Confirmation of infection

Doctors have confirmed that Hunter had two potentially fatal infections which came from his gut and went into his blood. Because Hunter's bowels are not used as frequently as you and I, the lining which protects from infection may not be as strong. Hunter could get this type of infection again in a month or a year or he may never get it again. His system gets stronger as he gets older making him less susceptable to infections (as any child would be).

Hunter is going to be on two antibiotics for the next two weeks which means a longer stay at the hospital. He looks great and is smiling throughout the day but you can tell he is more tired. And of course not getting as much sleep as he would at home. It doesn't seem that he remembers his 2 1/2 month stay there and becomes upset if one of us isn't there. We have been doing shifts at the hospital so there are only a few hours in the day when one of us isn't there. Hopefully that makes him feel better....it sure makes us feel better!

Once the two weeks of antibiotics are complete, Hunter will have blood work to ensure the infections do not come back......if they do he will be looking at surgery to replace his line. We hope this is not something else he will have to endure at this point....keep him in your thoughts and prayers.

Hunter admitted back into Victoria Hospital

When we were discharged from Victoria Hospital we were told that Hunter's central line (broviac) was prone to infection and any infection like a cough, cold, ear ache etc would likely mean readmittance to the hospital. We were also given a list of things to look for in order to determine whether Hunter had a blood or central line infection. The symptoms for the later two are very subtle and can be a simple change in his behaviour or something more significant like a fever.

On Friday night we thought Hunter was acting a little different. We took his temperature over the next couple of hours and it would go up and down but not to the point of fever. Not wanting to over react, we paged his doctor and decided to wait and see if his temperature went into the range of a fever...it didn't. We gave him a bolis of saline to rule out any sort of dehydration. By the time we went to bed his temperature was back to his standard and his behaviour was not out of the ordinary.

We got up throughout the night to change his diaper and his temperature began to rise again but still not touching that fever point. In the morning we decided to page his doctor again for some guidance. Being the smart man that he his, Doctor Atkison said to bring Hunter into emerge to be on the safe side. I think he realised that if we were concerned enought to page him twice there must be something slightly off, or we had a gut feeling which in most cases you should follow.

We went into emerge Saturday morning and by the time we reached the hospital Hunter's temperature reached the low end of a fever. They took blood from his central line and a chest x-ray. The chest x-ray showed no sign of pneumonia but his blood work showed his white blood cells to be eleveated. This meant Hunter's body was fighting an infection they just weren't sure from where. Hunter was admitted and we went back to D7-300, the hospital floor we had been at for 2 1/2 months. Althought we had tried to prepare ourselves for this day, it was tough walking up there since we had only been gone a month and as a parent you automatically feel a sort of guilt that you couldn't protect your child from absolutely everything, especially an infection.

Hunter was started on antibiotics and by late evening we were told he had a line infection. Again the thoughts of guild started, "did we clean the line as best we could", "is there something more we could have done to keep the area sterile". The doctors and nurses told us continuously that they were impressed Hunter didn't have an infection sooner, even when he was in the hospital the first time since they are so common with broviac's. Apparently, if Hunter gets an infection anywhere in his body, his immune system will fight off anything foreign in his body, including his broviac and this is why infections commonly strike at the line.

Hunter slept alot today but would give out some smiles while he was awake. He is such a strong little boy! Hunter's doctor advised us that it would be a day or two to get conclusive results but that his infection may be stemming from a "leaky gutt" or a urinary tract infection. Although this subsided our guilt, it didn't subside our anxiety of "what does this mean?" If we understand correctly, it means Hunter will go through a series of antibiotics (as he would for any infection). If it is a "leaky gutt" and it persists, Hunter may need a transplant to fix the problem. We hope we never need to face this option but it seems Hunter is keeping us guessing and worrying. Because the prognosis has not been confirmed we don't have alot of information....Dr Atkison does not like to put the cart before the horse but as parents we want all of the options and possibilites yesterday.

Hunter no longer has a fever but is still getting the antibiotics and sleep he needs to fight his infection. We won't know how long Hunter needs to be at the hospital until they know for sure what the infection is and what antibiotics he will need.

We will keep updates as best we can throughout the following days.

Yesterday we decided to take Hunter on his first outing to the grandparents for a couple of hours...it went well...he was disconnected for 5 hours and when we hooked him back up at the grandparents we decided to make the drive back home (1 1/2hrs). Before we left we noticed there was air in his line that made it passed the filter (again!), no alarm went off on the pump and we were lucky to catch it (again!)...we fixed the occlusion and we left for the ride home....we got onto the 401 and drove just east of the Ridgetown/Thamesville turnoff...we heard a loud bang under the Jeep...hhmmm....then my steering started to go...great.....not crazy go but there's something definitely wrong...we pulled over and saw a lovely flat tire in the rear tire that I just had fixed the day before. So now we are on the side of Hwy 401, Chris is changing a tire, I'm standing in the ditch with Hunter since there are so many inconsiderate drivers on the 401 who refuse to get into the left lane when someone is fulled over (mostly truckers!). And of course I notice yet another air bubble in Hunter's line which has made it passed the filter and could potentially go into him...well doesn't that just top off the experience....Chris gets the tire changed and we get back into the Jeep and close everything up that we can so it is the most sterile we can have it and fix the occlusion! Hunter is screaming of course because...well....who wouldn't be! You would think this would be the end of the story......we pull onto our street and the pump starts beeping....the battery is dead! At least we were close to home for that one....Chris called the pharmacy and they sent us a new pump with new lines...and a nice new bag to carry all the portable things in.....we threw everything else out!!!!!

Needless to say...we feel we should never leave the house again!

Just an update with Hunter's medical side...his weight is up to 9lbs 13oz, his billi's are down again and his other liver levels are finally coming down. He did not have a bacterial infection and he continues to do well....

We've had Hunter home for a week and it's been a real learning experience, trying to figure out his sleep patterns etc. He is up to 9lbs 13oz and his billi's came down again this week...his hemoglobin stayed the same so no infusion needed!! yeah!!

Hunter is beginning to have some minor reflux issues. He threw up yellow bile for the first time yesterday so the doctor's started him on medication for the next two weeks to see if this helps. Hopefully it will remain minor and he won't continue to vomit. They also took a culture of his blood to rule out any bacterial infections in his broviac line. If he does have a line infection that means two weeks of antibiotics that he will have to be admitted back into the hosptial for two weeks to receive. We should hear today with (fingers crossed) good news.

Hunter's blood work from Sunday showed his billi's have come down again...we were very happy since that is two weeks in a row proving the previous Sunday wasn't just a fluke. His hemoglobin has dropped again so they have started him back on the oral iron.

We roomed in with Hunter on Sunday night and hooked him up to his new portable pump. The pump program we were trained on was not the program that our home pump came with so we had to trouble shoot and ended up hooking him up to the training pump. He slept through the entire night!!

On Monday morning we packed up and brought Hunter home!! We had a great day with him being line free for a few hours. When we attempted to use the new pump with the new program it did not work again...very frustrating. Two nurses were at our house to help out but they were not familiar with the pump nor did they know how to use the new program. So, for a second time we used the pump we were trained on with the old program. Today we have yet another pump from the pharmacy. We are testing it out using saline before hooking Hunter up so he doesn't have to go through the aggravation of being shuffled around while we try to figure it out.

Needless to say, we are happy to be home. Hunter is, as his dietician says, "perfect"!