We’ll give a quick update, but with all the not so fun times we’re experiencing now, we figured a photo break escape for you Ella fans would be good. But first…
Ella’s hanging in there, but the parents are exhausted. Her withdrawal symptoms have lessened a little bit, but she still very spacey and itchy. She slept through the night and had a good morning. She was awake for about 2 hours last night and then has been for most of today although she is still sedated. We have tried not to give any additional doses of morphine and have been able to avoid it thus far. One surprise today: she actually tried to sit up in the bed even though she didn’t have the balance or strength to sit on her own! That is her fighting spirit trying to work through the withdrawal meds!
Surgery came by to take a look at her: they still wanted to hold off on food. Once we heard the news, the PICU team thought it might be good to try her withdrawal meds via her g-tube versus IV. A small change, but one in the right direction (since we will have to wean the withdrawal meds at home too). However, they gave methadone via g-tube and within 10 minutes, she was writhing in pain. Apparently, her tummy really hurt. We vented her belly as much as possible and after 15 minutes, she was content again. So, they had to order the withdrawal medicines via IV again.
Ella’s hand looked puffy at the IV site and although it was still flushing, it had been active for 10 days. So, we were able to take it off today to give her hand a break. We checked the central line to make sure that we could still draw labs and it appeared that there were clots in the line. They ordered a TPA (tissue plasminogen activator) to clean up the catheter and eliminate clots. Fortunately, it worked and they are now able to draw off of two more lumens. Thank goodness!
We had asked the docs as well if they were sure that she’s experiencing withdrawal symptoms and not something else. With all the symptoms Ella is presenting though, we’re confident that we’re treating withdrawal. They have a Finnigan scale where they score her each day to see where she ranks on the scale. Ella is presenting most of the signs of true narcotic withdrawal. It’s so difficult seeing your kiddo deal with this when just a few weeks ago we were all enjoying our time together.
One more concern: this afternoon, she seems like her respiratory rate is higher, heart rate a bit higher and saturations not as good. Knowing Ella, it might be fluid related. She has been positive for urine output the past few days. Maybe the net effect is accumulating and we’re seeing signs of fluid retention. On a similar note, they increased her dosage of sildenafil because the echo showed that it was not all being absorbed through her g-tube. Maybe her diuretic is doing the same thing? If she continues this way overnight, we’ll likely be requesting a chest xray in the morning, just to eliminate that possibility.
Please continue to pray for the Bun’s healing and forward progress.
Below are some pictures of our trip since we hit California back in March. Enjoy…
