Monday

Luke is really starting to improve for the most part. He's breathing easier and quieter. His sats are starting to run closer to mid 80%s instead of mid 70%. Heart rate is getting back to his before-surgery baseline. He's sleeping better, but still needs help turning over in the night. I'm so glad we're getting nursing 5 nights a week until he's sleeping through the night. We're still dealing with balancing his fluid. Dr. Kao's office said that the labs we did today looked "okay." We are adding another medication and repeating labs Friday or Monday. I'm a little surprised at how slow this recovery process is, but I'm glad we're headed in the right direction finally.

Saturday

Four or five snatches of sleep at home are better than no sleep at the hospital, even though it wasn't a great night. Luke desatted a couple of times during the night and his breathing was still ragged, but I think it's improving slowly. Luke is sleeping a few hours at a time and his periods of wakefulness are getting shorter for the most part. It was our first night of recovery without a nurse, and I'd say we did pretty well. I will look forward to our nursing returning Monday night though!

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Luke is so much closer to his regular self today. We've seen lots of smiles, and he's spent more time playing on the floor than laying on the couch. He was even up for family pictures this afternoon. Praying for a restful night with easy breathing. We're planning on taking him to church tomorrow. Hopefully the Lasix and Prednisone do the trick. His breathing seems to be better, but I'm still anxious for labs on Monday.

Friday

Luke's breathing turned labored, rapid, and shallow yesterday evening. We're at the hospital now about to get a chest Xray to see if there's anymore fluid building up over his heart and lungs. Praying we can get this resolved quickly and easily.

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Looks like Luke has a fluid volume issue. We had to do another blood draw and Xray to determine the best course of action. We may have to admit him later to give him some IV fluids (albumin) or we may have to put him back on Lasix (diuretic). For now we're taking Luke home and waiting for Dr. Kao to call us with blood work results.

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Heard back from Dr. Kao. She's putting Luke back on oral lasix (not admitting him to the hospital, yay!). Luke's pulmonologist also prescribed him some prednisone to help him breathe better. We'll work on his problems at home through the weekend, and have more labs done on Monday.

Tuesday

We hoped that simply getting Luke home to his own bed would resolve his sleeping issues. Unfortunately, that isn't true. He still woke up several times throughout the night, with his longest sleeping stretch being two hours. Thankfully we had Luke's home health nurse by his side every moment to help him through the night so David and I could get some much needed rest. I'm so frustrated and discouraged that he can't get more solid sleep than this! It is so pitiful that he will repeatedly say, "Help!" throughout the night, but he can't express what he wants or needs beyond that, and for the life of me I can't figure out how to make him more comfortable. This mamma just wants to make the hurt go away with hugs and kisses. I think heart surgery is just too complex for that!

Monday

Great job prayer warriors! Luke's BUN is 55. Not perfect, but decreased enough to take him home today! I will bring him back to Med City Thursday or Friday to redraw labs to make sure we're still in a good range with electrolytes. God is good all the time. We thank you for your very loving and specific prayers over the past many days and for the many days in the future. We will be so glad to be home!

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We can finally say the word: Home! We are in the car, officially leaving the hospital. Luke says: "Luke's going bye bye!"

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So happy to be HOME!

Sunday

Saw Dr. Kao late this morning. Luke's o2 sats are better, and his x-ray looks great. However, his BUN (measure of kidney function) is still quite high. He's in the 70s and needs to be in the 30s-40s. This is the only thing that is keeping us from taking Luke home. So we are holding his Lasix (diuretic) again today, increasing his fluids a bit and hoping for better numbers in the morning. Please join us in praying specifically for his BUN to be low enough in the morning to take him home! God is faithful, and numbers are not hard for him. He is able!

