Hope For Hunter

Happy 2nd Birthday Hunter

2011-03-13T11:50:00.002-04:00

Happy 2nd birthday Hunter!!! Well it was yesterday March 12 but we were so busy I did not get a chance to post it! He had a great day with family and friends....he was exhausted by the end and so were we!! haahaha

His new line has been working great in his back/shoulder area....we are happy we made the decision to go back to the broviac and put it in that area...

I'll try and post some bday pics but I find they sometimes won't upload so I end up giving up on the waiting!!

New Central Line

2011-01-23T11:31:00.002-05:00

We are booked and ready for Hunter to get his new central line this week...in the last day or so we decided we are not going to get a port but a broviac like he had the first year of his life. Hunter is so active that we feel the port will stick out too much and likely get hit like last time which caused some of the damage. Also we are going to have it put in his back so this will hopefully avoid infections from stool. Hunter is a belly sleeper and wakes up every morning with a wet belly which we feel is the source of the 3 infections he has had in his life.

Since we made the decision and spoke to his doctor about it we feel really good about it. We know he can still swim with the broviac although its a bit more complex than having the port, we have to cover it and make sure water does not get under the dressing. We are not opposed to Hunter having a port when he is older and can understand that he has to be more careful with it but at his age he just can't comprehend that.

So Hunter will go to the hospital this Tuesday and is booked for the procedure on Wednesday...if all goes well he will be home after the procedure....the interesting part will be getting him used to laying on his belly during the dressing changes once a week! He learns so quickly that we don't foresee a huge issue....fingers crossed ;))

2010-12-15T16:31:00.002-05:00

We were able to bring Hunter home on Saturday....Chris and I had to go to Toronto Sunday and Monday so I have not had a chance to update....Hunter was so happy to be home Saturday he literally screamed with excitement when he saw his potty!! hahahaha....he is so funny....he was excited to see his own toys too......

We are running antibiotics at home until December 22....then in for blood work and eventually book an appointment to have a new port put in....we are considering having it put in his back but it really depends on where in the back it goes since it sticks out...we don't want him to be uncomfortable if he sits in a chair or anything....

One positive about this entire thing is that Hunter is wanting to eat....like all the time!!! He walks around saying "eat, eat, eat".....hahahaah...we have found that he loves cherries....grapes...any fruit really....when he wasn't getting his full nutrition at the hospital he had the chance to feel hungry which doesn't normally happen for him....he loves eggs too!!! So we scramble him some each morning and he eats a few....not a lot but at least he's putting food in his mouth and swallowing the small bits......a huge jump from a month ago.....

Things have been busy at home....finally got a Christmas tree and decorated it today....still need to shop since being in the hospital didn't allow that to happen.....if I don't post before Christmas I hope everyone has a Happy Holiday!!!!!

2010-12-09T19:17:00.002-05:00

Yesterday Hunter had his port taken out.....the surgeon said the infection on top of the port under the skin was "ugly"...there was no way the antibiotics would be able to kill the infection...his peripheral IV kept occluding so while he was out in surgery they removed it and put a new peripheral IV in his belly....sounds worse than it is but it laid flat with his body.....

Hunter went into recovery and at 1830hrs we were going to head back to his room...the floor where his room is called the recovery room and said we could not come back up because the room was not clean....this seemed odd since we were only out of the room for 2hrs! We found out that someone was being admitted into Hunter's room and he was being moved to a different room....the room Hunter was being moved to had someone in it still!! We were a little pissed to say the least since the poor kid just got out of surgery and wanted to sleep....we stayed in recovery until 2100hrs! Brutal.....once back on the floor and in a new room....the nurse came in and told us that the new IV could not have his TPN go through it because it was in his belly!!! WHAT!!!!! Hunter has probably lost almost 1lb since Monday....alot for his little body....and now we can't even run any TPN!!! We were pretty upset.....

