Hi everyone,
We took Lacey to the cardiologist this afternoon. After performing his usual sonogram inspection, he immediately arranged for her heart surgery to be scheduled as soon as possible. He was even communicating with UCLA while we were still in the exam room. So her surgery is scheduled for December 13 with Dr. Laks, chief of cardiothoracic surgery at UCLA, whom our cardiologist described as "the best in the world." She would have gotten an earlier date, but she is fighting off a cold right now, and should not go into surgery with a virus.
In summary, Lacey's condition is progressing, and she is not responding well enough to her meds. She is not gaining any weight, since she is burning all her calories breathing and circulating.
As far as the actual surgery goes, we won't know what type of surgery will be performed probably until she's on the table. Dr. Laks is known for thinking on his feet, and this decision really can't be made in advance. There are a couple of options, and the details of Lacey's condition make it a bit more difficult. The right side of her heart is bigger than the left, which throws things out of balance. Ideally, they would construct the septum and the mitral and tricuspid valves, but this would be harder with the imbalance in her heart. The simplest alternative procedure would be to put a band around the pulmonary artery that would take pressure off the lungs and allow her to breathe easier; this would buy her some time to grow and get stronger before the big surgery, and hopefully the left and right sides of the heart would become more equal in size.
The common recovery time for this class of surgery is 10 days, give or take a few days. So she'll have to be at UCLA for up to 2 weeks. Of course, complications would extend her hospitalization.
Gina & I find great comfort knowing that God is sovereign, and none of this is a surprise to Him. He even knows the outcome of the surgery! And we are grateful that God continues to graciously provide wonderful medical care for Lacey, and He continues to provide for our needs.
With that in mind, here are the immediate prayer requests:
Thank you so much for your prayers on our behalf.
Love,
Scott & Gina
Dear family & friends,
On Monday we saw our cardiologist in Santa Barbara. In previous appts, he had recorded echo tests that showed that the right side of Lacey's heart was bigger than the left. At best, this would make things trickier during the AVC surgery (to repair her heart). At worst, it would make the AVC inoperable, and require a different surgery that would cause the heart to get back in balance. At least 2 of her meds are intended to keep this imbalance somewhat under control, but the doctor clearly stated that the meds would not correct the problem.
Praise #1:
On Monday, he sounded optimistic that the AVC surgery could proceed.
Tuesday morning, Lacey had some nasal congestion. If that turned out to be a cold, then her surgery would need to be postponed.
Praise #2:
Lacey's congestion was completely gone today.
We made it to UCLA safely today. We were asked to first go to the echo lab, and then go have Lacey admitted.
Praise #3:
During today's echo test, it appeared that the left and right sides were around the same size! While there is some room for error regarding how the individual conducts the test, there were 3 people performing the test at the time they took that measurement. So we are compelled to consider this "balance" a miracle, an answer to many prayers lifted up on Lacey's behalf!
After several hours, Lacey was finally admitted to the cardiothoracic ICU (CTICU), where she will stay for at least 2-3 days following the surgery. Her surgery is tentatively scheduled for around 10am on Thursday morning, 12/13, but it could be bumped forward or back depending on the dynamics of a large medical center. It sounds like everyone expects that the AVC surgery will proceed, but of course that won't be determined until the surgery begins.
We have not yet met the surgeon, Dr Laks, but we have been assured that we will meet him before the surgery.
We cleary have so much to praise our great God for! And we eagerly anticipate receiving more things to praise Him for!
Prayer requests:
Thank you all for your prayers, and for rallying others for prayer as well. There are hundreds, if not thousands, of people praying all over the country for our precious daughter.
