it was 490. Yikes! Merry changed the infusion set site. After feeding Timmy breakfast and treating the carbs per Doctors orders, two hours following breakfast Merry decided it best that she check Timmy's blood glucose level again. Timmy's level was still high (450). Merry tested Timmy's urine for ketones. Have you guessed where I'm going with this story yet? Yep, you guessed correctly, Timmy had a moderate amount of ketones in his urine! After 7 years of NO ketones, we now have ketones.!? To say the least we were shocked. Merry even opened a brand new vial of test strips and got the same result.
Now dealing with Timmy's diabetes gets very scary. Diabetic Ketoacidosis is a very dangerous/serious condition. What signs if any will Timmy exhibit in relation to diabetic ketoacidosis? Up to this point, Timmy has NEVER exhibited any signs of either low or high blood glucose levels.
Where we will sail off to in our new diabetes adventure? We shall see. Timmy's body will determine our next port destination.
It was told to me that one of Timmy's teachers (I won't mention any names) made a similar statement to Timmy, "I've got you Timmy." So of course, today he threw us a curve ball.
In the past 7 years, when Timmy has had high blood glucose levels he has NEVER spilled ketones into his urine. His blood glucose levels have been well over 600mg/dl and NO ketones.
Even though Timmy has never spilled ketones, Timmy's Endocrinologist insists that when Timmy has a high blood glucose level that we test Timmy's ketones.
Timmy wears an insulin pump. Last night was a scheduled site change for his insulin pump infusion set. At bedtime Timmy's blood glucose level was slightly elevated (264). It was time to play the guessing game with Timmy's body. Is Timmy's glucose level elevated because we have a bad infusion set site? Is the insulin bad? Or is this just Timmy's body saying "Nah, Nah you can't figure me out!" So I opted to assume it was just Timmy's body. I treated the high level and gave Timmy his bedtime snack. I chose not to check ketones, being that I would have to wake Timmy up to retreive the cotton ball from his diaper in order to test for ketones.
Bad call! This morning when Merry, Timmy's Home Health Nurse arrived and checked Timmy's blood glucose level, it was 490. Yikes! Merry changed the infusion set site. After feeding Timmy breakfast and treating the carbs per Doctors orders, two hours following breakfast Merry decided it best that she check Timmy's blood glucose level again. Timmy's level was still high (450). Merry tested Timmy's urine for ketones. Have you guessed where I'm going with this story yet? Yep, you guessed correctly, Timmy had a moderate amount of ketones in his urine! After 7 years of NO ketones, we now have ketones.!? To say the least we were shocked. Merry even opened a brand new vial of test strips and got the same result.
Now dealing with Timmy's diabetes gets very scary. Diabetic Ketoacidosis is a very dangerous/serious condition. What signs if any will Timmy exhibit in relation to diabetic ketoacidosis? Up to this point, Timmy has NEVER exhibited any signs of either low or high blood glucose levels.
Where we will sail off to in our new diabetes adventure? We shall see. Timmy's body will determine our next port destination.
Tuesday, February 8, 2011
Feeding Tube Awareness
February 6-12, is Feeding Tube Awareness Week.
http://www.feedingtubeawareness.com/
This website was created by parents for parents, other family members, friends and strangers, to educate and to bring awareness. The website has good information, resources, family stories and practical tips and other general information of interest. Check it out.
There are a lot of misconceptions about feedding tubes. I would like to take the time to share our experience.
Timmy has had his feeding tube for 4 years. His tube was placed after his 2nd hospitalization with pneumonia. The doctors suspected that the pneumonia was due to Timmy aspirating. A swallow study showed no aspiration. We opted to go ahead with the feeding tube placement. We felt that it would be beneficial in the treatment of Timmy's diabetes and to administer medications.
The decision to have the feeding tube placed wasn't an easy one for us. At the time, we were so overwhelmed with the day to day care of Timmy's other complex medical needs. We felt that by having the feeding tube, we would only be adding more stress to our lives. In the end the pros outweighed the cons.
At first, we too had a lot of misconceptions. After speaking with Timmy's Gastro-Intestinal Doctor and other families who have children who have a feeding tube our fears and misconceptions we put to ease.
*We like to do a lot of travelling. We thought that by Timmy having a feeding tube we would be restricted as to where or how far we could go from home. Actually by Timmy having a feeding tube, we have opened up more travel possibilities. And travelling with Timmy is a lot easier. We don't have to worry about trying to find a resturant which has soft foods of the consistancy that Timmy can eat. We can give Timmy formula via his feeding tube over a 15-20 minutes and off we go. He has been feed. No worries.
*We had heard that "most" children who have feeding tubes, their feeding tube stomas stay infected all of the ime. In our case this isn't true. Over the past 4 years, Timmy's feeding tube stoma has never been infected. As long as the stoma is kept clean and dry, this cuts way down on the risk of an infection. We also apply a protective barrier cream (Nystatin or Bactroban) twice daily, which has helped.
*Some people are under the impression that those with feeding tubes can not eat orally. In our case, Timmy can and does eat and drink orally. Timmy's feeding tube was primarily placed to administer daily medications, to help us better manage Timmy's diabetes and to help keep him hydrated when he is sick and refuses to eat/drink. There are some children who can not eat/drink orally. The list of reasons are long, but a few examples may include, possibility of aspiration, cleft lip/palate, lack of muscle tone in the neck/face oral sensory issues.
*Some people are under the impression that a child who has a feeding tube can not take a bath or go swimming. This isn't true. Timmy takes a bath every night. He has been swimming many times and even to the beach. As long as the feeding tubes balloon is properly inflated, which creates a seal around the feeding tube stoma, no water can get into the body.
*A child who has a feeding tube can have "tummy" time on the floor to play. Timmy loves to lay on the floor and he has never complained about the feeding tube hurting his stomach. We have not noticed any redness or bruising after Timmy has spent a while playing on the floor on his stomach.
If a child has reflux, the child's gastro-intestinal Doctor may suggest when placing the feeding tube that a Nissen Fundoplacation be preformed as well. This is a procedure in which the bottom portion of the esophagus and the top portion of the stomach are "tied" off to prevent food from re-entering the esophagus from the stomach. (acid reflux)
Some parents have stated that if they feed their child too fast via the feeding tube, this causes the child's reflux to become worse. We have noticed this as well with Timmy. When we feed Timmy via his feeding tube, if we feed him over 15-20 minutes, this reduces his reflux. Timmy also had a Nissen Fundoplacation when he had his feeding tube placed, but we think that the Nissen is failing and needs to be revised. In some medically complex children, having to have the Nissen Fundoplacation revised is a possibility. The revision is a surgical procedure, which may require the child to have to be hospitalized for a few days following the surgery.
Help spread the word to bring awareness and to educate. So that those who have feeding tubes can one day be treated as an equal part in society.
Tuesday, February 1, 2011
Family Recipe For Excitment
Over the past 7 years we have tried this recipe for "Weekend Excitment." Today the recipe was perfected. Here is what you need to make your own "Weekend Excitment."
INGREDIENTS....
*A Friday evening or early Saturday morning (Friday evenings work best)
*A forecast for a significient snowfall for the Northeast
*A Little Boy (A Little gril may be subtituted)
*An insulin pump (Any medical equipment necessary to substain life may be substituted)
*A 6 month old who is sick with the flu and a cronic ear infection that needs to be fed, changed and wants attention, so they are screaming to the top of their lungs
*Long acting insulin with syringes (Any medication that can be added to the normal regiment will work)
*Prayer (optional)
*Ear plugs (optional)
WHAT YOU NEED TO DO....
1. Combine the weekend day and the significient snowfall in the Northeast. Set aside.
INGREDIENTS....
*A Friday evening or early Saturday morning (Friday evenings work best)
*A forecast for a significient snowfall for the Northeast
*A Little Boy (A Little gril may be subtituted)
*An insulin pump (Any medical equipment necessary to substain life may be substituted)
*A 6 month old who is sick with the flu and a cronic ear infection that needs to be fed, changed and wants attention, so they are screaming to the top of their lungs
*Long acting insulin with syringes (Any medication that can be added to the normal regiment will work)
*Prayer (optional)
*Ear plugs (optional)
WHAT YOU NEED TO DO....
1. Combine the weekend day and the significient snowfall in the Northeast. Set aside.
2. Play with, hug, and kiss the little boy, who has brittle diabetes. And who has a pancreas with a mind of its own, which causes the little boy to exhibit absolutely no normal signs/symptoms like a typical daibetic.
2.
3. Slowly add the insulin pump to the little boy. This pump will help substain life and help the little boy grow and flurish.
WARNING: WITHOUT WARNING THE INSULIN PUMP WILL ONLY FAIL ON WEEKENDS!
4. Briskly add the sick screaming baby. And insert earplugs into your ears if desired.
5. Pray that there is a current standing prescription long lasting insulin on file at your pharmacy of choice. Pray that you are able to reach the Endocrinologist by phone or pager being that it is a weekend and he does have his own family and life to lead. Pray that the sick screaming baby will fall asleep, long enough for you to take care of the emergency at hand.
6. Call pharmacy. Have needed insulin. Call Endocrinologist. Reach Endocrinologist. Get orders for the correct amount of insulin to give. Call Animas to try to trouble shoot the insulin pumps problem. COMPLETE PUMP FAILURE.
7. Combine the weekend and predicted snowfall to the other 6 ingredients.
Product is complete after 72 hours of no sleep, head full of grey hair, all fingernails are jagged, and complete loss of sanity AND the replacement insulin pump arrives via UPS.
