March 6, 2013

UPDATE (3/6/2013)
As Jonny said earlier, we walked in this morning to Beckett’s oxygen at 80%. The x-ray showed atelectasis in his entire right lung. The increased his breathing treatments to every four hours and started his chest percussion therapy again. After his first round of CPT this afternoon and having been on his left side for about an hour they were able to decrease his oxygen all the way down to 34. He was awake for quite some time this afternoon and evening, and was completely calm and just staring at his mobile. He would look at us and appeared content. He was so cooperative with everything they had to do today, barely crying and sleeping through most things. He had a busy afternoon filled with changing his PICC dressing, having an IV put in (which he just laid there and watched them without even pulling his arm away), heel sticks for blood draws, and more.
His hematocrit was low again today, so he had another transfusion, which is why he needed another IV. He was having residual through the night from his feedings, but that had improved by the early morning. His girth was increasing throughout the day, but his abdominal x-ray looked good. It appears to be fluid since it shifts with his position, but they are continuing to watch it. His girth had decreased by a centimeter and a half by the time I left this evening. They had given him an extra dose of IV Lasix following the blood transfusion to help with his diuresis. His billirubin has also come down so he no longer needs the HIDA scan.
The blood culture last night that showed bacteria growing required him to be on another antibiotic. In talking with the infectious disease doctor this morning, he said hopefully a few doses will kick this and Beckett will be back on his way to continued healing. While of course we would rather him not have an infection at all, it is better to have an explanation that can be treated rather than no explanation for the problem. Yesterday they were thinking it was Beckett’s heart that was not able to handle the demand now that he is growing. The were even talking about the possibility of needing to move his second surgery, which is supposed to take place this summer around six months of age, to three months of age. I talked with the nurse practitioner that works with the surgeon today, and she said Beckett is not on the surgery schedule for the next few weeks. While it is always a possibility we could have that discussion in a month or so, it does not look like we need to at this point. The echo from Monday shows Beckett’s right ventricular function is decreased a little from January but this is seen a lot as he has one side doing the work of two. This is also why Beckett has cardiomegaly (enlarged heart). They increased the dose of one of his medications tonight to help the heart work more efficiently until the next surgery when it won’t have to work as hard. So while of course I would rather him not have an infection, I am glad it appears Beckett had to go back on the ventilator as a result of that, rather than an issue with his heart.
Beckett’s repeat x-ray this evening showed the lower lobe of the right lung has reopened, but they rest of the lung still needs some work. Beckett slept through his CPT tonight, and you should see how they pound on his chest, (especially because he hates the other method which is actually gentle vibrating). How ironic is that? He even made his respiratory therapist laugh because as soon as she stopped he opened his eyes and looked at her as if to say, “why did you stop that?” But then he went right back to sleep and was sleeping soundly when I left. They had also decreased his rate on the ventilator multiple times today and were decreasing it to 25 when I was leaving because his blood gases have looked so good. The therapist said if he keeps this up he will be off the ventilator before she comes back next week. While that may not be the case due to his upcoming surgery for the g-tube, it is great to know he is progressing quickly in a positive direction after having been on these new antibiotics. Yesterday I had thought Beckett truly looked sick again, but today I felt he looked much better. He has fought through much rougher days, and while this is very serious for him, I know he will fight through this as well. So this morning Beckett was on 80% oxygen when I walked into the room, but tonight when left he was on 22% (room air is 21%). Praise the Lord for that.
My mom and mother-in-law are both here in Indy staying with me tonight, so I will be done so I can enjoy the slumber party. God is always with Beckett, and with us. We rest in his faithfulness.

— with Jonathan Rupp at St. Vincent Women’s Hospital.

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