Late Update

Stephanie reminded me that I had not yet updated Meredith's condition since our last visit. The doctor decided that her clot was as hard as a rock and was not going anywhere. He took her off of the Plavix like drug.

Follow up

Meredith had another echo and the clot has not changed size. The Dr. was happy with this and did not change anything at this time. We go back again in 4 months.

More Information

Meredith's cardiologist called today. He said that he is going to put Meredith on a Plavix like drug for 2 months and then she will have another echo and and we will go from there. More information can be found on the drug she will be taking at http://www.mayoclinic.com/health/drug-information/DR600557.

Bummer

We took Meredith to the cardiologist today for her annual checkup. She had an echo, an EKG (which had to be done twice as both Stephanie and I had left our cell phones on and it messed up the first results), and a chest x-ray.

When the Dr. came into the room I should have known by his demeanor that not all was well in Shanertown. Last time he was so upbeat I would call his behavior ecstatic, this time he was all business.

It turns out the Meredith has a clot in her right atrium. The better news is that if the clot does break free it will end up her lungs which will make her rather sick but will not cause a stoke. The clot means 2 things. First, that we have to figure out what to do about this clot, and second, that we will have to change the level and type of maintenance for her going forward as what we have been doing it obviously not working right.

I must say that I was in shock - I suppose I just assumed that her heart was fixed and we would never have anything but perfect follow up visits. I even snapped at Meredith for whining a little while we were talking to the Dr. He gave me an odd look that did not really register until later when Stephanie scolded me for my snappish behavior. I know this is illogical. For years I have been telling people that Meredith will likely have issues her whole life when they try and minimize her problems and act as if the one surgery was the fix all like a cast on a broken arm. I guess I started buying what I was selling.

Anyway, surgery is not in her future. The Dr. said that they would treat with some regiment of drugs to try and dissolve it, and prevent future clots. What drugs exactly have yet to be determined, the Dr. is still waiting on a call back from 1-800-clots.

Almost as an afterthought, both to the Dr. and yours truly, is the fact that she still has a leaky valve. However, given the relative danger compared to her more immediate problems this topic continues to be pushed to the back burner.

Many Happy Returns: Fantastic Function

Yesterday Meredith had a follow up echo and appointment. She was able to do the echo un-sedated, but with a little help from her friend Aladdin. Dr. Puchalski said that her left ventricle function was fantastic, better than he could have hoped for. He was almost hopping joy. Of course this made us happy as well.

We have much to be thankful for.

-Chip

Doing Good

I have not written in a while and I just wanted to post and say that Meredith is doing well. She is taking a beta blocker and aspirin and will go back to the cardiologist in August. Thanks for all your prayers and help.

-Chip

Cath Results

First, I have to say that I was amazed at the cath pictures. Basically it looked like a continuous x-ray taken at many angles. The Dr./tech would squirt little bits of dye into the heart and then watch where it would go. Similar to if you were to look to the smoke of a campfire to determine which way the wind was blowing (assuming that the wind was blowing one direction - maybe that was not the greatest analogy).

So what did they find? Well it turns out that one of the coronaries has a bit of a reduction in its diameter as it comes off the heart and makes roughly a 90 degree turn. One doctor estimated that it may be reducing the blood flow by at most 50%.
The thing is, with the information we have now, we do not know that this reduction in blood flow is the cause of her decreased left ventricle function.

So what is going to happen? We do not know. There are several tests that they could try in order to pin down if this is the cause or not. The problem is, even if it is, there may not really be anything they can do about it. The location of the reduction in the coronary is in a spot that rules out putting in a stint, and it is unlikely that they would want to open her back up to try and fix this.

We will be exploring our options in the coming weeks.

-Chip

Heart Cath

Meredith is going to have a heart cath on March 24th so that the doctors can get a better picture of how her heart is doing on the beta blockers.

-Chip

Long Sedated Echo

Shortly after her surgery the doctors said that Meredith's left ventricle function was down. Down from what, I don't know, but I took it as meaning not doing as well as they would have liked. Since at that point having her simply recover from the surgery was the most important thing nothing more was mentioned (to us anyway) regarding this.

