Monday Update

It is only lunch time and today has felt LONG! I woke up at 4:00 Am to the sound of the monitors alarming. Alex had misunderstood the nurse and thought he could switch from the face mask back to the nasal cannula. We let him try for 5-10 minutes, but he couldn’t get his saturation’s out of the 70’s so he went back to the mask. After that I was able to sleep for a few more hours. The overnight PICU doctor came in this morning before she was done with her shift. Based on presentation and the timing of when our issues started they have decided that the biggest cause of his respiratory distress is Transfusion Reaction Acute Lung Injury (TRALI). It is an extremely rare transfusion reaction. He has had hundreds of transfusion and never reacted before. They said this can happen to anyone at anytime. His X-ray did of course show some atelactisis or pneumonia as well. So for now we are just supporting him with really high levels of oxygen support. We were able to get him down to 9 lites on a regular mask for much of the night and morning, however exertion definitely makes things worse. He stood up to go to the bathroom around 10 and it set us back quite a bit and we still haven't recovered. He is currently on 14 liters on the non-rebreather mask which is a little more support than the regular mask.

After the PICU doctor we saw our surgeon. He ordered ultrasounds to be done to be certain there are no more clots. He really would like Alex to be able to get up and walk to help healing, but respiratory wise that isn’t possible right now. So no news from the surgery side. The good news is that the CT Scans did not show any bleeding.

Next, we saw our Palliative Care doctor who popped in to check on us and see if we needed any additional support.

Hematology was consulted and I was very excited when I saw that it was a hematologist that we saw for about 2 years. We really liked her (we stopped seeing her when Maddy had significant hematology problems and started seeing one of her partners. They decided to have both kids see the same Dr. to make life easier) She is now the specialist who rounds for thrombosis and strokes. She let me know that the pulmonary embolism they saw as tiny. They do not feel like that is the cause of any of our current issues. They are treating us based on his complex history and the fact that he had major surgery. Their bigger concern is if there are more clots. They have run a number of labs and ordered even more ultrasounds and an echo of his heart. I do not know the results of any of those yet. If they find no other clots he will stay on a heparin drip for several days and lovenox shots for the rest of his hospitalization, but not go home on any treatment. If they find more clots then that plan will change.

Pain team is not changing anything at this point. He is doing okay. We do not feel like he needs more pain medication, but we also don’t want to lower anything because we need pain to not inhibit his ability to try and take deep breaths.

We have not see Dr. o yet today, but I do not think he will change anything. Alex’s motility seems to have decided to join in on the fun and seems a little worse than yesterday.

I think that mostly catches you up...The only other thing I can think of is that after the transfusion his hemoglobin was 12.6. This morning it was 11.2. Surgery was not concerned. Hematology said that sometimes with transfusion reactions your red blood cells can “burst” even if you are not actively bleeding. So they are watching his counts closely.

THANK YOU so much for all of the prayers. All of the love. All of the meals and Starbucks. We are so grateful for all of the support. Please pray for ALex’s healing,  but also for his anxiety. It is scary to hear everything they are talking about and even scarier to feel like you can’t breathe. He is glad we are in the PICU because he feels safer knowing he is being closely watched.

Ali