When I got to the hospital this morning I spoke with Hunter's doctor....he said he was booking Hunter for a PIC line ( I guess it could be explained as being a temporary central line). He said if radiology could do it today we could go home on antibiotics tomorrow!!!! I was shocked...I thought we were in hospital for another couple of weeks. The way the last three weeks have gone we are not counting our chickens........

Hunter is booked for the PIC line tomorrow...he is put "on-call" starting at 1300hrs so they could call him anytime after that....then he can start getting his full nutrition again!!!

'Tis the season for re-admittance :(

2010-12-07T17:44:00.002-05:00

Yesterday morning Hunter pulled out his needle....he cried a bit and I took the dressing off and took the needle off his chest. The blister that was there looked red and worse so I brought him in to the day unit at the hospital. His doctor took a look at it and said we need to give that site a rest so we are going to admit him and put in a peripheral IV. AAhhhhhhhhh........not what I was expecting.....the vein specialist came in and was able to get a peripheral IV on the second try....she took blood work and a culture of the blister. They started putting a steroid spray on the blister to clear it up. And of course we are having a snow storm right now so that just makes this even better for family coming to visit!

I drove through the snow storm to get to the hospital this morning...Chris's mom stayed with Hunter last night.....I called Chris on my way in and told him not to come to the hospital until later because the roads were so bad.....Hunter's doctor came and told me that the culture they took of the blister was still growing something even though he was on the antibiotics....therefore we needed to pull his line since the infection was being fought at for almost three weeks and was still growing. Not the news we were hoping for. The doctor said we would need a surgical consult to take the port out...then a week of antibiotics....then put in a new port.....

The surgeon who fixed Hunter's prolapse last week may be the surgeon to take out the port so at least we know him....and he may be able to do it as soon as tomorrow.....thanks to the bad weather and all the people who have been cancelling their surgeries.....its not official yet but will keep you posted.....

Home is where the heart is....

2010-12-03T09:28:00.002-05:00

Yesterday morning we were told we may be able to head home after some blood work in the evening. The surgeon's came up and were happy with Hunter's progress after surgery....you would never have known he had surgery the day before...he was running around and having a great time with his little girlfriends up on the floor!

Hunter's port did not get any blood return Thursday morning so they took out the needle....they found there were two blisters under the needle....great.....they cleaned it up and put a longer needle in so it wouldn't be pressing on the blisters....they are not concerned about it but just want us to keep it clean etc and hopefully it won't progress to anything more.....

All of the docs came and checked out Hunter and they all agreed we could bring him home...so late last night Chris brought him home.....he was sleeping when Chris carried him through the door and he passed Hunter to me when we got to his bedroom...Hunter opened his eyes...looked around...and put his head back down and fell asleep.....

It was the best sleep I've had in several days........

2010-12-01T20:16:00.002-05:00

Hunter was called for surgery at 1315hrs....I was able to gown up and go into the OR with him until he was put out. Hunter was out by 1350hrs and we went to grab a quick bit to eat before heading to the waiting room. We don't like to go too far just in case. I think we realized today just how stressed we were about the entire surgery. After lunch we went to the waiting room knowing Hunter would not likely be out of surgery until 1600hrs. Well at 1601hrs we started to worry more. That's when the "what ifs" start running rampant in your head! The surgeon came out to talk with us at 1615hrs and said everything went well. He told us Hunter has a "redundant" bowel which means he has excess bowel which is seen in cases like Hunter's. The surgeon feels the surgery was successful but advised us that the "redundant" bowel could prolapse out of the fixed portion of bowel. Likely it won't but it could.....so fingers crossed on that one.

We were finally able to see Hunter in recovery and he was groggy and generally unhappy....they gave him some gravol and he was out like a light sleeping in daddy's arms....Hunter has four little incisions on his belly so we will know better tomorrow or Friday when we can bring him home.

Surgery tomorrow

2010-11-30T19:39:00.002-05:00

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.

