Slumber Parties and Murphy's Law....

On Friday morning, MFH and I packed our jammies, and headed to the PICU for a much anticipated and long awaited slumber party with Little Bird. We've just completed months worth of medical training, and we were pretty excited to show off what we know while rooming in with her. The ultimate measure of whether or not we can successfully handle bringing her home, this is a designated twenty four hours of only the two of us, taking on every aspect of her care ourselves. No help from the staff unless we cried 'uncle', and pushed the panic button. The nurses were to be viewed as our 911.

Days ago, the floor became so packed with patients that we were bumped over to the post-op observation room. We were hoping that our vent program coordinator would have been able to pull off getting us a private room for this, but when we walked in, we knew we were shit out of luck. She was still in the bay; the busiest area in there next to the nurses station. And our one shred of hope to get any kind of rest during this trial was bumped out the window. But the issue wasn't so much about privacy. 

As soon as we approached the baby, we noticed that she was clad only in a diaper, and had a splint on her left leg. An IV line had been placed just before we got there. My eyes immediately sought out the contents of her suction canister, which pretty much explained why before any of the nurses had the chance to. Tracheitis, again. Something that she'll always be prone to getting. Kind of like strep throat, but with an alarmingly high risk of spreading to her lungs. And she was not a happy camper. 

Shhhh!

"I doesn't feel good too-day, Momma"

"Can I has dem luvins?"

Sweaty with a fever, and unable to get comfortable, she looked a hot, temperamental mess in between the saddest boo-boo face I ever saw. Chad (our shift nurse), came over to fill us in. She hadn't slept at all the night before, and she thumped her splint off of the mattress in a means to tell us to pipe down. The attending physician on the floor ordered a course of high-dose antibiotics, along with the standard Tylenol to help break her temperature, and ease the pain she has when she coughs. At that point, we expected our overnight plans to be cancelled. A few minutes later, the senior respiratory technician from our home care company arrived with more of our equipment. We were also supposed to take a little road trip. A car trial of packing up Little Bird and her posse, and taking a spin around the parking lot to ensure that we are prepared to do this without future outings turning into Chinese fire drills. Right after he walked us thru the mechanics of our oxygen cylinder and heated moisture exchange, Marie walked in wearing a facial expression that said it all. 

Because the baby is now sick, our car trial was understandably postponed until Monday afternoon. We both totally expected to hear that. We also assumed that because of the trach bug, our date of discharge was instantly pushed back. But our program coordinator told us not to panic....yet. To know Marie is to love her, and I can tell ya, the woman certainly knows how to make things happen in that hospital. But I'm beginning to think that this may even be beyond her control. She said that it was yet to be decided, but that as it stood, they were pumping forty eight hours worth of the strongest possible medicine into Little Bird, in hopes that it would clear up this infection faster. Our in-home nurses are scheduled, along with our respiratory therapist, to meet us here at home on Tuesday. Nobody wanted to make any hasty judgement calls. She told us to stand by with an open ear, because Tuesday was still what we were shooting for. But we wouldn't know for sure until Monday, pre-driving test. So, we signed the paperwork, agreeing to the terms of the room-in, and Marie left for the weekend.

A few minutes later, our audiologist came by. Last week, Little Bird underwent the standard newborn hearing screening, and very much to our surprise, failed the exam in her left ear. Chad tried to make us feel better, and blamed the results on possible background noise from the vent. Though, at the time, she was utilizing a Mapleson bag, which is ten times quieter than her machine. I couldn't stop worrying about this. Not that it would change a thing. If Little Bird didn't have ears at all, she'd still be perfect in my eyes. I wouldn't love her any less. Still, it was really unexpected, especially at the last minute. MFH and I always knew that she could hear...something. From day one, she's always responded to our voices. We see her startle with loud of sudden sounds. So we knew that, worst case scenario, it would be a partial loss.

Taking Her Mind Off Of It With Movies

Yep. She's Still Fascinated By Fingers!

Don't ask me why they opted to re-do this test at her bedside, and in the busiest room in the packed unit, on a Friday afternoon. But they did. I must have had a certain, get-the-fuck-away-from-my-baby look about me. Because as the hearing specialist and her partner were setting everything up, a senior doc from infection control came by with a slew of residents. He introduced himself, but I was too busy trying to simultaneously suction the baby and calm her down to remember what he said his name was. As I attempted to hold Little Bird's head still while they placed a probe in her ear, he asked me how she was feeling. I didn't mean to come off like a total bitch, but must have when I replied, "Well, she's struggling to breathe, didn't sleep all night, and has a fever. She doesn't feel well!". He was visibly taken aback by my reply. To be honest, I kind of was, too. But I didn't have time to explain it to him, and he simply took the tongue lashing, mumbled an apology, and got the hell out of Dodge.

"I needs huggles"

No Pinching The Baby!

In hindsight, I now understand why he came over to our bedside. Later that night, Chad managed to pull a rabbit out of his ass. A.K.A., a pull-out cot and a chair to finally sit down upon, as we'd been on our feet all afternoon. MFH and I had just gotten the baby settled and asleep, and were about to somehow attempt the latter ourselves when a very green fellow popped her head thru the privacy curtains. Apparently, she pulled not the short straw, but the shitty end of the stick, and was stuck giving us the news. The forty-eight hour dose of meds wasn't going to be enough to defeat the boogies. Her team had ordered a full, ten day course. And because of this, our release date was thereby pushed back by almost another week.

