So...

...we are still waiting to see what the final word on the PICC line is.

The radiologist was able to see it (FINALLY) BUT it isn't down all the way where they would like it. This may or may not be a problem, as Ben only needs it for antibiotics and not chemo nor TPN.

The doctors are supposed to make up their minds this afternoon so that the PICC can be tried.

The plan is IF we can use the PICC line as placed now to start the paperwork to get us HOME!!

I will be doing almost all the care myself however we will have to get private nursing care as well, and that may take a little bit of arranging.

There is no definite plan but things are starting to move in the home direction. Even though we are going home...the next 6-8 weeks are going to be really hard I think.

I will update more later when I know more.

I am slowly going CRAZY!!!

Today was a waste. Well not entirely but most of it was.

We were SUPPOSED to take Ben downstairs for a Bone scan...he was SUPPOSED to have and MRI and he was SUPPOSED to have 2 sets of repeat labs done.

It is 1730 and he has had 1 set of labs. Yup that's it ONE freaking set of labs!!!!!

The other tests were cancelled. They had Ben fast, had him dressed and changed, a new IV placed and everything. Once we got downstairs the radiologist decided it would be a pointless series of tests since he is so close post op and one set of tests had already been done. So they decided to wait and call ENT. ENT decided to cancel the tests until after we saw ID(infectious diseases)/Immunology.

Once we eventually saw ID/Immunology and they asked the same questions I have already answered  1,000,001 times, they decided.....(DRUM ROLL PLEASE)....to do the freaking bone scan and MRI. However because it was 1530 and Ben had eaten and DI was really busy we would have to wait until tomorrow. So we get to do this all over again tomorrow. Whoop dee freaking DO!

Dr. Mailman (the ID/immunology guy) isn't really sure what is going on. Because bone infections do not behave like other infections (mostly due to blood  supply mechanics) they can fester a long time before a positive diagnosis. He things it is reasonable to assume that this is a real possibility. However no one is jumping to start antibiotics because once started, the antibiotics will be fairly long term. With this carries the risk of Ben having an active C. Diff infection, which to a little guy like him is very serious. So right now they are fighting over how to proceed. Apparently if the tests tomorrow come back inconclusive there is another more specific test that takes 2 days to complete. Not much information was given to me on that but that is another possibility. Dr. Mailman has not ruled out the idea that it could be some other secondary condition to Ben's Pierre Robin. Many of the other conditions cause arthritic changes that could result in the elevated inflammatory markers and would explain his pain. The new things that came up from this consult were as follows;

• Labs to be repeated to follow inflammatory markers, as well as his WBC and CBC results. Urine to be sent as well for testing.
• The bone scan, MRI and possible other 2 day test (that has yet to be named)
• Consult with Cardiology (apparently the inflammatory markers with the WBC levels can indicated heart issues) more than likely tomorrow as it is late now
• Consult with nephrology to make sure nothing is up with his kidneys ( a common problem with Pierre Robin babies) 
• Consult with genetics, again
• Consult pain services to asses pain control
• Consult nutrition services (although not sure why as his weight is great)

So to sum up. I know NOTHING more than this morning. To be honest if anything the longer we are here the more questions that are brought up. Hopefully this mystery will be over soon.

I want to go home :(

Admission Day 3....

Yesterday was a bit exhausting. Most of it was spent waiting, although it wasn't really clear what we were waiting for.

Plastics and ENT were in again and decided yet more blood work would be needed. At supper time our nurse, Stacey, came in with another plan. More scans tomorrow, repeat labs and a consult with ID/Immunology. I had ENT recheck his ears since he was holding them. I didn't figure there was much point being admitted if it was a simple ear infection. After all babies/children with clefts are at risk for more ear infections and fluid build up. ENT took him downstairs to the clinic and had a good look with more specialized equipment. He saw no sign of infection, a tiny bit of fluid which he felt was insignificant and cleaned out Ben's ears since Ben was being so cooperative. So no infection and super clean ears...not really what I had wanted. At least with an ear infection we could have gone home.

