Lacey updates

Updates:

Lacey's previous trip to UCLA (11-30 through 12-28)
1-16-2008 1-17-2008 1-18-2008 1-19-2008 1-20-2008 1-21-2008 1-22-2008 1-23-2008 1-24-2008, out of surgery 1-24-2008, CTICU 1-25-2008 1-26-2008 1-28-2008 1-29-2008 1-31-2008	2-1-2008 2-2-2008 2-3-2008 2-4-2008 2-5-2008 2-6-2008 2-7-2008 2-8-2008 2-9-2008 2-10-2008 2-11-2008, extubated 2-13-2008 2-15-2008 2-18-2008 2-19-2008 2-20-2008, home

1-16-2008

Hello everyone,

Lacey's surgery is scheduled for 6am Thursday morning. Realistically she probably won't leave her hospital room until 7am.

Dr. Laks is currently planning on tightening the band around Lacey's pulmonary artery. If he can further restrict the artery, then he will tighten the band, but if there is already enough restriction, then he will have to repair the AV canal. Ideally he wants to wait on the repair, because she is still so small and is currently "malnourished". We were really hoping for the repair so that we can be done with this and not have to come back for a 3rd surgery. Nevertheless, not our will but God's will be done...

There is a small risk of surgery being postponed. A chest x-ray revealed something in her lungs. Some of the more experienced cardio staff suspect that it is the edema from her heart condition, but there is a risk that it is a virus. If it is a virus, then they won't operated until the virus is gone. They will run some lab tests overnight and make the final decision in the morning.

Praises:

we made it here and got Lacey admitted without any problems

they got an IV in Lacey's arm on the first attempt!

Prayer requests:

that Lacey would be free of any viral infections, so surgery could proceed

for God's sustaining grace to keep Lacey safe during surgery

for a flawless surgery that exceeds the surgeons' expectations

for as quick and easy a recovery as possible

for Gina & I to be strong only in the grace that is in Christ Jesus

for us to seek to accomplish His will while we're here

Love,
Scott & Gina

I wil say of the LORD, "He is my refuge and my fortress;
My God, in Him I will trust."
-- Psalm 91:2

1-17-2008

Hello again,

Some of you have heard by now that Lacey's surgery was postponed. When she was wheeled into the OR, they checked her blood pressure before anesthetizing her, and it was deemed too high to continue with surgery. Dr. Laks wanted to wait 3-4 days to lower her b.p. before operating.

Since then, there has been some question as to whether Lacey's heart condition is behind her high b.p. The restriction from her existing band seems to be the right amount, so they are looking into other causes. Some common causes for high b.p. are thyroid and kidneys. They have decreased her thyroid dose, and will be monitoring her kidneys via blood work and sonogram.

She had a fever this morning, so they are also doing blood cultures to identify any infection. The fever may just be from all the excitement.

Initially Gina & I were both disappointed with this turn of events. But we both sense this is an answer to prayer: God kept Lacey out of surgery, possibly because she may not need it, and/or possibly because she was not ready for it (infection, or something else...?).

If her kidneys and thyroid (and any other criteria) are all fine, then the last remaining option is to repair her heart. But we'll determine that later.

They put Lacey on a feeding tube this afternoon. The thinking is that they can get at least as much nutrition in her with the tube as with a bottle, but she wouldn't burn the extra calories and get exhausted by sucking and swallowing. Hopefully she can gain some weight over the weekend.

A note from Gina:
As I reflect on the events that took place today I am aware that what we have learned about Lacey's condition is neither positive nor negative at this point. There are so many variables right now, any of the possible scenarios/answers could prove to be good news or bad news. We simply don't know and frankly the doctors don't know either. That being said I can't explain the overwhelming peace that I feel today. I believe that our faithful God has responded to our collective prayers. He is here, He is not merely a bystander but right in the midst of our trial intervening on Lacey's behalf and protecting her. He has given me a tremendous boost in faith today and for that I am so thankful. Thank you all for praying. "Faith is the substance of things hoped for, the evidence of things not seen." -- Hebrews 11:1

Prayer requests:

for the doctors to discern God's will for Lacey's treatment, whether surgical or non-surgical treatment;

for Lacey to respond to her treatment, and her b.p. to come down to a normal level;

for the peace of God to multiply in our hearts;

for Lacey to be free of infections;

for God to continue to intervene in unforseen ways, for Lacey's benefit (that way He gets all the glory);

for our whole family while we're separated.

With gratitude for your support, encouragement, and prayers,
Scott & Gina

1-18-2008

Hello everyone,

It turns out that Lacey is not in congestive heart failure after all. This was confirmed by blood tests. Her kidneys are fine, confirmed by blood tests and sonogram. It was determined today that her thyroid is the most likely culprit behind her high blood pressure. Her thyroid dose was reduced yesterday. Unfortunately it takes about a week to respond to a change in thyroid medication, and I don't know if her blood pressure will respond to that change sooner than in a week. We are grateful for this, since thyroid is the easiest of the likely sources to treat.

