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Hey Everyone!!!
I have never needed your help more then we do now. As I had previously mentioned, Stanley has finally gotten his appointment to see a much sought after specialist. The appointment is out of state and his insurance will not cover it. I know it is going to cost some serious bucks and put us in a horrendous place again, but I have to take him. Waiting any longer is not an option.
He isn't gaining enough weight and every time he eats more the a small bowl he throw it up. The initial consult is not far off and I will be traveling quite a distance to take him. Bottom line is, without help... I don't know if we can do it. We have exhausted all options. I don't know what to do. I am feeling very helpless and unsure of how to make this all work.
I do know that it's about time we get this constant vomiting under control and regain some sort of normalcy. He is the sweetest little man and I can't wait for him to be free of this ailment.
Thank you again for the constant correspondence, the prayers and all the wishes you have sent our way. We are blessed to know you all.
XO The Macs <3
I have never needed your help more then we do now. As I had previously mentioned, Stanley has finally gotten his appointment to see a much sought after specialist. The appointment is out of state and his insurance will not cover it. I know it is going to cost some serious bucks and put us in a horrendous place again, but I have to take him. Waiting any longer is not an option.
He isn't gaining enough weight and every time he eats more the a small bowl he throw it up. The initial consult is not far off and I will be traveling quite a distance to take him. Bottom line is, without help... I don't know if we can do it. We have exhausted all options. I don't know what to do. I am feeling very helpless and unsure of how to make this all work.
I do know that it's about time we get this constant vomiting under control and regain some sort of normalcy. He is the sweetest little man and I can't wait for him to be free of this ailment.
Thank you again for the constant correspondence, the prayers and all the wishes you have sent our way. We are blessed to know you all.
XO The Macs <3
From Casey August 11, 2010
Hey there everyone!!
Thank you so much for all the support you have given over the past few weeks.
Stanley has had a good run. He has been holding down 90 percent of his food, and is trying to stand up on his own. However, I know the calm before the storm and this could very well be one of them.
Right now we are trying to get Stanley in with a "miracle gastro" doctor in MA. Problem is we are still uninsured out of state. I told them to cut off my arm as collateral, let's just get him with the right docs. We are going to use some of the donated funds for the trip to MA coming up in November.
Thank you for all the emails and prayers. This summer has been up and down, but currently we are in an upswing and hope it continues.
Much Love....The Macs XO
Hey there everyone!!
Thank you so much for all the support you have given over the past few weeks.
Stanley has had a good run. He has been holding down 90 percent of his food, and is trying to stand up on his own. However, I know the calm before the storm and this could very well be one of them.
Right now we are trying to get Stanley in with a "miracle gastro" doctor in MA. Problem is we are still uninsured out of state. I told them to cut off my arm as collateral, let's just get him with the right docs. We are going to use some of the donated funds for the trip to MA coming up in November.
Thank you for all the emails and prayers. This summer has been up and down, but currently we are in an upswing and hope it continues.
Much Love....The Macs XO
From Casey July 15, 2010
Stan is going back into the hospital today. The medicine he is on isn't taking and they need to give his "tummy a rest".
This has been one of the worst weeks he has ever had. We are unsure what the next step is but hopefully he will start feeling better so we can make some long term choices for his healthcare and hopefully state insurance can kick in.
Thank you for all your help.
Casey
Stan is going back into the hospital today. The medicine he is on isn't taking and they need to give his "tummy a rest".
This has been one of the worst weeks he has ever had. We are unsure what the next step is but hopefully he will start feeling better so we can make some long term choices for his healthcare and hopefully state insurance can kick in.
Thank you for all your help.
Casey
From Casey July 11, 2010
Hey everyone... So after several days of vomiting, we ended up taking Stanley to the ER to be hydrated. He is home now and resting and we are just completely exhausted.
They are unsure as to what is causing all the vomiting. We currently have no insurance as we are waiting for a pay stub from Dave's new job to apply for NJ Kid Care. For the time being I am keeping a constant eye on him and trying to keep him as comfortable as possible. Thank you for all the recent support. Without it, we would be in serious trouble.
