Monday, August 9, 2010

5 days after the surgery...

What a week it has been. Kenny was in tons of pain after the surgery. He would wake up screaming and shaking uncontrollably...that is when the morphine helped. He was not himself. He didn't want to move from the crib. He just laid there and slept. My heart was breaking for him.
Each day, the pain lessened and lessened until yesterday he was feeling good enough to want to get out of his hospital crib and walk around the entire 4th floor.
The surgery was a success. I spent everyday and night (except for 1) there with Kenny holding his hand as he slept. They started the feeds slowly through the feeding tube, so he wouldn't get too much and not be able to handle it. We are finally up to continuous feeds at night and 3 bolus feeds during the day. Now for those of you who don't know what I mean by this...just like I had no idea, Continuous feeds are when the pump is set for so much formula and it pumps it in to his tummy all night long just very slowly. His bolus feeds are also run through a pump but they are 8 oz run for just over an hour. So, this is where we are going to have some problems because at the hospital, we kept him in his at home, he is not going to want to sit in a crib or playpen for over an hour. I am now trying to find out if they have a backpack or vest to put on him so he can walk around with the pump. I put him into his highchair for the 3 feeds during the day...and you know what, it wasn't so bad. Now to figure out what to do at night. UGH.

So, if you haven't figured out by now, Kenny came home last night (around 9:00)...kinda surprised us that they said he could go home...but he's happy and that's all that matters! We are nervous about the whole thing, but I feel confident that I can work the pump and do what has to be done...just say a prayer for me...tee hee. We just have to figure out where he is going to be sleeping...see, he's been sleeping in our bed with us for the longest time, because we wanted to make sure he was ok during the night...with the seizures and throwing up and now, we just got used to him sleeping in our bed. Gina is sleeping in his crib (which is in our room) and we took Gina's crib down (the one that was in little Tony's room). So, now we have to set up Gina's crib somewhere...Tony doesn't want a baby in his room and there isn't much room in there anyhow...So we may have to move the dressers around or get rid of a few to put up the other crib in either our room or the girls room. This way, Kenny can sleep in a crib and be able to get the continuous feeds all night long. Again...this is a BIG problem. I had a small meltdown last night after we brought him home and set things up. We have more medical equipment in our bedroom and house...there just isn't anywhere for us to put it all! All my emotions just erupted last night. My son has a hole in his tummy. His feeds are not just feeds, we have to treat them as medicine. He was in soooo much pain for heart was breaking for him. But he is home with us and God feels that we (Kenny, Tony and I) can handle all of this. And for that, I am honored(exhausted, but honored).
Thank you all for the well wishes and prayers for Kenny throughout this time. They have worked wonders! Honestly, thank you.
One last thing...I have to say, I am such a nosey person...that while Kenny was in the hospital, I made friends with the 3 different patients moms that shared the room with Kenny. The first mom, her little boy broke his leg...really bad., the second one...whom I had a strong connection too, her little boy had his adnoids and tonsils taken out and ear tubes put in. We sat and prayed. That was a very touching time for me. Made me feel at ease with everything. And the third mom, her little boy was a 28 weeker whom had just left the NICU last week...and was back in the hospital with reflux problems. I told her to not to worry about anything and that her doctors were amazing people (yes, Kenny had those doctors as well).
This whole hospital stay has made me realize that no matter what color, nationality, religion, etc...we are all humans. I am so happy that my big mouth, noisiness took over and that I started to talk to these women. They each impacted my life very much, and I am grateful that they were there to talk.
Not to mention all of my friends and most family that has called and sent well wishes. My one friend made my life that much easier with what you sent...thank you! My friends who have gone through this with their kids...WOW. You guys are my hero's. Honestly. It is hard to see your child in pain....with a hole in their tummy...and have to learn to pretty much, be their nurse. It just amazes me that how some people have no clue how hard life really is. They just ignore and fluff it off. They carry on with their lives without a call or anything to ask how Kenny is doing...not even to drop a little note on FB. It is just sad. I guess, out of sight, out of mind. All I have to say is...WOW. Thank you all that have helped us this last week. From watching the kids (Nick and Marlyn) so Tony and I could spend some time at the hospital, just the 2 of us with phone calls and e-mails to see how Kenny was doing...Thank you so much.
So anyhow, Kenny is home. Its been very hectic here with me trying to make sure he gets his bolus feeds every 3 hours...on top of cleaning the house, taking care of the other kids, washing clothes, and getting things ready for the kids to start school. Its a little bit more work then imagined, taking care of a special needs child but God thought we could handle it..and the smile on Kenny's face and the love in all my kids hearts shows us that we have been and are doing good by it.


Unknown said...

Michele, yes they do make a backback! It is made just for that the kiddo can wear it on their back it has a little opening where the tube comes through, its really neat! The thing we used to use during the night was a bag stand its like an i.v pole but its for the bag and its adjustable in height we no longer use ours because Jon gets gravity bolused because he seems to tolerate that better than the pump. If you get in touch with your hospitals home medical center they should deliver those right to you. Good luck and it does get easier

Anonymous said...

I note that your husband belongs to a facebook group that wishes the president to be dead like Farrah Fawcett and Michael Jackson. Yet your husband considers himself a Christian?'

Regardless of whether or not you agree with the president's politics, he is a devoted father to two young children. It is appalling that your husband is father to a special-needs child, yet wishes two other children to lose their father.

Doesn't seem very Christian-like.

Michele said... Anonymous,
First off. On Facebook there are stupid "groups" that mean nothing...And THAT is what he had on there. It was a meaningless "like" that people...many people have hit that like button on. Doesnt make them wish harm on anyone, especially the president of the united states. Secondly, He is very much a Christian...more so than most. It doesn't seem very christian of you to come to conclusions after stalking his facebook page that he wants the president dead...far from that. You don't know him or I personally, and even if you do, you have no right to judge us. Just like we dont have any right judging you. This has nothing to do with my family's blog or my is a personal attack of which I am sorry that you are such a judgemental person. May God forgive you for judging someone. Again, I am sorry you had to first such a coward and be "anonymous" and secondly say something that has no impact on anything. But I forgive you. Have a nice day.

Justine, Romy's Mama said...

Michele- Thank you for your wonderful comment. It's good to hear that Kenny is thriving from the g-tube. I can't imagine what it would feel like to see Romy with some meat on her bones, lol. I checked out your blog and I've pretty much come to the conclusion that you're a superhero.

mpence said...

Glad to hear Kenny came through! What a week! You are absolutely amazing that you go through all that you do each and every day with a smile on your face and such a positive attitude!

I will continue to pray for Kenny and for your family!