Lacey has been having fevers for most of the day today. They are continuing to run blood and urine cultures to determine the source of the fevers. We should have some of the first culture results tomorrow or the next day.

Once her fevers are gone, they will consider whether she still needs surgery on Monday or even later next week. We still need to find out from the doctors what factors will be considered for surgery, especially if her b.p. may not come down for a whole week.

Praises:

that Lacey is not in congestive heart failure, and her kidneys are fine;

that a key factor in her high b.p. is easily treatable;

that she was spared from surgery while possibly incubating some infection.

Prayer requests:

for the doctors to discern and follow God's plan for Lacey's treatment, and that she would only have surgery now if it is part of His perfect plan;

for healing for Lacey's fevers and possible infection;

for Lacey to respond well to the change in thyroid medication;

for Gina & I to ask the right questions and get the right answers;

for Gina & I to continue to be upheld by the mighty hand of God;

for our whole family during this time apart.

"And we know that all things work together for good to those who love God, to those who are called according to His purpose." -- Romans 8:28

Love,
Scott & Gina

1-19-2008

Hello again,

Well, Lacey is in congestive heart failure after all. The lab results I mentioned yesterday apparently were not indicative of the whole picture. Blood pressure has not been a concern today, probably because the doctors are actively working on lowering it.

Lacey's fevers have been mitigated to low-grade fevers (at or below 37.9 C / 100.2 F), but they are still exercising caution. She started a vancomycin regimen today, which may be replaced with a different antibiotic if the cultures come back positive.

The lead cardiologist (not the surgeon) is moving Lacey toward surgery next week. If she is fever-free for 48 hours, then she can be considered for surgery. (Note that her low-grade fever today counts as part of the fever-free period.) One problem is that they're not sure which surgery would be best; there are significant pros and cons to each procedure. At this time I think the lead cardiologist and the surgeon disagree on what is best. They plan on discussing her case with the whole team on Monday or Tuesday morning. Please pray that God would be the lead on Lacey's case and make this decision.

Lacey has been on a feeding tube for the last 2 days. (She really wants to drink a bottle, but she's on strict orders: tube only!) She has gained about 2.5 ounces in that time, most of it today. Let us pray it is good weight gain, and not fluid retention.

Prayer requests:

for almighty, all-knowing God to decide Lacey's treatment, and for the doctors to cooperate;

for Gina & I to have confirmation, peace, and boldness about God's perfect plan for Lacey's treatment;

for Lacey's fevers to comletely disappear, and for her to be free from any infection;

for Lacey's weight gain to be good weight;

for Lacey to respond well to the changes in thyroid and high blood pressure meds;

for endurance and strength for Gina & I in this marathon;

for God to be honored and glorified in all these events!

"Not that we are sufficient of ourselves to think of anything as being from ourselves, but our sufficiency is from God..." -- 2 Corinthians 3:5, NKJV

Blessings to each of you,
Scott & Gina

1-20-2008

Hello family & friends,

Lacey had a fever today, so her 48-hour surgery countdown has been reset. They have switched her antibiotic, but the cultures to date are all negative. Her blood pressure is still high, but being treated. She's still on the feeding tube, still not allowed to drink a bottle. She did not gain any weight over the last 24 hours.

There is some concern here that Lacey's heart problems are not the whole story behind her not gaining weight. Based on her current condition, which the doctors are watching closely, they think she should be doing better than she actually is. If they can't find any other issues, then they will proceed with surgery this week (as the fevers permit). It seems like they are equally concerned and baffled.

Prayer requests:

for God to reveal, prior to surgery, any underlying condition(s) behind Lacey's failure to gain weight;

for Lacey's ongoing medical needs;

for our ongoing spiritual and tangible needs, which God lovingly and faithfully continues to provide.

We have complete confidence that God knows exactly what's going on and we trust that He will intervene on Lacey's behalf and stop the surgery again if necessary. We know that Lacey will need this surgery at some point (unless she is miraculously healed!), and now may or may not be the time. We surrender this to our faithful Lord and Savior, and put this in His hands.

Thank you for your ongoing support.

Love,
Scott & Gina

1-21-2008

Hello everyone,

Today was pretty tough. There were no answers to the open issues: fevers still present; source of fever remains unidentified; blood pressure still elevated; etc. We are assured that our great God knows exactly what is wrong, and pray that He will guide the doctors in how she should be treated.