2010-11-27T21:08:00.003-05:00

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

2010-11-24T10:13:00.002-05:00

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

2010-11-22T11:01:00.002-05:00

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!

2010-10-01T14:37:00.003-04:00

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

2010-09-11T13:40:00.003-04:00

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....

One shot mommy!

2010-07-13T12:51:00.001-04:00

That was my nick name yesterday at the hospital....after three weeks of being trained to put the port needle into Hunter I finally got it in properly on the first try!! I was so proud of myself and happy that I didn't need to poke the little man more than necessary.....his weight was good at 21lbs 10oz.....he even smiled at Dr Atkison instead of the usual crying!! haahahah...all in all a good appointment.

No other changes to note....the citrate medication for his kidney's seem to be working and he is his usual happy self. I took him to his first family reunion the other day and although he started out a little grumpy (likely from the heat), he ended up having a great day...I think everyone was happy to finally meet the little guy they have heard so much about over the past year....his little cousins were interested in understanding how his nutrition worked and wanted to see his TPN bag....

Until next time......

Finally a good outcome

2010-06-17T12:26:00.000-04:00

The surgery yesterday went well....Hunter was pretty fired up afterward! Once they tried the line it didn't work....nothing can be done the easy way for our little guy. The radiologist was paged and came back in last night to put in a new needle....it flushed fine but after he left it was not working again! The nurse tried a few tricks and it would work if she pushed the port to one side so we thought the it seemed obvious that the needle was not in the correct place. They tried putting TPA in the line but of course that didn't help. Hunter was exhausted and it took us a long time to get him settled. Poor little man had dark circles and bags under his eyes, he looked terrible. He finally went out for the night around 2300hrs and slept all night.

This morning the vein specialist came in (she has gotten to know Hunter quit well over the past year), she reinserted the needle and said it was out of place. It flushed well and they tried it out for an hour before letting us take Hunter home. I think Hunter was asleep before we left the hospital parking lot and we transferred him to his bed when we got home. We need to give him a saline bolus when he wakes up since he was shorted some fluid yesterday and likely each day since he's been there.

We were so excited to get a port for Hunter but it hasn't started out very well that's for sure...hopefully we will see the good in having it once we get over the learning phase.

Thanks to Janet for taking the time to get the IV in Hunter originally and for fixing his port this morning!! We really appreciate it......

Good News

2010-06-15T20:31:00.000-04:00

Hunter is booked for surgery tomorrow at 1430hrs....hopefully all goes well and we can have hime home sometime on Thursday.

Line Break #4

2010-06-14T20:00:00.000-04:00

It seems the only time I have to update Hunter's blog is when he is in the hospital! But first I need to update the last couple of months or so to catch you up to speed.

We have been dealing with a kidney issue which I think I posted about before...its been so long I really can't remember. Anyways, we have been going to appointments almost weekly and bringing urine samples which is always fun attempting to get. I have to say we are becoming quite good at it...it does help that we document all of Hunter's input and output and urine/stool so we pretty much know when he will go each day...the concern for the kidneys is the amount of calcification that has occurred which has damaged Hunter's kidneys. We were told his "urine is precipitating calcium". What does that mean?!! Exactly...I really don't understand it all but basically urine is supposed to grab hold of the calcium and be expelled. Hunter's urine is not grabbing hold and taking the calcium out of his body so his kidney's are working over time and can't keep up. At this point we don't know if the kidney's will repair themselves or not. We started Hunter on a new oral medication which we weren't sure would work since taking things orally doesn't always absorb properly into his system. Well it seems to be working.....thankfully and we will continue with our regular appointments and go again in about 6 months for another ultrasound to see if there is any visible change.

