Conflict of Interest.....

So much happens from one day to the next lately, that it's difficult to recap on here unless I'm able to write every day. And so much has been happening at home that makes blogging next to impossible (attempting to blog from the PICU? forget it!) So I'll try my best to fill you all in on where we are as of today. It's not succinct, and probably the most bi-polar post I've ever written. And such is our lives the last two weeks. So please, bear with me.

Yesterday afternoon, we had a scheduled trach change with Little Bird. We do this every Monday, and unless (knock on wood) something happens requiring us to perform this in an emergency and on a different day, Monday's it is, from here on in. MFH and I arrived at the PICU in plenty of time for it, as we wanted to hang out with her for a bit before getting into anything. It's better this way, because it gives her time to prepare with some cuddles, and us to tell her what's coming next. I hate springing anything on her like a doctor or nurse. 

We also got a call from Cheech, our respiratory therapist and home health supply coordinator once we're released. We'd met with him on Friday afternoon and completed the initial assessment of our house. The crib must be within so many feet of a major exit, and as close to the kitchen as possible. The oxygen can't be any closer than ten feet of any source of heat. Four dedicated outlets and a two hundred amp service line to handle the 1.21 gigawatts that her flux capacitor is going to throw out. It is a logistical migraine. Today, he wanted to give us a heads-up that the letters of necessity and scripts were received by his company, and our equipment is being ordered. And now, we await the barrage of FedEx trucks, and one more assessment from him before we can clear that to-do off our list. Our list, being a binder and six folders worth of so much that needs to be accomplished before they can give us the green light. One almost down, a thousand more to go.

As soon as we got on the floor, one of the nurses grabbed us and warned us that Little Bird had been placed under isolation a few hours earlier. Over the weekend, she began showing signs of illness. They took cultures, but we don't yet know what the exact problem is as of late. So, we passed off her car seat, which they asked us to bring it in order to perform a pneumogram on her while she's in it, ensuring that she can ride upright in a vehicle without incident. And we scrubbed in, and gowned up before greeting her. A sight for sore eyes, she was wide awake and doing her damndest to catch the mobile above her bed. The sutures and clamp from the repair surgery were removed on Saturday, and two weeks ahead of schedule. It was becoming infected even after the surgeon irrigated the wound. So they started her on a course of antibiotics and took them out, and her comfort level is now clearly visible. 

We also nagged the team to run some tests to prove what we had been suspecting for a long time, that she isn't able to digest lactic sugar. These results proved positive a week ago, and even though she was still crying in pain with every feed, her nutritionist was refusing to budge on switching her formula. She was on a preemie concoction, with it being mixed to double her caloric intake. And this was necessary because she burns so much energy healing and growing and breathing. But one of her nurses sided with us and cracked the whip, and as of Friday night, she was swapped to something else that is also showing definite improvement. Imagine experiencing a gall stone attack every single time you eat, which for her happens to be every four hours throughout the day and continuously during the night. But, no more belly aches, and no more tears. Two tiny thumbs up!

After we said our hello's, we jumped right into her care. Now, if you're eating, you may want to wait to read any further. This is about to get pretty graphic...

Little Bird requires suctioning of her airway as needed, or approximately six times an hour. The drawback to her being on antibiotics to clear up the wound infection is that it can also mask other illnesses. She wasn't presenting with a fever, but her suctioning needs have essentially doubled, and the secretions are discolored. This is what prompted the isolation and tests. I made two passes with her catheter, and typically that's all it takes to stop the rattling in her chest. It helped, but not enough. The catch twenty two with suctioning is that the more you do it, the juicier (sorry, but I warned you that it was gross, and this is the word we use to describe it) she becomes. It took another couple of tries to completely clear her trach. 

MFH set up her feeding pump and Farrell bag, and prepped a bottle in hopes that she would want to give that a try, too. I swaddled her, and we got comfy in the rocking chair while he gave her her four o' clock meds thru the mic-key. However, the sight of us in full gear was too much for her, and she became totally enthralled and distracted by the masks. 

"Are we playing dress-up today?"

"I want to play, too!"

So, we hung out and snuggled while exchanging info with her shift nurse. We gave her a run-down of where we currently stand in terms of our homecoming checklist, as well as a list of what we were hoping to knock back out of the way while we were there last night. We were awaiting a visit from our in-home nursing coordinator, so she could officially meet Little Bird, assess her needs, and get a first-hand background of our family before they walk into the circus that is our life. This was supposed to take maybe an hour, tops. And we decided to hold off on any further care until afterward. 

Our nursing coordinator arrived, and we immediately began filling her in on everything she needs to know before she can schedule our meet and greets with the nurses who will be assigned to help us. Now, this is where it gets interesting. Even though we do have the majority of Little Bird's care techniques under our belts, believe me. MFH and I walk out of that hospital every day, scratching our heads and seriously doubting ourselves. What if we are totally inept? Because there are plenty of times when it feels like we are. Throughout this vent program, we are being silently graded by the entire staff. But they don't tell us how we're scoring. It's only during the weekly staff meetings where we learn exactly how her team is viewing us in terms of all of this sinking in, or not. So far, so good. Though, it certainly feels like we are completely clueless most of the time. But, last night was a very positive confirmation to us both. We know our daughter. 

