Lymphangiograms

Let me just start with we had a lot of hope this would help alleviate a few issues we were seeing and would completely resolve others. It was 3:30am when we left the house to make it to CHOP by 5:30am, her procedure report time. I must say Jocelyn was one happy baby for being up that early. She smiled and laughed and babbled until she fell right back asleep on the ride. She was also being a ham with pretty much anyone that payed her a passing glance as we walked our way to the cardiac outpatient center. She was all smiles that is until she realized where we were. Then she got fussy and clingy and even her favorite tv shows couldn’t bring back the smiles.

The IV took a while to get, it always does, which as a parent is just unbearable to have to handle. Especially when you requested an ultrasound guided IV and the nurse doing it assures you she doesn’t need it…. three sticks later the IV is set up. Worst part about you reading this is you can’t see the enormous eye roll and annoyance radiating through my core that came with me writing out that last sentence. They decided to give her a mild sedative to calm her down and the smiles were back! We got to meet with her anesthesiologist whom we had actually met before, and pierced her ears the last surgery she had. She was kind enough to let us walk her back before the hand off to the sterile procedure area. This baby thought the ceiling was funny while walking back, who knew Versed could make a baby so silly. We gave our kisses and hugged her tight. The pass off is always the worst. This time though Jocelyn did okay she wasn’t happy but.. she didn’t freak out.

We quietly walked back to get our stuff and set up camp in the waiting room. This is where we are to sit and pass the time while we receive hourly updates from the charge nurse on how she was doing back there. These honestly are life line, they come on the hour and if we left for any reason, food, bathroom, ANYTHING, we made sure we were back for our hourly update. After about the third update it was pretty much the same, Dr. Dori was attempting to fix her lymphatic passageways.

This may now get a little medically technical so I will do my best to explain but bear with me. After this procedure we met with Dr. Dori to discuss his findings. He started by saying she had a pretty abnormal lymphatic system. On a scale of one being least abnormal to 4 being the most abnormal, she was a 3. I feel like this news doesn’t come to a shock to us anymore. Everything about this kid is different and complex yet somehow she has always been able to make it work to some degree. However he was unfortunately unable to fix it entirely. Her lymphatic passage way to thoracic cavity (area over her lungs causing the problem) was too narrow for him to access. So he attempted to access some lymph nodes around her lungs to embolise. In an effort to relieve some of the extra lymphatic flow over her lungs, he was able to do a few but not many. Dr. Dori left us with she needs more time for that passageway to grow. I can’t lie at this point in the conversation I’m crushed to know this time he wasn’t able to fix it. So our tentative plan for now is to keep her heavy on the diuretics. Which is not ideal, it’s a very fine line of appropriate diuresing and total dehydration. Dr. Dori will map out for her surgeon what else needs to be done come time for her Fontan (her next step open heart surgery). She will not need this surgery until 2.5 to 3.5 years old. Cardiologists look at many factors to decide when each child receiving these step surgeries will need it. So with that being said it leaves us in a potentially long process of balancing her fluids and keeping her as safe as possible until then.

There is a backup plan though, there always is. If in the event we cannot keep this in check with medications there is another surgical option. One that we would very much prefer not to have to under go as the long term repercussions are unknown.

As for how Jocelyn is doing, well she is a freaking rockstar. She was only the CICU for 24 hours before we could go to the step down unit. Where she hung out for a few more observation days while we rearranged her diuretics making sure she electrolytes were all in good balance. I know we will be more closely monitored and more frequent office visits complete with X-rays and lab work. So here’s to more stress… We are currently home and she’s seems to being doing just wonderfully. Fingers crossed and all the wood knocked on. Thank you for reading and I hope everyone continues to make the best of the summer.