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Thursday, March 26, 2009

101 days old...

Not feeling well... - March 26, 2009

Blogging from Connor's bedside. Hope you've got a minute...
Supposedly they have wifi, but it's super weak and the connection goes in and out. :(
We'll see how long I have patience for this...

Monday morning at rounds, Brian told the staff that we really needed to be making some progress towards his discharge (mostly for our sanity and well-being). They agreed that the end of this rollercoaster was most certainly in sight, and immediately began taking steps to bring us up to speed on some of the equipment and procedures we might have to bring Connor home on. We started making plans to learn all of the caretaking steps. At 4pm, Connor had a great assessment with the speech therapist, and she suggested that he come off the thickener, and just drink regular formula (breast milk all gone) every 4 hours.

About an hour after his feeding, while I was rocking him to sleep, Connor had a really bad spell. Suddenly his alarms are screaming, and his nurse is immediately yanking him from my arms and administering oxygen. He turned a bit dusky, but he came back okay after a few minutes. I've never been so scared! They theorized that he'd had a little reflux, it had gone down the wrong pipe and he held his breath for too long.

Still shaken up, that night I just had this sick feeling that we were going to receive a bad diagnosis soon. Sure enough, his night nurse called about 6am the next morning. Connor had developed a fever at 4am. They'd drawn up a bunch of labs and things were pointing to a raging infection.

You might remember that we dealt with this previously... just about 2 months ago. Very similar infection, but this time it was like one minute he was happy as a clam, the next minute his heart rate was dangerously low and he stopped breathing. Since that spell on Monday, he just hasn't been the same.

Connor has a bacterial infection. They have found gram negative rods, specifically e coli, in his urine, blood drawn from his PICC line, and blood drawn peripherally. You can read more about it here and here. So, not only does he have a horrible UTI, he has this infection in his blood. Last night they were even calling it sepsis. We don't know what came first, the UTI, the blood infection, or a contaminated PICC line - and there's no way to know for sure. One thing's certain, he caught it here in the hospital (just like I caught my similar infection after the c-section). Infections just explode within his body because his immune system, due to being premature, is so much weaker than that of a normal newborn. He desperately needs to beat this infection, restart his feeds, and rapidly progress towards discharge - we don't want any more scares like this one!

He's had a barrage of tests performed already... a spinal tap (his 3rd), an echocardiogram, an EKG, a chest x-ray, a kidney ultrasound, numerous blood gases and CBCs, blood clotting factors, blood cultures, urine cultures, stool tests, an RSV culture, and I forget what else (there's a whole lot more)... probably another $25K just in tests these past 3 days. He's received 2 platelets transfusions and 1 blood transfusion so far.

Because bacteria will cling to any foreign objects in the body, his PICC line was removed yesterday. Now Connor has 2 IVs - 1 in his hand, 1 in his foot, both taped down to uncomfortable boards - to manage his needs for transfusions, medications, and IV nutrition/fluids. If these IVs even last that long, they have to be moved every couple of days. Once the infection has cleared, his doctors will consider whether or not his PICC line will be restarted (we're thinking that's 100 % likely).

With his IV nutrition stepped back up, his little body is all swollen from the fluid increase. He's been much more pale and lethargic, and is not tolerating any handling (which is pretty much all day long for all the tests they're running) very well at all. Brian and I have only held him for about an hour total today, because that's about all he could seem to handle.

Wednesday evening he was having bradys and desats too frequently, so off came the nasal cannula, and now he's breathing with a CPAP. He last used one during his first 2 weeks of life.

His feeds were stopped, so he's beyond starving. When they possibly begin them again tomorrow, he'll be on a special pre-digested formula called Pregestimil. Hopefully this is only temporary, and he'll be able to go back to the preemie formula.

The diaper rash completely broke down to an open wound and has been bleeding off and on. He's back on IV nutrition, off food (due to the infection), so he's not pooping as much. We hope this allows his bum to heal. There's a butt plan of action posted at his bedside for all to see regarding the ointments and special wipes they have to use at every diaper change. Desitin just won't cut it for this kid. Occasionally, they rest him on his stomach, open up his diaper, and position an oxygen mask on his bare bum. But... he's not much for breezes down there.

