Coming home (again)

Lacey & I are coming home.  The doctors were pleased with her clinical evaluation, and her x-ray showed enough improvement to send us home.  We should be leaving UCLA within the hour...

 

Lacey is getting really fed up with taking her meds, so please pray for her cooperation and for patience and persistence for me & Gina.

 

We're still not out of the woods with her recovery from surgery, or with her pleural effusion, so let's continue to pray!

 

Nevertheless, praise God!

Another day at UCLA

Hi everyone, I hope you all had a wonderful Thanksgiving. Lacey and I are still here at UCLA. They had hoped to discharge her yesterday (Thanksgiving day) but decided to keep her because even though she did very well on the I.V. meds they would be sending her home on oral meds and the doctor didn't want to see her having to come back. They changed her meds to oral yesterday and added an additional diuretic and unfortunately the effusion has worsened; not worse than the original effusion but worse than yesterday. I'm very thankful for Dr. Levy's wisdom in keeping Lacey here. Now the plan is to keep her on oral meds until the problem is moving in the right direction. Once they see that trend they will let her  go home.

 

Scott and the kids are getting ready to come down for a visit and Scott and I plan to trade off. Thanks to everyone for continuing to pray. God bless you. :)

Pleural Effusion

Wow, yesterday was quite a day. It took us over four hours to crawl through traffic and get to UCLA. Lacey was admitted through the E.R. where we waited for five hours for a bed to become available. We finally made it up to our room at around 1:30 am. Lacey and I were both exhausted and miserable...yep we had our own private pity party. Today is a new day and we are both in better spirits. Lacey has been sleeping peacefully for the past three hours and I'm guarding her like a mother bear, I'm not letting anyone touch her so that she can catch upon the five + hours of sleep that she missed out on last night.

 

So the good news is that Lacey's pleural effusion is mild and it doesn't warrant having a chest tube to drain it. The doctors think that maybe her Lasix was decreased too quickly and when it was later increased it dried her out a little and just caused a snow ball effect that gave her some trouble. They hydrated her with IV fluids last night and today she is getting Lasix by IV. Her progress will be monitored today and through the night. God willing they will send us home tomorrow morning. Oh, I really hope so!

 

Well, the past few weeks have been a roller coaster of ups and downs and yesterday I have to confess I was wallowing in the downs but today I'm overwhelmed with gratefulness for all that has gone right and that this 13 month journey is at it's end. We might have a few more blips to deal with but Lacey's surgery was a success and all of this will be behind us soon. Yippee!

 

I will try to post another update tonight or in the morning but I might not have time so I want to wish you all a wonderful Thanksgiving day celebration.

Gina and the family

Back to UCLA

Gina and Lacey are headed back to UCLA as I type this. During a follow-up appt with the cardiologist this morning, she was diagnosed with pleural effusion, or liquid surrounding her left lung. That would certainly explain her difficulty breathing.

I think the plan is to do a minor surgical procedure to drain the fluid, and then monitor her response to Lasix. It could be a short visit (1-2 days), depending on how things go.

Specific prayer requests:

• Safe travel to UCLA. Gina will get there in the dark and in the rain. It's bad enough on the LA freeway and Westwood without bad weather.
• An available bed. Initial phone calls to UCLA indicated that there were no beds available. Gina will be able to room-in with Lacey, whether she's on the pediatric floor or in the ICU.
• Grace, peace, and joy for each of us. It's hard to be separated so abruptly.
• Discernment of the Lord's will and plan in this trial.
• To be home for Thanksgiving dinner, if He permits...

Thank you for your prayers, once again.

This is a picture of Lacey from this afternoon. You can see the toll that the pleural effusion is taking on her -- NOT! She is such a cheerful baby, even when she has to work harder just to breathe. What a trooper.

Coming home

Gina and Lacey are on their way home.  Lacey responded beautifully to the increased Lasix doses and shed the excess fluid in her lungs.  She is now breathing easier and doing better.  Praise God for His faithfulness, and thank you again for your prayers!

A few more details

Cottage is primarily watching Lacey for signs of heart failure.  Gina was not aware of a treatment plan.  While it could be discouraging that they are watching for signs of heart failure, I take it as a good sign that they are merely watching, because it means they haven't found any signs of heart failure.  Her pulse was a bit high earlier tonight (150's) and her O₂ saturation was a bit low (90%), but these by themselves do not indicate heart failure.  Her retractions were back to a level that is normal for her.

