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!
Rachael
Saturday, July 31, 2010
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
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!
Rachael
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!
Rachael
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!
Rachael
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!
Rachael
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.
Rachael
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.
Rachael
Thursday, April 15, 2010
Bobbyisms
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.
Rachael
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.
Rachael
Tuesday, April 13, 2010
HOME
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!
Rachael
Thank you for ALL of the PRAYERS!
Rachael
Monday, April 12, 2010
Sorry!
I am so sorry for the CRAZY update last night! Bobby and I are just so anxious to get out of here.Nothing much to report right now. We visited the ophthamologist about Bobby's eyes. They are not sure why he started sleeping with his eyes open, but believe that they are red because they are getting dry from staying open so long. So we have to put lubricant in them and pray that Bobby eyes start closing while he is sleeping soon. I wonder if he started this because he is so paranoid about someone waking him up and giving him a boo boo. But that is just the opinion of Dr. Mom. The incision looks a little better today, and that won't hold us up either! So as of now, they are still planning to discharge us tomorrow!!!
But the most exciting news this morning is that a young man name Ryan, who is 18 years old, is receiving a new heart! He has been waiting for 8 months. What an incredible gift! Please keep him and the nurses and doctors operating on him today in your prayers.
Thank you for your support and prayers!
Rachael
But the most exciting news this morning is that a young man name Ryan, who is 18 years old, is receiving a new heart! He has been waiting for 8 months. What an incredible gift! Please keep him and the nurses and doctors operating on him today in your prayers.
Thank you for your support and prayers!
Rachael
Sunday, April 11, 2010
Highs and Lows
Today's Notes:
Highs...
1. Bobby's chest tube came out first thing this morning!
2. We got to walk around outside again and Bobby was so excited to be outdoors!!
3. Bobby tore through the halls of the 6th floor at CHOP. Mr. Personality seemed to be in full force and everyone was digging his hair.
4. There was talk of trying to get us out of here on Tuesday.
Lows...
1. Bobby's chest incision infection looks worse. We have to have CT surgery look at it in the morning and figure out how to help it improve. This may involve draining the puss and cleaning it out. (Yes, this will delay our departure.)
2. The last 2 days Bobby has started sleeping with his eyes open. As the day progressed, they were looking more and more red. Tonight they put some lubricant in them and plan to consult with the ophthamologist tomorrow. I wonder if this is related to the psychological trauma of this hospital stay.
3. The strong antibiotics have given Bobby a terrible diaper rash. Now they think it is yeast, so more medicine for his bottom. I am almost too depressed to list the amount of medicines he is currently on. He has been such a trooper about taking all of these!
Ok, so I know we had a lot of positives and moves forward. I really need to focus on that. But tonight it is really hard. I want to go home, so badly, and all of these nagging things are in the way. It also kills me to see Bobby going through all of these things. I need to be patient and trust God's timing, but it is easier said than done, especially during this marathon hospital stay. I also feel selfish, because we are dealing with small issues, but other kids and families are going through much worse things. It is just so frustrating because you think that there is a light at the end of the tunnel, and then wham, something is in the way of that light again. So I am hoping that venting through my writing will help me to cope and find some sense of peace about all of this. I know I keep asking, but we still REALLY need those prayers. Prayers for patience, trust, and guidance (especially for the doctors).
Also, I have mentioned that our heart friends need prayers. Tonight I ask that you pray especially for Noah. He had the same surgery as Bobby a few days ago, and now is on ECMO due to serious complications. ECMO is like a bypass machine that can be used in the ICU setting. Noah is quite a little fighter, and I would love all of us to stand behind and support him and his family.
Thank you for EVERYTHING!
Rachael
Highs...
1. Bobby's chest tube came out first thing this morning!
2. We got to walk around outside again and Bobby was so excited to be outdoors!!
3. Bobby tore through the halls of the 6th floor at CHOP. Mr. Personality seemed to be in full force and everyone was digging his hair.
4. There was talk of trying to get us out of here on Tuesday.
Lows...
1. Bobby's chest incision infection looks worse. We have to have CT surgery look at it in the morning and figure out how to help it improve. This may involve draining the puss and cleaning it out. (Yes, this will delay our departure.)
2. The last 2 days Bobby has started sleeping with his eyes open. As the day progressed, they were looking more and more red. Tonight they put some lubricant in them and plan to consult with the ophthamologist tomorrow. I wonder if this is related to the psychological trauma of this hospital stay.
3. The strong antibiotics have given Bobby a terrible diaper rash. Now they think it is yeast, so more medicine for his bottom. I am almost too depressed to list the amount of medicines he is currently on. He has been such a trooper about taking all of these!
Ok, so I know we had a lot of positives and moves forward. I really need to focus on that. But tonight it is really hard. I want to go home, so badly, and all of these nagging things are in the way. It also kills me to see Bobby going through all of these things. I need to be patient and trust God's timing, but it is easier said than done, especially during this marathon hospital stay. I also feel selfish, because we are dealing with small issues, but other kids and families are going through much worse things. It is just so frustrating because you think that there is a light at the end of the tunnel, and then wham, something is in the way of that light again. So I am hoping that venting through my writing will help me to cope and find some sense of peace about all of this. I know I keep asking, but we still REALLY need those prayers. Prayers for patience, trust, and guidance (especially for the doctors).
Also, I have mentioned that our heart friends need prayers. Tonight I ask that you pray especially for Noah. He had the same surgery as Bobby a few days ago, and now is on ECMO due to serious complications. ECMO is like a bypass machine that can be used in the ICU setting. Noah is quite a little fighter, and I would love all of us to stand behind and support him and his family.
Thank you for EVERYTHING!
Rachael
Saturday, April 10, 2010
Nothing new...
to report. Bobby had a decent night of sleep. He didn't make friends with his night nurse though since she tried to give him medicine while I was sleeping. There are some things that only I am allowed to do! His heartrate, blood pressure, and blood oxygen saturations have remained stable. This morning's chest x-ray looked a tad hazier again, but that is to be expected since he had two major changes yesterday. They do not want to pull the chest tube today because it took him so long to get to this point and they don't want to rush things. I am ok with that because the goal is to get home and stay home...not end up back in the hospital. So we have enjoyed another day of roaming the 6th floor and playing in the playroom with old and new friends. His chest incision infection is responding to the strong antibiotic. Poor Bobby though because the taste is horrible. The first time I gave it to him he threw it up! Now we mix it with cherry syrup to help him out. The two other concerns that we have are eating and drinking and diarrhea from the antibiotic. He is drinking well, but barely eating. They stay on you about this stuff too, which adds to the pressure. I feel like I am constantly giving Bobby his sippy cup to drink. Bobby's bum is so sore from constant diarrhea. They keep telling me to use this paste, but it doesn't see, to be helping at all!