Much Love,
Casey
Hey everyone... So after several days of vomiting, we ended up taking Stanley to the ER to be hydrated. He is home now and resting and we are just completely exhausted.
They are unsure as to what is causing all the vomiting. We currently have no insurance as we are waiting for a pay stub from Dave's new job to apply for NJ Kid Care. For the time being I am keeping a constant eye on him and trying to keep him as comfortable as possible. Thank you for all the recent support. Without it, we would be in serious trouble.
Much Love,
Casey
From Casey June 14, 2010
Today we are headed to take Stan in to the doctor to have his Esophagus checked for damage. We hope everything will turn out okay and no other steps will need to be taken on this issue. After speaking with the people at the NJ FamilyCare we are pleased to learn they will insure both kids reasonably. We were warned that Stan's medically needed formula will not be covered in their plan. This will be a big issue and where we need help the most. At 40 dollars a can, it gets pricey but he is ordered to remain on it until his weight is up to par.
We have been overwhelmed by all the help you have given. I think I have finally caught up to all emails and you even reading this means the world to us. We have three more appointments in Philly and Princeton coming up. We will keep you updated!!!
XO
The Mac's ♥
Today we are headed to take Stan in to the doctor to have his Esophagus checked for damage. We hope everything will turn out okay and no other steps will need to be taken on this issue. After speaking with the people at the NJ FamilyCare we are pleased to learn they will insure both kids reasonably. We were warned that Stan's medically needed formula will not be covered in their plan. This will be a big issue and where we need help the most. At 40 dollars a can, it gets pricey but he is ordered to remain on it until his weight is up to par.
We have been overwhelmed by all the help you have given. I think I have finally caught up to all emails and you even reading this means the world to us. We have three more appointments in Philly and Princeton coming up. We will keep you updated!!!
XO
The Mac's ♥
From Casey May 18, 2010
| Dear Stanley, On your first birthday I want to reflect on all the hardships you have overcome in just one year. I want to tell you that the scar on your belly will never define you. You are in just a mere 365 days, the biggest fighter I have ever known. When we first saw you get sick, we didn't think much of it. I actually recall saying to your daddy, "It's typical baby stuff". But, as the days rolled on and it became increasingly clear that it was not even in the realm of normal, I also felt sick. I felt everyday that if I admitted you weren't doing well to the world that suddenly you would be labeled a sick baby. I didn't want to hear those words. That awful June day when I had to walk you up to get your surgery, you were limp in my arms and I just sobbed as I handed you over to the doctors. I remember walking down to the waiting room and getting lost. So I found a corner and slumped down against it, hands in my palms, crying till there were little pools of tears on the tile. I thought about anything I could have done wrong to make this your fate. When I went to get you in the recovery room, you woke up pretty startled. But your eyes, were so blue..... and you were clutching my finger....... and it still breaks me up..... You were so beautiful. All the beeps of the machines and the wires coming out of your gown were suddenly invisible. Now, after countless hospital trips and hundreds of new treatments, I just want to tell you that you are the one who has taught me how to overcome fear. I will forever be in your debt for this as I feel like my life has been nothing but better cause I can now take on anything. I can talk to anyone and I can FIGHT. You are so handsome and so sweet. I feel like I have known you forever. I can't wait to get you all better. I can't wait to not have to carry towels around. I can't wait to see you run outside with your sister. I want you to know that you can do anything, you can be anything.... the world is yours. People will be mean and people will doubt you.... But not me. I know you like no one else. I know that this is just the beginning, kiddo. It's all up from here. Happy Birthday Stanny Mac. Thank you so much for making me believe...... -Mommy |
From Casey & Dave McDonald March 31, 2010
Hello!
I have been dying to take a few minutes to be able to sit and write you all a note about all the things going on with Stan and all the help we have graciously received.
Stan's condition hasn't exactly been easy to diagnose, as some of you know his chronic vomiting and inability to sufficiently gain weight has been troubling. He has been admitted to several hospitals.... several times. Still, no exact diagnosis. We are constantly told he will "grow out of it", even though his pyloris is still too thick.
