August 16th, I brought The Vole in for a scheduled transfusion at noon. I typically bring him in to the UCSF pediatric hematology/oncology clinic every 3 to 4 weeks. This time, however, we wanted to push his system a bit, wait for 5 weeks and see how he responded. Turns out, he did okay. His blood levels hadn't dropped to a critical point and he didn't seem too affected by the anemia.
The days I bring him are usually not too bad. We'll spend up to 6 hours at these appointments and we use a pack and play that was donated to the clinic. Frankly, I couldn't do it without the play pen. He is so active there is no way could hold him in my lap for that long. As it is, he finds it very frustrating to not be able to crawl around on the floor.
Well, the week before we went in I was noticing that his line looked different to me. When I would flush the line I could see dark shadows moving - I shouldn't see anything moving in the line! So, one of Oliver's nurses, Stella, took a look and determined that there was a hole in the inner tubing and blood was collecting between the outer and inner layers. This means that after a years time we now need to make some repairs.
The picture to the right is Stella holding Oliver while letting him play with his infusion pump used to transfuse him with blood. Check out the bag hanging above O... ghoulish, no?
For some reason, on this particular day, Oliver had got his panties in a bunch and decided to throw his first temper tantrums (several over the course of the day) and also couldn't settle down to take a nap. Nobody is happy. By that, I mean, I am not happy.
You can see how frustrated he is in the picture to the left. He is so strong, and so annoyed about being in the pack and play that he has completely lifted himself off of the mat with the strength of his arms. He does this several times. Go Oliver!
5 o'clock rolls around, O is done with the transfusion and he is
still awake. The problem is we now need to repair his central line but to do so he needs to be absolutely still. My suggestion is Benadryl... a surefire way to knock him out for at least an hour. In the meantime, I have called George to come be with us during the procedure . It's great to have him around when he arrives. I have found that I just can't quite deal with these additional situations as well on my own. Mama of The Vole needs backup! Who better to call than Keeper of The Vole?
As you can see from this photo to the left, Oliver is now passed out from both exhaustion and the Benadryl. I've covered his eyes with a shirt to keep out the light. Repair is underway.
Nope! That's not blood you see. It's Betadine splashed around the site to keep it clean. If you look at the white gloved hand, you'll notice the splint that now connects the original portion of the tubing and the new tubing held together by.... glue. Hmmmm.... I admit to low confidence in the procedure.
We are almost done with the repair when Oliver wakes up, now needs to be restrained, and he proceeds to freak out. I don't blame him. I would too. Poor guy. He really goes through more bullshit than you can imagine. And amazingly, he handles it all remarkably well. Anyway, by the time the repair is finished, my nerves are completely shot, George is desperately trying to console him, and Oliver is ready to pack his bags and get out of town. We go home and crash for the night.
Fast forward to September 14th. We are back for his next scheduled transfusion and this day is much, much better. Oliver fell asleep within 10 minutes of
watching
"Elmo goes to Grouchland" and slept for a solid two hours. Hooray for Oliver! You can see him here asleep in the pack and play while receiving blood.
I've also included a picture of the view from our room that day. This is looking east towards downtown. 
If you look carefully you can see the
Transamerica building in the right of the photo. Some days we have a view to the north and can see
Golden Gate Park and the
de Young Museum.
The weekend comes and goes; completely pleasant and uneventful.
The same goes for all day Monday until about 9pm. George had just left the apartment, I was putting Oliver to bed, turned off the light when I heard him poop. So, I turn the light back on and notice that something is not right. He is in his usual position to sleep, on his tummy with his knees under him, but his behavior is odd. At first I thought he was concentrating hard on a poop but then I just knew something was wrong. It's weird how you "know". I didn't actually "know" anything other than something had changed, and not for the better. I call George to come back downstairs and by the time he does (less than a minute) Oliver is now shaking and unresponsive.
We quickly grab our things and off to the hospital we race. Other than when he was first born this is the most scared that George and I have been about Oliver's immediate well being. Within 5 minutes of arriving at the UCSF Emergency Department Oliver comes around, sees buttons to push and begins pointing at everything. As I am trying to convince the doctor examining Oliver that he really was doing something frightening, Oliver throws up all over us and now has a fever of 103F/39.4C degrees. Okay. We're not nuts.
Oliver is carefully observed, given Tylenol (and then throws up all over his nurse), blood cultures are sent to the lab, and antibiotics are begun (standard of care for him with fever because of central line). Turns out that what we saw happen was a febrile seizure. This occurs mostly in kids his age in response to a rapid rise in temperature and we are quickly assured not to worry about any lasting effects.
