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...

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....

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...

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....

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....

6 Days...

Another day down and one day closer to surgery. Only 6 more days.

Today was a normal day on the Pediatric Medical Unit. The nurse was in by 7:30am, the pediatric resident was in by 8:00am. The whole team was in to see Ben and discuss his progress. How he was doing on his medication and if the cream was helping the dry skin on his poor little face.

Feeds have continued as normal, trial by bottle first followed by top up NG feeds. I am now a pro at the feeding pump and have actually been showing the nurses a few tricks I've learned along the way. Ben is back up to taking 2 ounces or more by mouth every feed during the day. His weight continues to climb and he is up to 4.190 Kg as of this morning.

The dietitian came in and discussed a care plan. It looks like Ben is far surpassing their expectations for weight gain. We all agree to not change anything prior to his surgery. After his surgery she feels the NG will slowly be discontinued. This gives me hope that with a lot of hard work with Ben we can get him feeding and gaining weight totally by mouth and get rid of the tube within the next few months.

I have been working with Ben to help him develop his jaw muscles. The doctors have suggested a minimum of ten minutes of sucking on his bottle at his feeds, allowing him to use his soother and facial massage. I have been allowing Ben to stay on his bottle for up to 25-30 minutes if he is interested and offer his soother while the feeding pump is infusing. I am sure poor Ben thinks his mother is on drugs by the look he gives me when I try to massage his jaw and cheeks. Only 6 days.

This time next week we will be post surgery. T - 6 days....

7 Days....

We have the date. Ben's surgery is in 7 days.

The weekend was painfully slow and today has been a never ending stream of faces. Most of the information was information we have heard before...and the normal interruptions for vital checks and feedings.

Dr Hong was in and took some pictures of Ben to get ready for next Monday. It's really happening. In 7 days Ben starts his journey. I can't even imagine what he is going to go through or how scary it must be when you are that small and don't really know what is going on and why everything is happening. To see him be able to breathe comfortably and not struggle will be so wonderful, it is just everything between now and then will be hard.

I think both Ashley and I are running on empty. This has been emotionally, physically, psychologically and financially draining. I can't help but wonder how we will find the strength to keep going and provide Ben with the support he needs, but we always do. Perhaps it is better not to question where it comes from and just be glad we find it from somewhere.

T - 7 days.....7 long days....

More of the Same....

Today was very quiet on the unit. It was strange. The pediatric resident showed up as did the resident from ENT to make sure there were no problems with Ben's new NG tube. The nurse came in from time to time but over all it was rather quiet.

My parents were down for a visit, which broke up the day for me a bit. Believe it or not I also did laundry. There are washers and dryers on the unit, and Ben needed some things doing very badly, so I broke down and did laundry. It was nice to do something normal...even if it was laundry.

I am sure the quiet will be broken tomorrow. The parade of people will continue and there will be confusion around what Ben is having done when, where and by whom.

Fingers crossed there won't be any Monday Madness for us tomorrow.

I'm never sleeping again...

or at least not until we are home! I really did not like how last night went. Honestly I feel like I have to be awake all the time and "police" what the nurses are doing. This is the first really concerning episode since our admission last week to the PMU unit. The nurse we had was fine she just did what she felt like when she felt like doing it and it really ticked me off....One of these times I will say something to get myself kicked off the unit but Ben cannot speak for himself so I am going to!

First off this nurse was kind enough to offer to do Ben's NG feeds for me...which would have been fine except she mixed up much larger volumes of his food than needed and pumped in what she felt like he should get and not bother with what had been decided with the dietitians and paediatricians. Minor so I just told her "You know what I will just sleep between feeds, it will be fine. I will do it." Well Ben wouldn't settle after she had flushed his NG tube so she "thought" perhaps he felt warm, so maybe he had a fever and she would give Tylenol to settle him.

