Post-Op, Day 3 and moving

Landon is still doing very well. Today he had his last chest tube removed and he was taken off his oxygen. His nurse also removed his kidney sensor. (His brain sensor was removed yesterday.) The only thing left to be removed, other than his leads for vital signs, is an IV. That should be removed tomorrow.

He had a swallow study done today to check if he will aspirate while eating because of his vocal chord. They found that he did aspirate on his third swallow with a fast flow nipple. So, they switched to a slow flow nipple and he did fine with that. Unfortunately, because they use barium for that, his stomach has been bothering him most of the day since then. His stomach isn't really moving anything out of it, so he hasn't been very hungry. He gets quite uncomfortable and whines a lot because of it. Hopefully that will move through him soon so he can eat orally and be more comfortable.

He has been receiving respiratory therapy today to help get some of the "gunk" out of his system. He got somewhat of a bath today and cried a lot during that and that is almost the best therapy he can get. His cry is a lot quieter than pre-op, but that was to be expected. Hopefully that will return soon.

We got half a smile out of him today when I finished changing his diaper. But it was like he realized he was mad at us and stopped. He has spent most of the day watching cartoons on the laptop. They have kept him calm and helped him forget that he is uncomfortable. We had him out of bed a lot today to help gets things moving through his body. He loved being held and got upset when we put him back in bed.

On a low note, we found out tonight that we have to move to a different room. They have been doing a lot of shifting of kids tonight and we are one of them to be shifted. It's a pain in the rear! This happened to us the last time we were here. We were told we would be moved to a shared room and that we would have the larger side of the room. Then...we found out that we are really being put on the smaller side. The boy we are sharing with is the same boy we shared with before we were discharged in January. Now, this is horrible. This little boy is now 4 months old and rarely has his family with him. We are not allowed to give him attention, for obvious reasons, but I find it very difficult to be in a room with him and not pay attention to him. Hopefully since it's the weekend some of his family will come in. It'll be a little easier for me because I will be gone all day, and most of the night, tomorrow for a track meet.

We are very proud of Landon and how hard he is working. He is an amazing boy! If you haven't met him yet, you will see someday what I am talking about. He has really changed our lives. I never knew what people meant before when they said, "Kids change everything." I know now. All of the stupid things that bothered me before, just don't matter. I don't get caught up in minor things that really shouldn't affect me much. I just ask one thing of all of you who have children or grandchildren...hold them tight and make sure they know how much you love them. Remember how lucky you are to have them in your life. They are an amazing blessing from God.

Watching cartoons on the laptop

Snoozing with Dad

Post-Op Day 2

Landon has had a great today! He had a lot of things removed, so he seems a bit more comfortable. He also has been awake and looking at us a lot today. This morning he had two of his chest tubes removed, the pacemaker wires were removed, his catheter was removed and one of his IV lines was removed. So he is left with one chest tube, one IV line, and the oxygen in his nose. His oxygen was changed to a lower rate and we were hoping to get rid of that today also, but the docs didn't okay it. I'm sure tomorrow it will be removed. His blood pressures had been pretty high today, so they started him on captopril to help with that, and his pressures have dropped nicely.

We are told by the doctors that he is ahead of schedule for his recovery. He began eating today, through his G-tube. He has tolerated that very well! He was very hungry all morning, so we were very happy to let him "eat." I was able to hold him today, on a pillow, and so was my mom. It was pretty painful for him to be moved. His cry is very hoarse and pretty quiet. He is having a swallow study done tomorrow so we can find out if he can try to eat orally. He still receives Tylenol for pain and morphine as needed. His mouth gets really dry, so we wet it with a small sponge and some sterile water.

We were told by our main surgeon today that he may be able to go home this weekend. So, both surgeons have said that. We are a little nervous about that and don't want to rush things.

Grammy and Papa Bausman and our friends Holly and Tyler visited today. Holly took some pictures while she was here.

Day 1 Post-Op

I will warn you that the pictures in this post may bother you. They show all of his lines and tubes. So, if you don't want to see him like that, don't scroll all the way to the bottom.

