Luke has been home from the hospital for 10 days now and is doing wonderful. The older kids continue to adore him, and he looks with interest at their wild activities and sleeps through their noise. Life is good. We are blessed! It's not easy, but it's our journey and we are grateful to be on it with these gifts God has given us.
Today is Luke's 4 month and my Dad's 60th birthday! It is also a day in which many went to show their love and support to our family because of my Grandma Templeton's passing. Tomorrow morning is her funeral, and we were not able to travel to go to it because of Luke's health. Even though we have been an Air Force family for 14 years now, we have managed to make it back to Indiana for most major family events. It breaks my heart not to be there to hug my family and be a part of my Grandma's funeral, but I know it is the right thing to stay here, and I know she would understand. She is looking down on us from Heaven, so she has gotten to meet Luke and is also with our son, Brady. That gives me peace. I will always remember her and our special time together, especially as I drink hot tea and carry on her traditional baked apples recipe each Christmas.
Today is a big day at our house for other reasons too. Andy is resuming his training tomorrow, and I am left here to hold down the fort. I should be sleeping now, I know, but I am a bit nervous to sleep. I am letting God guide and help me during my times of anxiety, and He is showing me the way for sure! I have been doing much better emontionally than I expected being home. I have been able to leave the house a couple times for errands and let Luke be cared for by others (Andy and Ms DiAnn). I am able to do housework and play with the older kids without worrying about Luke. The monitors and oxygen have helped to give me more peace of mind that he is okay. I am beyond grateful that Luke is home, healthy, and most importantly, still here. I can't say it enough. Praise God for answering our prayers!!
Sunday, January 27, 2013
Thursday, January 17, 2013
Going Home!
Today marks 5 weeks that Luke has been here at OU Children's Hospital. He has improved so much, and has won over the hearts of so many with his infectious smiles!! We are beyond grateful to God for saving his life and allowing us to go on this journey together. We are thankful to all He has provided to help us get through this time-from the firefighter who intubated Luke, to the doctors, nurses, and respitory therapists who helped get him well, to all of you praying for and thinking of us.
We are happy to announce that Luke is getting discharged from the hospital today!!! He will go home on oxygen for awhile to help his lungs get stronger and hopefully keep him from having anymore pulmonary hypertension episodes. He has taken his bottles by mouth for over 24 hours, so we get to take his NG tube out and leave it here!
As you can imagine, everyone at our house is very excited to be together again. We appreciate your continued prayers.
We are happy to announce that Luke is getting discharged from the hospital today!!! He will go home on oxygen for awhile to help his lungs get stronger and hopefully keep him from having anymore pulmonary hypertension episodes. He has taken his bottles by mouth for over 24 hours, so we get to take his NG tube out and leave it here!
As you can imagine, everyone at our house is very excited to be together again. We appreciate your continued prayers.
Friday, January 11, 2013
Extubated!
We want to share the news that Luke got extubated (taken off the ventilator) on Tuesday afternoon!! After my last post, we had some rough patches, related to withdrawal from some of his narcotics, and because of gas/constipation/tummy problems. However, it all got resolved and on Monday, they turned his ventilator down so that he was doing all of the work again. They left it like that all day and night, and Luke did great. So, on Tuesday, Andy and I agreed with the doctors that Luke was ready. I must admit that as much as I have been looking forward to this day, I really was anxious about it instead of excited. My Mama Bear instincts made it hard to stand there and watch Luke cry and struggle for an hour before they gave him some morphine to help calm him down. I kept telling Luke (and myself) that it was all going to be worth it, and it was! He didn't have the best blood gas numbers (ph and carbon dioxide) for a few hours, so they wouldn't let me hold him because he wasn't stable enough. He looked good clinically (his oxygen level, respitory and heart rates), so they just gave him some time. When the night shift came on, I asked AGAIN about holding him and they let me. And low and behold, his next blood gas numbers were perfect!! I made sure the staff knew what the change was that made the difference (according to me, of course), so they would consider allowing a mother to hold her baby sooner next time. The doctor jokingly told me that I was here as a mom and not a Child Life Specialist. :) I hadn't told this group of doctors that's what I did, so I guess word got around. While I am on this topic, I want to commend the medical staff for doing such an amazing job caring for Luke and keeping this very attentive Mama in the know. Overall, it has been surprising to me how involved they have let us be in the rounds each morning, and with decisions regarding Luke's care.
Anyway, back to our little miracle. Today, he is on the lowest setting of his high flow oxygen, so he should get switched to just a nasal cannula later today. Once he is only on that, we are ready to leave the PICU and go to another room on the regular unit. It is a step in the right direction, but I will definitely miss the staff and protection of the locked doors here in the PICU. I just want to cover Luke up or put him in a bubble when we go in the hallway to transfer rooms because so many patients have RSV and Luke doesn't! I do NOT want to have to come back and do this again, or stay longer because of someone sharing their cough and germs with us.