I wondered why we had yet to start IV antibiotics since it looked like that was where this was heading yesterday morning. The poor nurse really couldn't help much. She didn't have the labs to review and all the information she had from the doctors is that his WBC didn't appear to point to infection although it was abnormal (I was confused as to what that means exactly) but all his other inflammation markers are "sky high". So for now the plan was to wait, watch and make attempts to control pain. The plus side is the aspirate from the lump was negative for infection so at least it isn't an abscess. Hopefully it is just scar tissue.

The pain control hasn't been great if I am honest. From his last exam at 1500 to 2320 last night he was so uncomfortable. He would scream, hold his jaw and ear, finally pass out from exhaustion only to wake a few minutes later screaming uncontrollably again. Our nurse over night, Amanda, tried the normal Advil and Tylenol protocol which did pretty much nothing. Amanda came in and allowed me to go downstairs to get a drink and some food since I had been in the room all day. She noticed he was clearly in pain and not just fussy. A late night consult with an ENT resident, whom to be honest looked scared to death of poor little screaming Ben, ordered Morphine. This allowed enough pain relief for sleep. He continued to moan and sob off and on all night in his sleep but he was able to rest.

Concerns are that it is early osteomyletis which hasn't yet taken hold as he was on strong antibiotics for so long, some other infection starting somewhere, some other disease process or genetic condition. There is also the possibility they won't find out what is causing it and we will have loads of follow up to try and figure it out.

The doctors aren't yet comfortable to send us home. Perhaps once they labs and new scans are in they may change their mind and let us go tonight or tomorrow morning. They seem to want answers as badly as I do.

For now Ben is back nothing by mouth. He will need to be sedated for his bone scan and MRI. The plan is to head downstairs at 11am for they dye injection then come back up here to wait for him to be sedated.

I will hopefully have more to update later on. Fingers crossed all goes well.

Looks like we're staying

I honestly thought we'd go home today. While Ben is still very uncomfortable, and had a very LONG night... his fever is down. He has had numerous X rays and other tests. I figured we would go home to wait and see rather than wait here. That however is not the plan.

While no one is coming right out and saying what is going on, I'm thinking osteomyleitis. Or rather I am thinking that is what the doctors are thinking it is what it is. Both ENT and Plastics have been in today. More blood cultures were sent. It also looks like Ben will be having a bone scan, ultrasound and another MRI. Kind of sounds like that is what they are thinking.

Right now we are busy "waiting and seeing".....so for now we are staying...*sigh*

The Day From You Know Where!!!

I think the best thing to do is start from the beginning. Ben and I arrived at the IWK early yesterday morning, 0645 to be exact. I had packed up and left Ronald McDonald house. We had to walk to the IWK as the spring/summer street cleaning schedule was in affect and I had to park the van in the IWK parkade. We threw our bags in the van and then reported to the Day Surgery area.

Things started out alright. We were admitted. Paperwork filled out. Forms and consents signed. I changed Ben into his hospital gown and we started to wait for the plethora of surgeons, interns, residents, med students, nurses and support staff to begin their parade. Ben had the remaining of his preop blood work and tests done. Dr Hong and Dr Bezuly along with the anesthesia guys came in and gave their speech. The OR was booked for 3 hours and felt it would probably be over with before that. The nurse came to take Ben away. He was crying and that made me cry to be honest. It was so hard... but they had to take him in to give him some pain relief and minor sedation prior to securing his IVs. The liaison nurse told me she would be out to give me a report as soon as they had Ben's airway and surgery was going to start. As promised she returned 30 minutes later and told me that the IVs were no problem at all. First attempt for both the one in his hand and the one in his foot. Good news. Ben is still a tricky intubation just because of his Pierre Robin anatomy. It is improved from before and the anaesthesiologist were able to secure his airway on the second attempt. Apparently he was given some oxygen and all looked well. Surgery was starting. They would remove the left, allow the plastics team to close the left then begin work on the right. All sounded fine to me. The nurse said she would report back in an hour and that would give me a chance to get coffee, breakfast, make phone calls or whatever it was that I needed to do. I made some phone calls, sent some texts and tried to update the blog. I did manage to grab on of Tim Horton's finest coffee and make my way back to the family waiting room. I sat down and waited....expecting to be told they were finishing up and that I would be able to see Ben soon. However that wasn't quite how it ended up.

