Back Home

I apologize for not posting anything earlier, we want to let everyone know that Ender was discharged to home on Christmas Eve. We received extensive training on how to flush the PICC line with saline, then pump antibiotics, flush again, then push heparin, twice a day. He is back to normal personality wise though he has some minor side effects due to antibiotics. He has been smiling so much! 

We have a home health nurse that comes twice a week to check him out and change his dressing. He will have many followup appointments in the coming weeks and months, but at this point we are so happy to have him home!

Rooney still good!

Christmas Pic!

A Long Day

Today was a Marathon.

Ender's Infection Disease docs are kinda stumped by how Ender got Meningitis again, so they decided to get an MRI of his spine as well as his brain. They decided to stack a PICC line procedure (Eventually we will be able to give him antibiotics from home) and another lumbar puncture at the same time as the MRI. He was put under general anesthesia this morning at around 9 am. We were unable to be present due to the anesthesia. Everything went smoothly and he woke from his long nap at 2 pm. When he got back to the floor from the recovery room, his favorite eye doctor came in and checked his eyes, most likely his least favorite part of the day.

Later in the afternoon, we received the results of his MRIs:

-Blood clot open and almost resolved.
-No significant swelling in the brain besides some Ventriculitis
-Most importantly, no brain damage.

A large weight lifted from our shoulders.

This evening, Ender is getting another MRI to look at a small pocket of liquid on his spine that could be either an absess (grouping of infected cells, would need a longer course of antibiotics) or a pocket of fluid from repeated spinal taps. Neither is a danger to his spine.

Ender remains a very sick little boy, but we have much to be grateful for. We are happy to be spending the Holidays with family, even if its split between home and the hospital. Happy Festivus;)

Waking up from his procedure

Still groggy

Enders favorite hospital bed

Mom reading to Endy

Sleeping with Papa

THERE'S A SMILE!

Yes, we still have little Rooney!

She is happy for her brothers test results!

Rooney is grateful for Grandma's

Round 2

Hello,

Yesterday evening, Ender started getting fussy and refused to eat. This being abnormal, Libby and I decided to take him into the ED at Children's. (Urgent Care was closed) By the time we were seen at 11 pm, Ender was very uncomfortable and fussy with a fever of 101.5 F. The doctor couldn't find a reason for the fever, so he decided to start a round of antibiotics due to Ender's past history. He also decided to do a spinal tap to check for Meningitis. When the results came back, to our horror, Ender has Meningitis again. Libby (mostly) and I held Ender throughout the night.

Today around noon, the Infectious Disease doctor informed us that they think, though almost medically impossible, that the Ecoli bacteria may have never fully been eradicated. They said that Ender would need at least another 42 day round of antibiotics, more frequent spinal taps this round, and some more MRIs. Round 2 at Children's has begun.

From what I can tell, we caught it really early. Ender told us immediately how he felt, and luckily (most likely because of his past) he got started on the right antibiotics quickly. He is currently at about 21 hours of treatment, and is less fussy and visibly looking better. He is however very tired and uncomfortable when moved. He has started eating and voiding once again.

Obviously, we are incredibly frustrated/angry/#$%, though Ender continues to take every poke, prod, procedure, like a champ. We love him and appreciate the support from everyone who has already shown it.

Here is a couple pictures of Ender after waking up and feeling a little better. We almost got a little smirk from him.

This is where he is right now, snoozing away.

Back and Forth

Hello Everyone!

Greetings from Morningside.

After 5 days settling in at home, Ender and Rooney had an outpatient eye appointment at Children's. The eye doctor found that one hour (1/12) of Ender's eye was stage 3, meaning that his retina was close to becoming detached. Much to our Frustration, Ender was readmitted to children's NICU awaiting laser eye surgery to fuse his retina. Since the surgery would require sedation, Ender would stay for 2 nights. Libby spent that time at the hospital, and Rooney and I had a couple father daughter days. Ender was discharged Friday after a successful surgery and has fully recovered!

Rooney is doing well pooping, growing, and being cute. No updates on the Roo front. Here is a picture of Rooney and her dad folding clothes:

Making Faces

I'm sure every parent has already had this experience, but let me give you the rundown anyway. Here are the statistics so far:

162 diapers changed (Only got poop on my hands 6 times so far!)
6.1 hours sleep average per night (this covers a 12 hour period)

Other than lots of cuddling, followup appointments, diapers, and laundry, we don't have much else going on. We are looking forward to the babies getting older/building immunities so we can have visitors/visit everyone! (Get your flu shot!)

Pics Pics Pics:

Endy Girl

Sleepytime

With Grandma

Mid Puking

Falling

Quizzical

Goodnight Everyone!

