Okay, I know what you want is an update on Luke! He remains stable, still on a ventilator. They had to increase his vent settings on Wednesday and are hoping to start weaning them again today (Fri). He had a rough start to his day on Wednesday because his central line, which is what he gets all of his iv meds through, and they draw his blood from, was leaking. The nurses tried 3 times for a regular iv and were unsuccessful. Then, our PICC nurse came and looked and said there was nowhere for her to do a PICC. So, they called the NICU and they tried twice to get a PICC placed, with no success. Finally, Dr Carroll was able to guide a wire through the current central line and put a new one in the same spot. This all happened before noon!
Overall, we are still in a waiting pattern. We change one medicine to correct something, and that causes something else we need to fix. It's just going to be that way for now. For example, his CO2 is high, which is because his bicarbonate is high, which is because of the lasiks he is taking (and needs to keep his fluid retention down so he doesn't get pneumonia). So, we back off the lasiks and then his lung X-rays show that they are hazy, so we treat that....and the cycle continues.
They did start him on a medicine that is used to treat pulmonary hypertension. They don't feel like he has this disease, but he did show symptoms of it when we got here last week. The doctors explained that some kids have pulmonary hypertension when they get sick, even when there is no sign of it when they are healthy. He is going to be a child who gets sick quickly and it's going to affect him more significantly than other kids. Its a bummer for him, but I like that they are talking about his future!! Also, he got a blood transfusion yesterday to help build his volume back up and give him a boost so his lungs can heal. Essentially, that is what we are waiting on. His lungs are not in good shape. They are still doing his lung conditioning and have added in lung PT, where they use a soft tool to hit his chest rapidly to try to help him break up his congestion. It is working. Also, they have put him back on albuterol inhaler puff every 4 hours to try to help.
As for the rest of us, we are good. Aunt Kelly has been here this week from Indiana to help out and we are so thankful for the extra help. She made cut out cookies with the kids last night, did gingerbread houses with Jordan and Drew, and helped Andy with bedtime and morning routines daily. The Allen's are coming through town today and picking her up on their way to Indiana for the holidays. We are sad not to be traveling with them, but Andy's parents are heading our way this weekend and will stay through Christmas. The big kids are super excited. I have had their gifts wrapped and under the tree since last Wednesday, so they are ready to see what is in them! :) They were able to come up to visit on Tuesday night and did great. We brought them in one at a time while the others made Christmas cards for their teachers in the waiting room. None of them acted scared or intimidated by all the machines, just curious. They all told Luke how much they loved him (unprompted), which melted my heart. He is such a big part of our family already, even though he is still so small (6 lbs, 6 oz to be exact).
Thanks again to all for your continued prayers, thoughts, play dates, hospital visits, Starbucks... We are blessed beyond measure to have so many praying for our little Luke. I hope to update again soon, but if it doesn't happen, please have a wonderful and Merry Christmas!!
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