Finally!

Well he is finally out! What was supposed to only be 70 minutes turned into 3.5 hours!!!!!

GI said things looked okay but his stomach was raw and she still suspects EoE in addition to FPIES.  We will have to hold off on any new food trials as he may be reacting to something we are currently considering safe. We will have to wait for the results of the biopsies to find out if he has EoE and to see if we can determine why his labs are out of wack and he is so anemic.

Dentistry was considered a HUGE success. His malformed tooth was able to be saved. It was built up and capped to protect the area that came in without enamel. 

Ben is not very comfy but we hope to be going home soon. 

Thanks for the thoughts and prayers!

Surgery Day again...

Well here we go again. I must admit this is not something I ever feel prepared for. This time has really sucked. Ben had to stop all solids and go on clear liquids only for 24 hours. Upper and lower GI scopes and depending on how bad his malformed tooth actually is either a repair or removal.

I am sure in theory that sounds okay. With Ben's FPIES he cannot have ANY meat or we have a vomit to shock reaction. So no Chicken broth. No Jello (or anything else containing gelatin). So we were pretty limited in what we could give him. Water seemed to be the only thing he would take any of. He also had to stop his medications before surgery this time. That did not go well.

About an hour after arriving at the IWK his reflux was acting up and he was feeling pretty sick. He ended up throwing up twice before surgery. 

We have met with anesthesia, GI and dentistry and we are all ready to go...I think... 

WE ARE OUT OF HERE!!!

Ben finally decided to take a drink!!! Nurse Steve has managed to talk the ENT on call to discharge Ben home on morphine.

I am packed and ready to go! Fingers crossed we can stay HOME!!

Happy Labor Day from the IWK

Today I am spending Labor day in the IWK watching Despicable Me for the 10 Millionth time...I hope you are all doing something far more fun.

I WANT TO GO HOME!

We are still here....

So Ben decided he is not going to eat or drink anything. He is back on his IV and sadly the doctors are trying to find a balance of pain meds that will give the poor kid some relief. He is due to start some steroids tonight to help with the swelling so that should help some too.

On the plus side the DVD player in our room works and Despicable Me seems to be offering the best distraction so far.

Lets hope we can leave in the morning!!!

Surgery Day....

So today was surgery day. We stayed last night at Ronald MacDonald house to make things easier. Somehow this didn't make us feel any more prepared. Surgery days are harder now, not that they were ever easy. Ben now understands that something is up on these days even if he doesn't really understand what is going to happen.

He was such a brave boy and walked himself back to surgery with his giraffe named Bear and his doll named Baby.

The recovery room was a nightmare this time. Ben was angry and in pain and screamed for all he was worth. We spent much of an hour passing him back and forth between Ashley and myself and in the end he settled when Harry came in to watch cartoons with him.

We are settle up in 771 and hopefully Ben will continue to eat and drink so we can get out of here. So far so good, fingers crossed it continues!

Here we go....

Consults, Emergency Room and Stitches

After months of waiting we finally had a consult with the GI doctor about Ben's vomiting episodes. He is pretty sure it is something called FPIES and wants us to follow up with Dr. Kapur next week at Halifax allergy and asthma.

We weren't back 10 minutes and Ben tripped and fell over something in my dad's building and we landed in Emergency.

We waited forever! In the end the doctors decided to do stitches as opposed to glue since the cut was vertical. The doctors gave him sedation so he would stay still and he ended up having apnea episodes. So long story short we had respiratory in with us and he was put on oxygen.

Several hours and six stitches later we FINALLY got to come home.

Poor Bean can't catch a break. :(

#CleftAware

I'm not tired....

Benny Bean!

East Meck students end pal Brian Gibson’s lifelong ‘fight with his food’

This is a great article about a young man with Pierre Robin Sequence and arthrogryposis.


The link below will take you to the article (hopefully in a new window).

East Meck students end pal Brian Gibson’s lifelong ‘fight with his food’


Job well done I would say!

New Years Eve Nap

I still never get tired of seeing him sleep on his back!

Where do I start?

We have so much going on in the upcoming weeks I am not sure where to start really.  We are getting ready for Ben's next group of surgeries, and there is so much to do and so many appointments. Here is a quick recap of the last year:

• Ben born December 15, 2011 with Pierre Robin Sequence.
• Discharged from the NICU December 25, 2011
• Seen in the craniofacial clinic January 19, 2012. Diagnosis of failure to thrive and a severely compromised airway. Plan to readmit January 20, 2012 for NG tube and teaching.
• Readmitted January 20,2012 to PMU at the IWK. The severity of Ben's airway was really seen. The new plan was for a jaw distraction surgery once he had gained enough weight. We stayed on PMU for weeks and Ben had loads of tests prior to his surgery.
• Ben had his Bilateral mandibular osteogenisis surgery February 6 2012
• Ben was admitted to the PICU for 6 days after surgery until his swelling came down, he could be taken off the ventilator and his medications were in check.
• Ben was transferred to MSNU on February 11 2012.
• Ben developed a nasty post op infection that delayed discharge.
• We were finally discharged home February 21 2012.
• Ben battled the post op infection until the removal of the device April 11 2012. Still evidence of infection and placed on strong antibiotics.
• May 3 2012 Ben was readmitted to MSNU for investigation of the ongoing infection. Bone scan showed osteomyelitis. Scalp PICC line inserted. Home care and private nursing to assist me at home.
• Ping ponged back and forth from the IWK as Home care, private nurse and local hospital could not get blood return from the PICC line. Finally readmitted and stayed until antibiotics finished on June 9 2012.
• September follow up with ID seemed suggestive of the infection being cleared.
• Craniofacial clinic in July showed enough weight gain to consider palate repair. Follow up arranged for  October.
• August Ben's weight started to drop again. Took several weeks of playing with his reflux meds and fortified feeds to see any change.
• November visit to craniofacial and cleft palate clinic it was decided to book Ben for his palate surgery. 
• November 11 through to now Ben has been battling nasty fluid build up behind his eardrums. This has caused several infections. The left eardrum has perforated twice and the right eardrum has perforated once. We now see ENT weekly to have his ears suctioned and he is on long term antibiotic ear drops until tubes can be placed at the time of his palate repair.
• Hearing test December 13 2012 showed mild hearing loss in both ears. Worse on the left than the right. Fingers crossed the tube placement will help this.
• Plate surgery scheduled for January 21 2013.

So that takes us up to what is going on now. We will have loads of preadmission tests as well as regular clinics over the next 3 weeks. We are hopeful that Ashley can rearrange leave to be with us when Ben has his surgery. This brings me to my next point updates. I want to stress the following.

I will be posting on the blog as the main means of updates. We have so many family and friends and we want to thank you all for your love and support. We want to keep you all in the loop however it is hard to do so to each and everyone over the phone. We will once again be using the blog as our main means of updates. We will do our best to phone people as we can and we welcome anyone who wishes to call, email, text or whatever to do so. Please do not be offended if we do not get the chance to call. We will do our best to call as we can but depending on what else is going on it may not be easy. Also we have family that will be south, in the UK, on the other side of Canada or in the states. This means that sometimes the time difference works against us, especially when the medical staff need us at certain times for certain things. Please pass this blog along to those who may not know about it and still want updates. Please to feel free to check in here at anytime, I will also try to let you all know via facebook or twitter when an update is posted. Once again than you ALL for your thoughts, prayers, love and support. We appreciate each and everyone of you.

The link to the main page of the blog is:

http://pinkpointeshoes.blogspot.com/

feel free to share.

These next few weeks to the surgery will fly by. Lets hope the weather cooperates and that everything goes according to plan. Although if history has shown me anything it is that it  never does.

Arm Immobilizers

This is a post for all the Pierre Robin Sequence parents out there as well as craniofacial parents, what arm immobilizers did you like best post surgery??

We are looking at getting some and I am so torn between the Snuggle Wraps and the Pedi Wraps. I think I am leaning more towards the Pedi Wraps but I don't know!!

Help anyone????

Happy First Birthday Ben!

I cannot quite believe Ben is a year old! This has been a very hard year. It has had so many highs that were higher than high and lows that were lower than low. The poor little boy has over come so much in the last year, I sometimes wonder how he managed to get through it. As you can see in the pictures it hasn't been an easy road for him.

It seems we are always trading one issue for another. Appointments with one department start to slow down and others pick up and in some cases new departments all together become involved. My hope for him this year is to just have it all slow down. I just want him to have more home time and normal time than hospital time.

One year ago our lives changed. Little Ben gave us all a wake up call to what is really important and just how many things we all take for granted. As hard as it has been I wouldn't trade it for anything. He is a wonderful and very happy little boy and no matter what happens we will all figure it out together as we go along.

Fingers crossed this next year will be easier for him.


HAPPY BIRTHDAY BEN!!!! We love you!!!

Our Week In Review....

I'm about as impressed as Ben looks.

It really and truly has been one of "those" weeks. To be fair it has been more than a week but my patients and sanity have been tested none the less.

It all started with Victoria coming home with a NASTY cold. It lasted for about a week, but her throat was so sore she could hardly swallow. Harry was the next to get sick. He was worse than his sister with a high fever and refusing to eat or drink. After the cold seemed to start letting up the poor kid ended up with chicken pox! He (and I ) were miserable! He would bring me the tube of anti itch cream and say "mama fix it." Oh how I wish I could have.

Once Harry was well on the mend, Ben ended up with the cold. PRS and a cold is never a good mix. Even though Ben has had his jaw corrected he still gets pretty sick with any normal childhood thing. His cold and fever held on for days. He refused to eat, he wouldn't drink and even getting his medications in him were a challenge. He was having trouble breathing and went back to sleeping on his front for a few days.

