Navigating our way through the journey of Short Gut Syndrome.

Wednesday, December 8, 2010

I suck at blogging....

....but I'm really great at Facebook? Oh well, we're in the hospital (AGAIN, but I digress for now) and I finally figured out how to hack into the wifi, so I will be productive and make an actual post!

LOTS has changed since June... Caleb turned two in October and is just as wild as can be. He is SO very smart (which I give credit to ALL of our hospitalizations this past year--- we have nothing better to do than LEARN!) He knows all of his letters (upper & lowercase), #1-20, shapes, colors, body parts, clothing, and animal names/sounds. As a teacher, I'm pretty impressed with his cognitive abilities! What he lacks in the digestive tract, he makes up for with his brain! :-)

We've had some really rough patches lately.... Caleb got his new CVL in September and it's wonderful. It's actually a PICC line, but they're use it this way because it's unbreakable (or so they say!) He's walking all over the place and uses his backpack brilliantly. In October we had a HUGE scare with his CO2 levels dropping drastically, which ended up in about 3 weeks of hospitalization, including 5 ICU stays. It was awful... he was completely unresponsive and it was basically like he was in a coma. It took boluses of straight biocarb to "wake him up" and straighten out his levels. Finally, labs were sent out of state and he was diagnosed with d-lactic acidosis. His formula was changed to Pulmocare and he is doing AMAZING with it.... in fact, he tolerates it better than the Elecare he was on, so there's our silver lining. In an attempt to diagnose why his CO2 was dropping so rapidly, his TPN was almost doubled, so I feel like we've taken several steps back. We were hoping to see his actual nutritionist this week, but then he landed back in the hospital for a line infection. So, hopefully we're on the mend and we're not here for Christmas!

Despite all of that, he's doing really well. He's still at a rate of 82mL/hour for 17 hours on the G-tube, but we're hoping to get permission to start increasing that (we generally go up 1mL every 3 days, but we haven't for a LONG time due to surgeries, antibiotics, etc.) His TPN is now at 822mL/10 hrs, so I'm hoping to get that back down to where it was sooner than later. But in the meantime, we're just glad to be happy & healthy!

Here are a few new pictures of the little man:

He's a Mickey Mouse Clubhouse JUNKIE.

PedsCare Zoo Night

Strolling Along....

Our Little Family (with one more on the way!)

Tuesday, June 22, 2010

Four months without a post....

....not because things are bad, but because they're insanely BUSY! Where do I even begin?

Caleb is doing awesome.... he's 20 months now, is crawling ALL over the place, pulling up on everything, crusing the couches and anything he can hold onto, will walk with assistance and basically is a holy terror (which is a good thing!) He's now only taking 10 hours of TPN (584mL) and is running at a rate of 63mL/hour for 17 hours of Elecare through his G-tube (which is double after reading my last update!) He's babbling and starting to use some sign language also. HE IS ALLLLL BOY!!!

He ended up hospitalized again for 9 days in April for another line infection.... after 4 months infection free, it was very disappointing. He's also been getting frequent double ear infections, which we can't decide is because his gut doesn't absorb the antibiotics correctly to properly clear it up or if he's just really prone to it.... who knows if we'll ever know, but we're going to an ENT in August and will most likely end up with tubes. Thankfully I've learned his symptoms now and we don't rush to the hospital because of his slight fever (assuming all the other things are in check!)

It's finally the summer (the best part of teaching) and we're going full-force with therapies and appointments. He's also going to be starting the Little Bites Feeding Program (FINALLY!) in addition to his speech therapy & OT that works on feeding. NOTHING is working.... he is finally starting to tolerate some ice water from a sippy cup, but it's inconsistant and still such a small amount. He's still a joyful little boy & such a free spirit, but it's definitely getting harder the busier he gets to get him hooked up, etc. The backpack is working brilliantly, but it's causing some issues with his back. It's such a Catch 22 with our kids!

Well, I guess that's all for now... I'll try to post more and actually figure out how to network with some people on here! Until next time....

*I wanted to post new pics of him, but the website is being cranky!

