and we're back

well... we had a good run at home. BUT we're back. (hopefully for just 3 or 4 days)

We went in to our first outpatient visit at Riley with the Hem/Onc department. We were set to meet Chi's immunologist and go over findings regarding his suppressed immune system. Last night, we noticed some swelling in his lymph node under his left armpit. Then this morning, there was swelling also pretty evident below his right armpit as well. At least we were going to the right specialist to ask about these new conditions.

When the nurse was taking his vitals after we were called back to be seen, we noticed the blood pressure cuff left some nasty marks on his arm. Just the little bit of pressure from the cuff broke some of his blood vessels below the skin. He has had hundreds of blood pressures taken and nothing like that had ever happened. Something is wrong.

After the doctor came into the room and saw his full-body rash, red-appearing face, swollen lymph nodes, and the marks left by the blood pressure cuff, he left the room to make some phone calls to admit Malachi to the hospital. We also learned that the genetic testing that was sent a few months ago came back. Malachi does not have the mutation on the one gene that they singled out for CHARGE. Regardless of the result, he will still have the clinical diagnosis of CHARGE due to all of his conditions. The doctor is very concerned about Malachi's immune system and is searching for answers. Unfortunately, now we're kind of back at square one. After this hospitalization, we will continuously be followed by this specialist at least every six weeks.

He's got quite the agenda the next couple days including the following:
1. He is to have a central line placed (a surgical procedure) because of all the labs that will need to be drawn and just overall access into his body because he is a very hard stick and his peripheral IVs do not last long.
2. He is to have 15 ml of blood drawn for further tests. The main thing the doctor wants to rule out is SCID (severe combined immunodeficiency). Things are kind of pointing toward SCID because of Chi's low T-cell count and apparent thymic dysfunction. Pray that this is not the case. We will follow down that road if we have to, but looking and thinking further than I know will not be healthy for me. The results from this testing won't be back for at least a month.
3. He will have a CT scan to check for any further lymphedema tomorrow morning.
4. They will also do a skin graft to get a better look at the rash (which seemed to be overlooked or brushed to the side when we were still originally inpatient). It could just be a bad case of eczema, but they want to rule out a maternal-fetal graft vs. host reaction. There is a chance that his body is trying to fight off any remaining T-cells that he still has in his system from me.

Right now, more questions have been raised than we have answers to. For his own safety at the hospital, Chi is in protective isolation. It will be interesting to see how much more protective we will need to be with him at home. For now, we wait.