Finally!

Well he is finally out! What was supposed to only be 70 minutes turned into 3.5 hours!!!!!

GI said things looked okay but his stomach was raw and she still suspects EoE in addition to FPIES.  We will have to hold off on any new food trials as he may be reacting to something we are currently considering safe. We will have to wait for the results of the biopsies to find out if he has EoE and to see if we can determine why his labs are out of wack and he is so anemic.

Dentistry was considered a HUGE success. His malformed tooth was able to be saved. It was built up and capped to protect the area that came in without enamel. 

Ben is not very comfy but we hope to be going home soon. 

Thanks for the thoughts and prayers!

Surgery Day again...

Well here we go again. I must admit this is not something I ever feel prepared for. This time has really sucked. Ben had to stop all solids and go on clear liquids only for 24 hours. Upper and lower GI scopes and depending on how bad his malformed tooth actually is either a repair or removal.

I am sure in theory that sounds okay. With Ben's FPIES he cannot have ANY meat or we have a vomit to shock reaction. So no Chicken broth. No Jello (or anything else containing gelatin). So we were pretty limited in what we could give him. Water seemed to be the only thing he would take any of. He also had to stop his medications before surgery this time. That did not go well.

About an hour after arriving at the IWK his reflux was acting up and he was feeling pretty sick. He ended up throwing up twice before surgery. 

We have met with anesthesia, GI and dentistry and we are all ready to go...I think... 

Surgery Day....

So today was surgery day. We stayed last night at Ronald MacDonald house to make things easier. Somehow this didn't make us feel any more prepared. Surgery days are harder now, not that they were ever easy. Ben now understands that something is up on these days even if he doesn't really understand what is going to happen.

He was such a brave boy and walked himself back to surgery with his giraffe named Bear and his doll named Baby.

The recovery room was a nightmare this time. Ben was angry and in pain and screamed for all he was worth. We spent much of an hour passing him back and forth between Ashley and myself and in the end he settled when Harry came in to watch cartoons with him.

We are settle up in 771 and hopefully Ben will continue to eat and drink so we can get out of here. So far so good, fingers crossed it continues!

Here we go....

Where do I start?

We have so much going on in the upcoming weeks I am not sure where to start really.  We are getting ready for Ben's next group of surgeries, and there is so much to do and so many appointments. Here is a quick recap of the last year:

• Ben born December 15, 2011 with Pierre Robin Sequence.
• Discharged from the NICU December 25, 2011
• Seen in the craniofacial clinic January 19, 2012. Diagnosis of failure to thrive and a severely compromised airway. Plan to readmit January 20, 2012 for NG tube and teaching.
• Readmitted January 20,2012 to PMU at the IWK. The severity of Ben's airway was really seen. The new plan was for a jaw distraction surgery once he had gained enough weight. We stayed on PMU for weeks and Ben had loads of tests prior to his surgery.
• Ben had his Bilateral mandibular osteogenisis surgery February 6 2012
• Ben was admitted to the PICU for 6 days after surgery until his swelling came down, he could be taken off the ventilator and his medications were in check.
• Ben was transferred to MSNU on February 11 2012.
• Ben developed a nasty post op infection that delayed discharge.
• We were finally discharged home February 21 2012.
• Ben battled the post op infection until the removal of the device April 11 2012. Still evidence of infection and placed on strong antibiotics.
• May 3 2012 Ben was readmitted to MSNU for investigation of the ongoing infection. Bone scan showed osteomyelitis. Scalp PICC line inserted. Home care and private nursing to assist me at home.
• Ping ponged back and forth from the IWK as Home care, private nurse and local hospital could not get blood return from the PICC line. Finally readmitted and stayed until antibiotics finished on June 9 2012.
• September follow up with ID seemed suggestive of the infection being cleared.
• Craniofacial clinic in July showed enough weight gain to consider palate repair. Follow up arranged for  October.
• August Ben's weight started to drop again. Took several weeks of playing with his reflux meds and fortified feeds to see any change.
• November visit to craniofacial and cleft palate clinic it was decided to book Ben for his palate surgery. 
• November 11 through to now Ben has been battling nasty fluid build up behind his eardrums. This has caused several infections. The left eardrum has perforated twice and the right eardrum has perforated once. We now see ENT weekly to have his ears suctioned and he is on long term antibiotic ear drops until tubes can be placed at the time of his palate repair.
• Hearing test December 13 2012 showed mild hearing loss in both ears. Worse on the left than the right. Fingers crossed the tube placement will help this.
• Plate surgery scheduled for January 21 2013.

