Friday, June 25, 2010

Bye Bye Baby

Okay, so technically she's 3 1/2 years old, but today I got misty-eyed when I had to say goodbye to my "baby" girl at the airport. She was headed to Utah on an airplane ride with Papa, her first trip without Mom and Dad, and she'll be gone over a week! Oh, how my baby is growing up. Both of us have been in a state of half-excited/half-sad about this little adventure. This morning illustrated that perfectly. Upon waking up, she usually calls down the stairs, "Mommy! I'm awaaaake. Come and geeeet me!" but with the excitement of her trip on her mind, this morning I simply heard a joyful, "I'M READY!" {I fully expected her to open her door and see her fully dressed, packed bag in hand!} But about 30 seconds after I got up there she said, "But Mommy, I'll MISS you!" Awww...I know, sweet girl. I'll miss you too! I'm sure the rest of her week will be like this too...about 80% having an absolute blast and 20% missing Mom and Dad at the same time.

{Her bags are packed with the essentials...Tina Ballerina & Curious George, books,
snacks, sippy cup, 2 presents for the plane ride,
and Keith's iPod Touch that he loaded up with about 15 Disney movies!}

In good news, James looks like he's on the mend, at least a little. He's been fever-free all day today and if he makes it through the night it'll be 24 hours without a fever. So it seems the antibiotics are kicking in. If he keeps this up, we'll stay through the weekend and then get to head home on Monday. He's certainly feeling better {as you'll see in the pics}, but today what he mostly wanted to do was be *out* of the room, seeing the sights and charming the people...he would actually cry when I tried to go back in our room! :-) I don't blame him. This time we're back in the same room we had post-surgery, so we've now logged close to 3 weeks in that room. {You know you're getting to be a regular when all the nurses know the names of everyone in your immediate family, plus your list of medicines, routines, etc!}

{The hospital has a supply of toys that they let parents borrow, which is so nice...makes James feel a little more at home, with the addition of his favorite Exersaucer!}

{Our usual hospital stash: toys, books, and carb-laden snacks.}

On another note, I think I blogged awhile ago about my sciatica/back pain. I've been in constant pain for the last 7-8 weeks, from my lower back all the way down to my foot. I started physical therapy and last week I got an MRI of my spine and lower back. {This was my first MRI and can I just say that I really had to talk myself through it to keep calm! You lay down flat and are slid waaaaaay back into a plastic tube with about 8 inches of space all around you, so you feel like you're in a coffin--I had to *force* myself to keep my eyes shut!--for 30 minutes while the machine takes images, which sound like a hybrid of a bad 80's electric keyboard band and a jackhammer in your ear. If you ever need to get one, I say splurge for the OPEN MRI!} The results weren't great...I have a bulging disc in my lumbar spine region and a nerve root that is either being pinched or pushed out of place, thus causing my pain. So next week I get to see a specialist and have an injection in my back/spine and then I have to see a neurosurgeon to talk about treatment options. Apparently physical therapy helps with pain management, but does not cure a bulging disc in the location where mine is at. Please pray that I don't have to go through surgery for this!! :-(

Thursday, June 24, 2010

Deja Vu

I've been meaning to update my blog for awhile now...but apparently I'm only motivated to do it when it involves deja vu. Remember my last post about heading to the hospital {just 2 weeks ago} because James had a fever and we had to stay there for a week? Yep, it's happened again! Last night our home nurse came out to do a dressing change on James' central line, happened to take his temperature and shocked us when she said it was 101.8-102! I just thought he felt a bit warm since our house was hot and he'd been sleeping in my arms. Guess not. The poor kid was burning up. :-(

We got to the ER around 8:30pm, had to do a blood draw/catheter urine sample/chest x-ray/start antibiotics, etc. and finally got checked into a room by midnight. James was wide awake and miserable and finally fell asleep around 2:00am. {Mommy was exhausted!} Today he's been really fussy and his fever actually got worse and was 103 this morning and he threw up once. His docs were hoping it was just a virus, like last time, but around noon we got word that his blood culture from last night had shown bacterial growth, so it's official: he has his first central line infection. Not the news we were hoping for. So far they're going to target the infection with specific antibiotics and see how that goes. If that works, we still have to wait for him to be fever-less for 24-48 hours before we can go home, so it looks like another long haul. Maddie leaves for Utah on Friday afternoon and oh, I had such projects in mind for my "free time" when James would be taking naps this week & my evenings after he went to bed. Dang. {It's no wonder I haven't updated my scrapbook or even printed out any photos since Easter!}

Last week we took advantage of the weather {we did have like ONE sunny day, right?!} and went to the park as a family. James loved getting to be outside and you know what an outdoor lover Maddie is!

