Day 16 in the PICU

Pin It 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!!

Pin It

*updated* Heart on my sleeve and the tears came like a flood!

Pin It I am weak but He is strong. And thank goodness because it is not by my strength alone (my strength at all) that I have gotten through this. But I have to say, I have had peace beyond understanding this whole time. Peace that could only come from the Father. He created Ivy, how beautiful that the one who created her is the one who is comforting and healing her!! It just brings me such joy to know that He loves her more than anyone could ever love. Joy is eternal! What a perfect name for baby girl.

Today has its frustration and sadness. My heart is on my sleeve today because I can not stand to watch my child in discomfort or pain. I was told yesterday that if they intubated Ivy, she would be completely sedated for the 48 hour period that they needed to let her lungs rest. This was all ordered by the doctor on this floor, not my cardiologist and surgeon. He is very aggressive with intervention and is the one who tried to push the feeding tube on Wednesday. My cardiologists had surgeries all day yesterday so we never saw them. This doctor told me that a patient her age would try to fight the ventilator, pull it out and therefor would be completely asleep and very comfortable. She slept peacefully until about 10pm last night. She was up the rest of the night. I walked in very early this morning to a baby that was restrained by her arms and her legs, she was struggling, trying to wiggle all over the bed, crying without sound, grabbing at the tube coming from her mouth. She had pulled her feeding tube out twice already. Her right eye is so swollen on top that it looks like it is open when the other is closed, her mouth is practically taped closed, the feeding tube is taped in such a way that causes her nostril to be pulled upward and her skin is starting to bleed because of it. They did this so she would not be able to pull it out. Wouldn't her being asleep keep her from pulling it out. Why isn't she asleep. I have the most lovely nurse from the night shift. I think I snapped at her a little when I saw Ivy this way. No, I did snap at her. I quickly apologized, hugged her and began to sob. My heart is on my sleeve this morning. I feel weepy, even typing this, I just keep tearing up and having this ridiculous pitty party. I am Ivy's only advocate right now. She has no voice, but I do. Her nurse is a treasure. She hugged me and told me that Ivy has been through more in her short life than any one of these doctors have ever been through. She told me that we needed to demand that they up her medications and get her comfortable. Right now all they were using was what the ordinary 8 kilo child would need. But Ivy is not an 8 kilo baby, she is an 8 kilo toddler who has been a survivor all her life. She needs the sedation of a 13 year old boy!!! Yesterday I was promised that they understood that and that I need not worry. She was asleep when I left her last night. I do not usually leave her at 9pm but last night I did because she was OUT and I had nothing left, I was exhausted! I woke up at 4 and was back here before 5am. She had been awake like this all night. I had to lay on her to keep her from doing a back bend, this is not how I should be greeting her when I come in. This is not what I had expected to see. And I sobbed! Sobbed for my daughter who should be asleep and resting. 
The nurse reminded me that I am mom and I can talk to the doctors at any time. She reminded me that what I was feeling and thinking were very valid and the doctors needed to hear it.
So what was I thinking..... Besides what a cry baby I was being? Well, I was told yesterday that Ivy's lungs were indeed wet and not all open, but that it was not her lungs that were the problem, it was her heart. Ivy has a temporary pacemaker and it has been on her for 11 days. It is not working right any more, they usually change out the leads after a week and hers have not been changed. I was told yesterday that she will for sure need a pacemaker. So if it is not her lungs then why the vent?? And if she needs the pacemaker then why not put it in now. You need to be intubated for that surgery and she is intubated now so why not now? Her lungs are not working right because her heart is not working right... so can we please get her heart working right so that her lungs can do their job too? I realize that optimal timing would be when her lungs are at their best. Ivy is strong, she is a fighter, her lungs could handle the surgery, her lungs survived on 40% oxygen for a long time! Her creator created her so very special! I'm not a doctor, I'm probably clueless on everything I am thinking and saying. But rounds are in an hour or so and I am going to share my thoughts today and see what is the next step for my sweet child. After all, God made me her mommy to love and protect her. I can't just sit here and cry. Im done crying, It's time to put my big girl panties back on, its time to speak up.

Hear my cry, O God; listen to my prayer. From the ends of the earth I call to you, I call as my heart grows faint; lead me to the rock that is higher than I. For you have been my refuge, a strong tower against the foe. I long to dwell in your tent forever and take refuge in the shelter of your wings. (Psalm 61:1-4)

I just finished with the doctors. I learned that Ivy was actually being given the sedation of what they would give ME to totally knock me out! And now they have upped it and she is sleeping. She is getting what a 200 pound man would get, that scared me!!! But they assured me that just the fact that she can push and pull and move while sedated is fabulous and she will recover quicker because she has been moving. Thank you Jesus!!! They agree, get her off the vent. But not just yet. They are taking her for a more detailed look at the diaphragm. Remember it showed a nick on the ultra sound but they were confident it would heal on its own. They want to make sure it isn't bigger than a nick...
After that, they will make a new plan. The new plan may be to extubate. My cardiologist wants to plan for the pacemaker on Monday. He is still holding on to hope that she will not need this metal box for the rest of her life. I choose to hold on to that hope too. Thank you again for lifting us up!

Pin It