Sunday

Having a rough time with Luke's o2 sats. 90% sure it's cardiac and not respiratory. We may be moving his surgery up, but don't know how soon, or when we'll know for sure. Please pray for strength and endurance for us.

Tuesday

Finally got Luke home again. Maybe this time we can stay there!

Boyhood

Luke's Homecoming in Pictures

Luke's 1st Christmas

Luke's 3rd Heart Cath

Apparently, a one-night stay in the hospital translates to Luke into two weeks. Luke’s heart catheterization was two weeks ago tomorrow, and he’s still in PICU.
Sorry for the long wait between posts, but I already wrote a post last week that got erased. It’s taken me a week to find the energy to write another one.
On Monday, the 11th, we brought Luke back to Medical City for a heart cath (remember, that’s an invasive test in which they insert a catheter into one of Luke’s major blood vessels and send it to his heart to take pictures and measure pressures, etc). After a slight delay in getting the cath started, Dr. Kort came out about 45 minutes before we expected him. He told us that during the procedure, Luke’s heart went into a very dangerous rhythm. They had to use shocking and chest compressions to get him out of it, but he returned to a normal rhythm. I wish that was the end of our problems, but it was just the beginning.
The pressures in Luke’s heart are borderline, not exactly what they wanted to see, but not dismal. Also, Luke’s pulmonary arteries (the key to doing his next surgery – called the Glenn) are about half the size of a normal 8 month old. Dr. Kort (heart cath guy), Dr. Kao (Luke’s cardiologist), and Dr. Mendeloff (heart surgeon) conferred and decided that although Luke is not an ideal candidate for the Glenn surgery, it’s more dangerous not to do it. Luke’s arteries haven’t grown at an acceptable rate with his first shunt, so it’s unlikely that they will grow if we just replace the shunt with a bigger one. On the other hand, Luke’s body is beginning to outgrow the shunt he has, so something must be done. It seems that although the Glenn isn’t a perfect option, it’s really the only one we have. Dr. Kao told us that because of the anatomy of Luke’s heart, he’s likely going to have a very tough time after his next surgery as his body adjusts to the new way his heart pumps blood to his lungs. I don’t know exactly what hurdles we’ll have to face, but there are a lot of things to fear.
I stayed at the hospital that night with Luke. As he drifted off to sleep and throughout the night, instead of his heart rate slowing to the 100s as it normally does, it crept up to the 140s and 150s. The cardiac intensivist on call, Dr. Stromberg, said he didn’t know why his heart rate was getting faster, but he suspected an infection, and he assured us that Luke’s heart was in a normal sinus rhythm (not the arrhythmia we fought for 5 weeks after Luke’s first surgery). About 4:00 am Luke’s o2 sats started declining, and it didn’t make any difference if he was on the ventilator or off. He began working extremely hard to breathe. The docs put Luke on some new medication and hooked up his ventilator to nitric oxide to help him breathe better. It turned out that Dr. Stromberg was right about the infection. Luke came up positive for CMV (Cytomegalovirus). It’s a common virus, but did a number on Luke. They decided not to pursue anti-viral drugs because by the time they figured out what the infection was, Luke had gotten through the worst of it (so we thought), so the drug had more cons than pros at that point. They gave him a healthy dose of antibiotics because something pneumonia-like was growing in the trach culture. Over a period of 8 days, they eventually weaned Luke off the nitric oxide, down on the oxygen, and were able to put Luke back on his home ventilator. He was feeling quite a bit better when they discharged us on Tuesday morning.
Almost as soon as we got home, Luke started declining. Before his heart cath and the infection, Luke was able to be off the ventilator all day and used very little oxygen. At home, Luke would not tolerate being off the ventilator for more than a minute, and we were continually increasing his oxygen to keep his o2 sats at an acceptable level. In the morning he was running a fever, had lots of thick lung secretions, and was working extremely hard to breathe. I went ahead to try and see some clients that I hadn’t been able to see the week before, and David stayed with Luke for the morning. He called Dr. Stromberg at the PICU. He suggested that we tweak a few settings on Luke’s vent. After a few hours of Luke continuing to decline, Dr. Stromberg told us to bring Luke back to the hospital. David interrupted my counseling session to tell me that we needed to take Luke to the ER.
Luke tanked on the ride to the ER. David drove, and I rode in back with Luke. His o2 sats declined steadily and bottomed out in the 30s. Suctioning and 4 liters of oxygen couldn’t get them to come back up. So I played EMT and bagged Luke (oxygen bag giving him breaths through his trach) there in the back seat of the car. To my horror, Luke had a seizure. I was surprised how calm I was able to stay, though of course I was extremely worried. After several minutes of bagging, Luke’s sats came back up to the 70s (normal range), and I was able to put him back on his ventilator.
When we got to the hospital, I took Luke in to the ER while David parked the car. Luke was stable, so they put us in a room. They got x-rays and blood work, and got an IV started after the second stick (not bad). To our relief, Dr. Stromberg came all the way down to the ER from the PICU to see Luke. They decided to admit him back into the PICU, and we got up to our room on the 5th floor (home sweet home) about 6½ hours after we arrived at the hospital.
The only culture that came back positive for infection was the CMV culture (tell us something we don’t know). Luke did have some yeast growing in his trach, but we’re told it’s unlikely that it’s responsible for making Luke’s lungs so sick. They started treating the yeast infection with an antifungal medicine, and it’s a good thing that the infection was caught before it crossed over into Luke’s blood stream. Evidently, a yeast infection in your blood is seriously bad news. Praise God for all your prayers. I’m convinced that God heard and stopped the infection from traveling to Luke’s blood.
Probably this second round of illness was simply due to not having time to get over the infection in the first place. Luke has improved markedly with rest, antibiotics, antifungal medication, and time on the hospital ventilator. They have weaned Luke’s oxygen down to almost a normal level, and he’s now back on his home vent, though with increased breathing support settings. We haven’t attempted to take him off the ventilator at all, he’s still requiring quite a bit of breathing support. Luke’s been awake a lot of the day, playing with his jungle and smiling. He is pretty close to being back to his normal laid-back self. I missed that sweet little smile. It was agony sitting next to Luke’s bed and him just looking at me pitifully, as if to say, “Mamma, help me. I don’t feel good.” There was nothing I could do but wait and pray.
We expect them to discharge Luke early this week, Monday or Tuesday. Because of this illness, Dr. Kao thought it would be wise to move Luke’s surgery back a few weeks. We’ll return to Medical City for the Glenn procedure on Thursday, Feb 18. Like I said earlier, there’s a lot to be afraid of. This surgery is going to be risky. It’s going to be touch-and-go for awhile. We’re scared. Part of us wants to jump in and get it over with, but part of us is dreading Round 2. Please pray that Luke continues to do well. We need this time at home before his surgery to be a time of renewal, rest, and courage gathering. Thank you all for your prayers and your encouragement. We love you.

