The Olvers in Dallas

A belated update

2009-04-18T08:23:00.000-07:00

Many of you have told me how you are checking the blog for an update and you have found NOTHING! Forgive me.

Our last update was when Claire came home for the second time, on Good Friday morning. The weekend was full of blessings. My duties at the parish were relatively light and, for the end of Holy Week, we were able to spend a good deal of time together as a family. Kristen's mom, Kathy, was with us and was a great blessing to us as we adjusted to being back at home. Claire was visibly so happy to be home, and was also incredibly sweet. She was in the Holy Week spirit, walking around and telling people that "Jesus died for me!" On Easter morning, she asked Kristen "where's Easter?" to which Kristen responded that "Easter is everywhere." This too she proudly proclaimed to anyone who would listen.

Monday was a difficult day. On the way home from showing Kathy our new house (closing date April 28), Claire vomited a few times in the car. In addition to being a real mess, it concerned us and so we spoke with the surgeon's nurse practitioner, who wanted to see us. After all the perfunctory tests, they told us that everything looked good. Not only had the fluid remained down in her chest and lungs, but her liver was working well and her electrolyte levels were still good in spite of the high level of diahretics. Nonetheless, the dosage was too high and had made her sick, so they cut out one of the diahretics (she was on two adult doses of two different medications each) and that seems to have done the trick.

Claire is getting back to herself and her personality seems much more like the normal Claire. She continues to say funny things. The latest was when she solemnly explained that I was like Gusteau, the chef in her new favorite movie Ratatouille, and that mom was not (I do more of the cooking, so I don't think it was a comment on Kristen's skills generally - trust me, they're quite good!). There's nothing like being compared to an extremely fat French chef who has no neck (see here).

These days we're gearing up for the move, which is in less than two weeks.

With thanks for all your support. And happy Easter!

Round 2 - The Last Day! (Good Friday)

2009-04-10T08:54:00.000-07:00

I am sitting here at the parish preparing for the Good Friday service. Before I got here, I helped pack up Kristen, Kathy, Isaac and Claire in the van and sent them on their way back to our house.

Claire's home!

Claire and I were snuggling on the couch this morning when her doctor came in and told that her x-day looked gorgeous and what time was the Good Friday service so that they could get us out of the hospital in time. Claire got all dressed up in a dress and her new snazzy shoes (see yesterday's pictures) and skipped around the floor as we packed up all our things. She goes home with a much higher dosage of the diahretics, but it seems that they are working very well and releasing all the excess fluid. Praise God!

This will be a joyous Easter, to be sure. And what a Good Friday. We have known the power of the Lord's mighty death in our lives, the saving power of his sacrifice. Thank you for your prayers.

Behold the wood of the cross, whereon was hung the world's Salvation.
O come let us worship.

Round 2 - Day 3 (Maundy Thursday)

2009-04-09T10:20:00.000-07:00

Today begins the Sacred Triduum (the three Sacred Days in the Church year) and as we put ourselves in mind of our Lord's great love and sacrifice in his Passion, and we are rejoicing in God's provision to our family. Claire's cardiologist on the floor (who happens to attend St John's, where I served as a deacon) came in this morning and told us that her x-ray looked beautiful. And then a series of doctors and nurse practitioners all filed in over the next hour, smiles on their faces, hoping they were the first ones to give us the news. She's been getting rid of lots of fluid; in fact, she lost a kilo (1 liter) of liquid between Tuesday and Wed. I spent the night and I think I chaged four diapers last night, all of them very full. Strangly, this stuff doesn't work gradually: once she gets the diahretic, it works all at once and quickly. But they mean recovery and we'

Kristen's mom, Kathy, arrived last night from Washington. Claire is so excited to see her grandma and her presence has been a great comfort and help. She arrived bearing gifts, in good grandparent-style, including not one but two pair of shoes (see the way-cool Crocs above). We're working on getting some more pictures, but we're rather slow. We look a plethora of pictures during the first round, but I think we're in a little denial this time and are expressing it by not marking the moment with photographs. These are grandma' pics, for which we're grateful.

Thank you for your prayers, which many of you continue to offer on our behalf. We still have a few more days here - Holy Saturday will likely be our day to travel home - and we will be immensely relieved to have all of this finally behind us.

