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

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

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

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

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

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

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!

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

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

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!!

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

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

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

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

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

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

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!

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

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!