I made it clear that he was ONLY to get the Tylenol if he had a fever. He did not but she gave it anyway even though I asked her not to. He was not in pain, he had no fever and he settled with in a few seconds of my picking him up. I let it go. Murdering a nurse at 2 am would not have won me many friends.

This morning it was discovered that Ben had dislodged his feeding tube. ENT had to be called and over the course of an hour a room full of doctors and nurses finally got it reinserted.

Unfortunately placement was questioned. The resident wanted to pull the tube out and try again. I wouldn't allow it. Instead we went and had an X-Ray to check the NG tube placement. While exposing him to radiation isn't a good idea either I just couldn't subject him to having one NG pulled out to have it put back in and have an X-Ray after that anyway. The NG is in the right spot so all was okay.

It seems like everyday in here is a test.

Woohoo

Today is a very special day. Today Ben is FINALLY above his birth weight!!!!!!!!!

Today's weight.....4025g or 4.025Kg!!!

8 pounds 14 ounces.....2 ounces above what he weighed one month and 12 days ago.

Progress....finally progress

Tired....

I am in need of some rest. Ben's O2 monitor alarmed off and on most of the night. When it wasn't alarming the kangaroo feeding pump was alarming. I tried very hard to rest but it just wasn't in the cards and got perhaps 2 hours of sleep total, but it was VERY broken sleep.

This morning Ben had his scope in ENT. A small camera was passed into the upper portion of his windpipe and visualized on a small TV screen. Thankfully everything looked normal and structurally we are only dealing with a small jaw and chin.

Ben will be "wait listed" for his bronchoscopy and get that sometime early next week as the OR time allows.

We are one step closer to surgery...it still doesn't seem real.

Long Day

Today was Ben's CT. It was a very long day, and honestly harder on him than it was on me.

Overnight we delayed all his feeds for 20-30 minutes so that his last feed would be around 6am. We also decided to push all the feeds via the NG tube to allow him to rest in preparation for the long day ahead of him.

At 8 am we were told that we may get to have the CT done early so to start getting Ben ready around 9:30. I dressed him in his Jonny shirt and started the NG pump with clear fluids he was allowed.

10am and nothing...we were still waiting.

11:30 Ashley called to let me know how he and Harrison were doing. I cut the call short since someone was at the door.

The resident for pediatrics was at the door with the nurse whom was less than amused. I couldn't quite grasp why she was here. She explained that (not unlike yesterday) there had been a "misunderstanding" between departments. The person booking the CT was under the impression that Ben would be allowed to be sedated and remain on his front, the radiologist however wanted Ben on his back meaning he would need to be sedated with a breathing tube, Dr. Hong wanted the CT done on his front with no sedation. Since there were not 1, not 2 but 3 different scenarios the resident wasn't sure what the actual plan was going to be. She was going to page Dr. Hong and reassess the situation in 45 minutes to an hour.

I spent the next 78 minutes calling Ashley and generally fuming over the situation. Poor Ben was originally here to gain weight. He had to this point spent over 6 hours with no food and no plan to resume feeds until someone could figure out what the heck was going to happen. Not exactly easy for him to put on weight when he can't take a feed. I mean with an anesthetic clearly he can't eat before hand but I thought all these little details (like IF he was going to be given an anaesthetic or not) should have been worked out in advance of his fast.

At shortly past one Ben's nurse returned to explain we could resume feeds and that the CT people were going to "try" the CT unsedated and with Ben on his front.

After half of a feed, we were called to the CT. Ben was swaddled and placed on his tummy in the CT machine, the little protective blanket wrapped around him so only his little head was visible. Normally parents aren't allowed in but somehow I talked my way in, and was given a very attractive protective apron. I stood on once side of the scanner, his nurse on the other. I wanted to stay close so he would know I was there and didn't leave him.

Ben was a super star. He only moved once during the whole scan and from what the techs said, they were pleased with the images.

Now the waiting game started to find out if Ben was a surgical candidate.