The attending cardiologist today told us that the repair surgery is still Lacey's best chance, despite the fevers. If her fevers persist without any identifiable reason, then there is a small change they will send her to surgery with a fever.

At some point, the cardio team will meet to discuss her case and determine a treatment plan. I asked if we could be present for that meeting, and they strongly advised against that. They need to be free to discuss things that could be unpleasant for parents to hear. Plus, the attending cardiologist said that if we were a part of the decision, and things went badly, we could feel responsible. Instead, he said, we should be preparing for the possibility of things going badly during surgery. The last thing he said before leaving the room was, "Hold on to your faith."

Later in the day, we were told that Lacey has a small bacterial infection. It is likely not responsible for her fevers, and does not introduce any complications at this time.

Since UCLA is an educational facility, there will be a new cardio team tomorrow. This means that there will be a different attending cardiologist tomorrow, who probably will not be so aggressive to push for surgery with an unexplained fever. We'll take this as an indicator of divine protection.

Prayer requests:

for Gina & I to hold on to God's many precious promises toward all believers;

for Lacey's medical issues;

for wisdom and discernment for the new cardio team;

for God to lead us all in determining Lacey's treatment plan;

for God to uphold Lacey, in the hospital room and eventually in surgery.

"For by [His own glory and excellence, God] has granted to us His precious and magnificent promises, so that by them you may become partakers of the divine nature, having escaped the corruption that is in the world by lust." -- 2 Peter 1:4, NASB

Love,
Scott & Gina

1-22-2008

Hello,

Lacey's fevers continued to spike today. They submitted another series of cultures to try to identify the elusive source. It sure seemed like things weren't progressing at all, that we're in the same place today as we were days ago.

Then Gina remembered the book The Hiding Place, in particular the part where Betsie ten Boom sensed that God wanted her to give thanks for the fleas, even though she didn't know why. (If you've never read the book, you should read it!) If Betsie was able to give thanks for the fleas at Ravensbruck concentration camp, then surely we can give thanks for these fevers. Even if we don't yet know why Lacey is having them. Even if we never find out why she is having them.

This afternoon, I started driving home to spend a few days with Jeremy & Riley, while Gina will stay with Lacey at UCLA. It is wonderful to be home with them tonight, even if all five of us can't be together. Jeremy said he wanted to go to the hospital to see Lacey, and that he missed Lacey more than she missed him!

This evening, the cultures revealed an infection that may be the source of the fevers; the cultures are still running to try to more closely identify the source.

Tonight the surgeon came by to see Lacey. He said that if things go well with diagnosing and treating this infection that he may want to operate as soon as Thursday the 24th! This was a shocker to us. If surgery does happen this week, then I'll take the kids back to their aunt's house and head back to UCLA much sooner than planned.

We're learning not to get our hopes up for surgery in 2 days, but rather to prayerfully surrender everything to God's will. He can cause the surgery to proceed, or He can stop it again, just like He did last week. Either way, we will give thanks for the circumstances that determine what happens.

"Rejoice always; pray without ceasing; in everything give thanks; for this is God's will for you in Christ Jesus." -- 1 Thessalonians 5:16-18

Prayer requests:

for the source of Lacey's fevers to be identified and treated, before surgery;

for the doctors to discern and submit to God's plan for her treatment;

for God to intervene as necessary to accomplish His plan;

for peace and protection for our family;

for God to be glorified!

I know I mention this frequently, but thank you for your love, support, and prayers. They make all the difference...

Love, Scott & Gina

1-23-2008

Hello all,

Lacey is scheduled for surgery at 7:30 am tomorrow, Thursday 1-24. Please pray that God would either stop the surgery, or cause it to be successful.

Love,
Scott & Gina

1-24-2008, out of surgery

Hello,

We are so grateful for God's providence and protection for Lacey's surgery. He has certainly answered our prayers faithfully. Gina & I both experienced His supernatural peace before and during surgery, not knowing how the procedure would actually go. (This peace was much different from last week.) He enabled us to actively surrender our daughter to His sovereign will. Note that this is way different from shrugging your shoulders and saying, "There's nothing more I can do." This is an deliberate act of saying, "There's nothing I can do, but my God can do it all. Lord, here is my daughter. Do what you will."

She came out of surgery around 11:30 am this morning. In the OR, they were able to temporarily lower her blood pressure to its ideal level (70/?) and then adjust the tension of the band so that when her b.p. is down for real, her lungs will get approximately the right amount of blood pressure.

So now the primary goal will be to decrease her blood pressure, and then the lungs should be fine. Dr. Laks estimates that, if all goes according to plan, Lacey will have 3-6 months to grow before needing the big repair surgery.

We can't help but praise God for His goodness. He kept her from the big repair today, since she obviously wasn't ready for it. And He still provided a way for her to be treated surgically.