His weight gain has been the big issue. He has a nice, big ol head... so its hard to notice that his body is so tiny. The funds that have been donated thus far have gone to paying off the big bill that one doctor had sent to one of those devil-like collection agencies that call you every hour and drive you nuts AND his weekly medicine and specialized formula.... which is rather pricey.
We are also taking him to a nutritionist whom is just a TON of money... but promises me we will have him on the fast track to fat baby in no time.
I really also wanted to tell you, the outpouring of letters and advice have been intense. I am honestly blessed to have all of you in our lives. The donations were amazing. I assure you, the McDonald clan is paying it forward every chance we can.
Thank you x1000000. Without your help, I don't know what we would have done.
Much Love, The Mac's
Hello!
I have been dying to take a few minutes to be able to sit and write you all a note about all the things going on with Stan and all the help we have graciously received.
Stan's condition hasn't exactly been easy to diagnose, as some of you know his chronic vomiting and inability to sufficiently gain weight has been troubling. He has been admitted to several hospitals.... several times. Still, no exact diagnosis. We are constantly told he will "grow out of it", even though his pyloris is still too thick.
His weight gain has been the big issue. He has a nice, big ol head... so its hard to notice that his body is so tiny. The funds that have been donated thus far have gone to paying off the big bill that one doctor had sent to one of those devil-like collection agencies that call you every hour and drive you nuts AND his weekly medicine and specialized formula.... which is rather pricey.
We are also taking him to a nutritionist whom is just a TON of money... but promises me we will have him on the fast track to fat baby in no time.
I really also wanted to tell you, the outpouring of letters and advice have been intense. I am honestly blessed to have all of you in our lives. The donations were amazing. I assure you, the McDonald clan is paying it forward every chance we can.
Thank you x1000000. Without your help, I don't know what we would have done.
Much Love, The Mac's
From Casey McDonald February 20, 2010
Well, this week Stan was back to being "under the weather" he had a local doc appointment where we learned his weight gain has leveled off. He is only in the 20th percentile for his age. Not terrible yet. But they are concerned. I am meeting with a nutritionist to see if we can start changing his diet around.
He's still a really happy little guy and stronger then I will ever be.
With the donations we paid off a few of the specialists who weren't covered by our insurance AND even paid off a bill from Quest Labs that had gone to collections for infant blood withdrawal.
We are so relieved to finally start being able to finally see some light at the end of the tunnel. We have so many amazing friends and we are just so very humble.
Thank you so much for everything.
Davey, Jules and Stanny Mac thank you too!
xo
Casey
Well, this week Stan was back to being "under the weather" he had a local doc appointment where we learned his weight gain has leveled off. He is only in the 20th percentile for his age. Not terrible yet. But they are concerned. I am meeting with a nutritionist to see if we can start changing his diet around.
He's still a really happy little guy and stronger then I will ever be.
With the donations we paid off a few of the specialists who weren't covered by our insurance AND even paid off a bill from Quest Labs that had gone to collections for infant blood withdrawal.
We are so relieved to finally start being able to finally see some light at the end of the tunnel. We have so many amazing friends and we are just so very humble.
Thank you so much for everything.
Davey, Jules and Stanny Mac thank you too!
xo
Casey
From Casey McDonald February 17, 2010
Again, we just appreciate everything. Stan has had a rough two days. He'll be in the doctors today and hopefully his weight hasn't gone down at all. fingers crossed.
We got our first CHOP bill and it was 850 bucks just walking in the door. I made some calls to their payments department and might have to go down there to see if we qualify for any assistance... I would imagine we do.
The tests bill should be here shortly and that's when we will more then likely lose our minds.
Time will tell.
Much love and again, thank you for everything.
XOXOXO
C
Again, we just appreciate everything. Stan has had a rough two days. He'll be in the doctors today and hopefully his weight hasn't gone down at all. fingers crossed.