So that takes us up to what is going on now. We will have loads of preadmission tests as well as regular clinics over the next 3 weeks. We are hopeful that Ashley can rearrange leave to be with us when Ben has his surgery. This brings me to my next point updates. I want to stress the following.

I will be posting on the blog as the main means of updates. We have so many family and friends and we want to thank you all for your love and support. We want to keep you all in the loop however it is hard to do so to each and everyone over the phone. We will once again be using the blog as our main means of updates. We will do our best to phone people as we can and we welcome anyone who wishes to call, email, text or whatever to do so. Please do not be offended if we do not get the chance to call. We will do our best to call as we can but depending on what else is going on it may not be easy. Also we have family that will be south, in the UK, on the other side of Canada or in the states. This means that sometimes the time difference works against us, especially when the medical staff need us at certain times for certain things. Please pass this blog along to those who may not know about it and still want updates. Please to feel free to check in here at anytime, I will also try to let you all know via facebook or twitter when an update is posted. Once again than you ALL for your thoughts, prayers, love and support. We appreciate each and everyone of you.

The link to the main page of the blog is:

http://pinkpointeshoes.blogspot.com/

feel free to share.

These next few weeks to the surgery will fly by. Lets hope the weather cooperates and that everything goes according to plan. Although if history has shown me anything it is that it  never does.

Arm Immobilizers

This is a post for all the Pierre Robin Sequence parents out there as well as craniofacial parents, what arm immobilizers did you like best post surgery??

We are looking at getting some and I am so torn between the Snuggle Wraps and the Pedi Wraps. I think I am leaning more towards the Pedi Wraps but I don't know!!

Help anyone????

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...

I am not even sure where to begin really. For the past two months things have been quiet. Ben seemed to be doing much better and we were able to take some small day trips for a little holiday. This week things slowly reverted to the tangled mess of appointments that our life had been a few month ago.

Tuesday I had calls from nearly every department at the IWK children's hospital. We are gearing up to be at that place every few days again. To be honest this was to be expected. The ramp up to the next surgeries was to start in the fall and with that comes all the appointments to prepare. What I did not expect was it to all come at once.

Yesterday we had a trip to see Dr. H in opthamology (please forgive me I cannot pronounce her name and at the moment I cannot think how to spell it either...her first name is Santa...that I can remember lol). Poor kid went through a long dawn out series of exams, eye drops and lights. His eyes had to be dilated. Things, for now, look normal. He will be seen back in two months ( around mid October) to be rechecked prior to surgery.

Ben will see the cleft palate team next month along with ENT, ID, plastics, and cardiology all at the IWK. He will be seen at least once a week by hearing and speech here in the valley.

Today Ben went to see Dr. Hilliard here in town. It was for a weight check and to investigate a new 'symptom' that has developed.

While Ben has surpassed all his normal motor milestones, his speech is (understandably) delayed. He does show good signs of hearing, which should mean hearing and speech will focus mostly on helping to develop appropriate and understandable speech post repair. His length has really caught up to where it should be, as has his head circumference. His weight however has decided to plateau yet again! I am getting so frustrated. At 8 1/2 months old he weights 7.15 Kg (15 pounds 12 ounces).

Part of the issue is that he is so active. He is burning more calories than before and hasn't greatly increased what he has taken in. The doctor isn't sure where to go from here really. We are going to tried fortified feeds at bedtime, through the night and first thing in the morning when the volume of what he is taking is down as he is sleeping longer.

Lets hope this works and it gets Benny Bean back on track. A problem with weight may cause a delay in the surgery as our plastics guy is pretty picky on how much he should gain prior to the palate surgery.

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.

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...

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.