On a funny note, Bobby loves his stethescope. He has to hold it whenever the doctors come into listen to him. He also carries it around his neck and calls himself Dr. Bobby. We walk over to the CICU several times a day to check on the babies and make sure that they aren't crying. He really is a sweet little boy. I know that a lot of his actions around other kids have to do with the wonderful sitter that he sees every day at home!
So, please keep praying that we are getting closer to removing the chest tube. Bobby and I want to come home...for good! Also, as always, we pray for our little heart friends who need healing!
Heart Hugs!
Rachael
On a funny note, Bobby loves his stethescope. He has to hold it whenever the doctors come into listen to him. He also carries it around his neck and calls himself Dr. Bobby. We walk over to the CICU several times a day to check on the babies and make sure that they aren't crying. He really is a sweet little boy. I know that a lot of his actions around other kids have to do with the wonderful sitter that he sees every day at home!
So, please keep praying that we are getting closer to removing the chest tube. Bobby and I want to come home...for good! Also, as always, we pray for our little heart friends who need healing!
Heart Hugs!
Rachael
Friday, April 9, 2010
A Big Jump
Last night was horrible! We found a pocket of puss on Bobby's incision sight. It looked like it was on the surface, but you have to be very careful with these things. Well, the doctors decided that a blood draw was necessary in order to make sure they treat the infection properly...unfortunately this was at midnight. Then when they were giving him the IV diuretic he started screaming that his hand hurt. Well, the new IV was bad already! So, at 1:15am, they had to put a new IV in which took until 2:00am. 5:00am was the normal chest x-ray, but thankfully they spared us the blood draw. We managed to sleep until 7:00am...what a night!
The original plan for today was to clamp the chest tube so that it wouldn't be able to drain in order to see how Bobby would handle the fluid on his own. They also wanted to up the IV diruetics to help him get rid of the extra fluid, and continue with an IV antibiotic to treat the incision sight. But as the lasix was going in through the IV, Bobby again started screaming. Our wonderful nurse spoke with the doctors about the lack of IV access for Bobby since he has had so many blood draws, but the resident and fellow insisted that he needed the IV. She then went to the attending physician who decided that if the IV couldn't be saved, we would do all oral medications. The IV team was not able to save the IV or find a new sight, so Bobby is on all oral medicine right now. These are 2 huge steps to take all at once, but would really move us forward if he can tolerate them. Today he seemed like himself, just pretty tired from the LONG night. The big test will be tomorrow morning's x-ray. The good news is that Bobby's heartrate, oxygen sats, and blood pressure have not shown any signs that he is not handling the fluid. I texted many people and appreciate your prayers because they seem to really be helping. We need those prayers to keep coming so that if it is God's will, we can go home soon! Thank you for continuing to remember our heart friends as well!
Rachael
P.S. I will try to update you about tomorrow's x-ray as soon as I can make it to the computer.
The original plan for today was to clamp the chest tube so that it wouldn't be able to drain in order to see how Bobby would handle the fluid on his own. They also wanted to up the IV diruetics to help him get rid of the extra fluid, and continue with an IV antibiotic to treat the incision sight. But as the lasix was going in through the IV, Bobby again started screaming. Our wonderful nurse spoke with the doctors about the lack of IV access for Bobby since he has had so many blood draws, but the resident and fellow insisted that he needed the IV. She then went to the attending physician who decided that if the IV couldn't be saved, we would do all oral medications. The IV team was not able to save the IV or find a new sight, so Bobby is on all oral medicine right now. These are 2 huge steps to take all at once, but would really move us forward if he can tolerate them. Today he seemed like himself, just pretty tired from the LONG night. The big test will be tomorrow morning's x-ray. The good news is that Bobby's heartrate, oxygen sats, and blood pressure have not shown any signs that he is not handling the fluid. I texted many people and appreciate your prayers because they seem to really be helping. We need those prayers to keep coming so that if it is God's will, we can go home soon! Thank you for continuing to remember our heart friends as well!
Rachael
P.S. I will try to update you about tomorrow's x-ray as soon as I can make it to the computer.
Thursday, April 8, 2010
Still working on
to get Bobby to drink, drink, drink! I really want to avoid those IV fluids, because they just seem to make him puffy. We managed to avoid them last night, but today is a little trickier since he is getting IV diuretics. The blood transfusion went well last night. He received 2 units of blood to increase his red blood cell count. It was on the normal end, but they like it to be higher in single ventricle kids. Everyone was happy with his chest x-ray. Apparently it looked a whole lot clearer! The drainage from the chest tube is slowing. They said that they may remove it tomorrow if it was low today. Right now we are hovering around the target level of 100cc (we are at 90), so I am not getting my hopes us. They would also like to start him back on oral diuretics tomorrow. I guess we will see...one day at a time. Bobby seems a lot better today. His coloring is much better and he isn't puffy. His heartrate, blood pressure, and oxygen saturations look good. I guess that is all to report for now! Keep those prayers up because they are really working. God is taking care of Bobby!!
Rachael
Rachael
Wednesday, April 7, 2010
Loss for Words
Yesterday was rough. Bobby's heartrate and blood pressure were up, he also had a slight fever. One thought that they had was that he may have fluid around his heart. They other thought was that he was in pain and/or not tolerating the fluid in his lungs. He also stopped eating and drinking so he had IV fluids all day. But there is a fine line with IV fluids and keeping it all balanced. We don't want him to hold on to the fluid, because that is what we are trying to get rid of. They also do want him to get dehydrated. It is hard to understand at times!
I felt so optomistic about the day. Bobby's numbers looked so much better-heartrate was in the 90s and oxygen saturations were 92-94. He also woke up without an IV, and the doctors said that he was fine without one as long as he kept drinking. All day I bribed him into drinking juice boxes. I told him that if he didn't want another boo-boo, he had to drink. It seemed to work well, as he drank 3 juice boxes...until they made a lier out of me. During rounds, which were really late, they decided that since his lungs looked hazier, he needed to be back on IV lasix (diuretic). His blood counts aren't great either and they are going to do a blood transfusion tonight, hoping that he will perk up. An echo revealed that his heart function is good and there is barely, if any, fluid around his heart. Well, the hard part emotionally was that he had to get blood drawn 2 times, and both times they had to stick him twice just to get it (which involved moving the needle around in his arm/hand). Then they had to do the IV, which also required 2 sticks. It was so brutal. All of his veins in his arms and hands are completely shot. He wore himself out from crying and fighting so hard. For whatever reason he wants me to do everything...he says, "mommy do it." He also started saying, "It's not fair" and he looks at me with tears in his eyes saying "I don't want any boo-boos."
