Merry Christmas

Well Christmas is upon us and I am feeling very lucky and grateful to have Hunter at home with us! I can't remember the last time I was this excited about Christmas....I guess having the best gift in the world makes all the difference.....

Hunter's weight is up to 16lbs 12oz and his 4th tooth came in...another one on top...Hunter is crawling faster and very determined to walk! The crawling and walking is very interesting with his line....we are trying to figure out how best to follow him around with it without tiring us out!!! Chris thinks we should get a big remote control car, strap the bag to it and just have the car follow him....probably good in theory but I'm not too sure how that would work out...I can see Hunter turning and chasing the car!!!! hahahahaah...what a sight it would be!

We started Hunter on a new medication that goes directly into his central line. Its supposed to help with the vomiting....its only been one day so we are not getting our hopes up but he only threw up once over night last night and didn't wake up until 7:30am....what a change from the last 3 months of being up 3-5 times a night with him and then up for the day at 6am.....we almost feel rested!!!

I hope everyone has a Merry Christmas and Happy Holiday....may good fortune shine down on everyone as it has us....we feel we are the luckiest parents out there!

Knock on Wood

We've been knocking on wood alot these days....it seems everytime we say how great Hunter is doing something not so good happens (knock on wood). The longest Hunter has gone without an infection is just over the 2 month mark....that is about where we are right now from his last hospital stay.

He is hilarious right now....one of his top teeth came in and he is talking constantly...mostly likes to say "dadadaddadada". He is such a happy little guy. Hunter likes to walk along the couch but often forgets he can't really walk yet and turns himself to walk without supporting himself....and down he goes....with us to catch him of course!

Medically he is doing well...still vomiting sometimes but it seems to be less than before...some days better than others.......Hunter no longer has to go to a weekly blood work appointment...we are going every other week so this is the first week we haven't gone....I'm curious to see what his weight will be next week because I swear his cheeks got bigger over night!!

We continue to try and give oral feeds....it was funny because Chris asked me why I buy the crappy vegetables and not the fruit for Hunter...I told him that you are supposed to give them the veggies first otherwise they won't eat them because the fruit tastes better to them...Chris replied..."it's not like he's getting anything nutritionally from it, it's just for pleasure so buy him the good stuff!" hahahahaha....I guess he's right.....so we started giving Hunter the fruits...started with peaches...he loved it....then some banana...he loved it....will try pears today!

Like I said...all seems to be going well....so everyone reading...KNOCK ON WOOD!!!!

It continues...

The vomiting has continued and seems to get better than worse etc.....we were documenting every vomit to see if we could see some sort of pattern but there really isn't one...Hunter's doctor suggested we stop documenting it since we are driving ourselves crazy...we have had a stressful couple of weeks...not that much has really changed but there is another child (that we don't even know) who is not doing so well and that makes us think of Hunter's future. Of course we dont' automatically think of all the good things for his future...we think of the things we may have to face that no one really wants to think about...we are learning to laugh at ourselves and enjoy Hunter whether there is vomiting, stooling or whatever!

At Hunter's monday appointment he gained a little weight, he's up to 15lbs, 7oz.....they did an x-ray and ultrasound to see if they could find a source of the vomiting...everything looked great...which is good but then where do we go from here? His doctors have a theory that the antibiotics from his last infection killed both the good and the bad bacteria that grows in the gut...now there is an imbalance and it makes his gut unhappy....this can be perpetuated by a lack of eating...we had to stop the oral feeds when we were in the hospital so this seems to make logical sense....I love logic but Hunter's doctor said our bodies are not always logical! ahahah of course they're not....they said it could take months for Hunter's bacteria levels to get back to normal or they may not at all.

Hunter's top teeth look like they are going to pop through any day now and he is not so much crawling as pulling, rolling everywhere! He is talking non stop as well...very cute....Chris has heard Hunter say mamamamamam a few times but I have yet to hear it! Maybe Chris is just trying to make me feel better!! hahahaah

I've posted some halloween/recent pics of Hunter....

Sorry for the delay

It's been awhile since my last post...it always takes us a bit of time to get back into the groove of things....and to gain our comfort level back after an infection.

Hunter has been vomiting since his infection. We were told this infection sort of pushed him over the edge and to be patient since it will likely take him longer to get back to himself...unfortunately we have not been giving him his oral feeds due to the vomiting so we feel he is losing out on keeping those skills. He does seem to be getting better though...personality wise he is back to himself...he only vomits maybe 1-3 times per day and we started giving him one feed per day to get him back into it. He doesn't seem to have forgotten too much...