We got our first CHOP bill and it was 850 bucks just walking in the door. I made some calls to their payments department and might have to go down there to see if we qualify for any assistance... I would imagine we do.
The tests bill should be here shortly and that's when we will more then likely lose our minds.
Time will tell.
Much love and again, thank you for everything.
XOXOXO
C
February 3, 2010
Casey Elan McDonald Stan can't hold anything down. I know this sounds drastic... but, the more sick he gets the less I can effin deal. I just believe less and less in doctors. Why can't they diagnose him? I called CHOP (Children's Hospital of Philadelphia) for my follow up and they scheduled me for APRIL 7TH! Are you kidding me? APRIL? They don't care about my son. They care ...about the 48 thousand dollars I owe them. So depressed.
Casey Elan McDonald Stan can't hold anything down. I know this sounds drastic... but, the more sick he gets the less I can effin deal. I just believe less and less in doctors. Why can't they diagnose him? I called CHOP (Children's Hospital of Philadelphia) for my follow up and they scheduled me for APRIL 7TH! Are you kidding me? APRIL? They don't care about my son. They care ...about the 48 thousand dollars I owe them. So depressed.
From Casey McDonald January 27, 2010
Again, thank you.
Stanley has accumulated many bills because of the numerous uncovered ER visits and copays.
His Pyloric Stenosis Surgery has set us back a few thousand already out of pocket.... that's with surgery. Couple in the driving back and forth to doctors visits, sitters and copays. It has really racked up quick.
He is currently on many different medications to prevent his constant vomiting. The last resort is a surgery to open up his pyloris further, we are trying to avoid this as it will set him back developmentally quite a bit. I can assure you, every red cent will go to paying the minimums on all these bills to keep us afloat.
You are so kind for doing this. Words cannot express.
Below is the wiki info on Pyloric Stenosis
Again, thank you.
Stanley has accumulated many bills because of the numerous uncovered ER visits and copays.
His Pyloric Stenosis Surgery has set us back a few thousand already out of pocket.... that's with surgery. Couple in the driving back and forth to doctors visits, sitters and copays. It has really racked up quick.
He is currently on many different medications to prevent his constant vomiting. The last resort is a surgery to open up his pyloris further, we are trying to avoid this as it will set him back developmentally quite a bit. I can assure you, every red cent will go to paying the minimums on all these bills to keep us afloat.
You are so kind for doing this. Words cannot express.
Below is the wiki info on Pyloric Stenosis
Pyloric stenosis (or infantile hypertrophic pyloric stenosis) is a condition that causes severe vomiting in the first few months of life. There is narrowing (stenosis) of the opening from the stomach to the intestines, due to enlargement (hypertrophy) of the muscle surrounding this opening (the pylorus, meaning "gate"), which spasms when the stomach empties. It is uncertain whether there is a real congenital narrowing or whether there is a functional hypertrophy of the muscle which develops in the first few weeks of life.
Males are more commonly affected than females, with firstborn males affected about four times as often, and there is a genetic predisposition for the disease.[1] It is commonly associated with people of Jewish ancestry, and has multifactorial inheritance patterns.[2] Pyloric stenosis is more common in whites than Hispanics, African Americans, or Asians. The incidence is 2.4 per 1000 live births in whites, 1.8 in Hispanics, 0.7 in African Americans, and 0.6 in Asians. It is also less common amongst children of mixed race parents.[3] Caucasian babies with blood type B or O are more likely than other types to be affected.[1]
Pyloric stenosis also occurs in adults where the cause is usually a narrowed pylorus due to scarring from chronic peptic ulceration. This is a completely different condition from the infantile form.
Symptoms
Babies with this condition usually present any time in the first weeks to months of life with progressively worsening vomiting. The vomiting is often described as non-bile stained ("non bilious") and "projectile vomiting", because it is more forceful than the usual spittiness (gastroesophageal reflux) seen at this age. Some infants present with poor feeding and weight loss, but others demonstrate normal weight gain. Dehydration also can occur causing the baby to cry without having tears, and having less wet or dirty nappies such as going hours or a couple days without having anything.[4]. Constant hunger, belching, and colic are other possible signs as the baby is not able to eat properly.