At 1522 Dr. Hong walked in. A small surgical instrument pack in his hand. He told me he reviewed the scan and that there was in fact enough bone mass in Ben's jaw to have the surgery!!! He showed me the device he and Dr. Belozy would be using in Ben's jaw. He also said that tomorrow he would assess Ben's upper airway in the ENT clinic and if that was okay, then the instruments would be ordered and the surgeons would start looking for some OR time over the next two to three weeks. Once a date is booked a multidisciplinary meeting will be held with Ashley and I to discuss the benefits and risks of the surgery in more detail.


This day may have been long, and frustrating, however it ended on the highest of high notes. Ben is a surgical candidate. In a few short weeks he will be able to breathe easily. At the moment it doesn't seem possible...I just hope I'm not dreaming.

Strange Day

Today was odd. At times things seemed to be happening, yet here we are at the end of the day and nothing.

Ben's procedures were cancelled, apparently schedules couldn't be coordinated. The CT in the OR "should"now take place tomorrow.

Dr. Hong made a 3 minute appearance late afternoon, and really it was useless. The bronchoscopy will be done (and I quote) "whenever".

We have been here for 5 days but it seems like forever. The anxiety waiting for these tests is killing me.

I hope my nerves last through tomorrow.

READ THE SIGN!!!!!!!!!

It feels like I go over this daily...in fact I am sure I do. Last night we had a sign put up. I have been asked 4 times in 12 hours if he can go on his back. The answer for now is still no.

Yesterday was a strange day. Things seemed to happen quickly, yet at the same time it was like nothing was happening at all. The CT and bronchoscopy are hopefully being done today. Ben took his last feed via his NG tube and the kangaroo pump around 7:30am. He will need to be put under by the anesthetist and have a breathing tube placed.

The tricky part for the staff is that Ben has to be on his tummy and the tests and surgery need to be done on his back. This is why he needs to be put to sleep and have the breathing tube placed. Even the CT will have to be done in the OR. This complicates things further as so many staff need to be present for this to take place. At the moment Radiology, Pediatrics, ENT, Plastics, Respiratory, and anaesthesiology are all trying to coordinate their schedules with an available OR to get the test and procedure done. As of right now we hope he will be going later this afternoon, but we may have to resume the feeds and try for the tests tomorrow.

On a side note Ashley and I started our education/training with Ben's NG tube last evening. We were given a home tube feed package with information and ordering numbers. This morning I, along with his nurse, did a double check for placement. Then hooked up the pump, issued the feed, gave Ben his medications via the NG, flushed the line and taped the tube back so he won't pull it out. I felt very awkward doing it, but considering it was only my first time doing it solo and only the second time total, it didn't go that badly. I am sure by the time of discharge I will be able to do it in my sleep.

I hate that beeping machine!!!!!!!!!

It is impossible to sleep in this place...I am getting so tired.

All night long some thing was going BEEP!

First it was the kangaroo feeding pump.

Then Ben kicked off his SPO2 monitor.

This continued ALL night long!!! One would beep then the other.

All this has done is increase my anxiety levels and prevent me from getting any rest at all. Perhaps if the parade of people isn't too bad I will try and rest once my husband gets back.....

Somehow I wouldn't hold my breath on that one ***SIGH***

Pictures of Ben

Ben getting some much needed sleep this morning (yes I know he is on his tummy but he has to be to maintain his airway due to the Pierre Robin)


Watching his fishy mobile that the nurse brought him

And again...

Ben and Daddy chilling before anything started when we first arrived here on Friday:

And Again...

I think it is starting to show in the pictures that Ben is gaining some weight...even if we have only been here a few days. Lets hope this continues!

Weight Check

Last night was a good night for Ben. The pediatrician following us at the IWK, Dr. Szudec, along with the pediatric dietitian have Ben on a high calorie diet. Right now he is on breast milk fortified with a concentrated formula. The proportion has stayed the same as what Dr. Hilliard put us on a few days ago in the valley. 100mL of breast milk and 25mL of formula.

