I'm back in Ann Arbor with Gavin. He is having a good day. It was very good to see him again! He looks a little bigger and maybe even cuter! His infection is gone and he isn't running a fever anymore. He still needs the pacemaker, so they've decided since the infection is cleared up, they are going to do the surgery tomorrow afternoon to put in the permanent pacemaker. This is another open chest surgery, but not open heart. After he recovers from this surgery they are going to give him a few more days to get off the ventilator and if this fails they are going to go ahead with the trach. They are pretty sure that this will be the case. The leak in his valve is a little bit worse and his lungs just can't handle it with the increased pressures, fluid and scarring that has occured from this and illness. This does not sound good, but it will get him home to grow for valve replacement surgery and it will be a better life for him. He won't be sedated, he'll be able to be held, be more comfortable, be able to move around, learn to eat by mouth again, etc. The system he would be sent home on is very small, they say the size of a laptop, and not as scary and as much upkeep as the one they use here. So, though not what we wanted, it does have benefits.
We will be O.K. with this. God will make sure of that. He has a reason for all of this. We sure are learning a lot, if nothing else! A doctor today said that we will know more than many doctors, concerning the trach and vent! So, there's something! It's always great to learn! But, really, God has already shown us reasons for going through all of this. There are so many positives, you just have to look for them! I, for one, am thankful for this opportunity in many ways. I'm not going to lie, of course I'd have things much different, but I am glad that I can see the positives still and have learned so much from this. God is Good!
Have a great day! We appreciate all of you! Your thoughts, prayers, notes, gifts, meals and time are huge blessings!!! We can't thank you enough!
Love, Alicia
For someone who can't even talk, Gavin has certainly taught us many valuable lessons.....
Wednesday, February 28, 2007
Monday, February 26, 2007
Gavin has had a rough night and day. He now has an infection in his lungs and is on three antibiotics for this. He also had to go back high on the ventilator settings. He is also still needing the pacemaker to keep his heart in a normal rhythm. They can't do surgery to put in a permanent pacemaker until the infection is cleared up more. Poor little guy! I feel so bad for him! I wish I could be there with him, but I'm still sick, although starting to feel better today. Plus, I know the rest of the family needs me around too at times. Jacob asked when I was going back and I told him Wednesday morning, then I asked him when he thought that I should go back. He said never! I wish this were the case too! Nolan keeps telling me how glad he is that I'm home and even said "your the best mom in the universe!" He is sad that Gavin isn't here though and tells people that the whole family isn't together yet! It's so sad for me to see them havig to go through all of this! Caleb seems, well..., like Caleb! He's a happy kid most of the time, unless he's not getting his way! Although they say he really misses me when I'm gone. We are very blessed with the enormous support that our family and friends are giving us during this time! Things could be so much harder for us and the kids without this, especially the Grandmas!!! We couldn't even express how much their support and love has meant to us!!!
Our biggest support, of course, comes from God! We have days and minutes of feeling down, but over all He has kept us strong and at peace! We know He has a greater purpose for all of us enduring this. We also know that He will not give us more than we can bear. We are thankful for this knowledge which helps us when we feel like we can't handle it anymore. Plus, God loves Gavin more than I could even try to (which is a lot!!!).
Thankyou for your continued prayers and support!
Love, Alicia
Our biggest support, of course, comes from God! We have days and minutes of feeling down, but over all He has kept us strong and at peace! We know He has a greater purpose for all of us enduring this. We also know that He will not give us more than we can bear. We are thankful for this knowledge which helps us when we feel like we can't handle it anymore. Plus, God loves Gavin more than I could even try to (which is a lot!!!).
Thankyou for your continued prayers and support!
Love, Alicia
Sunday, February 25, 2007
Again, it is hard being away from Gavin, but very nice to be home with the rest of the family. It turns out that it was a good weekend to come home because I ended up getting a bad cold yesterday and I wouldn't really be able to visit with Gavin anyway. It would be very bad to pass this on to him and the other patients.
On our many calls to see how he is doing, they have been good reports. He is comfortable and down a little bit on the vent. He still needs the pacemker, though. We were really hoping he could come off, but we'll see. It's in the Lord's hands!
Have a great weekend!
Love, Alicia
On our many calls to see how he is doing, they have been good reports. He is comfortable and down a little bit on the vent. He still needs the pacemker, though. We were really hoping he could come off, but we'll see. It's in the Lord's hands!
Have a great weekend!
Love, Alicia
Thursday, February 22, 2007
I got kicked out of Gavin's room. They have times during the day that visitors have to leave. Such as, when the nurses give report to each other(privacy issues), when a patient in your same room comes back from surgery(like now) and if a patient is in a crisis(not good).
I was hoping I wouldn't have to leave his room today because I'm planning on heading home at 3 o'clock which is the time of day visitors are asked to step out for nurse report. I should be able to go back in within an hour.
Gavin is doing good and not so good today. He's breathing better! They were able to put him on a different mode of ventilating and wean him down on oxygen levels and the number of breaths the vent is giving him, so that's good! On the not so good side, he is still in heart block and needing the pacemaker and he has been spitting up some of his feedings. They said they wanted to wait to see if his heart function comes back on it's own until Monday, then they would decide whether or not to put in a permanent pacemaker. As for the feeding issue, the are going to give him a less amount of formula , but more often. Hopefully he will tolerate this better.