Today Meredith had a follow up sedated echo. Unfortunately, her left ventricle's function continues to be "down". They also discovered that she still has some valve regurgitation, but it is mild enough to be ignored for the time being. Meredith is still not gaining weight, even though we coat everything in butter and give her ice cream every night. This may be due to her left ventricle function.

My question was "fine, what are they going to do to fix it?" We live in a world of spare parts (computers, cars, etc) that it is hard to remember that fixing her heart is not just a matter of hitting the local scrap yard. The doctors are going to start her on some beta blockers to see if that has any effect. This is a medicine that can create enough complicated side effects that Stephanie will have to take Meredith to the Hospital to administer her first dose. If that goes well then we can give her the medicine at home.

The rest of my private thoughts regarding this will remain just that for the time being, private.

-Chip

Post-Op-Follow-up-App

Meredith went for her follow-up appointment today. The doctor said that she was doing pretty good except that she has lost a little weight. A nutritionist is supposed to be contacting us later today to talk about packing in the calories. The doctor also scheduled a sedated echo for about a month out. They want to take a closer look on how her heart is functioning. Unless something post-worthy happens between now and then, I will post after her next appointment.

-Chip

Speedy Recovery

Meredith's recovery is going great. For the most part she appears to be back to normal, scooting and walking around and playing with toys. Her chest incision bothers her occasionally, but not too much. We go for her 2 week check up January 4.

-Chip

Home

This morning Meredith was discharged and came home. Unfortunately, I was at a deposition and was not the one to bring her home. We have a follow-up appointment in 2 weeks. I will post again at that time, unless something major happens between now and then.

-Chip

Doing Well

Meredith continues to recover a brisk pace. She is eating quite a bit more and had her first major bowel movement. Although she has been cleared to go to the floor when a bed opens up, there is the possibility that she will be discharged from the ICU. The Drs will do one more echo, I think this afternoon. Meredith could be released as early as tomorrow.

Obviously we are ecstatic at the rate of her recovery. We recognize God's hand in our lives and are so grateful for his blessings. Thank you again to all of you for your many prayers on Meredith's behalf.

-Chip

No More Tubes

This morning Meredith had the rest of her lines removed. They left an IV in her hand (as is their policy) but she is no longer tethered to the pumps. She nursed and also ate some cheerios. This also means that she is cleared to go to the floor as soon as a bed becomes available.

Although Meredith has been awake a lot, she has mostly just laid there with her eyes open - no facial expressions and not much movement. Last night when Stephanie and I returned from dinner (they kick us out of the ICU from 7-8 am and pm for shift change and this is when we eat) she began smiling and moving more. It was nice to see a glimpse of her bubbly personality.

-Chip

Progress and Patience

Meredith is doing very well. She has been more awake and has eaten a little bit of food. This morning they removed her chest tubes and began weaning her off one of the last meds that she will have to get off of before going to the floor. We are hoping to go to the floor tomorrow, but it will likely be Monday. The criteria for going home (as I heard it anyway) are:


1) All meds are being given orally

2) She is off the oxygen

3) She is eating and keeping her food down

So as long as she continues to improve at this rate she should be able to go home this next week.

-Chip

No More Breathing Tube :)

About 5 minutes ago Meredith's breathing tube was removed. She was not happy about it, which was good. She appears to be breathing ok on her own. Her face is still a little swollen and she cannot open her eyes very far. She also had some other tube removed that went into her heart, but I do remember its name nor its function. Meredith still has several IVs, her art line, a line into her jugular, 3 chest tubes, and temporary pacemaker leads. I am sure that I am forgetting something. My point is that while having her breathing tube removed is definite progress, she still has a ways to go.

-Chip

Day 2 Post-OP

Meredith continues to rest sedated with a breathing tube. The echo tech recently did an echo and one of the cardiologists looked at it. There did not appear to be any real change from yesterday (good or bad), so when Dr. Hawkins gets out of surgery he will take a look at it and see what he wants to do. What he might do is start weaning her off her some of her meds if she is doing well, or stay the course for another day if she has not improved enough.

