Saturday, July 31, 2010

3 years ago today...

Bobby was undergoing his 2nd open heart surgery on John's birthday! Today he is a healthy and happy 3 year old. We sure are blessed and continue to treasure each moment as a family. Bobby is down to 5 medicines (Aspirin, Lasix, Enalapril, Sildenafil, Aldactone) now, and next week he will be down to 4 as we are weaning off of the Aldactone. He has tolerated the weaning beautifully. 2.5 weeks ago we went for a chest x-ray and it was clear! We are adjusting to Charlotte and loving it! Our days have been spent at the YMCA swimming and visiting John or "Coconut" which is his camp name. Bobby attended preschool lego camp 3 weeks ago and had a blast. He did have one traumatic event when a 5 year old punched him in the mouth. I think I was more traumatized by it than him! Our latest adventure with Bobby involves potty training. And yes, it has been an adventure. He didn't start off too excited about it, but once he started earning coins for Chuckie Cheese, progress was made. He has actually been more successful at going poop, but the pee is coming along. Bobby tells everyone about Chuckie Cheese, and invites them to come along. He is quite the character. We are trying to get him trained for preschool at the YMCA, which he starts at the beginning of September.

Brogan will be in childcare at the YMCA, and then we will have a babysitter watch the kids in the afternoon until I get home. It has been a challenge finding a good sitter because no one compares to our Doris, who has watched Bobby since he was 6 months old and Brogan since he was 6 weeks old! Brogan is just about walking! He is taking about 6 steps at a time. He loves to climb, as we have found him on chairs, the toilet, boxes, etc...quite the little dare devil! He is still full of smiles, but shows signs of a little temper developing (the red hair?). He and Bobby both love playing with the dogs, especially tug of war.

Brogan's craniofacial surgery is scheduled for August 11th. The boys and I will fly out on August 9th. However, we are having some complications because neither the plastic surgeon nor the neurosurgeon accept our insurance. At this point they have submitted authorization for the surgery, but we do not have a response. We are pretty stressed to be dealing with this complication only 12 days before surgery. We can try to appeal, but if the appeal falls through we are back to square one. It is especially frustrating since the flights are booked, some fees have already been paid, and Brogan has been getting shots to build up his blood so that he does not need a blood transfusion following surgery. One possible comfort in all of this is that there is a surgeon in Virginia who has trained under the surgeon that we were planning to have. I have emailed him to get more information just in case we are placed in this situation. It could be a mess, so we are just trying to trust that God has the ultimate plan and He will lead us to it and through it.

So I guess that is the update from the Weeks' household for now. I will keep you posted on Brogan's surgery. He also has his 1st birthday coming up on the 7th of August (where does the time go!). This week we are looking forward to a visit from my parents as they should be in the air now!
Hope everything is well with you and your families!

Heart Hugs!