Diagnosis
Diagnosis is via a careful history and physical examination, often supplemented by radiographic studies. There should be suspicion for pyloric stenosis in any young infant with severe vomiting. On exam, palpation of the abdomen may reveal a mass in the epigastrium. This mass, which consists of the enlarged pylorus, is referred to as the 'olive,' and is sometimes evident after the infant is given formula to drink. It is an elusive diagnostic skill requiring much patience and experience. There are often palpable (or even visible) peristaltic waves due to the stomach trying to force its contents past the narrowed pyloric outlet.
At this point, most cases of pyloric stenosis are diagnosed/confirmed with ultrasound, if available, showing the thickened pylorus. Although somewhat less useful, an upper GI series (x-rays taken after the baby drinks a special contrast agent) can be diagnostic by showing the narrowed pyloric outlet filled with a thin stream of contrast material; a "string sign" or the "railroad track sign". For either type of study, there are specific measurement criteria used to identify the abnormal results. Plain x-rays of the abdomen are not useful, except when needed to rule out other problems.
Blood tests will reveal hypokalemic, hypochloremic metabolic alkalosis due to loss of gastric acid (which contain hydrochloric acid and potassium) via persistent vomiting; these findings can be seen with severe vomiting from any cause. The potassium is decreased further by the body's release of aldosterone, in an attempt to compensate for the hypovolaemia due to the severe vomiting.
Pathophysiology
The gastric outlet obstruction due to the hypertrophic pylorus impairs emptying of gastric contents into the duodenum. As a consequence, all ingested food and gastric secretions can only exit via vomiting, which can be of a projectile nature. The vomited material does not contain bile because the pyloric obstruction prevents entry of duodenal contents (containing bile) into the stomach.
This results in loss of gastric acid (hydrochloric acid). The chloride loss results in hypochloremia which impairs the kidney's ability to excrete bicarbonate. This is the significant factor that prevents correction of the alkalosis.[5]
A secondary hyperaldosteronism develops due to the hypovolemia. The high aldosterone levels causes the kidneys to:
Treatment
Infantile pyloric stenosis is typically managed with surgery. It is important to understand that the danger of pyloric stenosis comes from the dehydration and electrolyte disturbance rather than the underlying problem itself. Therefore, the baby must be initially stabilized by correcting the dehydration and hypochloremic alkalosis with IV fluids. This can usually be accomplished in about 24-48 hours.
Very few cases are mild enough to be treated medically. The definitive treatment of pyloric stenosis is with surgical pyloromyotomy known as Ramstedt's procedure (dividing the muscle of the pylorus to open up the gastric outlet). This is a relatively straightforward surgery that can possibly be done through a single incision (usually 3-4 cm long) or laparoscopically (through several tiny incisions), depending on the surgeon's experience and preference. [6]
Today a tiny circular incision around the navel is most commonly performed. This will leave minimal scar tissue. The vertical incision, pictured and listed above, is no longer usually required. Though many incisions have been horizontal in the past years.
Once the stomach can empty into the duodenum, feeding can commence. Some vomiting may be expected during the first days after surgery as the gastro-intestinal tract settles. Very occasionally the myotomy [7](muscle division) was incomplete and projectile vomiting continues, requiring repeat surgery. But the condition generally has no long term side-effects or impact on the child's future.
Males are more commonly affected than females, with firstborn males affected about four times as often, and there is a genetic predisposition for the disease.[1] It is commonly associated with people of Jewish ancestry, and has multifactorial inheritance patterns.[2] Pyloric stenosis is more common in whites than Hispanics, African Americans, or Asians. The incidence is 2.4 per 1000 live births in whites, 1.8 in Hispanics, 0.7 in African Americans, and 0.6 in Asians. It is also less common amongst children of mixed race parents.[3] Caucasian babies with blood type B or O are more likely than other types to be affected.[1]
Pyloric stenosis also occurs in adults where the cause is usually a narrowed pylorus due to scarring from chronic peptic ulceration. This is a completely different condition from the infantile form.
