At 20 weeks gestation baby Luke was diagnosed with a heart defect and wasn't expected to live to term. Well, God is good and not only did Luke make it to term, he was born and has been alive for 6 weeks! He underwent his first heart surgery a few weeks ago and still has several more weeks/months in the NICU plus several more heart surgeries down the road. This family appreciates your prayers!
6/25/09 UPDATE: Luke got his chest drainage tube out this morning! We're so excited for this step towards recovery! The combination of medications the docs have put him on seem to be having an effect on his arrhythmia. We're a step closer to figuring out exactly how to treat it and keep it under control. Thanks for your prayers.
6/30/09 UPDATE: Luke has an infection which they're trying to fight with antibiotics. Having some complications with his abdomen being irritated because of the dialysis, but docs aren't too concerned about it. Just plugging along today, not making a lot of progress. Heart rate's in the high 180s low 190s. Thanks for your prayers.
7/10/09 UPDATE: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.
UPDATE 8/4/09\
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 tracheotomy. 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 gastronomy 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...
UPDATE 8/4/09\
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 tracheotomy. 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 gastronomy 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...
UPDATE 8-31-09
Luke has been transferred to Our Children's House at Baylor in Dallas.
His parents have posted specifics...this is just a small piece...they have a long stay ahead of them... 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.
UPDATE 9-29-09
PRAISE THE LORD!! Luke is scheduled to go home tomorrow. He still has a long road ahead of him, so please remember him in your prayers!!
prayingforbabyluke.blogspot.com
prayingforbabyluke.blogspot.com
Praying for continued improvements and wisdom for the physicians...
ReplyDelete