Baby Steps

Meredith is doing fairly well today. She is not on as many medications as she was and they removed her chest tube (it was draining fluid from her chest). We have been holding her most of the day. She has been awake quite a bit and has developed the trick of turning herself crimson when she gets really mad. She is not out of the woods yet, but is making faster progress than was expected.

Today Stephanie and I begin our training to care for Meredith's special needs when we take her home. We begin with CPR - probably a good idea given all the issues with her heart.

-Chip

Surgery

Meredith's surgery went perfect. She was done by 11:00 am and just had her breathing tube removed (4:40 pm). All indications are that she should have a speedy recovery.

-Chip

Holding Time

There is no change in Meredith's condition or diagnosis. She is receiving only 3 things via IV and is getting a heavy dose of holding from Stephanie and I. Unless there is news, I will not post again until Monday after the surgery.

Room to Breathe

Today the cardiologist allowed Meredith to be have her breathing tube removed until her surgery on Monday. She very much appreciated this. The best part for Stephanie and I is that now we can hold her. She still has a bunch of tubes hooked up to her so we have to be very careful - but of course it is worth it. There should not be much to report until the surgery Monday. Again, we are so grateful for everything that everyone has done for us, we especially appreciate your prayers in our behalf.

-Chip

Surgery Monday, Not Friday

It turns out that a child is being brought in from Idaho with an emergency condition that will force all the heart patient's surgeries to be bumped back. Therefore, Meredith's surgery will be on Monday, not Friday as previously reported below. She is stable and should continue to be so over the weekend so I no have no qualms with another child with an emergency bumping her back.

The name of her surgeon is Dr. Hawkins. His profile indicates that he graduated from the University of Kansas, which we all know has a suspect engineering department and overrated basketball team, but I guess I will not hold that against him.

Meredith has been more active today, but over all no real changes. Her oxygen levels have been a little bit cyclical, but not enough to cause any concern. Her heart rate has decreased in the last 2 days to a more normal level. It was in the 190s and now is in the 140s. She also began receiving breast milk through a feeding tube and was very grateful for the switch from the liquid nutrition that was being pumped directly into her veins (She is actually getting a little bit of both).

I have added another link that covers many of Meredith's problems.

Correction I said in my first post that Meredith's left ventricle is underdeveloped, that was wrong. It is her right ventricle that is underdeveloped. As it turns out having a small RV is not as bad as having a small LV.
-Chip

Surgery on Friday

We spoke with our cardiologist (Dr. Puchalski) today and he advised us what the team thought was the best path to go. Instead of choosing surgery #1 or #2 below, they want to try and buy some time. If they had to make a decision right now they would choose the single ventricle route. However, they think that by fixing the coartaction and banding the pulmonary artery, they may be able to get the right ventricle to grow enough to where Meredith would be able to have a two-ventricle heart. After her surgery on Friday, Meredith should have a recovery period of about 2 weeks, depending on how she is doing. Then we would come back in 5-6 months for the big operation, with recovery times being closer to a month.

-Chip

Narrowing the Possibilites

This morning the cardiologist (Putrowski) came and spoke with us again. Although it will depend on what the surgeon says tomorrow, it is looking likely that Meredith will receive operation #2 explained below - the right ventricle is just too small. He did say however, that when they end up doing a single ventricle heart, her setup, as opposed to having the left ventricle being too small, is better and has a better statistical prognosis. As it stands now, after the surgery, she will have a 75%-80% chance of living 5 more years. However, most people live to their late teens and some even live as long as 30-40. I have never been one to buy too much into the statistics an indicator of future action so don't think that is getting me down, it is just an average. It is also looking like surgery will be on Friday, but again we will not know until tomorrow.

I have read some about the individual surgeries in a book here at the hospital but have not had time to find links yet. The second surgery is referred to as the Glenn (of course with a name like that how could it be bad) and the third is the Fontan.

Meredith is being kept comfortable and has her eyes open quite a bit. Before she was in the hospital she would often stick her tongue out, just because she could. She will look us in the eyes and stick out that little tongue around her breathing tube - I can't explain in words how that make us feel.

Again we are very appreciative of all the support that we have received. Thank you.

-Chip

Revision - Both Doctors Were Actually Saying the Same Thing

So after I had a chance to speak with the new cardiologist I realized that he was saying the same thing as the first, just with new information. Here it is in a nutshell.

Operation #1: This operation will fix the valve, fix the aorta pinch, and will set the heart to operate with 2 ventricals.

Upside: There will be only one operation and the long term prognosis is good - pretty much a normal life span.

Downside: This operation is much more risky in the short term.

Operation #2: This operation will fix the aorta pinch and will involve some rerouting to allow the heart to work with only one ventrical.

Upside:This operation has a very good short term risk factor - Meredith has an excellent chance of making it out of the operating room.

Downside:This route will actually involve 3 operations - 1 now, 1 when she is about 5 months, and 1 when she is about 2.5 years old. This route also has a poorer long term prognosis - expected life span is 20-40 years.

I hope that clears things up a little.

-Chip

New Cardiologist, New Information - not good news

Well I have been at home all morning taking care of other things that need to be done, and need to be done by me. I received a call from Stephanie at the hospital who said that a new cardiologist had been by and spoken with her. His opinion was not welcome.

Apparently there is another problem with the heart that was not evident upon the initial review of Meredith's echocardiogram. Because Stephanie was relaying the information all I have is a general description, no medical terminology. Meredith's heart valves are letting a lot of blood back into the heart after it has already been sent out to the body. According to this doctor, this is the most serious of the problems with her heart. He said that they may be able to do surgery #1, where they would fix the heart to rely on the one good ventricle, or they may be forced to try a different surgery (#2) that does not have a high success rate, but may be her only chance.

The good news if they do #1, Meredith would have an expected lifespan of up to 40 years. We were told initially that with this surgery she would probaly not live past her teens.

On Wednesday, all 13 cardiologists and the surgeons will get together and discuss our Meredith's seriously malfunctioning heart. It is after that meeting that they will give us their recommendation.

-Chip

Why is Meredith in the Hospital?

I will post the whole story at a later date. For the time being it will be enough to say that Meredith has a very rare congenital heart defect which includes L-Type Transposition of the Great Arteries, ventricular septal defect, and the narrowing of the Aorta. The result of all this is that her left ventricle is underdeveloped. She will have surgery, and soon, but the doctors are still gathering data so that they can give us their best recommendation. I will try to update this daily, or whenever something new is known.

Thank you to all who have been supportive, we truly appreciate your support, love and prayers.

-Chip