I started a whole other post 2 days ago, but things changed at a fast rate, so now I will be updating on what happened these last two days...
On Sunday, were in the car coming back from school shopping (yes, we are still doing last minute stuff) when all of a sudden, Kenny started to cry. His cry was like he was in pain. I looked at his port site (I don't quite know the correct terms of the g-tube yet) and it was red...like irritated all around the port. It was also very hard and extended, like he swallowed a tennis ball or something. I thought it may be a gas bubble that I hear so much about with these things, so I opened the port and let some air out naturally. I thought it worked, but as the evening progressed, he just got worse and worse. I put him to bed because he was just screaming and crying. He didn't want to be held, didn't want to walk...just in a lot of pain. See, the problem with Kenny is that he is non-verbal so he cant tell us what is wrong. He was saying "ow" though. To try to touch the site was almost impossible. I ended up getting a syringe and tried to see if I could pull out some air straight from his belly...ummm...ewwwww!!! I was basically suctioning out his stomach contents...well...only 10cc because I was about to throw up from it all. I guess I still have to get a strong stomach for all of this "feeding tube" issues. Well, that didn't work, so we ended up giving him Motrin. Then we decided to just take him to the ER. Half way to the hospital, he calmed down and stopped crying. I was thinking, I He ended up falling asleep...only to wake up again 4 hours later (yes, when the Motrin wore off).
At that point, he ended up waking up EVERY 4 hours that night. I couldn't give him his over night feed either. He woke up screaming and still in pain, so I called his doctor. (This is his stomach before we went to the surgeon to remove the gauze)
We got an appointment with his surgeon who insisted that it was from the dried bloody gauze that was stitched to him to hold the g-tube in place. He removed it (all the while, Kenny is screaming in severe pain). It was almost barbaric the way they did that. My poor little guy should NOT have to suffer through anymore pain. Anyways, he told me to go home, give Kenny a bath...oh, and if he wants to go into a pool, he can...WHAT??? ummm...my kid has open sores around his site and it was bleeding and oozing junk from it...why in Gods graces would I put him in a pool?!! I take him home without any questions answered...I even questioned the fact that it looks like it was infected...he insisted that it wasn't. Jacka$$...he was sooooo wrong.
When we got home Kenny was still in a lot of pain. I put him in his highchair and hooked him up for his 3:00 feeding. Ten minutes into it, he was sleeping. Kind of odd for him, but I figured that he was just tired from being up the night before. As the day went on, the red mark didn't go away...it actually looked worse. By 6:00 His head felt warm so I took his temperature...101*!!!
I called his Comprehensive Care doctor because I know all the signs of infection, and he is experiencing all of the above. She tells me to get him to the emergency room. So off I go. Another hospital visit. To make a long story short. In triage, his fever shot up to 103. We were in the ER till 3:30 in the morning with doctors, nurses and surgeons coming in and out of our room. Got him on antibiotics and in a room on the famous 4th floor, pediatric unit. There was talk about taking the tube out at one point thank God that didn't happen.
So for the last 2 days, Kenny and I were living at our home away from home. The doctors wanted to keep Kenny until today (Wednesday), but I convinced them to let us come home last night. I just couldn't see sitting in the hospital one more day. Kenny was starting to get antsy, his fever broke and he already had 2 doses of IV antibiotics in him. I could take care of him at home much better than sitting in the hospital bed where he was hating it.
So, our adventures in this crazy life is just keeping us on our toes. I am thankful for all the caring thoughts and prayers for our miracle, Kenny. I am thankful for a great group of doctors that Kenny has (not including the surgeon). I am extremely grateful for the nurses...they are run ragged in the ER and in the peds unit.
These hospital stays are starting to take toll on Tony and I. This is the week before school. I have so much to get ready...uniforms washed, ironed and put away, school supplies put together and shopping to do...school and grocery. On top of the daily stuff...cleaning the house, laundry, and taking care of the kids. The kids are doing the last of the homework they got for over the summer...and we still have to make 5 stepping stones for the 1st day of school.
It's so nice to be home...and hopefully we will get back into the swing of things soon (and no hospital visits for a looooong time).