Taylor continues to make forward progress, ever so slowly. Today she was taken off the pacemaker (then put back on) to keep her heart rate steady. The purpose is just to take the pressure off the heart as it heals and she isn't quite ready to maintain a steady heart rate around 120 all on her own just yet. There is a possiblity she will need a pacemaker for a while which certainly isn't a big deal compared with everything else she has had going on! :)
The doctors also turned both the rate and the pressure down on the ventilator in preparation to take her off (possibly overnight) tomorrow. Her airways look good according to the CT scan results. Jason and I actually got to look at the images today along with her pulmonologist and he was able to explain to us her issue. Essentially her airways to the lungs were being pinched off by her enlarged pulmonary artery prior the surgery in February. The right side has recovered very well and is open and looking good, while the left is still a bit "squished" as the doctor told us today. However, this does not seem to be impeding air flow and is still an improvement from February. It will just take time to fully outgrow.
The nurses at the Fairfax PICU continue to be amazing and take lots of time to answer all of our questions about medication, etc. We learned today that Taylor will move through a protocol of being weaned off of the sedation and painkiller meds once she is off the ventilator. She has been on Fentanol and Versed, both very strong drugs that require weaning so that she doesn't experience withdrawl. This will involve methadone and likely valium. Wow!!!! However, as it was explained to us, babies don't have the psychological addiction to the meds so it is just a matter of stepping them down over several days to help the body flush them out. Taylor wasn't on all of these heavy meds last time, so this part is new to us.
Tomorrow (Wednesday) we plan to be at the hospital for rounds - sometime around 10 AM. We actually are able to listen in as the doctors share updates. The surgeon and cardiologists round at 7:30, so we will miss them, but we get all the updates when we come in from the nurses. If Taylor is off the vent and awake one of us will likely stay at least into the evening if not overnight.
Cameron has another swim meet tomorrow night and is swimming freestyle and butterfly. I am amazed at his confidence! Unfortunately, butterfly is the last stroke of the meet so it will be a long event. We are very proud that he wants to give it a try! Em is going to stay with a friend tomorrow evening so that one of us can be with Cam and the other with Taylor.
We will keep you posted on visiting. Today Christy Ryder came to visit with her daughter Caroline and Jason and I spent some time with them in the family waiting room while Taylor slept. Once she is awake her visitors will be limited but we would definitely love to see you! Just give one of us a call or shoot us an email and we will let you know a good time.
Thank you for continuing to lift Taylor up in prayer. God is really working in our lives and especially hers!
More tomorrow...
Tuesday, June 30, 2009
Monday, June 29, 2009
Monday, June 29, 2009
3 Days Post Surgery - 6/29
Pre-Surgery - 6/26
Jason and I spent about five hours at the hospital today talking with Taylor's doctors and nurses. She had a good night and continues to show progress. She has drained off a lot of fluid since yesterday and looked really good this morning. The doctors also decided to start turning down her vent settings to start "weaning" her this afternoon after the CT scan.
The CT scan showed that her right lung airways are a bit bigger than her left, thus the discrepancy in moving air through the lungs that they have been seeing. However, Dr. Osbourne, her pulminologist, feels that the scans did not show any deterioration or worsening since the ones he took in February prior to the last surgery. Since no obstruction was found and blood flow to the lungs is good, he feels that it is just going to take a bit more time for her body to adjust to coming off heart lung bypass and the swelling in her chest. Overall flow is good as well. He continues to feel that as she grows and her airways further develop her body will adjust itself and essentially she will grow out of this issue. Right now it makes sense to continue to keep her sedated and let her body heal slowly rather than push to get her off the vent. It sounded like she would probably be "resting" for a few more days in order to make sure that the removal of the breathing tube is successful.
The only other change today was the location of her central line. It was moved from her sub-clavical area (upper chest) to down in her groin. No real issues there.
All in all a good, uneventful day. We will check in with the nurses tonight and then head back over to PICU tomorrow morning. We tooks some pictures as well to document all of the lines she is currently hooked to. It is helpful to note the progression as drips, lines and breathing tubes come off. We know for some this picture is very hard to look at, but all in all she looks really good and her incision is healing nicely as well.
Thank you to the Weerens for the delicious dinner this evening. We really appreciate the care and help of our neighbors!
Cam had a great first day at Rec PAC and Em enjoyed spending time at the pool with our wonderful babysitter Genevive.
Please keep up the prayers!!! More tomorrow...
Love,
The Goodloes
Sunday, June 28, 2009
June 28, 2009 Update
Taylor has had a fairly quiet weekend at the PICU and Jason and I have spent quite a bit of time at home with Cameron and Emileigh. Taylor remains sedated and breathing with the assistance of the ventilator. She has experienced a few "bumps in the road" but the doctors shared today that they are seeing slow, positive progress and they are encouraged.