Saturday

David told me that he and Luke had a pretty rough night. Not a lot of sleeping, and some de-satting into the 60%s and 50%s. Now ranging in the low 70%s-low 80%s. So far quite unimpressed with the care on the inpatient floor. The nurses, Lord bless them, seem bewildered about his sats and his cardiac status in general. Anxious to get his x-ray and have it read. I think the nurse practitioner from CHSU rounds down here, so maybe we can talk to her and see if we need to move back to the unit. I can't take this baby home with sats in the low 70%s.

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Feeling much better after talking to the nurse practitioner from the CHSU. She told us that sats between 70% and 80% with occasional desats into the 60%s when he's mad are perfectly acceptable. Luke has been satting high 70%s to mid 80%s the last few hours. His x-ray and labs looks great. She said we are certainly welcome to stay in the hospital another night, but she feels confident sending him home today. We feel he will rest and recover much better at home where maybe he can get some solid sleep. We will check in with Dr. Kao when she rounds sometime today (hopefully sooner rather than later), then we should be headed home. So relieved, but still somewhat anxious. I really don't want to get him home and then have to turn around and bring him back. We still really need your prayers for the days ahead.

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From David:

We are definitely staying here in the hospital for at least another day. Cardiology wants to make sure his fluids/labs are all in good balance and they want to see another chest x-ray in the morning. Hopefully we will have a good night tonight and get to go home in the morning.

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Just saw Dr. Kao. She said that Luke's BUN is a little high and potassium is a little low. She thinks he's a little dehydrated. We will stay another night and redraw labs in the morning after holding his Lasix and giving him a little more fluid for the rest of the day. I'm not looking forward to another night on the floor, but we definitely DO NOT want to take him home and then have his electrolytes to get out of whack. We need to get his fluid levels in balance. So, another day...maybe home Sunday.

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Luke finally drops off, so I get to lay down on this unbelievably uncomfortable pull-out hospital couch, then the baby starts moving. I guess I'd better get used to one kid or the other keeping me awake!

Friday

Look! No oxygen!

Things have happened very quickly today. I went back to the hotel to take a nap after staying with Luke last night. When I got back, they had completely weaned Luke off of oxygen and taken off his nasal cannula. His new chest drainage tube stopped yielding, and his X-ray this morning looked crystal clear, so they took out the tube this afternoon. Once it was out, they started making plans for us to move down to the regular patient floor tomorrow. Then a bed was ready this afternoon, and Dr. Kao gave the thumbs up for us to move today. We took Luke for a wagon ride and found all our stuff moved out when we came back. So now we're on the regular patient floor. If his X-ray and labs all look good tomorrow morning, we're going to push to take him home tomorrow. Soooooo ready to go home, but DON'T TELL THE BABY! (We're still a little superstitious.)
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Approx 10 pm

Luke's sats were running a little low (low to mid 70%s) when I left tonight. Don't really feel confident about being on the floor and not in CHSU with that going on. Please pray that Luke will continue to get better and not worse so we can go home tomorrow or Sunday.

Thursday

Approx 9:45 am

In rounds this morning, the docs told us that while the fluid around Luke's heart is improving, the fluid around his right lung is getting worse, even with increased diuretics. Also, the numbers indicating kidney function (Creatanin and BUN) are also declining. This morning they will be putting in a small drainage tube to drain off the fluid. This is a bedside procedure and shouldn't be painful with the local anesthetic and sedation they will use.
Additionally, Luke is still not sleeping for much more than an about an hour at a time. Usually not longer than 30 minutes. Doctors say it's probably a combination of just being in the ICU and the side effects of some of the drugs they're giving him. We're going to try Melatonin tonight to see if we can help him sleep better. Nobody has said the word "home" yet, so we're not sure how much longer we'll be here. We're all more than a little sleep deprived and appreciate your prayers that God will sustain us and give us endurance.

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Approx 1:45 pm

They are putting in the new drainage tube and trying to get a PICC line right afterward. the procedure is bedside, but we cant be in there. Probably 45-hour before we can go back and see him.

