עדכון אבא ובקשה
אין לנו חדשות מאז שאבא קיבל את מנות חלבוני הדם המרוכזים. הוא קיבל את התרופה על פני ארבעה ימים והמנה הסתיימה לפני כשלושה ימים. קיווינו מאוד שזה יוביל לשיפור במצבו אך תמונת הריאות נותרה כשהיתה והרופאים לא מצליחים לגמול אותו מהאקמו. אבא מורדם ומונשם אבל מגיב לקולות אהובים ולמוסיקה מוכרת.
אני כעת בסן פרנסיסקו – לא ראיתי את ריו כבר שלושה שבועות והוא קטן מכדי להיות בלי אמא זמן כה רב. ברגע ששנת הלימודים שלו תבוא אל סופה, נטוס שנינו להיות עם אמא. עד שאשוב, מבקשת מאוד להיות טובים ותומכים באמא ככל האפשר.
Dad update + request
We don’t have any new updates since the ivig was administered. It was a four-day dose and it ended about three days ago. We were hoping to see improvement but, sadly, there’s no visible improvement to the lung damage picture, nor have the doctors been able to successfully wean Dad off the Ecmo. Things are pretty much the way they were.
I’m in the US now – I hadn’t seen Rio for three weeks and he’s still very young to be without me for so long. But I’ll return to Israel as soon as his school year ends. In the meantime, good ways to help and support my mom might be to visit my dad and text her ahead of time, so that she can occasionally get some rest in the evenings. Visiting hours in the ICU are 1-2pm and 6-7pm. Dad is intubated and asleep, but he can hear you when you talk to him and he registers emotion when he hears a favorite voice or piece of music.
May 22: BOOP and IVIG (Hebrew)
May 22: BOOP and IVIG (English)
One of dad’s biopsy tests came out positive for a rare lung disease called BOOP. BOOP is treated with steroids, which dad is receiving, but his body is not responding to them as everyone hopes. The doctors woke dad up and, for a few days, he saw and heard us and even communicated with his hands and fingers, but he suffered great pain and had serious trouble breathing, so they had to put him to sleep and intubate again. Today the doctors will begin to treat dad with ivig, which is a transfusion of concentrated blood proteins from thousands of blood donations, in an attempt to depress a possibly overly active immune system that might be standing in the way of the steroids. These are very difficult and scary days for us, but we’re at least relieved that he is suffering less now that he’s asleep again.