Little Bird's pulsoximeter began alerting that her oxygen level was below the norm. Her probe is taped to her foot, and it's pretty common for her to kick and it to give a false read. But even after adjusting it and the wire that attaches it to the monitor, it was still hanging around eighty. For Little Bird, the closest to a hundred, the better. Though, we don't want it anywhere under ninety. Her shift nurse came in and applied a warm compress, hoping that increased blood flow to her foot would mean a better connection. After it didn't, she went ahead and bumped up her oxygen and vent pressure settings. Still, the machine kept beeping, and the coordinator continued to ask questions about everything else. MFH and I sensed something wasn't quite right. Even though Little Bird wasn't showing obvious signs of respiratory distress, we noticed that she was becoming increasingly upset. She also began double timing her breathing, and her nostrils were beginning to flare. For her, this is sign number one. It wasn't the equipment. 

"Momma, I tink I gots dem boogers!"

I picked her up, hoping that maybe she was just intimidated by the new face in the room. But two seconds into trying to rock her to calm her down was all it took for MFH and I to look at each other and make the call. Let's go ahead and change the trach, right now. Something was wrong. We alerted her nurse that we were going to go ahead with the procedure and not wait any longer. As the machine began to alarm that her sats were dipping below seventy, and the coordinator continued to ask a thousand questions about the placement of the crib at home and the ages of the other kids, we blocked everything out. It wasn't an emergency, but we managed to accomplish the entire change in under two minutes. And that was all it took for Little Bird's oxygen level to increase to ninety five. No obstructions, but a hell of a lot of mucous came out along with the old piece. Enough to make breathing difficult. This, we knew. Because when Little Bird isn't getting enough air, she tells us by looking up at the fish on her ceiling, and concentrating as hard as she can. We've seen it happen enough times to know better, and to know that this is her text-book S.O.S. 

I am so proud of the two of us. We didn't skip a beat. And even her nurse, and the doctor who came in afterward to assess Little Bird seemed to concur. Last night was the first time that we'd taken charge of the situation, as knowledgeably equal to the professionals who do it every day. It was the first time where I truly felt one hundred and fifty percent competent and capable of her care. It was the first time in which we called the shots, and directed everyone else as to what needed to be done. Little Bird also agrees. She trusts us, and she let us know by completely relaxing her body during the procedure, extending her neck toward us in a move that made everything happen seamlessly. Right after the change, we wrapped her up, and positioned her onto her side, where she comfortably fell asleep.

"Can I has a nap time now?"

"I'll be right back, Mom!"

Suffice it to say, we didn't get any further in regards to our list last night. What was supposed to be an hour-long meeting continued throughout the duration of our visit. MFH didn't even get to hold Little Bird. With so much going on around us and all at once, Little Bird's health was our priority. I can tell you that hiring five strangers to come into our home around the clock is the easy part. Trusting them is damn near impossible. Maybe we're just being picky, but something isn't clicking with us and this agency. Last night's events weren't a critical situation, but it was enough for us to see, and to be able to say that we don't feel that this company has our daughter's best interests at heart. Changing her trach is not something that's taken lightly, in the least. Having someone standing beside us, and chatting the entire time? Well, put it this way. If you were Little Bird, would you appreciate that? Our focus needed to be on the baby, and it was. But, in that moment, I really didn't care to hear how many kids you've performed CPR on while driving down an expressway in the middle of the night. Or what your son is going to college for. Or your personal preference of ventilators. Or how many children you had hoped to have yourself. She was very nice, and I'm sure she's a wonderful person. But we already know, this isn't going to work.

So, we've put the ball into motion. Our Plan B. We're contacting our social worker and vent program coordinator and requesting an interview with another agency in our area. Both agencies have been on standby for us since the middle of December, and I'm thanking my lucky stars for options right now. I just don't want any conflicts once Little Bird comes home. As I've mentioned, we are on schedule for the projected date of discharge. But, should anything arise (like this), and we need the extra time, it's there. Maybe it will take us longer, but I'd rather everything be as perfect as it can be later. I'm willing to deal with any type of personality, just as long as it doesn't interfere with my daughter's health.

And, as I'm typing this, we just received word from the PICU that Little Bird's initial cultures came back positive for a tracheal infection. Bacterial, not viral. She spiked a fever an hour after we left last night, and has not been a happy camper since. They ran an x-ray of her lungs, and so far, they're clear. But she's back on vent support with increased oxygen, and an IV line has been placed. They also took a million other samples to test, but we won't know any more until at least this time tomorrow. I'm praying like crazy that this problem doesn't snowball, and that it remains under control. Tomorrow, she and I have a play date. Or, maybe a snuggle date. Depending on what she's feeling up for. No check list. No preparations. No more strangers coming in to meet her. Not until she's feeling better. I said so. 

 
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