Home!!!

We have finally made it home!

Ben has been discharged on his pain medications and antibiotics as well as his topical treatments for wound care.

It doesn't seem real to be honest...this has been such a long hard month (well over a month) that I can't quite imagine what it's like to be home.

We have follow up appointments in the valley next week. Monday for Dr. Cogswell (weight check, wound check and immunizations) then later in the week with the pediatrician.

March 9th we are back at the IWK to see Dr. Hong and start preparing for round two of surgery. I am dreading it...we barely made it through this!

However for now we get to go home!

31 Days....

Today is day 31 of our admission...and since it is 1800 now there is no chance of going home today. I really am starting to go stir crazy! This room seemed so big when we first arrived now it seems tiny, and very prison like.

Ben's pain is starting to be a bit better controlled. He is still on oral morphine a couple times a day as well as oral ibuprofen and acetaminophen. The infection is finally starting to resolve after a week of antibiotics. Friday the doctors had Ben's IV removed and he is on oral cephalexin.

His feeds have been kept on the same volume and frequency but we have graduated to just breast milk. Tomorrow we will meet with the dietitian and see if we can go home on just regular feeds.

Wound care is all up to Ashley and I now (although we have been doing it all along) and the wounds are finally starting to look less angry. I hope that means that we can finally go home!!

Today my dad brought Victoria to visit, along with my Uncle David and Aunt Eleanor. To celebrate I dressed Ben in his blue and white stripe outfit his grand-mum sent him from the UK.

Here are some pictures of Ben with his big sister!! They really look alike!! Too cute!

Say Cracker!

Harrison is so cute when he tries to say cracker, it comes out kacker more than anything but still cute!

I ask him to say Kacker when he gets his picture taken:

Cute!

Long Week...Post Op infection Picture...

I think time has actually stopped!

This week is going on forever! I just want to go home!!!!

Ben's infection is finally starting to clear after 4 days of IV antibiotics. Even though the picture still makes the sites look angry and down right nasty, it is a million times better than what it was! Auntie ACE this picture is for you, by the way! I emailed it to you this morning but just in case you don't get it, I thought I would put it on here as well.

As far as pain control, Ben is on a whole cocktail of medications. The morphine seems to be working quite well in addition to his IV anti-inflammatory. The poor kid hasn't had much sleep so it is a blessing that the medications force him to sleep.

His feeds are going well and this morning he was up to 4.672 Kg. The NG is long gone and all feeds are more or less on demand by mouth.

Child Life brought in a bouncy chair for Ben to use, since he can now sit up and enjoys looking around. Child Life also arranged a visit from Buddington the therapeutic clown, for Harrison. Harrison loved watching the clown blow bubbles and sing songs with him.

We spent Valentines day in here with Ben and Harrison. Ashley got a Chinese takeaway and we watched TV and played with the boys. Romantic AND exciting no??

The decision was made this morning to keep turning the screws at least one more day and to "hang on to us" until Ben's pain is being managed a bit better, not to mention the infection needs to clear a bit more.

I just want to go home! It will be so nice to put Ben in a regular car seat and drive off to the normal world and be able to stop feeling like a permanent hospital resident!

Just think in a few weeks we will be readmitted to have the hardware remove and all this will start again....OH JOY!

Road Block

Poor little Ben has been through so much this week already, and now a minor road block.

Ben started being out of sorts late day yesterday. His pain meds didn't seem to be doing much for him. His anti-inflammatory (Toradol) was discontinued in the morning so I thought maybe that was why.

Ben spent most of the day awake but not himself. Dr.Hong came in and turned the screws while Ashley was with him. He really didn't seem that bad even though he didn't seem comfortable.

After Ashley and Harrison left for Ronald McDonald House, I sat with Ben watching TV. I noticed that he kept trying to rub his NG tube out and was hitting his hardware and incision. The sound he was making can only be described as something between a whimper and a yelp. I notice everything looked really red. I tried to pass it off as irritation where the screws had been turned not long before. Within the hour I noticed there was some drainage from around his right external screw. I was concerned about infection, so I ring the nurse. She was able to start ibuprofen and would leave a "note" for the doctors to have a look at it in the morning.

There was a concern about infection from the doctors stand point as well. Ben has been started on IV antibiotics. Dr Hong said he would also make arrangements for some additional IV pain medication although that hasn't started yet.

Hopefully after a couple more days the turning process will be complete and the infection will be under control. It certainly isn't a bad infection however that's not to say if it was let go it couldn't become one. Fingers crossed this will all be behind us soon.

