"And my God will meet all your needs according to the riches of his glory in Christ Jesus." Philippians 4:19
Mary Graham is still stable and on the lowest settings of her ventilator. The doctors had thought they would take her off the ventilator, however, her belly is still distended and tight and they want all the gas to come out before she is breathing on her own. So the plan is to wait another night. They don't want to cause any more problems went she comes of the ventilator and I'm all for that. She got a blood transfusion this morning after having her central line placed and that went smoothly. She has had lasiks to help get more of the fluid out and that seems to be helping also.I am thankful that she is not too aware of her pain. It is really sad when she cries though, a few times today she has gotten really upset, has tears rolling down her cheeks and opening her mouth, but no sound comes out because of the tube in her throat. These are times when she needs pain medicine and usually calms down quickly, but it's very hard to watch and not be able to hold her.
We are thankful for these little steps and ask you to pray for a good night and for her belly and fluids to come down. Also pray for no more complications, infections or lung issues.
Today I have been thinking about God's relationship to MG, how much he loves her, and how I'm always trying to get in the middle of that and fix things myself-what momma wouldn't be doing that? However, after remember this verse, I am trying to let go and trust that God know's Mary Graham's specific needs and praying that he is guiding the doctors, nurses and us to meet those needs. As always, thank you for praying.
Saturday, March 17, 2012
Day 4
MG had a restful night and was on the lowest settings on the ventilator this morning and her lungs are looking much better. We are thankful for these things. Please continue to pray for her. She is having a blood transfusion now and is still very swollen and has a distended belly because of gas built up. The concerns for the fluid and gas are that they can affect her lungs. Also, one of her IV lines failed so they put in a central line, which isn't uncommon. That procedure went fine, but she is still waking up from that and not quite back to her original ventilator settings.
Please pray for her gas and fluids to come down today. Also, they are talking about taking her off the ventilator maybe later today, please pray for no complications when that occurs. Pray for no infections and no more complications to arise. Pray for greater improvements and healing over the next 24 hours.
Thank you for standing in the gap for us, when we are often too exhausted to pray and just walking through this minute by minute. Our God is greater than all of this.
Please pray for her gas and fluids to come down today. Also, they are talking about taking her off the ventilator maybe later today, please pray for no complications when that occurs. Pray for no infections and no more complications to arise. Pray for greater improvements and healing over the next 24 hours.
Thank you for standing in the gap for us, when we are often too exhausted to pray and just walking through this minute by minute. Our God is greater than all of this.
Friday, March 16, 2012
Baby steps
Rock of Ages, when the day seems long
From this labor and this heartache I have come
The skies will wear out, but You remain the same
Rock of Ages, I praise Your name.
Mary Graham is doing well. She is still sedated and this morning was having some pain, the drs had taken her pains meds down a lot after she stopped breathing and was put on the ventilator. So she had some faster breathing and higher heart rate this morning, but now they have upped her pain meds a little and she has had a calm afternoon. She is getting more fluids out and I believe her color looks a little better too. And her right lung is improving. Praise God for the tiny baby steps she is taking in the right direction. Although she still has a long way to go. I am glad she is still sedated at this point because she is just sleeping through the pain. Our pulmonologist did another broncoscopy this afternoon and believes her bronchus looks a little better than before her veptr placement. There is talk of starting to wean her from the ventilator tomorrow, but they said they aren't in a hurry and just letting her drive the ship. Please pray for her pain, continued improvments, and patience as we wait for her to heal. Also for this awesome team of doctors and wisdom for them about when to take her off the ventilator.
The lyrics to the song, "Rock of Ages" is above. I have listened to this song over and over again. We do praise Him for being a Rock that is unchanging and walking us through these extremely long and darker days and I still believe there are brighter days ahead. We feel your prayers, so many prayers being poured out. There are many moments I want to share, when my brain is less foggy about God's hand even in small details. But one moment that I have see God's hand is through Lee.....I have to say that Lee has been a rock through all of this, and I believe it was a blessing that just I experienced when MG coded. He came just as they had gotten her more stable and has been able to be so strong. God is meeting our needs and we see that He truly is the God of all comfort.
We are very blessed to have such support and love from all of you and are always grateful for the continued prayers.
I love this picture of MG, taken just before her surgery
From this labor and this heartache I have come
The skies will wear out, but You remain the same
Rock of Ages, I praise Your name.
