October 28, 2007

Boo!



Check out my lovely pumpkin slippers (thanks A.Fradins!) and my pumpkin hat. Wonder why everyone calls me "pumpkin" all the time?
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October 25, 2007

Words have meaning

How is it that we are so lucky to have so many caring, thoughtful, and supportive people in our lives? The replies we've gotten from "The H Word" have been as varied as the leaves covering our back yard. And they've all been loving, thoughtful, and useful. Here are a few we're keeping close to heart as we move forward...

Words are only as powerful as we allow them to be. You know that Ben is bright and beautiful! You also know that he will soar with the right encouragement and lack of fear - ignore the label and let him fly. You know to remember the wisdom of one day at a time. I think if you try to figure out the next twenty years in your head you will go crazy with all the what if's. Get up, eat breakfast, play on the floor, take naps. It will take care of itself and Ben will be wonderful.

Handicapped? Surely that clinic doctor was talking about herself!!!! How stupid of her!! Yes, there are, might be, probably are some physical challenges facing Ben. Thank goodness you aren't stuck with just a clinic doctor! The only one handicapped in my opinion is the doctor! She's handicapped in her lack of compassion and knowledge!


From what I can tell, your baby looks like a wonderful young life that may have a few physical problems. But please don't do what so many of my parents do...and deny the reality of what burdens---physically or even cognitively--- he may have to carry. I vote for "embracing the child you have" and do everything you can for them, but don't deny that in some, or many ways, Ben may end up being different from the child next door. "Forget about it" may imply that you should not let his physical or mental state stop you from loving and doing all that you want with him. If that's the intent, then perhaps I'm mis-reading the whole post and poll thing. But I don't think so. Most parents with a special-needs child have a VERY hard time coming to grips with the reality of their baby's condition and all they want to do is "forget" that their child had a problem...and sometimes a very big problem. Perhaps I would have chosen "accept it" as my optimal answer.....because I see so many parents who can't, and they make their child suffer more for that reason. It really is painful for all of us who work with special-needs children when we see and hear a parent who cannot accept their child for who he or she is...and trying desperately for someone or something to "fix" their child.

Ben = Hero

Fortunately, Benjamin, I'm sure, has no idea what the H word means. Of course, you do. Embrace it? HELL, NO! Ignore it? Not necessarily; we don't know what the future holds. Just put the H word on the back burner, turn off the heat, and continue doing what you're doing to prevent this physician from being right. My guess is that, with time, the H word will become "hunk." Benjamin's scars will be covered with fur (Bloom men are furry), and, with luck, he'll walk tall.

October 23, 2007

Where does he sleep?


Ben's Grandpa Wuhwuh has been coming to our home on Wednesdays to help look after Ben during the time after becca goes to class and before Mike gets home from work. He has his self-proclaimed "own way" of holding babies.

Last week, while becca was working on her class presentation, he took Ben out in the front yard to wave at cars going by (a very popular activity around here) and came back in a little while later asking, "Uhhhh, becca dear, where does Ben sleep? I mean, does he sleep in his crib? Uhhh...if he falls asleep do you put him in his crib?"

Hee hee.

October 22, 2007

Heehaw


We took Ben out to Stade Dairy Farm for their Shades of Autumn Festival. Good times! Better yet, he got to go there with his cousins Aaron and Anna. When we were at our house Cousin Aaron saw the blog up on one of our computers. He asked his Uncle Mike what the "h-word" was. When Mike told him what it meant, Aaron scowled and said, "You show 'em, Ben!"

October 19, 2007

The H Word

Someone used the h-word on us yesterday. We went back to Lutheran General for a NICU developmental check-up. It was really nice. You can see alllll the folks at one, loooooonnnnng visit - hearing, speech, occupational therapist, developmental specialists galore.

Ben is meeting ALL of his developmental milestones! Yay!!!