I will bless the LORD at all times;
His praise shall continually be in my mouth.
O magnify the LORD with me,
And let us exalt His name together.
I sought the LORD, and He answered me,
And delivered me from all my fears.
The angel of the LORD encamps around those who fear Him,
(take a moment to visualize this!)
And rescues them.
O taste and see that the LORD is good;
How blessed is the man who takes refuge in Him!
-- Psalm 34, various verses

Prayer requests:

for Lacey's recovery: pain management, extubation, no infections;

for continued peace that goes beyond our understanding;

for God to be glorified in & through all of us.

Thank you again for your prayer and support. Let's give God the glory!

Love,
Scott & Gina

1-24-2008, CTICU

Hello again,

Lacey is in the CTICU for a few nights. Her heart rate is a bit low (80-100), so they are trying to bring it up (> 120).

They are adjusting the ventilator in the hopes that she can be extubated tomorrow, but it is definitely too soon and there are too many variables to say or even guess whether she will actually be extubated tomorrow.

During the surgery this morning, the surgeon went in "laterally", that is, through the ribs, and he did not have to break any ribs to get in. The surgeon expects that she should have little or no pain from the incision site, nor from bruising. We found out a few days ago that she had a cracked rib from the last surgery.

Prayer requests:

for Lacey's heart rate to come up and stabilize, without the aid of the meds she is currently on;

for her to be extubated sooner rather than later, but of course in the Lord's perfect time.

Praising our Savior all the day long,
Scott & Gina

1-25-2008

Hello everyone,

Please pray for the following issues:

Lacey's blood pressure is still quite high, despite high doses of captopril;

Lacey's heart rate is still slow, despite meds to increase it, and despite repositioning the arterial line which should have helped;

Lacey's toe temp is quite low (25.1 C, should be above 30 C)

No extubation today! (No suprise there, either.) We'll take it day by day, since tomorrow will take care of itself...

Thanks,
Scott & Gina

1-26-2008

Hello everyone,

I've been away from the hospital for about 30 hours, so I'm lacking some of the medical details surrounding Lacey's condition. Generally speaking, she's doing ok. They're switching her meds around a bit, hoping to extubate soon, but only the Lord knows when that will be.

More urgently, Gina has come down with the flu. She's miserable right now, but resting in the hotel. (This is our first night in the hotel since the 16th.) Especially concerning right now is that is would be really really bad if Lacey got this flu. Gina has been keeping her distance for the last couple of days while the flu has been setting in.

Prayer requests:

for Lacey to not get the flu (or any other virus or other infection for that matter);

for Gina to get past the flu;

for Lacey to be extubated in God's perfect timing (hopefully sooner rather than later).

I went home for a day so I could take Jeremy to a school event for dads. That was really fun.

Love,
Scott & Gina

1-28-2008

Hello again,

Lacey's vitals continue to improve, slowly but steadily. She has been getting nutrition through her feeding tube, a little more formula with each feed, working up to an adequate amount for when she comes home.

She was almost extubated this afternoon, but it was decided that she wasn't ready. (My opinion is that she wasn't given a fair chance, and that the tube is causing more agitation than benefit. But I know God sees the whole picture and orchestrates her care, and I am thankful for that.) Nevertheless, she's now getting more ventilator support, resting up for another attempt tomorrow or Wednesday.

Gina is feeling better today, but is still sick. (Lacey still shows no signs of getting sick! For that matter, neither do I.) This afternoon I took Gina home. Tomorrow, after hopefully a good night's rest at home, she will surprise the kids and pick them up, and spend a few wonderful days with them.

I drove back to UCLA tonight, and I'll be with Lacey for the next few days. Later in the week, Gina and I will trade places.

When I got back to Lacey's room, I had just missed one of her agitation spells. Since she was unable to calm down by herself, the nurse gave her a dose of ativan (anti-anxiety drug). After her first surgery, these agitations and ativan doses were a big hindrance to extubation. We made the most progress toward extubation when Gina & I were able to be here and personally comfort her.

Prayer requests:

for Lacey's continued health and recovery;

for Lacey's agitations to be resolved by personal comfort and not require chemical assistance;

for Gina's health, rest, and time with Jeremy & Riley;

for health, wisdom, and endurance for me;

for God to be glorified!

Thanking our great God for His providence, protection, and goodness,
Scott

1-29-2008

Hello,

Lacey won't be extubated any time soon. She had a bad episode this morning of agitation, producing coughing, producing more agitation, producing more coughing, etc. Her ventilator support has been increased to "full support." They're going to wait about a week before extubating, to give her a chance to get stronger. They're giving her all the nourishment they can get into her, working her up to 2 oz (60 mL) every 3 hours, which is more than she's ever taken. Tonight she took 55 mL, and seems to be tolerating it well.

