Jumping Through Hoops, Pulling Strings, and Providence

SORRY BLOGGER WONT SAVE MY PARAGRAPH SPACING- I'LL TRY AGAIN LATER First, a recap of Leo's brachial plexus injury. If you already know this skip to where it says *END OF RECAP* :)

At birth, we had to wait for NICU nurses to come suction his airway as he had passed meconium in the womb. Unfortunately, the Dr. and nurse did not call these nurses in time, so they had me stop pushing with his head halfway out (yes, I'd had the epidural) for a few MINUTES, so once the nurses finally got in there, it was a mad scramble to pull, push and maneuver poor Leo out, who yes, was also a whopping 9 lbs 11 oz. The fact that they were no longer using the force of my contractions to push him out, but instead just yanking on him, couldn't have helped in light of his size. Whatever the case, the bundle of nerves at his shoulder, called the brachial plexus was injured during the delivery.

For the first couple months his left arm was completely limp, and we had to pin his shirt up to keep the arm from slipping behind his body or getting bent under/behind his body. His fingers were always able to flex and grasp, however, so that was a good sign. I have been taking him to occupational therapy every week at Childrens since he was 2 weeks old. At two months, he suddenly began to regain some movement. At 3 months we took him to see the neurologist. He was encouraged by the movement he saw at that point, and said that if he wasn't lifting his arm above his shoulder line by 6 months to have him seen by the hand surgeon, just to get an opinion on how he seemed. The bad thing is, this neurologist, who specialized in the brachial plexus injury and even had a brachial plexus clinic at one time, was leaving Childrens. At 6 months, I brought up to his OT about seeing the hand surgeon. She wasn't sure about it and seemed to me be saying that because his movement was so much better it wasn't necessary. So I didn't make an appointment. But then a few months later we discussed it, because she felt he was plateauing with therapy and the physical therapists at the hand surgeon who examine him first would have suggestions on what to work on more specifically in therapy.

*END OF RECAP*

By the time we got in to see the hand surgeon, Leo was now almost one year old. He was examined first by a physical therapist, then a muscle specialist, then by our hand surgeon. Robbie and I were shocked to hear that he strongly recommended surgery. We also learned that Leo had pretty much regained all nerve function that he could on his own, and that any further improvement would only be gained through surgery and other treatments. The surgeon was bothered that we had seemed to have slipped through the cracks with Dr. J the neurologist leaving, as surgery for this injury is best done within the first year for optimal nerve regrowth/healing. We were already pushing 1. Dr. M personally called the neurologist at Childrens and got us in within days to see him when he was booked for months, because he asked for it personally, and the neurologist rearranged his schedule to get him in. The neurologist performed an EMG to test muscle function, and did a nerve conduction test. We learned that all of his nerves on the left arm do have function, (which is great b/c it means they are not fully severed) though at much lower levels than normal. Only about 30-40%. As a result, the muscles are very imbalanced and stronger muscles are way overcompensating for the weaker muscles (and they are all much weaker than "normal" on the left as well) so he has some turning in of his arm and hand that over time will lead to his body actually growing in a malformed way. He has found ways to work around the weaknesses, for example using his trunk muscles to lift his arm instead of his shoulder, but that is causing his scapula to stick out funny and other muscles to tighten and shorten. There are certain movements he can't do, like reaching behind, or even reaching in to his waist on that side, which as a baby no one really notices to look at him.

People will say, what do you mean, his left arm seems fine, I see it moving. Well, yes, but there are limitations he still has that as a baby might not matter, but as he gets older they will. He will have trouble with things like pulling up his pants after going to the bathroom, playing baseball or basketball, etc. Because he does have function in all the nerves, it is likely that the reason he hasn't fully recovered movement is that often there is scar tissue along the nerves and during surgery they would simple clear that away and many times that would restore a lot of function, up to 20-25%. That is the best case scenario, according to the surgeon, (as opposed to the other 2 scenarios which include complete or partial tears that would have to be repaired) and all signs are pointing to that being the case. In addition, the neurologist suggested botox injections into the stronger muscles to allow the weaker ones to develop. He said that once the muscle imbalance becomes habit in childhood, it is very very hard to correct, so the combination of these two procedures (surgery & botox) could be very helpful. We asked lots and lots of questions and are starting to feel more comfortable with our understanding of the situation and how surgery could help.

