Day 49: No more IV meds, and other fun updates!

14184479_1375551709141459_571277656164902772_nIt’s been an eventful few days, all in a good way. On Sunday night, we heard the wonderful news that Idan’s new cousin Lia was born! With the help of FaceTime, Idan was able to welcome Lia to the family less than an hour after she was born. It was pretty special to see Idan’s face light up as he met his cousin for the first time. We have missed too many family occasions and celebrations to count, so it was that much more meaningful to be able to share this beautiful moment with our family from the other side of the country.

And we reached a small but significant milestone today. Idan does not need to be hooked up to the IV anymore at nights! As you recall when we first got out a month ago from the hospital, we still had to hook Idan up for 10 hours at night to an IV fluid bag that contained magnesium. We have been trying for the past month to transition the IV fluids to an oral med. First, Idan had to be able to drink 50 oz of liquids during the day to show that he didn’t require additional fluids at night. Over the last few weeks, as Idan began reaching and eventually exceeding his oral intake goal of 50 oz of water each day, we have been able to gradually go down on the amount of IV fluids (from 750 ml to 180ml, then 120ml and then 60ml) and we were able to shorten the length of the infusion from 10 hours to 3 and then 2. Next, Idan had to demonstrate he was able to tolerate oral magnesium (which can be pretty harsh on the stomach). After two weeks of experimenting and pulling back when necessary, Idan is finally tolerating the oral magnesium in a high enough dose that the clinic felt we can stop the IV altogether. This is huge news for a few reasons. First, quality of life for Idan and for us. Idan never liked sleeping with a tube connected to his line, and we never enjoyed playing nurse and disconnecting the tube in the middle of the night without waking him. Second, every time we need to access his line it increases the chance of an infection. So the less going in and out, and the less we mess with his central line in general, the better (we will still need to flush both parts of the line once a day with saline and heparin). Lastly, and most importantly, this is one less thing holding us back from getting out the central line in 2 months and hopefully getting to go home to NY. We hope he continues to tolerate the oral magnesium he gets and that his levels stay high enough without the IV dose.

In other news, Idan still has a mystery cough, but it seems to be limited to the night and morning. In the last few days, it has not been as bad as it was last week, so we are hoping it is almost clear. We will see. Idan will still wear a mask in clinic until he is done with symptoms, and of course this means that Idan has added several masks to his play doctor kit 🙂

This past weekend, we had lots of fun exploring the parks in our neighborhood, which were full of surprises. On Saturday, we discovered new trails in Magneson Park that we never knew existed. On Sunday, we went to Ravenna Park, about a ten minute drive away, and it felt like we stepped into Narnia. One minute we were standing on a large lawn overlooking your typical picnic table scene, and the next minute we descended down several flights of stairs only to find ourselves standing in the middle of a beautiful lush forest surrounding a ravine (that has to be a metaphor for something, right??). Thankfully, Idan has gone from having only enough energy to walk a few minutes outside (after a month in the hospital) to trekking an entire hour around in the park (with stairs and hills and bridges) and can enjoy these wondrous new places. Amazing how, as isolated as Idan is and with everything he has endured over the last few months, he is having adventures and seeing nature in a way he would rarely be able to back in our ultra-urban enclave in NYC. We always said Seattle is a place of healing, and feel grateful every day for these beautiful surroundings.

Idan is most looking forward to his upcoming visitors. This weekend his NY grandparents will be coming out and the week after his grandparents from Israel will be visiting for 10 days. He is very excited to see everyone (as are we!!) and we hope he continues to feel well and can enjoy this time with family.

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