So far Landon has had a pretty good day. We learned the first time around that we shouldn't rush things, so we are staying calm and taking things one step at a time. Late this morning Landon was extubated. In order to do this, the slowly took him off the medicine that kept him asleep. He has done great since he was extubated! He is still receiving oxygen, but he is breathing on his own. He was on fentanyl for his pain, but they have suspended that and are giving him tylenol every six hours for pain and morphine as needed. He is on a variety of other drugs, Lasix to remove any extra fluid, a steroid to help with swelling, he receives breathing treatments to help with swelling from his breathing tube. (I'm sure there are more and I just can't remember them all!) He has many tubes and wires attached. He has three chest tubes, two pacemaker wires that go to his heart, a catheter, three IVs, a patch on his back to monitor his kidneys, a patch on his forehead to monitor his brain, a pulse/ox button on his toe, and of course the leads that monitor his vital signs. Last night a team from EEG came and put 23 electrodes on his head to monitor his brain activity to make sure that he didn't have a stroke or seizure. Once they extubated him, they removed those electrodes also.

We are told his is doing very well. His heart is functioning great and his breathing is much better. The doctors were concerned about the possibility of his diaphragm being damaged, but they did a chest xray and saw that it is fine. He isn't waking up too much. A couple of times he opened his eyes for Nick. He is a bit restless, but seems to be comfortable. The doctors are hoping that he will wake more tomorrow and will possibly start eating. We'll see...like I said, we aren't rushing anything. As before, we are very pleased with the care he is receiving. One of the surgeons stopped in today and said that he will be here all weekend and would like to be able to send him home at that time. We aren't getting too excited about that. Landon likes to do things on his own time, kind of like his dad.

These were from last night. In the bottom one, you can kind of see the machine he is connected to for medications. He also has wrist restraints so he doesn't pull anything out. Those have been taken off. We used socks as mittens and have even taken those off for a while also. However, as he wakes more they might have to be put back on.

Today's surgery

Well...we have had  a very long day! We arrived at the hospital around 6:15 am and went back to our room fairly soon after. Landon was taken from us at 7:30 to be prepped for his surgery. The surgery started at 9:30 and they began closing him around 5:00. They had a lot of work to do! The doctors weren't happy with where the button for his feeding tube was, so they began by removing that so it didn't cause any problems. Then, they patched his lower hole, which was a concern for them. It turns out they were happy with where it was and the process went very smoothly. They placed a device that closes the hole and once they got it placed there wasn't any extra blood flowing through it. That is the goal for that device and hole, so the first phase went well. Then Dr. A moved on to repairing his aorta. It turns out that it was re-narrowing, but he had some scar tissue from the first surgery that was creating a problem. He cut the arch of the aorta and placed the patch so that the aorta is much bigger now and blood can flow better through it. Then, they moved on to patching his other VSD. That went so well, they patched the hole that he had in his atrium. (I know what many of you are thinking. I thought he only had two holes? He had three, but the third wasn't as much of a concern so we never really talked about it.) They thought that they might as well patch that one since they were already in there. They allowed him to wake up for a brief period of time to check his movement and all was well. He was moving his arms and legs well, so they put him back to sleep so that he could rest and recover. They are monitoring his brain closely because stroke or seizure are a possibility with this surgery.

He handled the surgery very well considering he was put on by-pass at 3-1/2 months old. We are hoping for a speedy recovery and as much comfort as he can have. It is now 6:40 and we haven't seen him since 7:30 this morning. We can't wait to see him! We did not have a comfortable place to wait during the surgery. The pre/post-op rooms are small and do not have comfortable chairs! Landon is back in the room we had before, not the room we shared, so we are very familiar with that room. We have been told that he will have about twice as many tubes and lines than he had the first time, but we don't care, we just really want to see him!

We thank everyone who has prayed for Landon and who has asked others to pray for him! We would not have made it through this without all of the prayers and support. I apologize that I don't have pictures with this post. I didn't have time to upload his Easter pictures before we left. Hopefully I will have some soon. All our love and gratitude to everyone!