Happy Halloween

The Pumpkin Patch

Raegan came home

Raegan got to come home today. I am hoping we can make it past her 1st birthday before we have to go back to the hospital. Well we are off to the pumpkin patch while the weather is still nice.

Stephanie the resident

Raegan and Stephanie
Raegan wanted to show off her costume a little early.

Surgery went great

The surgery went great. The doctors came out about an hour after surgery and said Raegan did great and she is back in the NICU recovering. The neurosurgeon said that Raegan might be able to come on Saturday. She just needs another 48 hours of antibiotics. I am really excited, I can't wait to have her home again. I will post some pictures from this surgery later.

Definitions

I am always using abbreviations when I am posting a blog, and I am not sure if I have explained what they all stand for, so I thought I would start a list:

• NICU - Neonatal intensive care unit
• ROP- Retinopathy of prematurity
• CPAP - Continuous positive air pressure - A nasal CPAP device consists of a large tube with tiny prongs that fit into the baby's nose, which is hooked to a machine that provides oxygenated air into the baby's air passages and lungs. The pressure from the CPAP machine helps keep a preemie's lungs open so he or she can breathe. However, the machine does not provide breaths for the baby, so the baby breathes on his or her own.
• Apena- spell where baby stops breathing
• Brady - Bradycardia, when the heart rate drops low
• As & Bs - Apnea and bradys
• HMF - Human milk fortifier - added to breast milk to increase calories as premies need more calories to gain weight
• IUGR - Intrauterine growth restriction - because of conditions in the uterus or problems with the placenta the baby fails to grow at at normal weight
• O2 - Oxygen
• NG tube - Nasogastric tube (feeding tube through the nose)
• TPN - Total Parenteral Nutrition - Intravenous provision of nutrients when enteral intake is inadequate or impossible.
• PDA-Pantent ductus arteriosus, an opening in a heart valve that normally closes after normal full term birth. In preemies, there is a chance it stays open. Usually treated with medicine- a blood thinner that relaxes it and closes it. Or if needed a quick minor surgery to close the valve.
• PICC line -Peripherally inserted central catheter
  
• VP Shunt - Ventriculoperitoneal shunt is a surgery performed to relieve pressure inside the skull (intracranial pressure) caused by water on the brain (hydrocephalus). The fluid is drawn off (shunted) from the ventricles of the brain into the abdominal cavity or in rare instances, into the pleural space in the chest.
• EVD - External Ventricular Drainage, the EVD system uses a catheter (a thin, plastic tube) which is placed in the ventricle of the brain. This is connected to a drainage system (see diagram). The drainage system works by using gravity.

Early Morning

Good morning.... I am up early and getting ready to go see Raegan, she is having her fourth surgery this morning at 9:30a to have her vp shunt put back in. I hoping things go well so she can come home next week. I will post pictures and an update later today to let everyone know how she did.

Taco Pockets

I saw these on Rachel Ray and made them. They turned out really good.

Taco Pockets

Ingredients

• 2 tablespoons EVOO - Extra Virgin Olive Oil
• 1 1/2 pounds ground sirloin
• 1 jalapeño pepper, seeded and finely chopped
• 2 cloves garlic, finely chopped or grated
• 1 tablespoon (about a palmful) chili powder
• 1 teaspoons (about a half a palmful) ground cumin
• A few dashes hot sauce
• 2 scallions, whites and greens chopped
• Salt and ground black pepper
• 4 large flour tortillas
• 1 cup taco sauce (whatever variety you like)
• 1 cup shredded cheddar cheese
• 1/2 head iceberg lettuce, finely shredded
• 4 small tomatoes, finely chopped

Yields: 4 servings

Preparation

Place a large skillet over medium-high heat with 2 turns of the pan of EVOO, about 2 tablespoons.

In a large mixing bowl, combine ground sirloin, jalapeño, garlic, chili powder, cumin, hot sauce, scallions, salt and pepper. Form the meat mixture into four patties. Cook the patties in the hot pan until golden brown and cooked through, about 5 minutes per side.

While the burger patties are cooking, turn a gas burner onto high and blister the flour tortillas by passing them over the flame quickly. If you don't have a gas stove, place a dry skillet over high heat and lay the tortillas, one at a time, into the hot skillet, blistering them on both sides.

As the patties finish cooking, transfer them to the tortillas and top each with some taco sauce, shredded cheese, lettuce and tomatoes. Fold the tortilla around the burger, enclosing it in a pocket. Cut each pocket open on a diagonal and serve.

