The Road to Recovery

Hello everyone. Thought we'd share an update....

Jennifer's exercise levels are low compared to pre-surgery levels. More oxygen is required for rest and activity, 3-6 liters versus 1-3 liters.

Flolan (intravenous medication) remains unchanged. Getting outside at least once we day, we’re able to stave off cabin fever. We are now a great source for obscure movie reviews.

With surgery 12 days ago, Jenn's recovery rate is being monitored closely. On Wednesday the 25th we met the specialty clinic team for a scheduled appointment.

She is believed to have pleural effusion, which is excess fluid that accumulates in the pleural cavity, the fluid-filled space that surrounds the lungs.

The fluid is a combination of serum, pus and or blood. The surgeon, Dr. Ring, speculates blood resulting from surgery, which would also explain the fluid’s immobility throughout the cavity.

An excessive amount of such fluid impairs breathing by limiting the expansion of the lungs during inhalation. From x-rays, 500-1,000 ml is estimated in the right lung with less in the left lung.

There are 2 options:

1. Often done as outpatient care, Thoracentesis is an invasive procedure to remove fluid. A cannula, or hollow needle, is introduced into the thorax to draw the unwanted pleural fluid out.
2. Surgery, which also requires a mechanical "scraping" to remove. Surgery would require a hospital stay plus another incision.

If the fluid becomes hardened, it can be difficult for the body to absorb it, and or for it to be removed through use of a syringe.

Jennifer's INR level, a measurement of blood thickness, is 3.5. In order to operate, we must thicken the blood by stopping use of Coumadin and increasing intake of vitamin K.

Coumadin is a blood thinner and a medication in Jennifer's routine to limit the risk of blood clots.

In the meantime, Jennifer is doubling her Lasix. Lasix is an oral medication to aid the body in removing fluid, and also a part of Jennifer's normal routine.

Jennifer is also increasing potassium levels, to contradict the extra fluid loss from doubling Lasix. She is eating more regularly, up throughout most of the day, and still smiling.

Our next appointments are on Monday to check INR levels, evaluate fluid levels, and make decisions.

Jennifer and her Mother, Celina were planning to depart by plane to Albuquerque on Wednesday.

Her father, George, will drive the vehicle back starting Tuesday, after dropping me off at DFW for a trip to Chicago.

If option 1 is chosen, travel plans should be uninterrupted. If option 2 is chosen, there will be a re-evaluation as a hospital stay is accommodated.

There are 2 WINS we're marking in the books. First, Jennifer's x-ray films have shown improvement in fluid levels from Monday's exam. That's before doubling of the Lasix.

Second, Jennifer's incentive spirometer results have increased from a high water mark of 1,000 milliliters to over 1,500 milliliters. Left lung inflation has improved.

I must admit, I did not anticipate this additional challenge. It’s a good reminder of what Yogi Berra told us long ago, "It ain't over 'til it's over."

I continue to admire how Jennifer takes in this experience, including its challenges. It was tough information to take, even as it helped us understand current health difficulties.

But Jennifer is strong and will overcome. We're learning how deep love can run.

@ our Dallas Home

Jennifer is ecstatic to be out of the hospital. Despite appreciation for the special attention, she's happy to be away from the poking, prodding and sleepless nights. Jennifer received in-patient care until late into the afternoon on Saturday, February 21st.

We were told to expect a 3-7 day stay in the hospital after surgery. Jennifer was in for 5. We’ve been in Dallas for a little over a week, since Sunday February 15th. The remainder of our stay in Dallas will be in a rental house we found on www.homeaway.com.

As with many caring for Jennifer, the anesthesiologist took a special interest, having felt an immediate connection. Young and female, she made sure extra care and attention was given to the suture.

A comparatively small scar will result, ensured by the entire surgical team from incision to stitch. Jennifer’s scar will be a badge of honor, and serve to remind us of her strength throughout the process.

We are focused day-by-day on rehabilitation. Jennifer’s days are filled with rest, light eating, and a variety of light exercises. Nights are filled with intermittent sleep, early hour pain medication, and the occasional bloody nose.

Shortness of breath persists, even more so than before surgery. The culprit, at least partially, is atelectasis. A common postoperative complication, atelectasis is a collapse of lung tissue. It is a condition where the alveoli are deflated. Alveoli are "spherical outcroppings of the respiratory bronchioles and are the primary sites of gas exchange with the blood."

Jennifer’s oxygen saturation levels are below pre-surgery levels at rest and with exertion. More oxygen is required to maintain minimum desired level of saturation, 90%. What took 2-3 liters at elevation in Albuquerque is now taking 4-6 liters in Dallas.

At least for the near future, Jennifer is expected to maintain use of assisted oxygen and the intravenous medication Flolan. As we move along, levels of each will be lowered and Jennifer's reaction gauged. We are unsure what outcome can be achieved. While some Pulmonary Hypertension will always exist, we are hopeful we can eliminate the use of assisted oxygen and replace the use of Flolan with an oral medication.

Focusing on the present, Jennifer’s immediate goal is to complete breathing exercises every 2 hours, and to take increasingly longer walks every 4 hours. The respiratory exercises are done using an incentive spirometer. Anyone who’s suffered from a lung or heart ailment will remember this device, likely with disdain. But combined with very light physical exertion, its use is critically important. Walking consists of a few laps around the living room.

It is difficult to interpret what is attributable to surgical recovery and what our new “baseline” is. We continue to monitor Jennifer’s health closely, with pending follow-up appointments scheduled over the next week.

A good resource to plan for life after open heart surgery is named the AHA / ACC 2008 Guidelines of Adults with Congenital Heart Disease http://circ.ahajournals.org/cgi/reprint/CIRCULATIONAHA.108.190690.

