Ian Home - Update

[Guest guest]

Hey everyone. <LOL> I had reviewed everyone's messages earlier and

forgot to post something about Ian!!

Well, from the beginning.......Ian was admitted on Wed morning (we

were able to keep his continuous feeds the night before with his

Nutren, jr. which was a change of plan but a great one at that). He

had his surgery at 1:23 pm and was in a lot of pain when he woke

up. Finally at bed-time I made them give him some Morphine and he

slept comfortably the entire night. Since he was on D10 the entire

time, his blood sugars remained stable. We started 1 hour bolus

feeds the afternoon of Thursday of 1/2 strength Nutren and Pedialyte

mix and he handled the feeds very well. By Friday, he was doing

full strength bolus feeds and Friday night continous feeds. He did

great. He was still in lots of pain if we didn't manage it properly

(i.e., Tylenol every 4 hours). The problem though is that my

children do not respond well with Tylenol and I finally got them to

agree with giving him Motrin for the pain. He did MUCH better on

the Motrin. They wanted us to actually go home Friday night - as

insurance had not approved another night stay - but, since Ian was

still on the IV at 30 ml of D10 and I was worried about the

hypoglycemia - I " refused " to go home (can you believe that? LOL)

and said we would leave the next morning once I was sure his blood

sugars would be stable through the night. Well, they were and we

took him off the D10 at about 11:00 pm Friday night. The next

morning they tried to kick us out at 7:45 am but I reminded them

that he needed his bolus feeding at 8:00 am, he needed pain meds at

8:00 am, and they hadn't even shown me how to clean the site yet.

LOL - can you believe I wanted to stay another hour? Anyway,

everything worked out great and we got home on Saturday morning at

around 11:00 am. Ian during the whole time had trouble with sitting

up and walking. I was told a lot of it was fear about the

new " feeling " of the site - but, I know it was painful for him too.

He couldn't even walk until Friday evening.

Ian over did the exercise though on Saturday and paid for it Sat.

night and this morning. I made him rest more and yesterday and

today did not allow him on the stairs.

We had a home health nurse come to the house today and she said

everything looks good so far. She will be here twice next week.

Cleaning the site is very painful for me to see and do. It really

was difficult seeing him in so much pain and being so scared. He

kept telling me how frightened he was at the hospital and that made

me pretty sad for him. He was such a trooper though and I was so

proud of his bravery. By Friday he didn't want anyone messing with

him anymore and would cry when a nurse got near him. Today he cried

with the home health nurse. He is just so overwhelmed by it all.

She suggested I take him back to the hospital just to say hi to help

with the " association " aspect and I'm planning on baking cookies

this week for the nurses so we can do just that (say hi and then

leave).

For the first time - I actually saw the " hole " underneath the

plastic tubing that goes in his stomach and that really bothered

me. Ugh - just thinking about it grosses me out and makes me

queasy. But, he " really " cried tonight when I was cleaning his

site. I was told the puss and stuff around it was normal. Great,

eh?? LOL I'll be glad when I start getting " used to it " -

hopefully, sooner than later! LOL

My mom has been a great help with the boys. She's decided to go

home a little earlier. But, I've found that since I'm familiar with

the pump and things are going so well at home - she misses her dear

sweet husband and I'm " cutting her loose " from her grandma duties.

Xander has had a difficult time through all this - but, I let him

stay up late tonight and we did a " project " together alone. Things

will start to mellow out and if I can just keep Ian out of the

hospital for awhile - that should help.

We have had meals brought to us every night since the surgery and

they will continue until this Friday. It has been a God send and we

are so fortunate.

THANK YOU to all for your gracious thoughts and prayers through all

of this. I'm so very fortunate to know all of you and be a part of

such a generous and loving support network. My best to all of you.

- H