July 5, 2011 - last day here!!!

Just got word that they are pulling the tube this afternoon and sending us home!!! Yippee!!

Thanks for all the prayers, meals and help.

Please pray for our new friend Parker M who is in surgery now for Tetralogy of Fallout. She is 6 weeks old. We pray for success and a speedy recovery.

July 3, 2011

Taylor's chest tube drainaage yesterday was half of what it had been the day before which is great. The plan is to watch it decline to the teens (we were at 68 yesterday) and then pull the tube and go home. Wednesday maybe...

Thanks to the Schumans and Shermans for hosting Jason, Cam and Em last evening. This afternoon I will go home and take the kids to the pool and neighborhood fireworks. Tomorrow morning I am running in the Let Freedom Ring 5K before heading back here for the evening with Taylor.

We will keep you posted!!!

July 2, 2011 - Day 23

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!!!

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!

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.

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

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.

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!

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...

June 14, 2011 5 days post Fontan

Blog post, take 2. I wrote this earlier today while Taylor was resting on my Blackberry and apparently it didn't post. Bummer...I will try to briefly recap.

The last two days Taylor has continued to heal nicely. Her incision looks great and her breathing is improving daily. Today she was able to be off of the oxygen for periods up to two hours and maintain SATS in the low to mid 90s. Wow! Her congestion is now being treated with nebulizers and she was seen by a pulmonologist today as well. He prescribed nebs every 3-4 hours for the next two days and if she is not clear at that point we will try oral steroids. After 3 treatments the improvement was very noticeable! Wonderful progress!

Taylor is eating like a champ and drinking lots of fluids which is great. Pizza, hummus, guacomole, meatballs and tortilla chips have all been on the menu. Her doctors and the nurses are very impressed. Today and yesterday she spent increasing amounts of town out of bed walking, visiting the playroom and courtyard and riding in a pink car. We have visited the helicopter viewing bridge a lot and luckily have a super view of the helipad right out our window. She LOVES to see the helicopters take off and land.

We also have moved on to changing Taylor's IV port, chest tube dressings and removing various other bandages. She has been a trooper through it all and is a favorite of the nurses and techs. :)

A few things that will keep her in the Taylor in the hospital until at least Friday.

1. Her chest tube is still draining quite a bit. The cardiologists and surgeons feel that this is due to inflammation in her chest from surgery and are going to try treating her first with Motrin and if that doesn't work to slow the drainage down, then they will move to oral steroids which should do the trick! Then the tube can be removed and she will be home free.

2. She needs to be able to maintain her SATs in the 90s consistently without oxygen. We are definitely already moving in the right direction there. It is likely that once the inflammation in her chest subsides a bit, the breathing will come easier as well.

3. Today her blood work showed that her immune globulin was low as a result of some of the protein leaking out through her chest tube. This is important to help her fight infection, which thankfully she has not shown signs of. Tonight she is receiving a slow IV infusion of IGG and then her blood will be tested again Thursday to look for improvement. Right now the doctors are being very proactive and do not feel this is a significant issue.

We have had several visitors over the last two days including Cameron and Emileigh on Sunday and Monday. Ashley has been a constant and a wonderful help with Taylor and Cam and Em. She is a godsend!!! Yesterday Babs and Nic stopped in and brought T a milkshake from McDs. Our good friend Linzy N. also visited for a quite a while. We have also seen our pastors Tom and Barbara and had a wonderful visit from Kathy Palmer as well. Taylor loves to have visitors as do Jason and I as well!

Thanks for the wonderful snacks and meals from the Tituses, Schumans, Rakestraws, Christy, Kim and Linda from OH. Not to mention parking passes, and food gift cards from our wonderful FG neighbors and colleagues at OH and Lees Corner. We have been so well cared for. Cannot THANK YOU enough!

