After we brought Emily home and tried to adjust to our new reality of life, I became very distant from family and friends. It wasn't that I didn't want or need support from them, I just couldn't bring myself to talk about what was going on. I forced myself to take a phone call from my best friend while lying in bed with Emily sleeping next to me. I hadn't really talked to her much about the specifics of things, and I just completely broke down and sobbed to her on the phone. I was so scared for her, so sad for her and didn't know how to deal with what was going on. I had family, friends, doctors giving me names and numbers of doctors and specialists. Particularly ones in Philadelphia. After we made contacts in NYC, for some reason I completely avoided making the call to a doctor in Philly, mainly because I didn't want to rehash the entire story. It was too raw, too emotional for me to talk about. So I never picked up the phone. I didn't want to drive 3 hours to PA on a weekly basis if we could go to NY. I just couldn't handle it.
Three days after we brought Emmy home, we went into the city to see the cornea specialist at Columbia. The pediatric doctor who saw her in the hospital was also there. Initially a few disorders were ruled out, including cataracts. But as we sat in the exam chair and the two doctors flipped through medical books trying to figure out what the hell was wrong with her I could feel the anxiety building up inside me. Ultimately, we got no definitive answer as to what the problem is or how we will need to correct it. Further testing would need to be done to give a correct diagnosis. We were told that they were not sure if she could see, or how well she will be able to see in the future, but one thing was pretty clear, she would most likely need to have cornea transplant surgery. I was numb, I couldn't put two words together to form any coherent thought, I just wanted to get out of that building and as far away from that office as I possibly could. Before we left, we were referred to a pediatric cornea specialist at Westchester Medical Center who would hopefully correctly diagnose her condition and perform the surgery which would need to be done within the next few months. Jason and I left the office without looking at or speaking to each other. We got into the elevator and I just began sobbing, holding Emily as tight as I could. There were no words to say at that moment.
I did the best I could to pull myself together when the elevator door opened and I was thrust back into the busy lobby of the Eye Institute. We walked out the door and back to the van in the parking garage without saying much. I got to the van, put Emily back in her car seat and kissed her cheek. Jason put the stroller in the back of the van and got in the drivers seat. The moment I closed my door, I completely fell apart. That was probably the lowest moment of my life. I don't think I have ever cried that hard before in my life. What originally started out as tears of sadness quickly turned to anger and panic. We needed to leave, I could not stare at the parking garage wall anymore. I screamed for Jason to get us out of here as fast as he could. It was like I couldn't breathe....just get us out of here - and NOW.
We called our families to meet at Jason's parents house so we could explain what we had been told. When we got there, we sat down at the table and just put it all out there on the table. No one wanted to believe what we were saying, but we all knew it was reality.
When Emily was 12 days old we took her to see the Geneticist who ordered some blood work and urine tests, to which we have not yet received any results. It's very unlikely that there is any underlying genetic or metabolic reason for what has happened, so these tests are basically to just rule everything out.
Comic relief....While we were there, we were left alone with Emily for a little while to try and collect a urine sample. Instead Emily pooped like she had never pooped before. There was yellow baby poop everywhere, all over her, her clothes, the diaper changing pad and the floor of the office where we were changing her. We ALMOST ran out of wipes, which would have been disastrous. And the kicker is that she peed really good into the collection bag, but all the poop contaminated it. Damn poop! Now we had to start all over. Do you know how hard it is to stick a urine collection bag over a newborn baby girls' girlie parts and actually get something to stay inside? Babies that little don't sit up, they lay down. When they lay down, all the pee just goes down into the diaper, it doesn't go sideways into a bag...that would be defying gravity. Who the hell came up with that form of urine collection for a 1 week old? Boys...ok probably not a problem...but girls? Not going to work. We were sent home with a whole bunch of collection bags, we needed to collect more at home and bring it to the lab when we got enough for the testing. Well that didn't go over well either. We ran out of bags because they kept leaking pee all over the place, so I had to get more bags from LabCorp. What a freakin pain in the ass that was. We had to freeze her pee and add tiny little bits at a time into the container because we could never get a full bag. Once all the bags were gone I brought her pee-cicle to the lab and they sent it to The Mayo Clinic to be analyzed. Now the wait begins to get the results, with fingers crossed for only good news.
When we finally met with the cornea specialist at Westchester, he examined her and pretty much came to the same conclusion as the previous doctors, that further testing would need to be done to be 100% sure of what is wrong. He narrowed it down to one of a couple possibilities. Glaucoma, C.H.E.D. or Peters Anomaly. He doesn't think it's Glaucoma but he can't rule it out just yet because getting an accurate eye pressure reading on an infant is difficult. We knew from the first doctor we saw that Peters Anomaly seems to be unlikely because there are usually other indications of that disorder which don't seem to be present in Emily, ie...heart or lung problems. So Dr. Zaidman seems to think it is CHED, which stands for Congenital Hereditary Endothelial Dystrophy. The course of treatment for this would be the cornea transplant surgery. We had to pretty much come to terms with the fact that she will need to have the transplant surgery, we want her to be able to see and if this is what needs to be done, then we will get through it. We will take one step at a time and move forward with treatment as we go along. Here is what we knew would happen. In order for the doctor to fully examine her and get a true diagnosis, he would need to put her under anesthesia in the operating room. This is when he would be able to do a retina scan, take accurate readings of the pressure in her eyes to rule out Glaucoma, and run other tests. That was to be done when she was about 5-6 weeks old so that she can tolerate the anesthesia better. Once this exam is done we would know for sure what is wrong and could then further discuss a treatment plan. In the event that it is Glaucoma, he had given her an eye drop prescription that will prevent the pressure in her eyes from getting worse. She needed to stop using the drops about 4-5 days before the exam under anesthesia so an accurate reading can be taken. If she does need to have the surgery, it would be done one eye at a time. The first eye would be done when she is about 8-9 weeks old, and the second eye about 4-6 weeks later. At about 8-9 weeks is when her eye will best be able to accept the donor cornea. Any earlier than that and the risk of rejecting the transplant is higher. The second eye will be done after the first eye has had time to heal.
After the surgery has been done, she would need alot of eye drops, follow up doctors visits and would probably need to wear glasses. But if she can see we will do whatever it takes. We just want her to be able to see the world and the people that love her.
It was a tough pill to swallow, but we left his office with a feeling of hope. A feeling that maybe she will be ok in time. And that is all we can ask for, for there to always be hope for her.
No comments:
Post a Comment