My Romanian Butterfly: Quick Hospital Stay

We got home late last night from a quick hospital stay. We got to the ER about 9 PM on July 4th, and were admitted to the floor at 5:30 am. Raul had been having a high heartrate, high respiratory rate, high blood pressure, and low urine output. After doing bloodwork it was decided that it was time for his next blood transfusion, so he was admitted. Once they got an IV, it took a bunch of tries, they decided they would also jump start his antibiotics with IV antibiotics as they thought he likely also had an infection brewing based on his symptoms. Right before they were going to start the transfusion he had a high fever, but luckily it came down with tylenol and they were able to complete the transfusion.

In the past his transfusions have always ended up happening in the middle of the night, but this time it was during the day so I got to see the whole process. They had to recheck his blood type and antibodies before it, which was a big project as they couldn't get any blood from him for a while. I didn't get why they had to recheck the blood type since he had a transfusion just in March, but apparently the antibodies can change. The transfusion took about 5 hours, and he got 250 cc's of O+ blood. During the transfusion they have to constantly check his vital signs for any sign of reaction to the blood. Luckily Raul napped through most of it.

After the transfusion he still was not peeing much at all, so they decided to start IV fluids as well. He got fluids through the night, and then the next day they did a bolus since it hadn't helped yet. This was on top of his normal continuous g-tube feeds. After the bolus he did finally start to pee more, but they kept the fluids running until discharge.

We did a dressing change with an audience of at least a dozen, but thankfully dermatology agreed with me that if it was just going to be a short stay we did not have to do a bath in the hospital since it was so traumatic last time we were there. His ankles looked pretty bad, but nothing looked super infected. Since we were there, dermatology offered to do the biopsy to confirm his EB subtype that we had planned to do in a few weeks. Raul was champ, and barely got upset at all about it! The results from that should be back in a few weeks. It won't change his treatment, but the results are needed for any future trials he may be eligible for.

Raul was VERY happy to get home last night and be out of the hospital. He has to be in isolation whenever in the hospital, so he can't get out and go to the playroom or anything. And we didn't get floor mats this time, so he had to stay in the crib the whole time, which is hard for a two year old! He was very grumpy while there, but is so much better today!

Hopefully we will be able to go longer this next stretch before another transfusion. It was 6 months between his first two, and only 3.5 months between these last ones. His levels were not at a critically low level, but he was quite symptomatic this time.

Watching fireworks on TV in the ER. Raul was so funny, he LOVED the TV fireworks, and kept clapping for them.