The highlight of the day was our trip outside. Bobby insisted on taking the shopping cart outside. It was so cute to see him pushing it around on the sidewalk. He was happy to go up and down the elevators, but flipped out when he got back to the sixth floor.
OK, that is the update for today. We sure could use those prayers!
Rachael
I felt so optomistic about the day. Bobby's numbers looked so much better-heartrate was in the 90s and oxygen saturations were 92-94. He also woke up without an IV, and the doctors said that he was fine without one as long as he kept drinking. All day I bribed him into drinking juice boxes. I told him that if he didn't want another boo-boo, he had to drink. It seemed to work well, as he drank 3 juice boxes...until they made a lier out of me. During rounds, which were really late, they decided that since his lungs looked hazier, he needed to be back on IV lasix (diuretic). His blood counts aren't great either and they are going to do a blood transfusion tonight, hoping that he will perk up. An echo revealed that his heart function is good and there is barely, if any, fluid around his heart. Well, the hard part emotionally was that he had to get blood drawn 2 times, and both times they had to stick him twice just to get it (which involved moving the needle around in his arm/hand). Then they had to do the IV, which also required 2 sticks. It was so brutal. All of his veins in his arms and hands are completely shot. He wore himself out from crying and fighting so hard. For whatever reason he wants me to do everything...he says, "mommy do it." He also started saying, "It's not fair" and he looks at me with tears in his eyes saying "I don't want any boo-boos."
The highlight of the day was our trip outside. Bobby insisted on taking the shopping cart outside. It was so cute to see him pushing it around on the sidewalk. He was happy to go up and down the elevators, but flipped out when he got back to the sixth floor.
OK, that is the update for today. We sure could use those prayers!
Rachael
Tuesday, April 6, 2010
Are we having fun yet?
Yesterday was a long and emotional day. Bobby was up and about, but he just didn't seem "right" to me. His heartrate was elevated and once we hit the afternoon he just stopped drinking. I thought that maybe it was the old chest tube site, that maybe the antibiotic wasn't strong enough. But his total count for drainage was 185cc, so we went up for the day and now I wonder if that extra fluid was the problem. Due to monthly and weekly changes of doctors, we are on a new set now, which is frustrating as well. We used to have Bobby's primary cardiologist in charge and she is such a wonderful advocate for him, plus she knows him. I was also concerned because his weight went from 13.8 to 14.1, which means he is retaining fluid around his body again. My biggest problem is that I get so emotional and can't keep my composure! Then I get angry that I am not being patient when there are so many others around here who have been here longer and are going through even worse times.
On a positive note, Bobby had music therapy and a visit from a guitar player later in the afternoon who sang songs with the kids. This is the same guitarist who played in the CICU when Bobby was firstborn. Bobby loved it! We are also at the start of a fresh new day. We have to stay positivie that we will move forward and remember that this is all in God's timing. We don't want to take Bobby home if he is not ready and maybe there are some families around here that we need to help before we can leave.
Again, your prayers and thoughts are always appreciated! (Especially for our heart friends).
Rachael
On a positive note, Bobby had music therapy and a visit from a guitar player later in the afternoon who sang songs with the kids. This is the same guitarist who played in the CICU when Bobby was firstborn. Bobby loved it! We are also at the start of a fresh new day. We have to stay positivie that we will move forward and remember that this is all in God's timing. We don't want to take Bobby home if he is not ready and maybe there are some families around here that we need to help before we can leave.
Again, your prayers and thoughts are always appreciated! (Especially for our heart friends).
Rachael
Monday, April 5, 2010
Quick Update
Bobby had a good day yesterday despite a low-grade fever. When I went to change the dressing on his old chest tube site, this green mucas plug looking thing pulled off with the gauze. His heartrate was also elevated from the fever, leading them to believe that the site is still infected. There was a miscommunication in terms of starting antibiotics, but when Bobby spiked a higher fever, an antibiotic was immediately started. We seem to be in a holding pattern with the drainage. The total count yesterday was 160cc. Even though it is frustrating, at least we are staying the same and not getting worse.
I hope everyone had a wonderful Easter! Such an amazing day that we can celebrate a new beginning because Jesus sacrificed his life for us. Seeing how much Bobby has been through during the last couple of days has really put this all into perspective for me. I can't imagine how Mary felt watching her son suffer so and eventually give his life. What Bobby has been through isn't even close to what Jesus went through leading up to and during his crucifiction, so if Mary could be so strong, than I can be too. She is my inspiration!
We are forever grateful for your thoughts and prayers for Bobby and our family!
Rachael
I hope everyone had a wonderful Easter! Such an amazing day that we can celebrate a new beginning because Jesus sacrificed his life for us. Seeing how much Bobby has been through during the last couple of days has really put this all into perspective for me. I can't imagine how Mary felt watching her son suffer so and eventually give his life. What Bobby has been through isn't even close to what Jesus went through leading up to and during his crucifiction, so if Mary could be so strong, than I can be too. She is my inspiration!
We are forever grateful for your thoughts and prayers for Bobby and our family!
Rachael
Saturday, April 3, 2010
Philly News
Sorry for the delay in updating! Yesterday was a busy day. Bobby didn't start off on the best foot, but as the day went on he seemed to show more signs of getting back to his old self. My mom was due to fly out and Brogan and the rest of the family come up to see us in Philly. Unfortunately Brogan has a double ear infection, so it is just Bobby and I this weekend. I ran to the RMD House to check-out, but it took 1 hour each way to get to and from it because of the holiday weekend traffic! Bobby was so excited to move around that he walked the halls most of the day and fell soundly asleep at 6:00pm.
Despite a grumpy start this morning (Bobby dislikes any doctor or nurse now and says, "I don't want a boo-boo," anytime anyone walks into the room), we had a really nice day. We walked around a bit, played in the playroom, and hung out in our room. I was able to convince him to eat some goldfish crackers, pita bread, and pizza. The trickiest part has been getting him to drink. His sodium is low from the diuretics, so they would like him to drink anything but water. Guess what...all he wants to drink is water!? It is so unusual because he rarely asks for just water at home. Tonight they are starting him on oral diuretics. I am praying so hard that he responds well because that would be a great step forward. Here is where we are on the chest tube: Thursday-new chest tube 160cc came out during the procedure, Friday-Maybe 130 more cc came out and the nothing for about 8 hours, Saturday AM-Tube flushed and once we started moving around he has drained 150cc. However, when they tried to flush it this PM, they say that it may be blocked again! It was the cardiology fellow and resident who were working on it. They called cardiac surgery to see what to do, who said to continue working on it. This chest tube has been such a pain! To make matters more frustrating, I am not sure that it is being flushed as often as it should. Fortunately Bobby's cardiologist is the attending for the unit so she put orders in to have it flushed more. We will see what happens. Of course we would love him to no longer need it, but don't want it to be pulled prematurely and have another one put back in.