The nurse reassured me Ben was tolerating the operation very well and all of his vitals were excellent. However the surgeons had encountered a complication. The left distractor was embedded in the jaw bone and the device was not as easy to remove as they had anticipated. While the whole OR should be over, the surgeons were still only on the left side and no where near being done!  The next update would be in 45 minutes. I went to call Ashley and let him know the plan. By the time I finished I sent a few texts and made it back to the waiting room. The nurse was a bit later that she planned on being, in fact she didn't return for over an hour! I thought I would go insane!

Eventually she came out to say that the device had been removed and that the plastics team had started their work. I knew the plastics part was going to be pretty intense this time. Dr. Bezuly had a really good game plan and Ben would be a new little man. I was so relieved to hear that they were nearly half done. Still I was going insane since it was almost 1330!!!! The right side was an easier removal and by 1445 Ben had made his way into recovery.  I have never been so relieved in my life!

Dr.Bezuly came out to meet me followed by Dr.Hong. Turns out the left side had a massive infection!! (Big surprise eh??? I've only been saying that for HOW long????? And dismissed for being overly cautious!!!) So in addition to being embedded in the bone, the distractor device had some puss on it. Lovely. There were some issues with the bone but nothing major and nothing that (at this point) will need additional intervention. Now for the cause. Apparently because Ben was so small there were very limited places for the distractor device to attach. One of the screws on the left distractor was too close the the fracture site. Because of this it was not anchored well and started to loosen and work it's way out! So this answers why the infection never totally cleared and why the poor little boy was in so much pain and crying ALL the time. It hurt!! The doctors have decided to stop the cephalexin and begin clyndamycin. By IV first then switch over to oral. The right side looked excellent and healed beautifully. The positive thing is Ben laid down loads of good bone tissue and the integrity didn't seem to be impacted by the infection. This spared us from bone grafts, metal plates and overall unpleasantness's in that regard!

I was assured he would be awake soon and that I would be able to see him. Over two hours later he was just starting to stir!!! They eventually allowed me in despite him failing to wake up. He opened one eye when he heard my voice, smiled, sighed, closed his eye and resumed sleeping. Just like a Floyd boy!



We ended up back in good ol' 761 around 2200. Our second home...what are the odds right? To be honest I think that made things worse. I had gotten so used to being in that room with OUR things in it. Pictures from Victoria and Harrison. Toys for all the kids from child life. Our suitcases and things from home. This time it was just empty and sad. Plus being so close to the elevator I could hear every time it arrived on the floor. I was so used to going to the door to check if Ashley and Harry were coming to visit. I did this more than a few times before realizing they weren't going to be there no matter how many times I checked and it made me even sadder.

Over the course of the night Ben went from being sedated to being inconsolable and back to being sedated.  He didn't have a great night, and neither did I. I am so tired I could just cry.

At 0730 one of the ENT residents announced that Ben was being discharged on antibiotics and I could go whenever I was packed up. I was livid. He wasn't eating, not controlled pain wise and had not been monitored for the 24-48 hours they stated after coming out of surgery as discussed in the preop. Nor was he back to eating normally or had they tried him on the oral antibiotics as they had told me they would in the preop. I felt very deceived and I knew they wouldn't be doing it if Ashley were here.

I called right then and there and got an appointment with our pediatrician in the valley, since they were offering no plan to manage Ben's pain nor the fact he wasn't eating.

I packed and left. I didn't want to be there if they weren't going to do anything for him. The drive took over two hours. I had to stop several times to calm him down, or clean him up as he was still feeling rather sick. I also decided to pick up his antibiotic on the way to save a trip to town later. I had to try 5 pharmacies before I found one that stocked the oral suspension!

We were seen by Dr. Hilliard. She was waiting for us actually. As always she was very concerned. She wrote some scripts for pain control. She also decided to place Ben on a probiotic supplement since he has been on antibiotics for nearly 10 weeks already!