-Chip

The Missing VSD

*** After I posted this for the first time Stephanie pointed out that there were numerous typos and errors. Upon review I discovered that I posted my first draft instead of the final version that I had edited. I have now edited this post and hope it is more readable. However, I reserve the right to spell or use any word however I choose in this post or any future postings. May the power of context be with you. ***

For those of you that may not have been following from the beginning, Meredith was diagnosed with having a large VSD. This is a hole between the chambers of the ventricles. Since the original diagnosis (and after leaving the hospital) Meredith has had 2 echos at Primary where the doctors never questioned the diagnosis. We sent her last echo from Primary to Cleveland for Dr. Mee to review, and he agreed with the diagnosis of a VSD. Then, we went to the Cleveland Clinic where Meredith had another echo and the diagnosis of a VSD was not questioned. I do not know how many people looked at her echo in Cleveland, but I do know that practically the whole cardiology team looked at it at Primary and they all came to the same conclusion. Then, in surgery, Dr. Hawkins discovered that there was no VSD to begin with. Don't get me wrong, not having a VSD is a good thing in that it will increase the chance that Meredith will not have a pacemaker. However my question is: How did so many people miss that?

No one is sure at this point (at least that they are willing to share), but I have 2 hypotheses - one from God the other from Man.

1) We will start with the one from God first because it is easier to explain. If you do not believe that God is a God if miracles you can skip to the next explanation if it do ya.

The explanation is that God healed the VSD through the power of faith as demonstrated by the priesthood blessings Meredith has received and the many people who have been praying and fasting and praying and pleading and praying.

2) The explanation from Man is really a guess, because even now as Puchalski (Meredith's cardiologist) went back and reviewed the previous echos he still saw what he saw and would still say that she had a VSD (were it not for the physical verification in surgery that she does not).

First, let me talk a little about the echo. You may have seen on some TV show where the doctor takes a picture of the heart and that is placed on a computer screen as a 3D model and the Dr. can then use the computer to do a virtual surgery. That may exist on some level, but that is not how an echo works, or an MRI for that matter. An echo takes a "picture" of a part of the body (the heart) from a specific angle. This picture only takes in what is in the echo wands path. Think of it as taking a stick with a camera on the end and pointing it at your heart, but the lens has tunnel vision and can only see what is exactly in front of it. The echo tech does this from many different angles to try and see certain things. When the Dr. looks at the echo he is really looking at snapshots of different parts of the heart.

Now let's talk about the "picture". While watching an echo, if you did not know what you were looking at, you might think that you were watching a black and white picture of molten lava flowing around in a pool. The tech can get some color, but it is limited to red or blue. These colors are supposed to show which way the blood is flowing. Now, to the hypothesis as to what everyone saw and thought was a VSD.

Again, the VSD is a hole in the heart between the ventricles, which are the pumps of the heart. The echo cannot actually see this hole, instead what the Dr looks for is flow between the ventricles - which they saw in Meredith's echo. Puchalski (who was completely dumbfounded) stated that the septum wall - the wall between the ventricles - may have had a little pocket in it that allowed the right ventricle blood to pass onto the left ventricle’s side of the heart, but still stay in the right ventricle. This was pure guess work on his part and only an attempt to explain what may have been the case. There is no way to prove it at this point

So there you have it. If I learn any more that would help to clarify position #2 I will surely post that. You can take a guess as to what I think happened.

-Chip

Surgery is Over

Meredith is out of surgery and has been moved to the PICU. Overall she is doing well. The plan is to keep her sedated and comfortable for the night to give her body a chance to recover from the shock of surgery. An interesting note: Meredith did not, and subsequently does not, have a VSD. We had been told by cardiologists both here and in Cleveland that she had a VSD. However, upon visual examination she did not have one. The best explanation I have been given so far is that they do not know. I have not yet spoken with our regular cardiologist, but expect to get some sort of an explanation from him.

-Chip

Surgery is a Go

We will arrive at the hospital tomorrow about 6:00 am. Meredith's surgery is set to begin about 7:30 am. I may update the blog during the day (the surgery will take all day) but will definitely post after the surgery is over and she has been moved to ICU.

-Chip

Still Healthy

As of this morning Meredith does not appear to be ill. We are going to her pre-op today where they will do a full workup to decide if she is fact healthy. If all goes well she will have surgery tomorrow.

