Good Morning KSG,
For the most part our change of pace in life is going as well as expected. We are back to getting little to no sleep, with a new born on a 3 hour feeding schedule and a toddler that is teething, I think the only thing in our house that is getting sleep is our dog Naboo. I wouldn't trade it for anything, just to have both boys under one roof is an awesome feeling!
Tavyn (and Naboo) are very curious of Kolton. Tavyn somewhat tiptoes up to Kolton and smiles. From time to time he tries to steal Kolton's nook (pacifier). Other times he tries to insert the nook into Kolton's mouth, forcefully mind you. So we are trying to teach Tavyn Gentle Touch. The dog keeps on trying to snuggle, lick, and smell Kolton, I think shes thinks that she has a new puppy!
For the next few weeks Kolton has follow up appointment after follow up appointment. The good thing is that he is not on any machines and he is only on two medications.
On a seperate note, we did the March of Dimes walk this past Sunday despite the rain. Lucky for us they shortened the course due to the storm. We actually debated whether to walk our not due to the weather, but we came to the agreement that we can't let down Kolton, you guys, and Christeen (who put it together). Tavyn did well until the last 10 minutes of the walk, then he screamed because he was soaked from the rain.
Words cannot express how greatful we are to all of you for standing strong next to us through out this journey. We could not have done it without all of you and frankly I wouldn't want to do it without all of you! All of your prayers and positive energy and good will has given us a whole new outlook on life. Not only has Kolton positively impacted our lives but so have all of you. THANK YOU!!!
We will still post for a couple of months to keep all of you posted on Kolton's progress.
All of our Love,
The Thompson Tribe
Thursday, April 30, 2009
Monday, April 27, 2009
Kolton is HOME
Kolton is home!!!! He's in my arm right now and I'm trying not to drip tears on him. Thank you for staying with us through this journey and seeing us home. I will post more and update with photos this evening or tomorrow, but wanted to let everyone know Kolton is home - finally!
Love,TTT
Love,TTT
Sunday April 26th.....Koltons ready to head home!!!
Today is the March of Dimes in which Kolton's Krusaders will be Kruisin 4 miles rain or shine. We are so excited to walk for Kolton and all the other babies and families effected by birth defects.
It looks like Kolton's discharge date will be Monday, April 27th. In one of Kyle's previous posts, he mentioned that at some point all of this feeling like a nanosecond in time. Kolton will have been in the hospital 104 days - that's a really long nanosecond. On Monday before he is discharged, Kolton has to have another eye exam and pass a hearing test. His car seat also has to be inspected and approved for him. We spent Saturday in the hospital as a family to get a glimpse of the new challenges of 2 in diapers at the same time. It was fun and a bit scary, but Tavyn really loved trying to help care for Kolton. He brought him his nuk and patted him when he starting crying. Then he snuggled in the chair with Mommy and baby and then with Daddy and baby like that's just the way it's suppose to be. We thought we were overwhelmed with emotions before, but now tears of complete joy flow freely. What a great big brother Tavyn is already! Kyle and I also took our infant CPR class and are starting to learn about how to care for Kolton. He'll only be on 2 meds when he comes home - one to help him pass fluids and one for reflux. He's eating like a champ and hungry every 2 hours. (I was hoping they'd have him sleeping through the night before discharge or at least let us use that continuous feed at night - LOL.) Kyle and I have been trying to get the house ready as we thought we'd have another couple weeks to prepare, but what a wonderful problem to have. I will be taking some more time off from work and working PT from home as much as possible. This journey would not have been possible without your healing prayers. We will continue to make posts as Kolton continues to heal and grow.
Much love-The Thompson Tribe
It looks like Kolton's discharge date will be Monday, April 27th. In one of Kyle's previous posts, he mentioned that at some point all of this feeling like a nanosecond in time. Kolton will have been in the hospital 104 days - that's a really long nanosecond. On Monday before he is discharged, Kolton has to have another eye exam and pass a hearing test. His car seat also has to be inspected and approved for him. We spent Saturday in the hospital as a family to get a glimpse of the new challenges of 2 in diapers at the same time. It was fun and a bit scary, but Tavyn really loved trying to help care for Kolton. He brought him his nuk and patted him when he starting crying. Then he snuggled in the chair with Mommy and baby and then with Daddy and baby like that's just the way it's suppose to be. We thought we were overwhelmed with emotions before, but now tears of complete joy flow freely. What a great big brother Tavyn is already! Kyle and I also took our infant CPR class and are starting to learn about how to care for Kolton. He'll only be on 2 meds when he comes home - one to help him pass fluids and one for reflux. He's eating like a champ and hungry every 2 hours. (I was hoping they'd have him sleeping through the night before discharge or at least let us use that continuous feed at night - LOL.) Kyle and I have been trying to get the house ready as we thought we'd have another couple weeks to prepare, but what a wonderful problem to have. I will be taking some more time off from work and working PT from home as much as possible. This journey would not have been possible without your healing prayers. We will continue to make posts as Kolton continues to heal and grow.