The rubber pants were not helpful...we have moved on to adult incontinence pads in his diaper...the O'Connor's gave us this idea and it does seem to help. He still has some leaks but its much less than before...we have started wrapping his line at bedtime with gauze and plastic wrap...haven't had any poop touch his line since the infection so it will be interesting to see if this prevents the infections or if they are coming from his "leaky gut". We also started putting 70% ethanol into his line 3 times per week to kill any possible infections growing in the line. We have had some difficulty extracting it so its unknown if his line is moving inside his vein or if there is a clot somewhere in the line...its more likely that it's moving since the heparin comes out fine on all the other days and we can flush saline through it without issue...

Since our last post Hunter has started sitting on his own and during the Thanksgiving weekend his bottom two teeth came through!! He's getting to be such a big boy.....and he's so good...just a happy kid all the time....well...ok...most of the time!! haahah

I've posted some pics of Hunter....I think he's undecided on whether to walk or crawl first...maybe he'll just roll through his first year!!

Finally....

Hunter is finally home....the only nice thing about being at the hospital is the people we meet...there always families who have come in that we can share our experience with and hopefully help them on their journey will in patient...

Hunter is home and napping without interuption.....accept for our dog barking which he apparently has to get used to again!

We will be starting ethanol locks 3 times a week which in theory will help prevent line infections...we also bought some rubber pants to see if that helps with leaking throughout the night....we'll try anything if it will help with these potentially fatal infections...

Hope for Hunter

Please enjoy the video we made for the Hope for Hunter fundraiser which was held on Saturday, September 19, 2009. It was alot of fun even though Hunter could not make it to his own party. Thanks to everyone involved in its success.....

Hunter's Infection

Hunter is doing much better...thank you for all of the support and well wishes...

On Monday morning Hunter had a bit of a temp and he was lethargic so we brought him into emerg. We had given him some tylenol so his temp was ok when we got there...he seemed fine so they were going to send us home. Since he has his normal blood work on Mondays, they took blood from his line and changed his dressing. Hunter's line was flushed and within minutes he began to make a steady, hard grunting noise and was crying...obviously not normal. We got the nurse and she took his temp...it had shot up to 38.9 celsius (102.02 fahrenheit). Hunter's feet started to swell and they turned purple and blue. We pointed this out to the doctor and he said Hunter was clenching his feet....which he was not! Then his hands turned purple and blue...we again pointed this out...with the same response...Hunter's hands were wide open! The nurses tried for 45 minutes to get an IV in but couldn't so they got the expert down but since they had blown all of the sites she had to put the IV in his head.....later Hunter's doctor said he really didn't need an IV since he has his broviac but I don't think they wanted to use it for fear of causing another reaction....needless to say Hunter had to endure that which is very scary and helpless for us to watch.

Antibiotics were started and Hunter stabilized. He had a toxic reaction which gave him a high temp and high respiratory rate with a low blood pressure. This can lead to toxic shock which can be fatal. Thankfully Hunter recovered from the episode but they watched him very closely any time they did anything with his line. We are very glad this did not happen at home....

Hunter grew 2 bugs similar to the infection he had 2 months ago. They are different but still from a "leaky" gutt. They do not have plans to pull his line at this point because it is a different infection.

Hunter is becoming more himself but he is very tired from the antibiotics. We will likely be in hospital for at least 2 weeks.

Hunter admitted with another infection

Hunter has been admitted back into hospital as of Monday...he will likely be there on antibiotics for the next two weeks...will post more info when we've had a chance to process it all...

Challenging Hunter's Gut

We continue to challenge Hunter's gut....we have started giving him rice cereal once a day along with his bottle which we give him once per day. We give both of these during the time he is off his TPN...he's off 6 hours a day....he does seem to get hungry during this time and the small amount of oral food he is given has not made him stool any more than usual...and he seems to like the food!! I'd like to start pureeing some food and see what happens...

Hunter has moved on from thumb sucking to index finger and middle finger sucking...he's so funny...he has also decided to start rolling over at every opportunity during the night! He's been rolling over since he was 7 weeks old but at that time it was just something he did every once in awhile likely unvoluntarily...but now he just rolls over all the time...the thing with him doing it during the night is he realizes he would rather be on his belly but won't roll himself back over...which keeps us up...and he rolls into his line and gets a little tangled...so we have to keep a close watch on him....