Friday, January 28, 2011
Round Three With A Twist
Winter is my least favorite season. I hate having to bundle up in layer upon layer of clothing. I hate being cold. I hate when my babies get sick and have to suffer through the aches, pains, fevers, spitting up, loss of appetite etc. that goes along with the flu or a cold. It breaks my heart that during these illnesses that I can't just take away all of their blah and leave them happy, smiley and care free once again.
During the winter it seems that no matter how careful we are by frequently washing hands and by sanitizing items and surfaces once a person has finished using it, the inevable happens, someone gets sick.
Timmy was the lucky or should I say the unlucky one. He was the first in the family to be diagnosed with the flu. For a child with a compromised immune system, he ended up having the mildest case of the flu that I have ever seen, thank goodness. Like most kiddos who have compromised respiratory systems, when Timmy gets sick his condition can go downhill very rapidly. Forty-eight hours with a temperature, 2 days of missing school, and a productive cough, this was the extent of Timmy's flu symptoms and its full course.
Now Emily and Nate both have been diagnosed with the flu. Emily's symptoms seem to be similar to those Timmy has. Poor Nate has not only these symptoms, but the achiness, runny nose, spitting up, and a cronic ear infection. It has been 4 days since he has shown symptoms of the flu and he just is starting to turn the corner for the better. It breaks my heart to look into his puppy dog eyes, which seem to be pleading with me to take away the aches and yuckiness of his illness and all I can do is cuddle with him and try to will the medication to work faster and will his body to get well soon.
I'm counting down the days until the first of April. At which time here the weather should be much warmer. My favorite season of the year. Only 61 days to go!
During the winter it seems that no matter how careful we are by frequently washing hands and by sanitizing items and surfaces once a person has finished using it, the inevable happens, someone gets sick.
Timmy was the lucky or should I say the unlucky one. He was the first in the family to be diagnosed with the flu. For a child with a compromised immune system, he ended up having the mildest case of the flu that I have ever seen, thank goodness. Like most kiddos who have compromised respiratory systems, when Timmy gets sick his condition can go downhill very rapidly. Forty-eight hours with a temperature, 2 days of missing school, and a productive cough, this was the extent of Timmy's flu symptoms and its full course.
Now Emily and Nate both have been diagnosed with the flu. Emily's symptoms seem to be similar to those Timmy has. Poor Nate has not only these symptoms, but the achiness, runny nose, spitting up, and a cronic ear infection. It has been 4 days since he has shown symptoms of the flu and he just is starting to turn the corner for the better. It breaks my heart to look into his puppy dog eyes, which seem to be pleading with me to take away the aches and yuckiness of his illness and all I can do is cuddle with him and try to will the medication to work faster and will his body to get well soon.
I'm counting down the days until the first of April. At which time here the weather should be much warmer. My favorite season of the year. Only 61 days to go!
Saturday, October 9, 2010
Doctor Doctor
Wheeeew, what a week! This past week was filled with Doctor appointments and 12-+ loads of laundry. If I had 3 wishes, after this week the first wish would be for everyone to be sooo healthy that all doctors would have to go out of business. Second wish would be for nudity to be an optional choice. (Not that I would actually go around nude, but I would give it some serious thought. I hate doing laundry!) And my third wish would be for the 2 previous wishes to come true.
On Monday, Oct. 4th Nate and I had appointments with our eye specialists at Duke Eye Center. Not much to report from my visit. Everything is looking great. At my next visit my doctor will have to do some touch up lasering to try to get rid of a membrane which forms behind the prosthesis and makes the vision a bit distorted. The distortion isn't that noticable unless I'm reading. My IOP (Inner Occular Pressure) was good. So restarting my eyedrops to control my glaucoma isn't necessary at this time.
Nate's IOP was down at this visit, thank goodness. The IOP was 19 in his left eye and 15 in his right. Optimal is in the low teens. The plan at this point is to continue to closely follow Nate and frequently check his IOP. Hopefully the eye pressure will remain down. I don't want to have to even consider the thought of having to give Nate eyedrops at such a young age. But of course, we will do whatever is necessary to save what vision he has. Dr. Young also referred Nate to our local Blind Services, so that he can start getting vision therapy.
Nate, myself and Dr. Afshari, my corneal specialist had our picture taken together, for a human interest article which will be featured in VISION a magazine published by Duke Eye Center. The article will be published in the magazine later this year.
On Wednesday, Oct. 6th. Nate had an appointment with his Geneticist at UNC. We are having him tested for the PAX-6 gene mutation that Floyd and I carry, being that he has a visual impairment. Nate also has an MRI scheduled for Oct. 29th to rule out an possibilities of him having a brain malformation. We are awaiting a date for his ABR (Audiotory Brainstem Response), a more extensive hearing test than the newborn hearing screening. Nate passed his newborn hearing screening, but we want to cover all of the bases and rule out any possibilities of problems, which are associated with the PAX-6 gene mutation. Nate also had blood drawn to test his hormone levels and to check him for diabetes. We are still awaiting those results.
Thursday, Oct. 7th. Timmy had a follow up appointment with his Urologist. She removed a stitch from his "winkie" which failed to dissolve on its own. We discussed the possibility of her needing to revise Timmy's "winkie." Now that he has been circumcised, Timmy pee-pees straight up into the air. Timmy has been doing GREAT with his potty training. Now that he is unable to get his pee-pee stream to go into the potty, he is refusing to go in the potty, holding his pee for as long as possible, which is causing his bladder to spasm and Timmy to be in pain, which in turn Timmy goes toto a full blown tantrum. Being that the swelling can take up to 6 months to resolve, she wants to wait and reexamine Timmy in early March to see if things have improved.
Being that Timmy has a Micro-winkie, we have spoken with his Endocrinologist about doing another 3-4 months of testerone injections, to hopefully help his winkie grow. Timmy had testerone injections when he was about 2 years old, which helped to improve his winkie growth. But Timmy's Endocrinologist won't consider starting the treatment until after the Urologist has released Timmy from under her care.
Zach also had 2 appointments on Thursday, Oct. 7th. His 1st. appointment was with his therapist. The therapist decided not to restart Zach on his medication for ADHD. He wants to wait to see if In-Home-Therapy along with better structured behavior control will benefit Zach better.
In my opinion, I feel that Zach will benefit more from the structured behavioral modification rather than medications. In the past when he was taking medications for his ADHD I honestly didn't see any improvement. Except for the first couple of weeks while the medications was working its way into his system. At this time Zach was more calm and focused.
Zach's 2nd appointment was with the dentist. Earlier this summer Zach had a tooth infection and his dentist put him on a round of antibotics. This was a follow up appointment to discuss whether the tooth should come out or do nothing being that Zach wasn't having any pain. We opted to do nothing at this time, being that the tooth is already loose and may come out on its own. If and When the tooth does come out Zach will need a bridge put in the tooths place.
Thank goodness we have an almost 3 week break before the next cluster of appointments out of town begins.
On Monday, Oct. 4th Nate and I had appointments with our eye specialists at Duke Eye Center. Not much to report from my visit. Everything is looking great. At my next visit my doctor will have to do some touch up lasering to try to get rid of a membrane which forms behind the prosthesis and makes the vision a bit distorted. The distortion isn't that noticable unless I'm reading. My IOP (Inner Occular Pressure) was good. So restarting my eyedrops to control my glaucoma isn't necessary at this time.
Nate's IOP was down at this visit, thank goodness. The IOP was 19 in his left eye and 15 in his right. Optimal is in the low teens. The plan at this point is to continue to closely follow Nate and frequently check his IOP. Hopefully the eye pressure will remain down. I don't want to have to even consider the thought of having to give Nate eyedrops at such a young age. But of course, we will do whatever is necessary to save what vision he has. Dr. Young also referred Nate to our local Blind Services, so that he can start getting vision therapy.
Nate, myself and Dr. Afshari, my corneal specialist had our picture taken together, for a human interest article which will be featured in VISION a magazine published by Duke Eye Center. The article will be published in the magazine later this year.
On Wednesday, Oct. 6th. Nate had an appointment with his Geneticist at UNC. We are having him tested for the PAX-6 gene mutation that Floyd and I carry, being that he has a visual impairment. Nate also has an MRI scheduled for Oct. 29th to rule out an possibilities of him having a brain malformation. We are awaiting a date for his ABR (Audiotory Brainstem Response), a more extensive hearing test than the newborn hearing screening. Nate passed his newborn hearing screening, but we want to cover all of the bases and rule out any possibilities of problems, which are associated with the PAX-6 gene mutation. Nate also had blood drawn to test his hormone levels and to check him for diabetes. We are still awaiting those results.
Thursday, Oct. 7th. Timmy had a follow up appointment with his Urologist. She removed a stitch from his "winkie" which failed to dissolve on its own. We discussed the possibility of her needing to revise Timmy's "winkie." Now that he has been circumcised, Timmy pee-pees straight up into the air. Timmy has been doing GREAT with his potty training. Now that he is unable to get his pee-pee stream to go into the potty, he is refusing to go in the potty, holding his pee for as long as possible, which is causing his bladder to spasm and Timmy to be in pain, which in turn Timmy goes toto a full blown tantrum. Being that the swelling can take up to 6 months to resolve, she wants to wait and reexamine Timmy in early March to see if things have improved.
Being that Timmy has a Micro-winkie, we have spoken with his Endocrinologist about doing another 3-4 months of testerone injections, to hopefully help his winkie grow. Timmy had testerone injections when he was about 2 years old, which helped to improve his winkie growth. But Timmy's Endocrinologist won't consider starting the treatment until after the Urologist has released Timmy from under her care.
Zach also had 2 appointments on Thursday, Oct. 7th. His 1st. appointment was with his therapist. The therapist decided not to restart Zach on his medication for ADHD. He wants to wait to see if In-Home-Therapy along with better structured behavior control will benefit Zach better.