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Approx 4:45 pm

Luke's new drainage tube is in. They also placed a PICC line for IV meds and blood draws and took out his Central Line (less risk for infection). Luke's already drained over 100cc of fluid from around his lungs, which should help him breathe better, feel better, sat better and require less oxygen. He has a hard time getting out from under the sedation drugs, but he's feeling better now. We're about to go on our second wagon ride of the day. 
Thank you for your continued prayers.

Tuesday

Felt very encouraged after rounds this morning. We just took out his pacemaker wires. We are turning down his Milranone (heart med) and it will go off at 4:00. Heparin came off last night. Oxygen flow down from 7 to 5 liters/min. Nitric is still off . Sats are staying pretty much in the 90%s. Heart rate and respiration rate are still a little high, but seem to be improving. Physical therapy came this morning and made him walk from his bed to the hallway and back. It touched my heart that Dr. Tia knelt in the hallway and cheered him on. Luke hated every second of his little walk, but once it was over and he was back in bed, his whole attitude is different. He's smiling some, talking more, and whining less. After a really difficult day yesterday (whining and crying constanly), we needed some wins today. Now if we could just get Luke to sleep for more than 45 min at a time, we would be well on our way back to normal. Thank you all for your prayers and love.

Monday

The sedatives we have been trying to help Luke sleep the last couple of nights have not been working. Luke is sleeping for 15 min- 1hour long stretches usually, with 1 1/2 hours being the longest we've seen him sleep since Wednesday. Mamma and Daddy are very tired too. Please pray that Luke can get some solid rest so that great healing can take place!

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Just heard a couple of new ones from Luke after his echo just now: "I want night night please." Then I few minutes later: "I want sleep please." Melt your heart. My poor sweet heart hero is so sleep deprived on top of everything else!

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Sleeping sideways in the bed. Nitric oxide is off! Nobody tell Luke. Heart rate and respiration rate are still high, but o2 sats are still high 80%s.

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From David:

Luke's heart-rate is climbing and his breathing is labored. Not really sure what that's about, but he just fell asleep, so hopefully he'll calm down and have a quiet night. His sats are good and his bp is good, so he may just need to get more fluid off of his heart. He's been a little bit more himself today and even drank some water and took a (1) step when we got him out of bed. We are still a ways from home, but maybe we're making progress.

Sunday

We had some scary moments last night--saw some screaming and crying and some o2 sats in the 30%s and a pretty blue baby. Luke wouldn't cough, so the RT finally had to suction him through his nose, which wasn't painful, but very scary to him and hard for mom to watch. Since then, his sats have been better (mid 70%s), but his heart rate is still elevated in the 140s. Thank you to all of you who were up praying for us last night and to those of you praying now. God is good all the time, and we definitely received his love and comfort. 

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Approx 3:30 pm
Luke is doing better this afternoon. He got his last chest drainage tube out this morning before I left. He is still requiring a lot of help to breathe: still on nitric oxide and 100% oxygen. His heart rate is still high at 130, but his o2 sats are better at 85-90%. David got him up out of bed for awhile holding him in the chair, and he even stood up for a minute. Dr. Kao thinks his lower sats are probably due to not getting enough blood to his pulmonary arteries because they are so small. We'll do an echo tomorrow to find out more. In the meantime, we thank you for your prayers that Luke's sats and heart rate will improve, and that infection stays far away from this room.

Post-Op Day 3/Saturday

Got to hold my brave baby boy.

Luke is doing fine today. We got one of his chest drainage tubes out this morning, which he got through with barely a flinch (so brave!). We're almost up to full, continuous feeds. We've gone down on diuretic. We had some trouble maintaining his o2 sats, but we were finally able to wean him of of the nitric oxide. He's still on 100% oxygen. Sats have been high 70%s most of the day. We got him out of bed and in my (ever decreasing) lap for about an hour. Tomorrow we will attempt helping him to walk around a bit. I know that he is going to hate that, so please pray that he will be brave and have minimal pain while we do this....and that we don't pull it any tubes by mistake!