He is awake alot this morning, even though highly 'sedated'. He looks so cute, looking around and hangin' out! One of the nurses that was helping with him yesterday said that he must be made of steel! She called him Superman because even with all that they have him medicated with, he still finds a way to be awake!
It has been hard lately being patient. I keep thinking that this is never going to end! I have a picture hanging up behind Gavin's bed that says: "Have faith in all things beautiful; the sun when it is hidden, the spring when it is gone." It helps me to think that our 'sun' is just hidden for now, but that it will return again! When I first read this I thought about God being my beautiful thing that the quote talks about. We can't see him, but we have faith that he is there! He may be hidden from our eyes, but He has given us the faith to get through, knowing that He is in control and will always take care of those who love Him! So, knowing this helps when I can't always see that the 'spring' will return again someday! What a blessing!
Love, Alicia
I was hoping I wouldn't have to leave his room today because I'm planning on heading home at 3 o'clock which is the time of day visitors are asked to step out for nurse report. I should be able to go back in within an hour.
Gavin is doing good and not so good today. He's breathing better! They were able to put him on a different mode of ventilating and wean him down on oxygen levels and the number of breaths the vent is giving him, so that's good! On the not so good side, he is still in heart block and needing the pacemaker and he has been spitting up some of his feedings. They said they wanted to wait to see if his heart function comes back on it's own until Monday, then they would decide whether or not to put in a permanent pacemaker. As for the feeding issue, the are going to give him a less amount of formula , but more often. Hopefully he will tolerate this better.
He is awake alot this morning, even though highly 'sedated'. He looks so cute, looking around and hangin' out! One of the nurses that was helping with him yesterday said that he must be made of steel! She called him Superman because even with all that they have him medicated with, he still finds a way to be awake!
It has been hard lately being patient. I keep thinking that this is never going to end! I have a picture hanging up behind Gavin's bed that says: "Have faith in all things beautiful; the sun when it is hidden, the spring when it is gone." It helps me to think that our 'sun' is just hidden for now, but that it will return again! When I first read this I thought about God being my beautiful thing that the quote talks about. We can't see him, but we have faith that he is there! He may be hidden from our eyes, but He has given us the faith to get through, knowing that He is in control and will always take care of those who love Him! So, knowing this helps when I can't always see that the 'spring' will return again someday! What a blessing!
Love, Alicia
Wednesday, February 21, 2007
Gavin is having an uneventful day today. Which isn't half bad! The down side, he isn't really making any progress. His lungs are looking a little better, but he's still needing the pacemaker for his heart to pump normally. He did have a couple fun things happen today. His nurse moved him into a crib bed, so now he looks more cozy! He also had someone come to play him some music on a harp! It's a service the hospital offers for relaxation an pain management. I think this is part of the reason Gavin is not progressing! He likes it here too much! They take good care of him, it's quiet, it's too cold outside.....I'm trying to talk him into getting better to go home. I told him we'd offer the same services and much more! He's not ready to buy into it yet.
I will be headed home tomorrow arternoon. We have parent-teacher conferences and I need some time home too! I'll probably be home for the weekend. Have a great day!
Love, Alicia
I will be headed home tomorrow arternoon. We have parent-teacher conferences and I need some time home too! I'll probably be home for the weekend. Have a great day!
Love, Alicia
Tuesday, February 20, 2007
Gavin's lungs are clearing up, but they still have a ways to go. He might have his chest tube removed tomorrow since it's not draining much anymore. He is still on the pacemaker. They did an echocardiogram today to measure his heart function and see if the mitral valve's leak is the same as it was the day of surgery.
I spoke with the social worker today. I told her we didn't want to be here anymore! She said she was going to speak with Gavin's medical team to find out the plan. I told her that if the surgeries are done and we are just here waiting for Gavin to get off the vent, we would rather have him transfered to a hospital in Grand Rapids. The boys seem to be having a hard time lately and I know Joel and I are tired of our arrangement! Hopefully we can get a plan going.
As you can probably tell, I'm a little tired of this the last couple of days! I've been feeling anxious and worrying a little. Though, reading my inspirational thought book and bible helped my outlook a lot this afternoon! It talked about how worrying is irrelevant. When was the last time worrying changed anything? It only shows distrust in God's plan. I have to trust in Him alone! I know this, but sometimes I let my focus wander. Reading these words today helped me actually breathe better! Thankfully! We only need one of our family members on a ventilator!! :)
Thanks for your continued prayers!!!
Love, Alicia
I spoke with the social worker today. I told her we didn't want to be here anymore! She said she was going to speak with Gavin's medical team to find out the plan. I told her that if the surgeries are done and we are just here waiting for Gavin to get off the vent, we would rather have him transfered to a hospital in Grand Rapids. The boys seem to be having a hard time lately and I know Joel and I are tired of our arrangement! Hopefully we can get a plan going.
As you can probably tell, I'm a little tired of this the last couple of days! I've been feeling anxious and worrying a little. Though, reading my inspirational thought book and bible helped my outlook a lot this afternoon! It talked about how worrying is irrelevant. When was the last time worrying changed anything? It only shows distrust in God's plan. I have to trust in Him alone! I know this, but sometimes I let my focus wander. Reading these words today helped me actually breathe better! Thankfully! We only need one of our family members on a ventilator!! :)
Thanks for your continued prayers!!!
