Reality Check

The kids and I braved a short but exciting storm this morning to go play with friends. We got there right around lunch time and two of our little buddies were already done eating so I figured we better get started. What I saw- my kids having lunch. What our host saw- 20 minutes spent trying to get yogurt actually into Kiera's mouth rather than her on her bib and an hour on top of that spent reminding Ben of how he needs to eat after the fundo. Bite of cracker-sip of milk-bite of cracker-sip of milk. Anyone who has been exposed to the word fundoplication is probably saying "Cracker?!" as they are on every list of what not to eat after surgery. Well after losing 5 of 41 pounds you get a bit creative. The list of approved foods doesn't work for Ben because he doesn't eat any of them. I can count on one hand the foods that he approves of right now. He would like to add pizza and french fries but we are holding off on trying those because they are on the "MAYBE NEVER AGAIN" list. He is tired of his choices so attacks meal times with as much gusto as my hubby tackles kitty litter. So... we spend hours eating right now. Add in potty stops and diaper changing and that's a full day! I have just looked at the process as how our day goes right now and I feel awful when I lose patience with the snails pace that we are moving. I have nominated myself for the "Crabby Mom" award at least 3 times this week and it's only Wednesday! It was so liberating to have my dear friend tell me that she doesn't know how I do it. She was jumping out of her skin just watching how slow it goes. Oh yeah-we used to move faster than this and we will again. Right now we are healing and strengthening. But, it sure was nice to have someone remind me that I am being more patient than I feel.

I'd say he's worth the time!

Shannon

It's raining

I have been spoiled by a beautiful and hot summer. This rain is turning my stir crazy children into Zoo animals. We haven't been out much since the fundo and the rain is just making it worse. I actually had to look for Kiera for what felt like ten minutes but was really about 30 seconds. I finally noticed Ben looking at me like I was crazy and a pile of laundry on the floor. Could he have just told me that his sister was in the laundry basket. Guess not. This will just have to be my "I lost the baby" story for Kiera. Ben was lost at about this same age for more than 30 seconds. With no sibling to rat him out it took two laps around the house to notice that the living room curtains were giggling. Stinker had just learned to crawl so I wasn't expecting to lose him.

The day started beautifully! I woke up before the kids, actually had a sip of coffee then Kiera started talking to her "guys" that she sleeps with. Ben slept late and woke up a happy guy too. He asked about my dreams then asked Cookie Monster what His dreams were about. Ben then put on his best Cookie voice and answered "Me dream about cookies!". This whole pretending thing is so new and exciting! You take for granted that most everyone develops in the same order and at about the same pace until you have a child in your life that doesn't. I am the luckiest Mama in the world because I get to see every baby step of his development. We get to look at Kiera and be amazed at all the steps she lumps together as she leaps forward but we get to enjoy every moment of discovery with Ben. Anyway-then Kiera climbs into Ben's bed steals his blanket and we were off and running. By about diner time we were all done being couped up together and started watching the door for Daddy.

Looks like more rain tomorrow-I better figure out how to be super Mama, and fast!

What we don't know

No one could have ever guessed that Ben would be doing so well less than two weeks after surgery. We had our first outing today. I probably could have forced the issue but somehow it just seemed a bad idea to go out and play when everyone is warning you against falling and germs. Today we went to the park. We met some dear friends who helped me keep track of Kiera so that I could stay close to Ben. Would you believe? We played for over an hour climbing and walking and still NO nap today. He is getting the hang of drinking while he eats and doesn't seem to be losing any more weight. Not gaining, but not losing is the first step. I know that we have a long road ahead but every day what we don't know seems less daunting.