He does have some issues, of course, but nothing that needs to be immediately addressed. Everything comes back to the left side of his body...short leg, weak leg, tight side, tight neck, flat head, etc...it's all on the left. I think they recognized we're kinda busy with all these surgeries and stuff for now that they're giving us a break. They want him on his tummy more which led us into a really long conversation about how this is supposed to work when Ben gets these stupid bladder contractions whenever he's on his belly. (The pictures we've posted lately are from his pre-bladder-contraction days, by the way.) Oh yeah...those bladder contractions have improved a ton. He rarely gets them now! Yay!!!

Well, after a day of really pretty good news and stuff we finally sat down with the clinic doctor and that's when it happened. The first sentence out of her mouth was, "What I tell all of my parents with handicapped children..."

And the rest could have been the secret to lifelong happiness, but I didn't hear a word of it.

Handicapped? Really?

I'm left wondering whether it's better to embrace it as reality, or fight it like an enemy. There's a silly poll available over there ---> where you can vote about it.

October 14, 2007

Aaron tastes good

Just ask Ben. He took a little taste of his cousin Aaron's nose this afternoon.


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October 13, 2007

Home!!!!

No pictures to share yet, sorry, but we're home home home home home!!!!

We had one last hurrah in Cincinnati last night when Ben decided he missed the hospital so much that he would just freak out for a couple of hours and get his mom to take him to the ER. Don't know what that was all about, but he was fine once we saw the surgery resident on call.

I don't think I quite realized just how glad I was to be leaving until I started packing the car. I was absolutely giddy. I was so excited that I completely forgot to get directions home. The highways are so confusing around there that I drove into and out of Kentucky two times - and over two different bridges - until I finally got headed in the right direction. When we pulled into the driveway at home we saw that someone (Mike and his dad, maybe?) had put up a "welcome home" balloon. So great!

We were gone 24 days. Yikes!!! Ben doesn't fit into any of the clothes we left behind in his dresser. He can also grab things really well now which is surprising the cats. Hee hee.

We promise, promise, promise some pictures tomorrow, okay? Just wait until you see Ben's "lucky outfit" we bought for his last visit with the surgeon...

October 12, 2007

Yayyyyy!!!!!

We're heading home tomorrow! Home, home, home!!!!!!

Our surgeon hopes we can buy some more time with the catheter he already has by keeping him off his stomach and keeping up with the medication. Once it heals more, it will be easy to put a new, less-irritating type of catheter in. He echoed the nurse's insistence that these contractions are very, very painful...mom still disagrees. We're scheduled to come back on November 1st for another evaluation and to possibly remove the catheter.

He removed some sutures from the first operation and showed us how to care for that at home. Doesn't look nearly as bad as I had imagined. We're scheduled for the colostomy closure on December 10th.

So that's it! We'll be packing today and hittin' the road Saturday morning. Can't wait to get home!!!!!!!!


PS - Party in the yard this Sunday around noon-ish. Everyone's invited! BYOP (bring your own potluck).

Another appointment

Today we head over to the hospital clinic for another appointment with Ben's surgeon. Let's hope they tell us to go home! Yesterday I spoke with the nurse and mentioned that I thought the medication was really helping because he's having way fewer spasms.

Her reply was, "He's still having spasms!?"

Uhhh....yeah, but way less! She didn't sound happy about that. She said they're really painful and even compared them to labor contractions. I told her I didn't think he was in much pain from them.

Her reply was, "Well, we'll talk about it tomorrow."

So we're all nervous for this appointment because once again it's down to either this catheter works or it's back to surgery to place a different type of catheter. Now everybody knock on some wood, cross your fingers (or eyes, Manders), say a little prayer, or whatever so we can go home!

October 09, 2007

5 Months Old!!!!

Wheee!!!!!!

Spasms schmasms

The medication for the bladder spasm seems to be helping a little. The frequency has changed to about once every 45-minutes to an hour (versus the every 15-minutes we had before). So, this is good and hopefully as the drug builds up in his system some more we'll see even more improvements.