The last couple of nights have seemed very long. Luke had a few episodes of intense withdrawal from his fentanyl and versed, as show by his heart rate in the 200's and tremors. It was so hard for me to watch, but they gave what they call "rescue doses" of morphine a couple times to help him through it. He is still on Methadone and Valium, which will slowly be tapered off, but not before we go home. He will have to start taking his bottles again before we can go home. He is just very tired from working so hard to breathe, and his muscles are weak from not being used in a month. He took small amounts yesterday from a bottle twice, and took half of his noon bottle today. I asked for a speech therapy consultation, so they should be by today. I feel like he will catch on again for sure, but don't know how long it will be before he has the stamina to take all of his bottles.
As for the rest of the family, they are doing okay. Eli went back to school this week, and did much better than expected getting up and ready for the bus. Andy doesn't feel well, so he has stayed home with them the past couple of days. He did bring the kids and dinner up to the hospital on Wednesday night. All the kids came back and saw Luke and then I took them to the waiting room and we played while Andy held Luke. (This was before Andy had his sore throat, and he had a mask on the whole time)!
We have met so many families on this journey who are going through the same, or even more stressful situations. We try to encourage and support them as we are able to. There are parents who have been away from their other kids for weeks because they live far away, and parents who have been in and out of here for years with their chronically ill child. And, unfortunately, some parents who had to leave without their child because they didn't win the battle. We pray for them, and ask you to also. We are fully aware of how different this could have gone, and are grateful to God for his mercy and love for us. We know He loves every single child here (and adults too), and we don't pretend to understand the reason that some children live and some die. We just remain faithful and thankful that our prayers were answered in this way, and that Luke will be coming home with us soon. So far, it seems like this past month hasn't had any negative affect on his brain development. Only time will tell for sure, but he sure seems like the smiley, interactive baby that I knew before this happened. And, no matter what, we love and adore him unconditionally, and are beyond thrilled that he is doing so well!
Anyway, back to our little miracle. Today, he is on the lowest setting of his high flow oxygen, so he should get switched to just a nasal cannula later today. Once he is only on that, we are ready to leave the PICU and go to another room on the regular unit. It is a step in the right direction, but I will definitely miss the staff and protection of the locked doors here in the PICU. I just want to cover Luke up or put him in a bubble when we go in the hallway to transfer rooms because so many patients have RSV and Luke doesn't! I do NOT want to have to come back and do this again, or stay longer because of someone sharing their cough and germs with us.
The last couple of nights have seemed very long. Luke had a few episodes of intense withdrawal from his fentanyl and versed, as show by his heart rate in the 200's and tremors. It was so hard for me to watch, but they gave what they call "rescue doses" of morphine a couple times to help him through it. He is still on Methadone and Valium, which will slowly be tapered off, but not before we go home. He will have to start taking his bottles again before we can go home. He is just very tired from working so hard to breathe, and his muscles are weak from not being used in a month. He took small amounts yesterday from a bottle twice, and took half of his noon bottle today. I asked for a speech therapy consultation, so they should be by today. I feel like he will catch on again for sure, but don't know how long it will be before he has the stamina to take all of his bottles.
As for the rest of the family, they are doing okay. Eli went back to school this week, and did much better than expected getting up and ready for the bus. Andy doesn't feel well, so he has stayed home with them the past couple of days. He did bring the kids and dinner up to the hospital on Wednesday night. All the kids came back and saw Luke and then I took them to the waiting room and we played while Andy held Luke. (This was before Andy had his sore throat, and he had a mask on the whole time)!
We have met so many families on this journey who are going through the same, or even more stressful situations. We try to encourage and support them as we are able to. There are parents who have been away from their other kids for weeks because they live far away, and parents who have been in and out of here for years with their chronically ill child. And, unfortunately, some parents who had to leave without their child because they didn't win the battle. We pray for them, and ask you to also. We are fully aware of how different this could have gone, and are grateful to God for his mercy and love for us. We know He loves every single child here (and adults too), and we don't pretend to understand the reason that some children live and some die. We just remain faithful and thankful that our prayers were answered in this way, and that Luke will be coming home with us soon. So far, it seems like this past month hasn't had any negative affect on his brain development. Only time will tell for sure, but he sure seems like the smiley, interactive baby that I knew before this happened. And, no matter what, we love and adore him unconditionally, and are beyond thrilled that he is doing so well!
Friday, January 4, 2013
2013 is Luke's Year!
So sorry for all of you who aren't connected to us through Facebook. I tend to type a lot when I blog, so I end up just putting a short update on FB because I am so tired when I get to bed.
