Philo in the ICU Information

Sunday 5:30 update:

We are in a holding pattern of a rollercoaster upswing. Philo had a good day overall and the doctors were sufficiently happy with his response to treatment to bring his air support down to CPAP. He didn't like that very much so after a few hours they switched back to biPAP as a preventative measure to keep supporting his body effectively fighting the virus. So we're progressing but not out of the woods.

LouLou had a rough night coughing herself awake and feverish. She's sick but not hospitalization sick.  She came in for suctioning today as an outpatient.

Danny's mother came to town today to support. Jim helped today but had to go home again.  The big children are doing ok, from what I hear. If you see them please report back ;).

Today I am counting my blessings to keep my spirits up. These are my top ten things that I am choosing to focus on rather than be consumed by fear and self pity.

1. Crunch bars.

2. Living close enough to this amazing hospital to go back and forth to home easily.

3. Being on shift for the democratic debate! Why is this bringing me such joy?

4. Being stuck here during a big news weekend. Romney gave that speech like 500 yards from me! I shoulda had him come over and give Philo and the rest of us blessings.

5. My support network, near and far. I feel supported. 

Ok I only have five. Five will do for now.

In other news, the RT is Katy perry's doppelgänger. 

Sat 11:25pm update: Philo has been cresting for the last few hours and I am feeling hopeful we have hit an upswing that will last and we can start working back down the below degrees of sadness chart. His eyes are open and he is peacefully looking around. He has been up and down all day but mostly up tonight. 

When I met Danny he'd just picked up Lou and was concerned because she looked sick. We loaded back into the cars to the hospital and she was checked into the ER with "work to breathe" symptoms. They evaluated her, suctioned her and sent us home with a prescription to the suction clinic run by respiratory therapists. Like a fifteen minute ER for whenever she gets too stuffed up. Miracle of modern medicine. She is home asleep snuggling her humidifier ;).

When I came home my house was cleaned and my dishwasher running and there was fresh milk in my fridge and treats on my porch and my kids were asleep at my friends.  I am swimming in gratitude. My father has asked people to please remember Philo in their fasts tomorrow.

He's fighting. He does best when Danny holds him. He's his good luck charm and he holds him until his arms nearly fall off (please don't happen, I can't handle that too.)

Baby holders welcome during the day. Text me if you're coming but please force me to shut my eyes and not chat.

12:30pm update: Philo had a really rough night. The nurse was with him nearly 100% of the time. His little body is phighting hard. Locals/helpers please text Lacy to coordinate. Most childcare needs covered. I was there most of the night and then took a break to clear my head with Jim who is conveniently in town to ski while Danny sits with Phi. 2hrs of sleep ftw = excedrin and the shakes!

Original post middle of the night Sat Am:

My newborn is in the ICU with Bronchiolitis and RSV. We are on day 3 of his hospital stay, day 4/5 of his illness.  The babies flanking us in the ICU are on days 11 and 13 of their hospital stay, but our Doctor hopes we will be out next week. Maybe.

Our baby is very sick and has like six wires connecting him to as many monitors. But he isn't going to die.

This post is to communicate to my friends and loved ones what is happening so they can worry the right amount.

Philo is 7 weeks old, 53 days. I noticed him with cold symptoms on Monday night.  Right after this picture I saw that he was retracting a little to breathe. His ribs go in to work to intake air. I took him immediately to the ER and asked them to check for RSV.

Basically I'm a doctor now because I make excellent diagnosis. 

(Not only in diseases but also in diagnosing what I think your mental illness is).

We were admitted to inpatient on Wednesday night.

Generic update text:

Baby Philo caught RSV on the plane home from California. He was admitted to Primary Children's ICU where he got a feeding tube and CPAP because he was unable to breathe or eat without choking. So far, he's responding somewhat to treatment, but will likely be in the hospital for a while longer. Prayers appreciated. If you are feeling helpful I can email you our schedule/needs.

Much love!

Ok, here's the nitty gritty process so far.

This is the first level of care: oxygen cannula. He is deep suctioned nearly hourly and I have to leave the room because it's too sad and I can't handle the helpless screaming.