Love, Alicia
Monday, February 19, 2007
Don't you just love little baby feet?! They are my favorite part of a baby! Today I came in to see Gavin and his little piggies, as I call them, were sticking out from under his blanket! I just stared at them and held them for the longest time. It's funny too, they have him sedated enough to stay sleeping mostly, but those feet still find a way to wiggle about! It's good for my soul!
The cardiologist today said there are two main concerns for Gavin. One, that he needs to get fluid off from his lungs and body so that his heart and lungs can work properly. Two, that his heart will be able to beat in a normal rhythm without the pacemaker. It could be a slow recovery, but it's up to his little body. He has been through so much already, so it could take some time yet. Please pray that these issues could be cleared up soon! We can't wait to have him home and be together normally as a family! Plus, it feels like we are missing so much of his life! He will struggle with progressing throughout life since he has Down Syndrome, but having him here for so long is only delaying things we can do to help him develop.
I know once we get him home he will only flourish with all the activity that goes on in our house! He'll have lots of role models (not always good ones ), but he's going to want to keep up I'm sure!
Your messages are true blessings to us! When feeling down, at times, they are very uplifting and inspirational! Thankyou! You are wonderful gifts from God!
Love, Alicia
The cardiologist today said there are two main concerns for Gavin. One, that he needs to get fluid off from his lungs and body so that his heart and lungs can work properly. Two, that his heart will be able to beat in a normal rhythm without the pacemaker. It could be a slow recovery, but it's up to his little body. He has been through so much already, so it could take some time yet. Please pray that these issues could be cleared up soon! We can't wait to have him home and be together normally as a family! Plus, it feels like we are missing so much of his life! He will struggle with progressing throughout life since he has Down Syndrome, but having him here for so long is only delaying things we can do to help him develop.
I know once we get him home he will only flourish with all the activity that goes on in our house! He'll have lots of role models (not always good ones ), but he's going to want to keep up I'm sure!
Your messages are true blessings to us! When feeling down, at times, they are very uplifting and inspirational! Thankyou! You are wonderful gifts from God!
Love, Alicia
Sunday, February 18, 2007
Gavin is still being kept asleep today. He is hanging in there, but having a few issues. They were able to take out the chest tube that was draining blood and fluids off from his heart area, but then they had to put in a chest tube in his lungs to drain extra fluid that had built up in them. He has been on a pacemaker since surgery, which is common, but when they take him off he is only having a heart rate of 40-50 beats per minute.(normal for a baby should be around 120-140.) One of the doctors today said that 10%-20% have to have a permanent pacemaker put in their heart. The longer someone needs to have it on the more likely he would need one permanetly. There is still time, but it's discouraging hearing this because we don't want to add anymore procedures for Gavin to have to go through and add to our stay! So, please pray that Gavin will be able to get off the pacemaker in the next couple of days and that his heart can recover well from the trauma it endured!
The guys just made it home safely. We had a different kind of weekend 'together', because Caleb wasn't feeling well. Joel or I pretty much stayed with him at the hotel, while the other was at the hospital. So, I'm more sad to see them go since we didn't get to spend much time together. I'm thankful they made it home safely and that they were able to come though!
We continue to feel the love and support that's headed our way! We are very blessed with so many people in our lives that are praying for us daily! We thank you and above all God for this!
Love, Alicia
The guys just made it home safely. We had a different kind of weekend 'together', because Caleb wasn't feeling well. Joel or I pretty much stayed with him at the hotel, while the other was at the hospital. So, I'm more sad to see them go since we didn't get to spend much time together. I'm thankful they made it home safely and that they were able to come though!
We continue to feel the love and support that's headed our way! We are very blessed with so many people in our lives that are praying for us daily! We thank you and above all God for this!
Love, Alicia
Saturday, February 17, 2007
Gavin is having a "day of rest" today. They have him very sedated so that he can just relax and heal. As usual, it is taking a lot to keep him down! Even after surgery he's not going down without a fight! They had to max him out on his medications to get him to sleep enough for their liking! Oh Boy! We can't wait to have the opportunity to chase that little guy around! But, as I've said, we might have our hands full!
He had some issues with pretty low blood pressure yesterday evening and high left atrium pressures, but they seem to be under control for now. Dr. Bove came in to see him this morning and he said he's really pleased with how the surgery worked out and how he's doing. Thank you Lord!!! We feel very blessed!!
Have a great weekend! Thankyou for your prayers, messages and support!
Love, Alicia
He had some issues with pretty low blood pressure yesterday evening and high left atrium pressures, but they seem to be under control for now. Dr. Bove came in to see him this morning and he said he's really pleased with how the surgery worked out and how he's doing. Thank you Lord!!! We feel very blessed!!
Have a great weekend! Thankyou for your prayers, messages and support!
Love, Alicia
Friday, February 16, 2007
Gavin went back for surgery at 7:30 this morning and he's already done! I just spoke with Dr. Bove and he is very pleased with how things went! During the original surgery he wasn't able to close a cleft in Gavin's heart because the left ventrical was too small and couldn't handle doing all the 'work' of pumping the blood. This time around the ventrical had grown and Dr. Bove was able to do what he had wanted to do during the first surgery. He said Gavin was looking very stable and that the echo showed a minimal leak - this is great news! The one thing he is concerned about is the healing process this time. The tissues in Gavin's heart are going to have a harder time healing due to previous surgery just 4 weeks ago, having additional swelling in them and all that his body has endured since then. If anything were to happen to the tissues (the sutures ripping out), it would most likely happen in the first few days to a week. So, they will be watching for this. All-in-all it is encouraging news and we are thankful!