She had a smaller agitation/coughing cycle tonight. She seems to be ok now.

She may be transferred to PICU tomorrow. It sounds like they're just waiting for a bed to open up over there.

Gina is doing better, but still has a rough cough. Jeremy & Riley are thrilled to be home with her tonight!

Prayer requests:

for Lacey's agitation/coughing spells to cease;

for Lacey to grow and strengthen between now and extubation;

for joy and endurance for all of us (according to James 1:2-4).

Thank you so much for your prayers.

Love,
Scott & Gina

1-31-2008

Hello all,

Lacey got transferred to the PICU yesterday morning. I like the CTICU better, but being in PICU is a sign of progress. Her main issues are no longer cardio related.

They discovered a bacterial infection in her blood yesterday. Cultures are still pending as to what bacteria it is (all we know is Gram-positive), but she is on 3 antibiotics preemptively. She had a high fever last night, a low fever this morning, and nothing since then. This infection was lowering her blood pressure, so they put her on dopamine to bring it back up. Because of the dopamine, they had to stop her feeds. This is all a bit frustrating. Hopefully they can stop the dopamine and resume feeds during the night.

Also they are going to start weaning her off the fentanyl that she has been on since surgery. She's on a low dose now, but it's still a very powerful opiate.

In the PICU, Lacey will be weight every night. Last night, she was 2.89 kg (6 lb, 6 oz), which is her new record. I expect that to fall a bit tonight.

Prayer requests:

for God to remove this infection, whether by His power or by pharmacology;

for Lacey to resume feeding, gain weight, and be ready for extubation next week;

for Gina's cough to end -- it's still pretty nasty;

for patience and endurance for all of us.

Praising Him still,
Scott (& Gina, Jeremy, Riley & Lacey)

2-1-2008

Hello again,

Lacey had a rough day today. This afternoon she had her worst agitation period I've seen yet, triggered by a fever and by fighting her breathing tube. It lasted over 2 hours. Once she got past it, she slept quite well for the rest of the afternoon. For now she will be getting ativan around the clock to try to prevent this from happening again.

They identified 2 different bacteria in her blood, and at least one of them is in her respiratory system. While they are serious bacteria (I don't know if they're "resistant"), the doctors are relieved that they caught it as soon as they did. She was already on the right antibiotics to treat both.

Lacey's feedings have resumed, and they are in the process of bringing her back up to 20 ml/hour, where she was when they stopped the feeds. Currently she is at 10 ml/hour.

There are no immediate plans to move her towards extubation.

Prayer requests:

for Lacey to be un-agitated, and to get infection-free;

for Lacey to gain weight and be ready for extubation;

for Gina's cough to vanish, and for my continued health;

for complete surrender to God's perfect plan, and the accompanying joy and endurance that can only come from Him.

Thanks for your support and prayers.

Love,
Scott & Gina

"Therefore, since we have so great a cloud of witnesses surrounding us, let us also lay aside every encumbrance and the sin which so easily entangles us, and let us run with endurance the race that is set before us, fixing our eyes on Jesus, the author and perfecter of faith, who for the joy set before Him endured the cross, despising the shame, and has sat down at the right hand of the throne of God. For consider Him who has endured such hostility by sinners against Himself, so that you will not grow weary and lose heart."
-- Hebrews 12:1-3, NASB

2-2-2008

Hello everyone,

Lacey had a good day as far as agitations. We are grateful for the ativan and the way they are currently using it. She has had several agitations where she looked fine, but her heart and breathing rates were definitely high.

No fevers today, but she has a new complication: a blood clot in her right femoral vein, upstream of the PICC line. This is not a life-threatening condition as it can be in adult patients, primarily because her femoral vein is so tiny. Obviously there are some theoretical risks from the clot, but the doctors say that the chances of something actually happening are really small -- they say this from experience, not just theory.

"All to Jesus I surrender, all to Him I freely give..."

She is now on a carefully guarded heparin drip. The clot (and heparin) doesn't affect the schedule or plans for extubation, but there is a chance it could prolong her hospitalization, since heparin can't be given at home.

"All to Thee, my Blessed Savior, I surrender all."

Gina brought the kids to UCLA for a nice long visit today. That was a huge blessing for all of us.

Prayer requests:

for God to remove this clot, these infections, and this tracheal tube;

for Lacey to be able to come home;

for continued peace for Gina & I;

for our great God to be glorified for His goodness toward us.

Thanks for lifting us up.

Love,
Scott & Gina

2-3-2008

Hello,

Lacey had a pretty good today: no agitations, no fevers, and she slept most of the day. She was awake from about 6:45 to now (about 11:35), except for a 20-minute nap in the middle. She's trying to go to sleep now.

