Luke's Next Surgery

So we went to the cardiologist today and talked about Luke's next surgery. He's going to get a heart cath sometime in January to do extensive measurements on the pressures and sizes of all the stuff in his heart, then we will hopefully do his Glen surgery (the second of his three planned surgeries) at the end of January/first of February. The problem he has is that his pulmonary arteries haven't grown like we hoped they would, and so there is a possibility that they won't be able to do the surgery. If that happens they will go in and replace the shunt he has with a bigger shunt, and hopefully do the Glen surgery later after his pulmonary arteries grow more. His shunt connects his heart to his lungs, and he's outgrowing it, so they have to do something. The problem with putting in a bigger shunt is that it may not result in his arteries getting bigger, and then they still might not be able to do the Glen surgery.

So, we need everyone to pray that his arteries grow nicely, and that when they do the cath in January everything will look good for an easy surgery (as easy as open heart surgery on an infant can be).

Rachael and I are anxious and worried, but we pray that this bump in the road won't turn into a mountain like our last time spent in the hospital.

Thanks for your prayers,

David

Baby Dedication

Luke's Thanksgiving

Grandpa*

Gigi and Grandpa*

Uncle Blake

Aunt Rebekah and Uncle Mike

*"Grandpa" needs a new name!!

Wednesday

Luke started bleeding from his trach around noon today. He turned blue before Dave was able to suction the blood out. ER tests were normal, but he has a viral infection. Sent us home with some medicine to give as a breathing treatment. Luke's stopped bleeding from his trach and seems to be fine now. We're all now enjoying family in for Thanksgiving. God's really good at adding things for us to be thankful for.

Monday

saw Dr. Kao today. She's very happy with Luke's progress and decided to wean down one of his heart medications. She doesn't need to see him for a month (unless we have problems with his sats), which means surgery won't be until January at the earliest. We're going to try to hold out for longer. Yay Luke!

Thursday

Luke did a total of 11 hours off the vent today. Passed his trials with flying colors. He says: "Momma, I don't need a vent. Can you throw it out the window for me please?"

Thursday

We had a great visit with the neurologist today. EEG came back completely normal (Luke has never had a completely normal test in his life...inside the womb or out), and they are taking him off his anti-seizure medication. Neurologist doesn't need to follow-up for six months. One less med... one less specialist... one less appointment. Feels good.

Sunday

Just finished putting Luke through his second crash-course in hanging out with our loud friends. He only cried for 3/4 of the time. He actually grinned when I put him down in his crib when we got back home. You could literally see his sigh of relief. You'd think with all of the beeps and whirs his equipment makes he'd be used to noise... not so much.

Thursday

Just got back from Dr. Kao's office. Echo shows that Luke's shunt is still doing what it's supposed to, but we're probably looking at moving up the surgery until end of December or early January.

Home Sweet Home

Many of you have been asking me to post a note, and I'm sorry I haven't until now. Life, as you can probably imagine has changed so much. I'm busier than I've ever been in my life (including grad school), and honestly more wiped out than I've ever been in my life (including post c-section with a baby in NICU), so finding time to write a blog post has not been on the top priority list of things to do.
The last note I wrote was the night before we left Baylor and came home. What a crazy night that was. It was so much like a bizarre dream, I'm not sure it really happened. Our home health nurse (who turned out to be our favorite one!) met us at the hospital. At 8:15 the EMTs showed up and we processed Luke the heck out of there. David drove his car behind me and Luke in the ambulance with the nurse following him. We drove 2 1/2 hours to Tyler to a little nursing home (passing right through Terrell). We got there about 10:45. We stayed there just long enough to give Luke a breathing treatment and get his feed started, then left, putting Luke and all his accessories in the car the first time. It took us 25 minutes from the door of the nursing home to pulling out of the parking lot. We've since got it down to 10 minutes. We arrived at home with Luke at about 1:45 in the morning, greeted by my parents, some very confused kitty cats, and a big sign in the front yard that said "It's a Boy!" (so fun!). We put Luke down and got him situated, and finally tumbled into bed about 4:00 am. The next day was not much less chaotic. We met a new day nurse, made a zillion phone calls and received the rest of Luke's at home health equipment and supplies.
So, flash forward 4 1/2 weeks, we've adjusted pretty well to life here at home. We've pretty well worked out the nursing situation. We have our favorite night nurse four nights a week, a pretty good nurse two nights a week, and a different one every Friday night. We have a great day nurse five days a week, no nursing on Saturday (daytime) and a different one every Sunday. Since the second week, we haven't had 24 hour nursing, but it averages out to about 20 hours a day. We chose Saturdays to not have any nursing, since David's home all day. Saturdays are great having it just be our little family together. Our nurses are very nice and quite helpful (usually), but it's amazing how much more relaxed we can be when it's just us. Saturdays are the best. It's tough having a relative stranger (and at times a perfect stranger) in your house almost all the time. We haven't seen a lot of the judging or "policing" from our nurses (though I have felt some), but it still puts you on edge to have someone looking over your shoulder all of the time. We can't get rid of it though. Taking care of Luke is a full time job, and I would never leave his bedroom if we didn't have a nurse around.
So how's Luke doing? He's doing great. We have at least one doctor's appointment every week (so far since we've come home). Luke is doing a great job growing and developing his lungs and airways. Because he is exceeding the docs' and nutritionist's expectation of growth since he's been home (exceeding the goal by an average of 1 gram per day), that means his airways are getting stronger and he's almost ready to graduate off of the ventilator. They can't just take him off cold turkey since he's used it all of his life, so we have to increase his trach collar trials (time off the vent) gradually. The pulmonologist decided that we will lengthen his trials by one hour each week meaning this week he is off of the vent for two hours twice a day (total of four hours a day), and next week he'll be off for three hours twice a day (total of six hours), etc. This is GREAT news for us, because by next month he should just need the ventilator at night, making him a WHOLE lot more mobile. At this rate, he'll be off the vent soon after Christmas, and maybe lose the trach (called decanulation) by spring or summer (just in time for Tia Hannah's wedding). That's all, of course, hope and conjecture. We'll see what really happens.
Also because he has done such a great job of growing and getting stronger, it may be that he is beginning to outgrow his shunt that Dr. Mendeloff placed in his June heart surgery. Infants are normally ready for the next surgery in this series (they outgrow the shut and need a different means of getting blood to the lungs) between 4-8 months. I think we were thinking we might be able to get away with putting off surgery until March (after flu and RSV season) because he was having such a hard time growing for awhile. Luke will be 6 months on Nov. 11, which officially puts us between 4 and 8 months. He should be outgrowing his shunt sometime soon, and starting yesterday we've begun seeing signs that this might be happening. Dr. Kao told us to look for his O2 saturations to be chronically in the 60%s, and the last two days Luke's spent most of his time in the 60s and next to no time above 75%. We're going to call Kao tomorrow to see what she thinks and maybe get an echo done on Luke's heart. Since we can't manage Luke's saturations by any pulmonary means (like breathing treatments, raising his oxygen, etc), I suspect that the saturation levels have to do with his heart and not his lungs. So he either needs blood to replace what they took on Wednesday and Thursday for tests (which is also a problem because it means he hasn't started manufacturing his own blood) or he's outgrowing his shunt. We're not doctors, and we don't know for sure, there could be something else going on that we don't know about, but it sounds reasonable to me.
David and I have been doing pretty well. Life doesn't stop because you bring a baby home. My practice has grown fast. I've been seeing 7-10 clients a week, which was my goal before Luke was born. David's been busy working, so it's been a challenge to balance our time at work, time with Luke, and time with each other (welcome to parenthood right?). It's been a big struggle for me because Luke is quite immobile. Even moving him into the living room is a major production. I don't get out of the house hardly at all unless it's to see clients or take Luke to the doctor. I've missed being connected to the outside world and doing normal things like going to the grocery store, seeing friends, and going to church. When I do leave the house, or even leave his bedside, I feel guilty for abandoning him, even though my therapist brain tells me that's silly. I've decided to go see a counselor this week to see if she can give me some suggestions for coping with all of this. It's a little embarrassing for a therapist to go see a therapist, but there it is. I can admit when I need some help.
So mainly, thank you all for your prayers. They are responsible for getting Luke home where we can enjoy all the new smiles, growth spurts, and milestones in familiar surroundings. But we also still need your prayers. We need to be covered in prayer so that our family and our marriage stays strong. We need prayers so we can cope with adjusting to home life and to gear up for surgery number 2. We need you to pray that God's timing will be perfect on his next surgery, and that we don't have the troubles that we had during his first one. Thanks for your continued prayers and support. We love and appreciate you all.