Friday night was not as quiet as the team had hoped it would be. Taylor looked great when we left - good Oxygen saturation and overall heart function. As the evening progressed she experienced several episodes of heart arythmias as well as a decrease in pressure and oxygen saturation. She stabilized overnight with the aid of medication and change to her vent settings.
I went to the hospital following Cameron's first Saturday swim meet! He placed second in freestyle and third in backstroke for the 6 and under age group. We are so proud of him and happy that we got to see him swim. I arrived at Fairfax just as the doctors were completing rounds and was able to talk to Dr. Shen, Taylor's surgeon, as well as her nurse for quite a while. Dr. Shen shared that he was pleased with her the way her heart was responding to the sugery but was still a bit concerned about her low oxygen saturation - at that point she was down in the 60s. However, he stated that he felt things were moving in a positive direction and that the team would work together to figure out the appropriate vent settings to best support her breathing. The overall concern continued to the be her small airway and the reaction to the new blood flow. As the day progressed the doctors changed the ventilator settings and took her off of the mixture of helium and oxygen and switched to nitric oxide. We understand now that both are a bit easier to move through the airways than pure oxygen/nitrogen mix (like room air). Anyway, her sats cam back up to the high 70s/low 80s and the doctors were please. Taylor had a stable Saturday night.
This morning, Jason and I both went to the hospital and saw Taylor. She looked a bit more puffy than we had noticed before and the team shared that they were working to increase her urine output and draw off fluid which seemed to be helping with her breathing as well. Overall she looked really good, sats were being maintained above 75 and her pressure was good. She had an echocardiogram (heart ultrasound) to see how the repair looked and how the blood was flowing. The cardiologist shared that the repair was functioning very well and blood flow was excellent! Great news. However, she still seems to be having a bit of trouble with her airways and tomorrow a CT Scan will be done to see how the airways are moving air and blood. Overall lung function is good and all of her other numbers are good so the doctors are a bit perplexed. However, they let us know that they feel she is moving in the right direction if every so slowly. :)
Jason's parents went home today. We really appreciated their care of Cam and Em for the past four days. We are going to take one day at a time and right now since Taylor doesn't need us at the hospital we are spending as much time with them as we can.
We appreciate the continued prayers and emails of support. We are all praying for continued progress for Taylor and an answer to her airway mystery. One theory is that once more fluid comes off and the vent is removed, she will actually improve. We will have to wait and see what the CT shows tomorrow...
Thanks again for all of the love and support you have shown our family. Your notes really give us strength, encoragement and a positive outlook! LOL!
Friday night was not as quiet as the team had hoped it would be. Taylor looked great when we left - good Oxygen saturation and overall heart function. As the evening progressed she experienced several episodes of heart arythmias as well as a decrease in pressure and oxygen saturation. She stabilized overnight with the aid of medication and change to her vent settings.
I went to the hospital following Cameron's first Saturday swim meet! He placed second in freestyle and third in backstroke for the 6 and under age group. We are so proud of him and happy that we got to see him swim. I arrived at Fairfax just as the doctors were completing rounds and was able to talk to Dr. Shen, Taylor's surgeon, as well as her nurse for quite a while. Dr. Shen shared that he was pleased with her the way her heart was responding to the sugery but was still a bit concerned about her low oxygen saturation - at that point she was down in the 60s. However, he stated that he felt things were moving in a positive direction and that the team would work together to figure out the appropriate vent settings to best support her breathing. The overall concern continued to the be her small airway and the reaction to the new blood flow. As the day progressed the doctors changed the ventilator settings and took her off of the mixture of helium and oxygen and switched to nitric oxide. We understand now that both are a bit easier to move through the airways than pure oxygen/nitrogen mix (like room air). Anyway, her sats cam back up to the high 70s/low 80s and the doctors were please. Taylor had a stable Saturday night.
This morning, Jason and I both went to the hospital and saw Taylor. She looked a bit more puffy than we had noticed before and the team shared that they were working to increase her urine output and draw off fluid which seemed to be helping with her breathing as well. Overall she looked really good, sats were being maintained above 75 and her pressure was good. She had an echocardiogram (heart ultrasound) to see how the repair looked and how the blood was flowing. The cardiologist shared that the repair was functioning very well and blood flow was excellent! Great news. However, she still seems to be having a bit of trouble with her airways and tomorrow a CT Scan will be done to see how the airways are moving air and blood. Overall lung function is good and all of her other numbers are good so the doctors are a bit perplexed. However, they let us know that they feel she is moving in the right direction if every so slowly. :)
Jason's parents went home today. We really appreciated their care of Cam and Em for the past four days. We are going to take one day at a time and right now since Taylor doesn't need us at the hospital we are spending as much time with them as we can.
