Our First clinic day on Tuesday after the long weekend went well. His vitals were all normal and they were able to collect some (not all) of the blood they needed for his weekly check. We went home, Emerson ate his first supper outside and tried his first corn on the cob :) The next day Emerson spiked a low grade fever of 37.9. We called the nurse on call and she told us to come in to get him assessed. They did a full assessment and there were no signs of infection anywhere besides his 4 big molars trying to cut through. They ruled out an infection and sent us home with permission to give him Tylenol as long as we check his temp prior to dosing him. On Saturday we noticed his thrush had come back with a vengeance. His poor little mouth was red&inflamed and his molar cavities were covered in thrush. Again we called the nurse on call and they had to try and work out a way to get Emerson into the hospital without having to go through and wait in ER. Luckily for us it was a gorgeous day and the emergency room was eerily empty. They took us straight through to an isolation room where we waited for the Hematologist to come and assess Emerson. He also could not find any other source of infection, his lungs were clear, ears sounded good, and had not been having any GI symptoms. He increased Emersons thrush medication back to the treatment dose and we were able to go home and monitor him closely for any fever or signs of infection. He was pretty fussy all weekend and wanted to be held most of the time. We thought it was just from him teething and the thrush.
On Monday we had our second routine clinic day. The blood draw was a bit of a challenge and they were not able to get enough blood for all the testing they wanted. They were happy waiting until our next clinic day to try again for the additional tests they wanted to run. We went home but were called a couple hours later by the nurse. Emersons hemoglobin level had come back as 54 (normal value is around 120). We rushed him in and the nurse assessed to see if there were any sites she could get an IV/draw a repeat blood test. She couldn't see anything. At this point Emerson looks like a pin cushion. He has bruises and poke marks covering his arms/hands/legs/feet. She had to page the anesthetist to come with the ultrasound machine to try and find a site.. Even with that it was difficult to get a line but they were able to draw off enough blood to send down and get an IV. We were transferred up to our old room in Unit 2 where we waited for the test results to come back. His hemoglobin and dropped even further to 47. They discussed with us that Emerson had autoimmune hemolytic anemia. Emerson has no T-cells to tell his B-cells what to do. So in this case his B-cells have created an antibody against his own red blood cells. His body was destroying his cells faster then it could make them. The treatment for this is prednisone a steroid which will suppress his B-cells stopping the hemolysis. They started him on an extremely high dose through his IV. In this time they were also calling down to the blood bank to find matched blood to give him. His vital levels had been stable but with babies they are very good at maintaining "normal" until their little bodies give out and tank. The blood search was not going very good. Lab had to come and try and poke Emerson 3 more times (with multi pokes) to try and draw more blood for testing to get a proper blood match that had the same antibodies on the RBCs so his body wouldn't reject them. They were finally able to get a very small amount that they hoped would be enough for the testing. We sat waiting nervously watching his monitor for any change. They had been doing heel pokes to test his hemoglobin levels and the most recent one to come back was 43.. At this point his HR was elevated to 170 and his oxygen levels had dipped below 85 (normal is 100) twice. I was terrified, I had a disgusting feeling that at any moment he was going to tank. They drew another cap gas and it came back at 38.. The paediatrician came in and said we had to give Emerson unmatched blood because we couldn't wait any longer for a match. They consulted the PICU and had decided he would be safe to receive the transfusion on Unit 2 but had their team come up to closely monitor him through it. They drew up all the resuscitation drugs which normally are just in the room incase and hooked up the bagging unit incase he stopped breathing. I have never been so scared in my life.. They began the transfusion very slowly with no reaction. They gave the unit over 4 hours and Emerson had no signs of rejection (THANK GOD). They did another heel poke post transfusion and his hemoglobin had come up to 119. We got a couple hours of sleep and waited for a further plan.
The next morning just before lunch I had a look at his IV site. It was hard and didn't look right so I paged the nurse. The IV had fallen out.. The decision was made to put in his Broviak line early (a tunnelled central line catheter). There are risks associated with putting in the line early like an increased risk of infection and it clotting off but the benefits of not having to poke him a million times and having a secure way to administer medications/blood products outweighed the risks. Emerson was taken into the OR at 7pm and we were back in our room by 9pm. The line insertion went well. They did have to give him another unit of blood because his hemoglobin was back down to 67. Once back in our room on Unit 2 they administered his IV Ig and prednisone through his new line and also drew off more blood. His hemoglobin was back up to 130. While she was drawing off the blood she flushed both lines. The smaller of the two ports was not flushing well so they decided to administer TPA (an anti-clot drug) and let it sit in the catheter for 24 hrs. We checked the line again today and it is still not flushing so they are trying TPA once more. They told us that this sometimes happens in babies because their vessels are so small one of the ports might be resting against his vessel wall. This might cause us problems when it comes to transplant time because they need two functioning ports so we may need to think about another line being placed.. but we will cross that bridge when we get to it.
Now we are waiting for his prednisone dose to be decreased enough to go to an oral dose that we can go home on. They think that might be tomorrow or Saturday. We are also being educated on proper care/cleaning of his central line tomorrow. They mentioned that we may not be able to be "discharged" but will be able to go home on a pass because there is no procedure in place for admitting us without having to go through ER yet if the units are full.
Thank you again to everyone for the ongoing support. Please continue to share and follow in our journey and keep Emerson in your prayers.
D, xo
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