 

God is good, and He is faithful.

At Cottage SB tonight

Lacey (and Gina) will be at SB Cottage Hospital tonight for observation and a few diagnostic tests.

Recent events

Things have been going really well since we got home.  Lacey has been recovering nicely, coping with the pain and discomfort of her surgical site like a real trooper.  Occasionally, she has been grunting a bit when at rest and otherwise comfortable.  On Sunday afternoon (11/16), we noticed her first tooth coming through!  So add teething pain to her surgical pain.  Her appetite had been adequate, but not great.  Plus Jeremy and Scott are sick.

 

On Tuesday (11/18), the local cardiologist cut her Lasix from 16 mg/day to 6 mg/day.  He was not concerned about the grunting or fussiness, between the surgery being so recent and the teething.

 

Since then, we have noticed her breathing becoming more and more labored ("retractions"), and her appetite waning.  We had some routine follow-up appts at UCLA yesterday (11/21), and in general they were not very concerned about her symptoms.  With all the compounded circumstances (teething, sickness in the family), they figured it was as expected.

 

There was not much change through the night last night.  This morning Lacey was pretty mucousy.  Gina decided to take her to the pediatrician.  Our pediatrician is not working today, and the one there decided that she should go to E.R. as a precaution, since they would have the host of specialists available.  Gina is in her way there now.  They may want to increase the Lasix again and observe her overnight.

 

Please pray for grace for Lacey, wisdom for the doctors, and peace for us.

Home

We got home at 9:00 tonight (Wednesday). It's nice to be home, even after a "short" time away like this one.

Going Home day 5

So it looks like they are sending Lacey home today. She did very well last night and didn't need any pain medication. She's not quite her happy go lucky self yet but she has been smiling, laughing and playing a little from time to time. I'm sure each day will get better and better from here on out.

 

We spoke with the cardiologist today and he is very happy with how Lacey's heart repair looks; he said that the valve division looks excellent with very minimal leaking. It doesn't sound like the leaking is an issue but there is no guarantee that it won't require surgery later. Time will tell but one thing is sure, we have so much to be thankful for. No need to wait for Thanksgiving day. :)

Recovery day 3, pt 2 (postscript)

Jeremy & Riley are with us, as of yesterday.  It is wonderful to all be together again.  But this means that we are not as available to post updates.  I'm sure you understand...  :)

Recovery day 3, pt 2

It's been more of a rough day since the last post.  Lacey is not struggling to breathe, but she is working a little harder to breathe, and the doctors are trying to figure out what's behind it.  She was not easily comforted tonight, and it took a while for her to fall asleep.  After she fell asleep, the respiratory therapist came in to give her a cool air mask.  Of course this which woke her up, and it took about 30 minutes to calm her down and get her to go back to sleep.  We surveyed the wondrous cross together, and sang a few other similar songs, and she finally fell asleep while I prayed out loud over her.

 

They stopped her heparin drip at 11 pm, and are still determining a course of action.

 

Please pray for her breathing situation, her clotting issues, and her general fussiness.  She really needs rest, with as few interruptions as possible, especially after a rough day like today.

Recovery day 3, pt 1

Thank God Lacey is sleeping peacefully now but she has had a tough day. She's been pretty miserable. I wasn't able to console her and it seemed like everything I tried just bothered her more. I stepped out for a short while and when I came back her nurse told me that no one was able to calm her except "Andy" the intesivist who picked her up and immediately she was looking up into his eyes, enthralled with him. She fell asleep in 10 minutes. I'm so glad, I was getting really concerned.

 

This morning Lacey was transferred out of the cardiac ICU to the Pediatric ICU. This afternoon she will be transferred again to the pediatric floor and then she can go home either tomorrow or Wednesday. Probably Wednesday. It's such a relief that this is all coming to an end soon. I just have to say that you are all amazing friends and family. Your faithful prayers, physical help, and encouraging words have really lifted us up and helped us through all of this. We love you all and look forward to coming home soon.

 

 

Recovery day 2, pt 1

Mama and Lacey getting cozy! This is the first time Gina got to hold Lacey since surgery.

She's doing well today, drinking formula and playing when she's happy. Her chest lines were removed overnight, so she must be worlds more comfortable. Her voice is slowly getting less raspy from the breathing tube. So far there are no complications from the heparin. They still have to figure out a plan for blood thinners over the next few days, and after we come home.

