July 4: Day +2

Happy 4th of July to you all, though it's probably July 5th for some of you reading this. Anyhow, there have been plenty of fireworks over here since I last posted.

Bella was scheduled for her Hickman to be replaced at 8 am this morning. That seemingly went off without a hitch. She came back up to her room and mommy sent me a picture from her camera phone and all was well.

Then, a little while later, my phone rang, and it said Ang's name on the phone. When I picked up, it was Dr. Tolar. I heard him say, "Tim, hi. We had to intubate Anabella..."

Then the call dropped.

Seriously. Like right out of commercial. The hospital is one big black hole for cellular service.

So, my heart just about jumped out of my chest as I frantically called back and texted her phone to call me on the RMH room phone.

No reply.

What do you do? At this point, from what he DID say, I figured that if they intubated (stuck a breathing tube in) Bella, she was back in surgery and Ang was somewhere deep within the hospital and no longer in our room on 5D. I tried calling our room, except the ringer is busted on our room phone and only makes the slightest of sound. I had two loads of laundry in, and was in the middle of cleaning the apartment. Even if I was to stop and run out the door dragging Ali behind, where would I go?

So I waited, for what seemed like eternity. Then, at some point, the room phone rang, and it was Dr. Tolar again. Bella's secretions out of her mouth and throat from the mucositis were so bad that she could no longer get enough oxygen into her blood, so they had to intubate her. Her oxygen saturation dipped down to 40% at one point. Her heart rate was racing through the roof. Basically, she was suffocating on blood and saliva. Poor thing. Can't cough, can't spit. Just suffocating. Ang recounted that she was thrashing around so violently when they were trying to suction her in her room that she seriously tore up her skin in and around her right armpit and back. In addition, they were tearing up her mouth from the suctioning. Remember that last week, Daylon coded from the same issue, so they didn't want to wait till that happened again, so thank you Daylon for blazing a better trail for us. We appreciate you, you little trooper!

Apparently, during the line placement, they had trouble keeping her airway open, had to suction her mouth and throat quickly, and they damaged the underside of her chin externally, and mouth internally in the process. This caused an increase in the blood in her throat, but she already had an unstable airway to begin with.

When they went back in to try to intubate her, they tried to put a fiber optic down her throat to see where to intubate, but as her nurse described, they said it was a "blood bath." There was so much swollen tissue, blood, and saliva that they had to "go in blind" and stick the tube down her throat without seeing where they were going or what they were hitting along the way. This invariably caused even more trauma, but there was nothing else they could do. Dr. Tolar was in the O.R. for both procedures and said they had no other choice. And so it is yet again with Epidermolysis Bullosa. On your menu are two crummy items, and you choose the least crummy.

So, where are we now? Well, it's 12:30, and I'm sitting next to Bella in the PICU (pediatric intensive care unit). She is on a combination of fentanyl for pain, versed for sedation and amnesia, and vecuronium for paralysis. She is on a ventilator which controls her breathing for her. Her heart rate is at a peaceful 109, 110 beats per minute.

It hasn't been that low in DAYS. It has been in the 120s and up to 150s and 60s. She has been working soooo hard just to breathe. Now she can work hard on healing. What a blessing.

Be careful what you wish for. Remember the other night how I said I was a little jealous of Daylon and his fam for being over here. They are now two doors down.

So it is in here that we will stay for probably a good two weeks. Could be only one, could be three. At least Bella will be pain free, agitation free, memory free, and injury free while she goes through the most intense portion of this journey: the first 3 weeks. With it comes a host of different challenges, but weighed against the big picture, we'll take 'em. Wound care will go so much more mercifully since Bella won't feel a thing while she essentially sheds her existing skin. There is less for me to do over here, but still much for me to be: Be loving, be nurturing, be present, be strong, be assertive, be protective.

Please focus your prayers on Bella's new cells. These new cells from Ali are the key to everything. In order for her to heal, these cells need to grow. The faster they grow, the faster Bella heals. Visualize these new cells now getting the chance to move right into a calm and peaceful new home, where they are welcomed and encouraged to reproduce at their leisure.

Lastly, at some point today, maybe as you are reading this, in your mind's eye and in your heart, will you reach out and gently hold Bella's hand? I know her spirit will feel your touch.

There are many challenges to come, but at least breathing isn't one of them. Life is good. God is good. All the time. Good night.