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!