I was praying for a miracle today and so far the prayer has been answered. Coincidently(or not?!), I was reading my daily inspirational thought book this morning and it talked about miracles. It talked about how normal miracles are each and every day. We are surrounded by them! We just forget how miraculous they are; the ocean, the sunset, birth, life and even death. What a wonderful creation God has given us! It reminded me of something Jacob said as a 3 year old and now I will share it with you. We were playing at the playground one evening and the sun began to set, the sky was gorgeous! The colors were pink and purple, beautiful! All of a sudden, Jacob looked up at the sky and started clapping his hands and cheering for God! He yelled out, "Yea God!" What an inspirational sight, the huge faith and excitement of a child knowing it was God Who did this miracle and Who shared it with us! Jacob said "God is painting a picture in the sky." How right he was! God shows us His miracles every day and we don't even have to pray for them! I have had the opportunity to sit back and relax these past few months and am thankful to have the time to actually see the little miracles God gives us each day! I hope that all of you find time today in the business of our world to stop and see the miracles God has given you today. See them with the eyes of a 3 year old!
Well, they said that I should be able to go back to see Gavin around noon, so I'll 'talk' with you later. Thankyou so much for your increased prayers today and always! We appreciate you all!
Love, Alicia
I was praying for a miracle today and so far the prayer has been answered. Coincidently(or not?!), I was reading my daily inspirational thought book this morning and it talked about miracles. It talked about how normal miracles are each and every day. We are surrounded by them! We just forget how miraculous they are; the ocean, the sunset, birth, life and even death. What a wonderful creation God has given us! It reminded me of something Jacob said as a 3 year old and now I will share it with you. We were playing at the playground one evening and the sun began to set, the sky was gorgeous! The colors were pink and purple, beautiful! All of a sudden, Jacob looked up at the sky and started clapping his hands and cheering for God! He yelled out, "Yea God!" What an inspirational sight, the huge faith and excitement of a child knowing it was God Who did this miracle and Who shared it with us! Jacob said "God is painting a picture in the sky." How right he was! God shows us His miracles every day and we don't even have to pray for them! I have had the opportunity to sit back and relax these past few months and am thankful to have the time to actually see the little miracles God gives us each day! I hope that all of you find time today in the business of our world to stop and see the miracles God has given you today. See them with the eyes of a 3 year old!
Well, they said that I should be able to go back to see Gavin around noon, so I'll 'talk' with you later. Thankyou so much for your increased prayers today and always! We appreciate you all!
Love, Alicia
Thursday, February 15, 2007
I made it back safely! It was great to see Gavin again! He is doing well. Surgery is on for tomorrow, to begin either around 7:00a.m. or 11:00a.m. I should know for sure later on today.
Gavin moved to another bed while I was away. For those of you who have been here, he is still in the same room, but on the other side of the room. At first it felt weird, but we are finding it to be a cozy spot! Hopefully he'll be placed in the same spot after his surgery.
Thanks for the wonderful messages and inspiration! They truly get us through the day! What loving and positive people God has placed in our lives! We are blessed!
Please continue to pray that Gavin's surgery goes well and for traveling mercies for those making the trip here this weekend! We'll update you as soon as we know how the surgery went.
Love to all, Alicia
Gavin moved to another bed while I was away. For those of you who have been here, he is still in the same room, but on the other side of the room. At first it felt weird, but we are finding it to be a cozy spot! Hopefully he'll be placed in the same spot after his surgery.
Thanks for the wonderful messages and inspiration! They truly get us through the day! What loving and positive people God has placed in our lives! We are blessed!
Please continue to pray that Gavin's surgery goes well and for traveling mercies for those making the trip here this weekend! We'll update you as soon as we know how the surgery went.
Love to all, Alicia
Wednesday, February 14, 2007
Well, you got me crying again! Thanks for the messages and the words of the song! I'm quite emotional today. I don't want to have to go back to Ann Arbor and leave the boys. I am looking forward to seeing Gavin though. I will be leaving in a couple of hours.:( But, it is well with my soul!:)
Gavin has been hangin' in there while I've been away. He is high on bicarbonate (something to do with ph balance in his metabolic system.) and they are giving him replacements for this. He is also still running a fever at times. More cultures where sent out to see if there is infection, but this has been done numerous times and nothing so far. As far as the surgery is concerned; they are still planning for Friday. The surgery will be to work on his mitral valve. Right now there is too big of a leak, which causes lower oxygenated blood volume to the body. The problem with doing it now is that Gavin's mitral valve is small, deformed and "tissue paper thin." Hopefully Dr. Bove will be able to do enough to get him off the vent and home, but the prospect of additional surgery down the road is most definate. Gavin might need a valve replacement when he and the valve opening are bigger. Right now an artificial valve wouldn't fit in the opening because his heart is small and especially the left side. I think I have summed it all up, hopefully correctly. So, BIG prayers on Friday for Dr. Bove and his team! Also, for Gavin's strength! Make that mine and Joel's too! I'll be there 'alone' and Joel will be working and traveling later in the afternoon. We do not know what time surgery will be yet.