Surgery #4

Alright Raegan is going to have surgery on Thursday to have her vp shunt put back in. I am hoping surgery will go well and by this time next week she should be back home.

Hospital Bill

Just for laughs I thought I would share the statement that I got from the hospital today for Raegans first stay at the hospital.

Date of service 07/03/2008- 09/25/2008

Laboratory -----------------$22,521.34
Other Diagnostic Svc -------$7,353.64
OR Services----------------$12,653.40
Pharmacy------------------$19,095.83
Radiology ------------------$11,342.87
Room Charges -------------$305,484.00
Supplies -------------------$16,066.62
Therapy Services ----------$64,454.70
Total Charges -----------$458,972.40

Amount Patient Owes $500.00

Video

Video from yesterday of Raegan's external Shunt

Raegan's External Shunt from Cynthia Johnson on Vimeo.

Raegan's External Shunt

These pictures are from Raegan's surgery on Saturday.

Hydrocephalus

Today those diagnosed with hydrocephalus during infancy are given a good prognosis due to an amazing mechanical device called a shunt. Because of the shunt most children will develop relatively normal intelligence and be able to live normal lives. The risks of damage to the central nervous system are reduced by draining the cerbrospinal fluid away from the brain therefore stabilizing the intracranial pressure. Unfortunately, those needing shunts are prone to multiple problems related to shunt dependency and malfunction. As noted by Doctors Drake and Sainte-Rose, shunts are only a temporary solution for a permanent condition.

As quoted by Doctors Drake and Sainte-Rose: "For inherent technical reasons, it is probable that a "shunt forever" is an impossible dream, but delaying shunt malfunction as long as possible is a realistic goal."

Shunt Revision -
When a shunt system needs to be replaced, the operation is referred to as a revision. Which simply mean to change or modify. When a shunt is first put in place, it is the dream of the neurosurgeon and patient that the shunt will last forever. Unfortunately, shunts do not last forever and it is unrealistic to think they ever will. Shunts are susceptible to failures and malfunctions, just like any other mechanical device. Reasons why a shunt may need to be revised:

* Mechanical failures such as the valve has failed to work correctly.
* Use of the wrong type of shunt valve
* Infections* Obstructions* Need to lengthen or replace the distal catheter or valve.

Signs of Possible Shunt Complications -
If a shunt system fails to operate correctly, becomes infected, or obstructed, the patients life and cognitive faculties are placed at risk. Often times the must be revised under emergency conditions. Most signs and symptoms are identical to those at diagnosis. Other symptoms may relate to a particular type of shunt placement.

Shunt Infection -
Shunt infections are the most serious complication related to the treatment of hydrocephalus. They most commonly occur within one to two months following a placement or revision procedure. It is also known that infection represents the most expensive burden of CSF shunt implantation; an average of 8-45 thousands of dollars are needed for each treated patient. The most common germs involved in early shunt infections are Staphylococcus Epidermidis and Staphylococcus Aureus; these bacteria may enter during surgery, from hair follicles and/or sebaceous glands opened by the surgical incision.

Treatment of shunt infections is usually a long process requiring hospitalization. When you have a shunt infection you are placed on high doses of intravenous antibiotics to fight off the infection. The entire shunt system is removed to prevent any possibility of reintroducing the infection to your body. Because the shunt system must be removed, the CSF will be drained through an external ventricle drainage (EVD) system. An EVD consists of a ventricular catheter, a shunt valve, and a bag which collects CSF at the distal end. With the EVD system you will continue to receive intravenous antibiotics until further tests of CSF indicate that the infection is gone. This could take anywhere from two to fourteen days. After the CSF has been proven to be sterile for seven to fourteen days, your neurosurgeon will insert a new shunt system.

Back in the hospital

As the nurse put it "Raegan is a repeat customer" at the hospital. Raegan had not had gone poop for a few days so I took her to the doctor and they send me to OHSU so they could do a CT scan and see if Raegans shunt was working. The shunt is working, but she has an infection, so they just her back to surgery to take out the internal shunt and place and external shunt until the infection is gone and then she will have surgery to have the internal shunt placed back in. I am guessing Raegan will have to be here for about 3 weeks. If she comes back home sooner that will be great. We will stay here as long as it takes for her to feel better. Well I will post another blog later on today when Raegan is out of surgery and let everyone know how she did.

Cousins

Raegan born July 3rd
Jett born July 21st