I was worried that my last post was a bit premature to be celebrating her extubation and sure enough, the next morning (hours after I wrote my entry on this site) the resident doctor called me with bad news about Norah’s breathing. At 6:30am I got the call that her breathing had worsened and she had become inconsolable overnight and would most likely have to be re-intubated. My heart sunk to the floor and I immediately welled up with tears. Simultaneously, I got dressed as fast as I possibly could and literally ran back to the hospital – arriving at 6:47am. I climbed into bed next to her and cried as I pleaded with her to just cough so that she could keep breathing on the high flow oxygen we had switched her to not 24 hours earlier. I prayed, cried and begged but within minutes of my arrival, the attending doctor came in, saw her, heard her, and said, “This child needs to be re-intubated. There is no doubt. Let’s get the supplies NOW.” I felt so, so, so defeated! She had been doing so well all day and then something seemed to have happened during the early morning hours and suddenly she sounded awful, struggling with each breath. It killed me and made me feel incredibly selfish and guilty that I had chosen to go home that night and that was when the problems started.

Even now I can’t help but wonder if she would have been able to settle, would have been able to continue breathing comfortably and easily on the nasal cannula high flow oxygen had I been there to comfort her and cheer her on when she started to get upset. I know I can’t go back in time, but such a huge part of me felt responsible for her need to be re-intubated and to put her trachea and vocal cords at risk again. Anyway, to say the least, I have been staying in the hospital at night now for about a week. If it is in my power, she will not wake to only medical staff at night searching the room for her mommy or daddy and being afraid of what someone might do to her rather than awaiting a kiss on her forehead. I can’t let that happen again. She’s been through too much, come too far, fought too hard not to know that we are there for her 100%.

I digress…

So after being re-intubated on that Monday morning, the doctors became determined to prevent this event from reoccurring since both incidents had involved the left lung collapsing. I cannot even count how many x-rays she had to get. She also got several ultrasounds with and without doppler imaging, a bronchoscopy, and a CT scan over the next several days. At one point they were concerned that during surgery her diaphragm had become paralyzed as images did not show spontaneous movement and that it’s location in her abdomen was so high that it was in-fact putting pressure on her left lung. There was talk of a diaphragm plication surgery and everything. Thankfully, upon her surgeon’s request, a repeat ultrasound revealed that the diaphragm was, indeed moving. Thank God!

So on Saturday, Oct 10, after many breathing treatments, tests and many “sprints” on the ventilator, Norah was finally extubated a 3rd time. They put her on a nasal IMV so that her breathing was still being regulated by the ventilator for a day and a half, then she was switched to high flow nasal cannula on 10 liters of oxygen and slowly weaned down. In an almost ceremonious fashion, on Wednesday morning, I watched with glee as the nurse literally cut the oxygen line away from Norah’s face and allowed her to breathe completely on her own.

She remains on “room air” and is still getting breathing treatments as well as chest and back PT (basically using a rubber plunger looking device to break up any secretions in her lungs by applying moderate frequent pressure to her chest and back several times a day… aka “pounding” on her to ensure she will not develop a mucous plug). We are so incredibly proud of her despite her 2 “failed” extubations. She just had to be ready for the right time to come off of the support of machines on her own!!

THE PROGRESSION

Intubated and relying on the breathing tube and ventilator 10/10

Nasal IMV and still using the ventilator 10/11

High Flow Oxygen through a Nasal Cannula 10/12

Breathing independently! 10/13

So I left off writing the morning that we took Norah down to surgery and I feel like this week has been so emotional, so full in so many ways, I haven’t had the energy to post what I really wanted to say. A BIG thank you to Tamara and Gary (Jason’s parents) for being with us through the biggest week of all 3 of our lives!!! It was great to have the company, the hugs, and the relief that someone could stay with Norah when Jason and I needed to get away for a bit, even if it was just for lunch.

Norah’s surgery thus far seems very successful. The liver fit better than expected, and while it still protrudes out of the right side of her belly a bit, they were able to close her completely, which is a HUGE relief! Her surgery last around 6.5-7 hours and her surgeon has come in every day to check on her and do a quick evaluation, look over her labs, etc. but he seems very pleased with how things are going. Her liver enzymes continue to go down and her total bilirubin is 1.5! That’s only about 0.2 above the normal range!! She is getting more and more pink every day and her eyes are clearing up so well! Hard to say what color they will be, but regardless they are beautiful!!

She is also getting back to her old self, giving all the nurses a hard time with how “wiggly” and “grabby” she is. All of them have commented how quick and how smart she is, but they all seem to love her and appreciate her fighting spirit! Especially now that she can move more freely without feeling like she is going to choke now that they removed the breathing tube this morning (which we are hopeful will stay out this time), she is spunky and rearing to go! Thus she has to wear wrist restraints to keep her from pulling at her lines and cords to protect her from herself.

Today was not only huge in that she got taken off the ventilator, but they also needed to do 2 dressing changes, a bath, and she kicked out the IV in her foot. She slept hard after the second dressing change and bath, but was really restless at 8:30 when Jason and I came back after dinner. I filled the nurse in on some of the things Norah likes, including music, head rubs, and sleeping on her side. Very shortly after turning her to her side, she started snoring in her sleep, so it was at that point that Jason and I felt comfortable leaving her for the night.

It’s been 1 week since she received her precious gift of a second chance at life and it just feels so surreal, even still. I’m not sure when my head is truly going to be able to wrap itself around what has transpired over the last 7 days, but I’m sure the next several weeks will be full of small milestones! We are so grateful that there was a family out there that made the difficult decision to allow their child to help others when he passed. Please pray for both our family and the donor family as both have much healing to do over the coming days, weeks, and months. We feel so blessed by God’s miracles and the way he worked this all out, even if it threw Jason and I for a big loop. Hehe. Probably best that we didn’t have much time to try to process and anticipate it all!! Now we have a bright future to look ahead to!!!!!