Monday, February 15, 2010

Time Flies....

Caleb is 16 months today. WOW.... though I have not been present for his entire life, I'd like to think that it's quality over quantity. Though I did not give birth to this beautiful little boy (and he's probably so gorgeous for that reason alone!) I'd like to think that I've had to endure the same feelings and emotions that any mother has when she learns that something is different with her baby. Since such a falsified picture was painted of Caleb prior to his placement with me, I feel like I've had to go through the same stages of acceptance as any biological mother does. Of course, it doesn't make me love him any less (if anything, I love him more!) but all the plans I had have had to be altered and the direction our life was headed has just taken a much different direction. I wouldn't necessarily say that it's worse, just different.... unexpected.

Caleb is truly a joy to care for. He has the best little personality and is so funny and easily amused. Some of our best moments together are when I'm preparing and hooking up his TPN... it doesn't even feel like work majority of the time because he just fills the entire experience with such happiness. Okay, not all the time, but most of the time. There will always be nights that I just DON'T feel like mixing all of it up and purging that darn bag and so help me if the machine starts beeping, but those days are becoming few and far between.

I have no idea if I've been experiencing the grieving process from learning the truth about Caleb's future and what's in store for us, but that's what it feels like. When I lost my first son, I bought every book at Barnes & Noble about losing a child and how to cope with such indescribable pain. I felt like no one understood what I was going through and quite frankly, I had no idea what I was going through. All I know is that it hurt.... badly. One thing I learned about the grieving process is that although there are stages, no one goes through them in the same exact order. Right now, I feel really confident in my ability to care for Caleb and to ensure that I'm doing everything possible to make sure he has every opportunity to achieve. I'm focusing on the positives: 37 days out of the hospital, he's waving "bye bye" now, he's starting to tolerate a TAD bit of vanilla Elecare by mouth and is showing an interest in applesauce, he's so close to crawling that it's scary, he's being brave and exploring his surroundings more, his feeds are running strong and steady, his throwing up has decreased a little, despite the fact that I gave him an AWFUL haircut, it will grow back, and the best--- every time I pick him up, he gives me a hug. I know there will be ups & downs, but I can only hope that the ups start outweighing the downs.

"While we try to teach our children about life, our children teach us what life is all about." -Unknown

He is my little Romeo!

Wearing a hat, to cover up the awful haircut I gave him!

Sunday, February 7, 2010

Lazy Sundays

Well, there really aren't lazy Sundays with Caleb, but currently I'm being lazy while he terrorizes the play area, so that has to count for something!

Things are going pretty well for now. He was put on Senna to help his motility issues and it's working fairly well. He still does a lot of vomiting, but it's nothing compared to what it was now that he's having fairly regular BMs. He's also tolerating 30 calorie Elecare at 34 mL/hour.... woot! His nutritionist said there wasn't anything else she could do for Caleb until he started pooping more and puking less, but I'm going to call her tomorrow and see if she at least wants to bump his speed up a little. His labs came back on Friday and showed that his CO2 levels are low, which could mean that he's dehydrated (I don't think he is) -- so we had to re-test them STAT. Hopefully it was just a glitch in the test and they don't want to bump up his TPN.

His biopsy for Hirschprungs Disease is on February 15th. We have to arrive at the hospital an hour early so that he can be given IV antibiotics prior to the test since they'll be entering his colon. I'm not sure how long it will be until we get the results back, but hopefully we won't have to wait too long. I also need to call to find out about his MRSA results. One day they randomly tested all of the kids who were in the hospital by swabbing around their g-tubes and Caleb came up positive (most of the kids in there did) -- he has to have three negative cultures before he can come off contact precautions when he's admitted. I'm being very proactive about it because when he is in the hospital, it's awful being confined to the room. So, his pediatrician is doing the swabbing for us. We did our first one a couple of weeks ago, but I haven't heard the results. Chances are I was probably supposed to call and didn't. I also need to return the call from Boston about taking Caleb up there over the summer. Oy vey, I need an entire business day to make all of these calls!