Thankyou for your continued prayers and support!
Love, Alicia
Gavin has been hangin' in there while I've been away. He is high on bicarbonate (something to do with ph balance in his metabolic system.) and they are giving him replacements for this. He is also still running a fever at times. More cultures where sent out to see if there is infection, but this has been done numerous times and nothing so far. As far as the surgery is concerned; they are still planning for Friday. The surgery will be to work on his mitral valve. Right now there is too big of a leak, which causes lower oxygenated blood volume to the body. The problem with doing it now is that Gavin's mitral valve is small, deformed and "tissue paper thin." Hopefully Dr. Bove will be able to do enough to get him off the vent and home, but the prospect of additional surgery down the road is most definate. Gavin might need a valve replacement when he and the valve opening are bigger. Right now an artificial valve wouldn't fit in the opening because his heart is small and especially the left side. I think I have summed it all up, hopefully correctly. So, BIG prayers on Friday for Dr. Bove and his team! Also, for Gavin's strength! Make that mine and Joel's too! I'll be there 'alone' and Joel will be working and traveling later in the afternoon. We do not know what time surgery will be yet.
Thankyou for your continued prayers and support!
Love, Alicia
Tuesday, February 13, 2007
I woke up feeling quite sad today. I feel bad not being there for Gavin. He is so defenseless. I know he is doing fine, especially since our favorite nurse has been there taking care of him a lot, but I wish I could be in two places at once! It has been good being home with Joel and the boys, they seem glad to have me here too. I've been receiving lots of kisses and hugs! It's nice doing the normal things, like sending the boys off to school, doing homework, etc. I've been keeping in contact with Gavin's nurses and he has been doing fairly well. Some issues with low blood pressure and having fevers, but otherwise good. They are preparing him for surgery on Friday, giving him extra blood, etc.
His nurse (our favorite) even called us this evening to fill us in and said she'd be taking care of him the day of surgery. We are thankful for this!
It was wonderful being able to goto our church Sunday! We sang the song "When peace, like a river." It pretty much sums up the peace we have been given by God throughout this time. It talks about how though we may face "trials and sorrows" in our lives God gives us "peace, like a river" and that we are able to feel "well with our soul." I had a hard time singing it all without crying because I was overcome with emotion and thanks for this feeling of peace and love! What a blessing!
Please continue to pray for Gavin and his medical team! We will pray that all of you will be overcome with God's peace in your life, as we are!
Love, The Alicia
His nurse (our favorite) even called us this evening to fill us in and said she'd be taking care of him the day of surgery. We are thankful for this!
It was wonderful being able to goto our church Sunday! We sang the song "When peace, like a river." It pretty much sums up the peace we have been given by God throughout this time. It talks about how though we may face "trials and sorrows" in our lives God gives us "peace, like a river" and that we are able to feel "well with our soul." I had a hard time singing it all without crying because I was overcome with emotion and thanks for this feeling of peace and love! What a blessing!
Please continue to pray for Gavin and his medical team! We will pray that all of you will be overcome with God's peace in your life, as we are!
Love, The Alicia
Saturday, February 10, 2007
I made it home! It sure was hard to leave Gavin, but wonderful to be home again and to see the guys! It's been a month since I've been home and it felt weird driving up the driveway! I spent the first couple of hours cleaning and picking up! I think the house has missed me too! Joel and the Grandmas have done a great job, but it's that 'control thing' making it's way back! So, after I got that out of my system, we were able to have some fun!
The boys had made me some welcome home pictures! That was nice to come home to! Gavin was having a good day so far when I left. We had a 'talk' before I left and he promised to be good! I left a note to the staff above his bed. It said "My mommy will be gone for a few days. Please take extra good care of me. I will need lots of love and attention! Mommy Thanks you! Love, Gavin." I know he will be taken care of, but it made me feel better leaving them a reminder!
Have a great weekend! I plan on it with my boys! God Bless You All!
Love, Alicia
The boys had made me some welcome home pictures! That was nice to come home to! Gavin was having a good day so far when I left. We had a 'talk' before I left and he promised to be good! I left a note to the staff above his bed. It said "My mommy will be gone for a few days. Please take extra good care of me. I will need lots of love and attention! Mommy Thanks you! Love, Gavin." I know he will be taken care of, but it made me feel better leaving them a reminder!
Have a great weekend! I plan on it with my boys! God Bless You All!
Love, Alicia
Friday, February 9, 2007
Another boring day! Yea! No more excitement so far! I am planning on heading home Saturday afternoon, so I'm sure that I'll find plenty of excitement there! Three crazy boys brings about quite the excitement! I'm looking forward to it though!
Gavin is having a good day. He's behaving himself and resting comfortably. Yesterday evening he was kind of fussy and that was hard to watch, since I couldn't pick him up to comfort him!:( His nurse, Missy, put him in a bouncy seat and he decided that he liked that! He looked so cute sitting up in it! I'm sure it felt wonderful getting off his back! He did have an episode of low blood pressure during the night and was given additional fluids and put back on Dopamine, a blood pressure medicine. He recovered from it fine and has been doing well since. The plan is to still have the surgery next Friday. We pray this one will get him home soon!
I hope you are having a wonderful day! I'm rejoicing in my "boring" day! God is good! Love and miss you! Gavin sends his too!