Much love-The Thompson Tribe
Thursday, April 23, 2009
Update from dad 4-23-09
Good Morning KSG,
We can't thank you enough for your continued prayers and support. It would have been extremely hard getting through this without ALL of you in our lives. Well it has almost been a week since Kolton's surgery and he is doing great. He still continues to not only amaze us but the doctors too.
I wanted to thank all of you who donated to the upcoming March of Dimes walk in honor of Kolton. Christeen has worked hard to put this together and raise money, as of yesterday she met her goal, if you would still like to donate, today is the last day(until next years walk). If this is new information to you here is the link: www.marchforbabies.org/christeen
Gretchen, Tavyn, and myself plan on walking with Christeen and the Kolton Kruisers this Sunday. If you would like to join us we would love to have you. Follow the link to where and when.
On to Kolton, he is back on the 3rd floor in his own room. He has been having occupational therapy stopping by to help him learn to eat on his own. They experimented with several bottles and nipples to see what he prefers, and they found a match. I spoke with one of his Nurse practioners last night and she said as long as he can eat what he is supposed to he can come home as early as this Monday!!! Oh my, we have a lot to do in preparation if that is the case. That is about 3 weeks early! To share with you the connection between MDs, us, and the patients, Kolton's primary Cardiologist was out on vacation last week during the surgery. She would call Gretchen periodically, and call the hospital to check in on Kolton on a daily basis. When she got back into town, the first thing she did was come in to see her Miracle Patient. She should be teaching courses in bedside manner!
Before Kolton comes home the hospital will put us through CPR and first aid classes. We will be going through a lot of education on taking care of a post op cardiac patient, too. They have already instructed us to not allow Kolton around large groups of people, due to the risk of infection and sickness. We plan on having an open house about a month or so after he comes home and we get settled so everyone will have an opportunity to meet the little guy they have been praying for.
That is about it for now, hope to see some of you at the March of Dimes walk this Sunday.
All of our love,
The Thompson Tribe
We can't thank you enough for your continued prayers and support. It would have been extremely hard getting through this without ALL of you in our lives. Well it has almost been a week since Kolton's surgery and he is doing great. He still continues to not only amaze us but the doctors too.
I wanted to thank all of you who donated to the upcoming March of Dimes walk in honor of Kolton. Christeen has worked hard to put this together and raise money, as of yesterday she met her goal, if you would still like to donate, today is the last day(until next years walk). If this is new information to you here is the link: www.marchforbabies.org/christeen
Gretchen, Tavyn, and myself plan on walking with Christeen and the Kolton Kruisers this Sunday. If you would like to join us we would love to have you. Follow the link to where and when.
On to Kolton, he is back on the 3rd floor in his own room. He has been having occupational therapy stopping by to help him learn to eat on his own. They experimented with several bottles and nipples to see what he prefers, and they found a match. I spoke with one of his Nurse practioners last night and she said as long as he can eat what he is supposed to he can come home as early as this Monday!!! Oh my, we have a lot to do in preparation if that is the case. That is about 3 weeks early! To share with you the connection between MDs, us, and the patients, Kolton's primary Cardiologist was out on vacation last week during the surgery. She would call Gretchen periodically, and call the hospital to check in on Kolton on a daily basis. When she got back into town, the first thing she did was come in to see her Miracle Patient. She should be teaching courses in bedside manner!
Before Kolton comes home the hospital will put us through CPR and first aid classes. We will be going through a lot of education on taking care of a post op cardiac patient, too. They have already instructed us to not allow Kolton around large groups of people, due to the risk of infection and sickness. We plan on having an open house about a month or so after he comes home and we get settled so everyone will have an opportunity to meet the little guy they have been praying for.
That is about it for now, hope to see some of you at the March of Dimes walk this Sunday.
All of our love,
The Thompson Tribe
Monday, April 20, 2009
Update 4-19-09
Thank you for continuing to visit Kolton's site and uplifting & surrounding us in prayer! Kolton continues to do well. The chest tubes (2 large tubes that drain off blood and fluids from the incision) were removed yesterday. Today he is struggling a bit with keeping his blood pressure stable. He is tending to have a little higher pressure than the doctors would like. They will continue to adjust medications to help him keep it more stable. Also, just more recovery time should help. We have to remind ourselves deconstructing and then reconstructing a heart is pretty major to say the least.
Many have asked about when he can come home. We really have no idea. He has to recover from the surgery, keep his blood pressure stable, breathe room air unassisted, and eat without a feeding tube. We have a way to go yet, but we know our little fighter will get it done as fast as he can.
The day of his surgery, Sue and I did some of the waiting on a little grassy patch outside on the hospital grounds. It struck me that in this tough neighborhood there were these 2 large buildings with 100s of miracles happening. Children's is in the top 1% in the nation, yet it is in one of the toughest neighborhoods in Minneapolis. I do not think I will look at hospitals quite the same. Driving by as if it were just another building in the past, but now knowing the profound life saving and life altering events taking place inside will be a constant reminder of God's hands doing work on earth.
