RSV: Symptoms and prevention

RSV:
 Respiratory syncytial virus (RSV) is a very common virus that leads to mild, Respiratory syncytial virus (RSV)cold-like symptoms in adults and older healthy children. It can be more serious in young babies, especially to those in certain high-risk groups.

Children or babies with Congenital Diaphragmatic Hernia, Chronic Lung Disease and Severe Asthma are at high risk for RSV.

RSV is the most common germ that causes lung and airway infections in infants and young children.

Most infants have had this infection by age 2. Outbreaks of RSV infections most often begin in the fall and run into the spring.
The infection can occur in people of all ages. The virus spreads through tiny droplets that go into the air when a sick person blows their nose, coughs, or sneezes.
You can catch RSV if:

• A person with RSV sneezes, coughs, or blows their nose near you
• You touch, kiss, or shake hands with someone who is infected by the virus
• You touch your nose, eyes, or mouth after you have touched something contamined by the virus, such as a toy or doorknob.

RSV often spreads very rapidly in crowded households and day care centers. The virus can live for a half an hour or more on hands. The virus can also live for up to 5 hours on countertops and for several hours on used tissues.
The following increase the risk for RSV:

• Attending day care
• Being near tobacco smoke
• Having school-aged brothers or sisters
• Living in crowded conditions

Symptoms vary and differ with age. They usually appear 4 - 6 days after coming in contact with the virus.
Older children usually have only mild, cold-like symptoms, such as cough, stuffy nose, or low-grade fever.
Infants under age 1 may have more severe symptoms and often have the most trouble breathing

In general, RSV symptoms include:

• Bluish skin color due to a lack of oxygen (cyanosis)
• Breathing difficulty or labored breathing
• Cough
• Croupy cough (often described as a "seal bark" cough)
• Fever
• Nasal flaring
• Rapid breathing (tachypnea)
• Shortness of breath
• Stuffy nose
• Wheezing

Many hospitals and clinics can rapidly test for RSV using a sample of fluid taken from the nose with a cotton swab. They can also suction the nose to get mucus from deaper in.

Antibiotics do not treat RSV.
Mild infections go away without treatment.
Infants and children with a severe RSV infection may be admitted to the hospital .
Treatment will include:

• Oxygen
• Moist (humidified) air
• Fluids through a vein (by IV)

A breathing machine (ventilator) may be needed.

Rarely, RSV infection can cause death in infants. However, this is unlikely if the child is seen by a health care provider in the early stages of the disease .
More severe RSV disease may occur in the following infants:

• Premature infants
• Infants with chronic lung disease
• Infants whose immune system does not work well
• Infants with certain forms of heart disease

In young children, RSV can cause:

• Bronchiolitis
• Croup
• Ear infections
• Lung failure
• Pneumonia

Children who have had RSV bronchiolitis may be more likely to develop asthma.

Call your health care provider if breathing difficulties or other symptoms of this disorder appear. Any breathing difficulties in an infant are an emergency. Seek medical attention right away.

A simple way to help prevent RSV infection is to wash your hands often, especially before touching your baby. It is important to make certain that other people, especially caregivers, take steps to avoid giving RSV to your baby.
The following simple steps can help protect your baby from getting sick:

• Insist that others wash their hands with warm water and soap before touching your baby.
• Have others avoid contact with the baby if they have a cold or fever. If necessary, have them wear a mask.
• Be aware that kissing the baby can spread RSV infection.
• Try to keep young children away from your baby. RSV is very common among young children and easily spreads from child to child.
• Do not smoke inside your house, car, or anywhere near your baby. Exposure to tobacco smoke increases the risk of RSV illness.

Parents of high-risk young infants should avoid crowds during outbreaks of RSV. Moderate-to-large outbreaks are often reported in the local news and newspapers to provide parents with an opportunity to avoid exposure.
The drug Synagis (palivizumab) is approved for the prevention of RSV disease in children younger than 24 months who are at high risk for serious RSV disease. Ask your doctor if your child should receive this medicine.