Love,
Scott & Gina
Hello everyone,
During a brief telephone consultation with Dr Laks this morning, he indicated that he would band Lacey's pulmonary artery instead of trying to repair the AV canal. Her age and size made it too risky to the repair work. Her heart tissues would likely be too frail, and she would likely need a follow-up surgery anyway. With the banding, she is expected to breathe easier, eat easier, and actually gain weight! You know how you sometimes wish your children would stay little forever? Be careful what you wish for! :)
Lacey was carried into the OR around 7:45 this morning. Around 12:45 pm, Dr Laks came and reported to us that the surgery was finished, and was successful. She did not need a blood transfusion in the OR, but she needed blood during recovery.
Lacey is back in the CTICU right now. She is connected to lots of hoses, probes, and wires, including a breathing tube. The doctors hope that the tube can be removed tonight, but it depends on how the pain management goes. They are optimistic that she will be able to take a bottle soon after the tube is removed.
So now, we are in "recovery mode". It's tough to see your little one unconscious, connected to all kinds of expensive beeping machinery. But we know that the Lord is here, helping us with every step of the way.
Short term medical goals are:
It turns out she was the perfect candidate for the banding, but the AVC repair would not have been a wise idea right now. Praise God for a patient surgeon! Lacey will have to come back to UCLA to repair the AVC once she is bigger and stronger. When I spoke with Dr Laks this morning, he estimated that they could do it at age 6-9 months.
We don't know how long we will be at UCLA. Since the procedure was less invasive than originally anticipated, we may be discharged sooner than the original estimate of 10 days. Of course it's still too soon to determine any of that. But we are getting top quality care.
Gina & I are getting some rest now (as is my mom who met us here today to wait with us!). I may have forgotten some significant information in this update, but I'm pretty tired right now, so please bear with me! :)
Thank you for your faithful prayers. We sense that they are being faithfully answered. Let everything that has breath praise the Lord!
Love,
Scott & Gina
Hello family and friends,
Another day of trials, and sovereign grace.
Last night, Gina & I were both awake at 1am when we got a call from the CTICU, saying that Dr Laks was making rounds and was available to meet with us. We walked over and met with him, and he said that Lacey was doing really well. We did not have much time to talk with him, since there were 2 emergency surgeries happening in the CTICU ward at that time.
After sleeping in, we went back over around 10am. Through the night, Lacey's temperature had spiked, so she was receiving an antibiotic and Tylenol, and her blood was being tested for bacterial and fungal infections. These tests are culture tests, so they take several days to yeild results. So if Lacey doesn't respond to the antibiotic after a few days, the culture results will determine the next course of action.
They had to close the ward again at 11am, because of another emergency surgery in the ward on one of the same patients as the night before. We're pretty sure it was a baby, but we don't know much about the case. The ward was closed for about 3 hours for this emergency procedure...
When we got back in the afternoon, we found out that Lacey's white cell count was elevated. They are now watching her blood for various types of infections (bacterial, fungal, viral), and giving her 3 different antibiotics as a precaution, plus Tylenol and something else as needed for fever. Bacterial and fungal infections can be treated with antibiotics, but only a few viral infections can be treated, and that is only treatable with some "hard core" medications. Her face was swollen. All this news, compounded with seeing her connected to all kinds of tubes and wires, was a bit overwhelming.
Then came grace. The nurse explained to us that it is common for the body to react this way to a big surgery, even when there is no infection. The swelling is because of fluid retention, also common to surgery. The nurse and doctors stated that Lacey is doing really well during her recovery.
Lacey still has her breathing tube. The plan was to remove it today, but it never worked out that way. Between pain management and "exercising" (i.e. forcing her to work for her own breath), she just wasn't ready. They're planning on letting her rest (remain on the ventilator) tonight, and work on getting the tube out tomorrow. Two factors involved in whether the tube can be removed are the pH and CO2 levels in her blood. If the tube comes out in the morning, she may be able to take a bottle in the evening!
Before leaving the hospital tonight, we were blessed to meet with Dr Laks again and ask some of the questions that we had not yet been able to ask. Here is a summary of what we learned:
Praises:
Prayer requests:
Thank you for your continued prayers on our behalf, and for your encouragement and support.
Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction so that we will be able to comfort those who are in any affliction with the comfort with which we ourselves are comforted by God. 2 Corinthians 1:3-4
Love,
Scott & Gina
Hello again,
Lacey looked much better today, as far as color and swelling. She still has her breathing tube. During her periods of "exercise" (being forced to work harder for her breath), she was working too hard and not expelling enough CO2. She is still weak from the surgery, and has been using her energy to fight off infection. So she just doesn't have the energy to breathe sufficiently on her own. They'll allow her to rest through the night, and then try again tomorrow. Once the tube is out, they will keep her in CTICU for at least 24 hours before transferring her to either PICU or pediatrics -- probably pediatrics.
Today Lacey had 2 lines removed from her abdomen, which will make her more comfortable and reduce the risk of infection. One was a tube that was there to drain excess fluids from the surgery site, and I don't remember what the other one was.
The Lord continues to sustain us. Once the breathing tube comes out, we can and will be more involved in her care, so our real work will begin then.
The other baby on the ward had another emergency procedure this afternoon, and the ward was closed for at least 2 hours. We did not see the parents.
Today's prayer requests:
Thank you for persevering with us. We look forward to coming home in the Lord's perfect time.
Love,
Scott & Gina
Lacey still has her breathing tube. She was too exhausted from "sprinting" (breathing exercise) yesterday, so they'll let her rest before trying anything again. However, she started getting breast milk through her feeding tube, and seems to be receiving it well.
She was transferred from CTICU to PICU (pediatric ICU) this afternoon, since there was no cardiac reason for us to stay. We liked CTICU better, since it was more spacious, comfortable, and private, but PICU is better than the Pediatric floor.
Eric, Becky, & kids came down for a visit this evening, which was really nice.
After we got back to the hospital, the nurses were finishing re-taping Lacey's breathing tube. She did NOT like that! She was really distressed, struggling against the breathing tube, her heart beating way too fast, face bright red from fighting so hard. That was really difficult to watch, but we helped get her through it. Some chemical assistance was needed, but after about 30 minutes she fell back asleep, and should sleep really well tonight.
We received a timely email tonight, which stated, "I know its all overwhelming. God is not overwhelmed." Amen!
Prayer requests:
Love,
Scott & Gina
Hello everyone,
I didn't send an update yesterday because no news has been, well, no news. Lacey still has her breathing tube and is at least 48 hours away from being able to extubate. On Monday she had her arterial line removed, which was her last intra-abdominal line. That significantly reduces her risk of infection.
The nurse today said that her breathing tube is the last major obstacle to overcome before she is ready to come home. Doctors estimate that, once the tube is out, they will want to keep her for observation for at least a week, maybe 2 weeks. We are praying that, once Lacey reaches some point of stability, she can be transferred to Cottage Hospital in Santa Barbara, much closer to home.
Gina got to hold Lacey today for the first time since the surgery. That was a huge blessing for both of them!
On Monday, Gina's mother brought our kids down for the afternoon/evening. That was perfectly timed, as it was Riley's 2nd birthday! So we got to sing Happy Birthday, eat some cake, open a present, and then play in the kid's room at the hotel. They were both so excited to see Lacey again. We were really excited to see them again. We really miss them tonight...
Prayer requests:
Thank you for bearing with us through this time.
Love,
Scott & Gina
Hello family & friends,
Again, not much news tonight. The breathing tube is still in place, and still a while from being removed.
Lacey probably will not be able to transfer to Cottage before being sent home. There must a pediatric cardiologist who makes rounds daily in order for her to be transferred anywhere. Santa Barbara only has 1 such doctor -- the one that Lacey has been seeing. We don't know his Christmas plans yet, so the transfer seems unlikely at this point. We're making plans to spend Christmas down here. If the shepherds could celebrate their Messiah's birth in a barn or a cave, then surely we can celebrate it here.