A blessed Triduum to all of you. I'm sad to miss Maundy Thursday tonight at Church of the Incarnation, which will be beautiful and moving as always (my sincere thanks to Fr Philputt for preaching in my place this evening). I will be able to participate in the Good Friday liturgy and also have the privilate to baptize four individuals at the Great Vigil on Saturday evening, including an adult whom I have been preparing for a number of months. If you are looking for a place to celebrate our Lord's Passion and are in Dallas, I hope you will join the good people at Incarnation over the next few days (click here for a map and a schedule).

God bless you all.

Round 2 - Day 2

2009-04-08T07:51:00.000-07:00

Good news this morning: Claire's x-ray looked better than yesterday. The fluid has gone down some and so the diahretics are working as they should. I had a pretty good night with Claire last evening. She didn't sleep great, but she slept as well as could be expected for a first night back in the hospital.

Kristen's mom has kindly offered to come and give us a hand and we are incredibly grateful. She'll arrive tonight and with us for almost a week. This means I'll be able to participate in at least some of the Holy Week services. They're telling us that we could go home on Saturday in time for Easter. At this point, we want to stay long enough so that we don't have to come back, but Saturday would be fantastic.

This probably isn't too cogent, but we wanted to give at least a brief update. And Praise God, the news is good.

The Hospital - Round 2

2009-04-07T17:55:00.001-07:00

This is the not the post I was hoping to make this evening. But before I let you know what transpired today, I should let all of you know that we had one unexpected return to Children's last Friday because of a little oozing from the lower part of her incision sight. All they had to do was take off the lowest of the steristrips over her incision and clean the area (and have us do the same for the next few days) and all was well. She hated us putting the iodine on the wound but it continued to heal quite well (these photos are from the day after she came home, last Thursday).

The family got up early this morning to head back to Children's for the scheduled surgical follow-up visit. The first sign that things were not right was when her oxygen saturation was coming in at 71, which was 10 points less than what it was when we left the hospital. And those numbers were supposed to be slowly going up, not dropping. Then the nurse practicioner came in with a less than cheery grin. The x-ray showed a significant build-up of fluid, particularly around her right lung. This meant that she was taking shallow breaths and thereby taking in less oxygen, hence her lower saturation. She would have to be readmitted, they said, for a minimum of fours days or so. They are putting her on two different diahretics via IV, which they hope should flush out all of the excess fluid.

This is not really the best week for all this, as you probably know. Holy Week is the busiest week in the church and it was with a heavy heart that I passed off preaching on Maundy Thursday to one of my kind collegues. But, we have a much bigger room this time, a view of the downtown skyline, and a bigger bed for me to sleep on! So not all is lost.

Your prayers are welcomed with grateful hearts.

Day 8 - Wednesday, April 1

2009-04-01T07:42:00.000-07:00

We're going home today!

The docs did their rounds this morning and told us that everything looks good. She still has a very, very small pocket of air in her lungs, but they said that this will work itself out in a few days. She's off oxygen and her stats are still quite good.

She goes home with just over the counter pain medications, the heart medications she was on before we came to the hospital, and one diahretic to make sure that any excess fluid gets flushed out of the body.

My parents head back to Pennsylvania today, something that causes all of us some sadness. They have been more than help than they will probably know. My mom was hear from before the heart cath and it provided a real breathing space for Kristen especially as we prepared for the surgery.

Ahh...to sleep: perchance, to dream.

With joy and thanks,
The Olvers

Day 7 - Tuesday, March 31

2009-03-31T06:12:00.000-07:00

The chest tubes are out! Te Deum!

The picture here is of Claire and I walking back from having taking a ride in the elevator down to the 4th floor Troy Aikman play room. She's sporting a pretty exciting blue purse that holds a pocket-size version of her monitors and some custom Children's PJs. In the photo she was stilled hooked up to oxygen, but she was weaned from that last night, so she's off that as well.

The chest tubes were taken out around noon yesterday and the x-ray that they took about 4 hours later showed her lungs to be totally clear without any significant fluid build-up at all. Praise God!

PopPop spent the night for the first time last night and they had another great evening (thank you!). Our favorite night nurse Alison was again adept at getting Claire to take her meds.

