Thursday, June 25, 2009

A New Pediatrician

We went through a few pediatricians with Paige until we found one we liked. When Eli was born, we looked into getting him in-line, as well. Come to find out, Dr. Fraley is retiring. Bummer!

So the search was on again. There was another doctor at the same office who came with good recommendation from the cardiology team at CHCC. He was the kind of doctor who enjoyed a challenging child (perfect), and even had specialty training in cardiac conditions! It seemed like a perfect match. We met him Monday, but we just didn't click. We realized it was very possible he was caught a little off-guard by Eli and his mountains of paperwork and medical history. It sounded like he was expecting a standard "well visit, meet the patient" kind of visit. We decided we'd give him another chance. However, we started to hear repeated recommendations for another doctor, Don Fields of Yosemite Pediatrics. He was so well praised, we decided to give him a chance. This has turned out to be a great decision!

First impressions of Dr. Fields office were of a very welcoming, new building. Fresh, modern colors, rich woods and a very open, airy environment. Of course, ergonomics don't decide a doctor, but it was refreshing. The staff was genuine, nice, and helpful. As soon as they saw Eli, they brought us back into the "Baby Room," telling us they were expecting sick kids any minute, and that it would be a good idea to isolate Eli.

We transferred into a normal room. and Dr. Fields came in almost immediately, laptop in hand for his paperless office. He sat with us for quite some time, asking lots of questions about Eli's medical history, and creating many new questions we'd never before heard. He made observations no one else has made, as well. The most notable of these was in regards to Eli's temperature. For some time now, Eli's had low-grade fevers. He's been poked and prodded so many times to figure out what's wrong, but nothing ever comes back positive. Dr. Fields made some detailed explanations (I'll spare you) about how he thought it could be a problem with the temperature regulating portion of his brain! He told us "Anytime anyone sees abnormal temperatures, they immediately jump to the conclusion of a fever or infection. Why hasn't anyone does a CT scan of his brain, to see if he has any other physiological defects?" So he'll be scheduling that for us himself.

We mentioned who his doctors were at CHCC, so he said he'd head over there this evening and sit down with all of them and catch up! We asked if all of Eli's transport needs qualify us for a handicap placard, so he's sending all the paperwork into the DMV for us. We asked about a PG&E break for his medical needs, so he's sending in all the paperwork for us. He gives all his patients his personal cell and pager numbers. He has on-site X-ray.

Are we impressed? An emphatic "Yes!" to say the least. It seems too good to be true, so the cynic and skeptic in me are waiting for the other shoe to drop. Until then, we're more comfortable and excited than we've ever been about a pediatrician!

His Web site could use some attention, but here he is:
http://www.yosemitepediatrics.com

Tuesday, June 23, 2009

Returning Update: Not returning

Whew, that was close! The surgeon who originally did Eli's fundoplication and G-tube went out of his way this afternoon, and visited us in the emergency room. He scanned through Eli's records, checked him out, and genuinely "took time out" for us.

Eli's problems appear to be irritation on the inside of his G-tube, where the "mushroom" balloon that keeps the tube place is rubbing the inner wall of his stomach. This isn't completely unexpected, but not very common, either. After X-rays, blood work, and dye traces, they've sent him back home. We'll be increasing the medicine that controls stomach acid, and adding a numbing agent to the area before each feed until that area settles down.

Dr. Allshouse is an amazing man
. We're lucky to have someone of his caliber available to us.

Thank you all for all your immediate support.

Matthew 18:20- For where two or three come together in my name, there am I with them.


Returning

Just a quick note, and request for support.

We've brought Eli back to CHCC because he's having problems feeding. Our own assessment is that stuff is going in, but not coming back out. It hurts him so bad to eat, we hasn't eaten since his 3am feeding. We hope it's not C-diff complications. Nothing's been verified yet, but we expect he will be re-admitted today.

The last 24 hours have been extremely difficult for Tanya and I. Neither of us has slept, Eli hasn't stopped screaming. He still mixes in some great big smiles, but they get cut short with abdominal pains. This is the toughest time we've had yet, with Eli and our own care. We're both running on adrenaline, alone. And we miss Paige, dearly.

Please pray for Eli's health.
Please pray for our sanity.
Please pray for Paige's stability.

Sunday, June 21, 2009

Homecoming

In one of the most momentous chapter changes of his life, Eli has made it home!

Only 2 weeks after we were told he wouldn't be headed home before his second surgery, this very event actually happened. Ironically, Paige's visit to the ER was while we were dealing with Eli's discharge, only a couple hallways down the way! We didn't expect him home before October, following recovery of his second surgery. Only 6 days ago, he was in the PICU. He's made it into the step-down unit on several occasions, only to get sick every time, and escalated back into the PICU. W
e've begged the doctors not to send him into the step-down unit, which is a floor filled with sick kids, but lacks the isolation and control of the PICU, but this just wasn't possible. Discharge directly out of the PICU just isn't something they do.

So we changed our tactics, and took an extremely aggressive, active role in his care. Praise to Tanya for being there many, many hours this last week to care for Eli, so the nurses didn't have/get to. Praise to her for managing anyone who walked through his door, and their santitation practices. Praise to her for convincing the doctors we could do everything they're doing, at home! So they sent us home with all his meds (down to 9 of them, 6 by the end of the month), some oxygen bottles, and a monitor.

He's been home since Friday evening, and everything's gone really well. Doctors orders are
extremely limited/controlled visitation. He's still very fragile, and any sickness will send him back to the hospital. This morning, we took a big risk, trusting God would bless our intentions and keep him healthy. Today, there were baby dedications at church. Our church represents a couple hundred people who have been supporting us so dearly, and blessing us. We trusted God would honor our desire to bless them with a chance to finally meet the boy they've been praying for, and have seen only through photos shared here. The fact that today is also Father's Day only made it that much more poignant for me.

