Surgery This Week

We just got the news yesterday from UCSF that they found room in the OR for Jayden's g-tube placement. His surgery will be this Friday morning at 8:30. Jayden and I will leave for SF tomorrow afternoon to have a sleep study done that night. This procedure is to tell whether or not Jayden will continue to need to be on a concentrator at night. It's really not a big deal. Friday morning is the procedure that is giving me anxiety. I am praying that Jayden will be well enough to undergo this procedure and will come out without any problems. Please keep him in your prayers.

Big Decisions For Our Family

I have been struggling for a long time about whether or not Jayden truley needs to have a g-tube placed. Doctors have brought it up to me in plenty of past appointments, telling me how great the g-tube is. I have really taken pride in the fact that I am able to give Jayden all of the nutrients that he needs by feeding him bottles of pediasure and feeding him pureed foods. I think most of you would agree that he looks like a typical healthy four year old. Most people who are involved in his care are suprised to find out that he doesn't have a g-tube. This last episode of spending time in the hospital only confirmed what I have been dreading. Although I knew it would eventually happen it doesn't make it any easier to come to terms with. Jayden is tentatively scheduled to have surgery on March 31st. The docs tell me it is a fairly simple procedure, they do it all the time. This does not make me feel any better. I haven't been able to sleep at night because the minute my head hits the pillow I start thinking about all of the things that are about to change in the up coming weeks. In the past Jayden has always passed his swallow tests. This basically means that when he swallows the liquid or food it goes down his esophagus and not into his lungs. But with his last episode with pnemonia it is clear that he is silently asperating. Slowly but surely I am realizing that Jayden doesn't enjoy eating, infact it is a lot of work for him. I spend a good chunk of my day feeding him and trying to get his meds in him without him choking. With all of the time and energy I will save on feeding him a bottle I can use that time to focus on his other needs. This week I took him to physical therapy and they brought it to my attention that Jayden's left arm is getting a little tight and wanting to stay relaxed with his palm down. That just means more massaging and stretching for Jayden. I am sure he won't mind very much. Please keep Jayden in your prayers. Pray that we will make it through next week without any major problems and get to come back home quickly.

One Sick Little Boy

My poor baby Jayden has been a pretty sick little boy these last couple of weeks. He even had to spend a few days in the hospital with pnemonia and RSV. Couple of weeks ago I put Jayden to bed like I usually do and all of a sudden he started crying. I mean really crying! He started to "chill" like you do when you have a fever. His crying and "chilling" went on for about an hour before I could see from a thermometer that he actually had a fever of 102.5. And then ofcourse came two huge seizures in a row. Jose and I were both trying to console him. We had him sandwiched between us, I was rubbing his back and he was rubbing his legs. Then during the second seizure Jayden threw up ALL over me! YUCK! I was more concerned with him asperating than I was about the vomit that unbelievably got all over me and not all over him. Jayden's breathing become short and quick and I got a little worried. I gave him a breathing treatment which didn't seem to help. The next day I took him to the doctor and his SAT's were about 90. For the next four days around the clock every two hours that kid got breathing treatments. And even with all that effort I couldn't keep him out of the hospital. He was admitted at a SAT of 89. Once he was hydrated in the hospital he was a totally different kid. His eyes were wide and bright, he was vocalizing all the time, and he was very opinionated. All of this showed me that I really I am not keeping him hydrated the way he needs to be. He went home with a concentrator at night (oxygen) and is still getting breathing treatments every 3 to 4 hours. I am so glad he is home. He was doing so well for so long and then all of the sudden everything hit all at once. We have decided to further look into Jayden getting a feeding tube (mic key button). Right now I am syringing all of his bottles in him. Eating for Jayden is not pleasurable but hard work. This was a very tough decision for me as a Mom. It was the last thing I had control over with him. I am trying to look at it on the bright side, it's just another tool to help me better take care of my son. I guess I could use all the help I can get. He might be having surgery as soon as the end of this month, depending upon if I can get him well enough to go under. Keep him in your prayers.