Just some more details that have been shared with other support forums (PAGER www.reflux.org). Trying to put the pieces together a bit because I never seem to have/make time to do the supper long post that this event seems to want. Ben is doing great! We had the surgery at U of M last Wednesday. Everything went smoothly for the surgery but it took 4 hours plus a little. He was pretty uncomfortable and confused in recovery saying break-your-heart things like "I want to feel all better" and "I want to be happy" but we made sure that he was comfortable and moved into his room. He learned the hard way the next morning that it was a bad idea to pull out your IV. That was our only bad experience but I think that it measures up as "pretty bad". You see, UofM has an IV team that works the main hospital and the children's hospital(Mott) so you have to wait for the team to make it's way to you for a new IV. We had a STAT order for a restart because he couldn't take anything orally and it took 4, yes 4 hours to get a new IV. That means that he was without pain meds and fluids for almost 6 hours! He was getting IV pain meds every 2-3 hours and was supposed to get Zofran during that time so he started retching just a little but it caused him enough pain that he was holding his breath because it hurt to breath so in turn his sats were in the toilet. It was a pretty brief (half hour) time that was BAD but I was still pretty hot about the whole thing. The rest of Bens recovery has been great! He came home Friday on soft foods and is now just stir crazy being trapped in the house. He is really picky so his choices of food are yogurt, milk, pureed fruits and veggies. That is all we have been able to get him to eat so we are eating supper high cal yogurt and getting pretty creative to add cals to the pureed stuff. We did not get a g-tube so we are doing our best to minimize weight loss. He has gained a ton of weight in the last 9 months (9 lbs.) so now is the best position we have been in to have some weight loss. It took him a year to gain 3lbs. and we jumped for joy when he hit 32lbs. at 3 and 10 months. Two weeks ago he was 41lbs and 43 1/2 tall. He had a GI bug that took 2 and now he has lost 2 more since surgery but he is still trucking along. This has been sooo much better than the pictures I had painted in my head because we have had very little retching and good pain control but this is still a really big deal. We are praying that it is all worth it to him in the long run. Time will tell.

Yep...

I decided to pull together the updates I had put out in e-mail so that they don't get lost. No one really knows to look here to keep up but it will be a good way for me to keep track.

Tuesday July 31, 2007

We are taking Ben to UofM tomorrow for fundoplication surgery. He has very serious reflux which often results in aspiration. This aspiration in turn causes pneumonia and potentially some much more serious problems. After a lot of research and doctor consults we have chosen to try this difficult procedure. If the procedure is successful, Ben will no longer aspirate and lets face it, no stomach acid in your lungs is a good thing and worth fighting for. This is going to be pretty hard on all of us but is an especially long recovery for Ben.

Thursday August2, 2007 12:19pm

He is doing great!
Ben made it through the surgery without any complications and is recovering better than expected for the first 24 hrs. He has 5 small scope sites that all look very good and he is being a real tough guy. If you ask him how he is doing he says "I'm being very brave.". He has been up to use the potty and taken sips of water but other than that he just wants to "take a rest" and watch movies. Other than learning the hard way that it is a bad idea to pull out your IV we have been quietly recovering.
The rest of us are doing really well. I'm sure that it will be a few days before we really take a deep breath but Ben has proven yet again that he can overcome anything.

Thursday August 2, 2007 11:07pm

He is still doing great!
My sister took this picture so that I could put out this e-mail and show you all how well he is really doing. He seems to have overdone it a bit today so he hit the hay pretty early but over all he is doing so well that we are talking about going home before Sunday. That was great news until I pictured how much Kiera is going to want to hug her big brother : ) He has graduated to drinking milk and eating pureed fruits and veggies! This is pretty exciting since it could have taken him a lot longer to tolerate soft foods. Lets hear it for Ben!

Friday August 3, 2007 11:11pm

We just put our amazing son into his very own bed!

The docs are more than happy with his progress. We seemed to have a handle on his pain, he is eating what is considered a "full soft" diet, and is drinking like a champ. I am a bit overwhelmed with the line-up of 7 medicine bottles on the counter but we hope to put them away in the next couple of weeks and be back down to 1.

We are so relieved to be over this first hurdle and he cleared it by a lot. We are really lucky to have so much support from him and all of you! Thank you again for all your thoughts and prayers.