The way RSV works is because it's a virus they have no medicine to fight it so the doctors aim to support and help the body function as it fights the disease.

This is how the virus was explained to me:

So it's a bell curve of unknown length and you only know where you are by whether your baby worsens and needs more care to help breathe.  We have been needing more help every couple of hours all day.

These are the levels of care we have been through. 

In the gift shop there's a little display of "diamond" rings in case you have a diamond ring emergency. I thought that was weird and amusing. My kid's sick! I need a fake diamond ring, stat!

This is the high flow oxygen, level two care. It feels like they're water boarding my baby with air. It took him about 30 mins to get used to it.  I cried the whole time.  Once they put something on it stays on until they increase to the next thing, they don't just put him on air for a few minutes.

He needed hands on attention all night long the first night. He was too busy for the infant floor because of his high need but he has never been critical.

After a few hours of futzing around with levels of high flow we got transferred to the ICU.

At one point (during the transfer) Philo had thirteen medical people engaged in his care at once. Typically he has about five assigned to him (degrees of techs, residents, fellows, nurse practitioners, attending doctors). My favorite people are the nurses who are within 15 feet of him 24 hrs a day and the Respiratory Techs who are real pros in making care happen. The Attending Doctor is the person I trust most, the bottom line.

The Attending Doctor happens to be a friend in our ward! That was extremely comforting. He was direct with us when he was not alarmed at Philo's initial status (a healthy baby, no underlying problems) and on top of it when he did become alarmed. He's a major blessing, thank you, prayers.

This chart is how they evaluate Philo. 

The phrase "work to breathe" is key. Working to breathe is indicated by ribs sucking in, shoulders moving up and down, nasal flaring to suck in, and head bobbing back and forth with each breath.  The more those things happen the more care he needs. If your kid is doing that take them to the ER.  It's very exhausting, using about 30-40% of their energy hence the breathing apparatus.

As Hush says, "This is very off putting." It is really scary to see a baby hooked up to so much stuff and not moving. If I had all that crap I would be so uncomfortable and just seeing it makes you understand how sick he is.  It's generally verboten to say anything about death in hospitals, but it lurks in the background all the time.  My baby is not going to die from this, even if it gets slightly worse.  Babies with complications can die but my baby does not have any. I fear the next step of care, intubation, because it is more invasive and has more side effects. Pneumonia is always a possibility, hence the feeding tube.  I am not allowed to breastfeed for fear of aspirating: choking and fluid getting into his lungs. I have to pump 8x a day and they feed him my breast milk through his feeding tube down into his intestine.

Lacy helped hold for a few hours today so I could nap but I can't sleep. My friends are all being so amazingly helpful despite having just helped me during my child birth. I have so many Christlike people in my world, it's humbling. 

I'm a zombie, paired with worry and post natal hormones. I'm doing my best to be functional.

The other part of this is communicating with the people who love and support our family.  We are so blessed to have a ton of people who care and we need to update them so they worry at the appropriate levels (which are moderate: sad because baby is very sick, not worried he is going to die).  Thus far all of the updates have been "he's getting worse and I am falling apart but everything is being handled".

My father happened to be in town the weekend to ski so he is on duty with the three big kids. Betty Lou is being shuffled by my dear friends when Dad is at work. My father leaves Sunday and my MIL comes then hopefully to be a surrogate me and do my at home life so I can be at the hospital or asleep, trading off with Danny. She will be pushed to the limit minding the four kids so the church relief society is coordinating dinners and general house help. If you want to get in on that (and we thank you) or want to come to the hospital to snuggle a sick baby so we can rest I've made a Google doc reaching into next week I can email to you.  

What boosts spirits? Crunch bars and Coke at the hospital. Texting me about your life so I can be distracted. Sending me funny stuff to look at on my phone because my attention span is that of a toddler.  What gets us extra good care? Snacks to share with the medical people.

Where can I check for updates on how sweet baby Philo is doing? Right here on my blog.  

I can't even look at this sweet face without being flooded with emotion. 

I think that's all the information I would want if my sister or friend had a baby in the ICU. Please use our relief society as points of contact or text me if you're on your way here or something. 

Vaya con Dios.