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!

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....

Today was our follow up appointment with Ben's ENT surgeon; Dr. Hong.

Over all he made out well. The doctor seemed pleased with how things were going and this means we are able to move on with round two of surgery.

This time we will be removing the external and internal hardware. Not as big of a deal and it should ( I can't stress the SHOULD quite enough) only be a few day admission this time.

Our pre-operative work up is Tuesday April 10th. This will take, from what I am told, most of the afternoon.

We are to be back to the day surgery/same day surgery area the following morning for 7:30am!! I am going to try and stay at Ronald MacDonald house, to avoid filling the van with fuel twice!

I have to admit I have very mixed emotions about surgery this time. I mean on the one hand I want the metal work out! On the other hand last time Ben ended up with a ridiculous amount of post operative pain that had to be controlled by morphine AND he ended up with a very nasty post operative infection that required 6 days of IV antibiotics followed but almost 3 weeks of oral antibiotics. I would really like to avoid BOTH this time around. Not to mention I went more than a little stir crazy in that hospital last time.

Now we just sit back and wait....T-33 days until surgery round two...

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...

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...

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....

The Exam is over

I wrote my first HIM exam..it wasn't that bad. I am finally starting to get over the flu and Victoria is starting to feel better too. Next week I have my last 3 back shifts before vacation!!! Once I make it past that it is clear sailing to my vacation!!!! 21 days left!! YAY!!!! Anyone want to come with me???

Now I'm MAD

After ALL the invitations for Victoria's party have gone out the idiots (too mild a word but trying to keep it G rated) have gone and booked another function over top of us!!!! I am SO mad!!!! I now have to scramble to tack down all the kids invited and tell them of the changes...and even worse I have to find another venue for the party! So mad!!!!!! Anyone want to help me with this party????

And We Still Made The Bus:

Mornings are chaos. Today was no exception and being a Monday it was, NO exception. The day started something like this:
6:00 am --> Alarm goes off....I hit snooze and hope Monday will go away
6:10am--> Alarm goes off again....guess it isn't going away and figure I better get up.
6:12am --> Check the pellet stove and realize it probably should be turned off so it can be cleaned...I however am far to cold to entertain this idea so I throw some more pellets in the hopper and head for a shower.
6:15am --> I get in the shower only to discover that I have not replaced the shampoo and conditioner bottles I emptied yesterday...GRRRR....I use baby shampoo and hope no one notices.
6:28am--> I can't get the tap to turn off...no matter how much I try the water just keeps flowing. GREAT!
6:45am --> I have FINALLY located a wrench and get the water turned off....and am left feeling like I would like another shower but realize there isn't time. I start cleaning the bathroom (This is a chore that should be illegal at that hour of the morning) and throw on scrubs. (Thank goodness picking scrubs that match doesn't take too much mental effort) I sit on the floor and dry my hair in front of the pellet stove.
7:00am --> I make the first attempt at waking up the sleeping princess.
7:05am--> I make the second attempt at getting the sleeping princess from her bed...she is not amused
7:10am--> I get the "awwww cereal again mom" *sigh Thankfully she eats it and lets me fill out the lunch program form from the week.
7:12am--> I realize that I have next to no change in my purse and paying for the milk order and lunch for 2 days will eat up all my change. Oh good...who needed coffee anyway!
7:15am--> A large crash comes from the kitchen followed by a "mom I am going to go brush my teeth"....hmmmm could something be amiss in my kitchen.
7:16am-->I step in cold oatmeal that has fallen on the floor from the plastic dish that came crashing to the floor. Cold oatmeal feels really gross....especially through a sock....EWWW. On the plus side at least nothing was broken in the crash.
7:25am--> I have clean socks and attempt to do my hair...I have the curling iron out and half the ends of my hair flipped the way I like when my daughter walks in still in her pjs!!!! I ask her to please get dressed the bus will be here in less than 10 minutes. She cooperates....I cannot get my hair to cooperate and I start to wonder if letting a five year old pick out her school clothes was a mistake.
7:31am--> Victoria is finally dressed. Pink camo pants, a sparkly pink tshirt and pink socks...she matches and looks cute...I am happy. I try to get my daughters hair in a pony tail. She keeps telling me it isn't in straight. I tell her it will have to do.
7:33am--> The bus enters the subdivision. I panic as we are not yet ready. I throw a juice box, and snacks in a lunch box (she is ordering lunch today) and manage to find her homework book and cram it all in her backpack. I notice my daughter has gone MIA. I still don't have make up on and have to leave for work as soon as she is on the bus...this is going to get interesting.
7:34am-->Victoria reappears wearing her princess tiara. I don't have time to argue and let her wear it. I make a frantic dash back to the bathroom to make sure I unplugged the curling iron...I did but don't remember doing it. We get in our outside clothes...I grab my keys and work bag. We finally leave the house.
7:36am--> I can see the bus coming up the road. I throw my stuff beside the van, grab Victoria's hand and RUN!!!!
7:37am--> WE MADE IT!!!! Victoria is getting on the bus and waving good bye. I start my jog back to the van to complete my morning.
7:47am--> I am in the Tim Horton's drive through. The line is insanely long. I get my emergency make up kit out of the glove box (don't judge me) and apply my make up (while stopped in line) waiting to order my coffee. They mess up and try to give me a large when I ordered and extra large. I didn't bother to argue though I should have and normally would have. I pay with change on the dash since my purse is empty of all currency.
7:53am-->There is a traffic jam at one of the toll gates to the parking lot....I manage to back up and pull into a lot further down. Great I m going to have to run.
7:56am--> I have parked and make an attempt to juggle my coffee, 2 work bags, my purse and id tag....I try to jog to the hospital without spilling my coffee or the contents of ANY of the bags I am carrying.
7:58am--> I am at work and on time...barely ...I think this should qualify for an Olympic sport LOL.

I can't believe it is only Monday!!!