On Thursday night Clark began complaining that his leg hurt. It started around bedtime, so I carried him up the stairs to his bed. I knew this wasn’t a tactic to stay up later because this isn’t the first time he’s had pain in his legs. He went to sleep without trouble.
But the next morning his leg still hurt. He wouldn’t bend his knee, nor would he walk. Thankfully, it didn’t hurt when he was sitting, only when he stood or tried to walk. As the morning went on, the pain continued.
It is very common for patients with hemophilia to have joint bleeds. Basically, this is like a bruise that won’t stop bleeding into the space of a joint. Joint bleeds need to be treated seriously because without immediate treatment, the blood will slowly break down the cartilage near the joint. This will cause long-term problems such as painful movement and arthritis. It’s not deadly, but it is a concern to treat seriously. Clark has never had a joint bleed before, so we weren’t sure exactly what to look for.
We decided that the best thing to do was to call hematology. Hematology agreed that pain preventing Clark from walking and bending his knee was a potential indicator — better to be safe than sorry. Clark was immediately scheduled to go in to hematology at 1pm on the same day. They did a full ultrasound on both of his knees, as well as his hips. No bleeding! Good news. Clark’s pain had since subsided, and it is possible that this was just growing pain.
Since Clark, Eve, and I were already at the hematology clinic, we decided to tack on Clark’s annual visit. This included another CBC, general education, and a visit with physical therapy.
We have also enrolled Eve and Clark in a hemophilia study. This is an anonymous study to help doctors understand hemophilia better. Eve does not have hemophilia, but this test will be able to tell if she is a genetic carrier. While we were there, they did a blood test on both kids to find out what gene the hemophilia is on. (As a reminder, Connor has already been tested and does not have hemophilia, so he does not have the gene. He won’t be participating in the study.) It’s not easy watching your babies get poked for a blood draw, but I think it is very important to help the medical community.
Things took a turn as I was driving home; Patrick called me. For the record: I don’t talk on my phone while I drive, so I knew this must be important. He knew I was on the road and wouldn’t call me unless it was absolutely necessary. And it was absolutely necessary. Patrick told me to turn around and head back to the hospital. He’d just spoken with the doctors, and Clark needed a blood transfusion because his hemoglobin was at 5.5 (normal is 12).
UCSF has a Children’s Emergency Room — as in, children only. I love this. The doctors and nurses are specialized for these tiny, fragile humans. They know how to get an IV into his tiny veins. Most nurses that primarily deal with adults have a difficult time getting an IV in Clark. By “difficult” I mean that they have had zero success. There is also no waiting room at the Children’s ER. Clark was admitted, sent to triage to check his vitals, and had a room within 10 minutes.
Shortly after, Patrick and Connor met us at the hospital. Being in the hospital environment with three kids can be a challenge, but it was nice to have Patrick’s support. This was Clark’s first blood transfusion since his BMT two-and-a-half years ago. Unfortunately, Connor must have caught a 24-hour tummy bug, because he started throwing up while we were all together. Conveniently, the room was full of vomit bags and he was otherwise acting and feeling completely normal. Patrick was able to stay until midnight to make sure there was a plan for Clark. He wanted to stay longer, but the other kids needed to get some sleep in their own beds.
This was a long day. After we arrived at ER, Clark had an IV put in. They did another CBC, more tests, and checked his blood type so they could order his unit of blood. Fortunately, despite all of the waiting, Clark was able to watch TV (with lots of kid-friendly movies) and stay cozy in his bed. He stayed awake until after 2am, by which time Clark was admitted to the hospital in the Hematology/Oncology Unit. Clark was in a surprisingly great mood all night, right up until he passed out from exhaustion.
A red blood cell transfusion started at 4am and went for 3 hours. Thankfully we were both sound asleep for this.