Still in the hospital

Well its Wednesday and Kenny is still in the hospital. It has been one thing after another with my poor little guy. Sunday he was feeling a little bit better, heck...Saturday evening he was smiling and playing with his toys with me. He still had his really bad cough and the oxygen saturation was down. By Monday, he was looking really crummy. I had Sydnie, Kayleigh and Gina home really, really sick with fevers, coughing and runny noses (basically the same thing that Kenny has) so I couldn't go to the hospital to sit with him. My sister went for me and sat from 12-4 and then I went from 4-10. When she was there, his fever spiked again and to her, it looked like he was having small, very short seizures, When I got there at 4, it DID look like he was having focal seizures (these are seizures where a person just stares for a few moments). I told the doctor about it so yesterday (Tuesday) They did another EEG on him. We should know the results today. His hair and head are covered in glue...poor baby. So, in the time since Saturday night (wen I thought he was feeling better), he developed an ear infection, hasn't been able to get rid of his fever, and still has the cough (although not as bad). His other problem that they are trying to work out is him not being able to hold down his feeds...at all. Last night when Tony and I went down there, he was playing and smiling with us...but still looked/acted really sick. I laid him in his crib so he could get comfy and fall asleep, when all of a sudden, he projectile vomited everywhere! It was horrible. He just wouldn't stop throwing up. We had to give him a sponge bath and change his whole bedding, he even got the floor! So now we are back to square one with the whole feeds thing. I have no idea when he is going to come home. All I know is that he is really sick. They need to get his throwing up under control, his feeds regulated, his fever to stay away, his oxygen saturation in a high/normal range, his G-tube site is looking like it is swollen and infected again as well...and figure out why he is having small seizures. I am so scared for my little boy. I never thought that I'd have to worry about if my son would die from a simple virus or go into a seizure and not come out of it. My anxiety level is through the roof. Our other kids have been so awesome through this whole thing. Getting their homework done. Not fighting with each other...just being very good kids. It has just been a nightmare for all of us. Worrying about Kenny and having to deal with sick kids at home but wanting to spend my time at the hospital with Kenny because he is all alone and so sick...it sucks so bad. Thank God for my sister Andrea. She has gone to the hospital when I couldn't and also has come over to watch my other kids so I could go to the hospital. She sat for 4 hours at the hospital just holding Kenny! I am trying to stay very strong and know that God has a plan..but, (I'm being very honest here) I have not been a big fan of God's plans lately. How do I trust in God if he has taken one of my kids already and my surviving twin is so, so sick with so many health problems? I just want Kenny to be healthy and normal....is that to much to ask for? I never thought that after his nicu stay, that I'd have to worry about him getting so sick from his chronic lung disease, that he could possibly die. I never thought that he'd have seizures...especially since I was sooo proud of him for never having a brain bleed of any kind when he was in the NICU. I never thought that we'd be spending Nov-May in the peds unit at the hospital where all the nurses, doctors and cleaning crew knows Kenny...very well. I have sleepless nights wondering if I'm going to be getting a call in the middle of the night from the hospital.

So, the plan of action today is to find out the reading of the EEG, figure out if he needs a Nissan fundoplication procedure because of his constant vomiting (which is not good for his esophagus or teeth). To make sure his fever stays away and that his lungs are clear. They gave him a new IV line on Monday so they can give him fluids if he needed them (which he did/does)./otddfl

u3

Times like this, I really wishm

So please keep Kenny (and us) in your prayers. This is no just a little cold that he got...this is very serious. He is facing many problems all at one time.

Thank you again.