~updated~ Day 17 in the PICU ~updated~

Pin It I know... my blog post titles are getting kind of repetitive! Sorry :) this is just a quick post to let you know where we stand this morning. I will try to update after the doctors do rounds.
Ivy had a good night. She struggled with sedation as usual but her most awesome, loving, amazing night nurse Jodi (we have had her before when Ivy was just coming off ECMO and we LOVED her) took very good care of her and got her very comfortable!! 
The respiratory therapist said that they have Ivy weaned all the way down on her ventilator and from the breathing standpoint she is doing positively perfect!!! She has her sats right where they need to be and she is not really using the ventilator that is still in her throat. What does this mean??? It means that she is ready to be extubated!!!! It means that her diaphragm is WORKING!!!!!! 


But....... her lungs look worse today than they did yesterday. She has a lot of pulmonary hypertension. The lungs look very cloudy. She sounds major junky. She needs to cough up a lot of stuff but the surgery she had yesterday is very painful and she is still sore from the chest being opened on the 26th, so coughing is not something she is going to do voluntarily right now. She has a new chest tube from last nights surgery and it is still draining a ton. Not super abnormal but more than what they expected by this morning. Again, not a big deal at this point.
We are waiting to see if anything grows from the phlegm sample they took from Ivy yesterday. Prayers that she does not have pneumonia. 

She looks fabulous this morning. Just a tad bit of swelling and a big owie on her bottom lip. She bit it last night when they were wiping her mouth with the peppermint stick. My nurse was so apologetic and sweet about it. Last night when I was leaving, nurse Jodi came to me and said, ~I want you to know that I am overjoyed that Ivy finally got this surgery and that it went so well tonight, and I am even more overjoyed that I get to be her nurse tonight!! Then she told me this morning when she left that she would be back tonight and that she was going to do whatever she could to have Ivy again. 
~blessed~


Update  4:45pm


Little Miss Cutie Pants is doing good. She has times where she seems very uncomfortable but they are very short lived. She just makes very sad faces and kicks and shakes her head NO


We had an x~ray done just a few minutes ago and her lungs look much better than this morning!!! Much Better!!!!! 


They are giving her a steroid for the swelling in her throat, remember she had to be re~intubated yesterday when she coughed up her tube. So her throat was very swollen and raw. The steroids are relieving that swelling and getting her ready to ex tubate in the morning!!!! Yep yep! You read that right! The ventilator go's bye bye in the morning!! 


Jaime~ She is on diuretics, lots of it!! She will go home with it too. She gets Lasix on a drip and she gets one other in her line. I am going to mention to them during rounds tonight that I notice she is getting less Lasix than she was before, and ask why?
To make things even more similar to Miss E, if her lungs don't continue to look better they will be placing another chest tube. I remember E had her's forever!! And the chest tube that went in last night is draining a TON. It wasn't a huge concern this morning but her output has tripled since then! These Hangzhou girls will need to meet some day!! 


And last, before I close out for the day, her pacemaker! I can feel it! It is very strange... I mean seriously, they showed me the x ray and that was interesting, seeing this box and these wires in my baby girls body right there on the x ray. We need that pacemaker so seeing it didn't really seem odd. But.... feeling it!! I place my hand on her and there is this very hard, metal hard, panel! Right under her skin. She is soooo skinny, maybe some fat will cover it up? I just can't explain how strange it is to feel this hard panel, really strange. But we will find lots of ways to make her feel extra cool about her pacemaker!!  Pin It

He Brings Victory!!!!!

Pin It Praising God tonight!!! Whispering in baby girls ear and Praising the King!!! Whispering all of your names, no matter who you are or what you believe, we are all one, and Ivy will always hear about the parade of angels who loved her from Arizona to Dhabi, UAE and back!!!! 

She is back in her room and resting. My little warrior princess had her eyes open when they rolled her back to her room!! She does not mess around! 

The doctor used the same incision for her pacemaker and her diaphragm. They are going to wean her off the ventilator as they see her doing more on her own and we hope to have her ex~tubated in the next 48 hours!! 


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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!!

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