So Robbie and I prayed about it, talked about it, asked many questions, and finally decided to go ahead with the surgery. When we met with the Dr. again, he had warned us that although he was going to clear his schedule for us, with a 6 hour surgery, it is hard to mesh schedules with 3 different specialists, so the surgery may be 4-6 weeks out. they also said it may take a week or so to schedule the date, as they try to coordinate all the Dr's schedules. So THREE weeks later, I couldn't wait any longer and called to see what was going on. His secretary was surprised that Loni, the scheduler, hadn't been in touch yet. She transferred me over to her and I left a message. Well Loni did not call me back for two, three days. I called again, and left a calm but very um, crisp message about why I was so frustrated with this situation. The secretary called me back, very apologetic, and transferred me to Loni's manager. Now Loni was on vacation (she wasn;t when I first called). Her manager agreed that even if she was still coordinating schedules and didn't have anything new to tell me, she of course should have returnded my calls at least! So now I was transferred to the woman who was filling in for Loni. She called me back later that same day and had a date for me- late July. First of all, how come once I press all of a sudden they can come up with a date, and if Loni had done her job sooner would we have a date better than July for a case which according to the surgeon was time sensitive?? I was sick to my stomach. We had come to peace with our decision. Now every day that we didn't have a date and things didn't seem so urgent as they had made them out to be, we had more time to second guess. Plus, my chiropracter was advocating that she thought she could really help with his injury by doing chiropractic adjustments and even did two for free to show me what it would be like. So now i am confused and frustrated. I was also blaming myself for not being a better advocate, and although by my standards I had been demanding, I was feeling hugely responsible for not getting Leo in before he turned one and for letting things drag out so long with the scheduling.

Then yesterday at my Aunt's, she happened to ask how Leo was doing. When I told her what was up, I somewhere must have mentioned Dr. M's name. The name was familiar as the nurse at BA where she is the principal was his wife! We thought it was a stretch at first, but looking up in the white pages and matching it to the BA directory confirmed our suspicions. My AUnt said that she knew his wife would be super willing to help out. So this morning my Aunt talked to her and she had her husband (the surgeon) paged right away! Her husband told her that he would do everything he could to personally make the calls and try to get an earlier date (this is a serious personal favor- this is not how it normally works). Well a few phone calls back and forth ensued and then his scheduler called (well, the one covering for Loni). I don't know if she was trying to make me feel bad, but she said that she would try to make some calls but that it would mean bumping someone else. I said maybe they could bump someone less time-sensitive. She said well unfortunately, with the surgeon, they are all time sensitive. I did feel bad, but I didn't back down or say well then forget it, because Leo has slipped through the cracks here on several things, and this surgery was supposed to take place with the best odds within the first year of his life. I also felt like part of why we were in this position was because I had been too nice and polite. She called back just this afternoon and - we have May 24th!!

Mixed feelings because I'm not exactly thrilled that he is getting a six hour surgery, but I am happy that my baby is not getting lost in the shuffle and that we are doing our best to give him the best odds possible with this. I have taken on a lot of guilt over this, which I need to work on giving over to God. Although Robbie has of course been present for all the "big" visits- the neurologists, the surgeon, and we have made the big decisions together, it has been me at every appointment, so it's me with all the necessary knowledge of the situation and his progress, me making phone calls and me working with him on the exercises. So when I found out he should have been in sooner than one year, and when we're not getting phone calls with a date, I feel like it is ultimately only ME responsible. I know I need to ease up on myself, but I also know that if I don't advocate for him, who will?

In any case, I am so incredibly grateful that the date was moved up by months. I will continue to pray that we follow God's will for our little Leo, and make sure that we take care of him to the best of our abilities. Please keep us in your prayers come May 24th!