After the surgery, I asked Dr. Overman if he was exhausted. He shook his head, smiled and said, "It is invigorating work." And then when I thanked him and hugged him, he said it was a privilege. Thank you to Dr. Overman & Dr. Mogda, the gifted surgeons!
Love-Gretchen
Many have asked about when he can come home. We really have no idea. He has to recover from the surgery, keep his blood pressure stable, breathe room air unassisted, and eat without a feeding tube. We have a way to go yet, but we know our little fighter will get it done as fast as he can.
The day of his surgery, Sue and I did some of the waiting on a little grassy patch outside on the hospital grounds. It struck me that in this tough neighborhood there were these 2 large buildings with 100s of miracles happening. Children's is in the top 1% in the nation, yet it is in one of the toughest neighborhoods in Minneapolis. I do not think I will look at hospitals quite the same. Driving by as if it were just another building in the past, but now knowing the profound life saving and life altering events taking place inside will be a constant reminder of God's hands doing work on earth.
After the surgery, I asked Dr. Overman if he was exhausted. He shook his head, smiled and said, "It is invigorating work." And then when I thanked him and hugged him, he said it was a privilege. Thank you to Dr. Overman & Dr. Mogda, the gifted surgeons!
Love-Gretchen
Saturday, April 18, 2009
day 1 post op
Good Morning KSG,
Kolton had a great night. I think it was the first night in a long time that Gretchen and I had a full night's rest. I just got off the phone with Gretchen and Kolton's nurse and he is doing great. His color is coming back, due to the proper amount of oxygen in his system, in other words he looks pink. The amount of post op drainage around his heart is minimal. He is slowly being weened off of his dopamine. For the first time every yesterday we got to see his blood/oxygen saturation levels at 100%, WOW!!! For obvious reasons the 48 hours after his surgery are the most crucial.
For both Gretchen and I yesterday was an extremely hard day that words cannot explain. Thankfully we had our surrogate Grandma Sue there with us taking care of all of our needs. Our Pastor stopped by to pray with us. Kolton's primary nurse Diana came by and hung out with us for a couple of hours, too. One by one the cardiologist team stopped in to check in on us and tell how amazing Kolton is. One of the greatest moments yesterday was when we met with the surgeon after the surgery and Gretchen commented that he must be mentally exhausted after a long difficult surgery like that. He replied (paraphrased): "It was an honor to work on a case like Kolton's, due to his strength." He then gave Gretchen and I a long embrace and went back in to take care of our little guy.
Well today is a new day and thanks be to God for it. I will be going i to be at Kolton's bedside and Gretchen will be coming to be with Tavyn. I will attempt to get some new pictures over the next couple of days.
Thank all of you for your continued faith, prayers, and lifting our family up.
All of our love,The Thompson Tribe
Kolton had a great night. I think it was the first night in a long time that Gretchen and I had a full night's rest. I just got off the phone with Gretchen and Kolton's nurse and he is doing great. His color is coming back, due to the proper amount of oxygen in his system, in other words he looks pink. The amount of post op drainage around his heart is minimal. He is slowly being weened off of his dopamine. For the first time every yesterday we got to see his blood/oxygen saturation levels at 100%, WOW!!! For obvious reasons the 48 hours after his surgery are the most crucial.
For both Gretchen and I yesterday was an extremely hard day that words cannot explain. Thankfully we had our surrogate Grandma Sue there with us taking care of all of our needs. Our Pastor stopped by to pray with us. Kolton's primary nurse Diana came by and hung out with us for a couple of hours, too. One by one the cardiologist team stopped in to check in on us and tell how amazing Kolton is. One of the greatest moments yesterday was when we met with the surgeon after the surgery and Gretchen commented that he must be mentally exhausted after a long difficult surgery like that. He replied (paraphrased): "It was an honor to work on a case like Kolton's, due to his strength." He then gave Gretchen and I a long embrace and went back in to take care of our little guy.
Well today is a new day and thanks be to God for it. I will be going i to be at Kolton's bedside and Gretchen will be coming to be with Tavyn. I will attempt to get some new pictures over the next couple of days.
Thank all of you for your continued faith, prayers, and lifting our family up.
All of our love,The Thompson Tribe
Friday, April 17, 2009
Operation update 4-17-09
Operation Update:
Kolton is still in the OR and will be there for about another hour. We just met with one of the cardiologists, and Kolton is off all of the machines, his heart has succesfully been reconstructed, he is doing a lot better than they anticipated. Once again, Our little miracle boy is surprising everyone.
When we get more info we will let you know.
Keep the prayers coming.
All of our love,the thompson tribe
Kolton is still in the OR and will be there for about another hour. We just met with one of the cardiologists, and Kolton is off all of the machines, his heart has succesfully been reconstructed, he is doing a lot better than they anticipated. Once again, Our little miracle boy is surprising everyone.
When we get more info we will let you know.
Keep the prayers coming.
All of our love,the thompson tribe
Thursday, April 16, 2009
Green light for surgery!