Well, I guess that is all of the update I have for now! From what I have heard, Kariem is doing well with his new heart and anxious to get to the step-down unit by all of his friends. A few other heart families could use your prayers as always...there are so many people going through tough battles around here.
Talk to you soon!!
Rachael
Despite a grumpy start this morning (Bobby dislikes any doctor or nurse now and says, "I don't want a boo-boo," anytime anyone walks into the room), we had a really nice day. We walked around a bit, played in the playroom, and hung out in our room. I was able to convince him to eat some goldfish crackers, pita bread, and pizza. The trickiest part has been getting him to drink. His sodium is low from the diuretics, so they would like him to drink anything but water. Guess what...all he wants to drink is water!? It is so unusual because he rarely asks for just water at home. Tonight they are starting him on oral diuretics. I am praying so hard that he responds well because that would be a great step forward. Here is where we are on the chest tube: Thursday-new chest tube 160cc came out during the procedure, Friday-Maybe 130 more cc came out and the nothing for about 8 hours, Saturday AM-Tube flushed and once we started moving around he has drained 150cc. However, when they tried to flush it this PM, they say that it may be blocked again! It was the cardiology fellow and resident who were working on it. They called cardiac surgery to see what to do, who said to continue working on it. This chest tube has been such a pain! To make matters more frustrating, I am not sure that it is being flushed as often as it should. Fortunately Bobby's cardiologist is the attending for the unit so she put orders in to have it flushed more. We will see what happens. Of course we would love him to no longer need it, but don't want it to be pulled prematurely and have another one put back in.
Well, I guess that is all of the update I have for now! From what I have heard, Kariem is doing well with his new heart and anxious to get to the step-down unit by all of his friends. A few other heart families could use your prayers as always...there are so many people going through tough battles around here.
Talk to you soon!!
Rachael
Thursday, April 1, 2010
New Chest Tube
Bobby finally got a new chest tube today around 10:00am. He seems much more comfortable now that the fluid is being drained. This tube seems better at dealing with the clots too...thank goodness! There was some concern over the color of the fluid, but now that they see it draining they are not as worried. Bobby seems more upbeat today, although still recovering from the anesthesia. He has also had some morphine since the tube is painful. They plan to do a chest x-ray later because the lung did not inflate as well as they would have liked once they removed the fluid. I just hope and pray that Bobby can get better now that he is feeling better. I will share more news as I hear it...
Rachael
P.S. Thank you for all of your prayers today!
Rachael
P.S. Thank you for all of your prayers today!
Wednesday, March 31, 2010
Feels Like...
we are going in circles! Bobby had a horrible night. He was feverish and tossing and turning. When he woke up he was gagging and appeared miserable. The chest tube site was draining fluid that should have been coming out of the tube, so they decided it was time for the tube to come out and see if Bobby could hold his own. I was hoping for a miraculous recovery after the chest tube came out. Instead, I felt like we were back to the stages shortly after surgery. Bobby was lethargic, pale, and feverish the whole day. He even started vomiting again. The x-ray does not show much fluid, but the cardiologists wonder if it is deceiving since he was acting so poorly all day. He is not allowed any food or drink after midnight (won't be hard since he didn't eat or drink all day), and they will x-ray him again in the morning and make their decision. Unless a miracle happens (which we all know is possible), Bobby will have a smaller chest tube inserted to help drain the fluid. It is hard to take this dramatic step back, but it does seem like it is a long time coming. I hope and pray that this will help us move forward with Bobby's recovery. Bobby is in God's hands! Sorry for the delay in updates, but it was hard to access the computer today. Hopefully I can get to the computer more tomorrow!
Rachael
Rachael
Quarantine Lifted
Yesterday was a LONG day! The doctors decided that Bobby should not ride in the wagon, even with a yellow gown, until the MRSA results came back. Have you ever tried keeping a 3 year old in 1 room for a whole day? I wouldn't recommend it! Bobby is also much more like himself, meaning that it was that much harder to keep him occupied. Around 7:30pm, we finally got the word that Bobby did not have MRSA and the quarantine was lifted. Even more exciting was that a little boy that we met on the floor who has been here for 10 months waiting for a heart, finally got another chance at life! He received his new heart last night. So wonderful! Once the ban was lifted, Bobby RAN around the 6th floor. He was so excited to be out of the room. Unfortunately, it was very hard for him to settle down so he didn't get much sleep. Hopefully the day will go by more quickly since we can be out and about. The chest x-ray this morning revealed that there is some more fluid, so we have to keep him moving and help him get rid of it. That is all we know for now! Specific prayers-that this fluid goes away and doesn't come back and that Kariem does well with his new heart.
Rachael
Rachael
Sunday, March 28, 2010
The Neverending Day
Around bedtime Bobby's blood oxygen saturations sank to the upper 70s/low 80s. This was not good. So I paged the nurse and she called the doctor. The decided to do a chest x-ray and found that the pleural effusion (fluid around the lung) was back. Unfortunately, the chest tube stopped draining again so the fluid could not get out of the body. They worked on the chest tube again last night and this morning and it appears to be draining a lot better. Even if they put a new chest tube in, they are so small that the same blockage could continue to form. Even more frustrating is that the medicine that they have given him to stop the fluid from forming has not helped. We will see what the plan is for today. The good news is that despite the MRSA concern, they want him riding in the wagon to move that fluid. So we won't be so stuck. Also, our primary cardiologist is the attending physician this week in the Cardiac Care Unit! Keep those prayers up...we really need them!
Rachael
Rachael
Saturday, March 27, 2010
Urgent Prayers Please
After a good night's rest, we woke to a bit of a mess. Bobby seemed off this morning. They said his chest x-ray looked a little hazier than the day before (more fluid there). He also had a higher heartrate and lower oxygen saturations. We thought it was from the fluid in the lungs, and it may be. However, he was not as perky today and took a 2 hour nap. Bobby doesn't take naps so it was quite a concern that he was taking one. When he woke up his heartrate was high and he had a temperature. They had more blood taken which is so hard because they are running out of places to stick him. Then they had to swab his chest tube site for MERSA, a resistant staff infection. We have to be confined for 2 days until the culture comes back, and therefore moved to a private room. Just to clarify, we have been in the step-down unit since last Sunday. However, we have been in a shared room and they want to move us to a private room for other patients' saftey. The nurses and doctors now have to wear gowns and gloves when they enter the room. They have just started a stronger antibiotic and later tonight they will start another medication to draw fluid out of Bobby's lungs since he still seems to be retaining quite a bit. The best thing would be to get that chest tube out but they won't do it until they feel more comfortable that he doesn't need it to help draw fluid out. Please pray for us as we try to get all of this figured out and get Bobby on the mend. Although we love CHOP, we don't want an extended stay!!