Together we discussed a plan for Ben's feeding. He is still trialed on a bottle. If he will not take it I will syringe feed him until feeds go back to normal. I picked up the supplies when I filled the pain medication prescriptions. I need to get at least 20mL in Ben every hour to meet his fluid needs. Obviously this could be in a bigger feed or spaced into individual ones.  Dr. Hilliard is on call all weekend starting tomorrow so I can go to VRH to see her if need be. I will see her back in the office Tuesday regardless. Should Ben's weight go down we will go back to fortified feeds, or discuss NG-pump feedings (since I have been trained and have all the supplies).  I feel better that there is a plan now.

Ben is medicated and sleeping now. The antibiotics make him feel sick and he hates them. Even his Ranitodine doesn't seem to do much to help with the reflux at the moment. I have been keeping the Tylenol and Advil going around the clock to try to keep the pain in check and have the stronger drugs if need be. (Fingers crossed we won't need much or for long)

Hopefully we will all have a good night and get some sleep. We ALL need it!

Still not done!!!

The surgeons have moved on to Ben's right side. Hopefully will be a bit easier than the left. They hope to finish within the hour or so. Fingers crossed!!!

Yet another update

Finally have the distractor out on the left and plastics is working on closing the site now....almost half done!

Oh my nerves!!!!

Update two

Our liaison nurse just came to update us. Ben is doing well so far. There has been a complication. Apparently they are still working on the left side. The distractor device has become imbedded in the bone making the removal more challenging.

For now that's all I know...next update in 30 to 40 minutes

Update one

After a very long night, Ben and I arrived to the IWK for his surgery.
It seemed like I answered the same questions a million times. Poor little Ben was not a happy boy. He was hungry and sore. After bloodwork and cardiology did their thing the anesthetist decided to give Ben some pain medication before securing his IVs.
The nurse took Ben away screaming...
I have just been given an update. The IVs are in and Ben is asleep. Once again he was a difficult intubtion, but luckily the anesthetists got his airway on the second attempt.

I will hear more in an hour...

This is going to be a long day....

Less than 12 hours

The final count down is on. In less than 12 hours Ben will be back in the operating theater for the second part of his mandibular distraction surgery.

It will be a relief to get rid of that external hardware, and the internal hardware too for that matter. However at the same time I am dreading it.

This time I am on my own. I don't have anyway to wait with. No one to distract me to keep me from watching the second hand on the clock as it seems to be stuck in the same spot.

While I know these doctors are experienced and more than capable at what they do, there is always the fear of the unknown. Any time someone has an operation there is risk, even if it is small. But lets face it...so far odds haven't meant much to us.

This is a bit earlier than what Dr. Hong had wanted to remove the device. He said the optimum time frame for the bone to ossify is 10+ weeks. We are only at 9 weeks. With all of his infections and pain, I can't help but worry what they may find when they get in there and what that will mean for Ben's course of treatment. Also there is the worry of post op infections again. Ben has been on antibiotics 8 of the 10 weeks post op already with only a few days break here and there. Every time the antibiotics were stopped the infection came back full force. It has been a nightmare and I hope this surgery will be the end of it! I worry about his breathing, I mean Pierre Robin babies are noted for breathing issues galore!! That with anesthesia can be a recipe for disaster. Nothing went wrong last time and his breathing was horrible so really the odds are not for anything happening, still given our track record I'd be a fool to dismiss it.

Then there is the feeding issues. Babies with Pierre Robin often have ongoing feeding issues. I have noticed even with just the infection that Ben doesn't take what he should at a given feed and I have to pretty much sit with him all day forcing him to eat, what he can, whenever he can. Luckily doing this until the infection started to become in control again allowed him to continue gaining weight and avoid another NG tube and pump feedings. I HOPE that his pain control is better this time and that he won't be so sleepy for so long. That his feeds can go back to normal and within a few days be home...or at least to my parents place.

I really should try to sleep but I am not sure I am going to be able to. Our room in Ronald McDonald House is in the basement, and I believe we are right below the toy area, given the thumping and banging, and other bizarre noises coming from above. Since Ben is asleep in his car seat I may take him in the bathroom with me so I can have a shower, since I believe for the first time since I arrived hours ago, the bathroom is free. The house isn't the same without our friends here. I miss Jeff and Cherlyn. This place just isn't they same without them. There was warm food waiting, and loads of friendly people, yet I wanted the comfort of a couple familiar faces and good friends.