This is just short of 4 ounces. He gets this "4" ounces every 4 hours. They want him to try and take as much from the bottle as possible and just supplement with the NG tube.

• To give him a much needed rest, as soon as Ben starts to become sleepy and has no interest in continuing to be awake we don't push him and the rest is delivered via gavage. Overnight they are allowing him to sleep and giving the total feed via the NG tube with the use of a pump.

It seems to be working. For the second day Ben's weight has increased. From what the nurse was saying it was by quite a bit as well. This is a huge relief since he needs to put on weight and continue to gain before his surgery can be done. I wish the nurse had told me what he weighed; she simply told me "It isn't good for you to be fixated on numbers, you will drive yourself crazy." Very nice nurse, very good to Ben and she knows her stuff....still I will go behind her back and ask his nurse tonight what he weighed.

Fingers crossed this continues and Ben's weight at least gets back to his birth weight over the next few days.

NG tube....Number Two....

Ben decided he no longer wanted nor needed his NG tube. While the nurse was doing his vitals his little hand yanked the NG tube out in one movement.

One nurse (who was covering for our nurse) thought it was okay for me to put another NG tube in....despite not ever being shown how, or the fact he can't tolerate being on his back AND it took a doctor and a nurse to get it in yesterday. Needless to say I told her that until he could be on his back longer than 4 or 5 seconds without his sats dropping I was NOT comfortable doing it and would not do it. I also told her I needed to be shown properly how to measure the tube, place the tube, hold Ben and so on and so forth.

In the end the ENT doctor on call, and Anaesthetist and our normal nurse came. It took all three of them to get the new (longer) NG tube in.

I think the plan is to do total NG feeds until the weight comes up a bit. I am alright with this. He needs his strength and to gain some weight so we can get his airway sorted out.

This can and probably will change again. Only time will tell

A Busy Night

Last night seemed to continue with the busy and the crazy. Ben's nurse was amazing. His name was Andrew and he honestly couldn't do enough for us. After asking all day for a correct pump kit he found the parts to make one between 3 store rooms. He found me a Medela micro steam bag to sterilize Ben's bottle. Again I had asked all day for one and no one seemed to be able to do it.

He also, like my husband and myself, questioned the reasoning for the NG tube if he wasn't going to be using it. We made our own game plan really. Perhaps that's why we like him. He said to try the feed and because he knew Ben had been through so much, he would check back on him early into the feed and if it didn't work we would gavage the rest. This would give Ben his much needed calories but still allow him to sleep. Andrew was busy ( I don't think the man stopped all night!) so he sent in another nurse to check on us. When he knew Ben was working way to hard for what little bit he got he started the gavage and let Ashley and I finish it.

Once Ben settled...he slept. Andrew made the suggestion that overnight and into the morning we would gavage feed to allow Ben a nice uninterrupted sleep. Ben could rest as long as he liked, conserve calories and still have a full feed. It was, for the first time in days, I felt relaxed. Ben had a full feed. He wasn't over tired...and he was resting and I knew even if I overslept that this nurse would be in to make sure he got his food. I really liked this nurse.

When things didn't go as planned at the 2am feed, Andrew improvised. The gavage wasn't working properly, the NG tube was too short for gravity to do it's thing. Andrew tried an extension and it didn't work so he got a pump. He made what we had work for the time being so that Ben could rest. He even stayed and helped me settle him once the pump feed was started.



The remainder of the night Andrew let me sleep and fed Ben whenever via the NG tube. I got some sleep (not much but WAY more than I have been!) and actually hope to try and wrap my head around what is going to be happening over the next few weeks.

Ben's nurse today is Sara and she seems every bit as motivated as Andrew was to allow Ben to sleep and gavage feed when he doesn't wake on his own in the given 3~4 hour window for feeds.

Lets hope that means today will be a good day.