The Johnson Juggle: part 2

Next up is Burke! He has been so active lately. Something in him came alive recently and we have just loved it! A quick up date on Burke is that he is over all doing well. We went to the dr. last week and he weighs a whopping 23 lbs. 2 oz!! Can you believe that!? I sure can't because just after his last surgery he got down to probably 16 lbs. He has grown so much and we attribute that to his wonderful feeding tube. I could do a whole weeks worth of blog posts about that feeding tube and could call it all sorts of awful names under the sun. But I will refrain. It is such a blessing to have that feeding tube in for Burke's health. I completly agree with why he has to have it, but it is a royal pain in the *#$!! Yep, there you go, I couldn't refrain. I will get back to the feeding tube later, but back to his update.

Burke has been sick for the past three weeks and this week he is finally back to his normal self. We had to cancel his heart cath and have rescheduled it for February 17. I will be taking him down on the 16th and the cath is early on the 17th. They will perform the cath to check his arteries to see if they have grown at all, and then proceed to balloon open his left branch of his pulmonary artery in hopes that by doing so those arteries will begin to grow and expand more on their own so he could possibly get off the oxygen and buy us more time before he will need another surgery. We are hoping for a few months or so for them to grow after which they will be able to perform the full repair on his heart. If those arteries don't grow, or don't grow big enough, they might do another heart cath to balloon open the arteries again, or even do another in between surgery to buy him more time for his arteries to grow. The goal is to get his pulmonary arteries big enough for his heart to handle the full repair where it would require of his heart to pump like a normal heart. They cannot fix what else is wrong with his heart until those pulmonary arteries grow big enough.

Burke has been growing great, but he is still on the oxygen and still huffing and puffing a ton even though he has more energy than any kid I know. He just goes and goes, and I have to stop him every once in awhile and hold him so that he doesn't over do it. The reason he is huffing and puffing so much now, is that as he gets older and bigger his heart cannot handle what his body requires of it, even though he is on the oxygen. That is why they need to do the heart cath soon and hopefully get his full repair soon too.

So, here is what B has been up to lately:
So these two pictures were taken awhile ago when he was eating. Since he has gotten sick he basically didn't take anything by mouth. Which I am worried about. So, he still has a limited diet because he aspirates thin liquids. He also cannot control and properly chew some foods because of his tongue. It is getting better, but we have taken a couple steps back because of his cold he had. I really understand more of what B is going through though. I also got a cold recently and I couldn't breathe or smell or taste my food or anything. I was sitting down for dinner one night and knew that I should be hungry. I had a huge plate of dinner in front of me and my brain said that I was hungry but my stomach didn't. And I could barely eat because I had to stop every so often to breathe. I bet that is the way B is all the time. He can barely breathe sometimes and his body doesn't even register that he is hungry because he is trying to focus on a more vital thing as breathing. I have learned from our speech therapist that adult who have respiratory diseases and such, know that they need to eat, but they physically cannot bring them selves to doing it because they can't breathe, or don't get enough air to allow them to breathe and eat at the same time. I have never really known how B felt until I had that cold. I feel so bad and try and not get frustrated while I feed him and he doesn't eat. I just worry that after his heart gets fixed that he won't ever eat normal again, or that he will have his feeding tube in for ever. I know that his feeding tube is going to be in for awhile, and I am still coming to grips with that fact because it is so difficult to deal with and to not know that there is an end in sight is hard. If I knew that he will get off of it, then it would be easier, but not knowing when and if he will get off of it is hard to handle. But, overall it is worth it, because he is getting big and growing and obviously needs it which makes me one happy mama.

Here is B in the bath and guess what time it is? Oh, it was 3am. Yep that is A.M. alright! And yes that is me and Ty is up to because he took the picture. Thankfully, Emma slept through B's bath party! One, night like most every night these days, B's alarm on his feeding pump went off. It must have been kinked or something. I walk out in the hall and smell Pedia Sure. I didn't think much of it, until I get in his room and was overwhelmed by the smell and look down to see him and his whole bed and bedding drenched in the vanilla flavored stuff. It was unbelieveable to think that most of his feeding went on him or around him not inside of him. I start yelling and gasping and growning and Ty comes to see the damage. We could not believe it. What happened was that the plug on the end of his feeding tube where we hook up his feeding pump gets loose. Over time it doesn't plug up as well and unplugs and drains everything everywhere. There are two ports and sometimes it is the one that is hooked to the feeding tube, but other times it is the port on the side so as the food goes in, it comes right back out because the side popped open. Do you know how frustrating it is? It is unreal how frustrating it is. It came apart in Walmart and leaked out all over the floor. It is come apart many times while B is in his car seat or stroller and he just sits in the formula and sometimes it is even already curded formula that comes out. It is basically throw up with out B actually throwing up, good for B but not for me. It has come apart all over his bed many times and also all over my very nice and very expensive glider in B's room. We finally got smart and now put tape over both ports, though the tape sometimes comes off too. So, just two nights ago, I went in to check on B and it happened again. It was all over his bed, a lot of it too. I thought it didn't get on B, oh, but it did. I had to take him out of his bed and change his whole bedding and then gently wake him up and change his whole outfit and do you know how hard it is to change a child who has two tubes. It takes me forever to change him and to figure out exactly which clothes will work the best so we can have access to the feeding tube and also so the tubes don't get tangled and pull on his face and ears.Here is him laying on the changing pad on the ground while I was changing his bedding. He didn't even move when I took him out of his bed he was so tired. You can see his leg was covered in PediaSure. The pink think by his hip is the end of the feeding tube that I have been talking about.

Here is a closer look at the port at the end of the feeding tube.Isn't he the sweetest thing in the world though?B's voice is also starting to come back which is very hopeful for his vocal cord. They will do a clinical assessment of him next week to see if he can maybe handle thin liquids again. He is also starting to laugh, which is the funnest thing to hear. He laughs like an old man who smoked all his life. And he can't laugh for too long because he can't breathe. It is so fun to hear it again though. And this kid is ALL BOY! He makes boy noices and throws things and crashes toys against each other and laughs. It is really fun to see him grow up and explore and learn. His vocab is coming along and he can say dog, car, mama, emma, dada, down, and he has a pretty awesome ROAR! We love our little guy and are so grateful for him.