They "sprinted" her on the ventilator tonight: they shut off all ventilator support to see how she did. She did great. I sang hymns and praise songs for her the whole time, and she was so at-ease that she actually fell asleep in the middle of the sprint! Praise the Lord! The angel of the Lord encamped around those who fear Him, and He rescued us. They'll do more with the ventilator tomorrow, in preparation for extubation. There is no timeframe for extubation; it all hinges on how she does during her "tests".

We're learning more about the risks from her infections, which are big. It could result in complications for her heart repair. Between the infections and the clot in her leg, there is a small risk of stroke. This risk is small enought that the doctors aren't too worried about it. But it is still a risk that we're obviously concerned about.

Prayer requests:

for deliverance from all these complications;

for no new complications;

for a successful path to extubation;

for comfort and peace, as we surrender our baby to God's will.

"And we know that God causes all things to work together for good to those who love God, to those who are called according to His purpose." -- Romans 8:28, NASB

Love,
Scott & Gina

2-4-2008

Hello everyone,

It was another good and peaceful day for Lacey. They're being conservative with the ventilator: no sprints, and they are slowly weaning it down. The intensitivist fellow estimates 5-7 more days until extubation. They want to take advantage of her intubation to pack on some weight, which will better enable her to thrive after extubation. She is just over 7 pounds (3.195 kg), up about 18 oz from when she was admitted almost 3 weeks ago.

Cardiology is gaining confidence that her infections will not present a risk for her future heart repair, but there are still some tests to be run. The risk of stroke is also reduced, but is not completely gone.

Gina is feeling well enough to trade places with me tomorrow. She will be here with Lacey, and I will be home with Jeremy & Riley.

Prayer requests:

for an end to all complications! (both current and future);

for excellent weight gain, and excellent progress with the ventilator;

for Gina's lingering symptoms to be removed;

for patience and endurance for all of us, since we will likely be here for a total of at least 4 weeks;

for God to be pleased by our attitude and conduct.

"...do not worry about tomorrow; for tomorrow will care for itself. Each day has enough trouble of its own." -- Matthew 6:34, NASB

Thanks,
Scott & Gina

2-5-2008

Hello,

Today the doctors discovered a small area in Lacey's brain that had been bleeding. It is not actively bleeding, however it does pose severe risks:

she cannot be on heparin anymore, or she could experience bleeding in the brain;

thus, heparin can no longer help her system to dissolve the clot in her leg;

thus, the clot may break up in the blood stream and cause a stroke, heart attack, or damage to other organ(s) and/or system(s).

She is literally in danger for her life.

Let us pray that this clot does not dislodge or break apart, but rather that it dissolves slowly, or that our all-powerful God supernaturally removes it.

Thank you,
Scott & Gina

2-6-2008

Hello family and friends,

Lacey was put on a new medicine to reverse the effect of the heparin. They will watch how she responds to this med via routine labwork. Tomorrow they will do a repeat ultrasound of her head and leg.

She has been having a larger-than-normal amount of secretions from her breathing tube. They ran a culture to test for a RSV (which would be really bad) or similar respiratory bugs. So far the culture is negative. Thank God!

She is still at risk of stroke, etc. Please continue to pray that the clot cooperates.

Thanks,
Scott & Gina

2-7-2008

Hello everyone,

Today was much better than the last couple of days. There are no changes in Lacey's condition. No fevers, no positive cultures, no abnormal lab results. That means that there are no new complications, for which we thank our faithful God!

They did another ultrasound of Lacey's brain, and there is no change to the bleed area. It may take some time for this to go away, but it is still not bleeding. They will not check the clot in her leg for a week or so, at the earliest, since they expect that to be a slow process as well. She is still at risk for life-threatening stroke or similar event.

Gina still has her cough, and can't be here with Lacey until her cough goes away.

When we were here in December, Lacey's roommate on the pediatric floor was a 3-year-old boy name Aldo. He was waiting for a heart transplant, and at that time had been in the hospital for the last 2 months. When Lacey was admitted this time, Aldo was still here, still in the same room, still waiting for a heart. Whatever his condition, he is deteriorating and was transferred into the PICU yesterday. I found out today that he already received a heart, and now needs another one. He has spent at least 7 months of his short life in the hospital. Please remember Aldo and his parents in your prayers. I can't imagine what his parents are going through, waiting for a heart that may not come while their child gets worse every day.

Prayer requests:

for Lacey's continued progress, with no further complications;

for Lacey's clot to be supernaturally removed, and the same for her brain bleed area;

for God to remove Gina's cough;

for Gina & I to have complete dependence on God alone;

for Gina & I to have the peace, endurance, and joy that God promises to all those who trust in Him completely;

for Aldo and his family.