Rachael
Rachael
Friday, March 26, 2010
A Roller Coaster Day
We woke up to an extremely puffy Bobby. They had tried to start him on oral diuretics, but it didn't work well at all. Bobby looked like he was in a fight and seemed to feel that way too. We had a little scare in the middle of the night when the bulb at the end of his chest tube came off. There was concern that air may have gotten into the chest, but after a chest x-ray at 2:00am, they felt that everything looked good. The physician's assistant who saw Bobby in the morning noticed another clot at the top of the tube. I was pretty discouraged and tired of this darn chest tube. But as the day went on things started looking up. Bobby responded really well to the IV diuretics and looks much less puffy tonight. We spent most of the day in the playroom and Bobby seemed a little more energetic than the day before. The chest tube drainage has slowed considerably (Wed.-800mL drained, Thurs.-250mL drained, Fri-60mL so far). The goal is 100mL or less for 2 days and then the tube can come out. So, we are staying here for the weekend at least. Bobby also has to prove that he can handle oral diuretics before he can go home. We are not sure when they will attempt then again. But to put it in perspective he checked in at 13.4kg. At his highest he was 15.2kg (+4lbs) and today he was at 14.9kg. Extra fluid can make the heart work harder, which is why it is so important to get rid of it. He has also developed a rash that seems to be spreading and may be an allergy to one of the mediciations he is on (but he is on quite a few so it is hard to determine). But the best news of the night is that Bobby found his legs again! Tonight he did laps around the 6th floor. The nurses in the CICU were delighted to see him up and about...such a difference from a week ago. However, trying to keep this 3 year old happy and contained is gonna be difficult. He was already throwing tantrums when he couldn't go down the elevator!
I guess that is the update for now. Specific prayers we need are to stop draining from the chest tube, loss of extra fluid from diuretics, healed chest tube sight, and determining the cause for the rash. Thanks so much!
Rachael
I guess that is the update for now. Specific prayers we need are to stop draining from the chest tube, loss of extra fluid from diuretics, healed chest tube sight, and determining the cause for the rash. Thanks so much!
Rachael
Thursday, March 25, 2010
Little kinks...
Bobby had a great day! Can you believe that he was actually up and about in the playroom. You can tell he is not 100% yet, but boy has he come a long way. Tonight he is STILL draining fluid, which is the main thing that keeps us here. Also, the site of the chest tube has developed an infection. It is very red, sore, and puss is coming out of it. So, they started him on an antibiotic. They still have to "strip" it every several hours to keep it draining and I can only imagine how painful this is for Bobby. Also, the stickers from the leads that keep his heart monitored have torn up his skin. His chest looks so sore! He is developing more of an appetite, but it seems to hurt him when he swallows. I am not sure if this is from the surgery or if his reflux is coming back. So, these are the continued little obstacles that we face We appreciate your willingness to keep us uplifted in prayer.
Rachael
Rachael
Yesterday the chest tube continued to drain and drain! You could tell it made a huge difference for Bobby. He no longer requires oxygen and his blood oxygen saturations are now between 92-95% all on his own! It is so exciting to see. He is struggling with pain so we are still trying to manage it better. He will feel even better once they can remove the chest tube. This will happen once he stops draining fluid and will bring us even closer to getting out of here. But for right now we are just happy that he is feeling better. He woke up at 4:30 this morning ready to play in the playroom and eat pizza. He really is only playing a little, but that is a huge change from not even wanting to look at a toy. So today we pray for the drainage to slow, better pain management, and continued loss of fluid (he looks a little puffy). Thank you again for all you do! Praise God for his blessings.
Rachael
P.S. The chest x-ray looked great this morning...so much better than yesterday!
Rachael
P.S. The chest x-ray looked great this morning...so much better than yesterday!
Wednesday, March 24, 2010
Progress!!
Bobby had a restful night, which is great. The debate continued this morning between the surgeons and the cardiologist. Then 2 of the surgical physician's assistants came up to work on the clot. Wonderfully, they were able to break up the clot and since then the fluid has started flowing. What a blessing! We have been pulling Bobby around in the wagon to help drain the fluid. Since the fluid has started draining he has needed less pain medicine, has been drinking, and even requested food. Most importantly, he has showed us signs of the Bobby we know and love. It warms my heart to see my Bobby coming back. So the plan is to keep it draining, and get another chest x-ray later on to see if the effusion is getting small, or if fluid will continue to form meaning the effusion is not drying up. They are also thinking about putting him on a medicine to open up the blood vessels in the lungs and reduce the lung pressure which would help prevent effusions from forming. We will see what they decide. Hopefully we can get Bobby to the playroom for art therapy today! THank you so much for your prayers. Isn't God amazing!!
Rachael
Rachael
Tuesday, March 23, 2010
Stuck in the cycle
The goal is to get Bobby up and moving. In order to do so he needs to get his pain under control. In order to get his pain under control he needs food to keep his tummy happy. (He was sick again last night) This process has FAILED! We cannot get Bobby comfortable nor up and around to move the fluid. To top it all off, his chest tube keeps getting blood clots and therefore does not drain adequately. They also have given him diuretics around the clock which he has not responded to. The cardiologists think he needs a new chest tube, but the surgeons disagree. So, the plan is to stop his food and drink intake tonight, get a chest xray in the morning, and see if there is any change in his fluid around the lungs. Then they need to again talk with the surgeon to see if they will replace his chest tube. It appears we are headed in direction of a replacement of the tube, but that is just the mother's opinion. It would be a step backwards, but sometimes this is necessary to move forwards. At this point we need to do something different because the approach today of wait and see did not work. Of course, the procedure to change the tube would require sedation and has risks, so our prayers continue. Hopefully we will make more progress tomorrow! Thank you for your kind words and thoughts and prayers!
Rachael
Rachael
Monday, March 22, 2010
2 posts in 1
Current:
We gave Bobby morphine last night to help him get more relaxed and comfortable. It really seemed to help him through the night and he even had a small breakthrough where he seemed like himself. However, they are trying to wean him off of it and onto oxycodone. We tried to give him tylenol to take the edge off the pain so that he could eat and then we could give him the oxy. That plan failed because his pain got really intense again. Finally, we gave him the oxy around 1 hour ago in hopes that it would ease his pain and that he would keep it down. Now he seems to be resting more comfortably.