-Chip

Getting Closer

Well we are approaching Meredith's next surgery date, Tuesday the 13th. For those of you at home who are keeping score this is her third scheduled date and we have changed playing fields from Cleveland to Salt Lake City. Meredith has recovered from her last illness and has not *yet* picked anything else up. One of our friends donated some surgical masks (Thanks Nan) which we have been requiring coughing/sniffling children to wear when they are in the vicinity. The truth is keeping Meredith healthy is hard. It is winter. and we have 6 other children, all of whom attend school and presumably interact with other germ carrying children. We use sanitizer around the house religiously, have banned virtually all visitors, and the only place Meredith goes is in the car when Stephanie has to run the kids around. The next step will have to be a plastic bubble, but that would only be fun if she could play trivial pursuit. In recognition of these difficulties for Meredith I have composed a song without music.

Meredith, shining star
Working hard, Working hard
Eat and poop and fart and laugh and play and talk and sing and
cry
Being you is very hard

Admittedly it is not a very long song, and truthfully I just composed it as I sat here and gave it very little thought. However, I think it still rings true.

We have a very busy weekend planned but if something develops, ie Meredith gets sick again, I will be sure to let you know.

-Chip

More Sickness

Meredith decided on Wednesday that she was not very interested in going back to Cleveland. She began running a fever and spent most of the night throwing up. She has now stopped throwing up, but she still has a low fever and diarrhea. Even if she were to stop having symptoms of being sick right now, she would not recover to her full strength in time for the surgery. We will not being going to Cleveland.

As a backup, we also had a date of December 13th scheduled for surgery at Primary Children's. Hopefully she will have fully recovered and not have contracted anything else by then.

-Chip

Back to Cleveland

After much deliberation, prayers, and consideration, we have decided that we are going to head back to Cleveland for Meredith's surgery. We will leave next Sunday, go through pre-operation on Monday, and have the surgery on Tuesday. Although Meredith appears to have kicked her current cold, all of this is still dependant on her staying healthy.

We are going to try and get a room at the House of Ronald, but we may have to stay in a hotel for a night or two depending on the waiting list.

-Chip

Decision Time

Today Stephanie spoke with Dr. Hawkins, Meredith's surgeon at Primary Children's. They discussed Meredith, as well as how Dr. Hawkins does the double switch. I did not know this, but apparently Stephanie did because she knows more about Meredith's condition than anyone else save God himself, but there are several different methods that are used to accomplish the rearranged blood flow through the artia. Dr. Mee uses the Sening (sp?) procedure while Dr. Hawkins uses the Mustard. There is another prominent surgeon (I think his name is Hanley) that uses another procedure that I can not remember the name of. So they talked about the various differences in the procedures and what would be best for Meredith. Although Dr. Hawkins has not done as many as Dr. Mee, it is a procedure he does on a regular basis - he did one just this last month - and has not had any fatalities. They discussed Meredith's cold and he agreed that no way would he have operated either and taken the risk.

So now we have to decide. We know Dr. Mee is very good, but we also believe that Dr. Hawkins is quite capable and we also like Dr. Hawkins. When we decide, you the reader, will be the first to know (after we tell other people of course).

-Chip

Going Home

Meredith's cold has not improved, and she now has an ear infection. They cannot operate until these get better. We have rescheduled for December 6, 2005 with Dr. Mee; this will be our last chance to have him do the surgery. We will be exploring all of our options between now and then. Thank you again to all of you for your thoughts and prayers.

-Chip

In the House of Ronald part II - The Quest

Meredith seems to be doing better. She does not have snot running out her nose, although she is a bit congested, and her fever has not returned. This morning she was still a bit gaggy when Stephanie tried to nurse her. She has generally been in good spirits. We also figured out that she had not pooped for many days – although she had not breeched the record held by our oldest, which was 9 days. This morning I set out on a quest to locate some suppositories.