Synagis HELPS prevent RSV but its not 100%.
Washing your hands
Using hand sanatizer
Wiping down your countertops and other surfaces with Lysol wipes
Using Lysol Nuetra air to kill air born germs
Keeping your child out of stores during RSV, cold and flu season
Keeping sick visitors away
Wearing a mask when sick
All these things helps increase the chance of preventing RSV for your family.

I hear alot of people with stuffy noses or coughs say "Oh its just allergies". 95% of the time it turns out NOT to be just allergies, in my experience anyway. Don't take their word for it. Refuse their company or make them wear a mask and wash their hands. If your baby gets sick, theyre the ones suffering not you. Even if your child gets a cough and runny nose, remember RSV starts out the same way. You can take your child to your pediatrician to be checked. Its better to be safe than sorry. We wish you all the luck and pray you avoid a RSV breakout in your home.
 

Feeding Tubes: Whats the difference?

Feeding Tubes: What's the difference?

A feeding tube is a medical device used to provide nutrition to patients who cannot obtain nutrition by mouth, are unable to swallow safely, or need nutritional supplementation. The state of being fed by a feeding tube is called gavage, enteral feeding or tube feeding. Placement may be temporary for the treatment of acute conditions or lifelong in the case of chronic disabilities. A variety of feeding tubes are used in medical practice. They are usually made of polyurethane or silicone. The diameter of a feeding tube is measured in French units (each French unit equals 0.33 millimeters). They are classified by site of insertion and intended use.

Conditions requiring tube feeding:
The most common types of tubes include those placed through the nose, including Nasogastric, Nasoduodenal, and Nasojejunal tubes, and those placed directly into the abdomen, such as a Gastrostomy, Gastrojejunostomy, or Jejunostomy feeding tube

Nasogastric Feeding Tube

(Sometimes NG tubes are placed through the mouth in cases like here when Liam was on CPAP. The NGtube is the orange tube going into his mouth)

 
A nasogastric feeding tube or NG-tube is passed through the nares (nostril), down the esophagus and into the stomach. This type of feeding tube is generally used for short term feeding, usually less than a month, though some infants and children may use an NG-tube longterm. Individuals who need tube feeding for a longer period of time are typically transitioned to a more permanent gastric feeding tube. The primary advantage of the NG-tube is that it is temporary and relatively non-invasive to place, meaning it can be removed or replaced at any time without surgery. NG-tubes can have complications, particularly related to accidental removal of the tube and nasal irritation.

Nasojejunal and Nasoduodenal Feeding Tube

A Nasojejunal or NJ-tube is similar to an NG-tube except that it is threaded through the stomach and into the jejunum, the middle section of the small intestine. In some cases, a nasoduodenal or ND-tube may be placed into the duodenum, the first part of the small intestine. These types of tubes are used for individuals who are unable to tolerate feeding into the stomach, due to dysfunction of the stomach, impaired gastric motility, severe reflux or vomiting. These types of tubes must be placed in a hospital setting.


Gastrostomy or Gastric feeding tube

A gastric feeding tube (G-tube or "button") is a tube inserted through a small incision in the abdomen into the stomach and is used for long-term enteral nutrition. One type is the percutaneous endoscopic gastrostomy (PEG) tube which is placed endoscopically. The position of the endoscope can be visualized on the outside of the patient's abdomen because it contains a powerful light source. A needle is inserted through the abdomen, visualized within the stomach by the endoscope, and a suture passed through the needle is grasped by the endoscope and pulled up through the esophagus. The suture is then tied to the end of the PEG tube that will be external, and pulled back down through the esophagus, stomach, and out through the abdominal wall. The insertion takes about 20 minutes. The tube is kept within the stomach either by a balloon on its tip (which can be deflated) or by a retention dome which is wider than the tract of the tube. G-tubes may also be placed surgically, using either an open or laparoscopic technique.
Some individuals continue to use a long, catheter-like tube, while others use a small "button" with a detachable extension set for feedings. Most G-tubes can be changed easily at home. Gastric feeding tubes are suitable for long-term use, though they sometimes need to be replaced if used long term. The G-tube can be useful where there is difficulty with swallowing because of neurologic or anatomic disorders (stroke, esophageal atresia, tracheoesophageal fistula), and to avoid the risk of aspiration pneumonia. However, in patients with advanced dementia or adult failure to thrive it does not decrease the risk of pneumonia.
What we like about the Gtube: If it gets pulled out you just put another in. No hospital visits required and no surgery.