This morning is the post-chest-tube-removal echo that is the final check to make sure that all is well. They tell us that we likely we make the trek home tomorrow, which is great because my parents have to return to Pennsylvania tomorrow.

We'll try and get some more pictures today for all of you.

Thanks agian for your prayers.

Day 6 - Monday, March 30

2009-03-30T06:15:00.000-07:00

Great news (Claire's really excited, as you can tell)! We just spoke with one of Dr Forbess's nurse practitioners who told us that Claire will have both of her chest tubes removed today. They told us that kids who haven't wanted to moved much at all will go running out of the procedure room once their chest tubes are removed. When Dr Forbess performs a heart surgery, he puts sutures around the chest tubes so that when they are pulled, the sutures are simply pulled tight like a knot and the opening is easily closed. Of course, they will give her some pain medicine, along with numbing medication, before they do this procedure. But it's got to be a weird feeling to pull out at least a full foot of plastic tubing that is wrapped around the inside of your chest cavity. Claire is most excited about going to the play room to meet some kids and play with some new toys.

Her Nana stayed with her last night (thank you mom!) and she had another great evening. Her same, wonderful nurse Alison was with her last night (and will be again tonight) and she is fantastic with Claire. In fact, she is able to get Claire to take her meds better than anyone. Claire has been fighting taking her medications my mouth (even ones that she regularly takes at home). It's one of the few ways that she can exert control, and so she takes advantage of it. She made herself throw up last night while we tried to get her to take her evening meds, and that scared us a little. But it means that her pain must not be too bad since she's willing to go without any strong pain medications.

We're sitting her waiting for her pancakes to arrive. Sessame Street is back on PBS now that the weekend's over, so Claire pretty engrossed.

The chest tube removal should take place around noon, so your prayers are greatly appreciated.

Day 5 - Sunday, March 29 (7 a.m.)

2009-03-29T05:01:00.000-07:00

We've been lazy on the photo front, so I hope you'll forgive some day-old pictures. Claire got her first joy ride in the wagon and as you can see, she's looking much, much better. Isaac has also been a real champ. He's the one who's really gotten the brunt of the hospital stay, not having had a nap at home since the surgery started. He usually sleeps in the stroller as one of my parents go searching for a pleasant place in the hospital to stroll and relax.

Last night was probably the best night so far (actually for the whole family - Kristen said that is was probably her best night of sleep since Isaac was born). Claire was able to sleep in large chunks between meds and vital sign checks. We had a great time last night talking and singing. When her new nurse (who was simply wonderful, and with a South African accent to boot) arrived to help get her bed cleaned up after a messy diaper, Claire just help up her icon of Jesus and sang songs to Him. Our nurse was a Christian and reminded Claire a number of times that Jesus is always with her.

A great blessing yesterday was to meet one of Claire's nurses from her very first hospital stay, Brooke, who is now a nurse practitioner and who is taking care of Claire while she's on the floor. Brooke was really wonderful with Claire as an infant and our day was brightened by seeing her. She and I spoke yesterday about Claire's prognosis over the next few days. They split her chest tubes yesterday so that they could measure the output from each tube separately. One is producing much less output and so it is likely that one can be removed today. The second tube needs to reduce to about 50cc of output in a half a day before they can consider removing it. It is possible that they could remove the second one tomorrow, but more likely on Tuesday. Once they are both out, an echocardiogram will be performed to be sure that there is no significant levels of fluid in her chest cavity. Once that happens, we're free to go.

Thanks again for all your prayers.

Day 4 - Saturday, March 28 (10 a.m.)

2009-03-28T07:54:00.000-07:00

Apologies for not posting anything yesterday; there was a lot of action! Mid morning, Claire was freed to move up to the cardiac floor in the tower's eight floor. Both arterial lines were removed (one in her neck, the other in her wrist) and she was given the freedom to get out of her crib. The 8th floor is huge upgrade from the ICU: unlimited number of visitors; an actual bed for us to sleep on; Isaac is allowed to join us and we can set up an pack and play for naps and playing; we can bring food; we have our own bathroom; and probably best of all for Claire, she had a DVD player.

While it was great to move up, the morning was difficult for Claire. She was feeling pretty down and wasn't talking very much. She was able, however, to get a great nap in the afternoon, which made a world of difference in her mood. The doctor's have ok'd her for regular food for which she's had no complaints. Now that her personality is beginning to shine through, she's exercising her will in trying to refuse her oral meds, especially when Kristen and I are around.

