Surgery tomorrow

We have been able to manage the prolapse by using surgical tape to tape Hunter's butt cheeks together...the poor little guy but at least he hasn't been drugged for 2 days! Because Hunter's stool is so loose the taping does not cause him any issues.

The surgeon came and spoke to us on Monday and Hunter is booked for surgery tomorrow at 1400hrs to have the prolapse fixed. We hope all goes well.....I will post an update as soon as I can regarding the surgery.

We went into hospital Wednesday afternoon....over the next couple days the antibiotics were changed and levels adjusted in order to kill the infection. We were told we could go home on antibiotics Saturday if the blood cultures came back clean. We were very hopeful because we really wanted to avoid having to put Hunter through surgery to get a new line.

The antibiotics did what they always do...they caused Hunter (who already has chronic diarrhea), to have diarrhea! If you remember Hunter sometimes has a rectal prolapse when he stools and we have to push it back into him. Well since he's been stooling even more due to the antibiotics the prolapse has been coming out more frequently. We've been able to put it back in but today it came out and stayed out. Hunter needs to relax in order for it to go back in but today every time I tried to push it in he would push back. They gave Hunter a dose of Morphine which did absolutely nothing to relax him. They gave him a second dose....still not sedated....they gave him Ketamine (sp?)...knocked him out cold....the prolapse was put back in and Hunter had a well deserved nap.....

Hunter's prolapse came out again in the afternoon....doctors were notified etc and they want him sedated basically until Monday....we are not OK with this.....but the flip side is the prolapse stays out and can dry out or stop blood flow to the area which causes another list of problems! So again they gave him some Morphine which calmed him a little but not enough to put the prolapse back in. They gave him another sedative (can't remember the name right now) and it helped a little....the doctor tried putting the prolapse back in and it eventually went. We are hoping it stays in over night so he doesn't have to be sedated for the next couple days....

As for the line infection.....it didn't grow anything after 24 hours which is very hopeful that the antibiotic is clearing it.....and also means Hunter won't have to go in for surgery. When we can come home Hunter will be on antibiotics for the standard two weeks......we are just waiting to hear if the antibiotic levels are therapeutic or if they need to be adjusted....and of course we are waiting to hear what will happen with the prolapse.

Round and Round we go

We got a call early this morning from the hospital...The culture blood work they took yesterday is still growing the infection so we have to bring Hunter back in to the hospital! I really have no other details than that right now but will update as soon as I can........

First site infection

Last Tuesday I removed Hunter's port needle to do his weekly change....it looked red and the longer I kept the needle out the more the site swelled. I brought him into the day unit at the hospital and they said he definitely has a site infection so we will be admitting him. They took blood cultures from his line and he grew a gram rod negative infection. So this meant he had a site infection plus a line infection. The odd thing is that Hunter has had two previous line infections within the first year of his life...and he became very sick, fever, lethargic, he would look just terrible. But not this time around. You would never know he was sick...docs thought maybe the culture became contaminated somehow but the chances of a gram negative infection having a false positive is minimal. We were in hospital for four days which is long enough...they kept us to see what the sensitivities of the infection were meaning they wanted to see exactly which antibiotics he should be on to be most effective. The most effective one of course, was not covered for home use...only $60/day!!!! So they sent us home another one that is covered and they said it should do the trick...lets keep our fingers crossed...

I don't know why it is but it seems whenever something is going to happen with Hunter it is usually around his bed time.....last night he was jumping in his crib and he must have been too close to the rail and when he was on the "up jump" he pinched his skin between the railing and the port and bent the port needle...it swelled the size of half a golf ball....we of course had to take the needle out because it would not longer infuse his TPN. It was so painful for him...Chris tried twice to get the needle in and could not get good blood return meaning it was not sitting in the right spot...I really think he had it in the right place but it was so swollen it was not reaching the back of the port. We paged his awesome doctor and he said to put pressure on the swelling to get the blood out of the area and try to insert the needle again....if it does not work we would have to bring him to the hospital...we massaged that thing for 45 minutes and then Chris got the new needle to work....stressful on everyone involved let me tell ya.....hearing your child scream in pain because of something you have to do to him for his survival is not an easy thing to get used to....but we work on it :))

This morning the swelling was down some but the area is still pretty red....Hunter is his usual happy self....he is a trooper...he amazes me!