Blessings,
Rachael, David, & Luke

Wednesday

wishes someone in this world would be competent enough to get a blood draw from Luke instead of sticking him 3 times with zero results. A - G - O - N - Y

Monday

Luke just took two whole swallows of milk from a bottle! Quite a bit of crying, coughing and sputtering and looks of "mom, what in the world do you want me to do with this thing in my mouth???", but PROGRESS.

Sunday

is discovering how truly draining it can be to be a mother. What have I accomplished today? Got a child dressed, maintained his oxygen level, played with him, and bought diapers and wipes. And I'm tired.

Thursday

Home. I can hardly believe it. Home.

"When the men were returning home after David had killed the Philistine, the women came out from all the towns of Israel to meet King Saul with singing and dancing, with joyful songs and with tambourines and lutes." 1 Samuel 18:6

This is Lord's Doing. It is Marvelous in Our Eyes.

Today.
God's letting us take our baby boy home today.
After four and a half months. After 4 weeks in NICU, 15 weeks in PICU, and 5 weeks at OCH. After one CAT scan, two heart caths, one open heart surgery, cardiac arrest for 26 minutes, 2 days on ECMO, a head bleed, 3 seizures, 6 weeks on dialysis, weeks and weeks of being hungry on IV nutrition, an illius, 3 infections, dozens of IV sticks, hundreds of blood gas sticks, 5 weeks of a heart rate over 200 beats per minute, multiple shocks with the crash cart, a trach surgery, a stomach surgery, multiple blood transfusions, and a brain MRI, Luke gets to go home. He gets to ride in a car for the first time, sleep in his own bed, and meet his kitty cats.
This boy that wasn't supposed to make it until 26 weeks gestation. This boy that was supposed to be born months early and seriously underweight. This boy who probably would have to live breathing off of only one lung. This boy who stumped the doctors with his arrhythmia and the physical size of his heart. This boy that showed us that the foolishness of man is the wisdom of God. This boy who thousands of you have prayed for. This boy who God has healed with undeniable miracles over and over. This boy's going home with his mama and daddy.
For real.
For keeps.
Today.
David and I are more ready for this than we've been ready for anything in our lives. Our funding for the Medically Dependent Child Program (MDCP Medicaid) has gone through, but we have one more hoop to jump through. We have to do an "overnight" stay in a nursing home. The closest nursing home that will take vented and trached kids for this purpose is in Tyler. The overnight stay doesn't have to be 24 hours, just from one day to the next - over a midnight. Our plan is to leave Baylor at 8:30 pm and travel via ambulance to the nursing home in Tyler. I'll be with Luke, David will follow with our car, and our night nurse will follow in her car. We'll stay at the nursing home long enough to feed Luke and give him a breathing treatment, then we'll leave there around 12:30 am. David, Luke, and I will ride in our car home to Terrell, with the nurse following us. We expect to arrive home about 2:00am, where my parents will be waiting for us with a clean house and a stocked pantry. We'll get Luke settled, and then try and get a few hours of sleep before the chaos of tomorrow when we will have our disposable health care supplies and some of our permanent equipment delivered and we have to figure out where to put it all.
We almost had a crisis yesterday. Our care coordinator came up and told me that at this late point in the game, our insurance, who has to pay for the 30 day gap in home health care services before MDCP picks it up, decided that they didn't want to contract with the nursing company we chose (we chose them 5 weeks ago, and they're just now saying this). So they wanted us to go with a company they chose, and keep Luke in the hospital for a few more days while they lined up our nursing care. I said absolutely not. Our care coordinator did some magic on the phone, talked to somebody's boss's boss, and got it worked out. So we get to keep our fantastic nursing company, and we still get to go home tonight. It was just really scary and frustrating for a few hours yesterday. Satan trying to spoil things.
I also want to tell you about some more happy news. For the last 10 days or so, the pulminologist has had Luke do something called trach collar trials. During these trials we take Luke off the ventilator for a period of time (a little scary in itself) and allow him to begin to learn to breathe without it. Instead, attached to his trach is a collar which delivers oxygen and warm moist air through his trach to his airway. Luke has been doing fantastic with these trials. They started him at 15 minutes. He is now up to 1 hour long trials twice a day. Luke's oxygen saturation needs to stay between 65 and 90%, with the target range between 75 and 85%. On the ventilator, Luke has pretty well been staying between 67 and 73%. During the collar trials he's been consistently satting in the 75-90% range. This is splendid news because it means that Luke's airways are getting much stronger and he won't be on the ventilator for very much longer. The nurse practitioner said that they want to wean him off slowly because its respiratory disease season, and he's still a little small for his age (Although he weighed in at 11 lbs. 13. oz yesterday - that's almost a 3 lb. gain since moving to Baylor 5 weeks ago!). We are getting the equipment in to continue these trials at home.
Last night I gave him his bath during one of these trials, which was awesome because he wasn't hooked up to the vent, and I didn't have to deal with hoses being attached to his throat (we used a mini humidifier called an HME instead of the trach collar for the bath). And I got to hold him over my shoulder chest to chest, which I've only done once before. Blissful for me. Luke hated it. :) Maybe we'll do some more of that soon, and he'll get used to it.
Last note I told you that I hoped my next note would be an announcement that we're taking Luke home. It is!!! Thank you all for your continued prayers. Please pray that our discharge, nursing home stay, and travel home all go safely and smoothly. Also, we need your prayers that our insurance approves the monthly injection Luke needs to protect him from RSV - we want to keep Luke out of the hospital until his next surgery planned in March. We need to keep him well, he needs these injections, and they cost $2,000 a pop without insurance. UniCare NEEDS to approve us. Thanks for your prayers. We love you.

This is the day the Lord has made. Let us rejoice and be glad in it.

Rachael, David, and Luke

Luke's 4th Month

photos courtesy of Diana

Tuesday

This is the day that the LORD has made. Let us rejoice and be glad in it. Psalms 118:24

Monday

Just so you know, we'll be leaving Baylor in the dust in just a little more than 24 hours. Just so you know.

Growin' Boy

photos courtesy of proud aunt Rebekah!

Friday

is getting the house ready for Luke to come home. Unless something changes he'll sleep in his own bed on Wednesday :)

Thursday

had five sessions today, picked up her car with a now very -unbroken windshield, a trip to the Terrell Zoo (aka Walmart) and is now resting before her last 24-hour room-in with Luke which starts tomorrow at 10 am. And is also sad because I can'...t seem to get my computer to play the last two episodes of LOST that we missed when Luke was born. Oh well.

Wednesday

All of Luke's at home medical equipment arrived today. It felt like Christmas...even better since this is the stuff that's going to allow us to take him home. Speaking of home... we only have 7 days!