In my opinion, I feel that Zach will benefit more from the structured behavioral modification rather than medications. In the past when he was taking medications for his ADHD I honestly didn't see any improvement. Except for the first couple of weeks while the medications was working its way into his system. At this time Zach was more calm and focused.
Zach's 2nd appointment was with the dentist. Earlier this summer Zach had a tooth infection and his dentist put him on a round of antibotics. This was a follow up appointment to discuss whether the tooth should come out or do nothing being that Zach wasn't having any pain. We opted to do nothing at this time, being that the tooth is already loose and may come out on its own. If and When the tooth does come out Zach will need a bridge put in the tooths place.
Thank goodness we have an almost 3 week break before the next cluster of appointments out of town begins.
Friday, September 24, 2010
2 - Month Check - Up
Muffin had his 2-month old check-up with his Pediatrician this morning. He weighs 11lbs. 11oz and is 22.5in. tall. He is in the 50th precentile for weight and height.
We discussed the use of Vitamin D suppliments, being that Muffin is strictly breastfed and breast milk lacks in the daily amount of Vitamin D. We also discussed the findings of Aniridia and the possibility of Nate having inherited a mutated copy of the PAX-6 gene. The Pedi is going to refer him to see Dr. Muge Calikoglu, a geneticist at UNC. And is going to work along with her to schedule Nate an MRI and ABR (Audiotory Brainstem Response) hearing test, just to rule out any possible problems.
The Pedi feels that Nate is right on target with his development. So at this time there is no concerns. How well Nate can see is still up in the air. It will probably be months before we have an actual idea. But we do know that he can see, at least light. When someone turns on or off the light in the room in which Nate is, he will startle. And he reaches for toys on the toybar on his bouncy seat and likes to stare at his mobile, which has sound as well as lights.
Nate had his 1st set of immunizations. Holding him and seeing him cry out in pain, hurt me just as much, if not more, than the needle sticks hurt him. We enjoyed some nice cuddle time afterwards and all was forgiven. But why is it that Moms are always chosen to do the dirty task of holding down the baby/child when they get their immunizations?
Monday, September 20, 2010
The Good, The Bad
When in life you are given lemons, make lemonaid. When I first read this quote 6 years ago, I knew I had to find something positive to focus on when given bad news or faced with a difficult situation, just to be able to keep my sanity. Today was no exception......
Today Emily, Nathaniel and myself all had appointments at Duke Eye Center. My visit was with Dr. Afshari, my corneal specialist. This was my 3 week post-surgery visit. Everything looks great! I can't put into words just how happy I am to be able to see once again. To be able to help take care of Timmy's medical needs. To be able to take care of my own personal needs. To be able to read with Emily and play computer games with Zach. To be able to continue with this blog. And the most important thing in my life, is once again the ability to be able to read. Reading is my life. Without the ability to read I felt lost and thirsted for information, knowledge and the satisfaction that comes with having read a good book. I so missed doing all of these thing for 6 looong months.
Emily and Nathaniel both had visits with a Pediatric Genetics Opthalmologist. Floyd took the kids over for their scheduled appointment, while I waited to be seen for my appointment.
Emily's eyes were checked first. Her vision is perfect. We didn't need an opthalmologist to tell us this. Emily misses nothing! In the mornings before we leave the house to go wait for the school bus (her bus stop is directly across the street from the house), Emily will open the window shade so that she is able to see through the window what she is missing in the house. Timmy's nurse's will hear about whatever she may have missed if she feels that it was important enough that she have been involved.
I walked in just as Dr. Young had finished examining Nate. I immediately knew something was wrong, aside from the fact that Muffin missed his Mommy and needed to cuddle, when Floyd suggested that I take Nate, sit and cuddle with him, that he needed his Mommy after what Dr. Young just discovered. My heart dropped to my stomach. It took every ounce of my being for me not to cry. Voices in my head kept saying NO THIS CAN'T BE TRUE!.... SEEK A SECOND AND IF NEEDED A THIRD OPINION! My heart knew the real truth, even though my head is still in denial. Before I got pregnant I knew the odds were stacked against me. I was willing to take that gamble. With Nate now having the diagnosis of aniridia and possibly glaucoma, I feel I still won the genetics gamble. Nate is such a good natured baby. Crying only when he is wet or hungry. In such a short time he has brought so much joy to our lives. And he makes me feel that our family is complete.
Now is where I start to make my lemonaid.....
Who better to care for and raise a baby with a visual impairment, but 2 parents who are visually impaired. We have the knowledge, skill and have mastered the tricks necessary for survival as a visually impaired child/adult in what is sometimes a not so friendly world.
We received Nate's diagnosis early. Now we are able to start the process of getting him vision therapy, which will aid Nate in learning to use any useful vision that he may have. If we had found out months or even years down the road, we would have lost a lot of ground in getting Nate the assistance he needs. If he should have glaucoma, by not knowing the diagnosis early any useful vision could be lost due to damage to the optic nerve from the inner occular pressure.
Learning the diagnosis now, we have the opportunity to seek getting Nate an MRI to rule out any brain malformations, which may need addressing with medical intervention or other therapies.
Being that some people with aniridia have hearing problems, we have started the necessary process of getting Nate an ABR (audiotory Brainstem Response) hearing test. Nate passed his newborn hearing screening, but the ABR is a more extensive test and will help rule out any problems, which may have been missed with the standard newborn hearing screening. Having this information early, if Nate should have a hearing problem, we will be able to get hearing therapy started and have him fitted for hearing aids or other devices if needed.
We know that Muffin can see. He startles when someone turns on or off a light in the room. He stares at his crib mobile and reaches for toys on the toybar on his bouncy seat.
He can hear, but how well? I feel that his hearing is fine. He startles to loud or unexpected noises. And he calms when crying when spoken or sung to quietly.
Starting in my 2nd trimester of pregnancy, I had an ultrasound 2 times a month. In my 3rd trimester, I had an ultrasound once a week. Even though ultrasounds are a tool and aren't 100% perfect in finding problems, I feel that with all of the ultrasounds that I had if something serious was wrong it "should" have been seen. So far Nate has reached all of his developmental milestones, which also suggest that his brain is functioning properly.
So the plan as of now is for Nate to have a consultation with a Genetics Doctor. We have requested that Nate be seen by Dr. Muge Calikoglu at UNC. She is Timmy's Genetist and the wife to Timmy's Endocrinologist. Nate will have a blood draw to test him for a mutation of the PAX-6 gene.
Physically, I'm up for the challenge of caring for another child with a visual impairment. Mentally and Emotionally, I'm still in shock and denial. I keep asking WHY this has happened yet again to our third son? Is there anything I could have done differently before and during my pregnancy to have prevented this from happeneing once again? Why did GOD choose Nate to have this affliction? I know the answer to these questions and all of the other questions, which keep popping into my head, but the questions along with the known answers keep cluttering my brain.
You are probably asking yourself, if I knew that Nate having a visual impairment was a possibility would I be so in shock and in denial? For nine months I hoped and prayed that he would be able to see. Following Nate's birth the Pediatrician gave Nate a clean bill of health from head to toe. We even asked specifically his opinion in regards to Nate's eye sight. Nate's Pediatrician's opinion was that Nate's eyes looked perfectly healthy. I was so releived. I thought that all of my prayers had been heard and answered. Nate would be able to see to run and play with his siblings and friends. He would be able to lay on a blanket outside at night and see to wish upon a falling star. He would be able to see the wonders of a rainbow following the rain. He would be able to see the true beauty of the colors in nature. To see the clouds in the sky on a clear sunny day and form pictures from these fluffy clouds in his mind. And in later years, possibly see the face of his newborn son or daughter. Now there is uncertainty as to whether Nate will be able to do any of these things.
In the end I know soon enough I'll come around to reality and accept the fact that Nate is visually impaired. I'll wipe away the tears. Stop blaming myself for being so selfish in wanting another baby after knowing the odds of having a baby who would have a disability. I'll go on with my life, Loving, Caring and Protecting Nate, because these things won't change with his new diagnosis.
With all of my heart and soul, Mommy Loves you Muffin!!!!
Today Emily, Nathaniel and myself all had appointments at Duke Eye Center. My visit was with Dr. Afshari, my corneal specialist. This was my 3 week post-surgery visit. Everything looks great! I can't put into words just how happy I am to be able to see once again. To be able to help take care of Timmy's medical needs. To be able to take care of my own personal needs. To be able to read with Emily and play computer games with Zach. To be able to continue with this blog. And the most important thing in my life, is once again the ability to be able to read. Reading is my life. Without the ability to read I felt lost and thirsted for information, knowledge and the satisfaction that comes with having read a good book. I so missed doing all of these thing for 6 looong months.
Emily and Nathaniel both had visits with a Pediatric Genetics Opthalmologist. Floyd took the kids over for their scheduled appointment, while I waited to be seen for my appointment.
Emily's eyes were checked first. Her vision is perfect. We didn't need an opthalmologist to tell us this. Emily misses nothing! In the mornings before we leave the house to go wait for the school bus (her bus stop is directly across the street from the house), Emily will open the window shade so that she is able to see through the window what she is missing in the house. Timmy's nurse's will hear about whatever she may have missed if she feels that it was important enough that she have been involved.
I walked in just as Dr. Young had finished examining Nate. I immediately knew something was wrong, aside from the fact that Muffin missed his Mommy and needed to cuddle, when Floyd suggested that I take Nate, sit and cuddle with him, that he needed his Mommy after what Dr. Young just discovered. My heart dropped to my stomach. It took every ounce of my being for me not to cry. Voices in my head kept saying NO THIS CAN'T BE TRUE!.... SEEK A SECOND AND IF NEEDED A THIRD OPINION! My heart knew the real truth, even though my head is still in denial. Before I got pregnant I knew the odds were stacked against me. I was willing to take that gamble. With Nate now having the diagnosis of aniridia and possibly glaucoma, I feel I still won the genetics gamble. Nate is such a good natured baby. Crying only when he is wet or hungry. In such a short time he has brought so much joy to our lives. And he makes me feel that our family is complete.
