So Konnor had his palatal fistula repair on August 21. Once they got him back to surgery they found that on top of the big fistula that was right in the center of his palate he also had a smaller fistula behind his front teeth. Well no wonder the poor kiddo couldn't make certain sounds and still had food coming out of his nose. Anywho, due to the 2 seperate fistulas and their locations the Dr. felt that in order to get the best repair he had to actually take the entire palate apart again and reconstruct the whole thing. BOOOO!!!! He said that Konnor's was the most extensive palate repair he had ever worked on. The good news was that he thought this second repair went VERY well and had every confidence that it would heal beautifully.
I have said a hundred times, I LOVE our surgeon and I LOVE our hospital. I have never had a bad experience there until this visit and it was just 2 specific nurses who still thinking about them makes me go grrrrrrrr! The first thing we have done with every surgery is tell every person who walks in the room from the Dr.'s, Nurses, Anesthesia, etc...., we talk to everyone about the fact that Konnor does not like strangers and he most especially does not like it when strangers try to pick him up. Besides the whole not liking strangers thing, we also practically beg to be in recovery immediately b/c we have worked so hard to establish our trust level with him. Don't get me wrong Konnor is securely attached to us and we have no concerns in that area, however, waking up in pain without us present has the real possibility of triggering some unpleasant memories for him. In the past this has not been an issue, but on this particular day we got a recovery room nurse who apparently thought she knew better. Just typing this makes me want to say GRRRRR again. They have always called us into recovery either when the Dr. was talking to us or within a couple minutes of him leaving. This day it took them 30 minutes after he left before they called us back and when we got back there this nurse was holding him and he was hiccuping b/c he had been sobbing so hard. Seriously the flames had to have been 10 feet high coming out of my head. I know my son and I KNOW he does not do that hiccup/sob scenario unless he is in real distress. He lunged for me immediately and grabbed me in a death grip that didn't let up for 4 days. I asked the nurse "did he come out swinging?" and she said with a smirk "yes, but we were fine." Seriously I am grinding my teeth right now I am still so mad about this incident. I didn't address this with her at the time, b/c my priority was Konnor and getting him settled, but I assure you that this has been addressed with the hospital. We also kind of butted heads with our night nurse, but I think that was just a normal nurse thinking that we are overreacting parents and not realizing that A) Mama is a nurse and B) this was not our first rodeo, I can name half the staff on the 10th floor so cut the crap and understand that if I am telling you there is a problem then there is a problem. Once she and I established a routine for pain meds/vitals and nausea medicine we all got along just fine. I have been a nurse for 10 years and am in no way saying your nurses are being malicious or that you should argue with them at every turn. What I am saying as both a nurse and Mama is that if your gut says something is not right then listen to it and push the issue. End of rant.
Needless to say I have a thing or two I would like to discuss with our recovery room nurse if I should ever run into her on the street. She just does not understand the trauma that she inflicted. I am not exaggerating when I say this, it was at least 4-5 days before I could be more than a foot away from Konnor. At least another week after that before I could get out of line of sight. I will honestly say that this was by leaps and bounds our hardest surgery yet. We really struggled the first few days home with getting food in him. The day after coming home he started running a low grade fever, had ice cream leaking out of his nose (yes total freak out occurred b/c we thought this meant he had a new fistula already) and he was vomiting. We finally figured out that Codeine is not his friend and once we stopped it he started eating a little better and stopped vomiting. All of these things were manageable. What we were really completely and totally unprepared for was his anger. It started in the hospital and he literally would not let me put him down. If Mark tried to even touch him kicking, scratching, hitting and pinching was the result. It took 3 of us to hold him down each time he needed vitals or meds and the nurse took a foot to the jaw at least once. Thankfully Konnor has a Papa who loves him unconditionally and understood that he just needed an outlet for his anger and confusion. Once we got home he warmed back up to Papa, but the generalized anger lasted for 2 very, very long weeks. I don't blame him for his anger. We have spent over a year telling him he would never be hungry again and here we are trying to fill up his little belly on liquids and soft foods. NOT happening. He was eating every hour trying to get full. He was mad! and he made sure we knew it by scratching/throwing/hitting everything in sight. We went for a 2 week follow up and got AWESOME news! Dr. said the repair looks perfect!! He also advanced him to a "anything that is not crispy or crunchy diet." As soon as we started getting his little belly full our tantrums significantly decreased. Dr. thinks that the occasional food coming out of his nose is from the alveolar clefts. Basically there is still 1-2 little holes where they reattached his gum line and until he has his bone graft he may occasionally have food leak. We see Dr. again 11/5 and he said that as long as everything still looks good we shouldn't need anymore surgery until between ages 8-11 when he would get his bone graft. YAY, YIPPPEEE, HOORAY!!!!!
That brings us to 6 weeks post-op. I had noticed he had a suture that hadn't dissolved so when we were in for a followup with the ENT I asked them to peek at it b/c I thought it was getting red. Long, long story short......not only did he have a suture that didn't dissolve, but he had developed an abscess where the suture was located. Thankfully our surgeon decided to try treating him with outpatient antibiotics first. The antibiotics worked and once the swelling went down the suture fell out. At this point all looks beautiful inside his perfect little mouth. I know your eyes are probably starting to cross right about now so I will update you on what else has been happening the last few months in a later post. Thank you to everyone who has continued to pray for our little man.
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