Monday

We have a TENTATIVE discharge date: Drum roll please.....Tuesday, Sept 29. That's 8 DAYS in case you were wondering!!!!

(well technically it's 7 days now since I am posting this a day late-sorry Rachael!)

Sunday

Is having a lock-in with Luke tonight, but instead of popcorn, cards, and scavenger hunts, our list of planned activities include breathing treatments, meds, and Luke's all-time favorite: a bath!

Thursday

Just got Luke approved for the Medically Dependent Child Program (MDCP)! We have a few more tasks, but we're measuring our time left at Baylor in a few weeks, maybe even days! Praising God with tears for his faithfulness in paving the way for us.

Life at Our Children's House at Baylor

Well, we've now been at OCH for 3 and a half weeks. I waited until today to post a new note because we had our Family Care Conference yesterday, and I thought we might get a discharge date. I was wrong.
Quite a bit has happened in the last 2 weeks. First, an update on Luke's health. Early last week David and I started worrying because Luke was requiring more and more oxygen to keep his oxygen saturation ("sats" for short) at an acceptable level. He would alarm multiple times in the night and throughout the day, telling us he needed more oxygen. The pulminologist, Dr. Gelfand decided that his lungs or airways were not causing the problem, and was concerned that Luke might be outgrowing his shunt. (The BT shunt was placed during Luke's heart surgery in June. It is expected that Luke will outgrow the shunt, but we are hoping to hold out until March when Luke will get his next surgery.) I was worried that we would have to do Luke's second heart surgery earlier than expected, and before we even get to take him home for the first time. Dr. Gelfand decided that he wanted an echocardiogram ("echo" for short) done on Luke as soon as possible, but it was the middle of the night, and there are no cardiologists at Baylor to read it at 1:00am. So he called Dr. Chemelli, one of the cardiac intensivists at Medical City who worked closely with us and Luke, to see if they could do an echo there. Dr. Chemelli thought that Luke's oxygen problem could be solved by giving him a blood transfusion. Only 4 air molecules can attach to a red blood cell, so no matter how much oxygen you give Luke, if he's low on blood, he has no way to transport the oxygen to the rest of his body. Luke is just now approaching the age where he can manufacture his own blood (a process probably delayed by his earlier blood transfusions), and they hadn't replaced any of the blood they take when they do blood tests. So we gave Luke a blood transfusion the next morning and viola! his sats went up. Praise God for intelligent and intuitive doctors. We got an echo, just in case, and the echo showed that Luke's heart is working well, and he's not outgrowing his shunt yet.
Second, Luke got a brain MRI on Friday. The neurologist here at Baylor ordered the test because she knew that Luke had a head bleed and seizure activity after being on the heart lung machine after his surgery. Luke does have some brain damage from that trauma that showed up on the MRI, but the doctor explained that he is not showing any outward signs of damage. He said that babies typically manifest signs of this type of damage between 4-6 months. Since Luke is just now 4 months old, we will watch his development closely to make sure he doesn't have any problems, and they will follow up later. David and I feel a little scared because the type of brain damage Luke has, if substantial, can be linked to Cerebral Palsy. Folks, we can't take another hit. We can't do Cerebral Palsy. It looks like Luke's brain is fine, but please pray that he can develop normally in the areas of his motor skills and intelligence.
So the big question, when are we going home? 3 requirements: 1) Luke has to grow an average of 0.7 to 1 oz per day. He now weighs a whopping 10 lbs. 15 oz! He is meeting this requirement. 2) David and I have to complete Baylor's entire training program. We've worked hard, and have completed all of our classes. The only requirement we have left for this portion is our "rooming in". David has to complete one, and I have to complete two 24-hour periods where we stay with Luke and care for him around the clock: give him his breathing treatments, medications, feeds, trach care, and regular baby stuff like diaper changes and baths. David does his rooming in tomorrow, and my first one is scheduled for Sunday. Pray that we do everything well enough to be "checked" off. I can't do my second rooming in until we get our home medical equipment delivered, see #3. 3) We've made some headway on convincing UniCare that they need to pay for the 30 day gap in Luke's home health care that MDCP (medicaid) won't pay for. But UniCare wants to be certain that we've secured MDCP, and that they will pick up the cost after the initial 30 day gap. We've turned in our application and had our interview for MDCP, and we've been told by our social worker that we definitely will qualify and be accepted to the program, we just don't know how long it will take to get the official approval. Until we do, we're stuck here. Could be days. Could be weeks. Lord, please help us, it might even could take months. Folks, Luke's Mama cannot do this for months. Sometimes, I don't even think I can be here another hour. But Christ sustains me. He is my portion and rock. We can't get out of here until he works it out. Please pray that he works it out quickly. I'm literally at the end of my rope.
Baylor's not been all bad though. I realized today that since I'm staying up here with Luke at the hospital, he is my focus nearly all the time. Luke doesn't have to compete with laundry, dishes, vacuuming, or cooking for my time. Today I spent a solid hour playing with him, singing, and reading to him. I'd probably do those things with him if we were home, but would I really devote such undivided time and energy to him? It was such a sweet time today to see him smile and enjoy my attention. Sometimes God gives you a refreshing rain cloud in the middle of a drought (for those of you not from New Mexico - switch that: God gives us a patch of blue sky during the rain).
Keep praying for us everyone. We've come SO FAR. But we're not home yet. It's easy for us to get angry and to start despairing because so many are holding us back from taking our precious son home. We need your prayers. For those of you who have visited us, we really appreciate it. Baylor is a lonely place. You raise our spirits. Thanks for your prayers. Maybe in the next note, I'll get to announce that we're going home. Please God.

Blessings,
Rachael, David, and Luke

Starting Early

Friday

Waiting for David and Luke to get back from Medical City where Luke had a brain MRI this morning. They wanted to check him out finally after his head bleed and seizures that he had on the heart lung machine right after his surgery. No results yet. Happy 4 month birthday baby boy!

Luke and Gigi

Wednesday

Had a wild ride with Luke today. It turned out that he needed more blood. So they gave him a blood transfusion this morning, and now his oxygen saturations are holding in a completely acceptable range without too much oxygen. We got an echocardiogram today just in case, we're still waiting on Dr. Kao's interpretation of the results.

Tuesday

sick of being lonely in this place

Monday

***Update***

Luke's oxygen saturation is better. He's still requiring quite a bit of oxygen, and they've started him on antibiotics. He's still quite a bit more agitated and fussy than normal. He's doing a little better just being left alone with his plug and and his rain forest toy.

Luke's having a tough time keeping his oxygen saturation at an adequate level. He's requiring quite a bit of oxygen. They're doing cultures to rule out any bacterial or viral infections. Bottom line, we need to get out of the hospital and get him home so he's not exposed to any more infections. Lord, get us home!

Tuesday

Just got approved for health insurance once my COBRA expires this month. What a praise!!!

*****
Just had to post on what a great day Luke is having. The last four days in the morning his oxygen saturation (sats) haven't been good. Today his sats are awesome! David and I learned all about how to give his respiratory treatments, and we're feeling confident with that. Luke and I played, sang, and I held him for an hour. Now he's resting so good. Praise God for easy days!