Now is where I start to make my lemonaid.....
Who better to care for and raise a baby with a visual impairment, but 2 parents who are visually impaired. We have the knowledge, skill and have mastered the tricks necessary for survival as a visually impaired child/adult in what is sometimes a not so friendly world.
We received Nate's diagnosis early. Now we are able to start the process of getting him vision therapy, which will aid Nate in learning to use any useful vision that he may have. If we had found out months or even years down the road, we would have lost a lot of ground in getting Nate the assistance he needs. If he should have glaucoma, by not knowing the diagnosis early any useful vision could be lost due to damage to the optic nerve from the inner occular pressure.
Learning the diagnosis now, we have the opportunity to seek getting Nate an MRI to rule out any brain malformations, which may need addressing with medical intervention or other therapies.
Being that some people with aniridia have hearing problems, we have started the necessary process of getting Nate an ABR (audiotory Brainstem Response) hearing test. Nate passed his newborn hearing screening, but the ABR is a more extensive test and will help rule out any problems, which may have been missed with the standard newborn hearing screening. Having this information early, if Nate should have a hearing problem, we will be able to get hearing therapy started and have him fitted for hearing aids or other devices if needed.
We know that Muffin can see. He startles when someone turns on or off a light in the room. He stares at his crib mobile and reaches for toys on the toybar on his bouncy seat.
He can hear, but how well? I feel that his hearing is fine. He startles to loud or unexpected noises. And he calms when crying when spoken or sung to quietly.
Starting in my 2nd trimester of pregnancy, I had an ultrasound 2 times a month. In my 3rd trimester, I had an ultrasound once a week. Even though ultrasounds are a tool and aren't 100% perfect in finding problems, I feel that with all of the ultrasounds that I had if something serious was wrong it "should" have been seen. So far Nate has reached all of his developmental milestones, which also suggest that his brain is functioning properly.
So the plan as of now is for Nate to have a consultation with a Genetics Doctor. We have requested that Nate be seen by Dr. Muge Calikoglu at UNC. She is Timmy's Genetist and the wife to Timmy's Endocrinologist. Nate will have a blood draw to test him for a mutation of the PAX-6 gene.
Physically, I'm up for the challenge of caring for another child with a visual impairment. Mentally and Emotionally, I'm still in shock and denial. I keep asking WHY this has happened yet again to our third son? Is there anything I could have done differently before and during my pregnancy to have prevented this from happeneing once again? Why did GOD choose Nate to have this affliction? I know the answer to these questions and all of the other questions, which keep popping into my head, but the questions along with the known answers keep cluttering my brain.
You are probably asking yourself, if I knew that Nate having a visual impairment was a possibility would I be so in shock and in denial? For nine months I hoped and prayed that he would be able to see. Following Nate's birth the Pediatrician gave Nate a clean bill of health from head to toe. We even asked specifically his opinion in regards to Nate's eye sight. Nate's Pediatrician's opinion was that Nate's eyes looked perfectly healthy. I was so releived. I thought that all of my prayers had been heard and answered. Nate would be able to see to run and play with his siblings and friends. He would be able to lay on a blanket outside at night and see to wish upon a falling star. He would be able to see the wonders of a rainbow following the rain. He would be able to see the true beauty of the colors in nature. To see the clouds in the sky on a clear sunny day and form pictures from these fluffy clouds in his mind. And in later years, possibly see the face of his newborn son or daughter. Now there is uncertainty as to whether Nate will be able to do any of these things.
In the end I know soon enough I'll come around to reality and accept the fact that Nate is visually impaired. I'll wipe away the tears. Stop blaming myself for being so selfish in wanting another baby after knowing the odds of having a baby who would have a disability. I'll go on with my life, Loving, Caring and Protecting Nate, because these things won't change with his new diagnosis.
With all of my heart and soul, Mommy Loves you Muffin!!!!
Tuesday, February 23, 2010
Who;s Sentimental?
Meet Scratchy Bunny
Timmy received Scratchy Bunny for his 1st Easter, at 5 months of age. Timmy hasn't been seperated from Scratchy Bunny over the past almost 6 years. He sleeps with him and plays with him during the day. Scratchy Bunny has been with Timmy during every hospitalization and sleep study. Scratchy Bunny is made from a rough, coarse material. I believe this is one reason that Timmy loves Scratchy Bunny so. Over the past almost 6 years, Scratchy Bunny has had to undergo many repair surgeries to help keep him in tact.
Tonight Timmy and Daddy are at UNC for a sleep study. Dr. Z (ENT) requested the sleep study to make sure that Timmy is doing well at night with his breathing, before he takes Timmy into surgery in early April to surgerically close Timmy's trach stoma.
This time Scratchy Bunny did not go along. This was my decision. I now feel so terribly bad, because I feel like I have let Timmy down by having him to leave his favorite toy which has always been with him behind. I know that I'm the only one who feels bad and is upset that Scratchy Bunny isn't with Timmy. Timmy has other stuffed toys which he likes just as much as Scratchy Bunny. He has a soft giraffe and 2 GUND stuffed toys, a tiger and a monkey. Both the tiger and monkey are made from a coarse, rough material, but not the same as Scratchy Bunny.
Timmy took Melman, his giraffe along with him tonight for the sleep study. When Daddy called, he said that Timmy was all tucked in with Melman and on his way to dreamland.
So why do I feel so terribly bad? Maybe it is because I'm scared to pack Scratchy Bunny away. I'm afraid that if Scratchy is packed away I'm also putting away apart of Timmy's past in which has been physically and emotionally difficult at times, but yet precious and rewarding. I fear that if I do give in and pack Scratchy Bunny away, I'm admiting that I'm willing to let my little boy grow up. That I'm mentally and emotionally ready to completely put the past behind and dive head first into a future with Timmy which will most likely be filled with uncertainities and no true direction. Scratchy hasn't only been Timmy's security toy, but it seems that he has been mine as well.
So will I give in and pack Scratch away? Right now I'm too upset to answer. Maybe tomorrow or one day in the near future both Timmy and I will together agree and put Scratchy away. But for now Scratchy is awaiting Timmy's return laying on Timmy's pillow.
After dinner and a bath, Emily and I spent some much needed and deserved quality time together. We read Emily's school library book, which Emily really enjoyed.
The book is about a little boy who made a sail boat from a pencil, a cork and some cloth. The boy took his boat to the lake one day to play. He held tightly to a string which was attached to his boat. A storm came up and he accidently let the string go. The storm took the sail boat far out onto the lake. Where the small sail boat encountered many different larger boats. A fishing boat came along and helped the small sail boat back to shore, where it was reunited with the boy. The samll sail boat and the boy both were so excited to once again be back together.
After reading the book, we cuddled and rocked while watching what seemed like a zillion episodes of SpongeBob! That is one CRAZY cartoon. Emily went to bed without any fussing or excuses for needing to get up.
The perfect endong to a beautifully warm day!
Wednesday, February 17, 2010
Two Doctors Appointments Today
On the road again. That is how it seems to be here lately. Taking Timmy to see a doctor about once or twice a week. Timmy is a very healthy child. So it would seem that he wouldn't have so many doctor visits. But somehow he does. I guess we should count our blessings that Timmy is so healthy and just start enjoying the looong car rides.
Timmy's medical team of doctors consists of Neurologist, orbital plastic surgeon, occularist, ENT, Endocrinologist, Cardi0logist, Urologist and Pulmonologist. These doctors are divided between our tow large state hospitals, Duke and UNC.
We left home around 9:30 for our 1st appointment at 12:30 with Endocrinology at UNC. Timmy has the WORLD'S GREATEST Endocrinologist!!!! Dr. Ali took time out of "his" busy schedule to make time to see Timmy. Most doctors would ask that you just schedule an appointment when they are seeing their patients in clinic. But Dr. Ali made time to see Timmy outside of scheduled clinic time.
Dr. Ali is very happy at how well we have been managing Timmy's blood glucose levels. Sshhhh, don't tell Timmy this, but we have him figured out to the point that we are able to keep his blood glucose levels pretty stable, between 70-170mg/dl. Now if Timmy should happen to hear anyone say that we have him figured out his body would surely find a way to throw a wrench into the mix to throw us off. So there were no insulin dosage changes necessary. Unfortunately Dr. Ali hadn't yet received the results to Timmy's blood work from Feb. 9th. As soon as he gets the results he will call us and let us know if we need to increase Timmy's thyroid medication. We are anxiously awaiting the results to Timmy's cholesterol level. Dad has taken it upon himself to make ALL of Timmy's meals each month from scratch, cutting out excessive preservatives, fats and cholesterol. Timmy has also been getting CorOmega 1x a day. Due to the mutation in Timmy's PAX6 gene, he is predestine to have elevated cholesterol levels, which can not be controlled by diet or medications. We are hopeful that being Timmy NEVER plays by the rules of any Medical Game, we are able to beat the odds and CAN control his cholesterol at least a little with diet and medication.
Our 2nd appointment was with ENT. Dr. Z was very pleased at how well Timmy is doing since his trach was removed in July 09. We told him that Timmy very well with his 1st upper respiratory infection. We discussed what we would like him to do when he takes Timmy into surgery in early April to close the trach stoma. I asked if he would look at Timmy's upper and lower airway to make certain that everything looks good before he completely closes off the stoma. And look in Timmy's ears and clear out any wax and replace the ear tubes if necessary. Dr. Z wants another sleep study before surgery to make sure that Timmy isn't having any trouble while sleeping. So this has been scheduled for Tuesday, Feb. 23rd. Even though Timmy's trach stoma is still open, it is not open enough that Timmy is able to pass any air through the stoma. So pray that everything goes well with the sleep study so that we are able to proceed with the surgery to close the trach stoma.
