Updated: Oct 27, 2018
Thursday, October 26, 2000 & Friday, October 27, 2000
The past couple of days have been very tiring for me and very stressful for Mommy and Daddy. Today was especially hard on me. The doctors didn’t give me enough of a break on the ventilator, and I was not keeping my oxygen and breathing levels at acceptable rates. Even though they put me back on the ventilator yesterday, they didn’t really give me a rest because the settings were very low and still required me to work a lot on my own. Today I had several apnea episodes (quit breathing for a second), so they upped my ventilator setting to give me a rest. My nurses said that they don’t usually have trach kids as small as me and the doctors probably got aggressive with getting me off the vent but forgot that even though I have a trach, I’m still a preemie. I have been keeping my milk down a little better, but still have some catching up to do.
The ophthalmologist specialists were called on to check me out because my left eye was looking a little funny. Daddy was actually the first person that noticed and asked the doctors to check it out. At first, they didn’t think that anything looked wrong, but after they caught me with my eyes open, they saw what Daddy was talking about. Dermoid cysts on the eyes are commonly associated with Goldenhar Syndrome.
After checking me out, the ophthalmologists said that I do have a dermoid cyst in the lower eyelid of my left eye. It is purely a cosmetic issue at this point unless it starts to grow over my pupil. Someday when I am a little older, the doctors can remove it with a laser. They will probably remove it at the same time that I have another corrective surgery like cleft palate repair.
The eye exam I got was really creepy for Mommy. The doctors had to insert a clamp to keep my eyes open, and then they inserted a tool behind my upper eyelid to move my pupil up. Mommy was sorry about leaving me, but she had to step out of the room for a few seconds. Even the nurses say they can barely help with those eye exams!
After the eye exam stress, nurses had to put an IV in my foot for a blood transfusion. Mommy had to leave for that too! This was the second transfusion that I’ve had to increase the oxygen level in my platelets. It's a fairly common issue with preemies. The CO2 levels in my blood gas checks were also high today, which means that I’m not exhaling enough to breathe in fresh air.
Doctors thought they saw a spot on one of my lungs, so that was a bit of a scare this morning. Mommy was pretty worried. Thank goodness I don't have pneumonia!
I have officially outgrown my ortho board. My primary nurse has been calling ortho for the past two days to have them check me out. They took some X-rays of my spine and vertebrae, and one of the residents finally came by to talk. He said that I still need to grow a lot more and gain head control before they will be able to make any decision about my vertebrae. He agreed that I need a new brace. An orthotics technician came by tonight to start working on a new one for me. I am probably going to need several of these made over the next few months as fast as I’m growing! I now weigh 3 pounds 12 ounces.
Mommy and Daddy are hoping that the weekend is much quieter!