{Oh Mom, this is so embarassing!}

Another day when it was "standard June weather in Oregon" {long sleeves, tights, boots and a hat}, Maddie tried out her new 99 cent Minnie Mouse bubble wand, which happened to work better than any of the other ones we've bought over the years--go figure!

Yesterday {before we realized James was sick, since he was a fairly happy camper all day} we got our Johnny Jump-Up toy out of storage and James gave it a try...oh, the sweet freedom of "walking" and bouncing and spinning himself in circles! Just like his favorite Exersaucer, only better! He was lovin' it, especially with his camera-hog sister dancing up a storm to entertain him. Out of all of us, James will probably miss Maddie the most this week. He's her #1 fan.

The many faces of James...

{What the heck kind of face is that?! to see it bigger :-) }

Wednesday, June 9, 2010

Our 2nd Home

Oh, how I wish that title meant "we just bought a vacation home" I'd love a little cottage on Lake Cour de'Alene one day...but instead it means "we spend so much time at Emanuel Hospital, it might as well be our second home!" Yep, you guessed it--we're baaaaaack!

James had been running a fever of 99-101 and was just plain miserable {pretty much crying all day Monday, except when he was asleep}, so his doctors told us to admit him to the hospital last night...and now they'll probably be keeping him thru Friday, perhaps over the weekend too. Keith is taking the night shift {and all week off work, again!} and I'm taking the days. So far his labs haven't shown any infection, but they started him on antibiotics and he is still running a fever. We have to wait 72 hours for the cultures to be done growing and he has to be fever-free for 24-48 hours before they'll let us go home. It could be a central line infection {the one in his chest that delivers his nutrition}, which would be bad--they'd have to remove his chest IV and put a regular IV line into his arm or leg and another IV port somewhere else for access to blood-draws, then wait to replace the chest one for 6-8 weeks {that would be such a huge pain for James!}. I really hope that doesn't happen. It could also be as simple as a virus {I had a cold last week, so I'll feel really guilty if it's that!}, which hits him harder because of his sensitive system and shows up differently than it would manifest itself in you or me. Even if they don't figure out what the infection is from, we're still required to be there for up to 72 hours. The hard part about this is that if it were a normal baby, it could be something a cold, ear infection, urinary tract infection, even teething. You'd give him Tylenol and let it run its course for a few days. But since they always suspect a central line infection, which can get serious quickly, we always have to take these kinds of precautions with James.

All this time at the hospital takes its toll on everyone. Keith and I take shifts, but whoever goes at night never gets much sleep and whoever goes during the day gets really tired of holding a {often cranky} baby and sitting in an uncomfortable chair all day. It's also hard to leave James alone, so you feel guilty even leaving for 20 minutes to go down to the cafe to grab some food. Needless to say, everyone's schedule is off {including Maddie}, my house is a mess and I'm pulling out meals from the freezer if I'm lucky...or else it's cereal for dinner. :-) Tonight I got home at 8pm, spent a little time on the computer, did some laundry, sorted through/paid lots of medical bills, started filling out paperwork for Maddie's preschool application, and then realized "oh, it's now 12:30 and I never even ate dinner!" Now off to bed so that I can bounce up in the morning and head back to the hospital. I know this will likely be our life {in and out of the hospital} for perhaps the next year, and it's a necessary evil, but I've gotta say--for a girl who's never really liked doctors but does love being at home and having a routine, I'm NOT a fan! :-)

Wednesday, June 2, 2010

On a happier note

In the midst of all the drama {see post below on ER visit}, we've managed to have some fun around here during the last week of having Grandma Darlene with us. Today my friend Cheryl brought her cute kiddos Lucy and Henry over for a playdate, which was fun for all! Lucy is about a year younger than Maddie and Henry and James had the same original due date, so Henry is now 7.5 months and James just turned 9 months old...but you'd never guess it by looking at them! Henry is a BRUISER!! He has 2 or 3 teeth, is in the 90th+ percentile size wise, sits up, and can crawl like a maniac. Oh, and he's about a whole head taller than James. You'd swear he was a 1-year-old! :-)

{This is James' "Hey, lay off of my toys, buddy!" look.}

{OK, so James' legs are a little bit bent here, but not much...
and check out how much bigger Henry is!}

Lucy came in the door and made a mad-dash for Maddie's play kitchen and toys. I guess she'd already been planning out all the treats she was going to make once she got here! They played kitchen and Little People and "Jesus toys" {Playmobil figurines} and blocks and had foam sword fights. The only thing better would be NO RAIN so that we could go to the park! I think the next time they come over, we'll plan a "project" for the girls to do.