Good Afternoon KSG,
It is time to warm up your hands and start praying. Kolton just received the green light to have his surgery tomorrow, Friday at noon. After he had his echo this morning His cardiologist said the heart looks good and strong and is ready for the surgery. So tonight I will be staying with him all night and at 0700 tomorrow morning he will be wheeled down to the PICU to be preped for surgery. The surgery will take between 4 to 6 hours. We will keep you updated as soon as we can tomorrow.
I wanted to add a link for all of you to see how his heart works and how they will essentially rebuild his heart. When you get to the website, above the picture of the heart are two icons, one for "flash movie" and one for "graphic summary", click on these and they will open another webpage that will pretty much lay it all out for you. So here is the website: http://www.cincinnatichildrens.org/health/heart-encyclopedia/anomalies/transposition.htmWe will be in touch.
All of our Love,
The Thompson Tribe
It is time to warm up your hands and start praying. Kolton just received the green light to have his surgery tomorrow, Friday at noon. After he had his echo this morning His cardiologist said the heart looks good and strong and is ready for the surgery. So tonight I will be staying with him all night and at 0700 tomorrow morning he will be wheeled down to the PICU to be preped for surgery. The surgery will take between 4 to 6 hours. We will keep you updated as soon as we can tomorrow.
I wanted to add a link for all of you to see how his heart works and how they will essentially rebuild his heart. When you get to the website, above the picture of the heart are two icons, one for "flash movie" and one for "graphic summary", click on these and they will open another webpage that will pretty much lay it all out for you. So here is the website: http://www.cincinnatichildrens.org/health/heart-encyclopedia/anomalies/transposition.htmWe will be in touch.
All of our Love,
The Thompson Tribe
Sunday, April 12, 2009
Update from Koltons parents 4-12-09
Good Evening KSG,
Kolton wanted me to be sure to wish his support group a very Happy Easter! He is doing well and likes having his own room at the hospital. He is now only on a nasal cannula and a feeding tube. He does have a low grade fever that showed up today, but they will monitor it closely. He occasionally has bouts of acid reflux from time to time. He has been taking the bottle here and there and he is getting better at it.
Oma & Opa are here to celebrate Easter! What a joy to have the whole family together, even if it is in the hospital. Oma & Opa have successfully spoiled both boys.
Today started with an Easter basket full of books and goodies for Tavyn(it was a combination of all Easter gifts sent to him from other family members). We slept in and went to 9:15am church. The choir and orchestra were absolutely incredible. Pastor Cornils wiped us out with his sermon. He is always delivers the Good News in just the right way. We then all celebrated Easter lunch with our good friends and adopted family George & Sue Hipp and their family. What a feast! The Hipps graciously embraced our family. Again we were able to witness the expanse and goodness of God's family. We then went to the hospital to spend time with Kolton.
Now we are back home and exhausted. We wanted to let you know about a book that one of Kolton's NICU Dr's wrote: "Before Their Time", by Daniel Taylor & Ronald Hoekstra, MD, ISBN: 0-8308-2265-8. A great insight on five families and their premature children. I would like to leave you with a quote from this book:"No child is ever sick alone. When a newborn is at risk over a long period, so are the parents, and the family, and a widening complex of relationships. Also at risk are whole value systems and ways of understanding the world. Sometimes the risks result in growth and deepening and new strength. Other times it leads to disintegration and conflict and collapse. Often it results in both. Long term crisis will weigh you and show where you are wanting. They will reveal where you are strong and where you are weak, both as an individual and in your relationships. You will be surprised by your strength. You will be surprised by your weakness. You will also be surprised by the number of people willing to help."
Good Night and God Bless,
The Thompson Tribe
Kolton wanted me to be sure to wish his support group a very Happy Easter! He is doing well and likes having his own room at the hospital. He is now only on a nasal cannula and a feeding tube. He does have a low grade fever that showed up today, but they will monitor it closely. He occasionally has bouts of acid reflux from time to time. He has been taking the bottle here and there and he is getting better at it.
Oma & Opa are here to celebrate Easter! What a joy to have the whole family together, even if it is in the hospital. Oma & Opa have successfully spoiled both boys.
Today started with an Easter basket full of books and goodies for Tavyn(it was a combination of all Easter gifts sent to him from other family members). We slept in and went to 9:15am church. The choir and orchestra were absolutely incredible. Pastor Cornils wiped us out with his sermon. He is always delivers the Good News in just the right way. We then all celebrated Easter lunch with our good friends and adopted family George & Sue Hipp and their family. What a feast! The Hipps graciously embraced our family. Again we were able to witness the expanse and goodness of God's family. We then went to the hospital to spend time with Kolton.