Our latest news is that Luke is doing great! After slowly weaning him from the nitric oxide, he has begun weaning on his ventilator rather quickly. We joke that it was because the doctor mentioned that we should be prepared for Luke to need a tracheotomy. However, if he continues to wean from the vent like he has the last few days, we won't need to do that! Today (Saturday), he has been on the lowest vent settings all day and they did a two hour test by putting the ventilator on pressure support mode. This means that Luke was doing all the work of breathing on his own, and the ventilator would just kick in and help if he needed it. We are almost at the two hour mark now, and he has done great! He hasn't shown any signs of getting tired. They will let him rest tonight and do some longer stretches on pressure support tomorrow. If he continues doing well, he should be off the ventilator within a couple days!! We are beyond thrilled and are trying to remain patient so that its done when he is ready and not before.
They have also been weaning back Luke's narcotics, which means he has been a lot more alert. He has done very well when awake, surprising the nurses with his big smiles and contentment. Usually babies are very agitated when you start taking away drugs they have become used to! Since he is more stable, they allowed Andy and I both to hold him today. What therapy for us, but I can tell you that it just makes me more anxious to get him off the vent so I can hold him more (and snuggle tighter)! He definitely knows my voice, and I usually get him to smile several times in a row. :)
As for the other kids, they have had an amazing break. The Warran family surprised us and drove out from Indiana! The kids got to swim at the hotel and play together with all their new toys. I got to have some girl time with my dear friend, and Luke got to meet his Uncle Tim. The guys even snuck away for sushi one night. We also got to see the Allen family for a few days on their way back to Altus from Indiana. Watching Olivia and Carter at with our kids brings us so much joy. We will miss being so close to them when we move to Florida!
As for the rest of the month, we continue to take it a day at a time. Andy is still able to be here on emergency leave. Eli starts back to school on Monday. We have decided to pull Jordan and Drew out of school to try to protect them, and Luke from all the germs that are so prevalent this time of year. We plan to just hunker down once Luke gets home and wait to explore once Luke is a little older. They have told us that he will get sick very quickly, and severely compared to other kids because of his immature lungs and the scarring that they have, and also because of his pulmonary hypertension.
As for me, Luke's smiles are very therapeutic. I am still working on my anxiety over taking him home. I still relive the morning he had to come here often, but less than last week, and less than the first week. I don't yet know how I will be able to sleep, but am working through it all with God. He has been with us every step of this journey, and I know He will help me through the next phase too. I am going to be a lot more protective than I was because I have to for Luke's sake. My guess is that it will make the next few months seem lengthy, but he is worth it!
Our latest news is that Luke is doing great! After slowly weaning him from the nitric oxide, he has begun weaning on his ventilator rather quickly. We joke that it was because the doctor mentioned that we should be prepared for Luke to need a tracheotomy. However, if he continues to wean from the vent like he has the last few days, we won't need to do that! Today (Saturday), he has been on the lowest vent settings all day and they did a two hour test by putting the ventilator on pressure support mode. This means that Luke was doing all the work of breathing on his own, and the ventilator would just kick in and help if he needed it. We are almost at the two hour mark now, and he has done great! He hasn't shown any signs of getting tired. They will let him rest tonight and do some longer stretches on pressure support tomorrow. If he continues doing well, he should be off the ventilator within a couple days!! We are beyond thrilled and are trying to remain patient so that its done when he is ready and not before.
They have also been weaning back Luke's narcotics, which means he has been a lot more alert. He has done very well when awake, surprising the nurses with his big smiles and contentment. Usually babies are very agitated when you start taking away drugs they have become used to! Since he is more stable, they allowed Andy and I both to hold him today. What therapy for us, but I can tell you that it just makes me more anxious to get him off the vent so I can hold him more (and snuggle tighter)! He definitely knows my voice, and I usually get him to smile several times in a row. :)
As for the other kids, they have had an amazing break. The Warran family surprised us and drove out from Indiana! The kids got to swim at the hotel and play together with all their new toys. I got to have some girl time with my dear friend, and Luke got to meet his Uncle Tim. The guys even snuck away for sushi one night. We also got to see the Allen family for a few days on their way back to Altus from Indiana. Watching Olivia and Carter at with our kids brings us so much joy. We will miss being so close to them when we move to Florida!
As for the rest of the month, we continue to take it a day at a time. Andy is still able to be here on emergency leave. Eli starts back to school on Monday. We have decided to pull Jordan and Drew out of school to try to protect them, and Luke from all the germs that are so prevalent this time of year. We plan to just hunker down once Luke gets home and wait to explore once Luke is a little older. They have told us that he will get sick very quickly, and severely compared to other kids because of his immature lungs and the scarring that they have, and also because of his pulmonary hypertension.
As for me, Luke's smiles are very therapeutic. I am still working on my anxiety over taking him home. I still relive the morning he had to come here often, but less than last week, and less than the first week. I don't yet know how I will be able to sleep, but am working through it all with God. He has been with us every step of this journey, and I know He will help me through the next phase too. I am going to be a lot more protective than I was because I have to for Luke's sake. My guess is that it will make the next few months seem lengthy, but he is worth it!
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