Mary Graham is doing well. She is still sedated and this morning was having some pain, the drs had taken her pains meds down a lot after she stopped breathing and was put on the ventilator. So she had some faster breathing and higher heart rate this morning, but now they have upped her pain meds a little and she has had a calm afternoon. She is getting more fluids out and I believe her color looks a little better too. And her right lung is improving. Praise God for the tiny baby steps she is taking in the right direction. Although she still has a long way to go. I am glad she is still sedated at this point because she is just sleeping through the pain. Our pulmonologist did another broncoscopy this afternoon and believes her bronchus looks a little better than before her veptr placement. There is talk of starting to wean her from the ventilator tomorrow, but they said they aren't in a hurry and just letting her drive the ship. Please pray for her pain, continued improvments, and patience as we wait for her to heal. Also for this awesome team of doctors and wisdom for them about when to take her off the ventilator.
The lyrics to the song, "Rock of Ages" is above. I have listened to this song over and over again. We do praise Him for being a Rock that is unchanging and walking us through these extremely long and darker days and I still believe there are brighter days ahead. We feel your prayers, so many prayers being poured out. There are many moments I want to share, when my brain is less foggy about God's hand even in small details. But one moment that I have see God's hand is through Lee.....I have to say that Lee has been a rock through all of this, and I believe it was a blessing that just I experienced when MG coded. He came just as they had gotten her more stable and has been able to be so strong. God is meeting our needs and we see that He truly is the God of all comfort.
We are very blessed to have such support and love from all of you and are always grateful for the continued prayers.
I love this picture of MG, taken just before her surgeryDay 3 Post Op
Wanted to just give a small update. Mary Graham had a restful night with no big issues. She has a slight elevated heart rate and respiratory rate, but overall she is doing well. She still has a ways to go, so we ask that you continue to pray for her to make improvements over the next 24 hours with no setbacks. They possibly want to take her off the ventilator tomorrow. Praise God that he has brought her this far from her horrible night and we know it takes time to see improvements in such a little girl. We are desperate to see her with her eyes open and smiling and ask that you pray for God to sustain us and give us strength as it has been hard. But we are choosing to trust in Him. We are so grateful so many are praying for her and our family.
17 The LORD your God is with you,
the Mighty Warrior who saves.
He will take great delight in you;
in his love he will no longer rebuke you,
but will rejoice over you with singing.” Zephaniah 3:17
17 The LORD your God is with you,
the Mighty Warrior who saves.
He will take great delight in you;
in his love he will no longer rebuke you,
but will rejoice over you with singing.” Zephaniah 3:17
Thursday, March 15, 2012
Continued prayers
Some of you already know that Mary Graham gave us quite a scare in the early morning hours. Because of her heavy sedation, her partially collapsed lungs and some built up secretions in her throat and chest, she stopped breathing and had to be placed on a ventilator. They were able to get her breathing again while trying to intubate her, but then she stopped again before they got the tube in place. Needless to say it was very scary to experience. The doctor explained that all of the things combined with her lungs and major surgery, a baby her age and size just can't do everything on her own. Now she is resting comfortably after being a bit agitated for a while. Her stats are good and she is stable and doing well considering all she went through. They did a partial blood transfusion, but she got a fever so they stopped for now and are constantly checking her labs. We aren't sure how long they will want to keep her on the ventilator, possibly a couple days, so she can rest and heal.
Please continue to lift her up. Pray for her to continue to do well, show improvement and have no more major set backs. Pray for the doctors and nurses to have wisdom in how to best treat her and help her heal.
Last night shook me for sure. Please pray for us to trust in the Great Physician and know for certain that He has her in His hands. Thank you so much for praying and loving us.
Please continue to lift her up. Pray for her to continue to do well, show improvement and have no more major set backs. Pray for the doctors and nurses to have wisdom in how to best treat her and help her heal.
Last night shook me for sure. Please pray for us to trust in the Great Physician and know for certain that He has her in His hands. Thank you so much for praying and loving us.
Wednesday, March 14, 2012
Yesterday and Today
Thank you for praying us through yesterday. I'm sorry it has taken me a while to update the blog. God's hands were in every detail. Mary Graham's surgery went smoothly, lasted about 5 hours total and Dr. Campbell is very pleased with the results so far. They were able to cut through two ribs, spreading them wider to given more room in her chest wall. Then he attached two veptr rods on either side of the spine from shoulder to pelvis. Her xrays already show improvement, her spine is straighter, ribs opened and lifted and she actually is one inch longer now. It really is amazing all they can do. We praise God for bringing her through the surgery and ask you to continue to pray for her.