Let me preface the rest of this story with a little background, and another story. The area of Cleveland where we are is no suburbia. There is no Wal-Mart, McDonalds, or even convenience stores near by. We did some grocery shopping a couple of days ago at an upscale market when Steve and Toni were still here with their car. To reach any of the comforts of suburbia is a 15 minute drive - we do not have a car and taxis are not cheap. Finally, we have been advised that we should not be out walking after dark. Such is the state of the area.

I was going to take the bus to Wal-Mart yesterday to get some supplies, but the bus stop was about half the distance to Wal-Mart and I decided against that. Fortunately, I discovered (by reading in my welcome to the Cleveland Ronald McDonald House handbook) that there was a Rite-Aid pharmacy within a couple of blocks. For those of you that are not familiar with Rite-Aid, it is comparable to a Walgreens or Osco Drug.

So on a brisk autumn day, I began my quest to find the Rite-Aid. I had an idea where it was (I had been given this odd thing called the "address", something I was not used to using when searching for a location previously)and set off. As I strolled down the sidewalk I realized that the Cleveland Clinic is more than just a single building hospital. I walked past several buildings, each big enough to be a hospital in and of itself, which professed some affiliation or another with the Cleveland Clinic. As I was strolling I came upon what I would call a shopping center. It consisted of 2 local restaurants (one Indian and the other claiming to serve Chicago style fair), a bank, and a medical supply store. It also had a sign telling me that the Rite-Aid which I was seeking was behind this shopping center. As I began my stroll around the building, a man, weaving about 40 feet behind me, asked me to stop. I can only assume that he wanted to discuss the current state of world politics, but as I was on a quest I shunned his invitation and picked up my pace around the building. As I came around the corner of the building I was much relieved to see the Rite-Aid. For as King Arthur had searched for the Holy Grail (what is your favorite color?) and came up empty, I had found the goal of my quest, the Rite-Aid drugstore.

As an aside to the story, I know you really want to know how Meredith is, I will tell a brief tale of elation and disappointment. As I prepared to exit the Rite-Aid, I noticed that behind it, there was what appeared to be a convenience store. Now as I have already divulged in this post, I have yet to find a convenience store, so you can imagine how this ends. Anyway, I was delighted because the only cups I could find to drink out of were 8oz Styrofoam cups, and I wanted something with a larger capacity. As I approached the door a young man with a hood pulled over his head (and eyes) exited the door. I thanked him for holding the door and peered inside. I was disappointed to find it was merely a sheltered place to pay for gasoline. I shut the door and turned away, heading back around the Rite-Aid on my way back to "home". It was interesting to note that said your man with the veiled eyes walked about 200 feet before getting into a waiting car with other young men. Of course I have my suspicions, but my new quest was return "home" alive so I averted my eyes and pressed onward. The return was uneventful, so I will not detail it only to say the quest was one of elation and disappointment, success and failure.

So, this morning, when Stephanie and I decided that if Meredith would poop she might feel better, I again set off for the Right-Aid. Since I knew where I was going it did not take long to get to the Rite-Aid, obtain said merchandise, and return "home". Apparently the idea of having a little glycerin capsule inserted in her anus scared the poop out of Meredith. When I returned, Meredith had not only pooped, but had blown out on her clothes as well. The whole room stunk so bad that we had to prop open our door (the windows do not open).

So overall I think that Meredith is doing pretty good. We continue to pray for her good health and for God’s will to be done. We appreciate all of the many prayers, from those of you who we know and those we don’t, that have been offered on her behalf. We have any early morning appointment at the hospital tomorrow (Friday), I will post afterward.

-Chip

In the House of Ronald

We were able to get a room in the Ronald McDonald House last night. It is a nice facility. You might think of it as a hotel room with communal laundry, kitchen, and television. It is mostly staffed by volunteers which are generally friendly. One of the best perks is that the Hospital is within walking distance, and there is also a shuttle to the hospital if we would like.

I wish I had better things to say about Meredith's health. After we left the hospital on Tuesday Meredith developed a fever, a cough, and also began throwing up. She has kept down food intermittently and continues to cough. However, as of this morning she did not have a fever. Of course this is all very frustrating, scary, and discouraging - but it is a matter of faith.


-Chip

Best Laid Plans.....