Over the last couple of days, Lacey has had several periods of "agitation", where she gets really distressed and fights against her breathing tube. What has changed today is that she really responds to her parents' voices and faces, and really calms down. Prior to tonight, she needed an anti-anxiety medicine to calm her down, and also typically needed morphine. Tonight, my voice seemed to be enough to soothe her, and she responded quicker to my voice than to the medicine. Praise the Lord! I sang some Christmas carols and hymns, so we had our own little worship service. Now she's sleeping soundly, and I'm refreshed by meditations on my Savior's birth, "the dawn of redeeming grace."
Since Lacey responds so well to our voices, and since she had a rather rough night last night with agitations, we will be taking shifts during the night so we can be here to calm her during agitations. Gina's shift begins when I finish this email and go get some sleep. My shift begins when she needs to go get some sleep.
Prayer requests:
Thank you again for your love and support. We really sense God's grace, mercy, and peace that is poured out in no small part because of your prayers.
"[God] spoke the incarnation, and then so was born the Son;
His final word was Jesus, He needed no other one!
He spoke flesh and blood so He could bleed and make a way divine;
And so was born the Baby who would die to make it mine!
So the Light became alive, and manna became man;
Eternity stepped into time, so we could understand."
-- The Final Word, by Michael Card
Love,
Scott & Gina
Hello again,
Our night vigils went pretty well. Lacey had her best night yet with one of us at her bed side. She needed morphine once today, but her need for medications is waning. They have been slowly decreasing her ventilator support for the last 36 hours or so, and she has responded well the whole time.
Since she seemed to be sleeping well this afternoon, Gina & I decided to run an errand. When we returned to the hospital, there was a group of Christians in the hospital foyer singing praise & worship songs for everyone to hear. I can't put into words how refreshing that was! We stopped and joined in for a couple of songs. God really ministered to us through those songs: Here I am to Worship, and How Great is Our God! These brothers and sisters had no idea how blessed we were by their service. Maybe our tears of joy were enough to communicate it. As God said in Jeremiah 31:25, "For I satisfy the weary ones and refresh everyone who languishes."
Lacey's progress had continued while we were gone. When we got up to Lacey's room, the doctors indicated that they were really pleased with her progress, and she would likely be ready for "sprinting" tests tomorrow afternoon or evening. There is a slight chance that extubation could be tomorrow night, but we're not counting on that. At this rate, extubation could likely be Saturday. (There is a very slight chance that we could be home for Christmas, but we're not counting on that either.)
Since Lacey is doing so well tonight, we won't do our all-night vigils again tonight.
During the last 2 nights, she has had temperature spikes. They are running blood cultures again, and put her on preventitive antibiotics again. If she has an infection, that will delay extubation.
We're continuing to make plans for Christmas down here. I'm going home tomorrow to be with Jeremy & Riley for a couple of days, and Gina will stay here with Lacey. I'll probably bring the kids back on Sunday, and we'll have our Christmas vacation at the hospital/hotel for a few days. We're having fun planning our celebration!
Prayer requests:
Thank you so much for your ongoing support. We thank our great God for each of you.
Love,
Scott & Gina
Hello everyone,
We are all back at UCLA tonight, Jeremy & Riley included. Tomorrow we'll decorate the hotel room for Christmas. We've got a bunch of Christmas mp3's on the computer to complete the mood.
I'm too tired to give a full update, so here is the short version. Lacey has had a rough weekend. The nurse on Saturday wasn't as attentive as the others have been. (I won't go into details.) We suspect this caused at least two unnecessary agitations. Today the IV in her neck fell out. This was the only IV they were able to get before her surgery -- her body is just too small to find another vein. For now, they can give all the medicines she needs either through the feeding tube (sedatives & Tylenol) or through injection (antibiotic). The one(s) who are most able to adminster the IV are currently on vacation.
Anyway, we are starting to lose some confidence in the weekend/holiday staff.
Prayer requests:
Thanks again for bearing with us.
Love,
Scott & Gina (& kids!)
Hello again,
Sorry for the lack of updates over the last few days. Frankly there hasn't been much to report in the way of progress or setbacks.