As I am sure you are all aware Ben has struggled with his weight gain. We hit another plateau in the summer and really struggled to snap him out of it. Finally between August and the first of November he was back where he needed to be. This illness however had his weight drop back below what it was in the end of August. I am so frustrated! Despite syringe feeds and to ups with water and Pedialyte he struggles. I feel like I should be doing more but have no idea what.

He was miserable for days, the Saturday things went from bad to worse. He awoke screaming. He started holding his ear and we were off to the ER. Unfortunately it was too late, his ear drum had perforated. This is common in cleft and PRS kids due to the inability for fluid build up to drain. The doctor assured me that there was nothing more I could have done, but I still feel like dirt over it. The doctor told us that depending on where the perforation was it is most likely a good thing as it will make him more comfortable and give the antibiotics a chance to work. The bad news is he could not see the perforation. This means more follow up with Dr. Hong at the IWK, and keeping our fingers crossed it won't affect his long term hearing. Again frustrated.

Things are looking up and we are almost a week into the antibiotic. He still isn't himself but is doing better at least.

Lets hope this week is a better one!

Benny Bean!!

Don't I look great??

Clinic Day

Today was our marathon clinic day with Ben at the IWK. Overall the doctors are very pleased with how well Benjamin has been doing as of late.

Plastics/Cleft Palate team was our first stop. Ben has gained weight and grown well. The surgeon is happy to proceed with his palate closure. The wide u shaped cleft has narrowed and they feel that now is the time to act. Dr. Bezhuly is arranging a preadmission visit and scheduling the surgery for right away. The way he is talking I am thinking between now and by the end of January at the latest.

ENT was next. Dr. Hong was please with his ears. Both ears were free of fluid and no signs of infection. All of Ben's hearing screens have come back excellent and he has only had a few infections. Over all Dr. Hong thinks we will be able to avoid having tubes placed. As long as Ben's next hearing screen is clear, and we can avoid infections we should be okay. The plan is still to have a really good look in his ears when he is under anesthetic for his palate repair and decide then. Regardless he will clean out Ben's ears on the day of surgery. Fingers crossed.

Today we met Ben's pediatric dentist. It really wasn't anything more than an introduction and how the dentistry/orthodontic service will be involved with Ben in the years to come. His (2) teeth are fine, which we figured they would be. We were prepared about the issues with a cleft palate and teeth. Then with the complications of the jaw distraction surgery and his teeth. There will be involvement from a pediatric orthodontist prior to his third birthday. All issues will be seen to right away. Again the talk was around surgeries that will be coming up over the next decades until he reaches adulthood. In the end he will have the best set of teeth around I'd bet!

It was hard to be back in the hospital for that long. I have made it a point to make sure I am in and out when I go by myself. Today where Ash and I were there together and we had Harrison it really brought the past year. It has brought the reality of being back in the hospital with Ben again...and reliving it all over again. The fact we are going into Christmas doesn't help and just brings EVERYTHING back!

Here we go again....Sigh

Here we go again...

I am not even sure where to begin really. For the past two months things have been quiet. Ben seemed to be doing much better and we were able to take some small day trips for a little holiday. This week things slowly reverted to the tangled mess of appointments that our life had been a few month ago.

Tuesday I had calls from nearly every department at the IWK children's hospital. We are gearing up to be at that place every few days again. To be honest this was to be expected. The ramp up to the next surgeries was to start in the fall and with that comes all the appointments to prepare. What I did not expect was it to all come at once.

Yesterday we had a trip to see Dr. H in opthamology (please forgive me I cannot pronounce her name and at the moment I cannot think how to spell it either...her first name is Santa...that I can remember lol). Poor kid went through a long dawn out series of exams, eye drops and lights. His eyes had to be dilated. Things, for now, look normal. He will be seen back in two months ( around mid October) to be rechecked prior to surgery.

Ben will see the cleft palate team next month along with ENT, ID, plastics, and cardiology all at the IWK. He will be seen at least once a week by hearing and speech here in the valley.

Today Ben went to see Dr. Hilliard here in town. It was for a weight check and to investigate a new 'symptom' that has developed.

While Ben has surpassed all his normal motor milestones, his speech is (understandably) delayed. He does show good signs of hearing, which should mean hearing and speech will focus mostly on helping to develop appropriate and understandable speech post repair. His length has really caught up to where it should be, as has his head circumference. His weight however has decided to plateau yet again! I am getting so frustrated. At 8 1/2 months old he weights 7.15 Kg (15 pounds 12 ounces).

Part of the issue is that he is so active. He is burning more calories than before and hasn't greatly increased what he has taken in. The doctor isn't sure where to go from here really. We are going to tried fortified feeds at bedtime, through the night and first thing in the morning when the volume of what he is taking is down as he is sleeping longer.

Lets hope this works and it gets Benny Bean back on track. A problem with weight may cause a delay in the surgery as our plastics guy is pretty picky on how much he should gain prior to the palate surgery.