Baylor: Our New Home Away from Home...Like It or Not

Well, here we are at Our Children's House at Baylor (still in Dallas). We transferred on Monday, and it was a very difficult day for our family. David had bronchitis, and so couldn't be around Luke and risk him getting sick. Rather than move him by myself, Patty Wallace, a friend from church came and helped me move all of Luke's stuff (you accumulate A LOT of stuff during a 15 week stay!). Patty was indispensable to me Monday. She preceded Luke and me to Baylor. I stayed with Luke the entire time and rode along in the ambulance with him. Luke did fantastic on the trip over. As long as he had his pacifier in his mouth, he stayed calm and took in the surroundings. It was his first time to ever be outside, and I'm not sure he thought too much about the bright sun and the TX heat. When we got up to his new room, he was doing fantastic. He didn't even require any extra oxygen above room air.
The differences between Baylor and Medical City Congenital Heart Surgery Unit are countless. First, Luke shares a room with another baby. We share a bathroom with another two-patient room. We have a LOT less privacy than we did on CHSU. Second, in ICU, Luke either had a nurse to himself or he shared a nurse with one other patient. Here at Baylor, there's a nurse for every four patients. We maybe see our nurse once every hour or two. After getting so much attention and having help only ten feet away at all times, moving to Baylor is a huge adjustment. Third, the nurses seem to do quite a bit less here than at Medical City. They give meds and start feeds, but little else, as far as I can tell. The RTs (Respiratory Therapists) do everything that has to to do with Luke's trach or ventilator. The techs change diapers, give baths, change bedding, etc. It's been an adjustment to figure out who's job it is do something when we used to just get our nurse for everything. Having so much less attention means that I don't feel comfortable leaving Luke for more than a minute or two, even if I let the staff know that I'm stepping away. It's been an adjustment to spend the night by Luke's bedside. One of us is with him around the clock. I was with him Monday, Wednesday, and Thursday night, David stayed with him Tuesday, and my parents came and stayed with him Friday and Saturday night to give David and I some time together.
I cried the first night because everything was so different. Our nurse on Luke's first day here was a little abrasive, and first impressions take a lot to overcome. Gradually over this week though, I have come to realize that my attitude had a lot to do with how miserable I felt. I started being appreciative of the nurses, techs, and RTs, and telling them so. I told myself to smile -- It's not anyone's fault at Baylor that we were told we wouldn't have to come here and then had to anyway. It's not their fault we were expecting to have taken Luke home over two weeks ago, but we're looking at another several weeks in the hospital instead.
Some good things have come from being at Baylor, just in this week. Like I said, we have been used to a lot more attention, but we now do so much more for Luke. We used to have to get permission from the nurses to hold him, change him, or suction out his trach. Now we just do those things and holler if we need help. I felt a tremendous sense of accomplishment when I bathed Luke and changed his entire bed by myself the second night. I love being able to suction him when he needs it without having to wait for supervision. I love that the tech came in our room in the middle of the night to ask if she could change his diaper, and I got to tell her no thank you because he's sleeping right now. We feel empowered, and much closer to our son. Luke is spending much more time awake, and we enjoy playing with him so much. Luke is getting physical, speech, or occupational therapy every day. He's learning to sit up in a car (like) seat, rest on his tummy, and he's even getting some head control. I'm overjoyed that although he was having seizures three months ago, that he's awake, alert, and tracking age-appropriately. He still sleeps more than I think is normal, but he is a heart baby--they tend to need more rest. Another fun thing is that I've started putting Luke in clothes now. Before you would see Luke in just a diaper covered with a blanket or swaddled. That's because he used to have so many tubes and wires attached to him, clothes were really impractical. Now he is only attached to his ventilator, his feeding tube, and one sensor that tracks his oxygen saturation and heart rate. He looks absolutely darling in clothes. David and I are happy that we're starting to experience the joys (and challenges) of semi-normal parenthood.
So now the question I know you all are asking: How long will we be here? That's really ambiguous at this point. We are required to complete 6 trach changes on Luke and room in with him (doing everything for him) for 3 - 24 hour periods (I take two of them and Dave takes one). We've completed 2 changes already, and have the next 3 scheduled to take place this week. We have all of our other training classes scheduled for this week as well, except for our CPR (yes, we already took CPR at Medical City, but we have to complete it again at Baylor. Yes, that's frustrating, but we're just going to do it). So, we should be able to complete all of our training by the middle of next week, then we have to do our rooming in. I wish that was all of it.
We are in a mess with our insurance. Right now Luke is triply insured. However, David's health insurance does not cover home medical care--not home nursing or home medical equipment. Luke needs both. My insurance is expiring Sept 28, which is right about the time we're hoping to go home. Luke also has medicaid due to his heart condition, but it is the type that is re-evaluated once we leave the hospital and then becomes based upon our income. We won't qualify because David makes too much money. Luke's doctor will not release us until we have found coverage for Luke's home health care. So where does that leave us? There are programs called the Medically Dependent Child Program (MDCP) and Money Follows the Person (MFP) program, which are basically back doors to Medicaid. We are working on getting benefits through these programs, but as with anything in the government, it takes more time than we want it to. One thing about these programs is even if and when we get approved for them, they will not start covering Luke's home medical expenses until 30 days after Luke goes home. So who pays for those 30 days? Luke's Baylor team and the home nursing and home medical equipment companies have to go to battle to convince David's insurance company that it would be cheaper for them to pay for Luke's home medical expenses than it would be for them to continue to pay for Luke to stay in the hospital. This is a long and extremely frustrating process. We finished the MDCP application Friday, but I have no idea if it's in the hands of anyone who can do something about it yet. Our home nursing company has already started battling with UniCare, but we'll know a little better what's going on with that Monday.
Tuesday we have our first Family Care Conference. We will have a lot better idea of a discharge date when we have Luke's entire team of doctors, coordinators, educators, and social workers there to ask questions and coordinate a game plan.
We would be very grateful if you would pray that God goes before us through this mess of insurance companies and government programs. We need help navigating through this, and we need God's help making this process go miraculously fast. We also need your prayers that Luke avoids getting any more infections or getting any new problems as long as we are forced to stay in the hospital. Luke is doing really well physically, we just need to keep him that way.
Thanks for all of your prayers. We love you,
Rachael, David, and Luke

Thursday

It's amazing what an attitude change can do to change your situation. I thank God for kind people, who, contrary to popular belief, are NOT JUST at Medical City. I'm confident that although this setback is discouraging, we will get through this and take our baby boy home.

Tuesday

Never thought she wish she was BACK at Medical City. We sure got spoiled in PICU, and we dearly miss all of our friends there! Baylor's way different. Not sure I like it here.

Thursday

just held my baby!

There's a Light at the End of this Tunnel

It's been over two weeks since Luke's trach surgery. We praise God because Luke is doing fantastically. His trach site (stoma) is healing. He's finished fighting off the last infection. David and I are gaining solid confidence in our skill to care for him and his special needs once we get him home. It is such a relief to not have to help Luke fight for his life. It's nice to come ot the hospital and hang out with him, play with him, and care for him without having sever anxiety for what the next few hours might hold.

Our frustration over the weekend is specifically due to the hospital's plans for discharging Luke. just before Luke got his trach surgery, it was communicated to us that if Luke did well and had no complications with his surgery, and if David and I could learn all of the necessary skills and could demonstrate our competence, then the intensivists (doctors) could decide not to send us to Baylor. Our understanding was that id we had to go to Baylor it would be because the docs weren't comfortable with our skill level, and our time there would be much abbreviated from the usual learning program because we had already learned the skills.