Gastric drainage tube

A G-tube may instead be used for gastric drainage as a longer term solution to the condition where blockage in the upper reaches of the small intestine causes bile and acid to accumulate in the stomach, typically leading to periodic vomiting. Where such conditions are only short term, as in a hospital setting, a nasal tube connected to suction is usually used. A blockage lower in the intestinal tract may be addressed with a surgical procedure known as a colostomy, and either type of blockage may be corrected with a bowel resection under appropriate circumstances. If such correction is not possible or practical, nutrition may be supplied by parenteral nutrition.


Gastrojejunostomy feeding tube

(What Liam currently has)

A gastrojejunostomy or GJ feeding tube is a combination device that includes access to both the stomach and the jejunum, or middle part of the small intestine. Typical tubes are placed in a G-tube site or stoma, with a narrower long tube continuing through the stomach and into the small intestine. The GJ-tube is used widely in individuals with severe gastric motility, high risk of aspiration, or an inability to feed into the stomach. It allows the stomach to be continually vented or drained while simultaneously feeding into the small intestine. GJ-tubes are typically placed by an Interventional Radiologist in a hospital setting. The primary complication of GJ-tubes is migration of the long portion of the tube out of the intestine and back into the stomach.
What we like about the GJtube: Feeds go in through one port (J) leaving the stomach port (G) free for meds and to be vented. For Liam is very important that he has this port so that when he is sick and vommits we can vent him and "avoid" aspiration. This help prevent Liam from aspirating and it turning into Pnumonia. Its not fool proof but it helps.

Jejunostomy feeding tube

A jejunostomy feeding tube (J-tube) is a tube surgically inserted through the abdomen and into the jejunum (the second part of the small intestine). The procedure is called a jejunostomy. There are several techniques for placement, including a direct surgical or endoscopic technique, or a more complicated Roux-en-Y procedure. The J-tube may use a long, catheter-like tube or a button. Depending on the placement type, the tube may be changed at home, or may need to be changed at a hospital. A J-tube is helpful for individuals with poor gastric motility, chronic vomiting, or at high risk for aspiration.

The effectiveness of feeding tubes varies greatly depending on what condition they are used to treat.

Children

Feeding tubes are used widely in children with excellent success for a wide variety of conditions. Some children use them temporarily until they are able to eat on their own, while other children require them longterm. Some children only use feeding tubes to supplement their oral diet, while others rely on them exclusively.

Advanced dementia and adult failure to thrive

There is strong evidence that feeding tubes do not help patients with advanced dementia or adult failure to thrive, and expert opinion^[2][3][4][5] recommends they not be offered to these patients. Studies have definitively proven to they do not prolong life, they do not decrease the risk of pneumonia, they do not improve wound healing, they do not help weight gain, and they do not help the patient regain any strength or functional ability such as walking or self-care. Patients with advanced dementia also often pull at their G tubes causing them to be dislodged, and frequently require physical restraints, such as tying their wrists to the bed, to keep this from happening.^[6]

Eating disorders

Patients with the eating disorder anorexia nervosa may be tube fed if they are significantly malnourished. This can be voluntary or in some cases where the patient is resistant to feeding under the force of the Mental Health Act. Patients may tamper with their feeds, which can interfere with the effectiveness of feeding.

ICU

Nasogastric tubes are often used in the intensive care unit (ICU) to provide nutrition to critically ill patients while their medical conditions are addressed. There is moderate evidence for use of feeding tubes in the ICU, especially if requiring mechanical ventilation for more than three days.

Neurologic disease and mechanical obstruction

There is at least moderate evidence for feeding tubes improving outcomes for chronic malnutrition in patients with cancers of the head and neck, acute stroke while the patient undergoes rehab, and ALS.