We appreciate the continued prayers and emails of support. We are all praying for continued progress for Taylor and an answer to her airway mystery. One theory is that once more fluid comes off and the vent is removed, she will actually improve. We will have to wait and see what the CT shows tomorrow...
Thanks again for all of the love and support you have shown our family. Your notes really give us strength, encoragement and a positive outlook! LOL!
Friday, June 26, 2009
Taylor is Out of Surgery - June 26, 2009
Taylor came out of the surgery which began around 9 at about 2:30 today. We met with Dr. Shen, her surgeon, in the PICU family room at about 3 PM. He shared with us that the surgery went well and all that he had planned to do was accomplished. As he shared with us yesterday, her lung resistance is still a bit higher than he would like to see but he noted improvement throughout the surgery. It is critical for the lung resistance to be low so that the heart does not need to pump against the lungs. The goal is for the blood to flow passively through the lungs. He advised us that the doctors will be watching her pressures and Oxygen sats carefully and if needed give her medication to "relax" the lungs a bit. He also shared that the hope is to get her off the ventilator as soon as she seems ready because it "pushes" air into the lungs and it is much better for her to be breathing on her own. Right now he told us we will wait and see how she responds and just go from there.
All in all it has been a long, exhausting day. We have had the support of our pastors Barbara and Tom here today as well as Lindy and Genevive Nevin who have been care providers for Taylor, Cameron and Emileigh. Thank you for the emails and posts on Facebook sharing support and prayers. We have been really touched by your notes to us and are boosted knowing that Taylor is own your hearts as well.
We ask that you continue to pray for strength for Taylor as she recovers and that her body does what the doctor's hope for it to do - heal itself and adjust to the new blood routing through her heart into her lungs to her body.
Jason and I plan to stay here at Fairfax till Taylor is settled, talk to the doctors and then be home for the night. Cameron is swimming freestyle and backstroke tomorrow morning in the Franklin Glen swim meet and we want to be sure to be with him to show our encouragement.
We will continue to post information as we have it. We know that you understand that we probably wil not spend a lot of time on the phone over the next few days. Feel free to email us at goodloe@evolvetech.com or on Facebook.
Please pass this blog on to anyone who you feel will be interested.
Love,
The Goodloes
All in all it has been a long, exhausting day. We have had the support of our pastors Barbara and Tom here today as well as Lindy and Genevive Nevin who have been care providers for Taylor, Cameron and Emileigh. Thank you for the emails and posts on Facebook sharing support and prayers. We have been really touched by your notes to us and are boosted knowing that Taylor is own your hearts as well.
We ask that you continue to pray for strength for Taylor as she recovers and that her body does what the doctor's hope for it to do - heal itself and adjust to the new blood routing through her heart into her lungs to her body.
Jason and I plan to stay here at Fairfax till Taylor is settled, talk to the doctors and then be home for the night. Cameron is swimming freestyle and backstroke tomorrow morning in the Franklin Glen swim meet and we want to be sure to be with him to show our encouragement.
We will continue to post information as we have it. We know that you understand that we probably wil not spend a lot of time on the phone over the next few days. Feel free to email us at goodloe@evolvetech.com or on Facebook.
Please pass this blog on to anyone who you feel will be interested.
Love,
The Goodloes
Thursday, June 25, 2009
Taylor Update - June 25, 2009
We checked into Fairfax this morning at 6 and after Taylor was prepped and readied for the procedure, she was taken back at about 8. We were able to be with her in the procedure room while the anesthesiologist sedated her. We met her back in the recovery room at about 10:15 and then met with Dr. Shen, her surgeon.
Surgery will proceed as planned tomorrow morning. She is the first case and will be taken down to the OR around 7 AM. We are now in her room on the pediatrics floor and she is sleeping peacefully in her crib after having gulped down an 8 ounce bottle! She wasn't able to eat after 2 AM, so she was definitely hungry!!!
Taylor will have several parts of her cardiovascular anatomy changed tomorrow. This is the first
part of the Fontan. From Wikipedia:
The Fontan is usually done as a two staged repair.
The first stage, also called a Bidirectional Glenn procedure or Hemi-Fontan (see also Kawashima procedure), involves redirecting oxygen-poor blood from the top of the body to the lungs. That is, the pulmonary arteries are disconnected from their existing blood supply. The superior vena cava (SVC), which carries blood returning from the upper body, is disconnected from the heart and instead redirected into the pulmonary arteries. The inferior vena cava (IVC), which carries blood returning from the lower body, continues to connect to the heart.
At this point, patients are no longer in that delicate balance, and the single ventricle is doing much less work. They usually can grow adequately, and are less fragile. However, they still have marked hypoxia (because of the IVC blood that is not fed into the lungs to be oxygenated), and the ventricle is still doing more work than expected. Therefore most patients are referred for another surgery.