Bobby has developed a fairly large pleural effusion, which is a collection of fluid around the lungs. There is also a clot in his chest tube which is holding up some of the fluid in his body. They have given him 2 diuretics to help him get rid of some of this fluid. The surgeon's physician's assistant keeps working on dislodging the clot. Our goal is to get him up and moving to help these things along as well. If he is up and about, that is the best thing for him. There is a music therapy session scheduled at 2:00 and we are working towards that. Most of you know how much Bobby loves music, so we hope and pray that it is enough to help convince him to go. Thank you for the continued prayers...
Last night:
Bobby threw up around 3:45 am last night. We though he was headed in the right direction since he was taking in some fluids and we made it to step-down. His biggest problem seemed to be gas and needing to go to the bathroom. About 5 minutes after we got into stepdown, he finally pooped and then threw up again (4:30pm). He just is not happy and not feeling well at all. It is so hard! So, we are continuing to work on his pace. He still has a very little amount of oxygen, IV fluids, and his chest tube. The good news is that things are starting to slow down as far as drainige, so it may come out tomorrow. He does have a small right pleural effusion, so he is on diuretics to reduce it. We really need your prayers tonight!!
We gave Bobby morphine last night to help him get more relaxed and comfortable. It really seemed to help him through the night and he even had a small breakthrough where he seemed like himself. However, they are trying to wean him off of it and onto oxycodone. We tried to give him tylenol to take the edge off the pain so that he could eat and then we could give him the oxy. That plan failed because his pain got really intense again. Finally, we gave him the oxy around 1 hour ago in hopes that it would ease his pain and that he would keep it down. Now he seems to be resting more comfortably.
Bobby has developed a fairly large pleural effusion, which is a collection of fluid around the lungs. There is also a clot in his chest tube which is holding up some of the fluid in his body. They have given him 2 diuretics to help him get rid of some of this fluid. The surgeon's physician's assistant keeps working on dislodging the clot. Our goal is to get him up and moving to help these things along as well. If he is up and about, that is the best thing for him. There is a music therapy session scheduled at 2:00 and we are working towards that. Most of you know how much Bobby loves music, so we hope and pray that it is enough to help convince him to go. Thank you for the continued prayers...
Last night:
Bobby threw up around 3:45 am last night. We though he was headed in the right direction since he was taking in some fluids and we made it to step-down. His biggest problem seemed to be gas and needing to go to the bathroom. About 5 minutes after we got into stepdown, he finally pooped and then threw up again (4:30pm). He just is not happy and not feeling well at all. It is so hard! So, we are continuing to work on his pace. He still has a very little amount of oxygen, IV fluids, and his chest tube. The good news is that things are starting to slow down as far as drainige, so it may come out tomorrow. He does have a small right pleural effusion, so he is on diuretics to reduce it. We really need your prayers tonight!!
Saturday, March 20, 2010
Bumps in the Road
We are still in the CICU tonight...There were no beds in the CCU. However, it was a blessing in disguise. This afternoon Bobby seemed really uncomfortable. His blood pressure and heart rate were elevated. They gave him more meds but he threw up and that seemed to help. We tried more drinks but he threw them up too. Tonight we have a nurse who has 20 years experience and she explained that this is so typical of post-Fontan kids. Bobby's cardiologist called later to check on him and said the exact same thing. Even though it is typical, it is still difficult! Apparently the lower part of the body has difficulty adjusting to the new blood flow and becomes very unsettled. So, right now we are praying for a restful night and a better day tomorrow. He is back on IV fluids and has been given Zofran to help his tummy. Thanks for keeping up on Bobby!!
Rachael
Rachael
Bobby's News
Bobby had a great night! He has already had all of his lines removed. The only things that remain are a chest tube, nasal cannula (oxygen), and 1 IV! They would like to send us to step-down later on today. He has been so tough through all of this! We are SO proud of him and grateful for God's hands on him. He has tried to get up 2 times and kind of freaked out me and the nurses. But now he is calm and resting. Thank you for your continued prayers...
Rachael
Rachael
Friday, March 19, 2010
Tonight's update
Bobby is doing ok. His blood pressure seems a little better so the machine isn't beeping so much anymore. He is, however, very restless and asking for a drink and to be held. It is so hard to feel so helpless! He seems a little uncomfortable, despite some pain mediciation, and keeps moaning/whimpering. Since we have a private room I plan to sleep right by his side...that is if I sleep! We are praying that Bobby gets some peaceful rest and remains stable. Thanks for sticking with us through the long day!!
Rachael
Rachael
He is done!
Bobby is done and back in the CICU. The surgeon said that everything went well. We hope to see Bobby around 5:00. We are in a private room so that 1 person can always sleep in the room with him. We can even use the bathroom and shower! THank you for your love, support, and prayers today. I will keep you updated as able!
Rachael
Rachael
Update #1
They took Bobby back shortly after 1:00pm. We was in good spirits and did not seem too phased without being able to eat or drink. Thank goodness for the playroom which kept him occupied!! They had given him versed, but he was still excited to go down the hallway and push the buttons for the elevators. We spoke with the nurse about 10 minutes ago. She said that he went to sleep nicely. Dr. Spray did not have any trouble getting in, and he was just being put on bypass. Thank you for keeping everyone in your prayers. We know he is in the best hands-God's hands!
Rachael
Rachael
Change of Plans
A critical baby came in last night so we have been bumped to a later time. We need to arrive at CHOP at 8:30am. It was nice to sleep in until 6:00 instead of getting up at 4:00! Continuing to trust in God's plan for all of this...
Rachael
Rachael
Thursday, March 18, 2010
Tomorrow
We will be at the hospital at 5:30 am. Bobby has an MRI prior to surgery to study brain development in heart kids versus normal kids. Surgery should start around 8:00am and last for 3.5 hours. I will update as we receive information. Thank you for your kind words, thoughts, and especially prayers!
Tuesday, March 16, 2010
Happy 3rd Birthday Bobby!!
March 16 , 2010
Dear Bobby,
Three years ago I was in the midst of trying to push you out, but you just wouldn’t cooperate. Daddy had just arrived after driving 10 hours through a snowstorm to get to us. It seems hard to imagine that so much time has passed. And here you are, turning into a little boy right before our very eyes. This year has been a year of big accomplishments for you. It was your first year without ANY surgeries. We expect that we have many more surgery-free years!