As health care has advanced, a larger community of adults with congenital heart disease exists. Despite operative success, the condition should be monitored throughout life. With the importance often under-estimated, these guidelines are a great place to start.

Each day brings greater regularity. Small but important steps are being made towards realizing the benefits of surgery.

Big News from Dallas: Open Heart Surgery

Open heart surgery was a major success! Jennifer's heart defects have been fully repaired.

The pulmonary vein anomaly, defined as a "congenital heart defect," existed since birth. The atrial septal defect, the hole between the right and left atrium chambers in Jennifer's heart, resulted from high pressures caused by the pulmonary hypertension.

The current belief is the pulmonary hypertension has been "neutralized." Meaning, what exists will remain but we're hopeful it will get no worse moving forward. We will learn more as we move along over the next few weeks.

The pulmonary vein anomaly, once thought to include only 1 of 3 veins on the right side of Jennifer's heart, was more extensive. All 3 veins needed to be "baffled" so oxygenated, "blue" blood could flow properly to the left side of the heart for distribution throughout the vascular system.

The surgeon, Dr. Ring, was prepared to address this additional complexity. Dr. Torres recommended Dr. Ring for this very purpose, knowing he would be poised and ready to handle complications in stride.

Improvements have been recorded for most of the vital pressure measurements, post-operation. Jennifer has achieved her goal, set so many months ago, of a successful surgical outcome.

Jennifer initially recovered in the ICU until Thursday night, at which point she was transferred around 10 pm CST to a "step down" unit in the Telemetry section of the hospital.

As of Friday morning, coinciding with the writing of this post, the plan and goal of medical staff is to discharge Jennifer later today or Saturday.

We are working through a few complications, which are not expected to persist. Jennifer is feeling nauseous, tired, and is in some pain, but all things considered we could not have scripted a better outcome.

There's a long road to recovery, which we can now focus on. The total rehabilitation period can last up to 3 months, with the first phase 6-8 weeks.

http://www.webmd.com/heart-disease/guide/heart-disease-recovering-after-heart-surgery gives some sense of what recovery will entail, as it talks about standard rehabilitation for overcoming heart surgery.

We have a new goal, which we're calling "back to basics." This means establishing a routine, to include things such as normal and deep breathing, eating a regularly, healthy diet, walking and other exercise, copious rest, etc.

This morning Jennifer had a bagel with cream cheese, banana, and cranberry juice. She's also taking 3 walks a day. In fact, Jennifer purportedly set a new speed record for walking the perimeter of the ICU. So we're on track.

A testament to the power of the human will, this experience has reinforced how blessed we feel to be surrounded by such a powerful support network.

Friends, family, colleagues and others have come to our aid, helping in any way possible to ease the burden Jennifer and her caregivers bear. When the load's been greatest, the support's been strongest.

The surgical team, physicians, nurses and others have all taken a special interest in Jennifer. It's clear her attitude and youth have won over their hearts, giving us a special level of care and oversight.

We hardly have a minute where someone's not coming by and checking on her health, making sure she's comfortable and disciplined about her recovery.

While some of you have heard this, it's worth repeating. Not all battles are won, and this war is far from over. But in the immortal words of Mark Twain "it's not the size of the dog in the fight, it's the size of the fight in the dog." Or in this case, the beautiful young woman.

NEWS FROM DALLAS: Will there be OPEN HEART SURGERY?

A right heart catheterization was completed at 12 pm CST Monday, 16 Feb 2009 by Dr. John Warner http://www.utsouthwestern.edu/findfac/professional/0,,17742,00.html.

Good news! Decision rendered by Dr. Ring, surgeon http://www.utsouthwestern.edu/findfac/professional/0,,16089,00.html , is that open heart surgery is a go for Tuesday 17 Feb 2009.

3 primary indicators are all positive from the right heart catheterization, which is an invasive procedure to closely evaluate the pressures in the heart. A catheter was routed through Jennifer's femoral vein (in her right leg) into her right atrium, right ventrical, and pulmonary artery.

1). The first, pulmonary vascular resistance (PVR), has improved from 8.1 three months ago to 6.7. Measured in dynes, PVR is a term used to define the resistance to flow that must be overcome from the vasculature of the lungs.

2). Secondly, pulmonary artery pressure, a measurement of blood pressure in the pulmonary artery, has improved from 64 initially, to the 50s, and now resides in the 30s.

3). Third, the degree of "left-to-right" shunting. Jennifer has a hole in her heart, defined specifically as an atrial septal defect (ASD). The shunting can be defined by the volume of blood that flows through it for a period of time. In Jennifer's case, the volume has decreased from 4 liters to 2.5, representative of half the total that should be pumped from her heart to vascular system.

While the shunting is not ideal, it has both gone down and is an indicator of what could result during the recovery period. Meaning, significant progress quickly is possible after the surgery, given how much the shunt is being utilized.

Surgery is scheduled for 7 am. Jennifer will be wheeled down to the Operating Room (OR) at 6 am for preparations.

During the 3-4 hours, Jennifer's heart will be momentarily stopped. She will remain stable through the use of a heart-lung machine. During that time, a simultaneous repair will be made to close the hole in her heart and "baffle" her pulmonary vein.

One of Jennifer's pulmonary veins, typically architected to deliver oxygenated blood from the lungs to the left side of the heart, is currently "recycling" blood back into the right side of the heart. This creates a "loop within a loop."

The surgery will redesign this vein to deliver oxygenated blood, alongside the other pulmonary veins, to the left side of the heart.

Friends and family remain positive, highly optimistic, and confident. Despite the seriousness of the situation, we are all managing to share a few laughs.