Thursday, October 22, 2009
Jack's first outfit
Rachel just sent me this picture. Lindsey (the boys' nurse) let Rachel put Jack's first outfit on him!
Jack's first water bath
Nothing but good news to report. Luke is tolerating his feedings (smallest amount possible - 0.5 ml/hour bypassing his stomach and going straight into his intestines). Since he is doing OK, they will probably not change any oxygen or nitric levels for a few days (oxygen is at 40% and nitric is at 15). Besides his morphine, he has not needed any extra sedation, so he is wiggling around more and starting to open his eyes and look around when we talk to him.
Jack's feedings are going into his stomach and he is on the highest setting for the feeding tube (I think 10 ml/hr). Both sets of grandparents have enjoyed holding him this week. His PICC line was taken out yesterday, so all he has now is the oxygen line around his face and his feeding tube (plus the three probes for heartrate, breathing rate and pulse). While I was at church for Real Life last night, Rachel gave Jack his first water bath - she said he seemed to like it.
Jack's feedings are going into his stomach and he is on the highest setting for the feeding tube (I think 10 ml/hr). Both sets of grandparents have enjoyed holding him this week. His PICC line was taken out yesterday, so all he has now is the oxygen line around his face and his feeding tube (plus the three probes for heartrate, breathing rate and pulse). While I was at church for Real Life last night, Rachel gave Jack his first water bath - she said he seemed to like it.
Tuesday, October 20, 2009
Pictures from Monday
Jack was wide awake and looking all around
He is ready to get rid of his feeding and oxygen tubes and tries to pull on them
Luke looks much better and was calm enough to let nurse Lindsey change his bed - now he has his monkeys just like his brother
He is ready to get rid of his feeding and oxygen tubes and tries to pull on them
Luke looks much better and was calm enough to let nurse Lindsey change his bed - now he has his monkeys just like his brother
Huge milestone for Luke!
Mom and Dad are at the hospital with the boys right now. Rachel called for an update and got some great news - Luke has a feeding tube!!! He is tolerating it so far and will start some very small feedings today. His oxygen level continues to be weaned and they are starting to wean his nitric as well. Luke had an echo-cardiogram this morning to check his heart and the pulmonary hypertension is looking better. He will get a chest x-ray this afternoon to make sure his lungs are looking OK after all of the changes and progress made these last few days.
Jack is still doing great. I stopped by to see the boys yesterday after work and I had never seen Jack so active and responsive. He was wide awake and yawning a lot. His dark eyes were wide open and looking around as he smiled between yawns. He kept touching his face and trying to pull at his feeding tube and oxygen line - he's ready to do things on his own and wants to get rid of them! I held his hand and he tried pulling my finger into his mouth - looks like he is liking the feedings and ready for more.
Jack is still doing great. I stopped by to see the boys yesterday after work and I had never seen Jack so active and responsive. He was wide awake and yawning a lot. His dark eyes were wide open and looking around as he smiled between yawns. He kept touching his face and trying to pull at his feeding tube and oxygen line - he's ready to do things on his own and wants to get rid of them! I held his hand and he tried pulling my finger into his mouth - looks like he is liking the feedings and ready for more.
Monday, October 19, 2009
Luke doing well - 4 days and counting...
Great news today! Luke is doing well and has been stable without any major problems since late Thursday night. His steroids will be finished soon and the doctors are hopeful but very concerned. His lungs have cleared up a little, but if these steroids did not bring improvement, there is only one other kind of steroid they can give him as a last resort. He is just too small and his lungs in such bad shape that if any infection or breathing issues return, it will be time to sit down, hear the options and make some incredibly tough decisions.
Since being put on the oscillator Thursday night, Luke has done VERY well. His oxygen has been weaned down from 100% to 60% without any dramatic changes in pulse and heart rate. This is the point at which Luke usually crashes and has to go back to 100% oxygen, which stabilizes him but is very bad for his lungs. This time, Luke is hanging in there and yesterday was moved out of isolation and back in the same pod as Jack!
