Friday I took her to her 6 month check-up. She was perfect in every way- 19.7 pounds, 26 inches....off the charts for both. I expressed concern about a couple little bruises that I noticed and how she seems to bleed alot for a tiny little scratch (remember all those scratches on her face). After her 4 month shots, it took me 2 hours to get the spot to stop bleeding. Called Dr. who assured me all was ok, "They must have hit a vessel." So, I wanted some answers! Maybe she was anemic? Dr. Davis suggested that I get tested for Von Willebrand's Disease. If I have it, then we would proceed with testing the baby was the plan. Nurse came in and gave her two shots.
By the time we got home there was blood every where. I applied direct pressure. It seemed to stop, she feel asleep and I took her to Laura. The plan was for me to come into work for just a little while to place a vote and then go back home. We had plans to attend a Gala on Friday night. She slept for the 2 hours I was gone. When I picked her up there was no sign of blood and we went home. In the car ride home, she woke up and started playing in her seat...kicking her little legs. By the time we got home, she was covered in blood again. I could not get it to stop again. At 4 I called the Dr.'s office and insisted to be seen, this could not be normal. Nurse called on call dr. who told us to get straight to the ER at Children's Methodist. We were seen right away.
Every nurse in the ER tried to get the bleeding to stop to no avail. ER Dr. finally felt it necessary to start an IV. This is the point that Michael and I lost it. We can't get a tiny needle hole to stop bleeding and now you are going to put in a huge needle??? Dr. assured us it was necessary to administer meds to stop the bleeding and to draw blood rather than poking her over and over. Two nurses came in and held her down. They tried in her right arm first. This was by far the worst thing that I have ever experienced. She never cries....she was screaming at the top of her lungs. She was scared and in pain and I could not do anything about it. Michael was by her trying to comfort her and I was a mess in the corner. The nurse told me to leave, she thought I was about to faint. There was no way I was leaving. They could not get the IV started in her right arm so they moved to her left arm. By this time I am sobbing, Michael is visibly frustrated and fussing at the nurses. Finally this time they got it in. They then began to draw 6 viles of blood.
Then we waited and waited. Camy took a little nap but it is not easy to sleep in an ER. Bright lights, screaming children and a nurse coming in every 15 minutes to check vitals. First round of results showed an abnormality in her platelets but everything else was normal. At this point, they still have not stopped the bleeding in her leg. We continued to wait. At 3am Dr. said that if the bleeding did not stop in 15 minutes we would be admitted to the hospital. One of the nurses was a medic in the army and told us about a trick they used in the field to stop bleeding. Basically, they applied derabond (same stuff I had on my c-section). Dr. agreed to let him try and thankfully that finally worked. By this time, we were praying the meds through her IV and an oral med she was given would start her clotting. The leg was stopped but now they had to remove the IV and see if that bled. Luckily, it did not.
By this time, the next round of tests were back. The ER Dr. explained to us that blood tests of this nature are so specific and detailed that she did not fully understand them herself. It would take a hematologist to decipher the results and make a diagnosis. The ER Dr. noted that in the 5 hour test her blood eventually clotted when mixed with "normal" blood. This usually indicates a missing factor.
We left emotionally and physically drained and with more questions than answers. But Camy was coming home with us and she was not bleeding and in that moment that is all that we cared about. She went home on a blood clotting med. The medication tore up her tummy and gave her terrible diarrhea. From Friday to Monday she lost 7 ounces.
We met with the Hematologist yesterday. I don't think I am emotionally ready to let my mind process how scared I was. When you step off the elevator to enter the Speciality Office, the sign reads: Pediatric Specialists for Hematology and Cancers. I lost it. I wanted to grab my baby and run in the other direction. MSW grabbed my hand and we walked in. Lots of paperwork. These offices are so different. There was no one else in there and everything is pres tine. We were called back 15 minutes prior to our actual appointment time. That never happens at the regular pediatrician. The nurses act more gingerly and everyone is very sympathetic. The nurse applied numbing cream to both arms. Both arms that are already so bruised and sore. Dr. Estrada came in and asked us 5 million questions and then he checked her out.
He explained to us that most of the tests they were running take a week to process. He wanted to see us back in one week and we would know more then. I could not leave that office until we ruled out a blood cancer. He never said anything about the C word but I needed to hear it. So, I fought back the tears as best as I could and asked the question that I never could imagine asking, "Can we rule out cancer...leukemia?" It was the most emotion he showed through the whole appointment. He smiled and said this baby is very healthy. She does not have cancer. In that moment I cried...happy tears....tears of relief. My mind can handle anything else but that!
At this point we still have alot of questions. He did tell us that she has abnormal blood results and is certain that she has some type of blood disorder. Figuring out which one is where we are at right now. Michael and I both felt that he was leaning towards Von Willebrand's. They are specifically testing for that and we should have those results on Monday. He feels that whatever it is, is hereditary. I find solice in knowing that one or both of us have had this for 35 years and have not known. It gives me hope that this will not drastically change her life.
He also took her off the meds which we were extremely grateful for. Her tummy is returning to normal and other than some bruising and the shot area on her leg she is her normal self. Happy, laughing and smiling. We only have to administer in case she starts bleeding.
Monday will bring a new set of challenges. He prepared us for her having more blood work done and we may get a preliminary diagnosis. Prayers are appreciated, specifically that she stops bleeding after they prick her and that the diagnosis is as mild as it can possibly be.
We have been overwhelmed with the love and support. I am doing my best to return phone calls and texts. Thankfully, I only have 3 more days at work until I am off for the whole summer. This is a blessing that I will be able to devote my time to learning as much as I can about her condition and research the best possible management system available.
