Well...we are still here. Sorry no posts for a few days. We were bummed to learn Thursday that Taylor's Chylothorax had not healed and the full fat diet caused about 300 cc of fluid to pool in the right chest cavity. So the low drainage we had accomplished earlier in the week was eradicated and we had to revert to fat free again.
Good new...the drain is still sunctioning well and the fluid drained off quickly Thursday. It drastically reduced Friday and is even less today.
The plan is to get back to a very low level and then pull out the chest tube and go home with a strict fat free diet for about a month. No problem!!!
Bad news...we are stuck here through July 4th and all of us have just about had enough,especially T. Cam and Em visited today after the swim meet and Jason is now home with them and will enjoy two neighborhood BBQs tonight. Sigh...I will go home tomorrow and switch for neighborhood fireworks and happy hour.
So many have offered to assist us with shopping, the kids, etc and we greatly appreciated it!! The meals and nutritious snacks from the Maniks, McClesky's, Miriam R., the Hodinkos and Gareys are so appreciated. Hope to see you all very, very soon. LOve to all!!!
Saturday, July 2, 2011
Tuesday, June 28, 2011
June 28, 2011 - Day 19!
Well here we are! Just a quick update this morning: Taylor's drainage as slowed significantly and the doctors will check back with us after their first surgical case this morning (around noon) to see if it picks up at all with activity.
So far so good.
So here is what I understand the plan to be:
1. Check drainage levels
2. Feed Taylor regular diet to see if fluid output increases (so far it has not! :)
3. Decide whether or not to pull the chest tube and then xray or xray and then pull the tube. Her xray Sunday was clear and her chest free of fluid!
4. Check bloodwork
5. Decide if she is going home and when and what the follow-up will be!
We are almost out the door. Thanks for all the prayers and support via phone, email, FB, etc. Sounding like tomorrow is a REAL possibility!!!
Thanks especially for the delicious meals and snacks. We have recently had yummy enchiladas and grilled Mahi.
Looking forward to a long July 4th weekend!
So far so good.
So here is what I understand the plan to be:
1. Check drainage levels
2. Feed Taylor regular diet to see if fluid output increases (so far it has not! :)
3. Decide whether or not to pull the chest tube and then xray or xray and then pull the tube. Her xray Sunday was clear and her chest free of fluid!
4. Check bloodwork
5. Decide if she is going home and when and what the follow-up will be!
We are almost out the door. Thanks for all the prayers and support via phone, email, FB, etc. Sounding like tomorrow is a REAL possibility!!!
Thanks especially for the delicious meals and snacks. We have recently had yummy enchiladas and grilled Mahi.
Looking forward to a long July 4th weekend!
Saturday, June 25, 2011
June 25, 2011
Day 16 here at Fairfax. Taylor continues to heal nicely and it seems we may have turned the corner on the drainage. Her bloodwork and chest xray from Thursday indicate the drainage is lessening and the diuretics seem to be at the right levels to dry things up without inhibiting the amount of flow needed to make her new system work.
We are hanging out for the weekend and hopeful that follow-up chest xray and bloodwork Monday, as well as the drainage numbers say it is time to take the tube out and send Taylor home. :)
Cameron had a super basketball game Thursday and dropped time in all of his swim events this morning. Em has been a big helper at home and with Taylor at the hospital.
We are hanging out for the weekend and hopeful that follow-up chest xray and bloodwork Monday, as well as the drainage numbers say it is time to take the tube out and send Taylor home. :)
Cameron had a super basketball game Thursday and dropped time in all of his swim events this morning. Em has been a big helper at home and with Taylor at the hospital.
Thursday, June 23, 2011
June 23, 2011 - Two weeks to the day of surgery!
Taylor continues to do very well recovering from surgery. Today is day 14 here at Fairfax and she is in great spirits. Jason and I continue to alternate days and nights at the hospital so we get one night on and one night at home with Cameron and Emileigh. Taylor's aweseome nanny Ashley has been here every day to play and help too as well as at home many, many days to help with Cam and Em.
Taylor is now on three different diuretics and is peeing up a storm in addition to her non-fat diet. Today finally this seems to be making a difference! Her fluid drainage is down and her activity level is way up!!
