WAHOO!

Gabe did it! Brian is on his way and we are outta here!

Come on bowels!

No more NG tube. No more epidural. No more IVs. The drain will go today. Gabe is sitting and walking on his own. He's eating. His pain is well managed and much better. All we need now is POOP! He'll get some Miralax and another suppository this morning. So hopefully we'll be out of here tonight or tomorrow. Fingers are crossed. I don't think I've ever looked forward to one of my men pooping so much, ever.

What a day

Day #7. We're still going strong and Gabe is feeling better than ever. He was out of bed 3 times today. He took a few steps the second and walked to and from the toilet the third. Brian visited tonight and helped him walk to the bathroom and get back in bed. I think Brian realized how much work it takes to help Gabe move. Three of us had to help that time. Brian helped Gabe walk; the nurse dealt with the IVs; and I carried the cath bags. What an event! Besides the bladder spasms, he's in a lot less pain. He also had his epidural removed today. And, for the big surprize, Santa came to town! Santa, Mrs. Clause and a troop of elves visited the hospital and came to Gabe's room. They gave him a Sorry board game and took a picture. Gabe is actually smiling in the picture! Tomorrow, he has a chance to meet Chicago's mayor. I don't think Gabe is too interested, but whatever. He's sleeping comfortable now.

Sweet!

Gabe has been chattering away to the nurse about Plants Vs. Zombies for about 20 minutes now. So funny! I'm getting ready to put it on Uncle Tim's computer so he can play. Thanks Uncle Tim! Also, he was having some cramping and not feeling well. BUT! The lady from child life brought him a Chicago Bears build-a-bear, a Nike backpack and a Bears football signed by Charles Tillman. I guess he was here last week and signed a bunch of footballs. He donated them all to the hospital. THEN, we played bingo. Gabe won twice! He picked out a little orange pen and a metal John Deere tractor. He told me, "Mom, I feel better now." Well, off to kill some zombies!

How exciting!

Today, so far, is a good day! Gabe is napping and is calmer than he has been. The pain seems to be better. His doctor wants him sitting in the chair atleast twice today. He had some coco krispies. And at 1:00, we get to play bingo. Hopefully he wins because if he does Child Life will bring a prize cart up for him to pick a prize. We also were just told some students from the French pastry school are going to visit in a few minutes. If he wants to, they will let Gabe decorate cookies. If not, we get to eat some anyway.

End of the day

Today went pretty fast. Thank goodness. We were busy. It was a hard day for Gabe. He's exhausted, sad, scared and ready to go home. But it was a good day whether or not he wants to believe it. First, we got him out of bed and sitting in a chair. He stayed in the chair for about 1/2 hour. Not too shabby considering he hasn't been out of bed since 7:30 Thursday morning. Tomorrow he'll get in the chair twice. And the second good thing is ... FOOD! Real food! Food that needs to be chewed! He had Froot Loops! It all was awesome. Hopefully we're done for the night and have a good day tomorrow. I know one more good thing that could happen then. Just wait and see!

...And into the night

That catheter still leaks. The nurses had to change Gabe's clothes and bandages in the middle of the night. All the jostling around really makes him hurt. His hip started hurting too. Probably from having to lay down for so long. I think we finally got to sleep around 4:30 or so. The good news is that Gabe is HUNGRY. As soon as the doc makes his rounds, we're going to ask when he can eat something that requires chewing. He's getting plenty to drink. He asked for a popcicle at 3 am. Anyway, he's seems to be doing a little better so far today. He's even using the call button for the nurse. And he let me go for coffee while he was still awake, as long as I brought him a bottle of water.

Tough day

Pain really hit Gabe hard today. He started having bladder spasms, common in people who've had bladder augmentation from what I hear. And trust me, they are NOT fun. It was a long day for both of us. Fortunately, Gabe is able to take a medication that helps relax the bladder and lets him get some rest. However, he fought it. Gabe has never been one to take liquid medicines. We tried to get him to take it a couple times. He'd either refuse, spit it out or vomit. His nerves are shot. He's angry and tired. Now that his throat isn't so sore, we're going to try a pill. He's saving some fruit punch for the occasion.

Speaking of fruit punch, he's allowed to have broths, jello, popcicles and juices. Hurray! He was chugging some apple juice earlier and I had to stop him. He looked at me and said, "But it's so good!"

The pain management team has also changed the medicine in his epidural. It seems to be working pretty well. Well, except when the nurse discovered his superpubic catheter was leaking from around his belly. She had to flush it and change the bandages. Gabe, as you can imagine, didn't tolerate that very well. It was difficult enough to watch.

He's resting a little more comfortably now. He's even been pointing out funny things on TV and he talked to Brian for a minute.

So the day seems it might end a little better than it started. Here's hoping it lasts.

Hugs please

Gabe had a long night last night. He was in quite a bit of pain. The culprit? Bladder spasms. His nurse gave him some medicine to help relax those muscles and to help him get some rest. He's exhausted and wants to go home. Who can blame him? When I feel aweful, I'd rather be home, too. We'll see how this medicine works for him and hopefully he'll have an easier day today. The docs from pain management and Gabe's urologist are on the case. Maybe if he's more relaxed, I'll be able to give him a "bath." He's resting now so we just need to keep the nurses out of here for a little while. Good luck. In the meantime, it's snowing like crazy here. I have to blinds open on Gabe's huge window so we can watch it. It's kind of relaxing and definately beautiful.

Addy anyone?

Gabe and I are all settled in to his new digs, which includes a recliner, fold-out couch, huge window minus the helicopter view and less rooftops, minifridge and a 42" flat panel TV, that's right. Pretty sweet.