Two of my Boys.....

All this hospital stuff wears them out.

Just like Daddy...

A Long Night

Ben had a long night. He just couldn't settle to sleep. His sleep patterns are all out of sorts from being medically kept asleep for days. Plus every time his hand touched the external hardware or any part of his jaw or cheek he would startle, wake and obviously be in pain.

While this went on from 11pm until 4:30am we are slowly getting Ben back into his routine. At 9:30am we discontinued his continuous feeds and at 10:30am we offered Ben his first bottle post op. He loved it and did so well! We only offered 2 ounces but he sucked them back far better than he ever did before. No laboured breathing, no coughing or chocking and no stopping. He truly is a new little man.

The nurse found him a mobile and fell asleep for his nap by himself watching the little fish spin around.

Some pictures of a sight I am NEVER going to get tired of...Ben sleeping on his back!!!


My Benny Bear Sleeping:

And again:

With his mobile:

I have his hardware covered with a terrycloth bib so it isn't catching and it seems to be helping to keep him comfy:

AND THE BEST PART OF ALL.........

His O2 sats are 100 and his heart rate is 117!!! This surgery, as hard as it is/was, has been an absolute miracle.

Now to get rid of the NG and get ourselves home!

Daily Dose of Cute

Bye Bye PICU

Today we left the PICU. The nurses and doctors waved us out and it was a very happy moment for us all. We are back on 7th floor, on the surgical side. Ben is very VERY swollen (as you can see in the picture) but he is so comfortable.

Lets hope all keeps going well. At the moment Ben is on continuous feeds. Tomorrow we are going to start introducing his special bottle again and see how we go. I am hopeful we are getting close to saying goodbye to this place!

Today.....

Ben was able to be taken off the ventilator. It was the most wonderful thing I have ever seen in my life.

They anesthetist and respiratory therapists came in, took him off the ventilator and Ben laid there on his back and was able to breathe on his own!!! This took us all by surprise since we weren't expecting these results until Sunday!!

For the first time in his short life I was able to hold him like you would any other baby and nothing bad happened. I cried...again. It was wonderful!

Post Surgery Pictures

Baby Ben on his ventilator:


Close up of the incision and external hardware:

And again:

And Again:

Side view:

Poor Little man :( :

Hardware shot with the dressings still on:

Little man resting:

Ben and his massive amount of wires and tubes:

Cuddled up under his blanket in the PICU:

How to kill time in a hospital....

Harrison style.....

Apparently it was like that when he got there lol!

Faith....

It's 1am. I am sat in a little room with a bed just off the PICU and I am left wondering how after everything we have been through we can still have faith.






Somehow we do...and right now that is all we can cling on to. We have to have faith everything will be okay. We have to keep our faith in a team of doctors we have known for only a few weeks, to be the best at what they do.

We have to keep the faith that by next Sunday Ben should be able to breath on his own and okay...

PICU...The room with a View

Here we are...Day one post op and in the PICU.

Yesterday was long and hard. It was a day of waiting. Parts of the day flew by....others went on forever....I will update as best I can, but I am spending most of my day sat by Ben's bed in the PICU.

Ben's pre op stuff was completed up on PMU and at 0955 nurses Lisa and Katie walked Ben and I downstairs to the operating theaters. Ashley stayed in the 7link playroom with Harrison. Harry knew something was up and didn't like it. He needed either daddy or mommy in his sights at all times.

Once downstairs I was taken through a labyrinth of locking doors to the preop area. We were placed in cubical 5 and began waiting. Dr Belowzy came in first with 2 residents and gave us one last presurgery pep talk. He told me Ben looked so much bigger and stronger than even the last time he saw him. I honestly didn't take in much. I was too concerned with hugging and cuddling Ben while I could. Playing with his hair and trying desperately to remember what he looked like, even though I could still see him.

Dr. Hong was in next. The theater was being cleaned and set up and once ready they would let us know. He also gave a little pep talk on how he anticipated things to go well but again I just wasn't in a place to take in much new information.

Dr. Wright our anesthetist came in and he and a resident went over all the things we went through the other day.

Eventually after 45 minutes of waiting the OR nurse came in and confirmed the consent they had on file was in fact what I had signed and that I knew what I signed. She placed the consent on the front of Ben's chart. She returned moments later with Dr. Wright to take Ben. Ben slept the whole time. I was able to carry him to the last set of locking doors before his operating theater. I handed him over and watched them walk away. I was left holding his blanket like he was still wrapped up in it.