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We're having some trouble tonight with Luke's o2 sats. Ranging from 60-75%. They put him back on the nitric, but it doesn't seem to be helping him much. I'm certainly not the doctor, but Low sats and a high heart rate (130s - 140s) make me suspect an infection might be brewing.

Post-Op Day 2

From Rachael:

We had some bumps this morning, post-op day 2: we had some trouble figuring out Luke's fluid volume level. He was fluid positive, but was having trouble keeping his blood pressure up. The doctors began using a pacemaker late this morning to help get more blood pumped out to his body. Once we gave him some more volume (fluid in his blood), he started to even out gradually. Right now he's satting in the low 90%s, which is great, and his blood pressure is spot on too. We've seen some life in those sweet brown eyes. About to give him his bath before he goes to sleep for the night (riiiight...), then x-rays at 3:00.

From David:

Luke has had a good day. He's grumpy and awake a lot more. We took out his art line, his foley catheter, quit pacing his heart, and turned off some of his meds, so everything is moving in the right direction. He still has enough coming out of his chest tubes that we aren't taking either of them out yet, but hopefully will soon. He's talking a little bit, but mostly just to tell us "no" to everything :) Thank you all so much for your love and prayers.

From Rachael:

Luke has had a very stable day. He wakes up about every 30 min- 1 hour alert but very grumpy. We got rid of his arterial line and his Foley catheter today. We get excited anytime we get to lose a piece of plastic. Also, Dr. Tia took him off his pacemaker this morning during rounds, and his blood pressure and o2 sats are maintaining. We're weaning down on nitric oxide and might get to turn that off soon. Luke is still draining enough out of his chest tubes so they don't want to take either of them out yet, but we're moving in the right direction in that area as well. Thank you all so much for your continued prayers for healing and for infection and other curve balls to stay far away from this room.

Post-Op Day 1

Approx 9:30 am

Luke's cardiac numbers are still solid. The numbers that measure kidney function are a little elevated, and he's fluid positive so they are upping his diuretics today. They are planning on taking him off of his Precedex (sedation) drip and will mange pain through as needed doses. They also plan to take out his RA (right arterial) line today and his Art (arterial) line tomorrow. That will allow him to get up out of bed. It really hurts him to cough, and so we have a really rough time every time he needs to clear some secretions. Please continue to pray that we head in the right direction, avoid infection, and keep his pain under control.

Surgery Day

Approx 6 am

I know who goes before me.
I know who stands behind.
The God of angel armies is always by my side.
The One who reigns forever 
He is a friend of mine.
The God of angel armies is always by my side.
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Approx 8 am

They just took Luke back. No tears.

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Approx 9 am

Just visited with Dr. Mendeloff's nurse, Kathy. She's all smiles. They just made the incision, things are so far so good.

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Approx 12 pm

Kathy just updated us. It took a long time to get through scar tissue, but Luke is on the heart lung machine and they are in the middle of the repair now. Should be another hour and a half or so.

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Approx 12 pm (ish)

Luke is off the heart/lung machine, and they're closing up. 

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Approx 1 pm

Ok. Surgery's over. Luke came off the heart lung machine just fine. All his numbers look good. It'll be about another hour and a half before we get to go back and see him. They would like to take out the breathing tube within 24 hours, but we'll see how he does.

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Approx 3 pm

Still waiting for the nurse to call us back to Luke's ICU room. Getting anxious, not going to lie. 

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Approx 4 pm

We're back with Luke in his room. They were able to successfully take out the breathing tube already. He's not really awake yet, but he's stirred a few times. o2 sats are mid 80%s to 90. He's on a bit of oxygen, but they expect to be able to turn that off soon. Now some hard work of managing his pain and helping him recover. 