All in all Hunter is doing great...he weighs 13lbs 12oz!!! What happened to my little 6 pounder!!! He is filling out in his face and legs...what a difference from when he was so sick....he is truely amazing!

The final plans for the fundraiser are coming together....we have some great door prizes and silent auction prizes...it's going to be a fun day....hope to see you there....

A Milestone Moment

After 123 days on Omegaven....Hunter's billi levels have returned to normal!!! His dietician says his liver is still not completely "happy" since his two other liver enzyme levels are still elevated...which is common...but what a day to celebrate!

His hemoglobin has gone up on its own from 91 to 97...fantastic!!!! It seems the iron supplement in his TPN has done its job. So nice to not have to worry about him having yet another blood infusion due to his hemoglobin levels..

Hunter is doing great...he is so active now and is starting to grab at everything!!! Including his broviac if he doesn't have a shirt on....I assume this is the mild side of what is to come when he starts crawling...walking...etc...etc....

Newspaper Article...

Hi everyone - Erin here. I'm sure by now a lot of you have seen the article that was in the London Free Press last week. I want to thank the paper for helping us get the word out about MID and Hunter's story. It's been brought to our attention that there have been some letters to the editor urging people to write to their MPs to say that Hunter's Omegaven should be covered. The original article is accurate in saying that OHIP does not cover Omegaven and we would still urge people to petition the government for this coverage. Hunter is currently getting his Omegaven covered by ODB (as posted in the blog written in May when coverage commenced) but there are special circumstances: Omegaven is only covered when it is mixed with a protein (such as TPN). Currently there is only one pharmaceutical company in Ontario that does this. It is unknown how long this coverage will last and unfortunately there are still a lot of families out there that are not getting Omegaven covered. Although Hunter is currently getting the Omegaven there are still numerous expenses that this family is facing. Hunter needs constant care and the cost of in home support is high and is not covered. No one knows what challenges this little boy will face in the future and we hope to continue to raise support and awareness for this family and this disease. Thanks to all those out there that have supported this cause.

Please Join Us...

Please join us for a charity BBQ to support Hunter...

BBQ is at Shaw's Ice Cream,
6598 Sunset Rd, Central Elgin
Sat-Mon...11am-8pm

The weather should be nice so stop in on your way to or from the beach!!

The Price of Piece of Mind....

.....Is two days in the hospital......Hunter's 48hr cultures came back negatvie....thank God....it will take some time but eventually we will be able to distinguish between Hunter's "infectious" sounds as opposed to his non-infectious sounds.....for example he was making a grunting noise that many babies make at his age...but with Hunter...this can also be a sign of infection so we need to look at the frequency/consistency of his grunting etc..... we came home Saturday at 6pm.

As always Hunter's doctors and the hospital staff have been great, reasssuring us that it's better to be safe than sorry when it comes to his health...we also got to see the doctor who originally went in the ambulance with Hunter when he was rushed from St. Thomas to London when all of this began....it was great to see him since he was a huge part of saving Hunter's life....I wanted to express to him how much it meant to us to have a dedicated doctor taking care of our little man (even though its his job)......but there are really no words to express the gratitude we feel towards all of the doctors and nursing staff who have been involved in Hunter's care......what they do for families every day should not be taken for granted...

Parents over-reacting?

Over the last couple of days Hunter has been "grunting" and vomitting. The vomitting seemed to go hand in hand with him having his small bottle each day. The last time Hunter had his infection we were told the "grunting" is a sign of infection for him. It didn't seem to be as bad as the previous time but we started to get ourselves worked up about it to the point where I felt sick to my stomache. Could have been me thinking about the worst case scenario of what it could mean for Hunter if he had the same infection or it could have been me thinking about going back to the hospital! Either way, we decided to bring him in......I cried the whole way to the hospital of course. He has been admitted for 2 days as a precaution. His blood work last night showed his white blood cell count to be normal which is encouraging. He could still have an infection but we'll know for sure within the next 48hrs when the cultures come back.

Once we were at the hospital I felt much better...whether it was knowing we would know for sure if he had anything or the comfort of his primary workers being there when we got there...I don't know....