She has explored the entire hospital and pretty much has free reign here with the exception of leaving the building. Yeah! We have been playing in the play room, riding the elevators and escalators and visiting the gift shops and coffee bars in the lobby. Today she had her face painted like a puppy by a volunteer and she LOVED it!
Thanks to all who have visited at the hospital(Joel, Kristin and Babs) and brought us fat free snacks for her!!! The meals we have had from Kristin Lisenby, Christy Pinnell and snacks from Karen Tinker and Anne Apple have been perfect, especially for the kiddos at home.
Cam and Em have been busy with swim team and enjoying the end of school. Emileigh had her best times in freestyle and backstroke last night at the swim meet and was legal in both. She placed 6th for 6 and unders in backstroke. We are so proud of her. Cam swam freestyle and achieved his personal best time which also earned him a spot to swim freestyle in Saturday's meet along with Backstroke, Breastroke and the relay. Tonight he is playing in his first summer league basketball game as part of the Reston Hurricanes. We are definitely keeping everyone busy. Thanks to friends who have pitched in to also entertain Cam and Em - today the Allens and tomorrow the Hilburgers, earlier this week the Hillelsohns and Fontanillas. They are having lots of fun!!!
Thanks for your continued prayers for Taylor and all our heart baby friends here at Fairfax.
Love from the Goodloes
Taylor is now on three different diuretics and is peeing up a storm in addition to her non-fat diet. Today finally this seems to be making a difference! Her fluid drainage is down and her activity level is way up!!
She has explored the entire hospital and pretty much has free reign here with the exception of leaving the building. Yeah! We have been playing in the play room, riding the elevators and escalators and visiting the gift shops and coffee bars in the lobby. Today she had her face painted like a puppy by a volunteer and she LOVED it!
Thanks to all who have visited at the hospital(Joel, Kristin and Babs) and brought us fat free snacks for her!!! The meals we have had from Kristin Lisenby, Christy Pinnell and snacks from Karen Tinker and Anne Apple have been perfect, especially for the kiddos at home.
Cam and Em have been busy with swim team and enjoying the end of school. Emileigh had her best times in freestyle and backstroke last night at the swim meet and was legal in both. She placed 6th for 6 and unders in backstroke. We are so proud of her. Cam swam freestyle and achieved his personal best time which also earned him a spot to swim freestyle in Saturday's meet along with Backstroke, Breastroke and the relay. Tonight he is playing in his first summer league basketball game as part of the Reston Hurricanes. We are definitely keeping everyone busy. Thanks to friends who have pitched in to also entertain Cam and Em - today the Allens and tomorrow the Hilburgers, earlier this week the Hillelsohns and Fontanillas. They are having lots of fun!!!
Thanks for your continued prayers for Taylor and all our heart baby friends here at Fairfax.
Love from the Goodloes
Tuesday, June 21, 2011
June 21 - 12 days post Fontan
Well we are still staying at the lovely INOVA Fairfax Hotel and Spa!!!
This morning the surgeons told Jason they would discharge T tomorrow and let her go home with the chest tube. We will need to continue to follow the diet. However, her regular Cardiologist does not want her to be the first Fontan kid to go home witha tube as the team does ot have a set protocol to deal with issues if they arise.
Sigh...the drain keeps draining, the diet keeps going and you know where to find us!!!
Love to al and please pray that her chest stops draining soon!!!
Happy last day of school. Many thanks to Miriam Rutherford, the Cognetta family, the Appler family and Kristin Lisenby and Amy Whiteman for all of the tasty snacls and meals.
This morning the surgeons told Jason they would discharge T tomorrow and let her go home with the chest tube. We will need to continue to follow the diet. However, her regular Cardiologist does not want her to be the first Fontan kid to go home witha tube as the team does ot have a set protocol to deal with issues if they arise.
Sigh...the drain keeps draining, the diet keeps going and you know where to find us!!!
Love to al and please pray that her chest stops draining soon!!!
Happy last day of school. Many thanks to Miriam Rutherford, the Cognetta family, the Appler family and Kristin Lisenby and Amy Whiteman for all of the tasty snacls and meals.
Friday, June 17, 2011
June 17, 2011 - TGIF
Just switched with Jason a few hours ago after bringing Cameron and Emileigh here for a visit and some play time in the play room with Taylor. Since we will likely be here for at least another week I brought some beloved toys from home for T to enjoy.