Rachael, David, and Luke

Friday

All of Luke's cultures came back negative for infection! Luke did have yeast in his trach which caused his lungs to be very sick, but thankfully, they were able to get it under control before the infect spread to his blood stream. Luke's feeling better, so we'll probably stay in the hospital for just a few more days.

Tuesday

Home now, but worried about Luke's breathing. It seems like he's working way too hard...maybe he just needs to destress and get used to being home. I hope that's all it is.

We called one of the docs on the PICU. He said that it's expected that Luke might have a tough time adjusting back to his home vent and less oxygen. Luke will also need time to fully recover and return to his "baseline" o2 sats and HR. He suggested that we adjust some settings on Luke's vent, and give him all the oxygen he needs. I guess I just hoped that as soon as we got Luke in his own bed he would be completely back to normal. I guess that's not the case. I think we're going to be okay though.

Monday

They're going to keep Luke in the hospital one more day. Finish up his antibiotics, and make sure he does fine on his home vent with home vent settings. We should be leaving tomorrow. Dr. Kao decided she wants to delay Luke's surgery for a week to allow him time to recover completely from his infections. Thanks for praying.

Sunday

Looks like we will probably be able to take Luke home tomorrow. We need the hospital to check Luke's home vent out, make sure he does okay on his home vent settings for 24 hours, get things set up so our home health nurses can give the last doses of antibiotics, then we're out of here. Thanks for your prayers.