So, we're in the new room. Gabe also gets his NG tube out in the morning. He wasn't quite ready for it to go tonight. The doc said that he should be able to eat "semi-solid" food tomorrow, whatever that means.

In the meantime, I have an address for Gabe. If you want it, just let me know. I'm not going to post it online.

Moving day

The doc says Gabe should be moved out of the ICU today. Hopefully he gets a private room. I imagine he will. We had some other good things happen today and it's only 10:30 in the morning! One of Gabe's IVs - the arterial line - has been removed and his NG tube (the one in his nose) has been clamped. As long as his stomach can handle some water, it will be removed today. He had a couple sips so far. It's a start. Gabe will feel so much better with that thing gone. The nurses changed his bedding and his clothes a little while ago and I washed him up a bit. He's mad and sad but handling everything very well. He's such a tough kid. Brian will be here after work to visit. He's bringing me some groceries too. Lasagna. He's bringing me lasagna! All is well.

He speaks!

Gabe has been awake quite a bit today. It's good to see his eyes so much. But, I was missing his voice. His mouth and throat are so dry and sore. He didn't want the ice chips so he used a cool damp wash cloth. He'd wipe his eyes and mouth, occassionally wiping the inside of his mouth. At one point I looked at him and he had the cloth hanging out of his mouth. Whatever makes ya feel better buddy! He eventually started talking very quietly. What was the first thing he said you ask? Netflix. He should get paid for that. You can't get a better endorsement. Good night!

Good morning Gabe

Gabe slept a lot yesterday as you can imagine. So, at around 4:15 this morning I woke up to the nurse picking out a movie for him to watch. He's been awake most of the morning. He's still not talking but once he's able to get some ice or something he should feel better. His mouth and throat are very dry. He's sore but OK. He's comfortable and tired. He has his cozy blanket with him and a little puppy I found at the gift store. His surgeon was here a little while ago. He said the tube in his nose should come out today and Gabe should be out of the ICU maybe this evening.

As for me, I slept well last night. I was able to wash my hair this morning and grab some coffee and a bite to eat.

So far so good. But it's pretty tough seeing him like this.

Stay tuned...

Gabe, the final update for tonight

Here's what's going on with my Gabe-O.

We got to the hospital at 6 am. Surgery began at 7:45 am. We saw him in post-op at around 6 pm. A long 12 hours let me tell ya.

It didn't go quite as we planned but he's OK and resting comfortably. Gabe's nerves and anxiety got the better of him this morning. He had a pretty difficult time finding the strength to go to the OR. So, his surgeon let me go with him. I put on my scrubs, complete with cap and booties, and walked Gabe into the OR. I got to stay until he fell asleep. It was hard to see but not to do. I kissed him, told him I love him and left to met Brian. I lost it. At that point, Gabe had the easy part. He was asleep and numb. Brian and I on the other hand waited and waited and waited. The surgery, which was supposed to take 5 hours lasted for 9.

There was also much more involved. Since doctors can't see every twist and turn until they open ya up, his doctor's time estimate was a little off.

So you're wondering what happened? He had the bladder neck reconstruction with mitrofanoff. His appendix is now attached as a tube to his bladder and his belly button to form the channel for intermittent cathaterization. His bladder sphinter muscle was tightened. His bladder neck was moved farther away from the bladder opening and lengthened by using tissue from his bladder. (his bladder is a little smaller now but is very health and will grow). His ureters were mislocated. So they were moved to a better location. Oh, and how could I forget, since his bladder neck is behind his pubic bone, that bone was cut down the middle and separated in order for the doc to get to the bladder neck. Gabe is now the proud owner of metal wires holding his pubic bone together. (I guess we'll find out how airport visits will go now.) Don't get me wrong here, the surgery went well and Gabe didn't have any problems at all. However, he currently has a NG tube (through his nose and into his belly), an epidural, 3 IVs and 6, ya 6, catheters. All 6 will be coming home with him for about a month.

Its been a long, awful day for us. But even though Gabe is a mess with wires and tubes, he is OK. As for Brian, he was wonderful today. He stayed strong while I fell apart. In return, I was strong when he fell apart. He's home with the grandmas, Jonah and Emelia. And me? Well, much much better. The surgery is done. Now I help him heal. I'm good at that part. I'm not nervous, anxious, worried or scared anymore. All that went away as soon as I saw him in post-op. All the tubes and wires didn't even shake me.

Update on Gabe

It's 1:50pm. Gabe is still in surgery. But, he should be out in about an hour or so. Then we'll be able to talk to the doc and see him. It's been a tough morning for Brian and I .. tougher still for Gabe. He was not in good shape in pre-op, so his doctor let me go into the operating room with him until he fell asleep. It wasn't pleasant but I'm glad I got to do it. In the mean time, we're still waiting. From what we've heard so far, the surgery is going well but with some unexpected additions. More later.

Thank you

This holiday season, I'm most thankful for my growing epispadias family.

As Gabe's surgery approaches, we're scared and worried and nervous. All I want is to walk into post-op and see that he's OK. After that, it's just a matter of getting him healed up. Until then I find myself leaning on "strangers" who get it without an explanation. People I've only met online offer a shoulder, their wisdom and prayers. Strangers have found me and offered advice and their personal experience without wanting anything in return. People I've only seen once genuinely care. Some have been through it all. Some have guided their children, or still are, through it. Some are just beginning the journey and hope to learn from my experiences and Gabe's.

It's amazing to feel needed and supported through such a long, confusing, frustrating and painful journey. Gabe and I truly feel blessed to have been found by our new family. Thank you all for being here for us. I'll be sure to return the favor.