Please, please, please, please, please work!!!

Of course, once again, as always, Benjamin is his adorable and amazing self. The girls over here are going ga-ga over his beautiful blue eyes.

October 08, 2007

This is just getting silly

Now it seems Ben is having bladder spasms. Apparently the catheter irritates the bladder and causes it to spasm. These spasms stop Ben in his tracks - he suddenly stop whatever he's doing, curls up into a ball, turns bright red, his eye pop open and water, and then it passes and he's back to normal. The doctor prescribed something to help his bladder relax (making a grand total of 5 different medications he's currently taking). Get this - the doctor said if this doesn't work then they will have to put in a different type of catheter. Excuse me? Surgery? Again?

This is just getting silly.

You wanna hear something even more silly? In the midst of Ben's bladder spasms (which, by the way, happen about every 15-minutes or so) I wrote a paper for my graduate class. I feel pretty bad for my classmates who will be "presenting" it during class on Wednesday night...who knows what the heck is in that paper!

October 07, 2007

Take me out!



Ben got out of the hospital last night and we have a diaper change routine that takes none less than FOURTEEN different supplies. Probably the best time Ben had during this hospital stint was to sing "Take Me Out to the Ball Game" with his Grandpa Wuhwuh (Fradin) on speakerphone.

October 06, 2007

Yeowsers

Ben's surgery went very well and he spent the night in the hospital last night and has been getting some good rest. He's chipper and happy this morning...as usual!

Boy was yesterday nerve-wracking.

It started out just like the last time they tried to take the catheter out. Something was obviously wrong and Ben was in obvious pain. And this time we had the added surprise element of finding blood in his urine. They say that's not uncommon with catheters, nor is it uncommon for it to be uncomfortable for a while when you take them out. So, again we waited it out for a few hours. And again it came down to either passing a new catheter or else surgery.

Dr. Pena, the man who has done over 2,000 of these operations told us he's never had this problem before and that he didn't know what was causing the problem. *#@&#$^!!!!

He said, "Even though I don't know what the problem is, I DO know what to do about it. This is very important."

And what you do about it is surgery. Emergency surgery. Surgery to place a suprapubic catheter which drains the urine from the bladder though a tube going through the abdomen.

Mike drove in from home (let's not even talk about how fast he must have driven) and arrived just in time for the consult with interventive radiology. Unfortunately he got to witness Ben in pain. It is an awful sight.

We were put on the surgery schedule as an "add-on" and that seemed to cause chaos wherever we went. We weren't on this list or that list or in the system or on the roster etc etc etc and it always got sorted out with, "Oh, you're an add-on."

When we finally handed him over to the anesthesiologist he had calmed down a bit (or passed out from screaming....po-tay-to po-tah-to). They carried him into the operating room and as we walked away we heard him start to scream again. Talk about rough. We had a good cry in the waiting area.

They paged us and as we approached the reception desk we could see our surgeons standing there - Dr. Pena, the resident, and the interventive radiologist. They all looked grim and it was probably the most terrifying thing we've ever seen. They motioned us to a conference room and as we were walking towards the room Dr. Pena, who seemed to suddenly remember something, turned around abruptly and said, "He's fine, by the way."

@&*#+$(#@*!!!!!!!!!!!!!!!!!!!!!!!!!!!

In the conference room the radiologist explained, in his Aussie accent, that his portion of the surgery went perfectly and simply and all that. Then he left. Dr. Pena then told us how during the procedure they injected a contrast material into his bladder and took x-rays to see what was going on in there. He began to draw on the board the urinary anatomy we've seen him draw probably 5 times before. It scared the crap out of us.

He went on to explain that when they injected the contrast material it filled the bladder and the bladder looked great. Then the material went down the urethra and this is where they saw the problem. There is a place in Ben's urethra where he has stitches from the surgery and the contrast material exited the urethra at that suture site.