{This pathetic picture is the best we could do for a group shot today. HA!}

Today Maddie and I went to Fred Meyer to pick up a few things and found Crayola finger paints & the glossy paper that goes with it {I swear, I've been looking for MONTHS for that paper and no stores have had it!}. Maddie was totally into the finger painting and actually did a nice picture...until she discovered "blending" the paints with her whole hand, which basically turned the whole page into a sheet of mud.

We have LOVED having Grandma here for the past 3 weeks. She's incredibly helpful and is always willing to help with laundry, tub time, cooking, playing with Maddie and holding James all the time. We are so lucky to have her help! I'm going to be in withdrawls when she leaves, so I'm trying to get lots of things done this week!

Back in the ER :-(

So we came home from the hospital last Friday night and we made it about 72 hours before we had to go back again, this time rushing to the ER. I was setting the last things on the table for dinner when James, who was sitting with Darlene, let out a huge scream and started crying in pain. I thought perhaps he'd had a BM {those are still painful for him, since his system is so fresh} or gas, but when I went over to comfort him I had a shock...his stomach tube had been *ripped* completely out of his body! Oh my goodness. Get him to the changing table, search around for gauze and tape since he was leaking out of the hole, get him some Tylenol and drops of sugar water {works as a soothing agent on babies}, and wipe the tube with alcohol & seal it in a plastic bag. Keith, who is for some reason ultra-calm in the kitchen, says "Oh, I think you can just pop that one right back in." Um, NO! The end of the tube has some kind of anchor-looking-doo-hickey on the end of it and there's no way I'm shoving it blind into a surgical opening that's only 2 weeks old! I call the doctor, he confirms not to touch it--just go straight to the ER and tell them it's a time-sensitive injury. I run around, gathering the car seat and diaper bag and anything else we might need, then hop in the car with Darlene {who was kind enough to offer to come with me!}

Once in the ER {which was probably a 30 minute wait and we were only the 2nd family in the waiting room...what do you have to do to speed up the "emergency" part of Emergency Room? Lots of blood??}, we had to wait another 40 minutes for the pediatric surgeon to arrive {one of the guys James had in the NICU}. He got supplies ready and then said, "I have to be honest with you. If I can't get a new tube in, we'll be headed for surgery tonight and there's a risk he could lose function of the stomach tube." NOT what a mother wants to hear! Luckily, he did manage to get it in, but within few minutes of him placing the tube {and James screaming bloody murder the whole time}, James started throwing up. Pretty much for 30 minutes straight. They needed to get an x-ray to make sure the tube was placed right, but he couldn't even lay down for a 1-minute picture without vomiting, especially when they were injecting dye into his stomach. So we had to take him down to do a live X-ray {like a live-action video/movie}and we discovered the problem right away. The doctor had been over-zealous placing the tube in James' stomach and had actually pushed the tube all the way into his esophagus and inflated the mini-balloon on the end of the tube up near his diaphram!! Holy cow, that could have been a disaster. No wonder he was throwing up and choking on his own spit. Once they put it in the correct place, James calmed down right away and pretty much fell asleep within 5 minutes. Now that it was 10:30pm and we were all exhausted, it was time to head home.

The next day we had a post-op visit with James' surgeon, who had heard about the drama the night before. Although he wasn't pleased with what had happened, since the hole/track into his stomach had already been compromised, he decided to replace the tube with the final device called a Mickey button. Normally they wait for the hole to heal around the original tube for 6-8 weeks {just like it would in your ear after you get them pierced} so that the track was stable, but they decided to do it early and just let the hole heal around the button. My poor little guy *screamed* for probably a good 20 minutes after they put that in {I'm sure that skin is so raw now!} and I felt so bad that he'd had two days of such pain. On a better note, It's sooo much easier to manage than the 1-foot tube he had before. It's just a little round disk about the size of a penny that has a 1-1.5 inch tube that's inserted into the stomach with a balloon inflated on the inside to hold it tight to the skin. When we need to feed him, we take out the plug and hook up a short tube that hooks onto his feeding bag.

Speaking of feeding, we are "testing the system" from now thru Friday and if he doesn't have any gagging/vomiting episodes, then we're going to try to start feeding him formula through the stomach tube again--yay! He hasn't had anything in his stomach for over a week now. He's now consistently peeing and pooing, so we know that things are now moving all the way through, which is a reassuring sign. Please keep praying for him as we start the feeding process and his stomach/intestines have to adapt to the presence of food again. His large intestines have never digested anything, so it will likely be touch-and-go.

I must say, with all the treatments and pain our precious boy has to go through, he is my HERO. He endures it all with such a calm and happy attitude, which is just amazing to me. He's teaching me a lot about how much all of us can endure in life and still come out happy on the other side! :-)