Meredith's surgery has been postponed until next Tuesday. We arrived at the hospital and she had a cold. Because she will be on bypass there is an increased risk of post-operative swelling due to the extra anti-bodies her body is creating to fight off the cold; this was a risk the surgeon was unwilling to take at this time. It is probably for the best. Once we got back to the hotel Meredith began running a fever and throwing up. However, she appears to be feeling better today so far.

We are on the waiting list for the Ronald McDonald House and hope to get in today or tomorrow.

-Chip

Off We Go

I was able to wrap up most of what I wanted to do at work yesterday by noon. I am lucky to have an employer who is so understanding of my situation. Here on the home front we crashed last night before getting packed, but we were able to get that done this morning. In about 10 minutes we are going to be leaving for the airport. We will be flying Delta (thanks to Stephanie's mom Toni) and will arrive about 6:55 Cleveland Time. We will be taking a taxi from the airport to the hotel. The whole family is quite anxious but in good spirits.

-Chip

Preparations

We are making preparations, preparations for war.

At least it feels that way, although we are not searching for any mythical weapons of mass destruction. We are trying to get the home (and for me my work) in order so that we can leave things in a relatively organized manner. The theory behind this is it will make it easier for those who are covering our jobs while we are gone, and things should be more organized when we return, although I have no evidence that this is actually what will happen.

It just so happens that many - I can't really keep track of exactly who - of my children have developed colds. Therefore, they are not allowed to love on Meredith or get too close to her, which is the exact opposite of what they want to do. Stephanie and I have both developed a heightened level of freaking out and are greatly anticipating our trip and all that will go with it. We leave on Saturday morning, and will be staying in a hotel (thanks to my Dad) until we can get in at the Ronald McDonald House. I am not sure exactly where I am going to find web access to post updates, but I will find it somewhere.

As you await the next post with anticipation.....OK I was going to suggest something here but I am quite tired and I was unable to put a coherent thought together. Peace.

-Chip

Making a Donation

Many people have inquired as to the cost of us traveling half way across the country for Meredith to have a complicated heart surgery with a protracted hospital stay. Although we have insurance, it will not cover many of our expenses. We would be grateful to anyone that desired to make a donation to help us defray these extra costs.

If you would like to make a donation to help us cover Meredith's medical expenses we will accept your donation through the mail, or we are accepting donations through PayPal.

I just found out that my PayPal link is not working for some reason. I will try and fix this, but in the meantime you can send your donations through your PayPal account to jackroyal@gmail.com.

-Chip

Things are moving fast now!!!

We found out yesterday that Meredith's surgeon, Dr Mee, is retiring and is only doing a few more surgeries. Since he had already agreed to do Meredith's surgery he said he would do it before he retired. After looking at her echo and other information he stated that he was concerned about the size of the PA band - that it had not really tightened as expected - and that he thinks we should do the surgery now. So we have scheduled it for November 1, 2005. If you would have asked me 3 days ago when her surgery was going to be I would have said next spring, and I would have been wrong.

-Chip

Another Echo

Today Meredith had another sedated echo. The echo showed pretty much the same thing it did last time. Her PA band has tightened a little, but not very much. We spoke with her cardiologist who will be consulting with Dr. Mee regarding a date for surgery. Hopefully we will know in the next month or so.

Chip

Surgery Update

First I will report that Meredith had a good time in Oklahoma and even asked me when she got back "Why do we live somewhere where big piles of dirt block our view? In Oklahoma I could see forever and it was great!!" I of course was unable to explain, because it is beyond explanation.

Meredith went to her first Sacrament Meeting last week. It is the first time she has been around so many people so there was plenty for her to look at.

Regarding her surgery, we have decided to have Dr. Mee of the Cleveland Clinic perform the surgery. We do not know when it will be exactly, but sometime in the next 4-5 months was his best guess. We have prayed and believe that this is what will be best for Meredith. In the end, it was a bit of a no brainer. Although Dr. Hawkins is an excellent surgeon, Dr. Mee practically invented the surgery that she will be having.