Even more exciting is that your love of reading has turned into a love of learning. You already know all of your letters, numbers, colors, and shapes. Right now you are working on mastering your letter sounds. You know more than some of the students that I teach, and what makes it so special is that it is all on you. You are the one who works hard to learn these things. But actually it doesn’t take you too much time to learn anything. Many times you seem to catch on after only one or two tries. This has also made life interesting on a day-to-day basis. It seems that if we do something with you one time, you expect to do it every time. Last fall I stopped by the park on an unusually warm day on our way home from work. Well, for the next few months you insisted on going to the park every time we came home from work and got really upset when that just wasn’t possible. This past Christmas you loved going through the light show! You would say, “Oh, pretty!” and want to see the lights every night. It was also hysterical watching you get so set on opening presents during Christmas. You were ready to celebrate Christmas every day by opening presents even though we didn’t have any around. Right now you are really into lollipops and pez candy. We use them as a distraction in the car and stores, when you don’t like to be seated for too long! You love to be on the go all of the time, whether it be to go on walks, shopping, or to your friends’ houses.
This August you became a big brother to Brogan. Although you were a little jealous at first and wanting my attention, it didn’t take you too long to get over it. Now you are a doting big brother. You look out for Brogan at Doris’ house and let her know whenever he is crying. You even make sure that we know when Brogan needs a bottle, binky, or blanket. You love to play with him, lay on top of him, and make him laugh. It is so obvious in his eyes how much he adores you. I love how the two of you play off of each other.
The most exciting thing for me this year has been your language development. I am not sure where you come up with half of the things you say, but you have me in stitches so much of the time. Just today you told me that I was old! And you love to push buttons, but when you first started asking us to push them you would say, “Push the butt, Mommy.” You also love to talk on the phone and imitate everything I say. You are quite the character, Bobby Weeks!
You are so special to so many people. I think that anyone who has been lucky to meet you is drawn to your charisma and will always remember you. Maybe I am biased, but that is my job. You just had an amazing birthday party at Airheads. 13 of your friends and their parents, Grammy, Jamie, Doris, Brogan, Mommy, and Daddy were there to celebrate. You had so much fun jumping, running around, playing with the trains and legos, that you didn’t even want to stop to eat or open presents. Today on your birthday you were ready to go back to your birthday party. You insisted on wearing your Blues Clues pajamas and cried when we didn’t stop at Airheads on our way to work. “My party,” you cried and even through your Leapfrog game at me! On our way home from work you told me that we were almost there, close to the party.
Bobby Weeks, it is such a joy and honor to be your mother. You have taught me how to live life to the fullest. But even more importantly, you have taught me how to be strong and stay focused on the most important things in life. I love you so much and would do anything and everything for you. One thing that has me a little down today is that we have your 3rd open heart surgery hanging over our heads. It is set for this Friday, March 19th. Can you believe that it is 3 years to the date of your first open heart surgery? God definitely is taking care of you and we have completely placed you in His hands! We know that He will guide the surgeons, doctors, and nurses taking care of you. We also know that He has given you a fighting spirit to help you get through this.
Happy 3rd birthday, Bobby! We can wait to celebrate the next birthday!
Love,
Mommy
Dear Bobby,
Three years ago I was in the midst of trying to push you out, but you just wouldn’t cooperate. Daddy had just arrived after driving 10 hours through a snowstorm to get to us. It seems hard to imagine that so much time has passed. And here you are, turning into a little boy right before our very eyes. This year has been a year of big accomplishments for you. It was your first year without ANY surgeries. We expect that we have many more surgery-free years!
Even more exciting is that your love of reading has turned into a love of learning. You already know all of your letters, numbers, colors, and shapes. Right now you are working on mastering your letter sounds. You know more than some of the students that I teach, and what makes it so special is that it is all on you. You are the one who works hard to learn these things. But actually it doesn’t take you too much time to learn anything. Many times you seem to catch on after only one or two tries. This has also made life interesting on a day-to-day basis. It seems that if we do something with you one time, you expect to do it every time. Last fall I stopped by the park on an unusually warm day on our way home from work. Well, for the next few months you insisted on going to the park every time we came home from work and got really upset when that just wasn’t possible. This past Christmas you loved going through the light show! You would say, “Oh, pretty!” and want to see the lights every night. It was also hysterical watching you get so set on opening presents during Christmas. You were ready to celebrate Christmas every day by opening presents even though we didn’t have any around. Right now you are really into lollipops and pez candy. We use them as a distraction in the car and stores, when you don’t like to be seated for too long! You love to be on the go all of the time, whether it be to go on walks, shopping, or to your friends’ houses.
This August you became a big brother to Brogan. Although you were a little jealous at first and wanting my attention, it didn’t take you too long to get over it. Now you are a doting big brother. You look out for Brogan at Doris’ house and let her know whenever he is crying. You even make sure that we know when Brogan needs a bottle, binky, or blanket. You love to play with him, lay on top of him, and make him laugh. It is so obvious in his eyes how much he adores you. I love how the two of you play off of each other.
The most exciting thing for me this year has been your language development. I am not sure where you come up with half of the things you say, but you have me in stitches so much of the time. Just today you told me that I was old! And you love to push buttons, but when you first started asking us to push them you would say, “Push the butt, Mommy.” You also love to talk on the phone and imitate everything I say. You are quite the character, Bobby Weeks!
You are so special to so many people. I think that anyone who has been lucky to meet you is drawn to your charisma and will always remember you. Maybe I am biased, but that is my job. You just had an amazing birthday party at Airheads. 13 of your friends and their parents, Grammy, Jamie, Doris, Brogan, Mommy, and Daddy were there to celebrate. You had so much fun jumping, running around, playing with the trains and legos, that you didn’t even want to stop to eat or open presents. Today on your birthday you were ready to go back to your birthday party. You insisted on wearing your Blues Clues pajamas and cried when we didn’t stop at Airheads on our way to work. “My party,” you cried and even through your Leapfrog game at me! On our way home from work you told me that we were almost there, close to the party.
Bobby Weeks, it is such a joy and honor to be your mother. You have taught me how to live life to the fullest. But even more importantly, you have taught me how to be strong and stay focused on the most important things in life. I love you so much and would do anything and everything for you. One thing that has me a little down today is that we have your 3rd open heart surgery hanging over our heads. It is set for this Friday, March 19th. Can you believe that it is 3 years to the date of your first open heart surgery? God definitely is taking care of you and we have completely placed you in His hands! We know that He will guide the surgeons, doctors, and nurses taking care of you. We also know that He has given you a fighting spirit to help you get through this.
Happy 3rd birthday, Bobby! We can wait to celebrate the next birthday!
Love,
Mommy
Tuesday, March 9, 2010
March 19, 2010
Bobby will be having his 3rd open heart surgery. This is exactly 3 years to the day of his first open heart surgery on March 19, 2007. We know it is coming up way too quickly, but trust that God's timing is perfect. Today Bobby had an echo and cardiologist visit. Tomorrow he is scheduled for a pre-op visit and MRI. I will share more when we get home. Thanks for adding Bobby to your prayer list!! This is scary for him and hard on us. Heart Hugs!