Now we are back home and exhausted. We wanted to let you know about a book that one of Kolton's NICU Dr's wrote: "Before Their Time", by Daniel Taylor & Ronald Hoekstra, MD, ISBN: 0-8308-2265-8. A great insight on five families and their premature children. I would like to leave you with a quote from this book:"No child is ever sick alone. When a newborn is at risk over a long period, so are the parents, and the family, and a widening complex of relationships. Also at risk are whole value systems and ways of understanding the world. Sometimes the risks result in growth and deepening and new strength. Other times it leads to disintegration and conflict and collapse. Often it results in both. Long term crisis will weigh you and show where you are wanting. They will reveal where you are strong and where you are weak, both as an individual and in your relationships. You will be surprised by your strength. You will be surprised by your weakness. You will also be surprised by the number of people willing to help."
Good Night and God Bless,
The Thompson Tribe
Thursday, April 9, 2009
4/9/09 update...Koltons doing GREAT post op
Good Evening KSG,
Thank all of you for your outstanding continued support!!!
Kolton is doing great! He is an amazing little guy. He has actually surprised the MD's and the staff with how well he is doing. He is pretty much off of everything except for his high flow cannula, feeding tube, and an IV just in case. Tonight he is supposed to be graduating to the 3rd floor... this is a big deal this is where they send you when you are in the homestretch. I spoke with several of his MDs today and some are saying he should be able to have the next surgery within 7 days from now and some are saying as late as 3 weeks. Day by day, we will see! I got to hold him today for the first time since his surgery, it was nice to hold the little strong heart again! I have noticed since he is getting a lot more oxygen in his system he is a lot more alert and active, almost as if he had some espresso. They started to feed him today on mom's milk again, I'm sure he is happy with that. Honestly he has gone above and beyond everyone's expectations!
We added some more pics... one with his new zipper, Enjoy!
Happy Good Friday.
All of our Love,
The Thompson Tribe
Thank all of you for your outstanding continued support!!!
Kolton is doing great! He is an amazing little guy. He has actually surprised the MD's and the staff with how well he is doing. He is pretty much off of everything except for his high flow cannula, feeding tube, and an IV just in case. Tonight he is supposed to be graduating to the 3rd floor... this is a big deal this is where they send you when you are in the homestretch. I spoke with several of his MDs today and some are saying he should be able to have the next surgery within 7 days from now and some are saying as late as 3 weeks. Day by day, we will see! I got to hold him today for the first time since his surgery, it was nice to hold the little strong heart again! I have noticed since he is getting a lot more oxygen in his system he is a lot more alert and active, almost as if he had some espresso. They started to feed him today on mom's milk again, I'm sure he is happy with that. Honestly he has gone above and beyond everyone's expectations!
We added some more pics... one with his new zipper, Enjoy!
Happy Good Friday.
All of our Love,
The Thompson Tribe
Update from Koltons Parents 4-7-09
Good Afternoon KSG,
Thank you for the continued outreach whether it is voice-mail, email, text, caring bridge posts, or stopping by. It helps us more than you would ever know.
We hit the post-op 24 hour mark and Kolton is doing good. I actually saw his saturation level reach 96% today. He is a lot less puffy now. His color looks really good.
If you want to mail him items, you still can mail it to the Hospital, just direct it to PICU-Kolton Thompson. We are back to the scheduling of day to day in figuring out what is the next course of action for him. The nurse did inform me that he should be weened off a majority of all of the Rx's and devices by tomorrow. As the week goes on we should get a little more direction.
Today it was great, I actually ran into one of my old Nurse Practitioners that I called on before with my prior job. It was nice to catch up and share Kolton's story.
Just a reminder, you are more than welcome to share Kolton's story with anyone. Keep the positive energy coming.
All of our Love,
The Thompson Tribe
Thank you for the continued outreach whether it is voice-mail, email, text, caring bridge posts, or stopping by. It helps us more than you would ever know.
We hit the post-op 24 hour mark and Kolton is doing good. I actually saw his saturation level reach 96% today. He is a lot less puffy now. His color looks really good.
If you want to mail him items, you still can mail it to the Hospital, just direct it to PICU-Kolton Thompson. We are back to the scheduling of day to day in figuring out what is the next course of action for him. The nurse did inform me that he should be weened off a majority of all of the Rx's and devices by tomorrow. As the week goes on we should get a little more direction.
Today it was great, I actually ran into one of my old Nurse Practitioners that I called on before with my prior job. It was nice to catch up and share Kolton's story.
Just a reminder, you are more than welcome to share Kolton's story with anyone. Keep the positive energy coming.
All of our Love,
The Thompson Tribe
Monday, April 6, 2009
4-6-09 2:45pm Surgery one Complete!
SURGERY ONE COMPLETE! Kolton has made it through the first surgery. The band was successfully placed. He did not have to go on ECMO, but did have to have a shunt placed between his aorta and pulmonary vessel. The shunt is allowing his blood oxygen levels to remain at approx. 70%. We are waiting for the anesthesia to wear off and we will be able to see him following that. Thank you for filling up God's Inbox with Kolton prayer. We could not get through this without you!
Much love!
The Thompson
Much love!
