Tuesday, January 15, 2013
Callie's Surgery a Success
Callie's surgery went AMAZINGLY well! The surgeons were very happy with the outcome. It was a very long few days at the hospital. She ended up coming home on Thursday. By Friday she was already trying to crawl a little, but pain would usually kick in. Today she is all over the place. Up and down the hall and loves to hang out on the floor in her room. She is still on pain medication as she has a broken sternum from the surgery that will need to heal, however she is on a minimal amount. She has been such a trooper and we are so proud of how well she is doing!
Monday, January 7, 2013
Heart Surgery - Day of
Callie's Heart surgery went well today. The surgeons were very happy with the procedure. She was the first of 4 cases this week. The Milwaukee team comes to Marshfield for 1 week every 2 months. She was brought back around 8am. The actual surgery was about 30-60 minutes however all the prep and closing is what takes the time. They have to do an echo (heart ultrasound) before and after the surgery to get a good baseline. They also placed a chest tube for the blood in the cavity to drain alone with pacer wires. These are little wires they will pull before we go home. If they need to change the pace her heart is beating they can hook the wires up to a little device to change it. We were able to see here around 2pm. I always hate the first few hours out of surgery. They decided to leave the intubation tube in over night to help her breath. This means they need to keep her sedated. They have to figure out what the right amount of medication is to keep her sedated yet not too deep. It is always hard while she is trying to fight to wake up and is choking and coughing on the tube. By 4 they had it all figured out.
They have been watching her very closely this evening. Her blood pressure kept creeping down little by little. It is always hard trying to figure out if it is the medication, low fluid, heart rate or who know what? They gave her some extra fluid which helped, but did not completely do the trick. The surgeon just happened to be on the floor so he also came in. When she came out of surgery her heart rate was around 130. It had dropped to 113. They decided to hook up the pacer wires to help increase her heart rate back up to 130. She will stay hooked up until tomorrow. Her blood pressure also increased with the change in pace so that was all good. The PICU doctor explained it to me which really helped. He did mention this is the exact reason they put the pacer wires in. It is not uncommon to need to use them. Callie's body is getting used to her "new" heart along with the extra stress it just went through.
Also, Callie's hemoglobin has slowly been decreasing through out the day. Ideally they would like it between 10-12. She was at 8 so they decided to give her some blood. Thank you to all the people that are always donating blood. This is the second surgery in 3 months Callie has needed blood.
As I sit her and reflect on the day I am glad to say this day is almost over. I have learned so much more about a heart than I ever thought I would. Some days I wish I was a nurse just so I would know what all of this means. Other days I am so grateful I am not as it would just add worry. Thankfully we have had a great team of doctors and nurses to constantly answer "What does that mean?" I must sound like a broken record today. She really is doing well considering everything she has been through.
Tomorrow they will most likely pull Callie's breathing tube and she will lose some of the IV lines going into her body. She currently has 4 different access points to her body with 14 lines going into her. Slowly those will decrease. Some are heart medications, others are fluids, antibiotics, blood and some that I really have no idea.
As soon as she is feeling better I will post some pictures. I do not want to overwhelm any one with all the lines so I will not post any right now. Please say an extra prayer for healing and strength. For now I am going to try and get some rest among the beeps.
They have been watching her very closely this evening. Her blood pressure kept creeping down little by little. It is always hard trying to figure out if it is the medication, low fluid, heart rate or who know what? They gave her some extra fluid which helped, but did not completely do the trick. The surgeon just happened to be on the floor so he also came in. When she came out of surgery her heart rate was around 130. It had dropped to 113. They decided to hook up the pacer wires to help increase her heart rate back up to 130. She will stay hooked up until tomorrow. Her blood pressure also increased with the change in pace so that was all good. The PICU doctor explained it to me which really helped. He did mention this is the exact reason they put the pacer wires in. It is not uncommon to need to use them. Callie's body is getting used to her "new" heart along with the extra stress it just went through.
Also, Callie's hemoglobin has slowly been decreasing through out the day. Ideally they would like it between 10-12. She was at 8 so they decided to give her some blood. Thank you to all the people that are always donating blood. This is the second surgery in 3 months Callie has needed blood.
As I sit her and reflect on the day I am glad to say this day is almost over. I have learned so much more about a heart than I ever thought I would. Some days I wish I was a nurse just so I would know what all of this means. Other days I am so grateful I am not as it would just add worry. Thankfully we have had a great team of doctors and nurses to constantly answer "What does that mean?" I must sound like a broken record today. She really is doing well considering everything she has been through.
Tomorrow they will most likely pull Callie's breathing tube and she will lose some of the IV lines going into her body. She currently has 4 different access points to her body with 14 lines going into her. Slowly those will decrease. Some are heart medications, others are fluids, antibiotics, blood and some that I really have no idea.