After all was said and done, we made it back home a little before 7:00pm.
I can't believe it, but Timmy does NOT have any doctors appointments in March. Lets not tell Timmy because if he knew this he would find someone to go see. I can't remember this EVER happening before. What we do we with all of the extra time we will have on our hands???
Timmy's medical team of doctors consists of Neurologist, orbital plastic surgeon, occularist, ENT, Endocrinologist, Cardi0logist, Urologist and Pulmonologist. These doctors are divided between our tow large state hospitals, Duke and UNC.
We left home around 9:30 for our 1st appointment at 12:30 with Endocrinology at UNC. Timmy has the WORLD'S GREATEST Endocrinologist!!!! Dr. Ali took time out of "his" busy schedule to make time to see Timmy. Most doctors would ask that you just schedule an appointment when they are seeing their patients in clinic. But Dr. Ali made time to see Timmy outside of scheduled clinic time.
Dr. Ali is very happy at how well we have been managing Timmy's blood glucose levels. Sshhhh, don't tell Timmy this, but we have him figured out to the point that we are able to keep his blood glucose levels pretty stable, between 70-170mg/dl. Now if Timmy should happen to hear anyone say that we have him figured out his body would surely find a way to throw a wrench into the mix to throw us off. So there were no insulin dosage changes necessary. Unfortunately Dr. Ali hadn't yet received the results to Timmy's blood work from Feb. 9th. As soon as he gets the results he will call us and let us know if we need to increase Timmy's thyroid medication. We are anxiously awaiting the results to Timmy's cholesterol level. Dad has taken it upon himself to make ALL of Timmy's meals each month from scratch, cutting out excessive preservatives, fats and cholesterol. Timmy has also been getting CorOmega 1x a day. Due to the mutation in Timmy's PAX6 gene, he is predestine to have elevated cholesterol levels, which can not be controlled by diet or medications. We are hopeful that being Timmy NEVER plays by the rules of any Medical Game, we are able to beat the odds and CAN control his cholesterol at least a little with diet and medication.
Our 2nd appointment was with ENT. Dr. Z was very pleased at how well Timmy is doing since his trach was removed in July 09. We told him that Timmy very well with his 1st upper respiratory infection. We discussed what we would like him to do when he takes Timmy into surgery in early April to close the trach stoma. I asked if he would look at Timmy's upper and lower airway to make certain that everything looks good before he completely closes off the stoma. And look in Timmy's ears and clear out any wax and replace the ear tubes if necessary. Dr. Z wants another sleep study before surgery to make sure that Timmy isn't having any trouble while sleeping. So this has been scheduled for Tuesday, Feb. 23rd. Even though Timmy's trach stoma is still open, it is not open enough that Timmy is able to pass any air through the stoma. So pray that everything goes well with the sleep study so that we are able to proceed with the surgery to close the trach stoma.
After all was said and done, we made it back home a little before 7:00pm.
I can't believe it, but Timmy does NOT have any doctors appointments in March. Lets not tell Timmy because if he knew this he would find someone to go see. I can't remember this EVER happening before. What we do we with all of the extra time we will have on our hands???
Thursday, February 11, 2010
Eye Surgery Today
Timmy had eye surgery today with Dr. Richard, so that Dr. Richard could get a better look in Timmy's eye socket to see exactly why we haven't been able to reinsert Timmy prosthetic eye.
Well of course this being Timmy. His body had created scar tissue in the eye socket. Why? Not sure being that when the prosthetic mold for his eye was made on Jan. 22nd Dr. Richard did absolutely nothing, but remove a conformer that was in his left eye and replace it with a fresh one until our visit with the occularist on Manday Jan. 25th.
Thankfully Dr. Richard was able to clean away the scar tissue, replace the eye and suture it shut with dissolvable surures, whic should dissolve within 2 weeks. But then again Mr. Timmy is also Mr. Hands. And he LOVES to self stimulate and rub his face/eyes. So we shall see just how long the sutures stay in place. Hopefully the full 2 weeks. This way Timmy;'s eye socket will have a chance to conform to the shape of his prosthetic eye and we won't have so much trouble reinserting the eye if it should happen to come out again.
Aside for a little bloody drainage. Timmy came through surgery well. And we were able to keep his blood glucose levels well managed. Of course if Timmy heard me say that, he would surely throw a wrench into the mix next time for sure! Praying there isn't a next time too soon into the future.
Well of course this being Timmy. His body had created scar tissue in the eye socket. Why? Not sure being that when the prosthetic mold for his eye was made on Jan. 22nd Dr. Richard did absolutely nothing, but remove a conformer that was in his left eye and replace it with a fresh one until our visit with the occularist on Manday Jan. 25th.
Thankfully Dr. Richard was able to clean away the scar tissue, replace the eye and suture it shut with dissolvable surures, whic should dissolve within 2 weeks. But then again Mr. Timmy is also Mr. Hands. And he LOVES to self stimulate and rub his face/eyes. So we shall see just how long the sutures stay in place. Hopefully the full 2 weeks. This way Timmy;'s eye socket will have a chance to conform to the shape of his prosthetic eye and we won't have so much trouble reinserting the eye if it should happen to come out again.
Aside for a little bloody drainage. Timmy came through surgery well. And we were able to keep his blood glucose levels well managed. Of course if Timmy heard me say that, he would surely throw a wrench into the mix next time for sure! Praying there isn't a next time too soon into the future.
Thursday, February 4, 2010
A Day Filled With Doctor Appointments
Today was a day filled with Doc appointments for Timmy. I guess I shouldn't really complain. If we took away the wait time in between each appointment the total time it took to see 3 different doctors was only 2 hours. Not bad for a hospital clinic.
Timmy's 1st appointment was with GI. Timmy weighs 36lbs and is 38in tall. We went over the upper GI test results that were preformed in Mid December. Of course the test showed that the Nissen was fully in tact. Then why are we seeing some minor reflux, especially when Timmy is up and being active? Or when I give him his nightly snack via his G-tube at night? Or why is Timmy able to burp so frequently? The only explaination the Doc had was that maybe Timmy needed to be vented more. Geez, the child gets vented every 2 hours! So I don't think that this is the underlying issue.
Timmy is currently taking 15mg of Prevacid 2x a day. The Doc suggested that we cut the dose to only 1x a day to see what happens. He felt that maybe the double dose of Prevacid may be masking some underlying cuase. Kinda makes sense to us. We are willing to try anything if it leads us to the problem so that we can come up with a solution to the problem. We are to call if we notice more frequent burping, reflux that is more than just a small "burp up" of food or if Timmy seems to be uncomfortable without the 2nd dose of Prevacid. Otherwise our next appointment is in a year.
Timmy's 2nd appointment was with urology. After 3+ years, I'm not sure if it was fate or our persistance in finding a doctor who was willing to circumcise Timmy and possibly descend his testicles which finally lead us to Dr. Ross. But anyway she is great. She is concerned about Timmy's health despite all of Timmy's underlying complex medical issues. She has Timmy's best interest at heart. She has a very good bedside manner. And she is very compassionate.
We discussed in further detail about her circumcising Timmy and during the same surgery descending his testicles. She feels that even though Timmy will not benefit from the fertiltiy benefit of having his testicles descended, (who knows what 15+ years into the future holds for Timmy) he will most definately benefit as far as a slighter chance of him developing testicular cancer, caompared to the higher risk of the cancer if his testicles weren't to be descended.
So as of now, Timmy has a pre-op visit scheduled on April 13th at 2pm with surgery to follow on April 14th. She has requested that Timmy be placed as her 1st surgery patient of the day. And we are all keeping an open mind as to whether this surgery will be done on an outpatient basis. She says if there is even the slightest issue that arises she will admit Timmy to the hospital for observation overnight. Awww, how sweet! Now if all doctors could be that concerned and caring about their patients, what a wonderful world this would be.
Luckily we were able to get Timmy in to see his orbital plastic surgeon on a walk in basis. We felt that being we couldn't get Timmy's eye back in that possibly there could be some scar tissue that had formed in his eye socket. The surgeon looked and from what he could tell this isn't the case.
Dr. Richard tried, but was also unsuccessful to rreinsert the eye. So the plan is for on Wed. Feb. 10th Dr. Richard will take Timmy to the OR and reinsert the eye under anesthesia. He then will suture the eyelid. So hopefully this will help to keep the eye in. The sutures will remain in place for a month or so. At which time we will have them removed. Hopefully by that time Timmy's eye socket will have had time to adapt to the prosthetic eye and have had a chance to grow larger. Making replacement of the prosthetic easier for when we have to replace it. Of course we will definately get that most challenging opportunity again soon, I'm 100% sure.
After our visit to the surgeon, I'm now convinced that Timmy is playing the sympathy card on us to get us to STOP and LEAVE him alone when we are trying to reinsert his prosthetic eye. At home he SCREAMS and CRIES, as if someone is chopping off his head with out any anesthesia. But when Dr. Richard tried to replace the eye, Timmy DID NOT scream or cry. He did tense up a bit and he became more vocal. BUT no screaming or crying. Dr. Richard used the exact same procedures to try to reinsert the eye as we do at home. He used a few numbing drops in the eye socket. He added some antibotic ointment and he lubricated the eye. All the while Timmy is sitting in Merry's lap (Timmy's Home Health Nurse) and she was restraining his arms/hands. But NO screaming or crying. Go figure!