Last night's dinner was a lot of fun. We brought in one of the fabulous meals provided by member's of the Altar Guild at Church of the Incarnation (for which we are incredibly grateful!) and we had a big party.

My mom, Claire's Nana, spent the night last evening and had a sleepover with her granddaughter. Kristen and I were able to sleep at home, a real gift.

As you can see from the pictures, the bandage over her incision is removed and all that remains are the Steri-Strips, which will fall off in a few weeks or so. She still has two chest tubes which exit the upper belly area and drain away the blood and other fluid that continues to gather around the heart. She is sitting up much more, which helps with the drainage. The more she can get out and take rides in the red waggon, or even walk, the sooner the chest tubes can get out. The surgeons get to decide when the chest tubes come out, though it's possible that it could be today if the output is below 50 cc.

Thank you again for your prayers. My parents continue to be a huge blessing to all four of us and our thanks is profound.

Matthew +

Day 3 - Friday, March 27 (6:20 a.m.)

2009-03-27T04:02:00.000-07:00

Claire and I had a wonderful night last evening. Things could not have been more different than the night before.

Her nurse and I gave her a little sponge bath early in the evening, which she received with a little trepidation. She then felt asleep and slept peacefully from around 8 p.m. until almost midnight and I was able to hang out with a good friend and pray Compline together. Her arterial line has continue to ooze blood, which isn't dangerous at all, just messy. The dressing on that ended up having to be changed twice last night, and Claire was quite peaceful for it. She slept peacefully again until 1:30, when she woke up rather agitated. She was missing her mom and got herself worked up a bit, but I saw the Claire I know shining through. She actually threw a mini temper tantrum, and this may be the only time I'll ever be thankful for one. She was fighting and coming more and more back to herself, for which we give thanks.

She continued to take clear liquids by mouth throughout the night and she tolerated them well. I woke up when they came in to take her daily x-ray. When I got to her bedside she told me that they had taken pictures of her and that she was very still for them. She told me all about what she remembered from last night while they changed the dressing again, and there was no doubt that Claire was getting stronger.

All of her electrolites and other levels are back to normal levels and she will likely have that line taken out of her wrist. All signs look good for her to move up to the 8th floor sometime today.

Thank you for your prayers, which we trust will keep being lifted on our behalf.

Matthew+ (for all of us)

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Just a brief note on the Daily Office reading today from Rom 8:28-39 that struck me. St Paul begins by saying that "All things work together for [the] good for those who love God." This is the kind of passage that is often read when difficult things take place and it is read to mean that something good is going to come out of the bad situation (i.e. "You may have been in this car wreck, but soon, you're going to win the lottery!"). But I think what St Paul is getting as is not some kind of ying and yang about good and evil, but about how the evil with which this world is fraught is able to be ordered for those who are in Christ Jesus. It is less that all things working to good, than it is that all things work together for the "The Good", that is, our salvation, specifically, our sanctification. Our holiness, our being conformed into the image of Jesus (i.e. The Ultimate Good) is the "opportunity" of our daily life. Life isn't a trade, where we're "owed" some good thing by God in exchange for our difficulties and trials. What St Paul enjoins on us is a perspective, away of viewing our lives such that we can see that everything is about our conversion, our turning away from our selfishness and our preoccupation our own needs at the expense of everyone else's and turning towards the cross, which is life and peace.

Day 2 - Thursday, March 26

2009-03-26T15:12:00.000-07:00

Our apologies for not getting anything on the blog earlier today.

It's about 5:20 p.m. on Thursday and I'm down in the Family Waiting Room that the Pastoral Care Department kindly has allowed us to use. This has been especially helpful since Isaac isn't allowed into either the ICU or the ICU waiting room.

I spent the night with Claire last night, which was a rather long evening. During the beginning, when she had a whole of drugs in her her, she was handing out some "Deep Thoughts" which would give Jack Handy a run for his money. My favorite was, "Mom, the trash is dirty." Never has a truer word been said.