Love, Alicia
Gavin is having a good day. He's behaving himself and resting comfortably. Yesterday evening he was kind of fussy and that was hard to watch, since I couldn't pick him up to comfort him!:( His nurse, Missy, put him in a bouncy seat and he decided that he liked that! He looked so cute sitting up in it! I'm sure it felt wonderful getting off his back! He did have an episode of low blood pressure during the night and was given additional fluids and put back on Dopamine, a blood pressure medicine. He recovered from it fine and has been doing well since. The plan is to still have the surgery next Friday. We pray this one will get him home soon!
I hope you are having a wonderful day! I'm rejoicing in my "boring" day! God is good! Love and miss you! Gavin sends his too!
Love, Alicia
Thursday, February 8, 2007
Any control freaks out there? You are reading an update from one now. Well, should I say a former one? I have always been one to try to hold on to control in many situations. Crazy huh?! I know Who is really in control, but I still had to hold on to just a little bit! These past few months have been a blessing for me in many ways. For one, I now know I am definately not in control! God has been trying to tell me this for quite awhile, but it's sinking in finally! I feel so comforted and relaxed with my present situation knowing God has it under control. He has a plan and it will be fulfilled no matter how hard I try to control it. Wow! What a relief! So, for all you control freaks out there: Just let go and join the comfort I have found!
Back to yesterday's update, I was misinformed about the Staph infection maybe causing what happened on Tuesday. I spoke with a cardiologist yesterday evening and they believe it was the fault of Gavin's mitral valve having too big of a leak. They knew he had the leak and that it would require surgery in the future, but thought he could get by until he grew some more. Gavin is showing them that this might not be the case. They do not feel comfortable sending him home with this problem if this episode could happen again. I totally agree! So, now the plan is to do surgery next Friday if nothing else shows up to what could have caused Gavin to have such an episode. We are still waiting to see if anything else grows on the cultures they have taken.
Today Gavin is doing well. He has been taken off further medication and the ventilator settings have been decreased. He is handling the changes well thus far.
I just want to thank all of you again for your support! I see so many patients come and go since Gavin shares a room with three others. It can be depressing for me to see them go so quickly when we've been here so long. But then I think about how much love, support and prayers we are receiving from everyone and think; maybe others aren't so fortunate to have this blessing. God has blessed us with His love and promises, along with all of you! He knows we can handle being here because of this! So, Thankyou! Thankyou! Thankyou!
I am thinking of coming home this weekend for a few days. I know that Gavin will be taken well care of and our other boys probably need some time with me too. I know it will be good for me too. So, maybe I'll see some of you soon!
Love, Alicia
Back to yesterday's update, I was misinformed about the Staph infection maybe causing what happened on Tuesday. I spoke with a cardiologist yesterday evening and they believe it was the fault of Gavin's mitral valve having too big of a leak. They knew he had the leak and that it would require surgery in the future, but thought he could get by until he grew some more. Gavin is showing them that this might not be the case. They do not feel comfortable sending him home with this problem if this episode could happen again. I totally agree! So, now the plan is to do surgery next Friday if nothing else shows up to what could have caused Gavin to have such an episode. We are still waiting to see if anything else grows on the cultures they have taken.
Today Gavin is doing well. He has been taken off further medication and the ventilator settings have been decreased. He is handling the changes well thus far.
I just want to thank all of you again for your support! I see so many patients come and go since Gavin shares a room with three others. It can be depressing for me to see them go so quickly when we've been here so long. But then I think about how much love, support and prayers we are receiving from everyone and think; maybe others aren't so fortunate to have this blessing. God has blessed us with His love and promises, along with all of you! He knows we can handle being here because of this! So, Thankyou! Thankyou! Thankyou!
I am thinking of coming home this weekend for a few days. I know that Gavin will be taken well care of and our other boys probably need some time with me too. I know it will be good for me too. So, maybe I'll see some of you soon!
Love, Alicia
Wednesday, February 7, 2007
Did you miss me yesterday? I missed 'talking' to you and reading your messages. I will make up for not updating you though with this one! It was quite the day yesterday! Gavin wanted to make sure the staff had an opportunity to practice their skills! Practice they got! He started the day off doing very well, but then his oxygen level starting going down, then his blood pressure, then his heart rate! His heart wasn't beating properly and they hooked him up to a pacemaker, gave him heart & blood pressure medicines and increased the vent settings. During this time it looked like the 'typical' scene on T.V. when everyone comes running and shouting orders. Yes, it was scary. It did give me more confidence in the staff. They did a great job: stayed calm, knew what to do, worked well with each other and made sure I was O.K. too!
I was doing fine. God made sure I had the support that I needed. Pastor Freswick had just stopped by, on his way to Canada, within the hour before this all happened! What a gracious God we have! He knew what I would be faced with that day and provided for me during that time! I am continually amazed by our AWESOME GOD! He has supplied our family and Gavin with all that we have needed during this difficult time! I know that we are never truly alone, God is always there, but it sure was nice to have a friend there with me!
Gavin is stable today. They had him 'paralyzed' through the night and on additional medical support, but they are weaning him off as the day goes on. Poor little guy! I hate to see him go through so much! It looks like this might have been caused by a Staph infection in his lungs. They are still looking into what caused it, but this bacteria (Staph) is growing on the culture they took from his lung secretions. So, he has been started on antibiotics for this.
