More Weaning from the Ventilator

Even though Brianna was to have a quiet weekend of rest, it was a little hectic. She continued at 20 on the ventilator's mean air pressure (MAP), and struggled a bit to keep the carbon dioxide at a normal level. But she managed. However, when she was turned on her stomach Saturday, she must have gotten naucous.

The doctors decided that she wasn't tolerating the naso-gastro tube feeding of a nutritional fluid, so they stopped the feeding. Then, the nurses found that she had thrown up a bit when suctioning the tube. The doctors then decided to put in a tube that bypasses the stomach and sits in the small intestine. They tried to put it in and they had a difficult time. Two x-rays were taken to see if it was in place and it wasn't. So poor Brianna went through the procedure and they had to stop. She got tears in her eyes while they were putting the new tube up through her nose and then down to her GI tract even though she was sedated. Thankfully, they gave her a little more medication.

My mom and dad stayed and made sure Brianna was kept comfortable all weekend. They did a great job alerting the nurses that Brianna had tears. I am so fortunate to have such supportive parents. They sat with Brianna's all weekend, so that I could go home and spend some time with Trevor and John for Mother's Day. Here's a picture of our handsome son. I miss him so much when I'm away for so long.

It was very nice to be home for most of Saturday and Sunday. I was able to leave the hospital Saturday late morning, stop by the store to buy a couple more pair of jeans (I got down to one that fit me okay because I just haven't shopped much), and then headed home. We saw a very funny movie Saturday night, Hot Fuzz. It was part comedy and part murder mystery and had such a great twist. There are a few gross parts, so I wouldn't take little kids. It is an English movie and very different than what's out there. It was a nice escape. Leaving the theater I thought about Brianna.

Going home was bittersweet. I kept thinking about Brianna, wondering how she was doing and missing her. We all thought about her while at home. I was able to grab a few of my art supplies and a journal to try to do a little journaling while I wait for her lungs to recover. And I thought about all those Mothers out there who are celebrating the day with their children and those like us who cannot for the time being.

But over the weekend, I felt a cold coming on. My throat was sore and I was sneezing. Everyone has to wear a mask while in her room. We just can't take any chances. But John and I were with her Sunday night and then left. I made sure I used the hand sanitizer a lot while there. But on Monday morning, our doctor said I shouldn't go in her room. I pray that the time I spent with her on Sunday night didn't cause any harm. She can't afford to catch anything.

Yesterday was a little hard for me, since I couldn't be in the room with her. But I know it was for a good reason. I called the nurse several times throughout the day and talked with our nurse practitioner and the doctors in the morning. Then I left the hospital, just because I didn't want to get anyone else sick in the hospital. I spent the day in my hotel room, working on our hospital bills and talking with the insurance company.

Brianna made more progress yesterday. She got down to 18 on the MAP and now the doctors want her to get down to 16 on the MAP before switching ventilators. Again, this is a PICU attending physician thing. Which ever one is on will determine how far we go down on the MAP. This week, it's Dr. Cornfield who we really respect. He's the medical director of the PICU and a pulmonologist and did the very first bronchoscopy Brianna had. So he's followed us for more than a month and we have asked for his opinion on all that has happened with her lungs.

This morning my cold symptoms have subsided, but I still feel it. So I can be in her room for 10 minutes at a time, with a double mask and after washing my hands up to my elbows. Our wonderful primary care nurse Presley is there today and I know Brianna is in good hands. She is such a great nurse and we feel so lucky to have gotten her early on and for her to sign on as Brianna's primary. Brianna is now down to 17 on the MAP, so every day she continus to be weaned. I thank God for this.

We still have a long way to go to get Brianna well though. Now we will see when she will be put on a conventional ventilator and then be able to be moved for CT scans on her right lung. Another Patient Care Meeting is scheduled for this Thrusday and we'll see if the doctors think it's time to get surgeons involved. Our hope and prayer now is that Brianna won't have to go through another traumatic lung surgery to fix the hole in her lung and the remaining fungal infection. We suspect she may though. This would mean at least another three weeks in the pediatric ICU.

I talk to Brianna and tell her that this is her marathon and she's winning so far. I tell her that she is doing a great job and to continue fighting. We are waiting for her and are here for her, so stay strong. I tell her she can do this and not to give up the fight.

Your prayers and wishes of healing, courage and strength have helped Brianna and our family get through this. Tomorrow will be week 12 after her transplant, which means we will have been here for 94 days. We all can't believe it, and yet it seems like it has been a lifetime. Please continue to pray and send positive thoughts. We haven't reached our destination yet and it will be a while before we do.