update on JD and Olivia

[Guest guest]

It has been awhile since and I have sent an email out about the kids. I

first want to start off by saying thank you so much for all of the prayers,

concerns, and the help of those that have been coming up to the hospital to sit

with JD. Sometimes we just need someone to talk to and get out our

frustrations. and I have just decided that when JD comes home (maybe April

or

May), he will have 24 hour nursing care for a little while ,.and that the room

is

not big enough for both JD and Olivia, plus the nurse and what ever else he

may need. So the guest room is right across the room from JD and that we are

going to take the bed out and put Olivia's bed (which is still in our bedroom)

in

the room. This will eventually be her room when she gets older. and I

already have a plan of action of where we are going to change JD's trach ties,

trach..ect.

JD has had his ups and downs lately. He would have good days and some bad

days. There were days that I would see him get frustrated and can't do anything

but cry. One day I just stood outside his room balling my eyes out and the

intern came by to calm me down and found me a doctor to update me. I think the

attitudes in the nurse's changed as well when they saw a mom crying for her son.

JD also has a really bad, I mean the worst ever, diaper rash. They had to call

in a wound specialist to come by and check on him. I have already gotten the

hang of how to take care of my son. As soon as I get off of work, I go and get

JD's food ready, he is now up to 3 oz. I put it in the bag and start the

machine up. He still gets fed over an hour time. During this time I check his

diaper for changing. Sometimes he sleeps and sometimes he is awake moving

around.

Around 4:30 the nurse or RT will come in and ask if I am ready for his trach

tie change. This is my favorite part, I just feel closer to JD when I am doing

this. I always have everything ready to go, I even cut the ties the right

length for him. I like to make sure we have everything ready before we begin.

After we change the ties then it is time to suction the trach, nose (which he

really hates a lot; can't blame him) and then his mouth. Usually this is also

the

time for his breathing treatment. If you think this is a lot now, his morning

is worse when he has OT, PT, Speech Therapy, Child Life..ect. After we are

finished he is usually worn out and ready to sleep. Last week, I got the scare

again. Somehow, JD got his trach out. I think this might have scared him and he

didn't know what to do, he was receiving OT.They had to call Code Blue, all

they had to do was bag him. I called when this was going on and the nurse could

not come to the phone and was told that I needed to call back. I heard the

alarms, but just asked if everything was okay. I was just told to call back in

10

minutes, please. So I called back and was told what had happened. I left work

and get there as fast as I could, came into the room and saw JD hanging out

just looking better than ever. I told him that he sure knows how to get a

crowd. He was probably thinking " hey mom, what's going on " While I was

suctioning

him, I went to his nose and got the shock of my life. My son slapped my hand

out of the way. I was speechless, I can't believe my son just did that. JD has a

way of having the nurses come in when he sets off the alarms. I was holding

him and he kept grabbing at one of the monitors and he was awake, he got it off

and set off the alarm. As soon as the nurses came in, he went to sleep, he is

probably thinking that if they think he is asleep then they won't think he

did anything wrong. He is too funny. They were worried last week because JD kept

getting his heart rate up, running fever..ect. Finally on Friday they

realized that his diaper rash was getting worse that could be the answer. That

afternoon he was naked and very happy.

Olivia is getting so beautiful. We got her a bumbo seat and she loves it. She

now weighs 12lbs. She is making off sorts of noises and smiling. She does cry

when she doesn't get her way. She got to see her brother a couple of weeks

ago. She grabbed his face and he got mad at her and poked her in the eye. Both

were crying and kicking each other. They had to separate for a while. Olivia is

very observant and likes to watch her brother get his breathing treatments.

She is still rolling over and playing with her toys.

Well, that is enough for now, and I really appreciate what everybody

has done.

Take Care

, , Olivia and JD 5 months.