"Oh, my! What big eyes you have!"

Giving Kisses!

I think she was expecting me to totally tweak out. No word of a lie, as soon as she finished that last sentence, she took two steps backward. I kind of just looked at her, and said, "Okay". What could I have said? Freaking out isn't going to make Little Bird any better. And it wasn't the messenger's fault. By then, I was exhausted. And I knew that Marie had gone to Philadelphia for the weekend. So, there wasn't much that I could do, besides accept it, and thank her for letting us know.

I'm not going to bother our coordinator with this right now. She's busted her ass for us enough the way it is. For instance, the morning after I'd posted our actual date of discharge on Facebook? Our nursing agency called to inform us that we didn't have anyone able to fill our night shift hours. Without twenty four hour coverage for at least the first seven days, Little Bird absolutely can not come home. And I'm almost certain that all of our back-up does this secondary to their day jobs. I don't know how Marie did it, but by later that evening, not only did we have night shift under control, we are now also abundantly covered.

Can't Get Comfy :(

Reservations For Three, Please!

Not Much Space...

...Or Privacy, But We Made It Work!

Word of the sudden change of dates spread throughout the PICU rather quickly. Over the next several hours, so many different nurses stopped by express how bummed out they all are, too. But something tells me that this is far from being the end of the world for them. To say that they've bonded with Little Bird would be such an understatement. One of our regulars, Megan, has become so attached that she asked us if we would mind if she applied with our provider, in hopes of specifically being assigned to our home care team. If this were any other hospital, I'd probably be filing a restraining order right about now. But MFH and I both encouraged her to do it. We love Megan. Megan loves Little Bird. And Little Bird absolutely adores her. Even when we're not on her rotation (like that morning), she always comes by to hang and help out. The baby instantly recognizes her, and cracks the biggest smiles when she see's her. To me, that alone is worth every minute.

In between sending MFH on numerous coffee runs, we tagged teamed the routine of Little Bird's care throughout the night and into this afternoon. The tracheitis occurring now, of all times, turned out to be a bit of a blessing in disguise. She's just about guaranteed to get this, a lot. So it gave us a really good feel for how to handle it happening once she's home. With ventilated children, even a simple head cold is never simple. Minor illnesses can turn into major, life-threatening scenarios almost instantly. We both kept a very close eye on her pulse ox number, and as expected, it steadily declined. I managed to sleep for about three hours on the pull-out, while MFH stood watch over our sleeping daughter. At quarter to six, Saturday morning, he woke me up so that he could wrastle us up some more caffeine. Her oxygen saturation was hovering at ninety one. Not technically an emergency, but the monitor will alert at eighty nine, and we were trying to prevent our kid from turning blue. I know it's really nothing much, but it felt pretty damn good for me to be able to say that I knew what to do. All she needed was a new probe, and a temporary boost of an extra half a liter of 02. When Chad came over to check on us during shift change, I got two thumbs up!

Finally, She Sleeps

The Cool Side Of The Pillow

And you know you're learning something when random strangers start asking you if you work there. During Little Bird's ear exam that afternoon, her audiologist did. When I laughed and told her I was her mother, she was shocked at how much of everything MFH and I know. It really is sinking in. A couple of hours before our dry run ended, her ventilator began to continuously beep. High peep (from water in the line). Low pressure (a leak somewhere in the circuit). Back and forth. I was filling out paperwork when it alerted yet again, and MFH went over to further inspect it. All of a sudden, a true alarm, and an ominous noise we've never heard before. Very much like a jet engine. All MFH had to say was "Oh, shit! The vent is failing!", and I was right next to the baby, ambu-bag in hand. Turned out, we blew a temperature sensor. But at the same time, Little Bird sensed the loss of air pressure in her line. When this happens, she panics, and tries to hold her breath. Her oxygen level dropped fairly rapidly, but it only took MFH two seconds to fix the issue and once again, increase her 02 thru the circuit. No episode of House. No need to manually breathe for her. We had it under control. And given the situation, it's something I'm very proud of. Me. The girl who hated high school. Who takes her teenagers shopping with her so she doesn't have to calculate sales percentages herself. Who never met a science class she couldn't sleep thru. Suddenly more than capable and willing to calculate her daughter's sodium chloride and diuretic dosages by weight and in a single bound. Not afraid to press that button on a piece of equipment that sustains her child's life. Who would've thunk it?

Whoops! Forgot About The Flash!

Hangin' Out With Momma

"Daddy's asleep! Quick! Let's put his bra in the freezer!"

Chillaxin'

On that note, I'm going to end this here. Before I say anything else to jinx Little Bird's homecoming any further. We're really praying that Marie can divinely intervene on our behalf, come Monday. That something will change and everything will continue according to the original plan. Have you ever heard that saying, "Don't know whether to shit or go blind"? That pretty much sums up the emotion to this craptastic news. For how badly I want to bring Little Bird home as scheduled, I want her to be as healthy as she possibly can be when we do. It was so difficult to sit her siblings down this evening, and explain to them the events that just transpired. But it would be so much worse if she came home and had to be readmitted right away. We'll have already awaited this event for two hundred and forty one days. I just need patience, and to keep reminding myself that it will only be a handful more. 










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