Luke is being taken off the oscillator today and will be put on a conventional ventilator (easier on his lungs than the high-frequency vent he had been on). If all goes well, Luke will probably get a TPT tube tomorrow to start feedings. His IV fluids are keeping him stable, but without feedings, Luke really cannot grow and begin to heal. Because of his past episodes, he has been on paralytics to stop muscle movement and keep him from trying to breathe over the vent/oscillator. The feeding tube cannot be put in until the paralytics stop, and hopefully tomorrow will be the day!
Jack continues to do great. All of the grandparents have been able to hold him for the first time this weekend. He is tolerating increased feedings and will have his feeding tube pulled from his intestines up into his stomach to prepare him for real feedings.
Thursday and Friday were bad days, but things have changed incredibly during the weekend. Thanks to Bobby Hamilton, our campus pastor at New Life Church, for making a special mention about Luke to the entire church as he closed in prayer Saturday night. I also want to thank David Martindale, one of the mighty prayer warriors of our church, for visiting the boys yesterday to pray over them. His words were very comforting and encouraging.
We want to thank everyone for their continued prayers. Please continue to lift them up as the next few days are still very critical to Luke's survival and continued improvement.
Since being put on the oscillator Thursday night, Luke has done VERY well. His oxygen has been weaned down from 100% to 60% without any dramatic changes in pulse and heart rate. This is the point at which Luke usually crashes and has to go back to 100% oxygen, which stabilizes him but is very bad for his lungs. This time, Luke is hanging in there and yesterday was moved out of isolation and back in the same pod as Jack!
Luke is being taken off the oscillator today and will be put on a conventional ventilator (easier on his lungs than the high-frequency vent he had been on). If all goes well, Luke will probably get a TPT tube tomorrow to start feedings. His IV fluids are keeping him stable, but without feedings, Luke really cannot grow and begin to heal. Because of his past episodes, he has been on paralytics to stop muscle movement and keep him from trying to breathe over the vent/oscillator. The feeding tube cannot be put in until the paralytics stop, and hopefully tomorrow will be the day!
Jack continues to do great. All of the grandparents have been able to hold him for the first time this weekend. He is tolerating increased feedings and will have his feeding tube pulled from his intestines up into his stomach to prepare him for real feedings.
Thursday and Friday were bad days, but things have changed incredibly during the weekend. Thanks to Bobby Hamilton, our campus pastor at New Life Church, for making a special mention about Luke to the entire church as he closed in prayer Saturday night. I also want to thank David Martindale, one of the mighty prayer warriors of our church, for visiting the boys yesterday to pray over them. His words were very comforting and encouraging.
We want to thank everyone for their continued prayers. Please continue to lift them up as the next few days are still very critical to Luke's survival and continued improvement.
Sunday, October 18, 2009
Hesitant to update!
So I am a little hesitant to update the blog because it seems like every time we update to say that Luke is doing better--later that day he gets worse again! I don't want to jinx it but he is doing a little better. He had a good day yesterday and the nurses were able to decrease his oxygen to 71%! The doctors also were able to wean some of his vent settings. Last night he did good but they left his oxygen and vent settings alone because they didn't want to rush him. I am nervous because every time we get around this point Luke starts backsliding. The nurse told me today that his cultures are not coming back with any type of infection so they are going to move him out of isolation today!! He is going to be a little closer to brother and it will be a lot easier to see him. Yesterday Ken's parents came into town. The NICU and the other ICU's in the hospital are debating whether to restrict all visitors except parents starting Monday. Dick and Paula got to go see the boys yesterday and will see them tonight and hopefully they will not shut out everyone and they will get to see them the rest of their visit. We surprised Paula and let her hold Jack. My dad went last night and got to hold him too. My mom and Dick will get to hold him today. It is hard giving up my time with him but we wanted them to be able to hold him--especially if they ban everyone except us. We will post pictures later!! Thank you for the prayers and words of encouragement. They have helped us more than you know. Ken and I are worn out and emotionally exhausted but we are living one day at a time and trying to do the best we can. Thank you to our parents who have supported us through this time and we appreciate knowing that they are there WHENEVER we need them!! Love you guys!
