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.
Hunter Thomas Reeve was born on March 12, 2009 at 2:38 in the morning at St. Thomas Elgin General Hospital. Hunter weighed 6 pounds and was four weeks early but appeared to be a healthy baby boy.Although Hunter was eating well he was steadily losing weight. Three days after his birth Hunter was released from the hospital and made the trip home. Due to the weight loss Hunter was brought back to the St. Thomas hospital and after a series of tests it was found that Hunter was severely dehydrated. An IV line was started in the top of Hunter’s head because he was too dehydrated for the nurses to find veins anywhere else in his body.Hunter was rushed by ambulance to the Children’s Hospital in London, where he stayed on the IV while doctors and nurses diligently tried to determine what was causing the dehydration. By this time Hunter was down to almost four pounds and struggling to stay alive. Hunter fought hard (even managing to rip out the lines that the nurses kept putting in) and was stabilized thanks to the staff in the Pediatric Critical Care Unit. Without their care Hunter would not have lived through the night.After exhausting all of the non invasive tests, doctors from many specialty units were brought in to try and find out what was causing Hunter’s illness. Dr. Bax of the Pediatric Gastroenterology team was brought in, and in Hunter’s first week of life, he had his first surgery. A sample of Hunter’s small intestine was obtained through a biopsy and sent off for analysis. This is a rare procedure to have done on a baby and is not part of routine testing. Miraculously enough, this procedure determined the cause of Hunter’s decline: his small intestine was not absorbing any nutrients from his food. In fact, Hunter was outputting more than he was taking in.Hunter was diagnosed with an extremely rare and potentially life threatening disease of his intestines called Microvillus Inclusion Disease (MID). This disease prevents Hunter from absorbing any nutrients through his small intestine making him completely dependent on Total Parenteral Nutrition (TPN). TPN is very hard on Hunter’s liver but the only other option is a small intestine transplant.At first it seemed like a very grim prognosis as the complications with transplant are many. But there is hope: an experimental treatment called Omegaven. Omegaven couples Omega 3 fatty acids with TPN which greatly reduces the risk of liver damage and may assist in its repair. Unfortunately, Omegaven is not currently covered by the Ontario Health Insurance Plan (OHIP) or independent insurance companies.This disease only affects one in five million people. Hunter is the twelfth known person suffering from this disorder in North America right now. Currently there is no cure for Microvillus Inclusion Disease. Hunter needs constant medical care and the cost can be overwhelming to a family. There is very little coverage for in home support for families battling MID; as this disease is rare it is not typically covered by OHIP. Although Hunter’s Omegaven is currently being paid for it is unknown how long it will remain covered and what challenges this little boy will face in the future. Because MID is such a rare disease more research is needed to find other treatment options that are not as detrimental to the health of those affected. Hopefully someday this research will lead to a cure. Hunter needs your help to stay home. With your support we hope to make this dream a reality. Please help – because every baby deserves to grow up.
Sunday, June 28, 2009
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