Ok I will admit I'm proud of Timmy for not screaming and crying. He just showd us just how much of a big boy he can be when he needs to be.
Looking on the bright side of this whole situation. Boy are we lucky that we get to have a chance to deal with just one eye at a time. At least this eay we have a chance to trouble shoot any problems and become a pro at replacing only 1 prosthetic eye beore we have to take on the challenge of dealing with both eyes.
The next while at home that we have the pleasure of trying to replace Timmy's prosthetic eye, I hope that he will find it in his heart to grant us the same pleasure that he did Dr. Richard. And let us keep your sanity, nerves and our eardrums! We shall see. So check back for updates.
Timmy's 1st appointment was with GI. Timmy weighs 36lbs and is 38in tall. We went over the upper GI test results that were preformed in Mid December. Of course the test showed that the Nissen was fully in tact. Then why are we seeing some minor reflux, especially when Timmy is up and being active? Or when I give him his nightly snack via his G-tube at night? Or why is Timmy able to burp so frequently? The only explaination the Doc had was that maybe Timmy needed to be vented more. Geez, the child gets vented every 2 hours! So I don't think that this is the underlying issue.
Timmy is currently taking 15mg of Prevacid 2x a day. The Doc suggested that we cut the dose to only 1x a day to see what happens. He felt that maybe the double dose of Prevacid may be masking some underlying cuase. Kinda makes sense to us. We are willing to try anything if it leads us to the problem so that we can come up with a solution to the problem. We are to call if we notice more frequent burping, reflux that is more than just a small "burp up" of food or if Timmy seems to be uncomfortable without the 2nd dose of Prevacid. Otherwise our next appointment is in a year.
Timmy's 2nd appointment was with urology. After 3+ years, I'm not sure if it was fate or our persistance in finding a doctor who was willing to circumcise Timmy and possibly descend his testicles which finally lead us to Dr. Ross. But anyway she is great. She is concerned about Timmy's health despite all of Timmy's underlying complex medical issues. She has Timmy's best interest at heart. She has a very good bedside manner. And she is very compassionate.
We discussed in further detail about her circumcising Timmy and during the same surgery descending his testicles. She feels that even though Timmy will not benefit from the fertiltiy benefit of having his testicles descended, (who knows what 15+ years into the future holds for Timmy) he will most definately benefit as far as a slighter chance of him developing testicular cancer, caompared to the higher risk of the cancer if his testicles weren't to be descended.
So as of now, Timmy has a pre-op visit scheduled on April 13th at 2pm with surgery to follow on April 14th. She has requested that Timmy be placed as her 1st surgery patient of the day. And we are all keeping an open mind as to whether this surgery will be done on an outpatient basis. She says if there is even the slightest issue that arises she will admit Timmy to the hospital for observation overnight. Awww, how sweet! Now if all doctors could be that concerned and caring about their patients, what a wonderful world this would be.
Luckily we were able to get Timmy in to see his orbital plastic surgeon on a walk in basis. We felt that being we couldn't get Timmy's eye back in that possibly there could be some scar tissue that had formed in his eye socket. The surgeon looked and from what he could tell this isn't the case.
Dr. Richard tried, but was also unsuccessful to rreinsert the eye. So the plan is for on Wed. Feb. 10th Dr. Richard will take Timmy to the OR and reinsert the eye under anesthesia. He then will suture the eyelid. So hopefully this will help to keep the eye in. The sutures will remain in place for a month or so. At which time we will have them removed. Hopefully by that time Timmy's eye socket will have had time to adapt to the prosthetic eye and have had a chance to grow larger. Making replacement of the prosthetic easier for when we have to replace it. Of course we will definately get that most challenging opportunity again soon, I'm 100% sure.
After our visit to the surgeon, I'm now convinced that Timmy is playing the sympathy card on us to get us to STOP and LEAVE him alone when we are trying to reinsert his prosthetic eye. At home he SCREAMS and CRIES, as if someone is chopping off his head with out any anesthesia. But when Dr. Richard tried to replace the eye, Timmy DID NOT scream or cry. He did tense up a bit and he became more vocal. BUT no screaming or crying. Dr. Richard used the exact same procedures to try to reinsert the eye as we do at home. He used a few numbing drops in the eye socket. He added some antibotic ointment and he lubricated the eye. All the while Timmy is sitting in Merry's lap (Timmy's Home Health Nurse) and she was restraining his arms/hands. But NO screaming or crying. Go figure!
Ok I will admit I'm proud of Timmy for not screaming and crying. He just showd us just how much of a big boy he can be when he needs to be.
Looking on the bright side of this whole situation. Boy are we lucky that we get to have a chance to deal with just one eye at a time. At least this eay we have a chance to trouble shoot any problems and become a pro at replacing only 1 prosthetic eye beore we have to take on the challenge of dealing with both eyes.
The next while at home that we have the pleasure of trying to replace Timmy's prosthetic eye, I hope that he will find it in his heart to grant us the same pleasure that he did Dr. Richard. And let us keep your sanity, nerves and our eardrums! We shall see. So check back for updates.
Tuesday, January 26, 2010
Wink, Wink
Timmy went yesterday and had his very first fitting for his left prosthetic eye. We have been talking to Timmy about this very special day for quite a while. I (mom) wanted Timmy to have nice pretty green eyes. But every time I would speak to Timmy about possibly one day getting green eyes, he would protest. So one day I asked him what color of eyes he wanted? I started naming off colors. Brown? No response from Timmy. Green? A definate disapproval by his vocalizing his disagreement. Hazel? No response. Blue? Timmy started laughing hysterically. This his Timmy's way of telling us YES. So blue eyes it is.
You can't tell much about his new blue eye in this picture because the eyelids are still pretty swollen from Friday's surgery and Mr. Boyd from Carolina Eye Prosthetics Placing and Removing the eye to get the perfect fit. Timmy also may need surgery in the future to shorten the muscle in his left eye lig so that his eye can be more open.
This is the very first picture that we have of Timmy with such a broad smile. This picture itself speaks a 1,000 words!!!!!
Isn't he just the cutest here????
Friday, January 22, 2010
Persistance or Fate
Today Timmy was suppose to have a double surgical procedure. He was suppose to have eye surgery to remove the sutures and glue from his eyelids, which was helping to hold the conformers in place. Being Mr. Timmy's favorite pass time was poking the conformers out. And to replace the conformers with a larger size. The eye surgery went well. We have a surprise post coming early next week.
The second surgery was suppose to be for circumcision. This surgery didn't take place. Fate has FINALLY guided us to a Urologist whio is willing to help Timmy with his best interest at heart.
When Timmy was born, he had a micro-penis and his testicles are undescended. Shortly following his birth, Timmy started having frequent UTI's. At a little over a year of age Timmy's Nephrologist (kidney Doc) placed him on a daily dose of an antibotic to try to help prevent the reoccuring UTI's/ This daily dose worked for a short while. But as Timmy's body adjusted to the antibotic, it stopped doing its job. So we had to switch between 2 different antibotics every couple of months to try to prevent Timmy's body from becoming use to the drugs.
Shortly after Timmy turned 2 years, I was speaking with a mother who has a son, who had some of the same issues that Timmy was having. She suggested that we speak with Timmy's Endocrinologist about a monthly dose of Testerone to help Timmy's "Manhood" grow, which in turn "may" help in preventing the reoccuring UTI's. Timmy's Endocrinologist agreed to the monthly Testerone injections. Timmy received 4 monthly injections of Testerone, which did help his "Manhood" to grow. But the frequesn UTI's didn't go away.
We decided that being Timmy's "Manhood" was now a bit larger, a circumcision might be possible and solve the problem of the UTI's. So we went on a search for a Urologist, who would be willing to descend Timmy's testicles and to circumcise him.
We searched for 3 years with absolutely no success. Each Pediatric Urologist that we spoke with felt that a circumcision wouldn't solve the problem with the frequent UTI's. And even though there is a very slight risk of cancer if Timmy's testicles aren't descended, that the chances are sooo slim that doing the surgery was unnecessary. At the age of 4 years, when Timmy hadn't had a UTI for quite sometime the Urologist felt that it would be safe to take him off of the daily dose of his preventitive antibotic. The Urologist felt that Timmy's UTI's were something that he just needed to outgrow.
Late last summer Timmy started having UTI's once again. One maybe every few months. Nothing as frequent as they once were. In December we approached Timmy's Urologist once again and asked him to PLEASE consider preforming a circumcision. He Finally agreed to do the circumcision, but still felt that descending the testicles was unnecessary.
Persistance or Fate Finally came upon us. Timmy's Urologist was unavailable to preform the circumcision on surgery day, but his associate agreed.
When Sherry Ross came out from surgery and stated that she did not do the circumcision, Tears filled my eyes. I immediately felt like we had been let down once again. This is a procedure that Timmy desperately needs. Dr. Ross went on to explain that she didn't do the circumcision because upon examining Timmy first, she noticed that his testicles needed to be descended. And instead of putting him through surgery twice she felt that it best to wait and do both procedures at the same time. It took everything in my body to hold back my tears. I was so releived that we had finally found a Doctor who was willing to help, who was putting Timmy's health and best interest at heart and who didn't seem to even think twice about Timmy's multiple complex medical conditions. Dr. Ross gave us her business card and asked us to schedule a clinic appointment at our earliest convience so that we all could discuss Timmy's necessary surgery.
We have an appointment to meet with Dr. Ross on Feb. 4th. Hopefully Timmy can get this surgery sometime in early March or April.
The second surgery was suppose to be for circumcision. This surgery didn't take place. Fate has FINALLY guided us to a Urologist whio is willing to help Timmy with his best interest at heart.