We were able to start giving her small ice chips after hours of her asking for water, apple juice and chocolate milk, among other things. 'Asking' might be a gentle way of putting it. She tolerated them for a while and then we moved on to apple juice, which did not sit well with her. The next two hours were spent with her vomiting up all the fluid that she had taken down, along with a good deal of blood from the surgery that had been sitting in her stomach. As a result, I now have a real pair of scrubs, which replaced my clothes and which I confess are as comfortable as they appear. She had to be kept on regular doses of pain medication and and other meds that kept her calm throughout the night.

One of the big issues last evening was that some of her stats were dropping, which caused the doctors some concern. To assist, they ended up giving her some blood products in the early morning, which began to slowly bring her numbers up.

She continued to be somewhat agitated and in pain throughout the morning. Kristen took over being her comfort while I went home to rest a bit and she did a great job at keeping her as calm as possible. Another issue this morning was that her heart rate was not changing as it should: it wasn't rising as much as it should when she was agitated and it didn't drop as one would think when she was calm. This, along with the fact that she has continued to drain a more blood from her chest tubes that is acceptable to be in a regular floor, means that she will remain in the ICU at least until tomorrow.

This afternoon, they took out a line which runs directly into the heart which they used to give her some of her medications. I was able to stay with her and she was incredibly brave and strong as they changed all the bandages around the two chest tubes which come out of her chest just below the bottom of the incision. The main bandage over the chest incision will remain off from now on, and her catheter was removed, two more steps on the way up a regular floor.

We ask you to direct your prayers in these two ways:

That her stomach would continue to tolerate liquids and then foods. This will speed her recovery and also brighten her mood.
That the fluid around her heart would begin to decrease. As I think I said before, this is one of the main factors that determine how soon she can leave the hospital.
That her heart output would continue to normalize and her main, vital stats would stay strong.
For strength for all of us, especially Kristen and I. She needs to be at home through the nights to be with Isaac and I will spend the night again this evening. Also strength and blessings on my parents, who have been an tremendous and loving support and help, especially in watching Isaac so that both of us can be with Claire.

Nota bene: we are not able to have our cell phones on (or at least answer them) in the ICU, which means that we likely will not be answering our phones during the day. We're not trying to ignore you (well, maybe a little!).

This is a short video of Claire at her most verbal and lucid from earlier this morning. She had just been given some strong narcotics, so while this isn't representative of the morning, you can see her sweet personality coming through beautifully.

P.S. - While I was typing, Kristen called to let me know that Claire had taken down 6 oz. of liquid, kept is down, and is doing very well. She's watching her new Curious George video and talking with greater lucidity and normalcy. Keep the prayers coming!

The heart of Jesus

2009-03-25T13:19:00.001-07:00

Claire's godparents (and some of our most dear friends), Ryan and Darrah McDermott, send her this wonderful icon a few days before her surgery. This poem was inscribed by them on the back:

Jesus, you have me dearly bought

Write now ghostly in my thought

That I may with devotion deep

My thought on your dear Passion keep:

For though my heart is hard as stone,

Yet may you ghostly write thereon

Re-write with nail and spear so keen

So that you Letter may be seen.

-from an anonymous fourteenth century Middle English lyric

After Claire received the icon in the mail, we found her the next day marching around the house, holding the icon up in the air and singing songs to Jesus. As any of you who have seen her at church know, she loves things that are holy and have to do with Jesus and worship. One of her favorite things is come to church and listen to the choir. She stands and watches Miss Monica or Mr Berry as they conduct the choir, moving her arms slowly about in imitation of their conducting. She asked that this picture of Jesus stay with her throughout the surgery, which it did. When I was talking with her before the surgery and showing her the picture, I told her that Jesus loves her so much that His heart burns with love for her. She looked up and, in typical Claire fashion, said "Yup," as if that was the most obvious thing in the world.

Day 1 - Wed, March 25

2009-03-25T13:03:00.001-07:00

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We arrived at the hospital around 6:30 a.m. and checked into pre-surgery. Claire was upbeat and excited about her hospital stay (way more than the rest of us). She took her "goofy juice" around 7:30 and began to get more relaxed over the next half hour. We handed her over to her nurse at 8 a.m. and began our six hours of waiting.

Her nurse called us about every hour to give up brief updates. The last update came at 1:30 p.m. when they told us that she had gone off the heart-lung bypass machine and that the surgeon would talk to us in a few minutes.