At the beginning of last week, Dr. Meyer decided that it might be possible for Luke to go home with only his trach and without his ventilator. As a result, they delayed ordering our vent and trach supplies to see if we could wean him off the ventilator. We gladly agreed to staying another week or so in the hospital to see if we could go home without a vent. As the week went on, it became evident that Luke was not making progress on the weaning process. We resigned ourselves to following the original plan of taking Luke home from Medical City (MC) as soon as he was adjusted to his home vent. Then we got the bad news: We are definately going to have to go to Baylor because the Respiratory Therapists here at MC can't teach us all we need to know about Luke's vent. The bad news kept coming: since we were entering Baylor, we would have to go through their entire educatio program for not just the vent, but the trach as well. So it effectively doubled the amount of hoops we have to jump through to get Luke home. Information came in pieces and was inconsistent. We would only need to stay a few days while David and I took turns staying with him for 24 hour periods and demonstrated we could care for him alone if we had to...we would have to stay the entire 6 weeks to go through the program as normal participants...we would have to complete 6 trach changes, but we might be able to do them more frequently than once per week...It was a yo yo. I believe David and I have been quite flexible throughout Luke's 14 week hospital stay (so far), but we've fairly reached the end of our flexability and patience. We could not understand why all of the stakk involved in making this decision could not get together and come up with a solid plan for transferring to Baylor. It was extremely frustrating.

Yesterday afternoon we had a Family Care Conference. We had the attending intensivist, the nurse practitioner, the nurse supervisor, Dr. Kao, and the coordinator from Baylor present. I said very little during the meeting (David's much better at putting forward a solid argument; I was too emotional to say anything intelligable). David stated our frustrations. We were met with some defensiveness, but we got to say what we needed to. Most helpful was our discussion with Rocky from Baylor about what we could expect at Baylor. She told us that there would be no fudging on the 6 trach changes, and the Respiratory Thereapist there is not willing to change a trach more than twice in a week. So we're expecting a three week stay at Baylore. We might could get our pulmonologist to pull some strings once we get there, but we have yet to create a relationship with him, so we'll see.

Baylor's going to be very different. Luke will have to share a room, and visiting hours end at 8 unless you're spending the night. We'll have to change the routine we've been establishing for 14 weeks. It also sounds like we will be required to have 24 hour at home nursing care when we finally get home for at least a month-maybe as long as Luke's on a vent. I was expecting we would need at home nursing, maybe even 24 hours for the first couple of days to make sure that we were confident with everything at home and to get any questions answered that might come up. But I feel really nervous and invaded upon to have a stranger in my house around the clock every day. I'm not a super private person, but I definatelyneed more privacy than that. David and I have some investigating on this point that we need to do, but we might have to accidentally dismiss our nurse after awhile. We haven't figured out how it will work when we want to take Luke to our friends' houses or to church--Will the nurse go with us? Or will we be disallowed to take him out of the house? If that's the case, this really is a prison sentence, and now we have a jailer. I know I shouldn't see it like that. I need to be glad for the medical care and support that we will recieve, but I have lots of anxiety about having someone watch every single move I make to care for my son. I'm truly afraid of being judged by this person every time I make a mistake. We could really use some prayers to help us get adjusted to this new way of life up ahead.

We just got word that Luke won't be going anywhere this week. There are no beds at Baylor right now, so it will at least Monday before we get transferred over there. Please pray that we don't encounter anymore setbacks. Please pray that Luke stays at his current level of health and gets no more infections before we can get trransferred.

One last point. I got a healthy dose of perspective and attitude adjustment today. While David and I were indignant, feeling abused and neglected on Monday, two kids died on our unit, one of them because of heart issues. I feel ashamed that I've been complaining about a delay in taking Luke home (significant as it is) , while there are two families this week who are going home without their beloved babies. It makes me weep to think of how close we really were to losing Luke, and renew my thankfulness that Luke is still alive and growing stronger every day. God just shut my mouth. Who am I to allow myself to feel entitled to anything when life itself is never promised to us? Again I thank you all for the prayers you send up for Luke's life and health. Pleas pray for the families that lost children this week. I don't know their names.

So, there is light at the end of this tunnel. We can see it, and it grows closer all the time. By our estimates, we should be taking Luke home in 3-4 weeks! We appreciate your continued prayers as we finish up the first leg of this journey.

We pray that you are blessed as much as we have been blessed.

Rachael & David

Tuesday

Just changed Luke's trach for the first time. I was more scared than Luke. Luke did great. It went great. No problems whatsoever.

Info

Will cry and scream and yell if we have to spend 6 weeks at Baylor...

Will write a longer post to let everyone know what's going on just as soon as we know ourselves. :)

Monday

Monday

Doc changed the trach for us the first time; we'll do it next week. The change went very smoothly. Luke's done beautifully all day. He's spent quite a lot of time awake today and was happy about it. Luke finally remembered today what he's supposed to do with his pacifier, (progress!), AND I got to hold him for about an hour and a half! It felt soooo good.

Sweet Boy

Trach Bootcamp

I'm not going to lie and say I'm not disappointed. David and I (and I'm sure many of you) prayed and prayed that God would allow us to take Luke home without him needing a trach or a ventilator. Luke's been through so much already - we've been through so much already - can't we just go home and get on with life as normal until we re-enter the hospital when Luke is 9 months for his second surgery? Surely God has done much more miraculous works in Luke's short life than strengthening his airways. And wouldn't God's name be praised much more readily by the doctors if they were expecting Luke to need a trach and then miraculously didn't have to? Nonetheless, I prayed that God's purposes would be fulfilled in whatever happened with Luke's airways.
We waited for a week and a half. Instead of seeing what we hoped, Luke's airways getting stronger and a decreased need for a ventilator, something very different began to happen. David and I gradually became accustomed to the idea of caring for our son with a trach and a ventilator and a G-tube. We started worrying less about the trach and everything involved with it and anticipating with excitement the day that Luke gets to come home--whatever equipment is attached to him. I fought it. I told God that I didn't WANT to be okay with it, I wanted him to FIX it. I told him I'm too tired to do this too.
The doctors continued to tell us they were fully expecting that he would need a trach. They continued to tell us that the condition of his airways is not something that can be fixed in a few weeks with rest and good nutrition. I held faith. I always reminded myself that God is in charge, not the doctors, and God can fix his airways with rest and good nutrition if he wants to. Dr. Kao (our cardiologist) was the one who suggested that we wait two weeks and see if he could be successfully extibated and function without breathing support. Eventually the other doctors convinced her that we needn't wait that long, that nothing will significantly change during that time, so they planned to take him down to the OR Monday, Aug. 3. I knew that if God was going to miraculously fix his airways, that He could do it by Monday, he didn't need an extra 3 days.
Then Saturday rolled around. David and I were on the way to the hospital that morning when we got a call from the charge nurse. Luke had gotten a hold of his breathing tube and dislodged it. Thankfully, Dr. Mendeloff (our heart surgeon) and Dr. Tia (the cardiac intensivist on the floor that day) were right there. They made the decision that since the breathing tube was out, that they'd give Luke his extibation trial. He failed. He lasted a few minutes without the ventilator, but was simply working too hard. No two way about it, he can't breathe on his own yet. They decided that it would be too much stress on Luke's system to give him another extibation trial on Monday.
Monday afternoon they took him down to the OR. This being our 6th trip to the OR, it was much easier to kiss him goodbye. I think Luke is even getting used to going on field trips. Dr. Hermann (pediatric surgeon - doc who put in Luke's dialysis catheter and later took it out) put in a G-tube for Luke to receive feedings and also did a Nissen procedure, which basically created a valve between his esophagus and his stomach so he can eat (eventually) and things can go in to his stomach, but it greatly reduces the risk of reflux (spitting up) and aspirating that into his lungs. While Luke was under anesthesia, Dr. Hermann was also able to complete Luke's circumcision. Then Dr. Chung (ENT surgeon - stands for Ear, Nose, & Throat) put in Luke's trach. Everything went well with no complications. We are thankful that everything went so smoothly.
In the past when families have a trach put in at Medical City, after the child recovers from the surgery, the child will move to Our Children's House at Baylor, a rehab facility, to allow the family time and instruction to learn how to care for a child with a trach. Medical City just rolled out a training program for parents. We are their guinea pigs. Hopefully, if all goes smoothly, this program will take the place of or greatly reduce the amount of time we have to spend at Baylor. They haven't given us a firm time frame on when we will be able to take Luke home. We're looking at hopefully getting our home medical equipment next Wednesday or Friday. Then maybe a week or a little more getting Luke adjusted to his new ventilator. Then it shouldn't be too much longer before we're headed home! David and I are spending most evenings preparing our home for Luke's arrival: finishing touches on his room decorations, getting air filters to clean the air in our home, Uncle Andy is even giving us his Roomba (robot vacuum!) to help out with the cat fur in between thorough vacuumings. Luke is gong to have a lot of equipment that he must be attached to or within arm's reach at all times, so we're even going to get a wagon to pull him around the house in so I can still get some things done around the house rather than being at his bedside 24/7. During the day we're learning all about how to take care of Luke's trach and g-tube sites: cleaning, changing equipment, assessing for problems, etc. We have fantastic nurses who are also our instructors. Dr. Mendeloff (our heart surgeon) even stopped by for a visit today and watched as I demonstrated what we learned in trach bootcamp today (talk about pressure!).
God didn't miraculously fix Luke's airways this time. Could he? Yes. Are we disappointed that God didn't act miraculously at this time and we have to take a bunch of equipment home? Yes. Does this mean that we didn't pray hard enough or have enough faith? No. David and I are confident that God sees the whole picture. He sees much more than we can, and we are convinced that his purposes will be realized as long as we surrender daily to him and act faithfully.
We are grateful for your continuing prayers for Luke's healing, as well as for strength and endurance for me and David. We feel pretty confident that we can do this, but we're digesting a lot of very critical information every day, and it's pretty draining. We love you all and appreciate your prayers and support.

