Not a day passes when I don’t admire my daughter more. She is a tough little fighter. She constantly surprises Jackie and I with her strength and ability to rise above her circumstances. I am proud to call her my daughter. Last night was a long night but it was just a prelude to today. At 4am, after changing her diaper for the “upteenth” time, after a dose of Lasix, and after cleaning up a mess of vomit a couple of hours before, I thought I could finally lay my head down for at least an hour and a half. Relieved is a word that comes to mind. Then I hear:
Rafi: “Daddy”
Me: “Hey Rafi”
Rafi: “Daddy”
Me: “Yes honey, do you want me to pat your back?”
Rafi: “Daddy, put cream on my arm.”
She was itchy but instead of scratching her skin off her arm, she asked me to put some Alwyn cream, which relieves the itchiness for her, on her. She’s just so funny. I couldn’t help but smile and not worry about losing more sleep. She knew that the cream would help. I should also mention that she requests Tylenol by name when she is uncomfortable and I just love the way she pronounces it.
At 6am, we vented her gtube, which means leaving the tube open so that air and undigested food can escape the stomach, thereby making her more comfortable and less likely to throw up in the morning. Thankfully, after that she slept for 2 glorious hours. When I awoke at 8am, Jackie was in the room waiting for Rafi and I to wake.
We planned on having a bath and bandage change today and that meant giving the chloral hydrate and Dilaudid cocktail another try. This time we were going to give both at the same time (an hour before the start time), with a second dose of Dilaudid about 2 hours later. We didn’t get very far because Rafi had a terrible reaction to the chloral hydrate. The other two times she received the drug she was agitated but calmed down. Not this time. At first she just looked like a drunken sailor. She was playing with Sarah, her occupational therapist and having fun, but she was clearly intoxicated. And then, she went into a rage that I have never seen before. She screamed for 2 hours straight, violently thrashed around and nothing worked to calm her down. They call this a paradoxical effect. She has the same reaction to Benadryl. After creating some new wounds and exacerbating existing ones, we gave her some Ativan to calm her down and let her go to sleep. It was difficult for everyone to see because of the sheer violence of it. She slept for about 3 hours and woke up, still a little loopy from all the drugs, but in a better mood.
After a little coaxing, Jackie got Rafi to stand up to get some exercise. The day before she was finally walking around finding the bean bag animals, Katie, her physical therapist hid throughout the room. We want her to be as active as possible at this point. It makes Rafi happy to be active even though she now needs to be coaxed into it. She is a little scared by the hospital and all the new faces but we thought we may have turned a corner after her experiences with Katie and the time she spent with Daina yesterday. Daina is her nurse in Minneapolis who helped with the bandage changes before our hospital admission. She adores Daina, who really goes above and beyond the call of duty with Rafi. After bandage changes, Daina would stay at the house and play with Rafi for long periods of time. Without fail, every time we say bath and bandage change Rafi says with a smile, “Daina’s coming.”
Anyway, Jackie got Rafi to stand up and move around a little after the failed bandage change. Two minutes later, Rafi’s Gtube fell out. The whole thing just dislodged from her stomach. Needless to say we were a little taken aback, to say the least. Thankfully, and to their credit, everyone on 5D moved quickly to get a GI specialist in the room, to get more Ativan, to help change a diaper soiled with diarrhea as well as the leg bandages which were also soiled, and to help distract and contain Rafi as the GI doctor reinserted the Gtube and inflated the balloon that keeps the Gtibe in place. Even though it was placed back in the hole through her gut, there was a slight worry that Rafi would have to undergo surgery to replace the Gtube. The 5D team got radiology to bring up a portable x-ray machine to make sure the Gtube was placed properly. I though Rafi would freak out during this whole saga. She didn’t. She was amazing. As it turns out, the Gtube was placed well, we learned how to keep the balloon inflated and Rafi was once again drugged up.
Soon after I got home, Rafi ran her first fever of 100.6. This triggers blood cultures and an x-ray. This time, Rafi would have to wear a mask to protect her against airborne germs as she was brought down to imaging. We are waiting the test results but now she is on a stronger anitbiotic for the confirmed staph infection, and an antibiotic for pseudomonas, should that be an additional infection. I can now say we are truly part of the EB transplant club. Keep your fingers crossed that the results come back in our favor.