Hospital - day 2

Today, we had to head back to the hospital. Yesterday, the only doctor that we saw was the plastic surgeon who came shortly before 6pm. Today, we needed to see the ENT and anesthetist to confirm that they are comfortable with securing Maddy's airway and anesthetising her for surgery.

We had a routine orthopedic appointment in the morning so we went over to the hospital at noon. For these visits, we are actually in-patient (ie, Maddy has been admitted to the hospital) as that is the only way to have an appointment with the anesthetist - they don't run outpatient clinics. 

We didn't actually see the ENT, but she is familiar with Maddy's case as we have seen her many times as outpatient. She consulted directly with the plastic surgeon. The anesthetist came around 5:45pm and in summary, "she would be difficult to anesthetise, but if the surgery is important, we will do it". 

One issue that did come up was the supposed neck instability issues that the doctors were concerned about when Maddy was first born. The geneticist was the one who mentioned it, and the orthopedic doctors were less sure about whether or not such an instability existed. Since Maddy was discharged, her orthopedic doctors have not been concerned about the issue and say that her cervical spine looks fine. Today in my our morning orthopedic appointment, I brought the issue up knowing that it may be important to formally address before surgery. As our orthopedic doctor practices out of a different hospital to the one that Maddy's cleft surgery will be at, he suggested we repeat the x-rays at her surgery hospital and get a formal assessment through them instead. 

So after two days of sitting around the hospital mostly waiting for doctors to show up just before 6pm, we are back there again tomorrow. We will first get the x-rays of Maddy's cervical spine and then wait for the orthopedic doctor's opinion on it. Hopefully all is stable there, as that would simplify things. If it all is stable, I wouldn't be surprised if they then ordered a bronchoscopy to formally assess the airways, which may be another day in the hospital.

The last two days have been frustratingly slow and boring for me and Maddy - the entire time, we are just hanging around, waiting for a doctor to show up. It's hard for Maddy to nap there, and when she does fall asleep, she is woken by loud noises. We have to be there the entire time as the doctors don't come at scheduled times - just when they can fit it in around their other duties. They come once a day, and if we are not there then, we have to wait until the following day. By the time that they came these past two days, it was the end of the day, so anything further that we needed to do must happen the following day. Thankfully Maddy has had home-leave each evening so we can come home, eat dinner and sleep in our own beds. 

We still do not know when surgery will be, or even IF it will be soon. There are a lot of issues and now doctors from four different disciplines (plastic, ENT, anesthetist and orthopedic) need to sit down and agree on what is best. Whether it is worth the risk to do the surgery now. I was thinking that surgery may be in the next week or two but after today, I think it may take that long for them to decide IF they will be doing the surgery. 

Please keep us in your thoughts and prayers over the next few days - we really appreciate it :)

Someone changed the sign on Maddy's bed ;)