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!

Home!!!

We have finally made it home!

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

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

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

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

However for now we get to go home!

31 Days....

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

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

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

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

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

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

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

I think time has actually stopped!

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

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

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

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

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

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

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

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

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

Road Block

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

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

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

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

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

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

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!

Bye Bye PICU

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

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