Blessings,
Rachael & David

Tuesday

Trach bootcamp...

Monday

Luke's out of surgery. Everything went just fine. We're waiting to go back in and see him.

Sunday

is trying to look at the bright side of Luke getting a trach and a vent tomorrow. . . it's not a prison sentence...really. We're going to be glad he's coming home in a few weeks, whatever he's attached to... And I will praise God through this storm too...

A verse

As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts.

Isaiah 55:9

Wednesday

having a sleepover at the hospital with Luke!

Tuesday

Waiting to go back into Luke's room. They're taking his dialysis catheter out today. No more dialysis EVER!!!

We Need Your Prayers for Another Miracle

Luke doesn't give us a chance to catch our breath. It seems like as soon as we get a chance to catch our breath something else happens. We need your prayers for another miracle folks.
Last Thursday, the docs attempted to take Luke's breathing tube out to see if he could breathe on his own. He only made it a few minutes before they had to re-intaibate him. They told us not to worry, Luke just simply wasn't ready to go on his own yet, but we would try it again this week. The doctor on call this week was shadowing the doctor on call last week, and was present for Luke's attempted extibation. He had a hunch that something more was going on with Luke than a simple, "he's not ready." So yesterday he sent Luke down to the OR where they put him under anesthesia and took out the breathing tube. While he was still asleep and breathing on his own, they dropped a scope down his airway to take some pictures of what was happening down there. They discovered that Luke's left bronchus is "floppy" (the highly technical medical term they used). It closes when it doesn't have the positive pressure from his ventilator. The bronchial tubes are cartilage - like your ear or your nose. In very young babies, the cartilage of of the bronchial tubes has not hardened like it has in adults - making it more "floppy". So they re-intibated Luke and brought him back to the PICU.
We are basically faced with two options. 1) They could do a tracheostomy. They would cut a hole in Luke's throat and insert a permanent breathing tube in the hole. Since Luke needs the positive pressure support of a ventilator, they would hook that up to his trach and he would go home on a ventilator. It's extremely difficult for a child to learn to eat with a trach. Since Luke never has learned to eat in the first place, that makes it even more difficult. So, we are also looking at them putting in a gastrostomy tube (or G-tube). This would be a permanent catheter inserted into his stomach where he would receive breast milk for as long as he needs the ventilator/trach. It is difficult to estimate how long Luke will need the trach while his bronchial tubes grow and strengthen and harden. Likely he will need it until sometime between his second surgery (at 9 months) and third surgery (at three years). That's a big time window, and we're looking at several months to three years.
Option 2) is we could keep him in the hospital on hospital ventilation support until he can breathe on his own, which again would be several months to multiple years, there's just no way to tell. Needless to say this isn't really an option for us. We have to take him home.
Last night, I admit, I lost faith. I despaired. Maintaining a trach is a huge job. You have to clean it, suction it, and change it. Plus, Luke will constantly be attached to his ventilator. Though it's supposedly only the size of a laptop, we will have to haul it and all his back-up trach accessories everywhere we go. We would only be able to leave Luke with a caretaker who has undergone extensive training on how to care for his special needs (that's assuming I could ever let him out of my sight). Because Luke will still be on the ventilator, he still won't be able to make sound - no crying to alert mom and dad that something's wrong; no cooing and laughing when we play. Also, no swimming or submerging in water. I think the most heartbreaking for me is that it precludes nursing. I've gotten through countless tedious pumping sessions by thinking about the time when I would finally get to hold him to me and bond with him while he nursed. The death of yet another one of my hopes. We've buried and grieved for so many.
Last night I cried and cried. I doubted. I wondered how we will take care of such a special needs child. I worried about screwing up and that screw up being lethal to our child. I think that this is such a huge mental and emotional hurdle for me because we were ready for an extended stay in the hospital, but the expectation was that when we went home, we would leave this nightmare behind us as we prepared for round two at 9 months. Now it looks like this nightmare's gong to follow us home. Before last night I knew I was going to struggle to find the energy to do normal mommy things after staying so long at the hospital - how in the world am I going to find the extra energy to take care of a baby with a trach, a ventilator, and a G-tube without the everyday little gifts of joy that other mommies get like hearing her baby coo or cradling him at her breast? You think taking your first baby home for the first time under normal circumstances is daunting - lets add a trach and a ventilator...
It may be selfish, but I really don't want to do this. I'm DREADING doing this. I don't know if I CAN do this. I hope it's not too much to ask for a little bigger sense of normalcy, because I'm going to ask. I want Luke to have a more normal upbringing. I want him to experience pleasure in tasting his food. I want him to learn to walk without having tubes attached to his neck. Selfishly, I want to eventually be able to leave Luke with a sitter and go on a date with my husband again. I don't want to have to cry as Luke struggles and I have to hold him down to change out his trach tube. I want to get some sleep instead of lying wakeful because I'm afraid Luke will get into respiratory distress without me hearing that he's in trouble. No this is not a life or death thing, but it certainly is a quality of life issue - for both Luke and his parents.
Folks, when Luke was in the NICU, you prayed that Luke would be able to use his left lung. He started moving air through that lung a week later. You prayed that his heart rate would slow, and a few days later he went into the cath lab and came out with a brand new (and perfect!) heart rhythm. Please stand with me and ask God for another miracle. Nothing is too hard for him. A collapsing airway is not harder for him than a collapsed lung. We are going to wait two weeks and repeat the scope procedure to see if anything has changed. They are not expecting it to change and are fully expecting that they will do a tracheostomy on my son at that time. Wouldn't it be fantastic if God stumped them again?? If in two weeks they walk out of the OR and say, "We can't believe this, but his airway stays open!" My faith has been renewed. Dr. Kao made the call to wait two more weeks before doing the trach, and I believe it happened that way specifically so that we could stand and be amazed once again at God's work in Luke's life.
We ask that you pray once again. Please pray that Luke will not need a tracheostomy. If God decides that he does need it and we need to go that route, please pray that David and I will have the strength and the endurance to handle Luke's care. I admit. I'm tired. I've had it. I don't think I can take one more thing. I need your prayers for my son and for me. Thank you for your faithfulness in prayer. Thank God for his faithfulness and mercy in all things.
We pray that you are blessed as we are.
Rachael & David

Thursday

Luke just came back from the OR. His left bronchial is definitely collapsing without pressure support from the ventilator. We're a long way away from extabating. We don't have a plan of action yet, but it is likely that he will need a tracheostomy to go home.

