Home Again, Home Again

After 3 failed IV attempts. Don't worry, we had 12 more.

We're home! Ohmygoodness, that was crazy. Let's just say, Charlotte will never be a Red Cross Blood Donor.

We were admitted around 9:00 PM PST last night. 10 hours, A NICU nurse, 3 PICU nurses, a PICU attending, 2 attending anesthesiologists, and some sedation later, Charlotte finally had an IV placed. It took an hour after sedation to get a line in. When they finally were successful, two doctors placed IV's at the same time, so they left both of them in. By the time they wheeled Charlotte from the sedation room down the hall to her room in the PICU, one had already blown. This girl does not like IV's.

Once we got the line in, we waited for another 4 or 5 hours before IR could fit us into their schedule. At this hospital, IR uses sedation when placing J-tubes. At CHOP, they just told the kids to suck it up. (I'm sure they did it as nicely as possible). Having gone through both experiences, I'm not certain that the trauma from placing an IV was worth the lack of trauma during the J-tube placement. At least that only lasts about 15 minutes. The IV ordeal was drawn out over several hours, and Miss Charlotte was convinced we were trying to kill her every time I put her on the bed.

However, it's all over now. Except for when it has to be replaced in three months. I think I might schedule a vacation conveniently at that time. {Peter doesn't read the blog, he'll never know :)}

Thanks for all the texts and messages of support. We know you are all probably burned out on this journey and our neediness.

Don't worry, so are we :)

Back Again, Back Again

Charlotte pulled out her J-tube. (Actually, I pulled it out. But that's not important, right?) Here in California, that means an admission, not a simple visit to Interventional Radiology.

This is not awesome. But I'm pretending it is :) Woohoo....

Catch Up Time

Charlotte's Flight Crew

Saying "See you later!" to Grandpa Knickerbocker

Charlotte's transportation

She was *slightly* less stressed about the move than I was.

Arranging for Charlotte to get to California was nothing short of an Olympic Event. The social worker at the NICU at NMCSD worked tirelessly for months to arrange everything. We're so grateful that we had someone to help us with the details. Without her, I'd still be in PA.

An ambulance came to pick us up from our house around 7:45 AM EST. We threw all the remaining items in the ambulance, strapped Charlotte down and headed to Philadelphia International Airport. From there, we boarded a jet, staffed with two pilots, a NICU nurse and an ER physician. We stopped once in Kansas for about 20 minutes to refuel. We finally landed in San Diego, at the Marine Corps Air Station. From there, we got on another ambulance and drove to the Naval Medical Center San Diego (NMCSD, the hospital at which Peter works).

Charlotte did really well on the flight. She was pretty entertained the entire time, falling asleep for the last leg of the trip. The staff on the plane was amazing and they went well out of their way to make sure we were both comfortable. The plane was loud, and the temperature varied wildly, but they catered a meal for me and made sure I had plenty to eat and drink.

We then spent a little over two weeks in the PICU, arranging Charlotte's home care needs and supplies. Caleb was a good sport, but he was definitely ready to say goodbye to the hospital room by the time she was discharged. Then he came home and realized we don't have the Disney Channel like the hospital does. Oh well.

We're getting adjusted to life here in San Diego. It mostly consists of cleaning up after the children, buying stock in sunscreen and "lounging" at the pool. I'm trying to convince Charlotte that getting in the water will not, in fact, kill her, but she is rather convinced of this and I think she just might be more stubborn than I am.

Which is a problem. But considering the problems we've faced over the past year and a half, I think we'll keep it.

We're Home!

Phew. The past two weeks have really kicked my trash. CA, on the other hand, has handled things just fine.

So fine, in fact, that she is now 100% oxygen free. Who knew that all she needed was a nice sea breeze and high taxes?

Charlotte's echo looked great, and the cardiologist is confident that her heart will remain fine without the oxygen. We've also gotten the go-ahead to only monitor her sat's while sleeping. This means that during her "down" time from her tube feeding, she is completely tube and wire free. For three whole hours a day. It's rather strange. I carried her around the house for the first time today. She's 16 months old. I carried my baby. It's rather surreal.

In other news, Charlotte is attempting to crawl as well. So far, I've seen her take about 3.5 crawls toward an item. That wore her out, though, and she has refused to perform since then. We'll get her going though.