My night brought about more excitement back at the hotel! I was awakened to the fire alarm going off! So, along with everyone else, headed down the stairs to find a water main leak that was flooding the lobby! It set the fire alarm off. They weren't sure if everyone could stay the night because the smoke alarm system might not be working correctly after the water problem. So, we were awake for some time, but OK'd to go back to bed. Whew! What a day! I'm hoping for some boring days after yesterday!
Oh, by the way, I did get to hold Gavin on Sunday! It was wonderful! Hope you all have boring days ahead too! I'm thankful for all of you and especially for God's love! Have a great day!
Love, Alicia
I was doing fine. God made sure I had the support that I needed. Pastor Freswick had just stopped by, on his way to Canada, within the hour before this all happened! What a gracious God we have! He knew what I would be faced with that day and provided for me during that time! I am continually amazed by our AWESOME GOD! He has supplied our family and Gavin with all that we have needed during this difficult time! I know that we are never truly alone, God is always there, but it sure was nice to have a friend there with me!
Gavin is stable today. They had him 'paralyzed' through the night and on additional medical support, but they are weaning him off as the day goes on. Poor little guy! I hate to see him go through so much! It looks like this might have been caused by a Staph infection in his lungs. They are still looking into what caused it, but this bacteria (Staph) is growing on the culture they took from his lung secretions. So, he has been started on antibiotics for this.
My night brought about more excitement back at the hotel! I was awakened to the fire alarm going off! So, along with everyone else, headed down the stairs to find a water main leak that was flooding the lobby! It set the fire alarm off. They weren't sure if everyone could stay the night because the smoke alarm system might not be working correctly after the water problem. So, we were awake for some time, but OK'd to go back to bed. Whew! What a day! I'm hoping for some boring days after yesterday!
Oh, by the way, I did get to hold Gavin on Sunday! It was wonderful! Hope you all have boring days ahead too! I'm thankful for all of you and especially for God's love! Have a great day!
Love, Alicia
Monday, February 5, 2007
Gavin (mostly his valve) is too small to do additional surgery on right now. So, now their plan is to try real hard, but slowly, to get him off the ventilator. They had gone faster in each step before in trying to get it off, which he didn't handle well. We are praying it works this time, or else he will be given a tracheotomy and sent home to grow for another surgery. This sounds very scary to us and everyone, but at least we'd be able to go home. Also, we've been told he would be so much more comfortable and grow faster with this. So, please pray that he can successfully come off the vent this week and have strength to breathe on his own until the next surgery can be done.
Joel and the boys just left this afternoon. We learned that they didn't have school last night and that the roads weren't that great, so I got them for another day! Yea!!! It was good that Joel could be here to talk with a cardiologist today. Usually they don't come around on the weekends and Joel had some questions and was thankful to be able to talk with the doctor.
Still freezing here, but really no snow. I hope it clears up in G.R. soon for the rest of you! Thanks for your prayers! Have a great day!
Love, Alicia
Joel and the boys just left this afternoon. We learned that they didn't have school last night and that the roads weren't that great, so I got them for another day! Yea!!! It was good that Joel could be here to talk with a cardiologist today. Usually they don't come around on the weekends and Joel had some questions and was thankful to be able to talk with the doctor.
Still freezing here, but really no snow. I hope it clears up in G.R. soon for the rest of you! Thanks for your prayers! Have a great day!
Love, Alicia
Sunday, February 4, 2007
Gavin is looking really good today! He is awake quite a lot today, but staying happy, peaceful and comfortable. He usually gets agitated if he's awake for long because of the vent tube down his throat, which is why they have to sedate him most of the time. Today he's just hangin' out and accepting the tube I guess. It's really nice to see him awake and comfortable! It's so hard when you see him agitated and there's nothing you can do!:(
His nurse today is Lisa, she's really good to him! She said if he stays happy, she's going to work on letting me hold him! Yea!!! It's been sooo long! The only problem is that it's kind of like eating a cookie after being good on a diet; one is not enough! But, I'll take it if I can hold the little guy!
The guys haven't left yet. It's hard for me to let them go! Hopefully the roads are good for driving. Say a prayer for safety for them and Grandma & Grandpa (They just left.)
I just want to let you know how much we appreciate your messages! I really want to respond personally to each one, but then I'd be on the computer too long! But, just know we love hearing from you and think of you and your words often! God has really blessed us with such loving, caring and humorous friends & family!
Love ya, Alicia
His nurse today is Lisa, she's really good to him! She said if he stays happy, she's going to work on letting me hold him! Yea!!! It's been sooo long! The only problem is that it's kind of like eating a cookie after being good on a diet; one is not enough! But, I'll take it if I can hold the little guy!
The guys haven't left yet. It's hard for me to let them go! Hopefully the roads are good for driving. Say a prayer for safety for them and Grandma & Grandpa (They just left.)
I just want to let you know how much we appreciate your messages! I really want to respond personally to each one, but then I'd be on the computer too long! But, just know we love hearing from you and think of you and your words often! God has really blessed us with such loving, caring and humorous friends & family!