Follow up appointment

Hunter had his follow up appointment today. We had to wait 40 minutes after our scheduled start time for them to even start the appointment...not great for a fussy 4 month old....fortunately Hunter's white blood cell count was normal meaning it would be unlikely for his cultures to grow over the next 48hrs....his hemoglobin is normal as well meaning the iron they put into his TPN is working.

Dr A thought Hunter looked great! We think he's started teething since we went through 2 days of what felt like non stop crying. Nothing breaking the gum line but you can see the bumps!

Home at Last....Again....

We made the trip home with Hunter this morning....it is great to have him back here. Hunter's doctors are looking at starting something new to help alleviate line infections. They put alcohol in the line and then extract it to clean it....this has proven to reduce/eliminate line infections. It'll be a couple of weeks before we start this since Hunter still has to get the all clear in the next two weeks that his original infection hasen't grown back.

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"!

Well its been a long week...the doctor's discussed Hunter's rectal prolapse and a liver biopsy. A rectal prolapse occurs because the muscles and ligaments that hold the rectum in place are weak. It can occur in elderly people, people with long term constipation, long term diarrhea, pregnancy, childbirth etc. They are not concerned about the prolapse which apparently many babies have and will outgrow. Hunter's prolapse is very mild.

Hunter's doctors discussed trying two methods to help reduce his liver inflammation. They also discussed taking a biopsy of his liver in the next couple of weeks if his billi levels continue to rise. Another surgery is not something we were looking forward to.

Luckily for Hunter, his blood work yesterday came back with great results. We have been waiting for his billi levels to come down and they finally did!!! They dropped approximatley 25 points. His skin and eyes do not look as yellow and his hemoglobin level went up ( so no blood infusion this week)! He's been gaining weight this week as well...he's almost 9 pounds!!!

Hunter is still off his TPN 5 hours a day and saline is run through the line while he is off to keep the vein from collapsing. Today they "hep locked" the line meaning he was "hands free" for 5 hours....it was awesome to be able to walk with him without having to drag an IV pole behind him!

We've also been told we can bring him home June 1 and the omegaven will be paid for!! The omegaven is the biggest expense we will have when he comes home so that is a huge relief. There are still other medical costs to expect and he does not qualify for nursing care.

A HUGE thank you to Erin McMullen and Dan Boyko who ran the Ottawa marathon in their blues and boots to raise awareness for Microvillus Inclusion Disease. You guys are awesome...I hope you're feet aren't hurting too much today!!!

Please feel free to leave a message of encouragement to Hunter and his parents in the comments area. Thank you to everyone for showing their support, we'll keep you updated.....

Hunter's weight continues to go up and down. His dietitian would like him to gain about 30 grams per day but he is only averaging about 5. He'll go up 60 grams then drop 30 or more etc. We have started challenging Hunter's gut by giving him 10cc of Medium chain triglycerides (MCTs) mixed with 10cc of expressed breast milk. The MCT is an oil that is not absorbed through the small intestine and therefore something he may be able to tolerate. The thought is that if he can take in even a small amount of nutrients through his stomach, his liver will be less inflamed.

We were supposed to be trained this week on the pumps Hunter will need when he comes home but the red tape/contractual road block has extended it for a couple of weeks. Hunter will be the first person to go home on Omegaven from London Children's Hospital so some things need to be worked out. He is also the first infant in his county to be on TPN so again there are some things to be worked out. He had a potential discharge date of May 20th but it has been extended to the end of May-early June. We'll keep our fingers crossed.

The TPN began to affect Hunter's liver within the first couple weeks of use. He has weekly blood work to ensure all of his levels are in the optimal range but his billirubin levels continued to rise. Raised billirubin levels are a sign of liver damage and cause the skin and eyes to have a yellow tinge, like a baby with jaundice. This is where the Omegaven comes in....in the last three years it has been used experimentally to effectively bring down the billi's. On April 7, 2009, Hunter was started on Omegaven. Hunter's billi's have continued to rise, which is expected for the first 2-3 months, after which they should start to decline to a more normal range.

Yesterday's blood work showed an increase in Hunter's billi's, as well as an increase in two other levels related to the liver meaning his liver is inflamed. We are hoping his levels will start to drop within the next month or so.

On a postivie note, Hunter's hemoglobin and iron levels have stabilized which means he won't have to have blood infused (he has had this done twice due to his levels dropping). On a none medical related note....Hunter rolled over for the first time this week!! He didn't seem as excited as we were!