Thank you,
Scott & Gina

2-8-2008

Hello everyone,

The doctors were really happy with Lacey's progress today. She weighed in at 3.5 kg (7 lb, 11 oz), had no agitations, no fevers, no abnormal lab or culture results, and was very pleasant during her awake times. She even managed to smile through the tape that holds her tube in place, which is no small feat. Thank you for your prayers to this end! Lacey has turned the corner, so to speak. And God has been very gracious to us, in giving us comfort and peace. Even though she will still be at risk for the blood clot issues for a while.

Today they reduced her ventilator support. There is a chance she could be extubated early next week if all goes well over the weekend.

Aldo has been asleep every time I walked by. I suspect that he is sedated, but there is a chance that it is his because of his progressing condition.

Prayer requests:

for Lacey's continued progress, moving toward extubation;

for Lacey's complications and risks to be removed, if it is God's will;

for Gina's cough to be removed;

for healing for Aldo, and comfort for his parents.

Psalm 84:11-12, NASB

With much gratitude for your faithful prayers and support,
Scott & Gina

2-9-2008

Hello everyone,

Lacey has made more progress on the ventilator. She is only 2 "steps" away from extubation. At this stage, each step may take 8-12 hours, so it could be tomorrow evening or Monday morning, if everything goes well.

I got to hold her this morning, for the first time since surgery. That was wonderful. She was awake for most of the morning, and slept all afternoon. Gina came down to visit today. Unfortunately, Lacey slept through the entire visit.

The doctors will determine a treatment plan for Lacey's clot on Monday. There are more options than just heparin, but they are still walking a fine line.

So, her remaining issues appear to be: the clot vs. the bleed; extubation; and feeding and weight gain after extubation.

Our pediatric/PICU neighbor Aldo has pneumonia and a clot in his leg. He is still sedated. His parents are clearly having a rough time, as would any parents under the same circumstances.

Prayer requests:

for Lacey's continued progress;

for wisdom for the doctors in how to treat her clot;

for Aldo's worsening complications, and for his parents.

"Give thanks to the LORD, for He is good; His love endures forever."
-- 1 Chronicles 16:34
-- Psalm 106:1
-- Psalm 107:1
-- Psalm 118:1, 29
-- Psalm 136:1

Giving thanks with each of you, and for each of you,
Scott & Gina

2-10-2008

Hello everyone,

Lacey has been on minimal ventilator support all day, and did well. If she continues to do well through the night, then she will be extubated tomorrow late morning -- "after rounds" which means between 9 and noon. They will discontinue her ativan (anti-anxiety drug) around 2 a.m. so she is alert for extubation. I'm going to bed early, so that I can come back between 4 and 5 to help soothe her if she starts getting upset.

Gina is feeling better (still has a mild cough), and we plan on trading places tomorrow, Lord willing.

I don't have any updates on Aldo, but he looks the same as he did yesterday.

Prayer requests:

for Lacey to do well during the night and get extubated tomorrow;

for Lacey to be able to feed well post-extubation;

for wisdom for the doctors in determining how to treat her clot;

for Gina to be able to be with Lacey;

for Aldo and his family.

Thanks again for your support.

Love,
Scott & Gina

2-11-2008, extubated

Hello everyone,

Lacey was extubated this morning around 10:30. Ever since then she has been working harder than expected to breathe. It seems like this is acceptable to the doctors, as though they expect her to adjust to breathing off the ventilator. We're still pretty concerned about this. She improved through the day, but her breathing is still more labored than it was prior to surgery. At this time, it sounds like they do not plan on re-intubating her, and they are planning to transfer her out of the ICU tomorrow to the pediatrics floor.

Please pray that God would enable Lacey to breathe easily on her own, and that she could continue to gain weight.

Gina is at UCLA tonight with Lacey, and I just got home with Jeremy and Riley.

Thanks,
Scott & Gina

2-13-2008

Hello again,

Lacey has remained off the ventilator, but her labored breathing ("retractions") continues. It is improving somewhat, and the doctors aren't too concerned. However, they will not send her home with her current level of retractions. She has been drinking bottles (with some effort), so they removed her feeding tube. She has lost some weight since extubation, but it sounds like we are still in the adjustment period, so it's too soon to react too strongly to any of this. I don't know how long this adjustment period is supposed to last.

The neuro group wants to perform an MRI next week to look for any damage from the bleed area in her brain. This will require sedation, as well as re-intubation that is expected to be brief (well under a day).

Lacey was transferred to the pediatric floor tonight, so Gina can now room in with her.

Prayer requests:

for Lacey to breathe easily on her own;

for Lacey to feed well and gain weight and strength;

for Gina to get enough rest;

for patience and endurance for all of us;

for continued trust in God's faithfulness, and in His perfect plan.