I held it together until I got outside the green elevators to go back to 7th floor alone. I cried...a lot. I managed to get it together until I was back on 7th and saw Ashley, Harrison and Jackie (our social worker) and I started crying again. For the first little bit I walked around like a moron, holding onto Ben's blanket. It still smelled like him and I just didn't want to let it go.

The rest of the day was horribly long. Hours went by and no updates. We walked Harrison up and down the halls, had showers and packed up.

Finally by 1:30pm we got an update that the bronchoscopy was done and one side of his jaw surgery had been completed. The social worker was trying to get me a room so I could stay on site and be close to Ben but that room wasn't available yet.

By 4pm still nothing. No more updates. Nothing. Time had stopped as far as we were concerned. My mobile phone had gone wrong so the charge nurse, Linda, found me a pager. The thing was HUGE! It literally looked like it was from 1982! Anyway we went to get a tea and were paged back. The surgeons were done and ready to talk to us.

4:30pm Dr. Hong and Dr. Belowzy gave us the news that Ben's surgery went well. For such a small little guy his bone mass was good and the surgery went as well as they could have hoped. The bronchoscopy was essentially normal as well. They warned us the incision sites would look a bit odd and that there was some blood seeping from around the external hardware. It would be about an hour before he would be stabilized in the PICU and we could see him.

5:00pm We moved our things down to my new room right outside the PICU and waited some more to see Ben.

Just before 6:00pm we were able to go into the PICU and see Ben. He looks so tiny. He is laying on a big bed. The doctors have him pharmacologically paralyzed and will for the next few days. He is on a whole host of pain and anti anxiety medications. He has an IV for hydration and is receiving antibiotics to prevent infection. He is on a ventilator, and all his vitals are being monitored on three different monitors. He has a catheter in place and he is so pale.

The hardware is so tiny. I am not sure what I was expecting but it is smaller than I thought it would be. The site is still seeping blood but doesn't look to bad. His swelling wasn't too bad but we were be warned that it will more than likely get worse.

Late last night and overnight the nurses were having trouble maintaining a good blood pressure on Ben. They have adjusted his pain and sedation medications as he also seemed a bit too sedated.

He is now receiving and infusion of Albumin to help with his blood pressure along with more fluids. His urine output is not what it should be and the PICU doctor is looking at starting Lasix as the swelling has increased a fair bit. The poor little man doesn't really look like Ben at the minute.

Dr. Hong came in and started advancing the jaw this morning. Ahead of what was planned but it was a very slight movement. The hope is over the next 48hours they will try to extubate if Ben is otherwise medically stable. Right now everything is wait and see. Hopefully in 5-7 days we will see an improvement.

I am heading back to the PICU once I post this. His little spot is at least bright as it is by the window. It at least offers a change of scenery from being glued to one of his three monitors.

We are back where everything beeps, respires or alarms. Things aren't as "busy" as the NICU but the "busy" is replaced with quiet urgency and our waiting game continues.

This is it...Surgery is TODAY...

This is it...we made it. We have survived the week.

In a little less than four hours, Ben will be taken into the OR and the start of his next journey will begin.

He is sleeping so peacefully at the minute, but I just want to wake him up, pick him up and hug him to bits. He looks so small laying on that bed I am not sure how I am mentally going to handle having him whisked away to surgery.

I managed to get some sleep last night but not a lot. I am nervous and scared for him. I wish I could be the one to do it for him.

I am assured the end results will more than make up for this, however right now I am not so sure.

I can't believe that we've made it to today, the next 12 hours are going to drag on for ever.

Today is it...SURGERY in 3.5 hours....

1 More Day....

We are one day away from the big surgery.

Today was all about getting ready. Scheduling the feeds to stop, starting IV's and blood work.

Ben's weight was up again, to 4.375kg. They also took his height for only the second time since admission. He has grown a lot and is up to 57.5 cm.

The IV looks worse than it is. Ben's arm is boarded to keep it in the right spot but makes it impossible to lay him down and keep him comfortable. The actual IV for hydration will begin through the night but at least that is one trauma over.