Which brings us up to speed for today....we went to his regular appointment and his TPN ran fine all morning. When we took him off at the appointment the nurse had difficulty getting blood withdrawal from the line. It eventually came but not like it should, then she couldn't flush the line, it was completely blocked. I suggested changing the cap hoping it was simply an issue with it....its wasn't....they wanted to use TPA in the line (the liquid draino type stuff) which they had put in a couple of weeks ago to clear a blockage...nothing was going in the line and it eventually popped. So we were admitted on the spot and his doctor came in and told us he recommended we put in a new line...the long awaited port-a-cath! Like I've said before...you don't want to put your child into surgery but I think it will really improve Hunter's life and shorten the hospital stays since we've been in the hospital due to a line break 4 times since Easter.... The port is under his skin so when we disconnect him he can swim and bath without worrying about getting the site wet.

We have also been in "fights" with our insurance company and one of the companies we get Hunter's supplies from....I don't understand how you can require the same supplies every week for months at a time and the company be so inconsistant in sending the proper supplies...I call them pretty much weekly to get it straightened out...its brutal! And to top it all off our own insurance company has not paid for anything required for Hunter since he's been home....they are useless....

We have started getting these "coily" lines similar to a telephone cord which we attach to Hunter's current line...this give him an extra 4-5 feet of freedom from being glued to our side when he is hooked up to his TPN...its been a god send......

Hunter is growing so much and walking everywhere...sometimes making attempts at runs but that doesn't always work out well!! hhaahah......Hunter was 21lbs 7oz today.....

In and Out

2010-05-11T10:53:00.000-04:00

Sunday morning at 5am Hunter's line decided to break again....how is it we went 1 year without a break and now this is the third in a month! We were 1 1/2hrs away from the hospital so I clamped it off (as we would anyways) and made the early drive. Thanks dad for making the trip with me....Hunter slept the entire way which is good.

Due to the early hour Hunter's line was repaired first thing around 9am....we were kind of hoping they would put a port in, not that we want him to endure a surgery but the port has its benefits....anyways...the line was repaired and while he was still drugged they tried to get an IV in .......they couldn't after way too many pokes! So we tried to flush the line after 8 hours instead of the standard 24hrs. It flushed and they were able to run a low rate of fluids....he was tired because of one idiot nurse waking him at 3am for no good reason...and he was hungry....Hunter ate a bowl of cereal once we got him home and kept it down...no vomiting...no gagging....hhmmmm

He is doing great right now....had a good nights sleep and a full day of TPN so his energy level is back...now we just wait and see how long this line lasts!!

Long awaited update

2010-04-21T20:22:00.000-04:00

Our internet has been down for the past 3 weeks so I haven't been able to post an update. We did make it home with Hunter's line repaired. Unfortunately, after 2 days at home his line blew...literally....we ended up back in the hospital wondering if his line could be repaired a second time. Hunter did lose just over a pound while he was in the hospital because he was off his TPN. It was repaired and we waited the 24hrs to see if it would flush. While we waited we discussed our options if the line needed replacement. We decided we would go with a port-a-cath which is under the skin and accessed by a needle. The nice thing is that when Hunter is disconnected he can swim or bathe without worrying about getting his line wet. We were lucky and his line flushed and he didn't have to have it replaced. We went home with a feeling of contentment that we knew (for once) what would happen in the future.

Our contentment only lasted about 2 days because we got the resutls from an ultrasound of Hunter's kidney's that we had while we were in hospital. It had been scheduled for 3-4 months and we just happened to be in hospital when the appointment came up. We went for the results and they weren't good. Hunter has calcification on his kidney's which could cause stones or worse. The doctor said alot more but didn't "dumb it down" enough for me to explain. We are waiting for the results of the blood and urine they took which we won't get until the end of May. The results will tell us what is causing the calcification and hopefully it can be corrected...but there is a chance that the damage done is irreversible. So...we wait....

It feels like Hunter has gained back his weight and he is getting a mouth full of teeth all at the same time! He still crawls most of the time because he's much faster at it but he does make attempts at walking throughout the day.