When Timmy was born, he had a micro-penis and his testicles are undescended. Shortly following his birth, Timmy started having frequent UTI's. At a little over a year of age Timmy's Nephrologist (kidney Doc) placed him on a daily dose of an antibotic to try to help prevent the reoccuring UTI's/ This daily dose worked for a short while. But as Timmy's body adjusted to the antibotic, it stopped doing its job. So we had to switch between 2 different antibotics every couple of months to try to prevent Timmy's body from becoming use to the drugs.
Shortly after Timmy turned 2 years, I was speaking with a mother who has a son, who had some of the same issues that Timmy was having. She suggested that we speak with Timmy's Endocrinologist about a monthly dose of Testerone to help Timmy's "Manhood" grow, which in turn "may" help in preventing the reoccuring UTI's. Timmy's Endocrinologist agreed to the monthly Testerone injections. Timmy received 4 monthly injections of Testerone, which did help his "Manhood" to grow. But the frequesn UTI's didn't go away.
We decided that being Timmy's "Manhood" was now a bit larger, a circumcision might be possible and solve the problem of the UTI's. So we went on a search for a Urologist, who would be willing to descend Timmy's testicles and to circumcise him.
We searched for 3 years with absolutely no success. Each Pediatric Urologist that we spoke with felt that a circumcision wouldn't solve the problem with the frequent UTI's. And even though there is a very slight risk of cancer if Timmy's testicles aren't descended, that the chances are sooo slim that doing the surgery was unnecessary. At the age of 4 years, when Timmy hadn't had a UTI for quite sometime the Urologist felt that it would be safe to take him off of the daily dose of his preventitive antibotic. The Urologist felt that Timmy's UTI's were something that he just needed to outgrow.
Late last summer Timmy started having UTI's once again. One maybe every few months. Nothing as frequent as they once were. In December we approached Timmy's Urologist once again and asked him to PLEASE consider preforming a circumcision. He Finally agreed to do the circumcision, but still felt that descending the testicles was unnecessary.
Persistance or Fate Finally came upon us. Timmy's Urologist was unavailable to preform the circumcision on surgery day, but his associate agreed.
When Sherry Ross came out from surgery and stated that she did not do the circumcision, Tears filled my eyes. I immediately felt like we had been let down once again. This is a procedure that Timmy desperately needs. Dr. Ross went on to explain that she didn't do the circumcision because upon examining Timmy first, she noticed that his testicles needed to be descended. And instead of putting him through surgery twice she felt that it best to wait and do both procedures at the same time. It took everything in my body to hold back my tears. I was so releived that we had finally found a Doctor who was willing to help, who was putting Timmy's health and best interest at heart and who didn't seem to even think twice about Timmy's multiple complex medical conditions. Dr. Ross gave us her business card and asked us to schedule a clinic appointment at our earliest convience so that we all could discuss Timmy's necessary surgery.
We have an appointment to meet with Dr. Ross on Feb. 4th. Hopefully Timmy can get this surgery sometime in early March or April.
Monday, December 21, 2009
A Day Filled With Doc Visits
Today was a busy day filled with Doc visits for me and Timmy. I had a visit with my Cornea Specialists. Everything looks great. The Doc took me off of all of my glaucoma eye meds, steroid eye meds and 1 of my opthalmic antibotic eye medications. I now only have to take Vancomycin, which is an opthalmic maintance antibotic. I'm at a high risk for infection of the eye due to my Keratoprosthesis (artificial cornea and lens). I have a follow up appointment in January to check my eye pressure. If the eye pressure is high the Doc may have to reconsider putting me back on 1 of my glaucoma medications.
Timmy had an upper GI study with barium to check on his suspected reflux, due to a possible failure of his Nissen Fundoplacation. Over the past several months. we have seen Timmy spit up, he is able to burp, his ENT noticed some esophagus irriataion during one of Timmy's bronch surgeries and following meals Timmy tends to shove his fingers/hands soo far down his throat, as if he is trying to releive pain due to possible reflux. What do you think the study showed??? Absolutely Nothing Wrong! The radiologist even had Timmy swallow some of the barium while lying flat on his back. And still NOTHING! The Nissen is perfectly intact! The only explaination that the radiologist and GI Doc could give us is that If the pressure builds up to much in Timmy's stomach, it is possible for him to be able to burp and spit up. So now we sit and wait til Timmy's GI appointment in Feb. to see if there are other test that can be done to possibly get to the bottom of Timmy's GI problems. Because we aren't buying the explaination given us. Something is wrong somewhere, but where???
Timmy also had a urology visit. We discussed with the Urologist about having Timmy circumcised. When Timmy was alot younger he use to have reoccuring UTI's. He was put on a maintance antibotic to try to help prevent the reoccuring UTI's. At around age 2 Timmy's Endocrinologist gave him 4 months of testerone to help with his micro-"Winkie" (Just keeping things clean for any very young readers. Don't want any parents to start freaking out.). Timmy's "Winkie" is still small, but not as small as it once was. We felt that the reoccuring UTI's was due to Timmy's small "Winkie," but of course the Urologist wouldn't agree. Timmy has had 3-4 UTI's in 2009. So we are starting to see an unwanted pattern. We feel that being Timmy's foreskin is soo tight that we just aren't able to completely clean underneath it. Even though we do the best that we can and it appears to be clean. Of course the Urologist disagrees that the foreskin isn't too tight. Anyway by the end of the visit the Urologist agreed to try to schedule the circumcision in Jan. during Timmy's scheduled eye surgery. If this time isn't possible we will have to schedule a different surgery. Thank goodness this eye surgery isn't suppose to be so invasive and stressful. I can't imagine having both ends operated on at once!
Timmy had an upper GI study with barium to check on his suspected reflux, due to a possible failure of his Nissen Fundoplacation. Over the past several months. we have seen Timmy spit up, he is able to burp, his ENT noticed some esophagus irriataion during one of Timmy's bronch surgeries and following meals Timmy tends to shove his fingers/hands soo far down his throat, as if he is trying to releive pain due to possible reflux. What do you think the study showed??? Absolutely Nothing Wrong! The radiologist even had Timmy swallow some of the barium while lying flat on his back. And still NOTHING! The Nissen is perfectly intact! The only explaination that the radiologist and GI Doc could give us is that If the pressure builds up to much in Timmy's stomach, it is possible for him to be able to burp and spit up. So now we sit and wait til Timmy's GI appointment in Feb. to see if there are other test that can be done to possibly get to the bottom of Timmy's GI problems. Because we aren't buying the explaination given us. Something is wrong somewhere, but where???
Timmy also had a urology visit. We discussed with the Urologist about having Timmy circumcised. When Timmy was alot younger he use to have reoccuring UTI's. He was put on a maintance antibotic to try to help prevent the reoccuring UTI's. At around age 2 Timmy's Endocrinologist gave him 4 months of testerone to help with his micro-"Winkie" (Just keeping things clean for any very young readers. Don't want any parents to start freaking out.). Timmy's "Winkie" is still small, but not as small as it once was. We felt that the reoccuring UTI's was due to Timmy's small "Winkie," but of course the Urologist wouldn't agree. Timmy has had 3-4 UTI's in 2009. So we are starting to see an unwanted pattern. We feel that being Timmy's foreskin is soo tight that we just aren't able to completely clean underneath it. Even though we do the best that we can and it appears to be clean. Of course the Urologist disagrees that the foreskin isn't too tight. Anyway by the end of the visit the Urologist agreed to try to schedule the circumcision in Jan. during Timmy's scheduled eye surgery. If this time isn't possible we will have to schedule a different surgery. Thank goodness this eye surgery isn't suppose to be so invasive and stressful. I can't imagine having both ends operated on at once!
Sunday, November 8, 2009
Timmy's MRI Report
In December 2008, when we were at NIH, they sent Timmy's MRI to the Carter Center for review. Below is the finding from the Carter Center, that we just recently obtained from NIH. I don't know what any of this really means. Timmy has a Neurology appointment on Nov. 13th and at this time, I'm hoping that the Neurologist can explain some if not all of this to us. Maybe some of you can understand what is being described here.
CC Neuroradiology Report
Exam Type Exam Media Referral Source (CC)
MRI DICOM CD/DVD Other
Image Diagnosis
Other
Comments
Not HPE. Multiple anomalies including agenesis corpus callosum, hypoplastic pons, vermis (absent inferiorly), possible Dandy-Walker. Tectum dysplastic. Hypoplastic pituitary and hypothal.
Microcephalics. Asymmetric microophthalmia. Basal ganglia abnormal, globular (but not fused). Given eye, cortical malformation, post fossa anomalies, raises question of CMD/MEB spectrum.
Detailed Findings (For Internal Research Use Only )
Caudate Mesencephalon
0 (seperated) 0 (Normal)
Lentiform Thalmi
0 (separated) 0 (seperated)
Hemispheric Fusion Hemisph Fused Portions
Absent Not HPE, therefore
*Anterior Falx Present *Posterior Falx Present
Ant CC/Genu Present Ant. Body CC Present
Post Body CC Present Post CC/Splenium Present
- CC Comment -
Complete ACC
Cortical Malformation Optic Chiasm
Present Dysgenetic
Orbits Olfactory Bulb
Absent
Olfactory Sulci
Absent IHC-
Present w/comm - type 1
Dorsal Cyst
Absent VP Shunt
Absent
Myelination
Age Appropriate Vessels
0 (Normal)
Aquaduct
Patent
Ventricular System and Cyst Comments
Midline interhemispheric fissure vs cyst is enlarged. Thalami are separated by enlarged 3rd vent with posterior commissure connecting the two thalami. Asymmetric large temporal horns, R>L.