Please continue to pray for healing for Taylor and patience for Jason and me. :) We also ask for prayers for the doctors as they care for T and all the kids on South and in PICU. Please keep one in particular in your prayers - Taylor's roommate Charlotte is 9 months old and seems to be failing to thrive. She is working hard to grow and tolerate feedings. She receives lots of love from the nurses and volunteers but we have not seen any family. Please pray for her too.

Love to you all....I am home with Cam and Em tonight and will be heading into school for a bit tomorrow then off to the hospital to relieve J in the afternoon. More from us soon...

June 12, 2011 - 3 Days Post Surgery

Wow, what a difference a day makes. I just returned home from spending Saturday night with Taylor. Jason relieved me this afternoon and brought Cameron and Emileigh and Gigi Faye to visit too! Everyone had a great time - Taylor was alert and awake, out of bed and moving. She ate meatballs and hummus (her first food besides milk and Cheetos) and visited the pediatric floor playroom and outdoor courtyard. Her day to day progress is truly AMAZING. She currently is only on oral medications and they are the same ones she was on pre-surgery. She continues to refuse pain medication which floors us...I think a little Tylenol could help a bit seeing that her chest was cut wide open 3 days ago, but she seems much more bothered by other minor aches and pains.

Here is the re-cap from Friday night and Saturday:

Jason took over for me at the hosital Friday evening and then Taylor was quickly dishcharged from the PICU to a regular room on the pediatric post-surgery floor. Her roommate is a 9 month old infant who is working hard to grow and thrive and is absolutely adorable! The nurses and staff helped Jason and Taylor settle in for the night.

When I arrived Saturday after making sure Emileigh was ready for her dance recital and watching Cameron swim in the Franklin Glen Swim Team Time Trials, Taylor and Daddy were fast asleep snuggled in the hospital bed.

We enjoyed visits from Ashley and Joanne Johnson before Jason left and then later Whitney stopped in to see us as well. Taylor showed off by getting out of bed and sitting in my lap in the room chair and also riding in a car around the floor with her portable oxygen on the back. We had a great night of TV watching and peaceful sleep until about 7 AM this morning. At that time she popped up on her own (no easy feat with a chest incision and drain!)and asked to eat meatballs!!! :) I quickly texted Jason and asked him to bring them for lunch.

This morning we moved around quite a bit and all of her systems kicked in and started to work! Great progress! She played with some toys in bed, talked a lot to me and the nurses, expressed concern when her roommate was crying, and asked to change clothes. Again, all good signs! She is still working hard to fully inflate her lungs and is on a bit of oxygen support. We are working to lower that as we move into tomorrow. The surgeon visited and said we just need to get the chest tube drain out and off the O2 and she will be ready to head out of there! I foresee this as a possibility on Wednesday!!!

We are grateful for the help with the kids that Gigi (Faye) and Papa(Ron)provided this weekend, as well as our good friends the McGortys, Rotheleders, Godoys and Hilburgers. They all made sure Cam and Em got where they needed to go and had fun with friends!!!

We are also so thankful for meals and snacks provided by the Rakestraws, Tituses, Schumans, Linda Rosen, Linda Bennett, Whitney Cook and many others...THANK YOU FOR TAKING SUCH GOOD CARE OF ALL OF US!!!

Jason will be with Taylor through early Monday afternoon. I am going to go into school tomorrow morning to catch up on a few things and attend Cameron's 2nd grade end of the year picnic before heading over to Fairfax to relieve him.

We are thankful to God for the smooth and speedy recovery Taylor is enjoying. We are praying she continues along this path and can be home very soon.

June 10, 2011 - 1 day Post Surgery

Surgery Day - June 9, 2011

T's day started at 5 AM with a surgical scrub at home, clean jammies and a trip to the Fairfax pediatric pre-op center. After riding in a Radio Flyer car to the OR, I walked her in and waited with her until she was fully sedated. The surgery took approximately 4 hours with no complications and she was tucked into the PICU by 2 PM. Shortly after that she began to wake up and her breathing tube was removed so she could begin to breathe on her own. WOW! What a different experience than her last two surgeries!!! The doctors and nurses were very, very pleaseed with her progress so early on.