Love,
Scott & Gina

2-15-2008

Hello everyone,

Lacey has had a great appetite for the last couple days, today drinking about twice the amount per feeding as before surgery. Her weight is increasing again (she lost weight after extubation); she is back up to 7 pounds, 3 oz. She was in good spirits and was very comfortable today.

Yesterday, they removed the PICC line in Lacey's leg, the one that was downstream of her clot. The various teams were all in agreement that the PICC line could and should come out, despite it being a physical barrier to the clot breaking loose.

There is no change in her brain bleed area, except that it looks like her body is starting to re-absorb the bleed. Neurology still wants to do an MRI next week to look for brain damage. It's not clear to us whether it is for purely informational purposes or whether it would affect her present treatment. If it's only informational, then we may ask them to not do the MRI at this time; we don't want her to be sedated and intubated again, especially if there is no gain from doing so.

Cardiology did an echo today, and her heart looks the same, which is good. Her oxygen saturations ("sats") were pretty high all day, as was her blood pressure. I suspect that if her blood pressure is reduced, then her sats will come down to an appropriate level.

I've been sick the last two days, probably with the same flu that Gina had. (That's why there was no update yesterday.) Jeremy & Riley are fine so far. They've already been exposed, so they might not get it.

Prayer requests:

for Lacey to continue to feed well and gain weight;

for God to remove the clot and to protect her brain;

for Lacey's blood pressure and sats to come down;

for wisdom regarding whether to proceed with the MRI;

for my health, and Jeremy's and Riley's as well;

for God to be glorified in this trial.

Thank you again,
Scott & Gina

2-18-2008

Hello everyone,

Lacey's appetite has been less than before, but is still adequate. Some of her weighings have seemed unreliable, but the pattern is that she's gaining weight.

She will get the MRI some time tomorrow. If it's in the morning, they may discharge her in the afternoon! But if it's later in the day, they'll probably discharge her Wednesday.

This long leg of the journey is at last coming to an end.

Several times today, Lacey had agitation periods where she was inconsolable, and needed ativan to help settle down. She still gets ativan regularly (small doses every 12 hrs), and "spot" doses as needed. I was told initially that ativan carries no risk of dependency, but it turns out that is far from true. This will be interesting once she comes home.

Jeremy got sick yesterday with what looked like the flu. He seemed much better tonight. Riley was hit with it overnight; she "slept in" until about 4:30 pm, and went to bed at 8. I'm past the worst of it, but I expect to have this cough for a couple more weeks...

Prayer requests:

for God's perfect timing for the MRI;

for God's perfect timing for Lacey & Gina coming home;

for Lacey's agitations to stop;

for health for all of us;

for God to be manifested and glorified!

Thanks again,
Scott & Gina

2-19-2008

Hello again,

Due to staffing issues, Lacey's MRI was postponed until tomorrow (Wednesday) at 3pm. They expect to discharge her tomorrow night.

Riley and Jeremy are both doing much better as far as their flu goes. However, Jeremy has a secondary ear infection, which is common for him when he gets a heavier virus. He's been crying in his sleep at times tonight, poor little guy. I plan to take him to the doctor tomorrow, and then drive straight down to UCLA.

Lord willing, we will all be home in 24 hours!

Gina ran into Aldo's mom in the hall today. Aldo is either out of the PICU now, or is ready to come out very soon. He removed his own breathing tube, and everything was ok! Now that he is past the pneumonia, he is still waiting for a heart transplant.

Prayer requests:

for the MRI to take place tomorrow, with blessed results;

for Lacey & Gina to come home tomorrow night;

for Lacey's blood pressure and saturations to come down to "normal" levels;

for Lacey to thrive at home, with no more complications;

for Aldo and his family;

for God to receive all the glory that He is due!

With great appreciation for your bearing with us in all these adventures,
Scott & Gina

2-20-2008, home

Hello everyone,

We have so much to praise our great and faithful God for.

First, we're all home tonight.

Second, an ultrasound on Lacey's leg revealed that the clot is gone!

Third, Lacey only needed sedation (not general anesthesia or intubation) for her MRI today.

Fourth, preliminary MRI results showed no signs of brain damage! (No swelling, and no atrophy.)

"Let everything that has breath praise the LORD!"
-- Psalm 150:6

God is so good! And we thank each of you for helping to get us here, laboring in prayer for our family.

Now that we're home, there are the ongoing prayer requests:

for Lacey to thrive;

for Lacey to remain healthy;

for the rest of us to become healthy again;

for the Lord to continue to increase our faith in Him and dependence on Him.

"Let it be said of Jacob and of Israel [and us too!], 'See what God has done!'"
-- Numbers 23:23b

With much gratitude and love for each of you,
Scott & Gina