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

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

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

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

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

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

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.

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

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

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

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

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

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!