It seems fairy likely that we can come home in the middle of this week.

Recovery day 1, pt 4

Lacey has had a bit of a rough evening, but not regarding her extubation.  She had to wait 2 hours before drinking pedialyte, and another 2 hours before drinking formula, and she was pretty hungry the whole time.

 

While she was waiting, her IJ (similar to an IV) line came out, so they had to insert an IV to make up for it, and that was pretty rough.  It took a long time for her to get settled after that, and she is finally drifting off to sleep now.  At least she didn't have a breathing tube to make her even more upset...

 

She will begin her heparin treatment tonight.  Please pray that our faithful God will protect her from hemorrhages, and give the various medical teams wisdom in how she needs to be treated.

 

Community Church of the SYV, we will miss you tomorrow morning!

Recovery day 1, pt 3

Lacey was extubated about 15 minutes ago! We are so happy and Lacey is much more comfortable. Yaaay!!!

Recovery day 1, pt 2

Lacey could be extubated in about 30 minutes if she keeps up at the pace she's on.  They have reduced her ventilator support to the minimum and adjusted her medications.  If she is alert enough, and breathing well enough with minimal support, they'll remove her breathing tube!

 

Gracious Lord, may this please you...

Recovery day 1, pt 1

Lacey did well through the night, and continues to do well today.  Her vitals look great.  She is doing much better post-op for this surgery than for her previous 2 surgeries.

 

She is still a bit puffy from surgery.  To try to get rid of the puffiness, they started a diuretic earlier this morning, and she is responding well so far.

 

Because she is still puffy, they will not extubate this morning.  However, as part of the standard extubation process, she received a steroid to reduce inflammation in her throat.  She is still on full ventilator support, but she manages to sneak in her own breath every now and then. If the swelling goes down they will pull the breathing tube this afternoon.

 

She had 1 femoral line removed overnight, and they expect to remove more lines through the day.

 

She has had a few small temperatures, which are assumed to be standard post-surgical fevers.

 

She even had some awake time this morning, and is awake as I type this.  She's not too alert, and not too happy, but she did manage to crack a smile once or twice.

Recovery, day 0

God is so good and so generous.  Let's begin with a list of prayers that have already been answered:

• God sustained Lacey perfectly during surgery.
• Her heart was repaired successfully.
• The imbalance/asymmetry in her heart was not a complication.

 

While the surgery took longer than estimated (about 10 hours total instead of 6), there were no surprises.  The surgery was longer because they lost an arterial line towards the end, and had to put in another one.

 

Lacey is stable and resting comfortably in the ICU.  Everyone appears pleased with her condition.  The first 6 hours following this type of surgery are a good marker as to how the patient will do.  If these 6 hours go well, the patient generally does well during the rest of recovery.  So far, it has been 4 hours, and she's doing great.

 

It is possible that she could go home after 5 days, but it's too early to say with any level of certainty.

 

Here is the plan for tomorrow (Saturday).  She will be on the ventilator through the night, so her body can rest and begin to heal.  If she continues doing so well, they could take her off the ventilator tomorrow morning.  She will be on light doses of aspirin through the night to prevent clots, and they will start heparin (blood thinner) tomorrow.

 

We want to thank each & every one of you for your faithful prayers.  We know that God's favor toward Lacey and His goodness toward us are directly related to your faithfulness in praying for us (not to mention His faithfulness to provide everything we need).  So many prayers have come from family and friends.  And so many prayers have come from friends of family and friends of friends that we've never even met.  We are so grateful for so many people standing in the gap for Lacey.

 

Thank you Nana for taking such wonderful care of Jeremy and Riley.

 

Thank you Grandma Brandt for waiting with us for those long hours.

 

Thanks also for everyone's encouraging comments within the blog.  They are a treat to find, and a joy to read.

 

A really neat thing happened today.  We met a family who lives in Santa Barbara, who were aware of our family.  It turns out that friends of ours know some friends of theirs, and the links in our prayer chain came back around to us.  They are in the room next door to Lacey.  It's wonderful to feel so far from home and make a connection with neighbors, brothers and sisters in Christ.  Thanks TerriLynne and John for helping to make that connection!  Please pray for their sweet baby boy Rudy, about 5 weeks old, who had heart surgery.  We gather from his parents that his progress has been up and down.  He has a sign on his crib, above his head that reads "Go Rudy Go!"

