Wednesday, December 06, 2000
Today was really busy, and we're pretty exhausted!
Eating - Bottle Update
Speech Therapy was working with me when Mommy arrived. The therapist helped Mommy use the Haberman bottle and worked on oral stimulation. I sucked pretty well on the bottle but not enough to get any formula. Since I tried so hard, they stuck my pacifier in formula so that I could at least get a little reward for all of my hard work.
Mommy inserted my “Core Pack” NG-feeding tube for the first time today. She wasn’t very comfortable doing it. When she started pushing it down my nose, it got stuck. A nurse helped her get it into the right spot. Once that was resolved, Mommy got it all the way down to my tummy. The nurse then showed Mommy how to check that it’s in the right place and secure it on my face with tape.
Mommy can’t wait to see Daddy learn this new skill! The good news is that the tube only has to be replaced every 2-4 weeks, unless I pull it out (which I have been known to do several times).
Ventilator & Oxygen Update
I did really well on my ventilator wean today and was even off the trach mask for about an hour while Mommy held me. I have a special “nose” that goes on my trach when I'm not on the trach mask. The mask is hooked up to a humidifier and oxygen, both of which I still need most of the time. I also wore my “nose” last night when Daddy gave me a bath. We had a great time, and I actually enjoyed bath time for a change.
The nurses changed my feedings from every three hours to every four hours to make it easier for when I go home. They've also worked with respiratory therapists to set up a daily vent schedule. The plan is to be off the ventilator from 6:00 a.m. to 2:30 p.m, on the vent from 2:30 p.m. to 5:30 p.m., off the vent from 5:30 p.m. to 10:00 p.m., and back on the vent for the rest of the night. That means that my bedtime is 10:00 p.m., right after my feeding.
Equipment & Training Update
The nurses and respiratory therapists are really working hard to get Mommy and Daddy trained on my equipment. A Rep from MedEquip talked with Mommy and Daddy tonight. MedEquip will be supplying my durable medical equipment for home. A Rep is visiting our house on Friday to do an inspection. They have to make sure that our house meets certain standards to run all of my equipment.
Mommy met with a dietician from the nephrology group this afternoon. She doesn’t think my formula needs to be changed. Foods that I should avoid overeating as I grow include meats and dairy products. Anything with a lot of protein makes my kidney work harder. The dietician recommends I stay on formula for two years instead of switching to milk when I turn one.
Neurosurgery came by to talk to chat this afternoon. The doctor said my brain looks anatomically normal in size and there are no indications of a stroke or excess bleeding. He said my spinal cord looks good, and he doesn't see any need for more follow-up. Mommy talked to him for a long time about other neuro issues she's read about with Goldenhar. She really appreciated how much time the neurosurgeon spent talking with her.
Orthopedics hasn't stopped by since my last scan. The latest report showed I have hemi- vertebrae, which means that my vertebrae (horizontally) are uneven. This puts me at increased risk for scoliosis as I grow, and it's something the surgeon will monitor.
Craniofacial Reconstruction Update
Just when things were starting to settle down, the craniofacial surgeon came by with CT scans of my jaw. The pictures were re-imaged in 3D and really neat to look at. The doctor showed Mommy and Daddy pictures of my right side and how my left side is different. Basically, I'm missing some joints and bones on my left side. This will cause my jaw to grow out unevenly, so it will probably curve to the left.
The craniofacial surgeon can't say how severe these anomalies will be as I grow. He wants to see me in three months to evaluate my cleft palate, which will be the first reconstructive surgery I have (probably won’t happen until I’m 12-18 months old).
There's nothing that can be done now to straighten my jaw. They can graft a rib bone to replace missing structures on my left side, but they can't force it to grow. I'm probably looking at many jaw reconstruction surgeries as I grow.
Mommy talked to our attorney this evening. She said we have to show that I require a night nurse to monitor my trach and vent. If nursing coverage is denied, I will stay in the hospital indefinitely. She asked Mommy to write out a list of everything that's involved with my medical care and fax it to her. She will review it and help us write a letter.