Saturday

Wish we new the plan of action for busting Luke out of the PICU. We love everybody here, but it's time to go.

Wednesday, Part II

Finished Luke's blood transfusion. Heart rate is hanging out now around 180. o2 sats are in the 70%s. Stopped the Nitric, but still on 100% oxygen. Nervous because doc doesn't know why his heart rate is so high. They've increased his Amioderone and Digoxin. Hopefully that will bring his HR down slowly.

Wednesday, Part I

Luke's better today. They're weaning off the nitric oxide and going to give him a medication that can have the same effects. His heart rate is still uncomfortably high for us (160s), but o2 sats are better. They finally got an IV in this morning, so no PIC line. Doc believes Luke is anemic, so they're going to givehim blood transfusion. Gearing up to live at Med City for another few days.

Tuesday

Looks like Luke got an infection. It's affecting his o2 sats pretty seriously. We've seen 20%s and 30%s today. Nitrous oxide is helping some. Looks like we'll be in the hospital for a few days. Maybe getting a PIC line tomorrow to avoid turning Luke into a pin cushion. Thanks for your prayers.

Monday Report

Talked to Dr. Kao. They feel that doing Luke's next surgery as planned in February is our best option. Luke experienced some heart rhythm issues during the cath, but they were able to shock him back into a normal rhythm. Praise God. He's happy, kicking, and off the ventilator right now. Spending the night in PICU, then home in the morning. Thanks for your prayers everyone.

Merry Christmas and Happy New Year!