As soon as she is feeling better I will post some pictures. I do not want to overwhelm any one with all the lines so I will not post any right now. Please say an extra prayer for healing and strength. For now I am going to try and get some rest among the beeps.
Heart Surgey
Callie is having heart surgery today. This is the one surgery I prayed that neither of the kids would ever have. There is just something that scares me about surgery on the heart. Thankfully all of the doctors have assured me this is a "common" heart surgery. It just kills me to know my baby will have yet another scar. She has a wonderful team taking good care of her. We pray for a speedy recovery and lots of strength for the nurses and doctors taking care of her. We will be at the hospital for 3-6 days assuming all goes as planned. I will facebook and blog as we have updates. Please continue to pray for our family and the team taking care of Callie.
Zak is at home with the nurses. He is back to school today. He will be missing his sister these few days she is gone, but he may also enjoy some quiet time with out be climbed on :)
Zak is at home with the nurses. He is back to school today. He will be missing his sister these few days she is gone, but he may also enjoy some quiet time with out be climbed on :)
Friday, January 4, 2013
A Reflection of 2012
As I sit here and reflect on 2012 I cannot help but be so grateful how far the kids have come despite all the bumps in the road medically. We have an amazing support around us of Family, Friends, Nurses, Doctors, Therapists, Teachers and the list goes on. We could not have gotten through 2012 without each and every person.
In February Callie underwent tonsil and adenoid removal. We also asked for one of her ear tubes to come out as she was having issues along with a nasal scope. We just felt she was not breathing through her nose correctly. The surgery went well, however it did result in a septic blood infection which meant we had to give her IV antibiotics. This was our first treatment of IV meds at home. We also learned her nose was not open and were referred to other doctors. Getting to the correct doctor became a challenge and it was not until July when we connected with the correct person. After that appointment it was September when we got in for a second opinion. Although we still had not got anywhere on her nose all the tests that were ran resulted in a new finding. Her brain was growing, however her skull was not. It was 1 complete fused bone. She would need to have surgery on her skull to make it bigger before doing anything else. In October she underwent her first skull surgery along with neck surgery to remove a small bone. The surgery once again went well, however ended up in a terrible infection at the incision site of her neck. We were right back to IV antibiotics at home. This time it was not so simple. The line broke twice and we finally took it out and put her on oral antibiotics. This resulted in an allergic reaction to a medication she had been on many times in the past. Since the surgery she has been amazing. She is so happy, loves to crawl all over and look for her brother. When he is at school she crawls to his bedroom at the end of the hall to look for him, only to find he is not there. It is so much fun just to watch her move and smile. I truly cannot get enough of it. When I lay on the floor she loves to lay on my head and give me kisses, which is more like a big slobber, but it is so cute when it is your own child. I am just so amazed each and every day when that surgery has done for her.
As for the rest of Callie’s year she also ended up having her eye surgery in May, which also resulted in and infection. Thankfully this one we were able to take care with oral antibiotics. It seemed very major at the time, but looking back at her year it really was minor. In and among all the medical and trips to the clinic she still sees all her therapists. They still come to the home instead of sending her to school. Hopefully this fall she will go to the class room. She has an amazing team of therapists and teachers that work with her. One of her goals at the beginning of the school year was just to sit through one book. She is now doing 3 very well! Callie still loves to hear herself talk and look at her Best Friend in the Mirror. She goes everywhere with Callie.
As for Zak, he too has had a bit of a rough year. Thankfully it only started rough and the end was good. In March he got pneumonia and after doctoring and 3 trips to the ER he ended up in the hospital intubated (tube down his throat breathing for him). He had actually went to the clinic on a Monday afternoon and was doing great. Around 4:30-5:00 he started to cough and took a huge turn for the worst. We still really have no idea what happened to him. There are many theories, but no solid answers. He spent 4 days intubated and on day 5 we went home. I can honestly say I have never been so scared for my child’s life. I was a wreck! Thankfully he recovered well. It took him a few weeks to get all of his energy back. He did end up with a case of Bells Palsey from the infection. Slowly this went away too. By May he was doing well and at school he took a bit of a spill. Over the curb in his wheelchair and onto his face he landed, resulting in a broken nose. Once Zak got over the pain and shock he was back to himself. (Literally a few hours later.) He still has the scars to prove his battle. Zak has been such a happy BIG boy this year. He still loves his toys and all his friends at school. We are always hearing cute little stories about how he is hugging his friends at recess or trying to look up the little girls skirts. Everyone also tells us how wonderful he is to be around. He is truly a little blessing and so well mannered…most of the time. It has been 1 year now since he has had his new adaptive bike. We brought it to school for him so he could use it during gym. He has been doing amazing moving it and slowing learning to turn the wheel.