Stanford School of Medicine & Lucile Packard Children’s Hospital
Stanford, California, 94305-5235
Tel: (650) 723-6841. Email hpe@stanford.edu
CC Neuroradiology Report
Date of Exam Age at Exam (yr) Date of Review
7/14/2008 4.7 1/23/2009
Exam Type Exam Media Referral Source (CC)
MRI DICOM CD/DVD Other
Image Diagnosis
Other
Comments
Not HPE. Multiple anomalies including agenesis corpus callosum, hypoplastic pons, vermis (absent inferiorly), possible Dandy-Walker. Tectum dysplastic. Hypoplastic pituitary and hypothal.
Microcephalics. Asymmetric microophthalmia. Basal ganglia abnormal, globular (but not fused). Given eye, cortical malformation, post fossa anomalies, raises question of CMD/MEB spectrum.
Detailed Findings (For Internal Research Use Only )
Pituitary Hypothalamus
1 (partial) DysgeneticCaudate Mesencephalon
0 (seperated) 0 (Normal)
Lentiform Thalmi
0 (separated) 0 (seperated)
Hemispheric Fusion Hemisph Fused Portions
Absent Not HPE, therefore
*Anterior Falx Present *Posterior Falx Present
Ant CC/Genu Present Ant. Body CC Present
Post Body CC Present Post CC/Splenium Present
- CC Comment -
Complete ACC
Cortical Malformation Optic Chiasm
Present Dysgenetic
Orbits Olfactory Bulb
Absent
Olfactory Sulci
Absent IHC-
Present w/comm - type 1
Dorsal Cyst
Absent VP Shunt
Absent
Myelination
Age Appropriate Vessels
0 (Normal)
Aquaduct
Patent
Ventricular System and Cyst Comments
Midline interhemispheric fissure vs cyst is enlarged. Thalami are separated by enlarged 3rd vent with posterior commissure connecting the two thalami. Asymmetric large temporal horns, R>L.
Interpreted By:
Patrick Barnes, M.D., Professor of Radiology-Diagnostic Radiology
Jin Hahn, M.D., Professor of Neurology and PediatricsStanford School of Medicine & Lucile Packard Children’s Hospital
Stanford, California, 94305-5235
Tel: (650) 723-6841. Email hpe@stanford.edu
Thursday, November 5, 2009
Pulmonology Visit
Timmy had a Pulmonology visit today at UNC with Dr. Jessica Pittman. She was very pleased with just how well Timmy is doing, since the removal of his trach. Dr. Pittman took Timmy off of his Pulmocort nebulizer treatments. YAY!! No more daily breathing treatments. We are still able to give Xopenex and saline nebs as needed. She put Timmy on an antibotic "just because" Timmy has had some yellowish to tannish secretions coming out of his trach stoma. he antibotic is just a precaution, in case some kind of bug is trying to rear its ugly head. This way we can possibly stop it before it hits Timmy too hard. We discussed Timmy's sleep study results from the test in August. Timmy had a couple of centeral apnea episodes and a desaturation of less than 90% for a minute. Dr. Pittman doesn't feel that this is a big issue at this time, being that we aren't seeing any problems with sleep or breathing at home during the night. She looked into Timmy's ear (left). She removed the TONS of ear wax that had built up. And was able to then confirm that YES Timmy's left ear tube had most definately come out the night before. Soooo, we have a call into Dr. Z (ENT) to see what if anything he feels should be done. All in all, this was a great visit. Timmy measured 37+ inches tall and was roughly 36lbs. Timmy's next Pulmonology visit is in 6 months, unless he should get sick and need to be seen sooner.
Wednesday, October 28, 2009
ENT Visit Today
Timmy had an ENT (Ear, Nose, Throat) visit with Dr. Z today. Dr. Z checked Timmy's ears. Ear tubes are still in place and no signs of any ear infections. Yay! We discussed Timmy's last sleep study results. Timmy has a couple of episodes of centeral apnea. BUT Dr. Z feels that this isn't a concern at this time, being that Timmy only dropped his O2 saturation level once (90) for only 1 minute. Nothing else of concern was noted on the sleep study. We discussed Timmy's PRN oxygen orders. Dr. Z doesn't want Timmy's O2 saturation levels to drop below 92. If they maintain below 92 for a period of time without rebounding, he wants us to call him or the Dr. on call immediately.
It has now been THREE (3) months since Timmy had his trach removed. WOW, I can't believe it has been that long already. Time sure has flown by. What better way to memorialize this event, but a picture of Timmy with the Doctor who made this whole event possible. (Sorry the picture quality isn't that good. All I had with me was my cell phone camera. I have asked Santa for a Digital camera for Christmas.)
After scoping Timmy to evaluate his airway, Dr. Z had faith that Timmy "could" possibly be successfully decannulated. And Dr. Z believed in us, as Timmy's parents, he felt that we knew Timmy better than anyone. And from the signs that Timmy was showing us, he definately was ready to have his trach removed. Thank You Dr. Z for being willing to give Timmy and us this wonderful opportunity to shine and make our everyday lives with Timmy MUCH easier!
Timmy also received his flu shots. Yes, both, the seasonal and the H1N1. It must have been meant for Timmy to have received the H1N1 injection. I asked Dr. Z his opinion about Timmy getting the flu shots. And Dr. Z said "Yes, Timmy should most definately get them. BUT we are completely out of the H1N1 vaccine. The last dose was given early this morning" We agreed to just go ahead and have Timmy receive the seasonal flu shot. At least, this way he would be half protected. When we met with the Nurse in Pulmonology (Amber) she informed us that they "just" had received a shippment of H1N1 vaccines. Boy talk about Luck and Timing! Sooo, we agreed to have them give Timmy the H1N1 vaccine as well. Floyd spoke with Timmy's Endocrinologist later in the evening and Dr. Ali (Endocrinologist) stated that the hospital had ONLY received 30 doses of the H1N1 vaccine. And Timmy was the 1st person to have received a dose.
So now we wait and see, just how affective these vaccines will be for Timmy. All of the talk on the news about young children and adults dying from contracting the H1N1 virus scares the Beegeebies out of me! So hopefully, the pain of these 2 injections will protect him throughout this entire flu season.
After scoping Timmy to evaluate his airway, Dr. Z had faith that Timmy "could" possibly be successfully decannulated. And Dr. Z believed in us, as Timmy's parents, he felt that we knew Timmy better than anyone. And from the signs that Timmy was showing us, he definately was ready to have his trach removed. Thank You Dr. Z for being willing to give Timmy and us this wonderful opportunity to shine and make our everyday lives with Timmy MUCH easier!
Timmy also received his flu shots. Yes, both, the seasonal and the H1N1. It must have been meant for Timmy to have received the H1N1 injection. I asked Dr. Z his opinion about Timmy getting the flu shots. And Dr. Z said "Yes, Timmy should most definately get them. BUT we are completely out of the H1N1 vaccine. The last dose was given early this morning" We agreed to just go ahead and have Timmy receive the seasonal flu shot. At least, this way he would be half protected. When we met with the Nurse in Pulmonology (Amber) she informed us that they "just" had received a shippment of H1N1 vaccines. Boy talk about Luck and Timing! Sooo, we agreed to have them give Timmy the H1N1 vaccine as well. Floyd spoke with Timmy's Endocrinologist later in the evening and Dr. Ali (Endocrinologist) stated that the hospital had ONLY received 30 doses of the H1N1 vaccine. And Timmy was the 1st person to have received a dose.
So now we wait and see, just how affective these vaccines will be for Timmy. All of the talk on the news about young children and adults dying from contracting the H1N1 virus scares the Beegeebies out of me! So hopefully, the pain of these 2 injections will protect him throughout this entire flu season.
Tuesday, August 4, 2009
The One Zillion Dollar Boy
In the 1970's we had the Six Million Dollar Man and the Bionic Woman. Almost 4 decades later we have the Incredible Miracle Zillion Dollar Boy! Isn't he cute???
It has been 2 weeks since Timmy had his trach removed. He is doing TERRIFIC!!!!! He had a decannulation follow up appointment on July 29th, at which time a sleep study was scheduled for Monday Aug. 3rd. Yeah, we were surprised and impressed that they were able to get the sleep study scheduled so fast.
According to the paperwork that we were given for the sleep lab, we were suppose to arrive by 6:30PM. We called and requested a later arrival time, because Timmy doesn't typically go to bed until 9:00PM. Big mistake! And as the saying goes, you learn from your mistakes.....
We arrived at UNC Hospital at a little past 8:00PM. It took Timmy's sleep tech 1 hour BEFORE she came in to hook him up to all of the necessary wires for the sleep study. It takes about an hour to hook someone up to all of the wires and make sure everything is hooked up and working properly. So of course, Timmy fell asleep. So an hour of study time was lost.
Dad asked how Timmy did, but of course the tech "can't" and/or wouldn't say anything except that they were able to get 5-6 hours of study time. DUH! At least 6 hours of study time, whether the patient sleeps or just lays awake is needed BEFORE insurance will pay.
Timmy has an appointment on Aug. 19th with his ENT (Dr. Zdanski) to go over the results of the sleep study. Once the sleep study is scored, it is passed on to someone in Pulmonology for review. So hopefully Pulmonology will have time to have reviewed the study before our visit.
My main concern is that Timmy may be having some apnea episodes. He doesn't drop his oxygen saturations, but if he is sleeping on his back, he does snore. In my opinion, when Timmy is placed on his back to sleep his sleep is restless, compared to that if he is placed on his side, which in my opinion is a much more peaceful sleep. Even though Timmy is hooked up to a pulse/oximeter monitor at night while he sleeps, I find myself going in to check on him several time a night. Once we get the results to the sleep study, IF the study shows that everything is ok, I'll be able to relax and get some much needed rest myself. But until then I'll worry and keep my nightly vigil. Isn't that what a mom is suppose to do?
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