Overnight she began to talk and share complaints about her arterial and central lines, the lights, the oxygen, and her pulse-ox monitor. Everything became an "owie". I stayed with her and we rested in cycles of about one hour - 30-45 minutes of sleep and then 15 minutes or so of soothing. She did great!

This morning during the surgeon's rounds they ordered her to be taken off all IV meds and to have her lines removed. She has already started on her oral medication again. Her oxygen support is minimal and will likely be removed later today along with possibly her chest tube since it is not draining much anymore. Her catheter was already removed this morning.

Jason is here now along with our amazing nanny Ashley. Yesterday we were very grateful for the visits from one of our pastors Barbara Minor, and close friends Babs and Stacey, along with Ashley. We are also so thankful for the meals we have received from Sarah Zelasko, Jen Dausch, Cathy Lahr and the Lulls. We have been overwhelmed with help and support for all of us including supervision and rides for Cameron and Emileigh to their various activities. We feel truly blessed in so many ways.

When we arrived here yesterday I found out that a friend and colleague from FCPS was also here as her daughter, also named Taylor, was undergoing heart transplant surgery. It was successful and we have been in contact via email. Please keep both Taylors in your prayers for continued strength and full recovery.

As always we are amazed by and extremely grateful to the compassionate, talented staff at INOV Fairfax.

I am going to go home tonight and sleep a bit and Jason will stay overnight here. His parents are coming to town this afternoon to help us through the weekend. It is quite possible that Taylor will be moved to the regular pediatric floor late this evening or tomorrow morning - one step closer to the door!!!

Love to all!
Amy, Jason and Taylor

June 8, 2011 - 10 PM

Surgery is in 9 hours...we head to Fairfax at 5:30 AM.

Taylor was a trooper today for pre-op: bloodwork, chest xray, EKG and visiting the pediatric surgery wing.

We are grateful for the lovely dinner provided by the Novotny family and the breakfast goodies by the Hillelsohns and Suzie Sterett. Thanks also to Denise Hollibow and family for the hospital snacks.

Love to you all...check for updates tomorrow and this weekend.

We appreciate prayers for Taylor's strength and the doctors' skill!

Surgery Date - June 9, 2011

http://en.wikipedia.org/wiki/Fontan_procedure

Taylor's Cardiac Cath went very well earlier this week as did her visit with the surgeon - though she refused to show him her chest scar, or zipper as we call it. She had been so cooperative with each nurse and doctor up to that point there was bound to be a breakdown!

June 8 we visit the hospital again for pre-op work and a tour - not so sure about that part. T will have a chest xray, bloodwork and EKG and we all can visit the surgical area. She then will go home and we will return to INOVA Fairfax early Thursday morning for surgery.

Many of you have asked how long she will be in the hospital, what the recovery will be like, etc. We don't really know. It all depends on how her body responds to the signficant increase in blood flowing through her lungs as a result of the Fontan procedure.

You can look the Fontan up on Wikipedia and get a quick, accurate overview of the surgery and the possible complications. We are praying for Taylor's continued strength, health and complication free procedure!

We will post regular updates to the blog to keep everyone posted, so please check often and share with others.

Taylor Surgery #3

May 2011 -

It has been a wonderful year and much too long since we've posted an update on Taylor. She is a bright 2 and 1/2 year old who embraces and loves life as all little ones do.

Her health has been very good and she had grown and developed into a strong, big and tough toddler! She is always busy keeping up with her older brother and sister and LOVES playing outside, swimming, dancing and MONKEYS!

We are busily preparing for the coming summer but first are getting ready for Taylor to undergo the Fontan procedure on June 9 at INOVA Fairfax hospital. She will have a cardiac catheterization on May 31 and then we will have a follow-up appointment with her surgeons on June 2 to discuss the surgery. We pray that she remains healthy and strong and is a viable candidate for this important next step.

Thanks for your ongoing support, love and prayers!