June 13, 2013

UPDATE (6/13/13)

Beckett has been such a good boy today. Thank you for all the prayers as he was having his heart catherization. They had a little trouble getting the access to perform the procedure, but once in, Beckett behaved very well. Even the cardiologist commented that Beckett has cooperated for him twice now. He said Beckett is such a different case and during the procedure he was saying over and over “Bend it like Beckett” (for those of you who don’t know that is a pun off a movie title). They did have to use both legs for access, so both sides of his groin will be sore, but at least they were able to get what they needed. The poor baby had such a long morning. He couldn’t be fed after 5:00am this morning and his cath got pushed back until almost three in the afternoon. He barely cried even though I am sure he was very hungry. In fact, he still hasn’t eaten as they are waiting for him to wake up more from the sedation. He also didn’t sleep that well last night and was up pretty much all day before the procedure. He did sleep a little while the nurse held him early this morning, and then again for about an hour while I held him. He laid in his bed for a long time completely happy, calm and playing. It was so cute. We went to get lunch and he was lying on his side. I placed a few toys in front of him and he immediately started playing with them. It’s so awesome to see him entertaining himself already. He was just so calm for almost the entire day leading up to the cath. He did have a few minutes of music therapy just before we headed downstairs, and he watched the therapist so intently while Jonny held him. One of the nurses prayed with us and then we had to get ready to leave. When it came time to put him in the isolette, Beckett immediately began screaming. Thankfully the nurse that had him on the day we had the PICC line procedure was there, and recommended I carry him down so we didn’t have a repeat of last time. Everyone agreed this would be best for him, so I carefully walked him through the halls while the nurse and respiratory therapist pushed all the equipment beside us. It was probably better anyway, because Beckett is so big, he barely fits in an isolette. Once downstairs, we kissed him and I handed him over to the nurse. I will never be able to explain how difficult that is both physically and emotionally. He instantly began crying and we could still hear him out the door and down the hall. Not a good note to leave on. But, he returned to us doing very well. They even hope to have him extubated sometime through the night.

So the results. Honestly, it was not exactly what we hoped to hear. Mainly because it didn’t really given us any more solid answers. They need the pressures in his pulmonary arteries to be in the low to mid teens. The left side is at 15, while the right is at 25. This is too high of a pressure to say definitely he is ready for the next surgery. But they also don’t know that it means they can’t do the surgery. So we are in limbo at the moment. There were plenty of other things talked about, but that is the main point. Currently we aren’t sure what the next step will be. They are going to present his case at their weekly meeting tomorrow and see what potential steps we should be taking next. We are not discouraged, as this is exactly the way God planned it. It just isn’t black and white like we hoped. The cardiologist did say, as we have seen with Beckett in the past, and due to his many complications he has had along the way, no matter what they do, Beckett is a higher risk patient than normal. But, we have heard that before too. So we continue to wait. You would think we would be used to this by now, but let me tell you it never gets any easier. Hopefully we will know more tomorrow. All the while God knows exactly what Beckett needs and when he will get there, we just wait for Him to bring that revelation to the people taking care of him. We know it will all happen in perfect time.

Joshua 1:9
“Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go.”

— with Jonathan Rupp at Riley Hospital for Children at IU Health.

One thought on “June 13, 2013

  1. Glad that Beckett was such a trooper today and so good. I know the waiting is hard, but it is wonderful to know and have the assurance from His Word that while you wait, your son is loved by and sheltered under the wings of our Heavenly Father. Waiting with you and Jonny and always praying…

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