Today is just post op day 1 and it has been a rollercoaster. Last night she was in a lot of pain, her heartrate was high and she started running fever, so it was pretty rough. They have better management of her pain, but she is labored in her breathing today, still running fever and her heartrate has been up and down. Her xrays are showing today that parts of her lungs are a little collapsed, so they just put her on a cpap machine to help her breathe fully and hoping to not have to put her on a ventilator. The ICU staff is wonderful and trying to find the best ways to treat her. As you can imagine her body has been through an enormous trauma....it's as if she has a whole new body and she is adjusting to that and trying to cope with the pain of the actual surgery. The doctors have said this is normal for everything she has been through and they are totally on top of things.
So, I feel relieved that the surgery is over and God carried her through. Today has felt like we have been here for 7 days. I ask you to pray for these next few days - I am constantly staring at the monitors and it can be unnerving for a mother. Pray for her lungs, her breathing, heart rate and overall healing. Pray for tonight and tomorrow to show much improvement.
I did get out of the hospital and went back to the RMH for a few hours today and the one verse I read was, "Be still and know that I am God." I felt like God was saying, "I've still got her, be still." Now that she is in sight it's easy to think I have more control, but I really don't. Pray we can rest in Him and feel his peace. He has been so faithful through it all.
We are in a shared room in the ICU, and it just happens to be with the sweet little 10 year old girl and her family that I met online. She had her veptr implants yesterday too and we had dinner with them at the RMH the night before the surgery. Just cool how God is in all the details.
Thank you for continuing to faithfully pray for Mary Graham. I have better access to a computer and will try and update more tomorrow.
Today is just post op day 1 and it has been a rollercoaster. Last night she was in a lot of pain, her heartrate was high and she started running fever, so it was pretty rough. They have better management of her pain, but she is labored in her breathing today, still running fever and her heartrate has been up and down. Her xrays are showing today that parts of her lungs are a little collapsed, so they just put her on a cpap machine to help her breathe fully and hoping to not have to put her on a ventilator. The ICU staff is wonderful and trying to find the best ways to treat her. As you can imagine her body has been through an enormous trauma....it's as if she has a whole new body and she is adjusting to that and trying to cope with the pain of the actual surgery. The doctors have said this is normal for everything she has been through and they are totally on top of things.
So, I feel relieved that the surgery is over and God carried her through. Today has felt like we have been here for 7 days. I ask you to pray for these next few days - I am constantly staring at the monitors and it can be unnerving for a mother. Pray for her lungs, her breathing, heart rate and overall healing. Pray for tonight and tomorrow to show much improvement.
I did get out of the hospital and went back to the RMH for a few hours today and the one verse I read was, "Be still and know that I am God." I felt like God was saying, "I've still got her, be still." Now that she is in sight it's easy to think I have more control, but I really don't. Pray we can rest in Him and feel his peace. He has been so faithful through it all.
We are in a shared room in the ICU, and it just happens to be with the sweet little 10 year old girl and her family that I met online. She had her veptr implants yesterday too and we had dinner with them at the RMH the night before the surgery. Just cool how God is in all the details.
Thank you for continuing to faithfully pray for Mary Graham. I have better access to a computer and will try and update more tomorrow.
Monday, March 12, 2012
Tomorrow and thank you
"They will help you carry the burden of the people so that you will not have to carry it alone" Numbers 11:17
Not sure that I have really ever read the book of Numbers, but I'm trying (like I said, trying) to read through the One Year Bible right now and Numbers is where I am. Last night I read of Moses telling God he just couldn't carry the burden of all the Israelites on his own anymore. So God took the Spirit of the burden off of Moses and put it on those around him. God didn't take away the burden all together, but brought people to help carry the burden. Our God is so full of compassion and mercy that when Moses cried out to him, He helped him and helped him through His people. This is the beautiful picture of what I am experiencing through each of you who are truly carrying this burden with us and all I can say is thank you. Your prayers mean so much and you are just helping us in so many ways. Thank you for the emails, text, cards, verses, phone calls, etc. They really are such a source of encouragement. The love of Christ is so evident.