Dr. Forbess sat down with us around 1:45 and told us that everything had gone exactly as hoped. In fact, he said that from the very first surgery, he could tell that she was incredibly strong and that her body has continued to respond with strength during and after surgery. There were absolutely no irregularities with her heart or lungs after she went off the heart-lung machine. They hope to take out her breathing tube by 6 p.m. or so this evening. If all goes well, she could move out of the ICU tomorrow afternoon or Friday morning to a room on the cardiac floor.

The two main things for which we would ask your prayers:

That her breathing would remain strong and that as she begins to wake up, that she would fight hard with her breathing and be able to come off the breathing tube. It is a really scary thing to wake up with a huge tube down your throat, so also pray that she will know the Lord's peace and presence with her during those hours where she's awake and before the breathing tube comes out.
The length of her hospital stay is determined largely by how much or little fluid continues to develop around the heart and lungs. Pray that the fluid build-up would be minimal and that she would do well when they begin to get her up and walking.

Thank you to all of you who sent text messages, made meals, dropped off gifts, etc. We are incredibly grateful. The hospital's pastoral care office was kind enough to allow us the use of the chapel where I was able to celebrate the Eucharist with Kristen this morning just as Claire went into surgery, which was a tremendous blessing. We had a surprising and wonderful sense of peace so far throughout the day for which we praise God.

We will keep the updates coming as quickly as we're able.

Matthew+ (for all four of us)

Tuesday, March 24: Pre-Operation Visit

2009-03-24T19:22:00.000-07:00

The pre-op visit today was filled with all the normal stuff: temp, blood draw, x-rays, EKG, etc. Claire walked through it all as if she was the star of her own TV show, which she is in some way (or at least the star of her own blog).

This is near the beginning, and the smiles kept on coming.

Miss Audrey, Claire's "Child Life Specialist," is talking through what will happen tomorrow by taking her through a story about a girl named Katy who also had a heart surgery.

Claire is checking the heart rate of the brown bear, who also showed Claire how her mask will fit on her face before the surgery (strawberry smelling, of course), and what the sticker on her chest will look like.

Before we went home, Claire and Matthew laid down on the wavy benches in the brand new tower at Children's and watched the butterflies and the shooting stars in the ceiling above us.

Pics from the March 13 Heart Cath

2009-03-24T14:06:00.000-07:00

As a preparation for tomorrow's surgery, Claire underwent a heart cath on Friday, March 13. Claire was incredibly brave and did splendidly, which isn't a big surprise. The surgeon today told us that everything inside looks as beautifully as he has ever seen in a heart patient. Enjoy some of these photos!

Matthew's mom has been with us since before the heart cath and has been an incredible blessings to all of us.

Isaac has been a champ during all of our hospital ventures.

This is a brief video of Claire sitting up for the first time after the cath. She had to stay on her back for about 5 hours with her leg flat so that the point where the cath went in would heal quickly. Her hairdo is quite stylish, something straight out of the style section of the New York Times Magazine.

Claire's Third and Final Surgery

2009-03-15T18:19:00.000-07:00

Claire's third and final open heart surgery has been set for Wednesday, March 25 at 8:00 a.m. at Children's Medical Center, Dallas.

This surgery, the Fontan Procedure, is the third in a series of three surgeries to deal with her congenital heart defect called Hypoplastic Right Heart Syndrome (click here for more information). Her surgeon is Dr Joseph Forbess, one of the foremost experts on these kinds of heart abnormalities. (If you click here, you can see a photo of the fantastic heart team at Children's; Dr Forbess is in the center-left of the photo, and her cardiologist, Dr Reenu Eapen is just below Dr Frobess is the bottom-left).

Her pre-surgery heart catheterization took place on Friday, March 13 and Claire was incredible. All the fixes from her past two surgeries (the Norwood and the Glenn procedures) looked exactly as they should and the doctors were all encouraged and positive. We will post some more details and photos in the coming days.

The encouragement and support in prayer that we received during the last two surgeries was an incredible experience of God’s grace. There is definitely more trepidation for both Kristen and I this time around and this has everything to do with Claire being older and aware of what’s going on. But we both were filled with incredible relief after how well things went this past Friday with her heart catheterization. All that to say: please keep our family, and Claire especially, in your prayers.

Matthew+, Kristen Claire & Isaac