I will try to update as much as I can tomorrow. Hopefully as things happen, since I am alone and need to keep my mind occupied so I don't end up admitted to the psychiatric ward.

T-11.5 hours....and Ben will be in the OR...Here we go again.

Bad Day....

This has been a bad day. End of story. Where do I even begin...

Last night Ben became inconsolable. It happened out of the blue...he just couldn't settle. I have noticed that his pin site has been getting progressively more red. However no doctor seemed to be too bothered by it. I got the "It looks fine" and "It's normal for there to be redness when there is external hardware" that kind of crap. Yesterday the discharge continued but was mixed with blood. I cleaned the sites with sterile water and that helped a bit I think. However last night I noticed a lump. A very small but definite lump by his right external pin. Over the morning it got bigger. It was warm. By noon you could see a faint yellow collection beneath the skin. I managed to talk the pediatricians office into seeing us. Problem was it was at the same time as Victoria's dentist appointment.

I made arrangements to drop Mom off at the dentist with Victoria and Harrison. I hadn't had my Iphone on me but when I got back to it I had a message that my husbands step mom had passed away. While she had been sick quite a while and we knew it was coming, it was still hard to hear.

I dropped Mom, Harrison, and Victoria at the dentist. I carried on to the pediatricians office. Honestly I was there less than 10 minutes. She did not like the look of it. She called the local hospital. She did NOT like what they said so she made arrangements for Ben to be seen by the IWK.

I doubled back and picked everyone else up from the dentist. I noticed what looked like a river running from the back of the van. Since it was fairly warm today and we had so much snow the last couple days I didn't give it much thought....BIG MISTAKE.

Victoria made out well at the dentist. No cavities and she doesn't need to be seen again for a year!! (The only YAY moment of the day!!)

I took the crew back to my parents and headed into the city. I hit Halifax just before rush hour...not fun...especially in a HUGE van from the late 90's.

Poor Ben was beside himself by the time we got there. He was in so much pain and had a mild temperature. He was screaming blue murder.

Over the next 5 hours we saw 4 ENTs (residents and the on call guy), 4 Plastic surgeons (again residents and the on call guy), The ER doctor, loads of nurses, someone from pain services, a radiologist and a lab tech since the nurses were having trouble getting blood work done on Ben. Ben also had to have a mild sedative so one of the surgeons could drain the collection next to his pin. After that Ben was taken for a CT. Then the waiting began.

To cut a long story very short the decision was made we could go home BUT Ben would be given two high dose of IV antibiotics, IV pain medications and some Tylenol for his fever. I was given a script for more oral antibiotics to be started overnight as well as prescription strength pain killers. Also I was to bring him back if he hadn't improved in the next two days. Like wise if he gets worse I am to go straight back in. Should he stop eating well or develops diarrhea from the medication he needs to go back for admission. We are to be reassessed by his surgeons on Monday. We will make a game plan then. Hopefully we can avoid readmission and more surgery. Should all go well we will be seen again in the clinic the end of the week.

When we finally were allowed to leave with our high dose antibiotics on hand, I paid my 9 bucks to get out of the parking garage and noticed a large pool around the van. I wrongfully ignored it. Turns out the brake line my husband had fixed has completely gone again. Wonderful. Something else to be fixed.

To top it off the weather driving home was horrid. Snow, rain, freezing rain and ice pellets depending on where you were from Halifax to here.

The boys are both asleep now and so is Victoria. We are staying at my parents for tonight in case I need to get Ben seen again through the night. I physically, emotionally and psychologically hurt. I think I will get some tea and head to bed. Hopefully some sleep will help me get over this horrid day.

Before and After

Ben will be 3 months old tomorrow. I can't help but think back over it all and realize how unbelievable and overwhelming it has been.

It is hard to truly comprehend exactly how fantastic and life changing this operation was for little Ben. So here they are the LONG awaited Before and after shots.

Ben the night before surgery:

And now here he is....taken 14 days post op...what a difference two weeks can make!!!

Hard to believe it is the same little boy! He is such a fighter!

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...

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.

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!

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:

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.