Normally when I get home, Niki walks up and greets me at the doorway. Well, this time she didn't -- she just stood there and stared at me. I thought it was odd, but John said Niki had been cranky for the past 1/2 hour. Her eyelashes were still moist with telltale tears so I paid little mind to the fact that she didn't walk up to me when I came home.
Niki occasionally goes through bouts of grouchiness and it was close to her bedtime. I thought she just needed a bottle. I picked Niki up and held her while John warmed a bottle for her. She got her bottle, but didn't seem very interested in it. And, she was still grouchy and sulky. So, I figured she was hot. Niki was wearing footie pajamas and when I started to pull them off, she began to cry in protest. That's when I knew something was up.
Once she was fully undressed, I began visually scanning her for bruises or swelling. John and I checked her entire body, carefully bending and examining each joint until John finally discovered thumbprint-sized bruise (hematoma) on her inner left ankle. The area where the knot was located was warmer than the rest of her foot. Upon closer inspection, we realized that Niki's entire left foot was a bit more swollen than the other, but she also has adorably chubby feet so it was hard to tell at first glance.
Here are a few pictures of the bruise/knot. It looks insignificant, but it (the hematoma) was the size of a gumball.
Swelling... (pictures taken while waiting for the EMLA to kick in)
Niki was crying during entire "exam" so it was hard to tell if the lump was the actual source of pain. She bruises easily and she always has some sort of odd knot or lump somewhere. Besides, joint bleeding is typically accompanied by larger bruises, redness, warmth over the entire joint, and "guarding" of the joint. John and I were leery about making a snap-diagnosis. We were leaning toward an ankle bleed, but we weren't 100% sure since she didn't fit all the criteria. AND, she's never had a joint bleed before so we honestly didn't know what the hell we were doing.
No amount of "reading up" on something can help you when that something actually happens.
Niki is a headstrong little girl so she was trying really hard to end the exam. The minute she had the chance, she broke free from us and attempted to get down from the couch. The instant her left foot touched the floor and bore all of her weight, she yelped in pain. Niki quickly lifted her foot and used the couch for balance instead. She then gingerly held her foot ever-so-slightly off the ground and stared at us she whimpered. It was at that very moment that all everything fell into place. She was barely walking earlier because her ankle was starting to hurt!
It can take a while before a joint bleed actually becomes painful. Pressure builds up as blood fills up the joint capsule. Pressure = pain. I've read that the initial sensation of a joint bleed feels like "bubbling" in the joint. Niki isn't exactly vocal so she can't tell me when she thinks has a bleed. It's hard to identify "cranky baby" vs "I'm-in-pain-baby" at this stage in her life.
The way I've written the sequence of events seems drawn out, but in actuality, this all occurred within the course of 5 or 10 minutes.
Once we discovered the problem, John immediately got on the phone and contacted the on-call Hematologist. I grabbed an icepack and placed it on Niki's ankle while she used her other foot to try and kick my hand (and the icepack) away. What can I say? The girl is a fighter.
Niki was not a happy camper. The good news was the Hematologist said we didn't have to take her to the ER for the bleed. As long as the swelling and warmth didn't spread once she got a dose factor (this would indicate that the factor didn't work and she was still bleeding into the joint), then we could wait until morning to have her evaluated. The bad news was we had to wait for the EMLA (numbing cream) to kick in before we could give her factor.
Although I agree it would have been barbaric and traumatizing to poke Niki without numbing cream, I still wasn't fond of waiting ONE HOUR for the EMLA to kick in before I could administer factor. Sometimes it feels like it was soooo much easier when she had her Broviac. I'll post videos someday, but basically, all we had to do (when she had her Broviac) was screw on/off syringes. Now, we have to put on EMLA one hour before, poke her, screw on/off syringes, and remove the needle while she screams and cries.
I'm wondering what would happen if she had an acute bleed/injury? Will we have to poke her sans EMLA then? I dread the idea of having her hurt in two places at once. I tried a bit of EMLA on my hand once and it didn't do a damn thing to numb me up. So, I'm really starting to believe that EMLA has more of a placebo affect than anything else.
That was the longest hour EVER, but we all made it through. We thought of different ways to keep her preoccupied while we waited for the EMLA to kick in....
NovoSeven is a Godsend!
Infusion supplies...
We (John, my MIL, SILs, and I) were not allowing Niki to walk AT ALL until further instruction and we iced her ankle like crazy overnight. By morning, the swelling had improved and she seemed to be in much better spirits. Nurse Richard called to let me know that Niki needed to be evaluated and possibly have the ankle splinted so it would stay immobile. Unfortunately, Dr. Awesome didn't have any appointments. I had trouble getting off from work to take Niki to her appointment to see Dr. Sweetheart. Believe it or not, my manager denied my last minute FMLA request! We were very short staffed and even though Dr. Sweetheart is two floors down from me, my manager still couldn't let me go to Niki's appointment.
It made me feel like I should have called in sick instead.
I wanted to be there for Niki and it REALLY SUCKED that I couldn't be. But...I'm the "good insurance" supplier and I have to do everything I can to protect my job. John was just going to have to go to the appointment by himself. It was a factor day so Niki already got her prophy dose of NovoSeven before I left for work. However, I messed up because I should have kept her accessed (with a needle) in case her dose/regimen was going to get bumped up for the bleed. At least I know next time she has a bleed, right?
The good news was Niki didn't need to have her dose bumped up after all. Dr. Sweetheart (her Pediatrician) diagnosed Niki with a really bad hematoma. Niki still had some tenderness in the area, but she was well enough to bear weight on her ankle again. NovoSeven is the bomb I tell you! A friend with FVII-def told me that she didn't have bruising when she had joint bleeds either. So, I'm not 100% convinced that Niki didn't have an ankle bleed. I just so happen to believe that NovoSeven is just awesome like that. ;-)
I guess we'll never know if this was a true joint bleed or not, but I'm just happy that my baby is OK.
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