Love ya, Alicia
Gavin is looking really good today! He is awake quite a lot today, but staying happy, peaceful and comfortable. He usually gets agitated if he's awake for long because of the vent tube down his throat, which is why they have to sedate him most of the time. Today he's just hangin' out and accepting the tube I guess. It's really nice to see him awake and comfortable! It's so hard when you see him agitated and there's nothing you can do!:(
His nurse today is Lisa, she's really good to him! She said if he stays happy, she's going to work on letting me hold him! Yea!!! It's been sooo long! The only problem is that it's kind of like eating a cookie after being good on a diet; one is not enough! But, I'll take it if I can hold the little guy!
The guys haven't left yet. It's hard for me to let them go! Hopefully the roads are good for driving. Say a prayer for safety for them and Grandma & Grandpa (They just left.)
I just want to let you know how much we appreciate your messages! I really want to respond personally to each one, but then I'd be on the computer too long! But, just know we love hearing from you and think of you and your words often! God has really blessed us with such loving, caring and humorous friends & family!
Love ya, Alicia
His nurse today is Lisa, she's really good to him! She said if he stays happy, she's going to work on letting me hold him! Yea!!! It's been sooo long! The only problem is that it's kind of like eating a cookie after being good on a diet; one is not enough! But, I'll take it if I can hold the little guy!
The guys haven't left yet. It's hard for me to let them go! Hopefully the roads are good for driving. Say a prayer for safety for them and Grandma & Grandpa (They just left.)
I just want to let you know how much we appreciate your messages! I really want to respond personally to each one, but then I'd be on the computer too long! But, just know we love hearing from you and think of you and your words often! God has really blessed us with such loving, caring and humorous friends & family!
Love ya, Alicia
Saturday, February 3, 2007
Another positive to being stuck here in Ann Arbor: No Snow! For those of you in Grand Rapids today, you'll understand! Hope you are all enjoying the beauty of it and are able to have a relaxing day while stuck inside!
Our family is enjoying our time together this weekend! The boys and I went to the mall to walk around while Joel and Grandma and Grandpa visited with Gavin.
Gavin is having another good day. He is going down on the ventilator and is looking comfortable and happy. We don't have a definate answer from Dr. Bove about surgery, but the cardiologist says not to count on it. They feel Gavin and his valve need to grow further before being able to correct it more. So, the next step would be to try to get him off the vent and see how he does or if he can't breathe well enough on his own then put in a tracheotomy and go home on a vent to grow! We are anxious waiting for the next step, but will rely on God and know He will help us through!
Have a great weekend! Thanks for the messages! Thanks especially for your prayers, love and support!
Love, Alicia
Our family is enjoying our time together this weekend! The boys and I went to the mall to walk around while Joel and Grandma and Grandpa visited with Gavin.
Gavin is having another good day. He is going down on the ventilator and is looking comfortable and happy. We don't have a definate answer from Dr. Bove about surgery, but the cardiologist says not to count on it. They feel Gavin and his valve need to grow further before being able to correct it more. So, the next step would be to try to get him off the vent and see how he does or if he can't breathe well enough on his own then put in a tracheotomy and go home on a vent to grow! We are anxious waiting for the next step, but will rely on God and know He will help us through!
Have a great weekend! Thanks for the messages! Thanks especially for your prayers, love and support!
Love, Alicia
Friday, February 2, 2007
I was given some good medicine today! It has lifted my spirits and Gavin's too I think. The medicine is called "Caleb". He came today with Grandma O. The joyful sounds of a three year old and the bounding energy is music to our ears! Ask me how I feel about the noise in a few days, but today it sounds wonderful! He was "missing Mama", so they came a day earlier than the other guys.
Still no news from Dr. Bove. He's a busy guy! So, we're still waiting.....He said he would look at Gavin's echo today and make a decision hopefully.
Gavin is doing really well today, being kept very comfortable. He's been a good boy too, no scaring his mom or the nurses with getting mad which usually brings his oxygen level down! So, we are all having a relaxing day.
Thankyou for your continued prayers and messages! We really appreciate them! God is Good!
Love ya, Alicia
Still no news from Dr. Bove. He's a busy guy! So, we're still waiting.....He said he would look at Gavin's echo today and make a decision hopefully.
Gavin is doing really well today, being kept very comfortable. He's been a good boy too, no scaring his mom or the nurses with getting mad which usually brings his oxygen level down! So, we are all having a relaxing day.
Thankyou for your continued prayers and messages! We really appreciate them! God is Good!
Love ya, Alicia
Thursday, February 1, 2007
I read something that might interest you. It has only encouraged my bad habits, but made me feel better about them! Joel might not appreciate this info, but...I think he'll still love me!:) Anyway, it said that "super-neat people must constantly work at staying in control, but when you're kind of messy you can deal with things that unexpectantly happen or go wrong more easily." So, Joel, maybe it's good that my side of the room isn't up to par and the kid's papers and mail on the counters (that drive us nuts) are a good thing? You're probably not smiling, but maybe it's helped me to handle this a little bit better. Ultimately, I know it's because of God's grace and the support of so many, but still a thought?!
Gavin is doing well today. No big changes and no info yet about additional surgery. But, he seems comfortable and pain free. Hopefully we'll know more this afternoon. I'll let you know.
Thankyou ALL for so much!!! God bless!
Love, Alicia
Gavin is doing well today. No big changes and no info yet about additional surgery. But, he seems comfortable and pain free. Hopefully we'll know more this afternoon. I'll let you know.
Thankyou ALL for so much!!! God bless!
Love, Alicia
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