let's make a deal

We are settling in with our new machines. Mya gets vest treatments twice a day which she thankfully loves and we are monitoring pulse and oxygen saturations at night. We have had to adjust the limits on the pulse alarms down twice as her baseline heart rate is much lower than normal. Even with a low set at 45 she still alarms in a deep sleep on occasion (i.e. always at 4am) so that has taken some getting used to. My first conversation with the pediatrician went some thing like this:

Me: Hey, the hospital set the low heart rate alarm at 75, which is ridiculous. We can never turn it on, how about we move that down to 45.
Dr A:  45! I think no lower than 55. I think you need to get up for 45.
Me: Well what happens then is I will get up, see that she still has a heart and then turn it off. She spends most of the night below 55. I honestly only care that she is breathing. I can't know that if it is off.
Dr A: Okay, how about we split it and go with 50?
Me: Sure thing.

And for the next 2 nights we just turned off the machine at 4am. So now it is set at 45....anyone who would like to provide night nursing can push me on this. We are tired. See now we have 3 things that may beep in the night. About the 4th time you get up it takes a really long time to figure out which one is screaming at you. We are also learning that her oxygenation dips more often than we were aware, even while receiving support from her equipment, or perhaps more unsettling, while hanging out in the living room. We try to find comfort in the idea that this has likely been going on all along, it is just that now that we have a monitor we are aware. As comforting as that can be...

But she has been sleeping at night and pretty alert during the day so we have been grateful for that. We are starting the medication Keppra, an antiepileptic with side effects in the lower severity range and are weaning zonisamide so we can keep our anti-seizure med count at 3. She is back at school now and reportedly did really well today. I have returned to my full-time job of requesting denial letters for benefits I realize we don't qualify for simply to have that letter in hand to send to another agency so that we can not qualify for their benefits, too. Because, like 3-year-olds, all 4-year-olds require 24 hour supervision...and a pulse-ox monitor, and vest treatments, and occasionally to be shuttled across the house for supplemental oxygen. We got this, no worries.

Loving my jiggles

The swings are out!

Waiting on discharge paperwork

Mya and I are snuggled up in her hospital bed waiting on discharge. We are going home straight from intensive care as the types of things they handle when you step down to the floor are really her baseline and we can do all that at home. They pulled her IV over the weekend and all that remains is her PICC line to be removed before we can go home. With far fewer tubes and lines attached snuggling up is much easier and so we are sitting here jamming to Jack Johnson radio on Pandora and people watching from our corner room view down one long hallway of intensive care. She has been smiling these last few days, easing through her vest treatments and getting back to a full feeding schedule. Yesterday her brother and sister were here and she turned to each of them when I held them up to her bedside as they told her they loved her. I think Mya would say life is good.

My birthday was last week. I spent it here, obviously. My brother-in-law called to wish me well and asked me how it felt to be 28. Again. No, I am 33, I said. I won't wish away those 5 years. I have been older than my mom for most of them as she still claims 29, but 33 is fine. When I turned 28 I was still praying for a baby. Octomom was having them 8 at a time and, dear God, all I was asking for was one. We all know how that turned out and how I was blessed with not only 3 babies but also a life intermittently littered with views down the hallways of intensive care, be in neonatal or pediatric.

As usually happens with these visits, we will be taking some more equipment home with us. We are going to get set up with portable oxygen and the pulse oximeter that keeps getting denied by our insurance. An airway clearance vest will be delivered to our home this afternoon. We will only need to use the vest 'once or twice a day' I am told to hopefully prevent these sorts of visits. Sort of like the suction machine I only hold in my hand for 30 minutes in the morning and the medication (that doesn't help) that is only dosed 4 times a day and the 2 hours of standing and the list that really does go on of everything this child needs that doesn't enter into the routine of her peers. I am going to work on listening to breath sounds so that I can identify any changes. I feel a little more like a nurse every time we leave here but never less like a mother. She is amazing, this little girl. She is covered in bruises from head to toe from failed IV and central line attempts. Her voice is hoarse from irritation from the tube that went down her throat to keep her alive these last 2 weeks. And she is smiling. I could go on about all that these kids have taught me but suffice it to say that in no way would I wish away these 5 years. I am happy with 33.