So, basically for whatever reason it seems there is a hole in Ben's urethra. So, whenever he would try to urinate the urine would leak out of this area into his abdomen. Gee, wonder why he was in pain.

Dr. Pena said he has never had this happen in one of his patients before. @^&#$&#$!!!!!

The solution for now is to leave the catheter in place for at least a month and allow his urethra to heal on its own. Then we'll go from there.

When we got to finally see BJ again in the PACU he was very agitated and thrashing around. They gave him some morphine and he calmed down pretty quickly. We were so lucky to have the same PACU nurse as we had for the last surgery...it was such a comfort to see a familiar face on the other side. We were stuck in recovery for a loooong time because of shift changes going on up in the nursing unit. When we finally got up to his room and all checked in it was 9:00 p.m. (and becca had gone for 13-hours without food). It wasn't a pretty sight.

We headed over to the Ronald McDonald House to check Mike in and scrounge for some leftovers. Applebees had provided dinner that night and did we ever feast! Again, who knows where we'd be without the RMH.

Ben threw up some during the night so he has to remain on the IV for a while. He's been eating and happy this morning, so there's a good chance he'll get discharged today. We'll see. Let's not jinx it.

October 05, 2007

Back to surgery

Well the catheter didn't go well again. It was pretty much the same scene as last time with Ben in obvious pain. Except, this time there was bleeding and they couldn't get a catheter in again. So, Ben is in surgery now to have a suprapubic urinary catheter put in. The procedure is "simple" and should take about 30-minutes.

Thankfully Mike got here just in time to see him before surgery.

This is really rough. We could hear him crying as we left the operating room.

Catheter - Act 2

We're heading off to the hospital this morning to give it another shot. Hopefully the catheter removal goes okay this time! Knock on wood...fingers crossed...etc, etc, etc. I can't deny I'm nervous.

Our friends, Michael's family, are leaving today and heading back home. Yay!!!! I'm so happy for them and they are SOOOO ready to go home. But, I'm going to miss them terribly. It's been incredibly wonderful having another mother to "talk shop" with.

But, Mike is on his way!

October 03, 2007

Our new home-away-from-home

Amid Monday's catheter chaos, we got hit with the lucky stick.

Thinking we would be heading to my parents' home after the appointment, I packed up the car and checked us out of the hotel. Then catheter chaos cuckoo bananas began and I realized we would definitely NOT be driving the 3-hours to my parents' and would need to stay in Cincinnati for at least another night. I called the hotel and they were booked because of the football game. Crumb!

I hung up the phone and was just pacing around with Ben screaming. I didn't know what to do - scream, cry, whatever - so I just paced. Well, I paced ourselves into the path of a Ronald McDonald House volunteer who chatted with me for about 30-seconds before she offered, "Would you like a room?"

I was stunned. I'd heard that the Ronald McDonald House was always packed with a waiting list as long as your arm. She said it was just a fluke or something because that day they only had two families on the waiting list and she could put me in a room right then.

And then I lost it. I just burst into tears I was so relieved and touched. In a matter of minutes Ben and I were tucked into a very nice room and the house manager was knocking at the door to deliver a crib. He just patted my shoulder and said, "You're a good mom."

Do they TEACH these volunteers how to make people cry or something?!?

So, we're staying at the Ronald McDonald House Cincinnati for a while now. There is a dinner made by volunteers every night, fridges and shelves full of food, a sleep number bed, a crib, and all sorts of people constantly checking in on us. The hotel we were at was nice, but this place is a blessing.

If you happen to stop by a McDonald's, toss some change in the charities bucket. They also collect pop can tabs. The house I'm staying in raised $20,000.00 in tabs alone last year. There is just so much good stuff going on here that it's impossible to put it all down here. As much as they've helped out me and Ben, they're helping out other families a hundred times more.