 

Lacey's neighbor on the other side is also from Santa Barbara, but we have not met the family yet.  Half of the kids on the cardiac ward are from Santa Barbara!

In surgery (pt 3)

We just got another call from the circulating nurse:

• The repair is complete.  Praise God: her heart is fixed!!!
• She is off of heart bypass.  Praise the Lord: her fixed heart is working!!!

 

Everything is going well so far, but it has taken much longer than anticipated.  Before closing her, they have to insert some lines into her heart, and fix some "bleeders" (areas of bleeding that are common to surgical sites).  The nurse did not sound alarmed or concerned about the bleeders.

 

We still have to contend with recovery, especially the clotting/hemorrhaging issues.  But we are so grateful for God's goodness, faithfulness, providence, and mercy, and for the countless prayers offered up on Lacey's behalf.

 

We should get the next surgical update in 2 hours or less...

In surgery (cont)

We got a call from the circulating nurse a few minutes ago.  All is going well so far.  She got prepped ok, and is "open" right now.  She should be on bypass by now.  The repair procedure should begin shortly, if it isn't already under way.

In surgery

We handed Lacey to the anesthesiologist at 7:30.  She's probably asleep by now (8:00).  The circulating nurse expects to give us the first update some time in the 10:00 hour.

Lacey update 11/06

We made it to UCLA and Lacey was admitted without any problems.  The new building is really nice, with lots of improvements over the old one.

 

Lacey's surgery will very likely be first tomorrow, which means they'll start between 7 and 8 a.m.  It could take 4-6 hours.

 

After a slew of bedside visits this afternoon with various doctors, it is obvious that blood clotting/thinning issues will be critical.  Since Lacey has both a genetic predisposition to clots and a history of clots when not on blood thinners, they are on heightened alert.  But they don't want a hemorrhage either.  It is a delicate situation with no clear answer.  Her open heart surgery alone warrants blood thinners for multiple reasons.  So the questions now are:

• Should she be on thinner(s) after surgery?
• If so, which one(s) and for how long?

 

The hematologists agree that a clot would be more dangerous than a hemorrhage, although either one is not good.

 

We're a little unsettled by their uncertainty.  But their uncertainty is reminding us to lean more on the Almighty, which is definitely not a bad thing!

 

The list of prayer requests from yesterday's entry (11/05) is still current.  But given this uncertainty, please pray that God would take control of their decisions, and the surgeons' decisions.

 

Thank you for your prayer support.  May God provide for all your needs as He has for ours!

 

With much love and gratitude,

Scott and Gina

 

Lacey update 11/05

Lacey's surgery was originally scheduled for Thursday Nov 6, but it has been postponed one day because of the surgeon's schedule.  For whatever reason, the Lord did not want her to go into surgery on Thursday.  So all of our plans have been postponed a day.  We'll drive to UCLA tomorrow (11/6) for pre-op and surgeon consultation, and her surgery will be Friday.

 

Some of you know what the surgery will involve, but I'll describe it anyway for those that don't.  :)  In a normal heart, the septum divides the left half of the heart from the right half.  Each half has its own valve that separates the ventricle from the atrium.  Lacey's heart has an A/V canal, which mean she basically has no septum, and a common valve that serves both "sides" of her heart.  During the surgery, they will put her on heart bypass so they can open her heart to do the repair work.  They will construct a septum either from synthetic material or from a graft of pericardium (heart) tissue.  Once the heart has been properly "divided" into left and right, they will construct 2 valves from her common valve.

 

Here are some specific things to pray for:

• That God would sustain Lacey through the surgery
• Wisdom & skill for the surgeon for a successful repair and division of valves
• That Lacey's imbalanced and asymmetrical heart anatomy would not introduce any complications
• Wisdom for the hematologist for how long to keep her on blood thinning agents, given her history for getting clots when she's not on thinners, and getting bleeds in the brain when she is on thinners
• That Lacey would be strong enough to come off the ventilator the same day as her surgery!
• Protection against post-surgical complications, like bacterial or viral infections
• Peace for Jeremy and Riley while we're apart
• Speedy recovery for Lacey
• That God would preserve us faithful, remove all fear, and use us for His wonderful purposes