Friday, October 16, 2009
I don't know how to pray..........
Jack is doing great--still tolerating feeds as they increase them. He is still doing good on his oxygen. He looks around a lot more and snuggles down with us when we hold him. He only cries when he is being messed with and calms down quickly. The last time he was weighed, he was almost 2lbs 13oz!
So Luke takes one little step forward and then end up 5 leaps backwards. He has a great day yesterday until the afternoon and then he got bad again. He had an episode after being suctioned where he dropped his heart rate and oxygen levels. After that his oxygen levels stayed low and they had to turn him back up to 100% oxygen. They did a chest xray--which looked worse. One issue is that Luke tries to breathe over the vent and doesn't let the vent do the work for him. The doctors tried him on a regular vent but his blood gas was worse so they decided to put him on an oscillator. Before they did that the doctor decided to give Lucas Vecuronium which paralyzes muscles to see if that would help him relax and not fight the vent. They also increased his Morphine and Ativan doses to keep him comfortable. Once he was on the oscillator, his gas was a little better and his chest xray looked a little better. They started him back on antibiotics and put a catheter to drain his urine. I was at the hospital until midnight last night while they were doing all this and trying to get him settled. Today he is doing okay--gasses not great but not bad either. He is still on 100% oxygen and his nitric is still at 20%.
So I am so frustrated and don't even know how to pray right now. I keep praying for his healing but that does not seem to be happening. I know that I am impatient but every time he gets a little better, he has huge setbacks. Him being on the oscillator is a big deal and I don't know much more they can do after that. I just look at him and he is so perfect but so sick. I just want him to be better or at least making some consistent progress. I want him to respond to the antibiotics, the other medications, and the vent changes. I keep praying for his healing and that is not working so what else do I pray for? I don't want him to suffer but I want him healthy and better. I know that God has a plan but I cannot and do not want to think that it is anything but healing him. So how do I pray? How do I pray for my little sweet perfect boy?
So Luke takes one little step forward and then end up 5 leaps backwards. He has a great day yesterday until the afternoon and then he got bad again. He had an episode after being suctioned where he dropped his heart rate and oxygen levels. After that his oxygen levels stayed low and they had to turn him back up to 100% oxygen. They did a chest xray--which looked worse. One issue is that Luke tries to breathe over the vent and doesn't let the vent do the work for him. The doctors tried him on a regular vent but his blood gas was worse so they decided to put him on an oscillator. Before they did that the doctor decided to give Lucas Vecuronium which paralyzes muscles to see if that would help him relax and not fight the vent. They also increased his Morphine and Ativan doses to keep him comfortable. Once he was on the oscillator, his gas was a little better and his chest xray looked a little better. They started him back on antibiotics and put a catheter to drain his urine. I was at the hospital until midnight last night while they were doing all this and trying to get him settled. Today he is doing okay--gasses not great but not bad either. He is still on 100% oxygen and his nitric is still at 20%.
So I am so frustrated and don't even know how to pray right now. I keep praying for his healing but that does not seem to be happening. I know that I am impatient but every time he gets a little better, he has huge setbacks. Him being on the oscillator is a big deal and I don't know much more they can do after that. I just look at him and he is so perfect but so sick. I just want him to be better or at least making some consistent progress. I want him to respond to the antibiotics, the other medications, and the vent changes. I keep praying for his healing and that is not working so what else do I pray for? I don't want him to suffer but I want him healthy and better. I know that God has a plan but I cannot and do not want to think that it is anything but healing him. So how do I pray? How do I pray for my little sweet perfect boy?
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