The Thompson
4-6-09 update from parents...Kolton in surgery now
Dear KSG,
Kolton was transferred to the PICU at 7am this morning. Kyle & I were able to get some cuddle time in before he got his lines placed. Kolton was placed on the ventilator and has lines in his head, wrist, groin, and neck. The neck line is actually sutured in. Our fantastic Pastor Cornils came in and we were able to pray over Kolton. Having that prayer time with Pastor really helped us remember God's hand in this all. And he had the "green book" with him which is very familiar for a Lutheran Pastor's kid.
Then our friend, surogate Grandma, and neighbor stopped by with lunch. And she has taken the day off to be with us as we wait and wait. Another one of God's blessing in this day.
We were just informed that the procedure as officially started and Kolton remains stable.
Keep the prayers coming!!!! Your posts have been so comforting and encouraging!
I do have one correction to an earlier post - the band will be on his pulmonary artery not the vein.
Much love-
The Thompson Tribe
Kolton was transferred to the PICU at 7am this morning. Kyle & I were able to get some cuddle time in before he got his lines placed. Kolton was placed on the ventilator and has lines in his head, wrist, groin, and neck. The neck line is actually sutured in. Our fantastic Pastor Cornils came in and we were able to pray over Kolton. Having that prayer time with Pastor really helped us remember God's hand in this all. And he had the "green book" with him which is very familiar for a Lutheran Pastor's kid.
Then our friend, surogate Grandma, and neighbor stopped by with lunch. And she has taken the day off to be with us as we wait and wait. Another one of God's blessing in this day.
We were just informed that the procedure as officially started and Kolton remains stable.
Keep the prayers coming!!!! Your posts have been so comforting and encouraging!
I do have one correction to an earlier post - the band will be on his pulmonary artery not the vein.
Much love-
The Thompson Tribe
4-5-09 update from mom!
I just returned from the hospital and Kolton looks great! We do have an update to the surgery time. Kolton's surgery is scheduled at 11:45 am (not 7:30am). All else is the same.
Much love- Gretchen
Much love- Gretchen
Sunday, April 5, 2009
Blog update 4-5-09
Dear KSG,
Thank you so much for your continued prayer. This week has been particularly challenging for us. Kolton will be facing his first heart surgery on Monday. The reality of it has been slowly seeping in over this past week. We are either solid as a rock or falling part over the AT&T roll-over minute commercials. We pray for a day to argue with the boys about roll-over minutes.
Kolton's week has been full of pre-op procedures. He had an echocardiogram of his heart and a CT scan of his head. His brain development looks normal for his age. This is a really big win for him. Kolton has also had his blood gases, blood chemistry, platelets, and red blood cell levels tested. He has finally tipped the 6lb mark and weighs in at 6lbs and almost an oz. This extra weight will be very helpful for him post-op.
The surgery itself...is open heart surgery that will take approximately 4-6 hours. It should start around 7:30am tomorrow morning. Kolton will have a band placed on is pulmonary vein. The band will increase the pressure on his left ventricle. It will then take about 10 days for the ventricle to strengthen. Theoretically, the increased pressure from the band should also force additional blood and oxygen across the hole in his heart. This should keep his blood saturation levels of oxygen at an acceptable level. However, it is also very likely that he will destabilize as a result of the band. If this happens, he will be placed on ECMO (life support). While in the OR, after the band is placed, the surgeons will just monitor him. They will test his saturation levels to determine if ECMO is needed or not. If it is not needed, he gets closed-up and sent to recovery. If it is needed, he will be placed on ECMO and then sent to recovery. ECMO adds increased risks for Kolton so we pray he will not need it.
Once the ventricle has strengthened, he will be ready for the switch operation. This is the surgery where they will actually switch the vessels to their appropriate position. He will then finally be to grow, recover, and learn - the path home. We anticipate brining him home by mid-May.
We know that it has been your prayer that has gotten Kolton and us this far. We just ask for that continued vigor in prayer.
Much love-
Gretchen, Kyle, Tavyn, Kolton & Naboo
Thank you so much for your continued prayer. This week has been particularly challenging for us. Kolton will be facing his first heart surgery on Monday. The reality of it has been slowly seeping in over this past week. We are either solid as a rock or falling part over the AT&T roll-over minute commercials. We pray for a day to argue with the boys about roll-over minutes.
Kolton's week has been full of pre-op procedures. He had an echocardiogram of his heart and a CT scan of his head. His brain development looks normal for his age. This is a really big win for him. Kolton has also had his blood gases, blood chemistry, platelets, and red blood cell levels tested. He has finally tipped the 6lb mark and weighs in at 6lbs and almost an oz. This extra weight will be very helpful for him post-op.
The surgery itself...is open heart surgery that will take approximately 4-6 hours. It should start around 7:30am tomorrow morning. Kolton will have a band placed on is pulmonary vein. The band will increase the pressure on his left ventricle. It will then take about 10 days for the ventricle to strengthen. Theoretically, the increased pressure from the band should also force additional blood and oxygen across the hole in his heart. This should keep his blood saturation levels of oxygen at an acceptable level. However, it is also very likely that he will destabilize as a result of the band. If this happens, he will be placed on ECMO (life support). While in the OR, after the band is placed, the surgeons will just monitor him. They will test his saturation levels to determine if ECMO is needed or not. If it is not needed, he gets closed-up and sent to recovery. If it is needed, he will be placed on ECMO and then sent to recovery. ECMO adds increased risks for Kolton so we pray he will not need it.