I went for the tour of the PICU today. At least it seems a bit quieter than the NICU. We aren't sure how long Ben will be in ICU for but we know at least a few days. As much as I don't care where in the PICU we go I am secretly hoping for the spot by the one and only window. I think it would make being in there far more bearable. I was shown where his ventilator will go along with what all the other monitors are and where his IV pumps will be placed. I was reminded he will be medically paralyzed to keep everything in place and to be prepared to find a very pale, and roughed up looking little boy tomorrow. The OR is booked from 10am to 3pm but I have already been warned it may take longer. I was given a pamphlet on the PICU rules and all the ins and outs. I was also given a parent journal to use, in it was already written the charge nurse's name that will be on tomorrow and the doctor that will be responsible for Ben in the PICU.

We are down to one day. I can't believe it is this close. The waiting is insanely hard. Part of me wants to tell them to just forget it and the other part just wants them to get it over with now. I can't quite wrap my head around just how much this is going to change Ben's life, and ours too for that matter.

1 more day....just 1 more LONG day...

It's 2am...

...and I can't sleep...or rather you aren't allowed to sleep in this place.

Someone is always in the hallway making noise, one of Ben's machines alarm, or someone decides to come in and ask you something stupid and pointless that could have waited until morning...

UGH....I soooo need a few hours sleep!!1

2 Days.....

We are down to the last 2 days before surgery.

Not much happened today since it is a weekend.

Mostly residents came in to see if we were alright.

There was a mix up with the order entry and the concentrate that Ben's milk is being fortified with was cancelled and the floor ran out. It took over 12 hours to fix. Turns out the wrong order was cancelled and then the formula room was left trying to figure out exactly what it is we have Ben on now.

Ben's weight is up again 4.360 Kg (4360g). I wonder what he would be up to had the fortification actually been done correctly the past few days.

Tomorrow I am sure will be difficult. Watching everyone start getting Ben ready for surgery. Stopping his feeds, starting the IV's and changing him from his normal clothes to the hospital wear. Blood work has been ordered for tomorrow for blood typing. I also had to do a short questionnaire on weather Ben had blood products before, any transfusions and reactions. That kind of thing. Luckily no...and hopefully it will stay that way!

Only 2 more days...the waiting is getting to me now.

T-2 days....

This Says It All

3 Days...

We are down to 3 days before Ben's surgery...it doesn't quite seem possible.

The sleep deprivation is getting to me. I have held it together until now but I am right on the edge of a breakdown.

Today was weird anyway. Things started with an ENT resident telling us the Bronchoscopy will be done on Monday after Ben's airway is secured and prior to the big jaw distraction surgery. He then mumbled something about Ben's palate repair and left.

The pediatric team came in for a social visit. They have become more like Ben's personal cheerleaders more than doctors.

Dr Hong was in and gave us the big "talk" around surgery and what to expect. Most of it were things we had already gone over. He went over complications and chances of failure. I know they are things he has to say but thinking Ben is going to go through all that and then not have it do anything is heartbreaking. I signed the consent and put it out of my mind.

Social work checked in but really, aside from scanning the medical letters for Ashley, they have really done all they could do for us.

I am burnt out...I want this journey to be behind us.

T- 3 day.....

Not long now...

Way to go Ben!!!!

Ben's teaching award from Dalhousie and the IWK! Way to go Ben!!!!

4 Days...

Only 4 more days.....

Marlon the pediatric resident was in early and wrote another letter for Ashley for work.

The pediatric team was also in. Ben's skin looks much better so they felt it would be best to lower the dosage of the hydrocortisone. They have lowered it to a 0.5% concentration.

The Eucerine cream is helping is poor dry skin and will continue to be used at least twice a day.

Dr Suzedec liked my sign on the door and felt it was very appropriate given Ben's upcoming surgery.

I signed a consent for Ben to be a 'teacher' to the second year medical students. It was very rewarding to be honest. Ben and I were assigned two students and they were given the opportunity to interview us and practice there assessment skills. The doctor following the students was great and brought all the students that came to the unit in and showed them how to do a physical examination on a child who has Pierre Robin. At the end Ben received a certificate from Dalhousie University and the IWK for his fabulous teaching skills. Not bad only a little over a month old and already a certificate from a university!

Anesthesia came in at the end of the day to talk over what will go on for Ben on Monday and did his preop anesthetic assessment. Ben tolerated side lying and sitting up better than he had thought he would so that was reassuring. The doctor explained the arsenal of options he has in his medical bag to keep Ben breathing, including one that involves a special fiberoptic camera and a guide wire. He did prepare us that due to the difficult airway he may need a tracheotomy. He did stress it would be temporary and heal over very quickly. He does not plan on that happening but it is an option on the table. He also discussed all the possible side effects of the anesthetic including adverse reactions and rarely death. Having the death conversation about your child is NEVER where you want to go. No matter how unlikely it is not something you want to think about. It is very hard not to go to a dark place after hearing that. He did say we don't "plan" on that happening. I was thinking "How nice of you to not plan on killing my son!" but decided to keep my big mouth shut.