After O is treated and the doctors are sure he is okay we wearily drag ourselves out of there and arrive home by 4 in the morning. That next day Oliver and I head out to the Hem/Onc Clinic for his second dose of antibiotics. We didn't go until late in the afternoon since we were so tired that morning. Around 6pm we are ready to leave when his nurse case manager, Laura, informs us not to leave... his blood cultures have just come back positive for a gram negative organism. Oliver has bacteremia. Given his constellation of signs and symptoms (shaking chills, high fever, vomiting and diarrhea) I would go so far to say it progressed to septicemia.
I call George and let him know that we are going to be admitted into the hospital. Laura and I walk across the street with Oliver and it's back to 7Long we go (the pediatric hem/onc floor). Unfortunately it's a familiar place, having been there a couple times before. This time, however, Oliver is placed in isolation. Not surprising since many of the kids on this floor are severely immunocompromised. We don't know what bug is roaming around in our boy at this point and precautions need to be taken to protect the other children. This means everyone who comes in is fully gloved and gowned to avoid accidental transfer to another patient. This also means that Oliver cannot leave the room. It's going to be a long week....
At 3am that night Oliver has chills and within 2 minutes has gone from a normal temperature 97.7F/36.5C to 104F/40C degrees. Wow! The nurse kept taking his temperature because she couldn't believe that it had jumped that fast. Next thing I know he is baking hot and we are giving him Tylenol again. The concern is that he not have another seizure. Now that he has had one he has about 30% chance or greater of another until about 6 years of age.
It's not until Thursday (I think) that we find out the name of the culprit - E. coli. Not the highly toxic kind you hear about on the news but the generally benign organism that lives in our gut. For reasons unknown, they permeated his intestinal lining and the central line may have played part in harboring the bug allowing it to get out of control. Now there is discussion about removing his Broviac catheter.
We knew there may be a chance of removing his catheter after it was repaired but the hope was that we could wait till we saw what kind of response he had to the steroids. So, I forgot to mention that the Monday he got sick was the first day we started giving him Prednisone. The plan is to give the maximum dose of Prednisone for a 2-4 week trial and start tapering the dosage once he is seen to have a response (only about 30% of DBA patients will respond). The response they are looking for is an increase in red cell production decreasing or eliminating the need for blood transfusions (more about this in another post later).
Well, that Monday we had just given him his second dose of Prednisone and within 30 minutes he is having a seizure. At the time we had no way of knowing if he was having a toxicity reaction to his medication or was sick due to some other cause. I think this is another reason this episode was so scary.
The end result of all of this is we are discharged Friday, September 21st and can continue administering his antibiotics at home. Hooray!
This is Oliver very excited that we are about to blow out of here within the hour.
The current plan is to check blood cultures again the first week of October to be sure the bugs have been squashed. He'll be transfused on October 5th and then he is readmitted into the hospital on October 10th in preparation of surgery the morning of October 11th. It's been decided to switch out his Broviac catheter in favor of a
Port. Finally, Oliver will be able to have baths, be fully immersed in water, I'll no longer need to maintain his line everyday, and best of all it will greatly reduce his risk of infection. The down side is that he will now have to endure needle sticks. Hopefully, in the end it will greatly improve the quality of life for all of us.
I'll be sure to keep you all informed about how the procedure goes and if you please, keep Oliver in your thoughts and prayers.
BLD is a nationwide event for kids under seven. It's a fun space (usually a local club) where they can groove, get down, and shake their thang! After being a bit overwhelmed at first by all the lights, bubbles, music, and activity, Oliver settled right in and showed us his stuff. Caterina quickly caught on to his moves and has, herself, perfected "the Oliver": shake your fists in the air and do bouncing squats! That'll get your butt into shape.
Oh, and here is something momentous...Oliver wore a hat last night for 30 minutes and today for 20! Anyone who knows Oliver personally also knows that he can't stand having anything touching his head. Until now. Huh. You just never know about that crazy kid.
You can see him here with his friend Matthew who also has DBA. We finally got to coordinate their transfusions on the same day so they hung out in the pack and play together. It sure did make the day go faster. The hospital also sent out volunteers to bring the trick or treating to the kids. It was fun watching adults and kids parade in and out of the clinic in their costumes handing out goodies.
The other time Oliver dressed up was at the Parent Infant Program were we go on Tuesdays and Thursdays. A giraffe! The beans kept him pretty distracted but he wasn't fooled for long and wanted out of the costume.
Now that I think of it....I suppose I can also include the Day of the Dead parade in the Mission district.
I think Oliver felt like a cool cat in these glasses. He kept taking them on and off and looking at himself in the mirror and then laughing heartily.
This last one I love too. It took a lot of time to get this picture. I don't think that hat stayed on for more than 2 seconds at a time. We didn't buy it for him, of course, but I think it's a great look on him.
