I was able to get one of the sleep room and get a little rest while Annett stay in the ICU room. We will take turns so at least one of us get some sleep. however it did not work as plan, early this morning (at 3 am), Annett texted me to come back to the room.The resident in charge of night shift was worrying about Jagger low Hemoglobin level (around 7, while normal is 10.5 to 13.5), and wanted to do a blood transfusion. He seems to think it will help him get stronger and fight any possible infections. At this point, we really wonder what else can possibly happen, and what he will need next, this seems to be going downhill every days. We decided to call my Dad for some advice and he seems to think it would be a good idea based on the situation. So we agreed to do the transfusion. However Dr. Ka (Attending ICU) decided we should wait until the morning as it will be easier to deal with any possible side effect when the day team is there.
Annett texted me at 8 am (you cannot get in or out of the ICU between 7 and 8 am) that M. (our genetic nurse) was here to check on him. We had a good conversation with her and we have a meeting set up for Thursday with the entire team to discuss/come up with a plan for his care. She also agreed that the blood transfusion was a good idea and that we need to get his hemoglobin level as high as possible before we take him off the ventilator.
Dr. Ka explained to us that Jagger was actually doing most of the breathing on his own and the ventilator was only helping a little bit. They have him under heavy sedation but that does not seem to work so well, he does open his eyes a lot and move quite a lot, so they keep having to give him extra boluses because of his disease, his body metabolize the sedation very fast.
Since, he is already under sedation, I have been calling all his doctors to see if they want/need any test. A few needed some, so he had a Endoscopy and a MRI. The endoscopy was perfect not even showing any inflammation, so it is still a mystery where the blood in his stomach came from (hte one reason why we came to the ER in the first place last week).
Dr K (our Neurologist) will take a look at the MRI later today and will come talk to us tomorrow. He has a MRI 6 months ago, so we will be able to compare them and see how the disease progress and if his brain is still growing as it should.
Hopefully we get good news tomorrow. Looks like I am getting the sleep room again tonight, Annett wants to stay in the room with Jagger.
Today is also Annett's birthday but since we are stuck in the ICU she decided she did not want to celebrate her Birthday this year. Hopefully we can still do something special all 3 of us once we get out of this place.
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