-Chip

Travel Time

After doing more research Stephanie and I decided to get a second opinion on Meredith's heart, and the best surgery for her. We sent copies of her records to Dr. Roger Mee at the Cleveland Clinic in Ohio. He has done the most double switch surgeries in the United States. Given that the double switch is one of the most risky surgeries we really wanted a second opinion. The double switch, if successful, will give her the best long term prognosis. However, there are other surgeries that have a lower initial risk but not as good of a long-term prognosis. The stress and pressure of making the right choice is immense.

As I type this Stephanie and Meredith are in Oklahoma visiting relatives. This trip was prompted by the fact that some of our relatives may not ever get to see Meredith, they may die before we get back out there or Meredith could die during or after her surgery. Lucky for me I have 2 great sisters close by that are chipping in to help me with the rest of the kids. However, it will be a lonely week without 2 of my favorite girls!

-Chip

Appointment

Today Meredith went for the first echo that she has had since she was in the hospital last August. The goal of today's appointment was to see exactly how much her heart had grown and begin planning for whatever surgery will best for her. Stephanie and I arrived early, which really worked to our advantage. We were able to get in and out in about 2 hours, which allowed me to get to work sooner and allowed Stephanie to get back to Kaysville and pick up the kids from school.

As far as the appointment itself, it went pretty good. Dr. Pulchalski said that her right ventricle has grown and that she looks to be a good candidate for the double switch operation. This will give her the best chance to lead a "normal" life. They will do another echo and possibly an MRI before making a final decision - this will happen in about 4 months with surgery happening close to her one-year birthday.

I looked for a good description of the double switch operation and came away wanting. The best I found (in my admittedly brief search) was the following description from the British Heart Foundation :

In this operation, the left ventricle is tunnelled to the aorta through the septal defect, a conduit (tube) is placed between the right ventricle and the pulmonary artery and an atrial 'switch' is performed.

New Pictures

At the request of several people, I have posted a few new pictures of Meredith on the pictures page. Looking at her it is impossible to tell that she has major health problems.

-Chip

Doing Good

Last night we had a bit of Panic and ended up running Meredith to the ER. She had a slight fever and was not acting herself. It turns out that when babies have a slight fever they very often do not act themselves. As a parent of 7 you might think that this was knowledge I would have been able to apply before panicking, but I did not.

Meredith had an appointment with her cardiologist and he said that she is doing excellent, better than expected even. If she continues to grow at this rate - and stays healthy - she may be able to put off her surgery until she is closer to one year. We of course are very happy about this news.

The doc also talked about a possible 3rd surgery option, which would be to close her VSD and let her right ventricle pump to the body and the left to the lungs. He said that there are people walking around with this condition in their 50s. It is nice to have another option.

-Chip

Appointment

Meredith had a follow-up appointment today with the cardiologist. After four hours and many tests later here is the skinny. She is doing as well as she can be. Her PA band is tightening (which shows that her heart is growing), she has gained 4oz in the past week, and the condition of her ventricles has been upgraded from fair to good. She is also going to stop taking 2 of her medicines, but I can't recall which ones. Of course, she has retained her major plumbing problems.

-Chip

Not Much Change

Not much has changed since my last post. Meredith is eating – and pooping – on a regular basis and as long as she continues to gain weight at an acceptable rate we will not need to supplement her diet.

We are very conscience of the possibility of her getting sick so she remains on a quasi-quarantine status and we have been enforcing the use of hand sanitizer in our home. What this means is she does not have contact with large groups of people in enclosed spaces (no stores, church, etc), and no visitors to the house that have any signs of being sick or have been recently exposed to sickness. We issue "protective orders" on her behalf against our children who appear to be getting any sort of sickness, they are not allowed within about 5 feet of her until all signs of sickness have abated. It is harder for the younger children to understand, but they are working on it. You may think these steps sound extreme, but I assure you given the alternative (Meredith back in the ICU) they are not.

Meredith goes to the cardiologist this week, I will post an update after that visit.

-Chip

What a Month

It was one month ago today that Meredith made her first appearance in her new body here on earth. Looking back it seems both like it was yesterday and like it was years ago. I will be posting updates after doctor visits. Unless she goes back to the hospital I will not be posting daily until her next surgery. I will, however, try to make some updates on the picture page.

Chip

Home

Meredith went home this morning. Although it is scary, we are glad to have our family all back together again.