Complications
Gastric feeding tubes have a variety of complications. As gastric feeding tubes are placed as part of a procedure that punches a hole in the stomach and skin, this can lead to leaking of contents into the abdomen causing severe infection and death. The most frequent complication is irritation around the site of the insertion, generally caused by stomach acid and feedings leaking around the site. Barrier creams, dressings, and frequent cleaning is generally recommended.^{[citation needed]}
Nasogastric feeding tubes, if inserted incorrectly, can cause collapsed lungs and consequently, death; however this is an extremely rare complication.<sup>[7]
NG complications include the tube migrating up out of the stomach and into the lungs therefore "drowning" the patient. Also inserting the tube too far in or not far enough.






(info from http://en.wikipedia.org/wiki/Gastric_feeding_tube#Gastric_feeding_tube)</sup>

 

Mediport Information

Our little Liam has spent so much time in the hospital and has been poked so many times for IV's and blood draws that his veins blow. Blood draws are extremely difficult and IV's are near impossible and last usually no longer than 2 to 24 hours. PICC lines are a no go. He has so much scar tissue that they can only get a newborn sized line in him and cant use it to draw blood or give proper amount of fluids or medicine through it. His last hospital stay he went through 3 IV's in 2 days. One IV only lasted 2 hours before it infiltrated and left Liams arm swollen and painful.

(Infiltrated IV)

 

Because of his frequent stays at the hospital and all his other IV issues, he became a candidate for a mediport.

 

 

In medicine, a port (or portacath) is a small medical appliance that is installed beneath the skin. A catheter connects the port to a vein. Under the skin, the port has a septum through which drugs can be injected and blood samples can be drawn many times, usually with less discomfort for the patient than a more typical "needle stick".
Ports are used mostly to treat hematology and oncology patients, but recently ports have been adapted also for hemodialysis patients.
The port is usually inserted in the upper chest, just below the clavicle or collar bone, leaving the patient's hands free.

(Metal version on the mediport with needle attached)

How it works:
A port consists of a reservoir compartment (the portal) that has a silicone bubble for needle insertion (the septum), with an attached plastic tube (the catheter). The device is surgically inserted under the skin in the upper chest or in the arm and appears as a bump under the skin. It requires no special maintenance and is completely internal so swimming and bathing are not a problem. The catheter runs from the portal and is surgically inserted into a vein (usually the jugular vein, subclavian vein, or superior vena cava). Ideally, the catheter terminates in the superior vena cava, just upstream of the right atrium. This position allows infused agents to be spread throughout the body quickly and efficiently.
The septum is made of a special self-sealing silicone rubber; it can be punctured hundreds of times before it weakens significantly. To administer treatment or to withdraw blood, a health professional will first locate the port and disinfect the area. Then he or she will access the port by puncturing the overlying skin with a 90° Huber point needle although a winged needle may also be used. (Due to its design, there is a very low infection risk, as the breach of skin integrity is never larger than the caliber of the needle. This gives it an advantage over indwelling lines such as the Hickman line.) Negative pressure is created to withdraw blood into the vacuumized needle, to check for blood return and see if the port is functioning normally. Next, the port will be flushed with a saline solution. Then, treatment will begin. After each use, a heparin lock is made by injecting a small amount of heparinized saline (an anticoagulant) into the device. This prevents development of clots within the port or catheter. In some catheter designs where there is a self-sealing valve at the far end, the system is locked with just saline. The port can be left accessed for as long as required. The port is covered in a dressing to protect the site from infection and to secure the needle in position.
If a port is used infrequently, it may be necessary to access the port, flush it with saline, and inject a new heparin lock every month to prevent clotting between uses.
The surgery itself is considered minor, and is typically performed under both local anaesthesia and conscious sedation. Patients sometimes have a little discomfort after the procedure, and can be managed with a narcotic, such as demerol for 24–48 hours.
A port is most commonly inserted as a day surgery procedure in a hospital or clinic by a surgeon or an interventional radiologist, under conscious sedation. When no longer needed, the port can be removed in the operating room.

(xray of a mediport)

Uses:

To deliver total parenteral nutrition in those unable to take (adequate) food orally for a long period of time.