Monday, June 21, 2010

A Tribute to My T.C. Walker Family

6 years ago I faced one of the most difficult times in my teaching career. I was in a low-performing school with difficult children and a demanding principal. I wasn’t even sure that I wanted to continue to teach, preferring any job other than the one I was in. One of my colleagues suggested that I attend a teaching fair for Gloucester County Public Schools. My previous teaching fair experiences were quite overwhelming, but I went in order to gain the experience of interviewing. When I first sat down, I was quite intimidated by the woman interviewing me. However, we hit it off immediately and the interview went great! It turned out that she was the assistant principal of T.C. Walker Elementary School. She even walked me over to introduce me to the principal. It seemed promising, but of course I tried not to get too much hope in case it fell through. I was called for an interview a few weeks later, much to my surprise and excitement.
Although I had interviewed for several other positions, nothing could have prepared me for an interview with 6 people simultaneously! There were 4 teachers, the assistant principal, and the principal all in the same room. Honestly, other than feeling overwhelmed, I do not remember much about the day. My socks were pretty much knocked off when Dr. Thompson, the principal, called to offer me a job teaching 1st grade. Everyone said that T.C. Walker was the best school in Gloucester County, and I felt so blessed for this amazing opportunity. It seemed that God did not want to give up this teaching career just yet. I later learned that I was hired to be rescued from my current situation=)
During my second year at TCW, I was thrilled to be expecting my first child! But our world was completely shattered when we learned that our unborn son had a heart defect. At each appointment, the news grew worse and worse. The final diagnosis was Hypoplastic Left Heart Syndrome, and the options were either a 3 stage palliative procedure or a heart transplant. In our minds we were preparing for the worst, and planning months at the hospital after Bobby was born either waiting for a heart or recovering from open heart surgery. However, what kept us going was our trust in the Lord. It was because of Him that the staff members at TCW rallied around our family. They organized fundraisers to help us survive financially during this time. They leant many a shoulder to cry on and an ear to listen to. It was because of them that we knew we could face anything.
Since the plan was to travel to Philly at 36 weeks, they helped me prepare for my stay at the Ronald McDonald House. They provided me with snacks, magazines, books, and even taught me how to cross-stitch and knit. One thing was for certain, I would not be bored! Once Bobby was born, I kept them updated on his progress. They were so kind to send emails and cards, continuing to support us even while we were far away. Upon our return home, just 5 weeks later, at the beginning of April 2007, we received a warm welcome. Bobby had instantly become a Walker Wildcat! They threw a shower in his honor, spoiling him with everything a little baby needs and so much more. One thing that has remained constant throughout the years is the love of the TCW staff members for our family.
This past year, they welcomed another TCW Wildcat into their family-our new son Brogan. Again, my teammate threw an amazing party at his house to welcome our little addition. In February 2010, we were devastated to learn that Brogan would also need surgery due to his sagittal craniosynostosis. Again, the support of the TCW family was amazing. A Bunco Night Fundraiser was set up by some teachers to help us out financially again! Brogan’s pending surgery caused Bobby’s 3rd open heart surgery to be rescheduled for the spring. The TCW staff members rallied around the family, gathering money, creating snack and activity bags for the family, and adding our family to their prayer lists. The days following Bobby’s surgery were tough. But the cards, phone calls, and emails kept me going. When my mother-in-law couldn’t come up to visit, the principal offered to come in her place. Need I say more?
We were welcomed back to Virginia with open arms, dinners, and gift cards. You see, TCW is such a special family because they always seem to know what you need without asking. Although it fills my heart with sadness to have to move away from this amazing school, I feel honored to have been a part of it for 5 years. As I leave, not only do I take away precious memories that will forever be with me, but I know that I have lifelong friends. Thank you TCW family, from the bottom of my heart!

Heart Hugs!
Rachael Weeks

Sunday, May 23, 2010

August 9th

August 9th is the tentative date for Brogan's surgery. It should be confirmed within the next couple of weeks. I was quite shocked by the date because the last time I had spoken with them they were looking into July dates. My first reaction was frustration and tears because I wasn't sure how this would impact my chances of getting a teaching job. Fortunately some wonderful women at my school reminded me that God has a plan and His timing is perfect. It appears that teachers report around August 18th in North Carolina, so that should give me enough time to go to Dallas, have Brogan's surgery, and return in time to start the year (if I have a job). The benefit to surgery in August is that it gives us a solid month in Charlotte as a family to enjoy the summer and each other. Of course I am not sure what it is about my boys and surgeries, but August 9th is 2 days after Brogan's 1st birthday! Again, I am going to trust God's timing even though I don't always understand it.

Once I had digested this information, I was able to call Dallas back to discuss a few more things. My heart sunk when they shared that there is a deposit for Dr. Fearon's services, half of it due when we confirm the date and the other half due 7 days prior to surgery. I have to do some more checking into it because it may be that they have not checked with the insurance company. We have never had to pay anything upfront for a surgery, and never had any issues going to CHOP despite the fact that there are several cardiothoracic surgeons in the area. We are going to need some prayers on this one! We are putting it all into God's hands.

Today we had a wonderful message at church focused on Hebrews Chapter 10. We need to keep getting UP (draw near to God), keep talking UP (speak words of hope), and keep showing UP (gathering with our brothers and sisters in Christ). But especially we need to stay strong and know that THE BEST IS YET TO COME. My goal this week is to focus on the Word from this message. I hope you will join me!

Heart Hugs!

Wednesday, May 19, 2010

The Weeks Family Update

As of Friday, May 14, Bobby was 8 weeks post-Fontan. I can't believe that it has already been 8 weeks. Today we visited the cardiologist. It has been 1 month since our last check-up. Where does the time go? The appointment went really well. I was pleasantly surprised when they put the pulse ox monitor on Bobby and he immediately came up as 96. Not only was his blood oxygen 96%, but it stayed there without budging. I kept waiting for it to get lower, but at one point it even went up to 97%. That is almost normal! This will be about as high as Bobby will get, but it a true miracle considering he has lived in the upper 70s to lower 80s for most of his life. He wouldn't let them check his blood pressure...surprise! He has grown a bit and is now 36 inches tall, but his weight is still down 3-4 lbs. He is sitting at 27lbs, although the doctor promises that his eating will pick up. They did a quick echo to check Bobby's heart and make sure there was no fluid or inflammation. He was NOT happy about this at all. Thankfully it was quick and everything looked clear. This allowed him to come off of the Motrin. For now his diuretics and the rest of his medicine will remain the same. We will have another check-up in 6 weeks when they may start to begin weaning some of the diuretics. I am anxious for him to be weaned from these things although it is important not to move too fast and cause another pleural effusion to develop (fluid in lungs). Bobby is about ready to be potty trained, but I don't think it can happen until he is off of some of these meds. He is definitely back to his old tricks-refusing naps again which says a lot!
We have decided to use a doctor in Dallas for Brogan's surgery for sagittal synostosis. He is a wonderful doctor. We have spoken through email and over the phone and he is the best surgeon for Brogan. The surgery he performs is less invasive and more successful (meaning that a second surgery would not be needed). It appears that this surgery will occur in July, but we are still waiting for a date. So much of our summer revolves around this and we are anxious for a date. John is enjoying his new job in Charlotte, but it is terribly hard to be apart. The end of the school year can’t get here fast enough!
That is all of the news from the Weeks household for now. We have some very special prayer requests tonight: Harrison, who is having his Fontan tomorrow; Jillian, who is having stomach complications; Rhyer and Noah, who are having surgery complications; all of our friends waiting for new hearts; and Bobby to eat better.
Heart Hugs!