my little rockstar

Mya has been on room air without support on and off today and is doing fabulous. She was extubated on Friday morning. I will say that was one of the more tense moments we have had during this stay. We learn a little more each time we are admitted and we learned this time that she does not extubate smoothly. The floppy airway issues she has at baseline combined with irritation from a week and a half with a breathing tube meant that she was collapsing her airway and gasping for air...to put it lightly. They were able to bag her and get her onto bipap and with some repositioning keep from having to re-intubate, but I would prefer not to repeat that experience any time soon. We were able to move her pretty quickly to her own mask which she much prefers to the full face mask they were using.

But TODAY she was a rockstar. She spent most of the day without support. They took her off bipap after rounds this morning and she only needed a little oxygen support with nasal cannula a few times throughout the day. She is on a bit of morphine to help with withdrawals from some of her sedation meds and continues to receive respiratory treatments but otherwise she is doing great. I am loving how alert she is and sort of want to toss her over my shoulder and march her out of here. Keep up the good work missy.

running out of steam

We heard rumors of extubation yesterday. They stopped her overnight feed at 4 a.m. last night in case they were going to give it a go. But then they didn't give it a go. So they are doing the same tonight. And it feels like we are never getting out of here. Like when there is no little twinkling light at the end of the tunnel you don't have any expectations but then when the little light appears and then fades away you want to scream at it to come back. COME BACK LITTLE LIGHT! So maybe it will happen tomorrow and maybe she will respond like a rockstar and we will go home this weekend or early next week or maybe we will spend eternity living out of my purse and backpack and sneaking granola and m&m's in the 'no food zone' and making forbidden cell phone calls. All I really want is to hold my little girl, little light, so let's get this thing going.

I have 4 year olds!

My birthday girl had a birthday banner and balloons when I arrived this morning. She also had a slightly improved chest x-ray and a bath. Yesterday she had some more lung collapse but that seems to be improving. They increased the respiratory treatments by adding a vest treatment to jiggle some of the junk loose. So she is getting treatments every 2 hours today instead of 4. She continues to fight the tube when she comes off sedation (wouldn't we all) and they continue to struggle to get her to just the right spot to keep her comfortable. She was over-sedated this afternoon and had some trouble holding her blood pressure and so they had to make some more adjustments.

Ella and Clayton are going to come for a visit tonight and then we are taking them to dinner close by to celebrate. The hospital child life team came by today with wrapped gifts for each of them and gift cards to cover our dinner so that was a nice and unexpected gesture. The hospital is not the best place to spend a birthday and dinner out without the complete team on their day feels a little unsettling but we are making do. It is so good to see Mya looking better. For the record, she did have a mini birthday cupcake in her blend today. Happy Birthday to my babies. I am so proud of each of you.

Just let me sleep

Mya is having a pretty quiet weekend. We seem to be moving backwards slightly in terms of ventilator wean. They have been increasing some supports over the last 2 days on and off to handle some drops in oxygen saturation. She had a little bit of lung collapse on Saturday that is looking much better today after increased breathing treatments. She is starting to have some 'leaking' around her breathing tube which means she is moving air on her own more. Yesterday they tried to wean her off of some of the sedation meds but she would get very agitated by the tube each time she woke up and so today they increased everything again to keep her sedated and comfortable. Kids with underlying neurological conditions tend to have a harder time and require longer periods of intubation, and so what they are seeing isn't all that unexpected or concerning. They are also starting to figure out that some of the things they are concerned about just may be her baseline, like her low body temperature. But in the meantime she is enjoying her cozy warmer. I was starting to get a little bit concerned with the number of seizures I was seeing yesterday in the brief periods she was awake and so having her more sedated through the weekend will help with that. Her neurologist tends to be around during the week and I would prefer to have those conversations with someone who knows her.

Keep up the good work Mya and let's get you out of here.