October 02, 2007

Bummer

Remember how "as long as everything goes well" we would be done with the hospital for a while? Well, everything didn't go well with the catheter and we're still here in Cincinnati. I used to wonder if I would know if Ben was pain because he never seems too upset by all these medical procedures and such. Now I know better.

Yesterday was such a long, hard day I'm not even sure where to begin. How about from the beginning...

We had an 8:00am appointment to get Ben's urinary catheter removed. Somehow, even at 8:00am they were running behind and we didn't get into the examining room until about 8:45am when a nurse took out the catheter. He was fine. In fact, he seemed pretty happy about having that thing gone. Our instructions were simple: Wait for him to urinate and then call the nurse to let her know and then we could leave.

We ran into our friends, Michael's family, in the waiting area and they were there to do the same thing so we all decided to head over the Ronald McDonald House to wait for our kids to pee. They were happy boys for about an hour and were having a good time grabbing each other's feet and stuff, rolling around on the floor. Then things took a nose-dive.

Ben was smiling and laughing one minute and suddenly became very rigid, turned bright red and screamed his head off. It was one of those screams that left no doubt it was because of pain. And it just kept going. He screamed for nearly a half-hour to the point that he was sweaty. He kept bringing his knees up to his chest and getting all tense. He finally got so tired that he fell asleep whimpering. It was horrible.

I called the nurse, of course, and she said it was probably just burning a little when he urinated because of the sutures in there and the catheter causing some irritation. She said to call her again in about an hour. So I did and this time he was screaming when I called. She said again that it was probably just burning and to call again at 3:00pm. So, I spent the rest of the afternoon trying to console Ben. I have never seen him like this. Not ever. Not for all the IVs, not for the vaccinations at the pediatrician, not for all of the tests and not even for the two surgeries. I don't know if I've ever felt worse.

I finally had enough of it and called at 2:45pm ready to drag Dr. Pena out of surgery by his gray hair if I had to. I didn't have to. They asked us to come in and we were in a room with the surgeon in about 15-minutes and he looked concerned. When he stretched Ben's legs out, you could actually see his bladder protrude from his tummy. Dr. Pena said, "I have never seen anything like this."

He pushed around on his abdomen and Ben screamed even more to the point where he had beads of sweat on his face.

Then Dr. Pena explained that he was going to try to insert a new, smaller catheter in order to relieve Ben's bladder. It took me a while to process what he said next, "I'm going to try this catheter but I'm not going to force it because I don't want to disturb the sutures in there. If the catheter won't pass easily, then we are going to have to sedate him and access his bladder through his abdomen." I nodded. As I was holding Ben's arms down and watching the surgeon prep him with iodine it donned on me that sedation + access through abdomen = surgery. Surgery! Again! #*&#^%$*@!!!!!

Luckily the catheter passed through okay and his bladder was able to empty. Ben was calm almost immediately. I know now what it feels like to have relief wash over your body. I think Dr. Pena felt nearly as relieved as I did. He wrote something on a business card and handed it to me and said, "Call me any time. Don't call here. Don't call the nurses. Call me. This is my mobile number."

I asked what I should call for, what should I look for, what signs of a problem. His reply was, "I'm not going to answer that. You're his mother and you know when something is wrong. Call me."

Thankfully, Ben has been back to his cheery, marvelous self since then. At various times over the past few weeks Ben has had both his parents, both his grandmas, a grandpa, and three aunties here to support him. Would you know everything would go all cuckoo-bananas once it was just down to him and his mama?!

October 01, 2007

Mondays are for something new



Ben's dad flew back home yesterday so he could start a brand new job today! Go, Mike, go!

Ben has an early morning appointment at the hospital today to get his urinary catheter removed. Woo hoo! As long as everything goes well with this appointment, he'll get to take a break from the hospital for over a week! He'll still need to stick close to the hospital because, as his surgeon put it, "If you have a problem and you go see your pediatrician, she will take one look at that incision and tell you to go see your surgeon."

Happy Monday!