Dr. Hong stopped by and reassured me that the tracheotomy is the last plan of action and he is confident Ben will tolerate the procedure well. He and Dr Belowzy will be by again tomorrow around noon to go over all the surgical specifics and get our informed consent for our big day on Monday.

Luckily enough Ashley and Harrison are finally over their colds and were able to come back to see me this evening. We did go out for a bit and took Harrison to McDonald's. I enjoyed it so much. Unfortunately Ben managed to get his NG tube out....again! I felt so bad for Ben and I guess leaving wasn't really the best decision I could have made...even if I did need to get out for that short time.

Hopefully tomorrow won't be too overwhelming with our meeting with the surgeons. I am not going to hold my breath on that one though...

T-4 days....

Optimism Break

Lets all take 33 seconds and have an optimism break....







Optimisim certainly isn't easy but always rewarding.

5 Days

Only 5 more days....

Today has been hard. Not because anything happened so much as that everything is really starting to get to me. I haven't had proper sleep in ages, Ashley and Harrison have colds and have been in the valley since last Thursday night and I haven't left this little room (other than to accompany Ben for tests) in over a week. Needless to say the mommy is going 'round the hat rack!

The residents started early, it wasn't even 7:30am when they arrived. The ones from ENT that is. I am not really sure why but they were questioning when Ben was having his bronchoscopy and honestly they knew about as much as I did.

Some of the residents and nursing students haven nasty colds so I have been making everyone put on a mask before going near Ben.

When the resident team came in I pointed out that the rash on Ben's face hadn't improved and that I am sure it is from the linens here, since he didn't have the rash at home. A hydrocortisone cream has been ordered although to this point I have yet to see it.

The main resident, Marlin, said that Ben's surgery "should" happen Monday. This makes me wonder if there isn't some internal force at work that may delay us farther in this journey.

Dr. Suzedec was in as well and is very pleased with how little Ben is growing. She agrees that it looks like his little jaw is growing on it's own. This is a very promising sign that surgery will indeed be able to fix Ben's airway.

Ben's weight is up again today. He gained another 50g since yesterday. That puts his weight at 4240g (4.240Kg). At least we are getting somewhere on that front.

The call bell system went down shortly after lunch and I was told to "Yell REALLY loud" if there was an emergency. Not very reassuring but luckily not something I had to test.

I have also asked that a note be placed on Ben's file in regard to his NG tube. The last time the tube was pulled out the ENT people put the tube back down the same nostril. I have asked the sides be alternated (like they are supposed to be!!) the next time he needs to have it changed or it becomes dislodged. Hopefully this will help, since his cheek looks pretty red and I want it delt with before it gets sore.

Messages have been left for our main ENT doctor (Dr. Hong) and our plastic surgeon (Dr. Belowzy). We should hopefully know tomorrow when our big presurgery meeting with them is. We also should know where the vanishing letter from Dr. Hong has gone and where and when the bronchoscopy is going to be exactly.

Ben loves his ladies on the unit, and the nurses all love him. Every one of them wanted to look after him and I basically got kicked off the unit! I broke down and did as they asked and took some time to leave the unit for a few minutes. Perhaps being cooped up in this room for so long is making me a bit loopy!! I walked over to the women's site via the link building and went to the Ronald MacDonald family room and used the phone there to call Ashley. I also had a fresh cheese tea biscuit, right out of the oven. It was so good and the closest thing to real food I have seen in a while.

It may have only been 30 minutes but I needed it. Hopefully once Ashley and Harry are feeling a bit better we can all go out somewhere for an hour or two and just clear our heads.

We are getting there slowly....

T-5 days....

Am I Really THAT Over Protective?

Perhaps I am a bit over protective, okay a LOT over protective.

I had a minor freak out this morning at the residents. Some where full of cold and coughing and sneezing. I asked them all to put on masks.

I'm sorry, Ben is having surgery in a few days and he is NOT getting sick on my watch! I mean honestly if my husband and son aren't here because they have a cold, AND I haven't seen them in almost a week then I am not letting ANYONE in whom has anything resembling a sniffle. Sorry that's just how it is. Hence the bright blue sign I made and put on our door.

I think the little happy face makes the sign less bitchy...no??