Thanksgiving

Thankful we’re getting out of this place!

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Happy Thanksgiving, everyone!

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Waiting

That’s what we’re doing right now. Waiting and waiting. Hopefully we’ll have a care conference tomorrow or Tuesday to come up with a plan.

Our concern is figuring out how such a generally weak and unharmful bacteria get into her bloodstream in large enough quantities to make Evie septic. Most people who get lactobacillus infections are severely immunocompromised and have a central line that gets contaminated. Evie’s mild immunodeficiency is only in the virus fighting part of her immune system and she did not have a central line at the time.

The only logical conclusion is that the bacteria came from her gut. Somewhere in her small intestine there must be damage. The trouble is finding it. You have multiple feet of small intestine and we may be looking for just a small area of damage or thinning. And there’s no way for us to know right now if this is something that will heal on its own or not.

Hopefully lots of questions will be answered over the next week and it will be abundantly clear what steps need to be taken. Please pray for wisdom and ingenuity from the doctors as they deal with our very unique little girl.

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Sister is here now!

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Evie helping the nurse look at her PICC.

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Evie loves Daddy's helicopter!

PICC

Evie just got done getting her PICC and I’m waiting to see her.

I know you’ll all be shocked, but Evie’s artery was wonky and they really got lucky in placing it. He said she shouldn’t ever get one placed when a doctor won’t be available to potentially use a guide wire.  She has sharp angles where she should have gentle curves. Nothing’s ever simple with her.

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This was (I think) her 30th trip under anesthesia. She had asked for a cat before we took her back, so I grabbed a kitty while she was under.

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It’s a pretty snowy day here!

Lactobacillus

That’s the bacteria in her blood. And yes, that’s what you find in your yogurt. It’s a bacteria usually found in the gut and rarely causes problems. It’s definitely weird, so they called Infectious Disease. Once they looked at her history of recurrent intussusceptions, they felt it made perfect sense that some bacteria had escaped her bowel at a weak or damaged spot and gotten into her blood. The question then is where is the damage and will it heal on its own.

The plan for now is to do a full 10 day course of IV antibiotics. So 7 more days. We’ve decided to place a PICC line which has less chance of going bad than a regular IV. She’ll be an add on to the schedule tomorrow and have to be under anesthesia to have it placed. We’ll just continue monitoring her and see what she does this next week.

Thank you for all the prayers. Evie is in good spirits and we’re grateful for the excellent care she’s receiving.

Sepsis

Unfortunately, Evie’s blood work showed that her fever wasn’t from a virus, but from possible pneumonia and a blood infection. We’re treating with IV antibiotics and hopefully will know the specifics from the lab this morning. Her fever finally came down last night after being 101-104 since Thursday morning. We seem to have caught it early which is good. Had we been home, I never would have suspected a blood infection and it would have gone on much longer. Scary that she doesn’t show more clear symptoms. Thank you for the continuing prayers!

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She was in pretty good spirits last night when her fever came down, giggling at The Fresh Beat Band.

Ups and Downs

Evie’s test on Tuesday came back normal so we still have no answers. Since she was doing really well, we started working on weaning her off the TPN to go home, but Evie apparently wasn’t ready and spiked a fever this morning. Poor thing is so worn out. So now we’ll monitor this new turn of events.

Thank you for all the prayers. I apologize for not being consistent with updates. Sometimes one more thing is just too hard.

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A Rough Week

I apologize for the lack of updates this week. Sometimes, it’s just too hard trying to put things into words. We still have no idea what is happening with Evie. Once again, all testing seems to show a perfectly healthy little girl. She is coming out of this episode and doing much better today. We have another test scheduled for Tuesday which I’m pretty sure is done under general anesthesia and hopefully that gives us some answers. If not, then I imagine we’ll head home and have to wait for all of this to happen again. We’re frustrated, but not with the hospital, just with the mystery. And we’re very worried about what is going on inside Evie’s complex little body.

We did get some good news with her scheduled scopes we did on Wednesday. The inflammation in her airway, lungs, and esophagus was significantly better. But as much as ENT would like to work towards getting the trach out, her pulmonologist thinks the trach needs to stay a while longer to keep Evie’s lungs healthy. We expressed that the only thing that saddens us with the trach is how difficult it is for Evie to vocalize and how much that holds her back so the decision was made to remove some of that scar tissue above Evie’s trach to open things up just a bit more. This should make vocalizing much easier and relaxes our timeline to trach removal. It’s important to remember that the trach is not what holds Evie back, it’s the other issues with her airway and allergies and such. The trach itself is what keeps Evie’s lungs healthy, allows her to run around and breathe with ease, and live her life. It also keeps her safe during sickness and surgeries. We LOVE the trach. We’re not anxious to see it go. We’re only anxious to lessen its effect on her communication. So that surgery along with checking on her lungs again will hopefully happen at the beginning of the year.

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Being Admitted

Well, Evie is going to be admitted. An abdominal ultrasound showed two intussusceptions that weren’t locking in place, but just happening multiple times. At first the doctors said that that is totally normal and not concerning, but in combination with her symptoms, they’re not sure. It makes sense to us since her symptoms are basically milder versions of when she’s had intussusceptions in the past. It will not be an easy task to convince the docs to throw out the textbook when it comes to Evie, though.

Leaving Early

Unfortunately, though Evie handled the respiratory side of this sickness beautifully with the help of the CPAP, she started vomiting once that subsided. We can’t seem to get her back to full feeds and she’s lost a lot of weight. We were supposed to head to Cincinnati tomorrow for follow-ups this week, but after she got more and more lethargic, we decided we didn’t want to wait. She’s stable, so we’re just driving there ourselves tonight. Prayers for a safe drive please.