-Chip

Wire and Tubes

I stopped by the hospital this morning on the way to work and happened to catch the doctors doing rounds. They decided that today Meredith would loose her pic line (IV), her feeding tube, and her monitoring equipment; in other words she is free! Basically Stephanie will just take care of her in the hospital today (her nursing continues to improve) and if all goes well Meredith will go home sometime tomorrow.

This will begin a whole new adventure as our lives will never be the same again. Of course we will be worried that she might drop dead at any moment, although the doctors have assured us that is not likely to happen. We will also have to basically set up a quarantine at the house - no visitors with any sign of any sickness can be let in. Due to her heart condition she will be very susceptible to any illness and will likely require a hospital stay to help get rid of anything she catches.

Big Thanks

I just wanted to take moment and recognize some of the people who have been unbelievingly helpful over the past two weeks.

Our biggest thanks goes to everyone who prayed, fasted, put Meredith on their church prayer lists, and generally appealed to some sort of a higher power to help Meredith recover as well as help the rest of our family deal with the stress associated with Meredith's condition. It is only through God's grace that Meredith is doing as well as she is today.

Special thanks also goes to my family for all of their support, especially my sister Kim and mother-in-law Toni, who took care of the business of running our household (no small task let me assure you) so we could spend time at the hospital with Meredith. Thanks also to the Kaysville 11th Ward, for making sure there was plenty of food in the house and helping get my kids ready to start school. Thanks to my boss for being so understanding and giving me all the time off I needed. Finally, thanks to Cris, Leslie, and Shelly for helping us to finish unpacking the basement and children's rooms.

So may people helped in so many different ways and we are very appreciative of all the help that has been given, even if I forgot to mention it specifically.

-Chip

Counting Down the Days

Meredith is continuing to improve. She is currently taking the same medicines at the same dose as she will when she comes home. Her nursing stamina is also growing, which is a very good sign indeed. The cardiologist said that at this rate of improvement she could come home as soon as a couple of days. This weekend I have spent with the other children and Stephanie has been camping out at the hospital. We are very much looking forward to living as a whole family again.

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-Chip

Got a Room

Today Meredith was moved to the floor and has her own room. It has a nice a view of the valley, a television, its own bathroom, and most importantly, it is right next to the nurse's station. Nobody was willing to speculate as to when she would get to come home, but we at least know that she is closer today than she was yesterday.

-Chip

Tweaking

Meredith is still doing ok after her little episode yesterday. She has an infection and is being treated for pneumonia, although they have not confirmed that as a diagnosis. We also found out yesterday that Meredith also has an ASD. This is like a VSD but in the atriums instead of the ventricles. Apparently many people have one without it being an issue. Hers has become more pronounced as her left ventricle is now working harder to pump the blood past her pulmonary artery band. The main thing holding her back from going to the floor is her high respiration rate. Once this is under control we should be going to the floor.

-Chip

Rough Times

This morning Meredith was doing ok so they let Stephanie try and nurse her. She nursed for a short time and then Meredith was just too wore out. About this time her stats starting getting worse, they have been having trouble controlling her breathing rate, and they decided to do a CPAP. This is a thing that sticks in the nose and forces air down into the lungs. Well that really pissed Meredith off and her stats started getting even worse. They even had the intibation cart ready just in case she really went south. Finally they went back to giving oxygen via the nose (like you see on folks in the movies) and all settled down. Meredith will not get to try nursing again for at least 2 days.

The good news is that her lungs are sounding better - not great, but better.

-Chip

Getting Better

I am back at work today and will be posting on Meredith's condition with information from Stephanie. Meredith is doing about as well as she was yesterday. She is up and down but overall she is going up. Her white blood cells are up, but there are no other signs of infection. Nonetheless the Dr. is going to put her on some antibiotics. She also continues to have some crackling in her left lung; they are trying to control this using diuretics. Meredith had an echo cardiogram this morning and everything looked as expected (I can't really say ok since her heart is still very messed up). The band on the pulmonary artery is a little loose but that will give her some room to grow. The cardiologist said that she may get to go to the floor (out of ICU) tomorrow or the next day.

-Chip

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