So today was definitely a rough day. AJ's pigtail tube was not able to be taken out. When they prepped him they unseal the drainage and let it suction. Well it suctioned more than what was supposed to be there. So his left side is still in a great deal of pain. They also took off the dressing from his previous tube that was on the left side. It was moist but was forming a scab. So that is good.

So, of course, before every feeding was the time that he decided to take a quick nap. Thus, I only was able to introduce a bottle to him once. The bottle had apple juice in it because Enfaport is just disgusting. He really was not in the mood for anything. OT also brought up some baby food. Pears (she must have randomly chose them). He liked them but it was so difficult to try to get him comfortable with the tubes and wires. And I know that in order for him to eat, his positioning needs to be perfect so all he has to worry about is suck, swallow, breathe. Unfortunately, OT is delaying the swallow study until he has a few more successful attempts.

He also has been projectile vomiting in large volumes. He did not spit up at all with Neosure so I am going to blame it on the Enfaport. They insist that he really needs Enfaport. I plan on discussing it in detail with the nurse practitioner tomorrow.    

Throughout the entire day, AJ was super tired and fussy. There are just too many things going on around him and he does not want to miss a thing. In addition, I think the tubes are continually forcing him to be in pain so he would probably benefit from a higher dosage/frequency of pain medications. When he cries, nothing can soothe him. It hurts him to be picked up. It just breaks my heart to see him like that. I plan on going to bed early and trying to start fresh tomorrow...    

Today was a successful day! An x-ray this morning showed that there is no longer an air pocket in his lungs. Finally, a nurse decided that there is no need for him to be on oxygen and took it off. He was so happy about that! His cheeks, of course, are blistered red but at least now he does not have to try to rip it out all the time. He also decided that he did not need the peripheral IV that was in his foot. Somehow he pulled that out. But thankfully they do not think that they will need to put another one in.

They also decided that if all goes well, he will have his pigtail tube taken out tomorrow morning. Then only 1 more left! The right pleural one that is left is still draining quite a bit. So I'm not sure how much longer he will need that one.

PT finally came in today too. They were so pleased and surprised at how well he is doing. They did not think that he would sit up by himself as much as he does. He also is grabbing for toys in midline which typically does not happen so soon after surgery. He does have a lot of tightness in his neck, shoulders, and hips, which is expected. They plan to see him every day until discharge! I was happy with the way that they interacted with him and the gentleness that they used.

OT (occupational therapy) came by, as well. The swallow study is scheduled for the 17th at 2pm. I offered him a bottle with only 5ml of Enfaport through a normal flow nipple. Enfaport is much more bitter tasting than Neosure, so I was apprehensive at first (and yes, I tried it). He took a few sips but was not enjoying it. He played with the nipple like it was a toy. But for being the first bottle in a long time, I think he did very well. OT wants me to offer a 5ml bottle at every feeding that he is awake and alert for. This will help him to get ready for the swallow study. My only concern is that he is already accustomed to Neosure and I want to put him back on that. I just don't want to create a negative connotation towards feeding because of the taste of Enfaport. I guess we will just see what happens...

Overall, he looks great, is laughing, playing, and starting to talk again. I can tell that he is feeling much better. Once the pain from the tubes is gone, he will be very close to discharge!          

And no he is not sucking on that pacifier. He still doesn't like them. He's just playing with it.

AJ was able to have his left pleural chest tube removed this morning. The X-ray showed that he still has an air pocket in his lungs. Even though he does not need oxygen, the nurse practitioner felt that it will help push the air out. So who knows how long he will continue to be on oxygen. He has 2 tubes left and he is ready for them to be gone! It really is so difficult to hold him and enjoy it without worrying if you're going to step on a tube.  

He finally sat in his Bumbo chair and played with his toys. He definitely enjoys sitting up rather than laying down, as usual. I also requested for him to start receiving PT (physical therapy). The same nurse practitioner seemed to be apprehensive of it because she did not think that he was receiving PT at home. Apparently, she must not have looked at his chart. Thankfully, she has worked for the last 4 days and will not be around for the next few. Regardless of where you go, there are always people that give off bad/negative vibes. She is one of them. But that is okay. I continue to be positive and will not let the small stuff get to me.

On the bright side, AJ's digestive system is working very well. They finally stopped giving him Miralax because he has been leaving multiple stinky presents for the nurses on a daily basis. Apparently, they thought that we gave it to him regularly, not just as a PRN. Now they know. :)

The opening where the tube was removed started to drain out today because the suture was no longer on it. The nurse covered it with gauze and hopefully it will not drain as much. These tubes have caused a great deal of chaos for the little guy. Yet, it barely phases him. He acts like himself minus the fun baby talk. He still does not have his voice back so he moans and groans. And he is always itching at his chest-trying to rip everything off-typical AJ behavior. :)

I just can't wait for discharge day. It will be a relief to be at home, close to our friends. I miss our normal routine and I'm sure he misses it too. Soon enough though. Soon enough.    

    

This is a good color on him! He scratched his forehead though...

So AJ has had a minor setback. His new "pigtail" tube seems to be working and the air pocket has decreased but is not gone. Since the pigtail tube has been placed his other tubes have decreased the amount of drainage. They plan to remove one more chest tube sometime tomorrow morning. Also, he is still on oxygen. They state that the oxygen is helping push the air. However, Tom and I do have our concerns that continued use will just make it more difficult to ween him. The nurses do not feel that it will be a problem.

They tested the blood from his chest tubes and found that he is losing a significant amount of healthy fats. Thus, now he is on Enfaport formula to help absorb fat easier. He will have to be on it for at least 6 weeks. This is one of the negative side effects of having chest tubes in for a long period of time. So we are hoping that he will not have to have the other ones in for much longer.

I guess I should have expected that there would be this kind of setback because things seemed to be going too smooth to be true. We will just try to keep our trust and faith in them and continue to pray that there will be no major flaws during the rest of his recovery.  

So today was interesting. AJ received 4 x-rays because they noticed pockets of air in his lungs. One of his chest tubes was leaking and possibly could have caused the air. They put him on half a liter of oxygen in order to try to blow out the air. However, that did not work. This evening they decided to take out 1 chest tube and place a smaller tube in the same place. They sedated him and completed the procedure bedside. The cardiologist stated that she noticed a significant difference in his x-ray after the procedure. Hopefully, his other 2 chest tubes will decrease in drainage so those can also be removed. Otherwise, he is doing well. They stopped his Ativan today and he seemed to be much more comfortable without it. We hope that these tubes will not cause him more harm than benefit. Only time will tell.