To deliver chemotherapy to cancer patients who must undergo treatment frequently. Chemotherapy is often toxic, and can damage skin and muscle tissue, and therefore should not be delivered through these tissues. Portacaths provide a solution, delivering drugs quickly and efficiently through the entire body via the circulatory system.

To deliver coagulation factors in patients with severe hemophilia.

To withdraw (and/or return) blood to the body in patients who require frequent blood tests, and in hemodialysis patients.

To deliver antibiotics to patients requiring them for a long time or frequently, such as those with cystic fibrosis and bronchiectasis.

Delivering medications to patients with immune disorders.

For treating alpha 1-antitrypsin deficiency with replacement therapy

For delivering radiopaque contrast agents, which enhance contrast in CT imaging.

To fill or withdraw fluid from the Lap-Band or Realize gastric bands used in Bariatric surgeries.

For paitents like Liam who are in the hospital alot and veins wont handle IV's or PICC lines

There are many different types of portacaths. The particular type selected is based on the patient's specific medical conditions.
Portals:

• can be made of plastic, stainless steel, or titanium
• can be single chamber or dual chamber
• vary in height (although the base is about the size of a quarter)

Catheters:

• can be made of biocompatible, medical-grade polyurethane or silicone
• can vary in length (cm)
• can vary in diameter (mm)

Portacaths can be put in the upper chest or arm. The exact positioning itself is variable as it can be inserted to avoid visibility when wearing low cut shirts, and to avoid excess contact due to a backpack or bra strap. The most common placement is on the upper right portion of the chest, with the catheter itself looping through the right subclavian vein down towards the patient's heart. It can also be situated on the muscle that sits on the ribs with the tube coming up towards the heart.

Risks:

1. Infection - a severe bacterial infection can compromise the device, require its surgical removal, and seriously jeopardize the health of the already weak patient.
2. Thrombosis - formation of a blood clot in the catheter may block the device irrevocably. To prevent clotting the portacath is flushed with saline and heparin, usually by a nurse or other medical professional, or someone properly trained that is a family member or the patient, at least once every four weeks, or more often in conjunction with administering medication.
3. Mechanical failure - is extremely unlikely. It is possible in a rare event that part of the system could break, usually the attached catheter, and become lodged in the circulatory system. In such a case it is unlikely to cause serious harm; many patients are asymptomatic but the mechanical failure is discovered because of an inability to flush or withdraw fluids from the port. In those rare instances intervention surgery is required to withdraw the failed vascular access device.
4. Age - If the device is put into a child, the child's growth means that the catheter becomes relatively shorter and will move away from the inferior part of the superior vena cava - it might be necessary to remove or replace it.
5. Pneumothorax - Attempts to gain access to the subclavian vein or jugular vein can injure the lung, possibly leading to this complication. If the pneumothorax is large enough, a chest tube might need to be placed. In experienced hands, the incidence of this complication is about 1%.
6. Arterial injury - The subclavian artery can be inadvertently punctured. This usually leads to a subcutaneous hematoma and occasionally a pseudoaneurysm. An alternative site may need to be used for port placement. Puncture of the carotid artery is more rare, since attempts to access the nearby jugular vein are increasingly done with ultrasound guidance.

(Info gained from http://en.wikipedia.org/wiki/Port_(medical)

 

 

Happy Thanksgiving

We hope you all have a happy Thanksgiving!!

 

 

Little Liam send's his love

 

Prayer Request

We have a few CDHers in need of prayers and positive thoughts.

Little Lulani had surgery and is in pain. She had her re-herniation repaired and they found her adnoids were infected and the infection had spread. They werent able to remove her tonsils due to complication in OR. Please pray for healing and that her pain goes away. Continues prayers sweet princess.


Killian is having difficulties breathing when they try to lower the vent settings. There are no other changes. Please Keep Killian and his family in your prayers. Continues prayers sweet boy.


Continued prayers for all our CDH friends and family out there!!

