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!

I was just saying to a friend about a week and a half ago that I don't really know what we'll do when Hunter gets the common kids sicknesses...cold, flu etc....well two days later Hunter spiked a fever...he had been teething and had his usual rosey checks and diaper rash. The fever got to the point where Chris called Hunter's doctor and he wanted us to bring him in to emerge...Hunter's doctor called emerge and was told that all the beds were filled...he explained Hunter's condition (which they have a file for the size of a dictionary I'm sure)....she told his doc that since he wasn't critical they couldn't take him!! What...are you for real....his doc ended up calling other hospitals in teh area becasue with Hunter we never can be too sure if the fever is simply your typical kids sicknesses or if he is septic which means we need to get him in right away or things can go sideways in a hurry...I left work early and came home in anticipation of driving him 2-3 hours to a hospital that could care for Hunter properly...

Fortunately the fever broke and we decided to wait and see....Hunter seemed much better but the next day I brought him in to the doctor's anyway....Hunter had his first ear infection...we were able to get a presricption for antibiotics and we learned how to give them to him by gravity through his line...yet another tool in the tool belt for us....

Hunter has not been gaining much weight but what can you expect when the little guy was sick...so his TPN is being increased and hopefully we'll see some gains soon...Chris and I are becoming pretty efficient at putting in the port needle...we do it at home and have been getting it on the first try. Last week Hunter's needle was bent and we had to change it. When I took off the tegaderm (tape that holds the line in), the needle pretty much popped out...and it was bent...not sure how he did that but he slides up and down everything so I guess it was only a matter of time....he didn't seem to care which is the most important thing!

Hope everyone is having a great fall....Hunter has been loving the weather and would be out there 24/7 if we let him!!

Happy Hunting to all of the deer Hunter's out there...opening day today!

Progression

Please knock on any form of wood before and after reading!!! haahah

We noticed lately that Hunter has not been vomiting...ever since the infection he had 1 year ago he has had an issue with vomiting....at times it was so bad he would vomit almost hourly! He was eventually started on two medications...panto IV to take the acidity out of the vomit/refluxing and metaclopramide which is used in cancer patients to reduce vomiting. The metaclopramide was a god send and reduced the vomiting to about 1-2 per day....we noticed lately Hunter has even been doing that so we thought we should take him of the metaclopramide and see what happens....its been 3 days and so far so good....we decided to stop the panto IV today as well....

We figured his little kidneys and liver don't need to be filtering anything more than is necessary and if the vomiting starts again...well...at least his body had a break from the medication....

We have been letting Hunter play in his food...he gets it everywhere and its a daily clean up mess....but he is starting to try new flavours and will put "puffs" in his mouth and actually wants to take a big bite out of pickles!! He also likes to drink apple juice and water out of mom and dads glass.....we give him some in a sippy cup sometimes but he has a meltdown when we take it from him....Hunter doesn't understand that if he has too much he could become dehydrated....he's really testing limits at his rip age of 18 months!!!

We decided to hire a live in nanny...we had one for about 3 weeks and she was given some terrible health news so she had to leave us....she was great and Hunter seemed to like her. We have hired another nanny who just started last week.....Hunter seems to like her as well so hopefully she works out and is competent to learn Hunter's TPN hook up and lock off....

Now that summer is almost over....I will try and keep the blog updated more than once every couple of months....