In between the visits we spent much of the summer in the pool in our back yard. The kids just loved it. Zak was swimming on his own with just an air tube around his chest. Callie loved to splash, but she was a bit more fussy on the temp of the water. Family and Friends were over most weekends swimming during the day and having a camp fire cook out at night. The new house has been amazing for the kids and allowed us to do so much more with them while having fun!
Big news for Shared Blessings in 2012. We officially became a Non-profit! We hosted an open house and two play groups at the end of the year. Santa was even able to join us for the last play group where the kids and families were able to get professional pictures taken! If you are interested in helping or donating to Shared Blessings in 2013 check out our website at http://sharedblessingskids.org/ or e-mail to admin@sharedblessingskids.org
In February Callie underwent tonsil and adenoid removal. We also asked for one of her ear tubes to come out as she was having issues along with a nasal scope. We just felt she was not breathing through her nose correctly. The surgery went well, however it did result in a septic blood infection which meant we had to give her IV antibiotics. This was our first treatment of IV meds at home. We also learned her nose was not open and were referred to other doctors. Getting to the correct doctor became a challenge and it was not until July when we connected with the correct person. After that appointment it was September when we got in for a second opinion. Although we still had not got anywhere on her nose all the tests that were ran resulted in a new finding. Her brain was growing, however her skull was not. It was 1 complete fused bone. She would need to have surgery on her skull to make it bigger before doing anything else. In October she underwent her first skull surgery along with neck surgery to remove a small bone. The surgery once again went well, however ended up in a terrible infection at the incision site of her neck. We were right back to IV antibiotics at home. This time it was not so simple. The line broke twice and we finally took it out and put her on oral antibiotics. This resulted in an allergic reaction to a medication she had been on many times in the past. Since the surgery she has been amazing. She is so happy, loves to crawl all over and look for her brother. When he is at school she crawls to his bedroom at the end of the hall to look for him, only to find he is not there. It is so much fun just to watch her move and smile. I truly cannot get enough of it. When I lay on the floor she loves to lay on my head and give me kisses, which is more like a big slobber, but it is so cute when it is your own child. I am just so amazed each and every day when that surgery has done for her.
As for the rest of Callie’s year she also ended up having her eye surgery in May, which also resulted in and infection. Thankfully this one we were able to take care with oral antibiotics. It seemed very major at the time, but looking back at her year it really was minor. In and among all the medical and trips to the clinic she still sees all her therapists. They still come to the home instead of sending her to school. Hopefully this fall she will go to the class room. She has an amazing team of therapists and teachers that work with her. One of her goals at the beginning of the school year was just to sit through one book. She is now doing 3 very well! Callie still loves to hear herself talk and look at her Best Friend in the Mirror. She goes everywhere with Callie.
As for Zak, he too has had a bit of a rough year. Thankfully it only started rough and the end was good. In March he got pneumonia and after doctoring and 3 trips to the ER he ended up in the hospital intubated (tube down his throat breathing for him). He had actually went to the clinic on a Monday afternoon and was doing great. Around 4:30-5:00 he started to cough and took a huge turn for the worst. We still really have no idea what happened to him. There are many theories, but no solid answers. He spent 4 days intubated and on day 5 we went home. I can honestly say I have never been so scared for my child’s life. I was a wreck! Thankfully he recovered well. It took him a few weeks to get all of his energy back. He did end up with a case of Bells Palsey from the infection. Slowly this went away too. By May he was doing well and at school he took a bit of a spill. Over the curb in his wheelchair and onto his face he landed, resulting in a broken nose. Once Zak got over the pain and shock he was back to himself. (Literally a few hours later.) He still has the scars to prove his battle. Zak has been such a happy BIG boy this year. He still loves his toys and all his friends at school. We are always hearing cute little stories about how he is hugging his friends at recess or trying to look up the little girls skirts. Everyone also tells us how wonderful he is to be around. He is truly a little blessing and so well mannered…most of the time. It has been 1 year now since he has had his new adaptive bike. We brought it to school for him so he could use it during gym. He has been doing amazing moving it and slowing learning to turn the wheel.
In between the visits we spent much of the summer in the pool in our back yard. The kids just loved it. Zak was swimming on his own with just an air tube around his chest. Callie loved to splash, but she was a bit more fussy on the temp of the water. Family and Friends were over most weekends swimming during the day and having a camp fire cook out at night. The new house has been amazing for the kids and allowed us to do so much more with them while having fun!
Big news for Shared Blessings in 2012. We officially became a Non-profit! We hosted an open house and two play groups at the end of the year. Santa was even able to join us for the last play group where the kids and families were able to get professional pictures taken! If you are interested in helping or donating to Shared Blessings in 2013 check out our website at http://sharedblessingskids.org/ or e-mail to admin@sharedblessingskids.org
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