If you have a special prayer request please post it on our Facebook page:
http://www.facebook.com/ShootingForLiam
 

Happy Birthday

Sir Isaac, Today was your birthday and we hope and pray that you had a great day!! Your a miracle and have come so far. Your so loved by your family and friends as well as countless who have never met you. Your survival of CDH and ability to overcome so much is an inspiration to all. Happy Birthday Sweet boy.

Feeding Pump "Flow Error"

What causes your feeding pump to beep "Flow Error"?

 

 

What usually causes the "Flow Error"?

 

 

What do you do to fix it?

 

 

 

 

 

 

Liam's pump goes off all the time saying "Flow Error" and there are a few causes:

 

1)His hose is kinked- Liam plays with the feeding hose so much it ends up curling up, kinking and cutting off the flow of his formula. It happens daily for us. I had become so frustrated because I just couldn't figure out how to prevent this or fix it. One night after straighting the hose for the hundreth time I finnaly said "forget this!!". I grabbed the tape we get for his guaze pads, took about 2 inches and wrapped it around the area that kept kinking. This little trick prevented the hose from re-kinking after I let it go and saved me alot of headaches.

 

2)Liam clamps off his hose- yes our little 16 month old smart pants has figured out how to clamp his hose off. This is the second thing we check for. The only way we've figure out how to prevent this is to make sure the clamp is hidden by his clothes.

 

3)Internal issues- this can be one of two things.

a)he's not tollerating the feeds and his intestines are pussing back. This happens alot with Liam. He's actually the only kid the nurses have seen actually pop the other port open because his intestines are pushing back.

b)his jport is litterally clogged. We recently learned that his formula and his biotin clogs up his jport not allowing feeds to flow. A GI doctor told us to use soda (ie Pepsi or Coke) once a week to clean the tube out. We push the soda through and let it set 15 to 20 min then continue as usually. This will prevent excess surgeries to switch out the tube. Make sure you talk to your doctor before you do anything though. We were assured the soda would not harm Liam but every case is different.

 

 

 

How do you trouble shoot your feeding pump?

comment or email us shootingforliam@yahoo.com

Question to ALL CDH parents...

Do you do Black Friday Shopping?

 

 

Do you take your CDHers Black Friday shopping?

 

 

 

When do you STOP taking your little ones out?

 

 

 

Liam is 16 months old and because he is medically fragile I do NOT take him out. I actually stop taking him out around end September to early October as soon as I see signs of people getting Colds and Flu's. And we always limit when and where he goes. His health and having our family together instead of seperated is more important.

 

 

**My new goal is to get the blog, tumblr page anf facebook page more active and informational. If you have any questions or advice please feel free to email or message us. shootingforliam@yahoo.com

 

 



Happy Halloween

Current Fundraisers

1) UpperCase Living Party
Our good friend Cecile Phillips is an UpperCase Living consultant and she has opened up a party for benefit Shooting for Liam. UpperCase Living has great products.
Just visit her site http://cphillips.uppercaseliving.net
Click on Products
Click on Associated with Open House
Then Choose "Shooting For Liam"
A portion of your purchase will be donated to Shooting For Liam to help spread CDH awareness.

2) Awareness Bracelets
We are selling rubber teal bracelets embossed to say "SHOOTING FOR LIAM CDH AWARENESS". They are $6 each and free shipping. We are accepting PayPal only for these. Please allow 3 weeks for delivery. Just email shootingforliam@yahoo.com with your order and we will sent you a PayPal invoice.

3) Our good friend Cecile Phillips is also selling 4x6 car decals featuring a teal ribbon and says CDH. She will be donating $2 for every decal sold to Shooting for Liam. Each decal cost $16 and includes tax, shipping and handling. To order message her on her facebook page http://www.facebook.com/cecile.phillips.3

4) We are still asking for donations of teethers for the Teethers for Teethies drive to benefit children at Childrens Hospital Central CA. Donations will be dropped off on October 17th. If your interested in donating please email shootingforliam@yahoo.com

Teethers For Teethies

Shooting For Liam

Teethers For Teethies Drive

 

We are collecting teethers for teething patients at Children's Hospital Central CA.