Caleb is REALLY getting brave with his mobility! He's finally starting to put himself on his tummy and stay there, push up on his arms, attempts to pull his legs up and then scoots forward. He's also starting to pull up and he's spinning around when he's sitting. I feel like things are about to get ridiculously difficult to manage! I just found a harness at Target that has a small backpack on it. There's no way he'll keep his Entralite Infinity backpack on at this age (plus, it's too big for him), but this one looks perfect and straps across his chest. We really need to start practicing now so once he's really on the move, he's already accustomed to wearing it. We'll see how this turns out!

That's really all that's going on now.... back to wild baby duty!

Wednesday, January 27, 2010

New theory?

Caleb doesn't qualify for the STEP procedure.... he doesn't have enough length. Now his team wants a biopsy done to test for Hirschprungs Disease. *sigh* After hours of online research, it makes sense. My biggest worry is that if he does have it, the treatments that seem effective for it won't work with him because of his lack of gut. We go to the GI team tomorrow and I'll definitely be showing up with my handy dandy notebook full of questions! Thankfully, they're a patient bunch.... although I know they dread when I walk in! Here's to you, little man.... I'm doing everything I can to make sure you have the VERY BEST quality of life!

Monday, January 25, 2010

Tsunami's of Vomit.

I'm trying very hard not to lose hope that one day the input will be greater than the output.

Pay no attention to the "hospital property" printed on that pad! :-)

Sunday, January 17, 2010

I'm determined to figure this out....

....which is two fold.

First, I have no idea how to use this website to network with other families. I've always considered myself somewhat computer savvy and now I feel blinded by the other beautiful pages and my lack of ability. Oh well, one day I'll be able to dedicate myself to making ours look better and finding other families! Until then, I'll just blog to myself.

Second, I'm determined to figure out a new method to our madness. Caleb has always been a vomitter instead of an excessive BM-er, which from what I'm told by his team, is the opposite of what he should be doing. When I say he vomits, I really mean that he ERUPTS like a volcano. We've literally been in Target and he's sprayed an entire aisle, cart full of items, myself, his sister, EVERYTHING. I didn't even know where to start when it came to cleaning it up....

For the most part, he's only having these eruptions at night. I've changed everything imaginable to try to help this problem, but nothing has worked. During his last hospitalization, we saw a new GI doctor who was on call and she was FABULOUS. She explained that right now his bowels are so dialated, that it's almost creating a bowl like shape. We pump his formula in, but since his bowels are not contracting normally, he cannot push it out, so he fills up and eventually has several eruptions. She explained that his body is on the schedule of being "full" at night, that it really has nothing to do with the time of day or the fact that he's sleeping. He's currently taking Milk of Magnesia to help increase his BMs, but I think he's building up a tolerance to it or he's getting more and more dialated and it's really not affecting him in the same way. When his BMs increase, his vomitting decreases... it's got to come out somehow! Last night, I windowed his feeds (he's currently doing 18 hours now on his Elecare, at 30 calories, running 32 mL/hour) and gave him 3 hours off during the night (from 11pm-2am). He woke up this morning in a CLEAN BED, which has never happened before! I was so excited! But then, he erupted several times today, which he hadn't been doing. Oy vey.... I don't think it's a fair trade for him to puke during the day instead of night. At least at night he's confined to a crib so the clean-up isn't as severe. Plus, I finally broke down and I'm using a night time nurse since he's been hospitalized so much lately and keeps coming home with a slew of IV antibiotics and we're trying to many new feeding regimens through the night. I became completely drained (and ill) from having to get up hourly with him and constantly worrying that he was going to aspirate on his vomit. Although the adjustment of having someone else in the house has been difficult, it's worth it to get at least a little sleep at night.

We're also waiting to find out if he's a candidate for the STEP procedure. He's definitely dialated enough, we're just waiting to determine if he has enough length to make it worth it. Any thoughts on the STEP procedure? Of course it sounds amazing when the surgeons describe it and when I look at it online, but I also know by now that the grass isn't always greener on the other side.

Until next time....