Tuesday and Pictures!

Just got brave and trimmed her baby's nails for the first time. He slept through the whole thing, and no nicks! Success!

Luke with Daddy


Luke with Mommy


Luke and his proud aunt and uncle, Rachel and Blake

*thanks for letting me steal your pics Rachel!*

Monday

Luke's heart rate has been stable for a week now. They've moved up to feeding him milk instead of Pedialite. Luke's little tummy is keeping everything down very well so far. He's been on his dialysis vacation for four days now, and things are going well. We're hoping to try and extabate again Friday at the earliest. Luke probably has another infection, and they've started him on antibiotics.

Sunday

They started giving him 1 mL an hour of Pedialite. Pray that he can digest it everyone! We need that little panza to work!

Thursday

They tried extabating Luke today, but the doc said that he just isn't ready - he can't sustain the oxygen level he needs breathing on his own yet. So they re-intabated him to give him a chance to get stronger. We're disappointed, but still very glad that his heart continues to beat a normal rate and rhythm.

*sorry I posted this a day late*

Wednesday

Heart rate has been in the 120s (only raising to the 160s when he gets REALLY mad, then back down again) for 50 hours now. We are hearing rumors about extabation (taking him off the ventilator) tomorrow. What are we going to do with two good days in a row?? Just sing praises.

Tuesday

Praise God!
Heart rate still in the 120s
Waiting on a report of stomach issues
(summarized by Clarissa)

My soul glorifies the Lord
⁴⁷and my spirit rejoices in God my Savior,
⁴⁸for he has been mindful
of the humble state of his servant.
From now on all generations will call me blessed,
⁴⁹for the Mighty One has done great things for me—
holy is his name.
⁵⁰His mercy extends to those who fear him,
from generation to generation.
⁵¹He has performed mighty deeds with his arm;
he has scattered those who are proud in their inmost thoughts.
⁵²He has brought down rulers from their thrones
but has lifted up the humble.
⁵³He has filled the hungry with good things
but has sent the rich away empty.
⁵⁴He has helped his servant Israel,
remembering to be merciful
⁵⁵to Abraham and his descendants forever,
even as he said to our fathers.
Luke 1:46-55

Post Second Heart Cath

It's been an incredibly stressful and emotional day today. I apologize in advance for the length of this note -- there's a lot to be scared about, a lot to be thankful for, and a lot we need prayer for -- as well as my lack of eloquence as I pound out this message.
My last note explained the three options we had for attempting to lower Luke's heart rate. The Amioderone and Esmolol combo continues to be futile, though they continue to give him maximum doses of the Amione and high doses of Esmolol. This past weekend they attempted to feed Luke very small amounts of Pedialite to see if he could digest and absorb something. It did not go well. Instead of digesting the Pedialite, the liquid just sat in his intestines and his belly became distended again. So they have not attempted the Flecanide. However, our day doc over the weekend (Dr. Meyer) suggested that we try a medication called Dejoxin. When Luke was about a week old, his heart rate spiked into the 220s bpm. They gave him Dejoxin to help control this arrhythmia. That arrhythmia was of a different type than the one he's been in since his surgery, but we know that he is responsive to the drug Dejoxin. The Dej was started yesterday about 2:00. We were told it could take up to several days to know if it would affect his arrhythmia.
Last night we had one of the coolest experiences since the start of our stay here at Medical City. Dr. Meyer is a doctor we've gotten to know a little bit over the last several weeks. He is an ACU alumni, and we've connected over that. Last night before Dr. Meyer went home, he came into our room and in his "doctor voice" told us and the nurse that we were "going to pray for this baby." So Dr. Meyer, our nurse Kelly, and David and I all laid hands on Luke while Dr. Meyer prayed, even using medical terms, acknowledging that God knows how to return Luke's heart to a "normal sinus rhythm" and asking him to do so by whatever means necessary. I was overwhelmed with emotion to hear one of Luke's doctors call on the name of the Lord on his behalf.
This morning, Luke's case was again presented during the hospital's weekly cardiology conference. All the medical professionals that attended this morning (including Dr. Kao and Dr. Mendeloff) agreed that they should perform another heart catheterization. (For those of you just tuning in, that is a procedure in which a tiny catheter or catheters are inserted into an artery or vein in the groin and threaded up to his heart. The catheters are then used to explore and measure inside the heart, including rhythms and pressures.) I was informed of this decision about lunch time today, and they started getting Luke ready to take him down to the cath lab about 1:30. Not a lot of time for mamma to get mentally or emotionally prepared. David had a full and hectic day at work today, so he rushed up here as soon as he could.
The cath took about two hours. My parents have been here on a visit for the weekend, and they waited with us. Dr. Kort came out and told us that the cath went very well. They discovered that Luke's profusion (blood flow out to the body) is good. His pressures are good. They didn't find anything different than they expected as far as the heart rhythm. They did deduce that his profusion will work even better if they give him a higher concentration of oxygen through his ventilator. Also due to Dr. Kort poking the catheter around in his heart for a couple hours caused Luke's heart rate to go down to the 130s. He told us that he expected this rate to be only temporary.
Just a few minutes after Luke got back up to his room from being in the OR, David and I went into our "Family Conference." This was a meeting with pretty much everyone working with Luke: mom and dad, Dr. Mendeloff and his nurse practitioner, Dr. Kao, the cardiac intensivist (regular day doc, her name's Dr. Tia), nurse manager, and Luke's social worker. We all talked together about the plans they have for Luke. Basically for this meeting we got that everyone hopes Luke's heart rate will stay put (130s). If it doesn't, we'll go ahead and try the Flecanide, even though he hasn't been able to digest the Pedialite. If that doesn't work, we have no other option than to do the EP/Oblation study (see previous note for explanation). We talked about some other things, including that Luke is going to undergo a test to explore what's going on with his intestines probably tomorrow, then we ended the meeting. When we got back to Luke's room, Dr. Tia and Dr. Kao where hanging around Luke's bed, and Luke's heart rate was in the 110s. They had gotten and EKG, and discovered that this heart rate was another kind of arrhythmia. His atrium was beating at a different rate than his ventricle and only 1 in 2 beats were showing up on the monitor. His real heart rate was back above 200.
After a lot of discussion, Dr. Kao decided that they should shock him (crash cart...the whole 9 yards) to see if they could get him out of that rhythm. It took awhile to set the whole thing up so they could monitor him via EKG during the whole process. They sent us to sit just outside the door to watch through the window as they shocked my infant son. It wasn't quite so dramatic as a scene from ER, but I cried through the whole thing. David and I always feel 10 times better when Dr. Kao's in the room watching over Luke.
After several more minutes, Dr. Kao came out and told us that Luke's heart had settled into a normal sinus rhythm in the 110s. Top and bottom of his heart are beating at the same rate. It's a normal, regular, acceptable heart rate. David and I are praying that we just received our miracle. We didn't know what it would take, didn't really care, prayed for God to do whatever was necessary. Right now it looks like it took some poking around and one big shock. Dr. Kao told us to expect that Luke's heart rate will likely creep up to the 130s-140s (and hopefully stop creeping there) as Luke comes out of sedation and recovers from the cath. As I'm writing this, Luke's heart rate is in the 120s. His blood pressure and profusion measures to the top and bottom of his body are on the lower end of acceptable, trending upwards. A few minutes ago Luke's blood pressure dropped, so they took him off the Esmolol, and it returned to fairly normal. Dr. Stromberg (night doc) just came in and told us that the Amioderone has been doing what it's supposed to do, and if we continue him on the Amioderone, we should be able to maintain this rhythm. David and I are struggling not to get over excited. Our official position is "cautiously optimistic".
So, right now, as the tears flow, it looks like we got our miracle. God used the heart cath as the tool to lower his heart rate. Folks, it wasn't designed to do that. It wasn't supposed to lower his heart rate - we didn't even know to hope that it could do that. God continues to amazes, shock, and delight us with his answers. You as our family and friends continue to be faithful in prayer, and God continues to be faithful in his provision. Let it be said that GOD IS FAITHFUL. GOD IS AWESOME. GOD HEARS THE PRAYERS OF THE RIGHTEOUS. And GOD IS GOOD ALL THE TIME. I can say "all the time" because I've been through hell as well as the highs. It is my wish that all hearts belonging to the eyes that read this turn to YHWH, the God of Miracles. Even if this is a temporary reprieve from the outrageous rhythm we've been at for four weeks, God is still worthy of all honor and praise.
Thank you for your prayers. We ask that you pray fervently that Luke's heart rhythm would stay put in this beautiful rhythm and rate. We ask that you join us in praising God for his faithfulness and mercy.
Blessings and Love,
Rachael & David