As we begin this new chapter, we need to clearly reiterate that we're going to have to limit visitation to a very small, select few. We hope this doesn't create animosity or offend anyone, but we need to limit him to as little exposure to potential hazards as possible.

Please pray that he continues to stay healthy, grows stronger, and continues to be used by God to bring glory to his name.



Friday, June 19, 2009

Let's All Go to the Hospital!

We've often commented on how difficult it is to manage two children, when they can't be in the same place at the same time. Today, we found this inconvenience to be a fair trade off to having them both in the hospital. We'll take "healthy" any day. Paige got to visit the emergency room this morning!

She was sitting on her booster chair, at the kitchen table. She decided to push off of the table with her feet, and the chair fell backward. She bumps and cries, but it looks like she'll be alright. She's a bona-fide toddler with scraped and bruised knees to prove it. Then she starts vomiting, and she NEVER does this. In fact, this is the first time in her entire life. I immediately had concerns for head trauma. Her pupils dilated appropriately and she was still talking. She was just a little quiet and clingy. She ended up vomiting three times before the ER visit was over.

The docs assessed her, and weren't extremely worried. She walked without any problems, and all the other symptoms were absent, as well. They gave her a medicine to help control vomiting and a popsicle. By halfway through the popsicle, she was talking so much we had to quiet her down. She told all the nurses about how we were going to see Eli, and all about his condition.

That was this morning. We just put her to bed, and she's acting completely normal. The last time she sat at the dinner table, she made a comment about how she's not going to kick the table any more.

Wednesday, June 17, 2009

4 month update

Eli will be 4 months old tomorrow! He was doing well, so they sent him back down from the PICU to the step-down unit. Once again, he immediately got sick while down there. He'll get through this, but it's just annoying that every time he heads down into the step-down unit, he gets sick, and sent back into the PICU. Every single time. 4 for 4.

Eli now has a C-diff infection. He was running a low grade fever, but that's already broken. His is mild, so please don't think the worst if you follow that link. The short version is that C-diff is a bacteria we all carry, but we have other bacteria in our bodies that help keep it in check. In cases like Eli's, he's been filled with so many antibiotics that his bacterial balances are a little off, and the c-diff was able to multiply beyond normal levels. What's this mean for him? He had a couple runny diapers, and possibly some stomach pain, but he's still on a light dose of sedative, so he's acting completely normal. But it sent him back up into the PICU.

He's also back on a nasal cannula for a very light dose of oxygen. His oxygen dose of 1/4 liter per hour shows how little this really is. It's just a little boost to his regular breathing, but he needs it.

Lately, his compliments have started to shift from how cute he is (we still get that daily), to what a great demeanor he has. One doctor told us that, typically, cardiac babies don't like to be held a lot, and are a little standoff-ish. Eli, on the other hand, is always immediately aware and captivated by anyone who walks in the room. He'll wake up, turn his head toward you, and watch everything you do. And he loves to be held. He falls asleep on us all the time now. Smiles are also commonplace. In fact... today, I was able to make him smile so big and so much, we even heard tiny sounds of laughter out of him!

His second surgery isn't nearly as pressing as previously thought, either. This surgery, the Glenn, is typically scheduled by the patient's health, as they begin to outgrow the first surgery. Eli's cardiopulmonary functions are still doing well, so the surgeon isn't chomping at the bit as hard as he used to. For now, we're in sort of a cruise control, waiting for Eli to grow stronger and healthier.

Please pray that:

  • Eli's lungs mature and function more efficiently.
  • He is protected from all the sicknesses that float around hospitals.
  • He can tolerate larger feeds, so he can put on even more weight.

Sunday, June 7, 2009

This is how it's supposed to be

Yesterday, we finally got permission to unplug Eli from his monitors when we're holding him. For the first time ever, we're able to hold him freely. No more organizing and bundling up wires, and making sure we stay within arm's length of his bed. Now, we can roam freely with Eli in our arms. He's turning into a little boy! The last week has been miraculous for Eli. Only a week ago, he was still intubated, but this week he's really "turned a corner." It's so exciting to see him finally making forward progress.

We've already decided that he's going to take after his sister. Just like Paige, he likes to run behind schedule, but when he decides it's time to make something happen, it's a
done deal in short order. We remember wondering if Paige would ever walk. Then one day, at 15 months, she just walked across the room, as if she knew how the whole time but was waiting for the right moment. Or her potty training... same thing. One day, that's it. Get rid of the diapers. Eli is showing to be the same. He finally got tired of laying in that bed, so he decided to heal and strengthen, all at once!

Here's our awesome little boy from yesterday.

Add Image

Friday, June 5, 2009

Eli's smile

We walked into Eli's room last night to find a WONDERFUL surprise! His naked face. This is the first time we were ever able to see his face without any tubing. No breathing tubes. No cannula. No feeding tubes. It was a beautiful sight! See for yourself:
video

Wednesday, June 3, 2009

Pleasing Progress

Eli has had some encouraging progress this week. He was successfully extubated Sunday. He still remains on an oxygen cannula. But even the cannula flow has been weaned down in recent days.
Eli has also been placed on bolus feeds through his G-tube. Instead of being continuously fed a small amount, Eli is now getting a single large amount every 3 hours. Before his sugery, this led to acid reflux and severe drops in his oxygen saturation levels. The staff is monitoring him closely as they are feeding him. So far, he is tolerating his feeds well! This is great progress!
He is supposed to go into the Cath Lab sometime this week. This will give us the answers to what we will do during the next phase of Eli's surgery/healing.