#PendingDischarge

Quick Update. The 24 hour count down has begun. Ender and Rooney both passed their car seat tests today and will be coming come tomorrow!!! We have been looking forward to this day for a long long time.

To give an update on what I wrote about last week:

Ender

1. Brain - Finishing up final EEG now. This is to make sure he can get off anti seizure medication. I will continue this update next time.

2. Lungs - He had some trouble getting off of that little tiny bit of oxygen. The only time he really needs it was when in a deep sleep or eating, but it is recommended he keeps it on. Our house is now equipped as a home healthcare facility! We are hoping he doesn't need to stay on for more than a few more weeks.

3. Tum Tum - After passing his swallow study, showing that he wasn't breathing in any breastmilk, Ender surpassed every expectation we had for feeding.  A week ago he got moved up from 45 - 55 ml per feed. Now he has free reign on boob, and then bottle if he isnt in the mood for boob. Last bottle feed today he took 80 ml! (Bottle feeds are fortified breastmilk). Also: No more feeding tubes! (They were taken out after pics!)

4. Teenage Sleep Schedule - Solved that with opening the curtains in our room and keeping him up during the day. Now he sleeps like a baby at night;)

5. Water Weight - Tonight Ender weighed 7 lbs 1 ounce. He is a little chubby but the water weight has subsided.

Rooney is good. Poops like a competitive Chicken Wing Eater. During the carseat test she blew out her diaper staining her BRAND NEW CARSEAT. Rooney, this is why we can't have nice things.

What did I do??

SleepyPoo

SillyPoo

GrumpyPoo

AngryPoo! Bedtime! Goodnight Everybody!

Shots Shots Shots Shots Shot-Shots Shots...Everybody

Hello Again!

I would like to start out by apologizing for not posting sooner and for the long post. I will incorporate pictures in between text to make it more interesting. A lot has happened in the last 2 weeks, but if you looked in our Children's hospital room, you wouldn't think so.

Vaccines - Since we heard that vaccines are harmful, we decided to let our children decide whether or not to get their Shots. Surprisingly, against all credible medical advice, Ender and Rooney decided to get their shots. They immediately regretted their decision. Their cries temporarily drowned out the volunteer harpist who was playing in the lounge outside their door. They were tough though and handled all 3 shots each! We cuddled them and promised them as much screen time and sugar they want when they are older;)

Ender 

1. Brain - He had an MRI last Monday. It showed that the blood clot in his brain had not grown. There is still puss in his ventricles, though they are dead infected cells and will eventually drain. Libby and I watched him obsessively for the next 5 days, asking nurses, NPs, and Attendings paranoid and sometimes ridiculous questions about any little change we saw in him. We found out today that if there was any infection in his brain left, Ender would be obviously sick within 24-48 hours. We were very relieved to hear this news, and can now focus on the next tasks at hand.

Yes, that is "Blue Steel", soon to be male model.

2. Lungs - Ender has had his Nasal Canula (set on the lowest possible setting) removed 2 times over the last 2 weeks. He did very well for about 24 hours each time, but eventually started having desaturations/apneas and needed assistance once again. The Attending gave him a week long break and we will try again starting this Wednesday.

3. Tum-Tum (3 Ninjas reference intended) - Ender is still working on his bottle feeds. He was not very good at coordinating suck/swallow/breath and the Attending thought he would do well with a week long break. Today he started up again and did okay but not great. If he doesn't improve soon, he may need a swallow study and need thickened formula for the next 2 months to ensure he is not swallowing breastmilk into his lungs. We obviously do not want this as he would be on formula for the next 2 months instead of Momilk:) 

He obviously couldn't care less

4. Teenage Sleep Schedule - For the last 3 days, Ender slept almost all day. It was something that was worrying us, like maybe his meningitis was coming back. Everyday we would get a report from the night nurse that he was up and awake at night. We decided to spend a night at the hospital to see if this was true. Holy Crap! Ender was up and crying and wanting to be held for half the night, good practice for when they come home!

5. Water Weight - Ender has also been put on a diarrhetic to help him lose some of his excess water weight. It has been working!

Before (Turtle Boy) and After

Rooney

Over the last 4 days, Rooney decided she wanted to start eating from the bottle. She has increased the average feed from about 5 ml to 25 ml. It is nice to feed her ourselves and watch her progression. She needs to get up to 45 ml per feed for a sustained period in order to come home. She still has a lot of work to do, but we are so proud of her so far!

"How can I reech these keeds?"

On Sunday we walked into the room during a Steelers game. The nurses found out we moved to Pitt and decided we needed to raise our kids the Yinzer Way.

Rooney however, quickly responded saying she was Vikings 4 Life

Enders getting big

Mom!

(Bonus: Puzzle #2 "Who's Butt" was removed from the post due to Libby finding it too crude I'll send you the pic if you email me)

Are you guys still here? Post is over!