Lacey still has the breathing tube. She has been having some other issues that were hindering progress in weaning off the ventilator. Today they determined the problem: chyrseobacterium, an antibiotic-resistant bacteria. Praise God there is an antibiotic to treat this one, and that the cultures came up with a diagnosis. Her treatment for this started this afternoon. It sounds like the medical staff is not worried about this -- just another obstacle to overcome.
She still doesn't have a decent IV. The NICU staff came by to try to administer one this evening, but they were unsuccessful. They may try again soon, but the NICU has been swamped. The nurse today was able to get a line into her arm, but it may only be good for administering meds, not for drawing blood. If that's the case, then they will have to stick her heel to draw blood.
Lacey has had more periods of being awake and active over the last few days. I take that as a good sign, and it's great to see her eyes again.
We had a fun Christmas at the hotel. On Christmas Eve, we decorated the room with a mini tree, some lights and stockings, and told the Christmas story to the kids as we set up the nativity scene. On Christmas, when we got to the hospital to visit Lacey, the Beverly Hills Fire Dept was on the childrens floor with lots of toys that they were giving out to patients and their siblings. Later that afternoon, when I was with Lacey in the PICU, Santa Clause came through with even more presents for the patients. I was really moved that everyone went out of their way to make sure the patients got to have some kind of Christmas celebration. This really helps me appreciate Angel Tree all the more!
Prayer requests:
Thank you for your prayers, they really lift us up.
We hope you had a Merry Christmas. May the incarnation of the eternal God always amaze us, especially knowing that He was born -- He invaded history -- to die for all of our sins. That is the reason for the season! "He is my light and my salvation. Whom shall I fear?" Psalm 27:1.
Love,
Scott & Gina
Praise our great God! Lacey's breathing tube was removed this afternoon, and she is doing well! Her feeding tube was also removed.
Gina was present for the extubation. Lacey coughed a little bit, which is normal, and her voice was heard briefly. She is now getting minimal oxygen support, and has a healthy appetite. I got to hold her and feed her tonight for the first time since the 12th. What a relief for all of us. Thank you for your prayers to this end.
Around 4am, the nurse plans removing oxygen support and seeing how Lacey does. She felt that Lacey is ready to be transferred to the pediatrics floor. Of course that decision is ultimately up to the doctors.
Lacey's IV was removed today, because it was no longer good. She is now taking all her meds orally.
When Lacey is transferred to "the floor" (pediatric ward), she has a better chance of getting her own room because of the chryseo infection. We would greatly prefer a single (or even double) room, because that would mean that Gina could room in with Lacey and we can check out of the hotel.
Thank God for His faithfulness and goodness.
Prayer requests:
Thanks for your faithful prayers, and for celebrating this milestone with us!
Love,
Scott & Gina
Hello again,
Lacey has been doing so well without the ventilator that she was transferred to the pediatric floor this afternoon. It is a double room, but Gina can at least room in with her. It's a great sign of progress, but it's quite a transition from constant supervision to only being checked on every few hours.
I'll check out of the hotel tomorrow and take the kids home. We'll take it day-by-day as far as when Lacey can come home. I don't know how long they expect to keep her, or what specifically they are looking for (if anything).
Prayer requests:
Thanks again for bearing with us!
Love,
Scott & Gina
Hello everyone,
Jeremy, Riley & I are home tonight (Saturday). Gina is at UCLA rooming-in with Lacey.
Lacey has been feeding well, ravenous at times and not-so-ravenous at other times. That was pretty normal for her before surgery. I noticed that she is able to keep sucking on the bottle for at least 10 minutes at a time, which she was never able to do prior to surgery. So we're already seeing good results...
It sounds like everyone expects Lacey to be discharged tomorrow (Sunday) morning. It seemed more precautionary to keep her tonight. So I'll head back tomorrow to pick up my wife and daughter, Lord willing!
Prayer requests:
Thank you.
Love,
Scott & Gina