Day 16 in the PICU

Monday Bryan was with Ivy in the room and I ran the kids to school and took Lexi to dance. My niece is here for a few days and was dying to see Ivy (and mommy was already missing her terribly) So after dance we headed right over to the hospital. 

Lexi had fallen asleep on the way over so I sent Rylee and my Niece Michaela in first. A few minutes later when I entered the room I began talking while I washed my hands and my baby girl who was very much still asleep and out of it, opens her eyes WIDE!!! She heard her mama and there was no mistaking she knew who I was. 

God knew I would need that to get me through what lay ahead for the day. As I walked over to her bed (She is in a new room now, they moved her because she and the girl next door are pretty critical cases and having them right next door to each other makes nurse pairing for breaks and such, very difficult)

I immediately noticed that most of her lines and cords were coming from the left side of the bed. She always has bundles of things coming from both sides but it was very open looking (maybe 4 or 5 things) on the right side. I had this overwhelming desire to figure out how to scoop her up. I wedged my way in and easily cradled her in my arms. I was standing and holding my sweet little hero! 

Her machines started beeping, her blood pressure rose, but she was completely relaxed and gave me another much needed confirmation that she knew who I was. It's tough not to wonder a little... after all she was only home 4 weeks before the hospital stay that is now up to 2 weeks and 2 days. If we have to start over with our attachment and bonding then we have no problem with that, but being able to just pick up where we left off would sure be a giant gift!!!!!

It was only about an hour later that she began showing signs of distress and very quickly she was hooked back up to the cpap machine and mask. 

By late afternoon they felt she was working way too hard and they immediately put her back on the ventilator. 

Sadness to my heart, you know, thats 3 steps back... but what she needed at this time.

By the evening I became a bit.... frustrated by the fact that they know her diaphragm is the cause of all this trouble her lungs are having so really why on earth are they waiting to see if it will fix itself? I said it last week when they re-intubated and I will say it again, she needs a pacemaker, she already had the ventilator in and was ready to go... why do they keep waiting to fix this? Im not a doctor, I'm just mom so I wait and wonder. We did finally hear this morning that the diaphragm nick is actually a severed nerve. Ivy's diaphragm is paralyzed, it's no wonder her lung is unable to function and remains collapsed.

The diaphragm is the most important respiratory muscle. During repirapiration, the diaphragm contracts and moves  in a pistonlike fashion. This motion forces the abdominal contents down and forward, increasing the vertical dimension of the chest cavity. In addition, the ribs lift the lateral aspect of the diaphragm during inspiration, causing the transverse diameter of the thorax to increase. As the diaphragm contracts, pleural pressure decreases, facilitating lung inflation. Normal diaphragmatic function accounts for 75% of air movement during normal respiration and is responsible for 60% of minute volume in the supine position. 

They would have done emergency surgery last night but she had been fed via the NG tube so it left us waiting with hope that they could squeeze her in today. 

This morning when I walked in the nurses told me that she was mad. Mad? They said she was kicking her legs and seemed agitated. I walked up to her and said her name and her eyes POPPED OPEN! She was way way down on her meds and it was obvious. She looked at me with more focus and she reached for her breathing tube with both hands in splints and no use of her fingers and she looked at me and shook her head NO. Bottom lip flipped and yes, mine flipped too! She was pleading for me to get that discomfort out of her throat. She settled right down when I lay my head on her bed close to her face giving her lots of mommy kisses and wispering in her ear. I told her all about how much of a hero she was to me and how we have never left her side and how we never ever will. I told her that she had new bunnies and chocolate and jammies and books and and toys and cards and stuffed animals waiting for her when she woke up. I told her that I loved her a hundred times and the nurses called the nurses who called the nurses to see how this baby in room 5-101 had gone in to a complete state of calm serenity when her mommy came in and comforted her. I asked the nurses to keep her sedatives far away and to let me do the calming from here out. They agreed that that was certainly best for Ivy.

But as usual things never remain the same for long in Ivy's room... it's the room of miracles and the room of constant events.

She was sound asleep for about and hour, or as sound as one could get with every machine in the room always beeping and the alarm of the respiratory machine (so loud!!) sounding. She started to cough so the nurse started suctioning. 8 syringes later she felt something was wrong. Cloudy white junk was filling her syringe. She called for emergency assistance, before I knew it their were 3 doctors and 6 nurses in the room and it was growing to many more. They felt she may have coughed up her tube or it was clogged with those secretions. Her sats all dropped so low that the doctor didn't want to wait to find out. They ex tubated and re intubated. She is supposed to have surgery around 3pm to place the pacemaker and plicate the diaphragm. With blood stained lips and ice cold legs, hands and feet, wrapped in her blankies, sarebear by her side, eyes open but in a complete daze, she continues to have the comfort of the one who created her, holding her in the palm of his hands, getting her through each and every hard step she takes and reminding us to be still and just know!!