We meet with the San Diego Regional Center and a Special Education Teacher today to map out a therapy plan for the little one. We have a follow up appointment with her primary care doctor on Friday, and hopefully then we can know who we still need to see and who we can say "chao" to without looking back.

Of course, all good news has it's counterpoint and Charlotte's stay was full of that. It appears that her central apnea is pretty significant. To make things difficult, we can't quiet figure out why she has central apnea. She's too "old" for apnea of prematurity to still be a problem, and her MRI revealed that she does not have a malformation of the brain stem, which often causes central apnea. Which leaves CA as a bit of a mystery. Neurology also noted that she has hypotonic CP, although, at this point at least, the diagnosis is more to qualify her for services than it is an actual forecast of her abilities. And finally, her eye doctor told us today that while her eye sight looks great, her field of vision is reduced by about 50%. It's the question I have avoided asking, but there it is. She has about 80 degrees of vision, and beyond that, her peripheral vision is non-existent. But hey! That's 80 degrees she in all sense should not have. We'll take it!

Currently, my two little munchkins are laying on the floor, watching some Go, Diego, Go! It's been amazing to watch them interact like two "normal" siblings. You know, like Caleb shouting, "Momma, she's bothering me!"

Sigh. I love it.

We're in California!

So.

In the past week, we've moved across the country, spent 7 nights in the PICU (just as a "let's get to know Charlotte" admission, nothing medically wrong with her), spent 3 nights off of oxygen, met 7 new specialists, changed her CPAP to a VPAP (basically, a vent, without intubation), and discussed two different surgeries.

We've also attended numerous "here, you need to be friends with the other members of your residency class" activities, tried to entertain the big brother (thank.you.San.Diego.zoo), and dropped my father off at the airport and received a reality check (What? You mean we won't be living with Grandparents? But who will watch Caleb?).

Not to mention the 764 phone calls (give or take a few) to insurance companies, medical good suppliers, and nursing agencies. 

This upcoming week, we are looking at a sedated EEG, another echo (they want to look at her heart off of oxygen, to make sure it really looks good, without the effects of oxygen), a roundtable discussion on Charlotte's plan of care, and hopeful a discharge home.

What have you been up to?

What a Difference a Year Makes

June 14, 2010

 Our little miracle has come a long way in a year, hasn't she?

June 10, 2011

Under the Weather

Charlotte's a bit sick today, and so I think we all need a "pick-me-up" post. 'Cause I'm oh-so-good at writing those, right?

Peter graduated from medical school this week!  Woohoo! Here's to a few more years of never seeing him :) All jokes aside, we're so proud of his accomplishment. Peter has worked so hard. He's done so much to get here. At a young age, Peter was diagnosed with Dyslexia. In some stroke of luck, Pete's teachers were amazing. They worked in a way that we would all hope teachers would work when our children have special needs. He was held back for half of 2nd grade, attending 1st grade for half the day, and 2nd grade for the rest of the day. During those early years, he would sit up at the teacher's desk while she read him his test and he would verbally take the test. He couldn't read.

In fifth grade, he was able to start reading picture books. He was in special ed classes until middle and high school when he started to mainstream back into "regular" classes. His senior year, when he was in all mainstream classes, he had an instructor who would meet with him once a week or so and go over all his classwork. This instructor would meet with his teachers throughout the week and find out what Pete needed to work on, what tests were coming up, what projects were due.

His school is does not have a large tax base. It's mostly rural, Amish countryside. They don't have large donors, or wealthy incomes to rely on. But they did the best with what they had. They never let him label himself, or allow him to slack off because he was in special ed. They (and his parents!) required him to fulfill his potential. Nothing more. Nothing less. They told him to keep going. To work hard. To find a way that he could learn, and then go with it.

As I watch Charlotte struggle to achieve milestones, or regress in areas that were once strengths, I think of her father. If this man, who hardly had a "normal" course, can walk across that stage, fulfilling his life long dream, then Charlotte can accomplish hers. No matter what holds her back, no matter what "others" may say, Charlotte will succeed.

She may not become a doctor. She may not run a marathon. But she will accomplish anything she wants to. It's not about what I want her to do. It's not about what others say she is capable of doing. If she can accomplish what she sets out to do, then she has succeeded.

And so have we.

Congratulations, Peter. We're so proud of you and all that you have accomplished as well.