If you would like to interested in donating please email shootingforliam@yahoo.com

 

Our goal is 100 teethers and we will be taking them to Children's Hospital on October 17th.

BIG NEWS

After much deliberation and prayer we have decided to make it official. We are working with Breath Of Hope inc to become a non-profit chapter here in California. Yes we are taking the plunge and dedicating our time and efforts to raising CDH awareness and helping families affected by CDH. And we couldnt be more excited. I am currently working on a fundraiser to raise money for the CA filling fees. Please help us get this non-profit started so we can help other families. We feel its time for us to start giving back. Please take a few minutes and look at our fundraiser page and check out all the neat things we are selling. We appriciate your support.

A Long Journey

<a href="http://www.TickerFactory.com/">
<img border="0" src="http://tickers.TickerFactory.com/ezt/d/2;10769;28/st/20110714/n/Liam+Michael/dt/-3/k/b37b/age.png"></a>

The past 11 months has been a crazy, stressful journey for us.

Liam had a total of 9 hospital stays,

4 major surgeries,

Too many to count minor procedures,

And is far behind in just about every category.

We've spent more time in the hospital than home,

Our family has spent more time apart than together.

Thankfully we've had 3 1/2 weeks at home now.

 On July 14th Liam will be turning 1!!

Liam at 7 hours old, our first meeting @Kaweah Delta

Our second metting at 48 hours old @UCSF

Liam on ECMO

7/19/11 Taken off ECMO after 4 days

At 1 week old he under went life saving repair surgery 7/21/11

And it was the best birthday gift I had ever recieved

At 1 month old Liam was excubated for the first time

And we got to hold him for the first time

And we got our first family portrait

At 1 month he also got his first bottle

At 1 month and 4 days old Liam got off CPAP and on a Nasal Canula

At 6 weeks (1 1/2 months) Liam got to come home

6 weeks old I took his first portraits at home

September

At 2 months old Liam's 2nd hospital addmitance was @UCSF for an NGtube. He was officially labeled failure to grow. We stayed 10 days.

October

His 3rd hospotal admittance was 2 days after we were discharged from UCSF. We took him to Childrens because he couldn't hold his food down. He under went surgery for  a Nessen Fundoplication and Gtube placement. He also learned he was Biotinadase Defficient and started him on Biotin. We stayed 4 weeks, spending his first Halloween and the begining of November in the hospital.

We were fortunate to spend Thanksgiving and Christmas at home.

We also got to bring in the new year at home

But in January Liam cought a cold that landed us in the hospital for 3 days (admittance #3)

In Febuary he got "sick" again and we went back to Childrens. He couldn't hold down his 30 calorie feeds. (admittance #4)

In March we were back at Childrens for the same issues resulting in admittance #5. Liam under went surgery to take out the Gtube and replace it with a GJtube. This worked...for a short period of time.

48 hours after being discharged we took Liam right back in for yet again the same issues. Admittance #6. They played around with his formula and said they figured it was just a severe food allergy and was put on Elecare.

Nothing seemed to help Liams underlying respitory issues that we were sure was responsible for all the vommiting. In April we were back at Childrens for yet again the same issues. Admittance #7. From there Liam was air lifted to UCSF where they tried to figure out if he'd need his high right side diaphragm repaired. They decided not to risk it and after 2 weeks discharged Liam on oxygen.

Admittance #8 was just for a chest CT and bronchioscope. They figured out that his right lung doesnt fully expand because of his high right diaphragm and his left lung is way underdeveloped. His upper airway is slightly floopy. The CT also shows pnumonia and the Bronch showed an infection in his airway. Regular xrays dont show pnumonia in Liam when its in his lower right lung.

Admittance #9 was due to a severe allergic reaction causing asthma attacks and poor air movement in his lungs.

Its been a crazy journey so far. We've been blessed every step of the way, even if its frustrated us more than anything weve ever been through before. We've had 3 1/2 weeks Through it all our little man has kept a smile on his face.

Comming Soon

We are currently working on events to spread CDH awareness. Please bare with us. If you have any questions, concers, ideas, or would like to help feel free to email us at shootingforliam@yahoo.com