Luke is Two Months Old!

photos courtesy of Diana Trichitti

Monday

Docs decided during cardiac conference this morning that Luke needs another heart cath to see if they can see anything to hint them towards a correction for his heart rate. They took him to the cath lab a little after 2:00 this afternoon. Waiting... and praying that a solution presents itself during this procedure.

Sunday

Started the Dejoxin at about 2:00 this afternoon. We don't really know how long we have to wait before we know if it is helping, up to a couple of days. Nothing glaringly wrong with Luke's intestines on preliminary x-rays, need to do a more in depth study. Pray that the meeting of the minds (all Luke's docs + nurse + us) at 4:00 tomorrow will come up with some good ideas for lowering his heart rate.

Saturday

Amioderone and Esmelol aren't working. Not keeping the Pedialite down, so we can't give him Flecanide. Day doc today came up with a new idea of giving him a medication called Dejoxin that Luke responded to when used for a different arrhythmia problem back in NICU. We'll try that tomorrow. We have high hopes for Dejoxin.

Call to Prayer

As always, we are so grateful for the prayers you continually send up to the Father for Luke, David, and myself. Several weeks ago, before Luke's first surgery, we asked you to pray specifically for a miracle to happen. At that time we knew that Luke had the tissue of two lungs, but only 2/3 of one lung was working. We didn't know if he had the capability of using both lungs. We asked you to pray. You delivered. And God answered. Only a week after we asked you to pray, we got a positive answer to those prayers. Luke's second lung started inflating. He started moving air through that second lung.
Today we're in a similar place. As most of you know, we've been struggling to bring Luke's heart rate down to a normal rhythm. His heart has beat around 200 beats per minute for about 3 weeks now, when it should be around the 140s. The doctors have tried different combinations of the drugs Amioderone and Esmolol since this problem first started. It still hasn't worked. The doctors are telling us that we may be approaching the time in which Luke's heart will start to give out because it has been beating so incredibly fast for so long. It could be tomorrow, it could be next weeks, it could be longer, but we're running out time to get a handle on the problem.
After debating for about two days, Luke's team of doctors have decided upon a three step plan: (1) We max out the doses of Amioderone and Esmolol. Amioderone has been maxed out for quite some time, we're now slowly increasing the dose of Esmolol. By tonight he should be maxed out. Massive doses of the Esmolol has in the past caused Luke's heart to drop beats and have an adverse effect on his blood pressure. We're praying that it won't this time, but if it does, they can back off the dose rather quickly and get him out of trouble. Since we've tried variations of this option for three weeks, we don't have high hopes for this one being very effective in bringing his heart rate down.
(2) If the maxed out combo of Amiode and Esmolol doesn't work, we move to step two. This is a drug called Flecanide (sp?). This drug can only be administered orally and can not be administered on an empty stomach, and so we face quite a substantial obstacle. Luke hasn't been able to digest breast milk for about two weeks. They started up his feeds at 1 mL per hour night before last, but he threw it all up again. Today, they are attempting to feed him 1 mL per hour of Pedialite, which is basically water with vitamins and electrolytes. The goal is not yet to give him nutrition through this method, it's only to put something in his digestive system so that he might absorb the Flecanide. If Luke can keep the pedialite down until tomorrow afternoon, they plan to start the Flecanide. This medication also places Luke at risk for a different kind of arrhythmia, so they will be doing an EKG every day to monitor that. We are praying earnestly that Luke can keep the Pedialite down. If he can't, we can't give him Flecanide, then we must go to plan C.
(3) Plan C is where it is on the totem pole because it's very risky. It is called an oblation study. They would take Luke down to the cath lab and again run a catheter through one of his blood vessels to his heart. They would then use the catheter to poke around his heart at different nodes to try and find the one node that is causing his heart to go into the super-fast rhythm. Once they found it, they would then cauterize it or freeze it and render it inoperable. The idea being that it would no longer be able to throw his heart into the rhythm, and we could manage it better. It was explained to us this procedure is quite risky when performed on adults. When performed on a baby as small as Luke, the risk increases exponentially.
That's it. If one of these options doesn't work, that's it. Game over.
So we're calling you to pray for yet another miracle. We asked you to pray, and Luke was born even though he wasn't supposed to make it to 26 weeks. We asked you to pray, and an ambiguous lump of lung tissue started moving air. We asked you to pray, and Luke survived a risky surgery, even after arresting in the elevator. We asked you to pray and Luke was able to get off the heart lung machine. So we're asking you to call out to God to slow Luke's heart rate down in some way. As his parents, we really don't want to get to the point where the oblation study is our only option. I believe God can and will intervene before that. Please pray, like you've never prayed before, that Luke will go into a healthy, steady, normal heart rate using whatever method God would like to use. That's the key to everything. Once we get that, his kidneys and bowls will heal, and we'll get him of the ventilator, and on the way to bringing him HOME. We're almost out of options guys, and I have to fight to keep myself from going frantic. But we know that God is in control. We know that God is merciful and loving and powerful. He has the power to heal Luke completely. I believe he wants to hear from us and from you that we want him to intervene in Luke's situation again. I believe he will answer.
I am reminded of a passage out of Daniel 3: " Now when you hear the sound of the horn, flute, zither, lyre, harp, pipes and all kinds of music, if you are ready to fall down and worship the image I made, very good. But if you do not worship it, you will be thrown immediately into a blazing furnace. Then what god will be able to rescue you from my hand?” Shadrach, Meshach and Abednego replied to the king, “O Nebuchadnezzar, we do not need to defend ourselves before you in this matter. If we are thrown into the blazing furnace, the God we serve is able to save us from it, and he will rescue us from your hand, O king. But even if he does not, we want you to know, O king, that we will not serve your gods or worship the image of gold you have set up.” (Dan. 3:15-18)
The God we serve is able to do immeasurably more than we ask or even hope. He can heal Luke and make him whole. But we want the world to know that even if he does not, even if we lose our precious son, God is still worthy of worship and praise and honor. We acknowledge his love and power over all other gods.
We desire to join in faithful prayer with you for Luke's healing. Thank you for your love, friendship, and earnest prayer.
Blessings,
Rachael & David