Once the ventricle has strengthened, he will be ready for the switch operation. This is the surgery where they will actually switch the vessels to their appropriate position. He will then finally be to grow, recover, and learn - the path home. We anticipate brining him home by mid-May.
We know that it has been your prayer that has gotten Kolton and us this far. We just ask for that continued vigor in prayer.
Much love-
Gretchen, Kyle, Tavyn, Kolton & Naboo
Wednesday, April 1, 2009
Blog from dad!!
Good Morning KSG,
I want to start of by thanking all of you for the continued prayers, support, and reaching out. It is all of you that helps us get through the days and nights. If all of you were not out there, I don't know how we would do it.
I mentioned yesterday in my journal posting of a friend that is walking in the upcoming March of Dimes walk in honor of Kolton (aka Kolton’s Kruisers), I wanted to post her info:
www.marchforbabies.org/christeen
www.koltonthompson.blogspot.com
She is trying to raise $500 and is currently at $200. Any help she could get, we would be greatly appreciative. The walk is April 26, 2009, 400 Kenwood Parkway, Minneapolis, MN 55403Walk Distance: 4 milesRegistration Time: 10:00AMStart Time: 11:00 AMChapter: Greater Twin CitiesPhone #: (952) 835-3033
Thank you for your support of her, the March of Dimes, Kolton, and our family.
One other thing I forgot to mention was my take on Kolton and Tavyn meeting for the first time. It was amazing. I have never seen Tavyn so quiet, well behaved, solemn, frozen, etc... When we walked in Tavyn had to put on a mask, so I put one on to show him that it is okay, then we put on his. The mask was a little too big for his face and it kept sliding up into his eyes. As I carried him into the open bay where Kolton is at he seemed to instinctively know where his brother was located, his eyes focused like a laser beam onto to his brother. As we got closer to Kolton, Tavyn froze and his eyes got as big as saucers. There was an uncanny feeling in the air that these two boys knew exactly who they were and what they meant to each other. As Tavyn leaned forward out of my embrace to peer into Kolton's isolete, Kolton raised his tiny little arm towards Tavyn. At that point Tavyn reached his arm out to Kolton and leaned towards him as if he wanted to hold him. At that point I had to restrain him, and he screamed, and we exited the bay. All I can say is that the whole experience took my breath away!
Now onto Kolton, he is doing fine... about 5 lbs 11 ozs. I actually had to kick a nurse out of his area last night... this all started about 2 weeks ago. There was a nurse that was “caring” for Kolton 2 weeks ago, the minute I walked in to see Kolton and I met her, my parental sixth sense went crazy. This nurse seemed a little odd from the get go. She kept rambling about odd stuff, i.e. vampires, children raised by dogs, children raised by mentally handicapped people, etc... Not the kind of conversation that you would find appropriate for a NICU? To get her off of the odd topics I asked her his weight and she kept getting the conversion wrong from metric to standard. I ended up having to calculate it myself with a chart I have. I went about my business of tending to Kolton and ignoring her. She tried talking to the other nurses; they even tried avoiding her, as they walked away from her rolling their eyes. Now Kolton always gets a 9:00 feeding and the nurses typically start preparing his food at 8:45. I left the hospital at 8:55 with that uncomfortable feeling in my stomach that I don't want her to be taking care of Kolton. I also noticed that she had not prepared his dinner; I figured she would get to it a little later. Apparently not! The next day I came in, Kolton lost weight, 4 ozs!!! I talked to the MD and as we scanned the previous night’s records, there was a missing entry for his 9:00 feeding. The MD confronted the nurse and the nurse admitted that she forgot to feed him. No apologies or anything. The next two days his stats were like a roller coaster!!! You can only imagine how that made me feel!!! I vented my anger and frustration to the MD and stated that I do not want that nurse to ever care for Kolton again; I don't even want her near him. I went on to express that what if he needed an Rx that kept him alive and she forgot... So I thought we had resolution, and then last night happened! I came in to the hospital and the nurse that was taking care of Kolton was out to dinner. So I proceeded to Kangaroo with Kolton. Not 15 minutes later, guess who walks in, the crazy nurse. My blood pressure instantly spiked, I began to shake with anger and proceeded to yell for her to get away from my son, to get out, to go get the on-duty MD. She stood there asking what was wrong, as if she completely forgot what happened 2 weeks prior! She acted as though she has never seen me? I continued to let my voice rise stating the same requests. She finally got the hint and left. The MD came in and reassured me that said nurse will not care for Kolton ever again and gave us another nurse for the night. The good thing is that our neighbors George and Sue surprised me and came by right after everything happened. It was perfect timing that they showed up. I was able to vent the situation to them and they in turn consoled me. Plus they got to spend some quality time with Kolton.
So where do we go from here? We want to lodge a formal complaint… so we are looking into the formalities.