Hunter's Line

2010-04-04T20:16:00.000-04:00

After 1 year and 2 days...Hunter finally broke his line! On Saturday he stepped on his line and left it behind....we've been at the hospital since Saturday night. They were able to repair the line and now we wait for 24hrs to make sure it works properly. As always...Hunter's doctor is amazing...we were waiting for general surgery to come and fix it but they said they'd be back in 1/2 hour and never did come back so his "real" doctor came back from his Sunday dinner and repaired it....I love that guy!!

Hunter has been irritable but great as always...he's been able to see his former "Dream Team" nurses and they were excited to see how well he's doing. Tomorrow they will take blood cultures and do an xray to make sure all is well with the line...fingers crossed....and hopefully we'll be home at this time tomorrow!

More Milestones!

2010-03-31T15:06:00.000-04:00

Hunter took his first couple of steps yesterday..and he seems to want to keep the momentum going today!!!! He doesn't really seem to care that he's doing it.....he looks at us like "what's the big deal"! I can't wait to see him full out walking...it seems that all of my friends kids who walk have a distinct character walk..for example...one little guy does the "Bill Cosby" and the other does "Ed Grimley"...it's hilarious...I can't wait to see what Hunter's character will be!!

Hunter is up to 19lbs 10oz and his blood work is back to being perfect...we are going to try him with 7 hours off of his TPN tomorrow...a nurse will come and check his blood sugar level when we lock him off and then again just before hooking him back up 7 hours later to see if his body can sustain the additional hour. I can't wait since he naps through a good 2-3hrs of his "off" time already.

Going to be beautiful out the next few days....

Hunter's First Birthday!!

2010-03-16T09:48:00.000-04:00

Hunter's first birthday was March 12! Had a party and he was great...wasn't too sure about the cake though....I wanted him to get right into the cake and make a mess but he didn't...easier clean up for us!

We started the IV metoclopramide and it seems to be working. His vomiting is reduced but he seems to have a seasonal allergy or something because he is sneezing a bit and coughing...when he does vomit it is very mucousy like he has a cold...but as always...he is super happy! The blood work for his stomach salts etc came back normal although his lytes were out for about 2 weeks. They are back to normal this week thankfully and he has put on some weight...he's up to 19lbs 3oz!!!!

Hunter is still not walking but he's so close...if he could get over the fear of standing on his own! He is getting more brave but not quite there yet...more teeth coming in but nothing right out yet....

We were given some suggestions for his oral aversion and he is doing much better with it...they said his aversion is very minimal, which we knew, but we want him to progress so we were happy with the consultation.

The weather is beautiful so we are getting outside....

Same Old Same Old

2010-02-25T10:51:00.000-05:00

So the accupuncture didn't really work...it kind of seemed like it might because Hunter had a good couple of nights when we started but after 2-3 weeks things stayed the same.

We met with another branch of Victoria Hospital last week and they have many different types of drugs for us to try to help with the vomiting....of course if any of them work we still don't know what causes the vomiting but at least Hunter will be feeling better. We are trying oral metoclopramide right now...sometimes it seems like its working, other times not...so hard to know if he is absorbing any of it...we are going to start the IV metoclopramide on Monday so that will be the deciding factor I guess....they've also done another bunch of blood work tests to see if his stomach salts are low and if his pancreas is inflammed which could cause the vomiting...no word yet on those results.

Hunter continues to meet his milestones...he can stand on his own but once he realizes he's doing it he drops to his knees...you can see the "oh crap, I'm doing this on my own" look on his face! He has his fifth tooth and enjoys showing all his teeth to anyone who asks him to! He's such a little ham....he was starting to get an oral aversion and would start to gag if we put his toothbrush or food into his mouth...we've been working with it for the last little while and he seems to be doing much better...eating again and letting us brush his 5 little teeth....