Well, we've been home for about three months now, and I wanted to update everyone on how Luke is doing.
We had a fabulous first Christmas as a family. David's parents came down to visit for a few days just before Christmas, and my parents came for New Year's. That meant that we got to spend Christmas with just the three of us together. We even got out the video camera for the first time to document it. It was so nice to have just the three of us celebrating each other and celebrating Christ's birth. This has truly been a blessed year, but not without sacrifice. The difficulties we've been through have made it that much more special and sweet.
So, how's Luke doing?
First of all, he's growing like crazy. The pulmonologist weighed him in yesterday at 16 pounds, 7 ounces. You can see in our picture how chubby his cheeks and arms are getting! One of the great blessings of Luke having a trach is that he also got a semi-permanent feeding tube called a G-button. Luke gets almost all of his nourishment through that tube, instead of relying upon his skill at eating by mouth to get calories. I'm told, that when I was an infant with heart problems, I had terrible trouble eating and gaining weight. Most babies with heart issues are also small and sickly because they expend more calories eating than they gain, making it very difficult to reach a healthy weight. While Luke is still low on the growth charts, he is gaining on them, making life easier for everybody. He mostly is in 6-9 month clothes (though he has short legs like his momma). We are making progress on feeding Luke regularly too. We gave up on trying to get him to take a bottle. He just flat refuses. Instead we moved on to feeding him solids. He's doing relatively well with this. Each bite of delectable fruits or vegetables has to be chased with sucking on a pacifier, but he eats a jar a day. His favorites seem to be bananas and peas. He won't have anything to do with prunes.
Developmentally, he's still behind. At eight months, he rolls over seldom, almost never all the way onto his tummy (he HATES tummy time!). He can sit up for a few minutes with us only holding his hands for support. We are having trouble getting him to put any pressure on his feet when holding him in a standing position.
Pre-game for round two starts on Monday. At our last visit to the cardiologist just before Christmas, Dr. Kao confirmed that Luke is indeed beginning to outgrow his shunt that they placed in his first heart surgery. His oxygen saturation numbers are gradually trending downwards as expected. Unfortunately, his pulmonary arteries are still quite small, so small in fact, that they might have trouble doing the planned next step of the surgery. Let me explain it the way that I understand it: all of the blood vessels from the upper half of our body flow into one vein called the Superior Vena Cava (the vessels from the lower half of the body go into the Inferior Vena Cava). Normally the Superior Vena Cava then takes the blood into the heart through the Right Atrium, then the Right Ventricle, then to the lungs via the Pulmonary Arteries. (Then from the lungs, back to the Left Atrium, then the Left Ventricle, then out to the body to circulate again). The hope is that during this next surgery, called the Glenn procedure, Dr. Mendeloff will disconnect the Superior Vena Cava from Luke's heart and reconnect it to the pulmonary arteries to take blood directly to the lungs without having to go through the broken right side of Luke's heart. That's somewhat tough to do with small pulmonary arteries (to my understanding). So the measurements that they take on Monday during Luke's next heart cathertization are going to determine if the Glenn is feasible. If it's not, there is still the problem that Luke is outgrowing his shunt, so something must be done. Dr. Kao says that it's possible we may just have to replace the shunt he has with a bigger one, to buy him more time and hope that his pulmonary arteries grow to allow them to do the Glenn. This is essentially step one again--we won't be gaining anything by replacing the shut (except buying more time), so Luke will still have two more heart surgeries to go. Of course the fear is that if his arteries haven't grown yet, they might not ever. We don't know what happens if his arteries don't grow. I think Dr. Kao's philosophy is that we'll cross that bridge if we get there. Right now, surgery (of some kind) is scheduled for February 4. We are told recovery time should be about 1 week. I admit I'm very fearful about this time frame. They also told us before Luke's first heart surgery that his recovery should take between 1 and 2 weeks. We we're in the hospital a total of 20 weeks because of all the complications post surgery.
Meanwhile, Luke has been sleeping A LOT lately. What happens when kids grow? They sleep a lot. Our hope is that God is answering our prayers for bigger arteries at this moment, causing Luke to need more sleep because of this growth spurt. We won't know until Monday after Luke's heart cath, but we hope everyone will pray that Luke's arteries will be big enough for them to proceed with the Glenn.
We visited with Luke's pulmonologist (lung doc), Dr. Copenhaver yesterday. Luke is doing fantastic in this area. Since mid-December, Luke has only required a ventilator for 8 hours while he is asleep at night. Which means for 16 hours a day, we don't have to worry about being connected to a vent. When Luke's in his bed, he still is connected to a big tube which delivers humidification and oxygen (when needed) to his trach. We're still getting used to getting Luke around the house. It takes a lot of effort to haul Baby, portable suction, pulse oxcimeter (monitors heart rate and o2 saturation), and o2 tank (PLUS a swing and a few of Luke's toys) into the living room, but we're getting the hang of it. It helps to have a nurse around most of the time, but times we have just to ourselves is really nice too.
Luke's pulmonologist has also explained to us our road map for getting Luke to breathe like a normal kid. Our first step is to have Luke on the ventilator for only 8 hours at night. Check. We have to wait until after Luke recovers from heart surgery to do the next step. We will return to Our Children's House (goody) for a three day stay where Luke will have a trial off the vent around the clock. They'll do a blood gas test every morning. If everything looks okay, we get to leave the vent behind. The next step is to use a speaking valve (also called a passy-muir) on the end of Luke's trach. This valve allows Luke to breathe in through his trach, but not to breathe out. This forces him to breathe out through his nose and mouth, forcing air over his vocal chords, thus allowing us to hear his voice. We've already done very brief trials with the speaking valve (1 minute or less). Luke really is having a tough time with it at this point. Dr. Copenhaver said that it could be that he's not quite ready for this step yet--it will go a lot more smoothly when he's ready. After Luke is able to use the speaking valve around the clock with no problems, then they will cap the trach. At that point he'll be breathing in and out through his nose and mouth and not using the trach at all. When he masters that, then it will be time to remove the trach (also called decanulation).
It's easy to get really excited at the thought of Luke getting decanulated. It means we'll finally have a chance at starting a relatively normal life with Luke. It'll mean we won't have to hire a nurse to babysit if we want to go out to dinner. It means we can take Luke swimming, leave one less diaper bag (full of emergency trach supplies) and the suction machine at home, and it means we won't have to torture him anymore doing trach care after his bath. It'll be a good day. Today though, we're focused on getting Luke through this next heart cath, then spending as much quality time with him before this next surgery. We're scared. We're dreading it in a lot of ways. Sometimes I think I'm so worn out that there's no way I can dredge up the energy to face another day (let alone weeks or more) at the hospital. But God was faithful before. He'll be faithful again. He loves Luke even more than we do, and we have to trust him.
I'll post another note letting everybody know the results of Luke's heart cath. Thank you for your prayers for these upcoming procedures. We love you.
Blessings,
Rachael & David