Symptoms
Babies with this condition usually present any time in the first weeks to months of life with progressively worsening vomiting. The vomiting is often described as non-bile stained ("non bilious") and "projectile vomiting", because it is more forceful than the usual spittiness (gastroesophageal reflux) seen at this age. Some infants present with poor feeding and weight loss, but others demonstrate normal weight gain. Dehydration also can occur causing the baby to cry without having tears, and having less wet or dirty nappies such as going hours or a couple days without having anything.[4]. Constant hunger, belching, and colic are other possible signs as the baby is not able to eat properly.
Diagnosis
Diagnosis is via a careful history and physical examination, often supplemented by radiographic studies. There should be suspicion for pyloric stenosis in any young infant with severe vomiting. On exam, palpation of the abdomen may reveal a mass in the epigastrium. This mass, which consists of the enlarged pylorus, is referred to as the 'olive,' and is sometimes evident after the infant is given formula to drink. It is an elusive diagnostic skill requiring much patience and experience. There are often palpable (or even visible) peristaltic waves due to the stomach trying to force its contents past the narrowed pyloric outlet.
At this point, most cases of pyloric stenosis are diagnosed/confirmed with ultrasound, if available, showing the thickened pylorus. Although somewhat less useful, an upper GI series (x-rays taken after the baby drinks a special contrast agent) can be diagnostic by showing the narrowed pyloric outlet filled with a thin stream of contrast material; a "string sign" or the "railroad track sign". For either type of study, there are specific measurement criteria used to identify the abnormal results. Plain x-rays of the abdomen are not useful, except when needed to rule out other problems.
Blood tests will reveal hypokalemic, hypochloremic metabolic alkalosis due to loss of gastric acid (which contain hydrochloric acid and potassium) via persistent vomiting; these findings can be seen with severe vomiting from any cause. The potassium is decreased further by the body's release of aldosterone, in an attempt to compensate for the hypovolaemia due to the severe vomiting.
Pathophysiology
The gastric outlet obstruction due to the hypertrophic pylorus impairs emptying of gastric contents into the duodenum. As a consequence, all ingested food and gastric secretions can only exit via vomiting, which can be of a projectile nature. The vomited material does not contain bile because the pyloric obstruction prevents entry of duodenal contents (containing bile) into the stomach.
This results in loss of gastric acid (hydrochloric acid). The chloride loss results in hypochloremia which impairs the kidney's ability to excrete bicarbonate. This is the significant factor that prevents correction of the alkalosis.[5]
A secondary hyperaldosteronism develops due to the hypovolemia. The high aldosterone levels causes the kidneys to:
- avidly retain Na+ (to correct the intravascular volume depletion)
- excrete increased amounts of K+ into the urine (resulting in hypokalaemia).
Treatment
Infantile pyloric stenosis is typically managed with surgery. It is important to understand that the danger of pyloric stenosis comes from the dehydration and electrolyte disturbance rather than the underlying problem itself. Therefore, the baby must be initially stabilized by correcting the dehydration and hypochloremic alkalosis with IV fluids. This can usually be accomplished in about 24-48 hours.
Very few cases are mild enough to be treated medically. The definitive treatment of pyloric stenosis is with surgical pyloromyotomy known as Ramstedt's procedure (dividing the muscle of the pylorus to open up the gastric outlet). This is a relatively straightforward surgery that can possibly be done through a single incision (usually 3-4 cm long) or laparoscopically (through several tiny incisions), depending on the surgeon's experience and preference. [6]
Today a tiny circular incision around the navel is most commonly performed. This will leave minimal scar tissue. The vertical incision, pictured and listed above, is no longer usually required. Though many incisions have been horizontal in the past years.
Once the stomach can empty into the duodenum, feeding can commence. Some vomiting may be expected during the first days after surgery as the gastro-intestinal tract settles. Very occasionally the myotomy [7](muscle division) was incomplete and projectile vomiting continues, requiring repeat surgery. But the condition generally has no long term side-effects or impact on the child's future.