As of today, he's been holding his own on his temperature, so the fever seems to have subsided. Today was also the first day of negative blood cultures (meaning the specimens they drew yesterday have not grown any signs of the infection. They will consider his infection and sepsis subsided once they get 2 days in a row of negative cultures (so, we're halfway there). They won't be stopping his 2 antibiotics until 14 days from the 2nd day of negative cultures. He will likely be weak and lethargic for several more days, while his little body recovers from fighting the infection.

There's much more going on with him right now... billirubin elevated even more - he's very yellow, calcium and phosphorus way off, potassium too low, sutures poking from his incision, etc., but those are pretty much the highlights. Hope I haven't put you to sleep...

Unfortunately, during the recent course of events, we had to become "those" parents. Through this whole experience we've tried really hard to never become high-maintenance or demanding of the staff. I think we've done a pretty good job so far. We've been here 101 days after all.

An incident concerning Connor raised our blood pressure a bit on Tuesday, and we had to voice a concern... within minutes a solution was in place. We've been so amazed and impressed with the staff's responsiveness and sensitivity to the issue... at every level, from the secretaries to the nurses to the doctors to the managers. They really have renewed our faith and belief in them that Connor is receiving the best care possible. Maybe they're aware we're cognizant that Connor is not their only patient and we're not the only parents they have to deal with today... that we don't want to be too demanding of them... but we have to speak up and fight for Connor's well-being.

They've bent over backwards to ensure that we are comfortable with his line-up of nurses for the next 10 shifts. His primary nurses have been calling on him during their time off just to check how he's doing. They truly care about him, and their hearts break as much as ours to see him struggling. Meanwhile, they've offered us a room for the night, right across the hall from the door to the NICU... allowing us to take easier shifts at Connor's bedside, and not crawling out of here well past midnight.

So, Brian's got the first shift of sleep tonight... I sit here, finishing up this novel, hoping I don't give myself whiplash every time his monitors alarm. (Right now they're red alarming - most serious - about every 90 seconds due to some technical issue with his leads - it's beyond annoying... I'm going to end up in asystole myself!) It is nice being so close to Connor this time of day, knowing I've got all night with him...

Thanks so much for your increased prayers, comments, and messages in Connor's behalf. We know they're helping him to improve... they're most certainly helping us hang on.


Audrey said...

You guys are being so strong and are such an example for Clint and I. We've got you in our prayers. I know everything will be ok and this is just something that will make sweet Connor even stronger for when you come home!

Darrin said...

Oh, Aim, I'm so sorry. I have been praying for him and thinking about you guys. He's a strong little guy, and you are too (girl!). :)

Christy said...

I'm so sorry you have had to keep riding this roller coaster! It must have been so frustrating for you to have him get a hospital acquired infection like that (some one didn't wash their hand or glove up).

I hope he gets to come home very soon.

Nate and Kelly said...

Thanks for taking the time to update us... I've been so worried for your family this week and have thought and prayed for you continually. You are so strong-- and so is your little one. Keep the fight!! Prayers and well wishes from us.

veronica said...

Thanks for updating about Connor. I am amazed at your strength. I'll continue to pray for Connor (he's a fighter)and for you too.

Megan B ♥ said...

Oh, Aimee! I want him out of there so badly, safe at home with you. I'm very proud of you for advocating for him so strongly. I wanted sooooo much to never have to be "that parent", and I tried soooooo hard to avoid it for as long as possible, but sometimes you just have to be! Trust your instincts and you won't go wrong! We're praying for him and very disappointed to learn of all of these developments. But I'm so happy he has had one day of negative cultures! Yay!! Thinking of you guys all the time! He'll pull through this and do great!

Poage Perspective said...

so sorry guys. know we're thinking of you and praying for the roller coaster ride to stop and turn into a smooth ride home for Connor.

Anonymous said...

I have been so worried about all of you! I am sorry to hear about all you are going through. It is okay to be one of those moms. You have every right to be. I finally was toword the end and it was the nurses who encourage me to speak for Natalie. So I had a breakdown moment right in the middle of the NICU during rounds. He is a very strong little guy and will pull through!! We are cheering for him!

Scott said...

Yeah bilirubin! A nephew after my own rotten liver!

He'll mend up nicely in a few days I'm sure. Keep posting!

tiburon said...

Your strength is amazing. I can't even imagine all the things you are going through. Poor Connor :(

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