Friday, April 30, 2010

A New Chapter

Sorry for the lack of updates lately! I wish I could say that no news is good news, but apparently we like to keep things interesting around here. We traveled up to UVA for Bobby's cardiology check-up on the16th of April. He looked great and they did not make any changes to his medication. Brogan had ear tubes placed on April 19th. It was pretty simple compared to what we had been through! However, he decided to get his first tooth a few days later, so his sleeping and eating still are great! To top things off he developed a croupy virus and is now wheezing again and requiring breathing treatmets!

Bobby is doing quite well. He is pretty much back to himself and has turned into quite a little chatterbox. He finally has stopped waking in the middle of the night (He had been crying about boo-boos and the hospital) but still occasionally has his eyes open. The biggest frustration is his eating. He is still not eating as much as he was pre-surgery, but I understand that this is pretty common. It is just hard to see him so skinny! Last Friday he went for another cardiology check-up and everything looked great. He is being weaned from 1 medicine and when he goes back on May 19th, they will begin to wean some of the diuretics. But the most exciting news about Bobby is that he has gone potty in the big boy potty 2 times! We are hoping that this is the start of something good (although interesting timing given the 3 diurectics he is currently taking)!

On Wednesday evening I travelled up to CHOP again, but this time with Brogan. I was seeking a second opinion about his head. I did not doubt the diagnosis, but was concerned about the surgical options. Unfortunately, there is one surgery that can be performed with great success at 3 months of age. Since we are well beyond that point, the best option for Brogan would be a 2 stage surgery, called Cranial Vault Reconstruction. I can get into the specifics later, but the hardest part for me to digest right now is having another child go through 2 major surgeries...2-yikes! This is not a life-threatening condition by any means, and for that I am grateful. And once he has these surgeries, we should be able to move forward without looking back. We planned to have the surgeries at CHOP, but to make matters even more interesting, we are in the process of moving to Charlotte. John has a wonderful job opportunity to return to the YMCA, and the boys and I will join him there at the end of the school year. So basically the cranio-facial team at CHOP is working to find a cranio-facial clinic in North Carolina that is highly trained and able to take great care of Brogan without us having to be so stretched between NC and PA. Hopefully we will get more information next week that I can pass along. While I was at CHOP, they sent a geneticist in to examine Brogan and talk with me. The highlight of the day was that she said Brogan is perfectly normal (other than the sagittal craniosynostosis), and that there is no connection between Bobby's heart defect and Brogan's head. That is GOOD news! I also got to see a few of the Child Life Specialists and the Music Therapist who worked with Bobby during our stay. It was great to see some familiar faces.

Ok, I guess that is all for tonight. Thank you for keeping updated on the Weeks Family! We are always appreciative of your prayers.