Meeting of the Minds

2010-01-24T11:59:00.000-05:00

Hunter's doctors met and discussed the options for the vomiting....they are looking at a different IV medication, which of course is not covered...its not as crazy expensive as the omegaven was going to be but we are still thankful for the fundraiser since these unexpected expenses were a huge stressor prior to the event. We are going to try the medication for a one week trial to see if it helps. If that doesn't work than they discussed putting a G tube in Hunter's belly to drain the excess bile. Of course the final option if all else fails is a transplant....we've already said no to that....at this point Hunter is a candidate for transplant due to the 2 serious infections he had last year....we've been wrapping Hunter's line and (knock on wood) so far so good with not having an infection!! We really believe the stool was seeping in to the line from the outside.

Hunter had his first acupuncture treatment yesterday...the acupuncturist said it doesn't work for everyone but infants often see results more quickly than adults...we are going to do 6 treatments and see what happens....Hunter did sleep well after the treatment and slept for a solid 7 hours last night before waking to vomit at 3am...but then his usual...he was up every hour or 2 to vomit but slept solid from 6am until 8:15am which was nice for me!!!

Test Findings

2010-01-10T10:30:00.000-05:00

Thursday test day was a long day but it did give us some answers..Hunter drank the dye and kept it down for a little while...he threw up during the x-ray which allowed them to see that his esophagus went into a spasm which triggered his stomach and he vomited...some liquid also went out the proper way it should at the same time so there is no blockage...it seems his nerves are over reacting due to lack of use....Hunter also had some blood work because of calcium levels and an ECG...his calcium levels are back to normal so hopefully they remain that way...the ECG is a precaution to one of the medications he may be started on...Hunter's doctors are going to meet on Wednesday to discuss options.

We are attempting to feed Hunter orally 3 times a day which we were doing prior to all this vomiting starting....we might also try some acupuncture to settle the nerves....you never know what might help..

Hunter had a better night last night...only up 2 times with vomiting....maybe a new trend?

Yet Another Stuggle

2010-01-06T09:21:00.000-05:00

We had high hopes for the new medication but it doesn't seem to have helped....the vomiting was better for the first day or two but its like Hunter's body became immune to it and he was back to vomiting almost every hour at night.....the grandparents have been great with coming up and letting us sleep at night while they get up with Hunter...we are scheduled for a Barium (sp?) test tomorrow morning where Hunter has to swallow some dye and they see what it does...hopefully he can keep it down...

Another issue that has been coming up is Hunter's calcium levels in his blood work...the levels are high so after the dye test tomorrow they will be doing more blood work to find out a cause...Hunter's doctor thinks it could be nephrocalcinosis...kind of like kidney stones but not I guess...he says its manageable and not to worry too much...easier said than done since we worry about everything as any parent would....

We will keep you posted with the outcome....

On a positive note we had a great Christmas so I'm adding some photos....

Merry Christmas

2009-12-24T11:21:00.001-05:00

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

2009-12-01T11:10:00.000-05:00

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...

2009-11-04T14:42:00.000-05:00

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

2009-10-14T12:11:00.001-04:00

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....

2009-09-29T13:59:00.001-04:00

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

2009-09-23T19:14:00.000-04:00

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

2009-09-19T11:25:00.000-04:00

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

2009-09-15T18:08:00.001-04:00

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

2009-09-02T10:53:00.000-04:00

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

2009-08-21T15:11:00.000-04:00

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...

2009-08-20T13:18:00.000-04:00

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...

2009-07-30T08:22:00.001-04:00

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....

2009-07-26T07:43:00.000-04:00

.....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?

2009-07-24T08:34:00.001-04:00

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

2009-07-17T19:58:00.000-04:00

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....

2009-07-11T11:27:00.000-04:00

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

2009-06-30T18:54:00.000-04:00

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

2009-06-28T19:41:00.000-04:00

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.

2009-06-13T09:33:00.000-04:00

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....

2009-06-09T10:59:00.000-04:00

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.

2009-06-02T10:10:00.003-04:00

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"!

2009-05-25T18:45:00.000-04:00

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.....

2009-05-13T19:15:00.000-04:00

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.

2009-05-11T18:19:00.000-04:00

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!