Taylor has a condition called Chylothorax and we have switched her to a non-fat diet to allow her lymph system to heal. No easy feat for a child who loves things with lost of fat but she is trying hard.
This afternoon for the first time she expressed that she wants to go home...sometime next week we can hope!!! Please pray that this condition heals quickly and her fluid drainage stops.
We will hopefully enjoy some of Fatherks Day together. Jason is going to Cam's swim meet tommorrow. He is swimming 4 events. Wow! Both Cam and Em have sleepovers planned for tomorrow night as well and I hope to catch up with some friends and on sleep!!!
We welcome healthy visitors!!!
We will keep you posted. Happy Friday!
Taylor has a condition called Chylothorax and we have switched her to a non-fat diet to allow her lymph system to heal. No easy feat for a child who loves things with lost of fat but she is trying hard.
This afternoon for the first time she expressed that she wants to go home...sometime next week we can hope!!! Please pray that this condition heals quickly and her fluid drainage stops.
We will hopefully enjoy some of Fatherks Day together. Jason is going to Cam's swim meet tommorrow. He is swimming 4 events. Wow! Both Cam and Em have sleepovers planned for tomorrow night as well and I hope to catch up with some friends and on sleep!!!
We welcome healthy visitors!!!
We will keep you posted. Happy Friday!
Thursday, June 16, 2011
June 16, 2011 - One Week Post Surgery
Taylor has has great couple of days. She is very active, smiling, wants to play and completely Oxygen free ! Her incision is healing nicely and her chest tube still draining away. Last evening we were moved to a freshly painted private room too! Doesn't get much better then that in the hospital!!!
Steps forward don't often come without a price however. Since Taylor's chest tube drainage has not significantly decreased over the last several days, tests were ordered for the second time today to see if her fluids were showing that she is leaking fat or lymph tissue. Though two days ago the test was negative, today it was overwhelmingly positive. Bummer...so what does this mean.
Well, we are still trying to understand and will have a clear picture once we see her surgeon again tomorrow morning. This is not an unusual surgical complication for the Fontan in kids. The Thoracic Lymph Duct is right in the area where surgeons have to cut through previous surgery's scar tissue to perform the procedure. Unfortunately the duct is not visible as it is very tiny. If it is nicked or stressed at all, it can leak and that is what is ocurring now.
Good news: The fact that Taylor has been eating like a horse (pizza, cheese, yogurt, guacomole, etc.) led us to see this problem. Bad news: The solution is a fat free diet in order to allow the lymph system to heal and not have to deal with processing fat at all. This should lead to a significant decrease in drainage and all will be well. Less than great news: This process is trial and error and could take quite a while (days to weeks). So in other words, we are hanging out at Fairfax for quite a while...and will keep you posted.
Please pray for a solution to this challenge and patience for me and Jason. :)
Thanks for all the yummy food from Cristen Dimas, Neeta Mehta, Kristi Latham and many others. We appreciate keeping us and the kids well cared for and well cared for.
Love to all...
Steps forward don't often come without a price however. Since Taylor's chest tube drainage has not significantly decreased over the last several days, tests were ordered for the second time today to see if her fluids were showing that she is leaking fat or lymph tissue. Though two days ago the test was negative, today it was overwhelmingly positive. Bummer...so what does this mean.
Well, we are still trying to understand and will have a clear picture once we see her surgeon again tomorrow morning. This is not an unusual surgical complication for the Fontan in kids. The Thoracic Lymph Duct is right in the area where surgeons have to cut through previous surgery's scar tissue to perform the procedure. Unfortunately the duct is not visible as it is very tiny. If it is nicked or stressed at all, it can leak and that is what is ocurring now.
Good news: The fact that Taylor has been eating like a horse (pizza, cheese, yogurt, guacomole, etc.) led us to see this problem. Bad news: The solution is a fat free diet in order to allow the lymph system to heal and not have to deal with processing fat at all. This should lead to a significant decrease in drainage and all will be well. Less than great news: This process is trial and error and could take quite a while (days to weeks). So in other words, we are hanging out at Fairfax for quite a while...and will keep you posted.
Please pray for a solution to this challenge and patience for me and Jason. :)
Thanks for all the yummy food from Cristen Dimas, Neeta Mehta, Kristi Latham and many others. We appreciate keeping us and the kids well cared for and well cared for.
Love to all...
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