We will cross that bridge when we come to it when she is older. Dr. Shen told us that he will also enlarge her ASD (atrial septal defect) or hole in the septum between the atria to allow for the oxygen rich and poor blood to mix more easily and reduce the load on her heart in general. While he feels that she should do very well, he did review all of the possible complications. We are thinking positive and praying that her surgery goes just as expected and without issues.
We greatly appreciate the ongoing prayers and support. Please continue to pray for Taylor and our family as we navigate the coming days and weeks of her surgery and recovery.
An update will be posted tomorrow as well!
Surgery will proceed as planned tomorrow morning. She is the first case and will be taken down to the OR around 7 AM. We are now in her room on the pediatrics floor and she is sleeping peacefully in her crib after having gulped down an 8 ounce bottle! She wasn't able to eat after 2 AM, so she was definitely hungry!!!
Taylor will have several parts of her cardiovascular anatomy changed tomorrow. This is the first
part of the Fontan. From Wikipedia:
The Fontan is usually done as a two staged repair.
The first stage, also called a Bidirectional Glenn procedure or Hemi-Fontan (see also Kawashima procedure), involves redirecting oxygen-poor blood from the top of the body to the lungs. That is, the pulmonary arteries are disconnected from their existing blood supply. The superior vena cava (SVC), which carries blood returning from the upper body, is disconnected from the heart and instead redirected into the pulmonary arteries. The inferior vena cava (IVC), which carries blood returning from the lower body, continues to connect to the heart.
At this point, patients are no longer in that delicate balance, and the single ventricle is doing much less work. They usually can grow adequately, and are less fragile. However, they still have marked hypoxia (because of the IVC blood that is not fed into the lungs to be oxygenated), and the ventricle is still doing more work than expected. Therefore most patients are referred for another surgery.
We will cross that bridge when we come to it when she is older. Dr. Shen told us that he will also enlarge her ASD (atrial septal defect) or hole in the septum between the atria to allow for the oxygen rich and poor blood to mix more easily and reduce the load on her heart in general. While he feels that she should do very well, he did review all of the possible complications. We are thinking positive and praying that her surgery goes just as expected and without issues.
We greatly appreciate the ongoing prayers and support. Please continue to pray for Taylor and our family as we navigate the coming days and weeks of her surgery and recovery.
An update will be posted tomorrow as well!
Thursday, June 4, 2009
June 4, 2009
Hi!
Thanks to all of you who have been checking regularly and sorry we haven't posted anything recently. Remember, no news is GOOD news!!! Taylor has continued to grow and thrive and most importantly stay healthy!!! She is now over 14 pounds and actually a bit chubby. She has beautiful red hair as well. Who knew?
Right now the plan is to head into Fairfax Hospital on June 25th bright and early. Taylor is scheduled to have a catheterization procedure to measure the pressures in and around her heart. The information gathered from this procedure will be used to help guide the surgery scheduled for the following morning, June 26. We will meet with the cardiologist and her surgeon following the catheterization and will know more at that time. Please pray that Taylor is ready for surgery and that all looks as the doctors expect. We are hoping and praying for a reasonably short hospital stay and then plan to spend time at home in July helping Taylor recuperate.
Cam and Em will be involved in swim team and camps and a hopefully typical summer fun stuff!
Please continue to check here for more information. While we are in the hospital, we will try to post daily updates here and on Facebook. You can always email us directly at goodloe@evolvetech.com. Please email us if you are interested in stopping by the hospital. Visitors are good for me and Jason but not always allowed for Taylor. We would be happy to meet you for coffee or a walk!
LOL, from the Goodloes
Thanks to all of you who have been checking regularly and sorry we haven't posted anything recently. Remember, no news is GOOD news!!! Taylor has continued to grow and thrive and most importantly stay healthy!!! She is now over 14 pounds and actually a bit chubby. She has beautiful red hair as well. Who knew?
Right now the plan is to head into Fairfax Hospital on June 25th bright and early. Taylor is scheduled to have a catheterization procedure to measure the pressures in and around her heart. The information gathered from this procedure will be used to help guide the surgery scheduled for the following morning, June 26. We will meet with the cardiologist and her surgeon following the catheterization and will know more at that time. Please pray that Taylor is ready for surgery and that all looks as the doctors expect. We are hoping and praying for a reasonably short hospital stay and then plan to spend time at home in July helping Taylor recuperate.
Cam and Em will be involved in swim team and camps and a hopefully typical summer fun stuff!
Please continue to check here for more information. While we are in the hospital, we will try to post daily updates here and on Facebook. You can always email us directly at goodloe@evolvetech.com. Please email us if you are interested in stopping by the hospital. Visitors are good for me and Jason but not always allowed for Taylor. We would be happy to meet you for coffee or a walk!
LOL, from the Goodloes
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