Thursday, April 15, 2010


Words cannot express how wonderful it feels to be home. We knew that pleural effusions could keep us in the hospital, but since Bobby had done so well for the 1st 2 surgeries, we were hoping that it would be the case for the 3rd surgery. The first obstacle that we ran into was the 1st chest tube (blake drain). Apparently this drain does not always work well for some kids, and to complicate matters, they sent us to the step-down unit where not all of the nurses had experience/training to deal with the blake drain properly. It seems that the surgeons expected the nurses to handle the care of the tube, and that just wasn't the case. Bobby built up quite a bit of fluid in his right lung, which made him miserable. He just wanted to lay in bed and sleep. The only way we could get him up was to pull him around in the wagon. Then Bobby started getting fevers, and it appeared that his chest tube was infected. This meant antibiotics and that the frustrations with the chest tube were continuing. It appeared that the infection was improving, until he spiked another fever. Then they swabbed the site and put us on precautions since they were testing for MRSA. It was not very fun to keep Bobby quarantined in a room, but it did get us into a private room which was great since we were there for so long! Although he tested negative for anything infectious, the fluid actually started seeping out from around the chest tube site, which meant that the chest tube had to come out. This was after about 1.5 weeks of the surgeons and cardiologists going back and forth over the darn thing. Since the area was so nasty, they could not use the stitch to close the hole from the chest tube, so they had to keep it covered as to prevent air from coming into his chest and causing more problems. They decided to see if Bobby could handle the fluid without a chest tube, but that was not the case. Finally they put a new chest tube in and that really helped Bobby along. But he developed another fever because that old chest tube site was STILL infected. He had to get stronger antibiotics and we thought we were turning the corner. They also decided that he needed some IV diuretics and 2 units of blood to help him along. Fortunately, the IV lasted through the blood, but after that he couldn't keep one. His drainage from the chest tube held steady around 160 for days. Finally, last Friday, they decided to take a leap of faith. They switched to all oral medication and clamped his chest tube to see if he could manage the fluid on his own. Perhaps God sensed that we were at the end of our rope...we couldn't handle much more. We were so thankful that Bobby was able to show them he was ready to go home. They pulled the chest tube on Sunday morning, and despite a couple of minor concerns (red eyes from sleeping with them open, chest incision infection), we were able to go home on Tuesday.

Many of you know from my updates that this was not an easy road by any means. I went through a stretch of crying almost daily, hardly being able to keep my composure in front of the doctors. Seeing your child suffer day after day is HARD. To make the situation even more trying, you are surrounded by kids that have been there for months, and even kids who are in and out quicker than you. When I was at my lowest point, a friend sent me a wonderful verse about patience. It was something that I really needed to hear.

Romans 5: 3-5
We can rejoice, to when we run into problems and trials, for we know that they are good for us- they help us learn to be patient. And patience develops strength of character in us and helps us trust God more each time we use it until finally our hope and faith are strong and steady. Then when that happens we are able to hold our heads high no matter what happens and know that all is well, for we know how dearly God loves us, and we feel this warm love everywhere within us because God has given us the Holy Spirt to fill our hearts with his love.

Each day I had to remind myself that God had us at CHOP for a reason. If it wasn't time for us to leave yet, we hadn't fulfilled His purpose yet. We were able to witness 2 children, who had been waiting for months, receive a second chance at life. What an amazing experience, yet filled with so many challenges for their families. And we only saw a glimpse of what their lives had been like while they were waiting. There were families with infants and newborns who had been in the hospital for weeks, often on the ventilator, as their bodies recovered from surgery. But then there were the kids who were up and moving days after surgery and were able to go home without any hurdles! I have so much more to share about this, but I want to leave you with some cute Bobbyisms from the hospital.

*Bobby loved the wagon. It had a soothing effect on him.
*His favorite place to play was in the kitchen. He would serve tea and cook pizza in the oven.
*Bobby's favorite place to hang out was by the elevators. He would push the buttons and say hi to all of the people on the elevator when they were stopped on our floor.
*Each day we had to take several laps around the CICU. Bobby usually had something with him such as a shopping cart or little bike. He was always worried about the babies crying and we had to stand and watch until they stopped.
*He was obsessed with doors, especially the "magical doors" that only opened with the magical key. Everytime we walked by the doors, Bobby had to tell me if the doors were opened or closed, and watch when they opened or closed.
*One of the doctors gave him a stethescope to listen with. Everytime I asked him if he had a stethescope, he said, "No Mommy, that is not a stethescope, it is a listen." He would also walk around with it around his neck calling himself Dr. Bobby.
*The last technique that he tried to get people to stop messing with him was to tell them, "No thank you." He would say it over and over again, along with "It is not fair" and "I don't want any boo-boos."

I am sure that I can think of some more, but I hope that this does for now. Thank you again so much for your thoughts, prayers, and words of comfort to get us through this time. God has blessed us with many wonderful people to support us.
Tomorrow we are headed to the University of Virginia to see Bobby's cardiologist. I will keep you posted on the visit.


Tuesday, April 13, 2010


I am so excited to share with you that we are HOME! They actually decided that they were ready to kick us out of CHOP, and for that we were grateful. It was an uneventful ride home, and Bobby actually slept 3 hours during the trip. Tonight I look forward to sleeping in my own bed, without people coming in and out of the room at odd times! Bobby does have a crazy medicine schedule, so we will have to work on making that more convenient for us. He came home with 11 different prescriptions! They will wean down over time, but quite a change from the 2 that went to the hospital with. I have so much to share, but am too exhausted for now. Tomorrow I will send out a better email!

Thank you for ALL of the PRAYERS!