Yep it’s not, even though Jesse is smiling.
Jesse and I headed out at 6:30am to clinic for labs. This lab was a fasting lab because they wanted to check her triglyceride level. Being on the Accutane can elevate this level.
When our nurse tried to draw off one of her CVL lines, nothing. She tried an extra flush, no blood. This isn’t a big deal because sediment sometimes settle in the lines. (The big deal is when they don’t flush.) She asked the doctor to order some TPA to break up any sediment in the lines.
When they put the TPA in, it needs to sit for 30 minutes to an hour to break up the sediment. By 10:30am, we were ready to try the for the labs again. Nothing. With nothing coming from the lines, this means an x-ray and trying TPA again. Our nurse suggested getting the labs from her arm (meaning they would have to stick her… something we don’t usually do because we have the CVL).
Bless her heart and the clinician’s, sticking Jesse was the last thing either wanted to do. In fact the clinician came in the room with an extremely bummed out look on her face, but she did an excellent job. She hit the right spot in the first try and Jesse barely flinched. (Wish she was taking my blood work next Tuesday!)
After the labs were drawn, Jesse and I went down to radiology for an x-ray of her CVL to make sure it was going in the vein. We had to wait 45 minutes before being called back because they were extremely busy.
I am very proud of Jesse because I know she was starving. Not once did she complain about the wait. And when it was time for her x-ray, she sat perfectly and cooperated fully with the technician. She was really excited to take her “picture”.
We stopped by the cafeteria, grabbed some lunch, and returned to clinic to wait for the results and get more TPA. I was really hoping that maybe this second round of TPA would work and her CVL would give a blood return as it should.
After an hour sitting in her lines, we tried getting a return. Nothing. Then our nurse educator who is also in charge of the antibody commented that we had to practically stand her on her head to get labs in PICU during her second antibody round. This gave me an idea. “Jesse, do downward dog.” (The girls love trying the different positions with me when I try practicing yoga.)
Jesse bent right over. As we were all laughing, our nurse was able to get a blood return. Another nurse said we needed to take a picture of this. So I handed her my phone. Because everyone was laughing, Jesse thought this was great. I have a feeling we’ll never take labs the same way again. But this is also a bad sign.
Our doctor told me they were ordering a fluoroscope to see how liquid was flowing through the CVL into her vein. During a fluoroscope contrast is injected through her CVL while she lies under a special x-ray machine that takes video of the flow pattern of the contrast.
Jesse happily went down and laid calmly on the table. She wasn’t afraid while the camera was moved in a position to tape the flow. She even started to go to sleep.
It was amazing to see her CVL and watch the flow. Her CVL is definitely not curving down and around in her vein as it did when first placed. Now it is parallel with her clavicle.
After the fluoroscope, Jesse and I returned to clinic. Our doctor explained that everything was flowing in as it should, but there was a clot or the vein wall at the end of her CVL preventing blood draws. He had order some medicine to sit in her lines for 24 hours. Hopefully this will break up any clot if it is there, but he wasn’t very optimistic this would be the case. ( I am getting ready to find out because it has now been 24 hours).
He also had our nurse set up an appointment with the CHKD surgery team because he really thinks Jesse’s line will have to be replaced. This bites the big one because I was hoping the next time Jesse had a surgery would be to remove the CVL. On the other hand, she’ll be getting the CVL put back where it belongs. Changing her tape last night knowing the CVL tip was parallel with her clavicle was a little more nerve racking than normal.
And by the way her triglycerides were 380 (normal is 140), but they won’t put her on medicine unless they reach 500. Her red blood count was 11.2, platelets 219, and ANC was 2045.
Jesse Grace! Standing on your head! How smart! You are very brave, sweet pea! I am praying, praying for the results to be good ones. Jesus loves you! Will check back to see how everything is going. The Lord and His Angels are with you.
What an acrobat you are, Jesse Grace! And to do it so well withou complaining! I can’t stand having blood drawn and I’m a Granny!! praying for you. Granny Wanda in Arkansas
Jesse Grace,
It seems that I remember you trying to stand on your head in music class!!! What a talented girl!
I miss seeing your family and continue to follow your Mom’s blog. Tell Mommy that as she is taking care of you and Chris, that she also has to take care of herself. Daddy, too. Tell Chris that I said hi!
I am so so proud of you for being strong and not complaining. We all love you.
Mrs. C.
Who knew that would come in so handy 🙂 Although now it’s not working because her line is done. But the good news in all this is she has grown. I miss seeing you in music class 🙁
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