We arrived yesterday, had smooth travel and the weather is great in Philly. Not too cold at all. The Ronald McDonanld House was full, so we stayed at the Sheraton last night. It's been nice and we walked to CHOP this morning. However, today we called RMH again and they have a room available for us. We are so thankful for this! Thanks to all those praying for this. They said it's a smaller room with a shared bathroom. But, we really will be at the hospital so much and I am planning to spend the night there anyway. In fact, in the ICU is divided into separate rooms and there is a place for parents to sleep in the room with their child and parents are allowed in 24/7 and then when MG is moved to the floor we will stay with her too.
So, today we met with Dr. Campbell again, anesthesia and did x-rays and bloodwork. MG was not so happy with the bloodwork, and then they called and we had to go back and redo some of it :( But now she is napping back in the hotel. She has been in great spirits the last two days, seems healthy and feeling good. She is definitely becoming more aware of what's going on around her and dislikes everyone dressed in scrubs. We spoke more with Dr. Campbell about tomorrow and he showed us the xrays, CT and MRI again. It's always hard to see these, her severe spinal curve and rigid back. But we know this is the best hope for her lungs and growth and we know it is the right time. He is hopeful that the veptr rods will expand MG's chest wall, but says sometimes we just don't know. Please pray for positive results from the veptr rods, for her lungs to be able to grow and strengthen despite her stiffness and help stablize or even improve her scoliosis. We are still so very grateful for Dr. Campbell and his team and what they do, she is in good hands.
I guess that is all for now, we will be at the hospital early in the morning and surgery will begin around 7:30 am. Please continue to pray for the surgery, no complications, her healing and recovery. Thank you gain for praying for us. A sweet friend said she pictured our family, friends and those praying for MG standing in a circle holding hands around the hospital praying throughout the day tomorrow...that is what I am going to picture also. "God is our refuge and strength, our ever present help in trouble" He hears our prayers and has been and will be faithful. I will update as soon as I can tomorrow.
Not sure that I have really ever read the book of Numbers, but I'm trying (like I said, trying) to read through the One Year Bible right now and Numbers is where I am. Last night I read of Moses telling God he just couldn't carry the burden of all the Israelites on his own anymore. So God took the Spirit of the burden off of Moses and put it on those around him. God didn't take away the burden all together, but brought people to help carry the burden. Our God is so full of compassion and mercy that when Moses cried out to him, He helped him and helped him through His people. This is the beautiful picture of what I am experiencing through each of you who are truly carrying this burden with us and all I can say is thank you. Your prayers mean so much and you are just helping us in so many ways. Thank you for the emails, text, cards, verses, phone calls, etc. They really are such a source of encouragement. The love of Christ is so evident.
We arrived yesterday, had smooth travel and the weather is great in Philly. Not too cold at all. The Ronald McDonanld House was full, so we stayed at the Sheraton last night. It's been nice and we walked to CHOP this morning. However, today we called RMH again and they have a room available for us. We are so thankful for this! Thanks to all those praying for this. They said it's a smaller room with a shared bathroom. But, we really will be at the hospital so much and I am planning to spend the night there anyway. In fact, in the ICU is divided into separate rooms and there is a place for parents to sleep in the room with their child and parents are allowed in 24/7 and then when MG is moved to the floor we will stay with her too.
So, today we met with Dr. Campbell again, anesthesia and did x-rays and bloodwork. MG was not so happy with the bloodwork, and then they called and we had to go back and redo some of it :( But now she is napping back in the hotel. She has been in great spirits the last two days, seems healthy and feeling good. She is definitely becoming more aware of what's going on around her and dislikes everyone dressed in scrubs. We spoke more with Dr. Campbell about tomorrow and he showed us the xrays, CT and MRI again. It's always hard to see these, her severe spinal curve and rigid back. But we know this is the best hope for her lungs and growth and we know it is the right time. He is hopeful that the veptr rods will expand MG's chest wall, but says sometimes we just don't know. Please pray for positive results from the veptr rods, for her lungs to be able to grow and strengthen despite her stiffness and help stablize or even improve her scoliosis. We are still so very grateful for Dr. Campbell and his team and what they do, she is in good hands.
I guess that is all for now, we will be at the hospital early in the morning and surgery will begin around 7:30 am. Please continue to pray for the surgery, no complications, her healing and recovery. Thank you gain for praying for us. A sweet friend said she pictured our family, friends and those praying for MG standing in a circle holding hands around the hospital praying throughout the day tomorrow...that is what I am going to picture also. "God is our refuge and strength, our ever present help in trouble" He hears our prayers and has been and will be faithful. I will update as soon as I can tomorrow.
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