Tuesday, February 16, 2010
Keeping Life Interesting...
Just a short little message to ask for some prayers...
Bobby and Brogan have been fighting a nasty bug that gave them severe ear infections and colds, and has also affected Brogan's lungs. He has been on nebulizer treatments, but that didn't do the trick so he just started steroids today. We pray that they are on the mend soon. On Saturday, the pediatrician mentioned that he is concerned about Brogan's head. He is worried that the skull sutures are fusing too early (craniosynostosis). On Monday we have an appointment with a plastic surgeon. These are the same guys we had to see for Bobby's head, although we know his problems were more to due with his traumatic delivery. I am not going to lie, the thought of head surgery for Brogan makes me sick! My first thought was why us? Don't we have enough to deal with since Bobby has had 2 open heart surgeries and a third one slated for the summer? I was angry and bitter and feeling sorry for myself and our family. After prayer and reflection, I am working on a change of heart. We are a strong family, and with God on our side we can conquer everything! We are just going to take this one day at a time, and if it comes to surgery for Brogan, ultimately he is in God's hands and we will be there comforting him and helping him fight through. So, if you could just add these prayers to your lists, we would feel honored. If we do indeed have another battle in our future, we need your support along with our Heavenly Father's to get us through. Feel free to pass this along...any and all prayer chains are blessings.
Heart Hugs!
Rachael
Bobby and Brogan have been fighting a nasty bug that gave them severe ear infections and colds, and has also affected Brogan's lungs. He has been on nebulizer treatments, but that didn't do the trick so he just started steroids today. We pray that they are on the mend soon. On Saturday, the pediatrician mentioned that he is concerned about Brogan's head. He is worried that the skull sutures are fusing too early (craniosynostosis). On Monday we have an appointment with a plastic surgeon. These are the same guys we had to see for Bobby's head, although we know his problems were more to due with his traumatic delivery. I am not going to lie, the thought of head surgery for Brogan makes me sick! My first thought was why us? Don't we have enough to deal with since Bobby has had 2 open heart surgeries and a third one slated for the summer? I was angry and bitter and feeling sorry for myself and our family. After prayer and reflection, I am working on a change of heart. We are a strong family, and with God on our side we can conquer everything! We are just going to take this one day at a time, and if it comes to surgery for Brogan, ultimately he is in God's hands and we will be there comforting him and helping him fight through. So, if you could just add these prayers to your lists, we would feel honored. If we do indeed have another battle in our future, we need your support along with our Heavenly Father's to get us through. Feel free to pass this along...any and all prayer chains are blessings.
Heart Hugs!
Rachael
Monday, January 18, 2010
A Long Overdue Update
Wow! Where has the time gone? I completely apologize for my lack of updates. The last few months have been hectic to say the least. Probably the biggest change for me is being a working mother of two, trying to finish up the last couple of classes for my master's degree, all while learning the ropes of a new job. I am exhausted to say the least!
Bobby and Brogan are growing up too quickly. Brogan is already 5 months old and Bobby will be 3 in just two short months. Brogan is a happy and easy-going baby. He is so sweet and smiles for anyone and everyone. Over Christmas break he began rolling over, and my mom and I witnessed the first roll! Now he just rolls all over the floor! Unfortunately, he too seems to facing similar challenges with ear infections and has already had 2. He doesn't show any symptoms which makes it hard for me to detect!
Bobby has turned into quite the little boy. He has grown so much in his speech that sometimes we wonder where he comes up with the things he says! He absolutely loves learning and knows his colors, numbers, and letters. His godmommy got him a text and learn leapfrog for Christmas, so now he seems to be tackling lowercase letters and sounds. Believe me when I say it is all him! Bobby continues to love being on the go. Each day during Christmas break, Bobby woke up every day going through a list of places to go-Doris' (babysitter), Payton's, shopping, and church. What a character. Health wise, Bobby had a nasty cold in December, but was able to fight through it without any interventions. He just visited the GI doctor and weighs over 30lbs. The doctor was thrilled. He will have a cardiology visit in March/April in which we will begin prepping for surgery in the summer. To be honest, I am still trying to find a place of peace and complete trust in GOD about the upcoming events. Much prayer and reflection is needed!
We had a wonderful Christmas! We celebrated with Grammy before Christmas and Bobby seemed to enjoy opening presents. Once my family arrived, Bobby really seemed to catch onto the idea. He kept asking for presents and we had to hide many of them just to keep Bobby calm! We were so fortunate to be able to celebrate with my parents, grandma, brother, and sister-in-law. My dad continues to struggle with dementia and my grandma is coping with the loss of her husband a little over a year ago. Each Christmas is a blessing, all things considered.
I guess that is all from the Weeks' household for now. Again, I apologize for the lack of updates. I will work on being better about this!
Heart Hugs!
Rachael
Bobby and Brogan are growing up too quickly. Brogan is already 5 months old and Bobby will be 3 in just two short months. Brogan is a happy and easy-going baby. He is so sweet and smiles for anyone and everyone. Over Christmas break he began rolling over, and my mom and I witnessed the first roll! Now he just rolls all over the floor! Unfortunately, he too seems to facing similar challenges with ear infections and has already had 2. He doesn't show any symptoms which makes it hard for me to detect!
Bobby has turned into quite the little boy. He has grown so much in his speech that sometimes we wonder where he comes up with the things he says! He absolutely loves learning and knows his colors, numbers, and letters. His godmommy got him a text and learn leapfrog for Christmas, so now he seems to be tackling lowercase letters and sounds. Believe me when I say it is all him! Bobby continues to love being on the go. Each day during Christmas break, Bobby woke up every day going through a list of places to go-Doris' (babysitter), Payton's, shopping, and church. What a character. Health wise, Bobby had a nasty cold in December, but was able to fight through it without any interventions. He just visited the GI doctor and weighs over 30lbs. The doctor was thrilled. He will have a cardiology visit in March/April in which we will begin prepping for surgery in the summer. To be honest, I am still trying to find a place of peace and complete trust in GOD about the upcoming events. Much prayer and reflection is needed!
We had a wonderful Christmas! We celebrated with Grammy before Christmas and Bobby seemed to enjoy opening presents. Once my family arrived, Bobby really seemed to catch onto the idea. He kept asking for presents and we had to hide many of them just to keep Bobby calm! We were so fortunate to be able to celebrate with my parents, grandma, brother, and sister-in-law. My dad continues to struggle with dementia and my grandma is coping with the loss of her husband a little over a year ago. Each Christmas is a blessing, all things considered.
I guess that is all from the Weeks' household for now. Again, I apologize for the lack of updates. I will work on being better about this!
Heart Hugs!
Rachael
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