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!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!
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