September 14 - Blood Work

September 14 - Blood Work

Well today was quite the day!! We got to the lab and Levi immediately wanted to go and see his fountain. He was admiring how tall it was!

We got inside and Levi picked his band-aid. He found the paw patrol box and we were able to find one with Rocky on it! He was super excited!

Then the day just goes down hill. P did the stick and it didn't go great. It's a huge blessing that he is so good because she had to move the needle a lot to find the vein and the worst he ever said was "ouch" and looked at her with his pouty lip! Then once it was done he headed to the treasure box. For several days he had been talking about wanting a stuff from the treasure box. For the last month or so there has been a dinosaur and a caterpillar stuffy in their that no one had taken for at least a month, and of course when he goes to look today they were both gone! He was so upset. He ended up taking a bottle of bubbles and a small rubber ducky! He gave his hugs to P and we were on our way to school.

School drop off went fairly well. We got there at 8:23 so he made it in time for breakfast (they hold it for him on Thursdays so he will get to eat as long as we are there before 9:30, but I don't like to have to use that accommodation if I don't have too as I know it make him either miss things or the whole class to be slightly behind for the morning!)

I headed to work to await the results. By lunch time when they hadn't come in yet I was annoyed. By 2:00 when they hadn't come in and there was no message on the answering machine I was angry. I had to leave work to drop my stuff off for the consignment sale so I decided I would just make a pit stop at the hospital. First I checked in with P to make sure that the orders had been put in right (one time ever they hadn't, and I didn't want to get her in trouble!). They were put in right so I asked her who I should escalate the issue too. She gave me a name and number of the lab supervisor. I headed straight to the front desk where they called the supervisor, who of course didn't answer. I headed out of the hospital, called Jay and vented for 5 minutes or so and then headed back inside. I asked them to call her again and still got no answer. I decided that I had had enough and that today was the day I was going to escalate this. So I had them call the VP of Patient Privacy, a lady we have worked with before about the faxing of lab results. She also wasn't in, which isn't a huge surprise, but at least I got her number. At that point I requested a meeting with a patient advocate.

It was only a few minutes before the advocate, Derek, came out to talk to me. We met in an office and I explained the issue. He questioned my true need for a stat lab for a minute and why we got the results directly as well as our doctor, but once I explained myself multiple times he seemed to get it. He contacted the lab director, who also wasn't in. At this point he seemed to be hitting a wall so he requested that we walk back to his actual office (he talked about it being a long walk, I wanted to say "umm... this is WD you should see the walks we take at DHMC" but I didn't). We got to his office in about 30 seconds! I waited while he made some additional phone calls and talked to some additional people. He found Levi's lab results, but supposedly the people who had them, Medical records, did not have access to release them to the fax number even though the fax number was on the order. Very frustrating. So I had to travel to the Broadway office in order to get the results for today. Derek did say that he is going to continue to track down the root cause of the overall issue, but that at least I would have today's results.

I was a little worried that I would get over to Patient Records and they wouldn't actually have them as before I have been told that Patient Records does not get records until 5-7 days post lab, but I was pleasantly surprised that I had not been given the run around, and they did indeed have the results. And not only did they have them, the lady who Derek had talked to was waiting for me to personally hand them to me, all I had to do was sign for them! While I was there I also picked up the records from the August 15th blood work that we had never received so that I can update our records with those numbers as well.

It was a long afternoon! I walked into WD at 2:05 to start the process of tracking down the records, and walked out of Patient Records with the results at 3:15! But at least I had them.

Levi's counts are 201! A great number with the fact that we are now technically "over due" for an infusion based on our past 3 week schedule, he would have gotten one on 9/12. It is a 35 point drop since last week which makes it a fairly steady flow downward, judging on past data once we start dropping we don't stop, but we will see if we level out somewhere or not!

Next Steps: We will probably start doing blood work twice a week now, which means we will do blood work on both Monday and Thursday (clinics/infusion are Tuesday and Friday) but we will see how his weekend goes if we decide to start on Monday or hold off until Thursday.

On another note I truly believe that everything happens for a reason. You don't always know that reason, you might never know the reason, but every decision is a reason in someone's life. And the fact that we went to wait and see 3 weeks ago, and we were not at DHMC on Tuesday 9/12 during the Active Shooter incident we were very grateful. We are also very grateful that no one we know was injured and that the incident was handled well by the police and security team! I am not sure how I would have handled that with Levi and what I would have explained to him if we had evacuated the building, so I am just grateful that it wasn't something we had to handle. Our thoughts and prayers are with the family of the deceased and the shooter who is in custody.