Are we there yet?

Almost...I think we have found a new peace. If all goes well, we will find out on Monday with certainty, if Dr. 3 is our guy. He is REALLY busy, he had 5 cranial vault surgeries just this week, but he is checking his current schedule of surgeries and what can be rearranged and also checking with his neurosurgeon and seeing if they can work together to get John in quickly. The whole process has been so much easier with him in comparison to Dr. 1, and the communication level can't even be compared. Dr. 3 has been so easy to get in touch with, returning emails within 24 hours with absolute answers to our questions. Tate and I also felt more confident in his experience level with craniosynostosis syndromes, his knowledge and his complete and thorough thought process with regard to John's situation. I must admit it is nerve-wracking when all 3 doctors propose 3 different approaches. It is scary to make the "decision", even when the choice is obvious.

The sleep study went well. My only complaint is that they didn't just let us sleep ;). Tate, John and I arrived at Children's at 7pm (which is John's regular bedtime). It took forever to get set up, so we didn't send Tate home and get John to bed until after 9pm (sheez).


John did really well with all the leads that were attached to him, we think he should be a mummy for Halloween this year. The only things that set him off were the two cannulas (nose pieces). But after 10-15 minutes he settled down and was fine and fell asleep rather quickly. I on the other hand couldn't take my eyes off the oxygen saturation monitors for a few hours trying to guess what the results would be. Mind you, I know nothing what these numbers mean, but it didn't stop me from worrying. I finally drifted off, and was woken by my screaming child. I jumped up and couldn't calm him down, totally freaking out that he was in pain...until I realized he had soaked through his diaper. The technician came in and helped me to change John's diaper and pjs. He settled down quickly and got back to sleep almost instantly. John woke again at 4:30, but had just gotten tangled up in everything, once we got him straightened out, he slept great until 5:30 when the technician came in the room, turned on the bright lights and woke us up for the day. I know I could have taken a couple more hours and I believe John could have slept a bit longer, but this is how they do it. It would have been nice if they would have let us try as Dr. 1 had set up a couple of appointments for us. We were told to stick around so that an ENT and an ophthalmologist could examine John prior to us leaving. At 7, we still had no visitors, so I called Dr. 1's coordinator. She said she would figure it out for us. Well, neither of the doctors showed up...but the ENT was willing to squeeze us in to her early morning appointments. So John and I truck across campus at 7:45, we didn't get seen until 9:10...my kid had been awake since 5:30, he was CRAZY! He is very cute when he is exhausted, but this huge prego girl has a hard time keeping up with the little Tasmanian devil. So we meet the ENT and she was aggressive, I mean aggressive. The first thing she says to me is we need to do a tonsillectomy and adenoidectomy prior to the cranial decompression surgery. WHAT!?! You people want to put this kid through so much in a few short months. So she explains that John has a mild to moderate case of sleep apnea...this is quite common in children with midface hypoplasia. I was exhausted, so I asked her to write down everything so I could process it later, she was a tad put out until she remembered she had a medical student at her disposal and had him do it. Thank you Mr. Medical Student.

So John and I headed home and slept for a good 3 hours...after waking I emailed Dr. 3 to get his perceptions on the initial sleep study results and the proposed treatment by the ENT. I also call Dr. 1's coordinator to find out when we would get any preliminary results and his thoughts. After hearing from both, Tate and I both feel we are making the correct decision with Dr. 3. He doesn't want to delay the cranial surgery any more than it already has been. He wants to see the complete results from the study, but he feels the ICP is a bigger issue at this point and knowing the results, the anesthesiologist will be able to protect John's airway for the surgery. After John recovers from the cranial surgery we will revisit the tonsillectomy...the adenoids are important for speech development, so Dr. 3 would like to retain these for as long as possible.

It is all a lot to take in and Tate and I are both still working on that. I have weird emotions feeling this "fight" might be coming to an end. As frustrating as it is/was, it is an amazing distraction from what is actually going on and the gravity of it all. We just want to get through this as quickly and safely as possible and let John be a little boy.

I am hoping to get up some little boy posts in the next few days...I will try my best. Sorry for the delay on this post. After getting through this week, I came down with either a stomach bug or a bit of food poisoning. I have never been so grateful to have easy pregnancies. For those of you with morning sickness, I am sorry, I am very sorry. I don't think I would ever get pregnant again if I were to vomit (sorry for the graphic detail) this much on a regular basis. I love my child(ren) more than life itself, but I really can't handle puking. Anyway, I was incredibly weak this weekend and had a hard time even picking John up, he felt as if he weighed at least 80 pounds. Thank goodness Tate was home for the weekend. The boys had a lot of fun time together. Thank you Dill.