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Approx 8 pm

Luke continues to do well, although he has needed a few doses of extra pain meds. He wakes up periodically pretty unhappy. So far he has asked for me to pick him up, for his daddy, to watch Your Baby Can Read, and "I want iPad please". Left Luke's room tonight about 7:45 to go to dinner then bed. David is such a good father and husband to take the first night's watch. Planning on heading back to the hospital as soon as shift change is over in the morning.

Fontan Tomorrow

Fontan Tomorrow

We had Luke’s pre-op appointment and met with his surgeon, Dr. Mendeloff today.  Everything went very smoothly, except Luke really didn’t think much of getting his blood drawn or his x-ray taken (as expected).  Really, from the Mamma’s perspective, it was awful having to stand by and let them stick my three year old who I know was terrified and in pain.  I’m extremely glad that all his sticks tomorrow will take place while he’s under anesthesia.   

Luke already received his Beads of Courage for today and for surgery tomorrow.  Each bead represents some type of procedure that he will undergo:  x-ray, needle stick, insertions of breathing tubes, drainage tubes, foley catheter, central lines, the chest closure, and of course the surgery itself.  When the pre-op nurse handed the strand to me, I was completely overwhelmed at the visual representation of what Luke is going to go through tomorrow.  He is such a hero!

When we met with Dr. Mendeloff, Luke was very comfortable around him, and asked him to pick him up.  David and I were both glad that Dr. M got to see Luke awake and happy, since in the future he will likely only see him asleep or pretty mad.  

Dr. Mendeloff explained the details of the surgery for us tomorrow and answered some questions we had.  I basically had the gist of the surgery right, except for a few details.  

Many of you might be interested in some general things:  First, Luke is first case, so we will arrive at the hospital at 6:00 in the morning.  Since all of the pre-op chores were done today, they expect to have him in the OR by 7:00-7:15.  It should take about an hour for the anesthesiologist to get him to sleep, intubated, and his IV lines in.  Then Dr. Mendeloff will come in.  It should take another hour to get Luke’s chest open and cut through scar tissue (from both previous heart surgeries) to get to his heart.  They will then put Luke on the heart/lung machine to oxygenate his blood during the surgery, but we are relieved to know they will not have to stop his heart (better to avoid the complications he’s had in the past that came with starting his heart again).  The whole surgery should take about four hours start to finish, but it depends a lot on how long it takes to get lines (Luke is still a very hard stick) and cut through the scar tissue.  

Second, Dr. M told us that kids typically stay in the hospital for recovery between 5 days and a few weeks.  The length of time in the hospital primarily depends on how long fluid drains out of his chest after the surgery.  Because of Luke’s anatomy (specifically the small size of his pulmonary arteries), we might anticipate a hospital stay on the longer end of the spectrum.  Dr. M assured us that he is very aware of the trouble Luke had taking out the breathing tube after his heart cath, but he hopes to be able to extubate him by Thursday morning.  As always though, we’ll take our cue from Luke.  

Third, the mortality rate for this surgery is 2-3%.  Something we’d rather not even think about, but those are pretty great odds.  

Fourth, Luke will go home with o2 sats between 85% and 92%.  The further we get from surgery, his sats should increase slightly, up to 95% and stay there.  

Fifth, in 6-12 months Luke will go back for another heart cath.  They will check the status of the graft and the fenestration (basically a pressure release valve) that Dr. Mendeloff will put in the graft.  If pressures look good, they may be able to close the fenestration, but if they can’t, it can stay open indefinitely with no ill effects.  

Finally, we are so pleased with the team that will be taking care of our little heart hero tomorrow.  The surgeon, anesthesiologist, cardiac intensivist (doctor in the heart unit), and ICU nurse are all very familiar to us.  We are blessed to have so many wonderful people working on Luke tomorrow.  

We thank you for the prayers we know you will be sending up on our behalf tomorrow.  We need them desperately.  We will post updates on facebook and text message as much as possible.  

Blessings,

Rachael, David, and Luke