Sorry to burden all of you with this, but as a parent a lot of you can understand where we are coming from. I had to vent somewhere. I understand that people make mistakes… but shouldn’t the NICU be a “mistake free zone”? These are precious little lives that need extra care and attention. The only thing that we can do is put it into God’s hands!
Have a wonderful week.
All of our Love,
The Thompson Tribe
I want to start of by thanking all of you for the continued prayers, support, and reaching out. It is all of you that helps us get through the days and nights. If all of you were not out there, I don't know how we would do it.
I mentioned yesterday in my journal posting of a friend that is walking in the upcoming March of Dimes walk in honor of Kolton (aka Kolton’s Kruisers), I wanted to post her info:
www.marchforbabies.org/christeen
www.koltonthompson.blogspot.com
She is trying to raise $500 and is currently at $200. Any help she could get, we would be greatly appreciative. The walk is April 26, 2009, 400 Kenwood Parkway, Minneapolis, MN 55403Walk Distance: 4 milesRegistration Time: 10:00AMStart Time: 11:00 AMChapter: Greater Twin CitiesPhone #: (952) 835-3033
Thank you for your support of her, the March of Dimes, Kolton, and our family.
One other thing I forgot to mention was my take on Kolton and Tavyn meeting for the first time. It was amazing. I have never seen Tavyn so quiet, well behaved, solemn, frozen, etc... When we walked in Tavyn had to put on a mask, so I put one on to show him that it is okay, then we put on his. The mask was a little too big for his face and it kept sliding up into his eyes. As I carried him into the open bay where Kolton is at he seemed to instinctively know where his brother was located, his eyes focused like a laser beam onto to his brother. As we got closer to Kolton, Tavyn froze and his eyes got as big as saucers. There was an uncanny feeling in the air that these two boys knew exactly who they were and what they meant to each other. As Tavyn leaned forward out of my embrace to peer into Kolton's isolete, Kolton raised his tiny little arm towards Tavyn. At that point Tavyn reached his arm out to Kolton and leaned towards him as if he wanted to hold him. At that point I had to restrain him, and he screamed, and we exited the bay. All I can say is that the whole experience took my breath away!
Now onto Kolton, he is doing fine... about 5 lbs 11 ozs. I actually had to kick a nurse out of his area last night... this all started about 2 weeks ago. There was a nurse that was “caring” for Kolton 2 weeks ago, the minute I walked in to see Kolton and I met her, my parental sixth sense went crazy. This nurse seemed a little odd from the get go. She kept rambling about odd stuff, i.e. vampires, children raised by dogs, children raised by mentally handicapped people, etc... Not the kind of conversation that you would find appropriate for a NICU? To get her off of the odd topics I asked her his weight and she kept getting the conversion wrong from metric to standard. I ended up having to calculate it myself with a chart I have. I went about my business of tending to Kolton and ignoring her. She tried talking to the other nurses; they even tried avoiding her, as they walked away from her rolling their eyes. Now Kolton always gets a 9:00 feeding and the nurses typically start preparing his food at 8:45. I left the hospital at 8:55 with that uncomfortable feeling in my stomach that I don't want her to be taking care of Kolton. I also noticed that she had not prepared his dinner; I figured she would get to it a little later. Apparently not! The next day I came in, Kolton lost weight, 4 ozs!!! I talked to the MD and as we scanned the previous night’s records, there was a missing entry for his 9:00 feeding. The MD confronted the nurse and the nurse admitted that she forgot to feed him. No apologies or anything. The next two days his stats were like a roller coaster!!! You can only imagine how that made me feel!!! I vented my anger and frustration to the MD and stated that I do not want that nurse to ever care for Kolton again; I don't even want her near him. I went on to express that what if he needed an Rx that kept him alive and she forgot... So I thought we had resolution, and then last night happened! I came in to the hospital and the nurse that was taking care of Kolton was out to dinner. So I proceeded to Kangaroo with Kolton. Not 15 minutes later, guess who walks in, the crazy nurse. My blood pressure instantly spiked, I began to shake with anger and proceeded to yell for her to get away from my son, to get out, to go get the on-duty MD. She stood there asking what was wrong, as if she completely forgot what happened 2 weeks prior! She acted as though she has never seen me? I continued to let my voice rise stating the same requests. She finally got the hint and left. The MD came in and reassured me that said nurse will not care for Kolton ever again and gave us another nurse for the night. The good thing is that our neighbors George and Sue surprised me and came by right after everything happened. It was perfect timing that they showed up. I was able to vent the situation to them and they in turn consoled me. Plus they got to spend some quality time with Kolton.
So where do we go from here? We want to lodge a formal complaint… so we are looking into the formalities.
Sorry to burden all of you with this, but as a parent a lot of you can understand where we are coming from. I had to vent somewhere. I understand that people make mistakes… but shouldn’t the NICU be a “mistake free zone”? These are precious little lives that need extra care and attention. The only thing that we can do is put it into God’s hands!
Have a wonderful week.
All of our Love,
The Thompson Tribe
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