We were warned when Emerson was discharged on Aug 25th (Day +18 post transplant) to expect to be back in for a few bumps along the way. That being said, I didn't expect our first bump to be so soon..
Our first days home were amazing. The second we walked through our doors at home Emerson was more himself. His energy level was through the roof and he was so much more verbal/chatty. It was so so good to see him so happy and "healthy". We visited the Clinic a couple days after being home for a checkup and routine blood work. They noticed his cyclosporine (an immune suppressant drug to prevent graft vs host disease) levels hd fallen. Simple fix- we increased his dose. A couple days later we went in to check the levels and again they were dropping even with the increased dose. They increased the dose again. At this point he was taking the same amount as some of their larger teenage patients. It was getting harder and harder to make him take the med. Its not water soluble so they have to mix it in fish oil and the taste is horrendous. Most kids need gravol or another antiemetic before taking the cyclosporine because it is so putrid. We went in to check his levels once more and they had not budged.. Something wasn't right. With this huge dose of cyclosporine we noticed his stool begin to loosen also. The doctors made the decision to admit us back to Unit 1 on Sept 4th just so he could have the cyclosporine IV to get his levels back up. This meant packing up our day bag, all his meds, and enough toys every morning from 8-11am then go home and have to do it again for 8-11pm. It was exhausting. On tuesday morning while we were in getting his infusion Emerson spiked a fever. My heart sank and the lump in my throat was throbbing fiercely. I knew what the fever was from.. The night before Emerson had a stool that covered him from head to toe at 3am. We stripped him down and noticed that his central line caps had also gotten covered in poo. We cleaned them well and replaced the caps. Unfortunately one bacteria particle is all Emerson needs to get infected. The nurse drew blood cultures from both of his ports and they started him on heavy hitter antibiotics. 9 hours after the cultures were sent gram negative and gram positive bacteria had begun growing. We later found out he was positive for 3 separate bacteria.
The next morning Emie woke up okay but by the time JP had gotten to our room E took a hard turn south. He still had a fever and began shaking uncontrollably. He was extremely pale and tachycradic. We paged the doctors in stat. Emerson was having in septic shock. It was absolutely terrifying. The whole thing only lasted a couple of hours and then he fell asleep. The sensitivities (what antibiotic kills the bacteria) came back and we were able to switch Emie from 3 to 1 antibiotic. His fevers went down and he started to perk up as the days went on. He had repeat blood cultures drawn and finally on the third day they came back negative meaning that we were successfully treating the bugs.
Throughout all of this Emerson's stooling increased and became very loose. The doctors started to worry that it was GVHD of his intestines so they made Emie NPO (only able to drink clear fluids). If he did have GVHD his stooling would not improve with NPO. This caused me MAJOR stress.. My maternal instinct to want to nurture my babe was raging and seeing him screaming from hunger is the absolute worst. The next day they started TPN (nutrition through his central line). It helped keep him a bit more comfortable and less hungry. It was also reassuring knowing he was getting adequate nutrition and we were giving his guts a break. He was on the TPN for a total of 5 days. His stooling DID improve and they finally linked his loose stools to the antibiotic they had started.. This meant that we did not have to send him to the OR for a gastrointestinal scope and biopsy to ultimately rule out GVHD. It was a relief to not have to worry about GVHD on top of everything else and I thought it would be a simple fix to switch the antibiotics. However, there was not another antibiotic that would cover all 3 bacteria well enough and they take bacteriemia very seriously around here. So we were stuck with poop, lots and lots of poop.
Emerson was in a great mood once he started feeling better. He was very active and we spent a lot of time helping him walk around the room and follow him with his IV pole. His stooling was improving even on the antibiotic and we began talking about discharge. We also started him on oral Tacrolimus (a different immune suppressant). Its a very small volume compared to his cyclosporine dose and is water soluble so can be made to taste WAY better. Emerson even asks for more when he's finished! His first levels came back a little low so they increased the dose a very small amount. They repeated the levels a couple days after and they were where they needed to be! He's absorbing!! Finally we could see the light at the end of the tunnel.
2 days before the end of his 14 day course of antibiotics was scheduled to end, Emerson spiked another fever.. It was deja vu all over again. They drew cultures from his line, got the lab in to poke his arm, and started him on an additional antibiotic. We were back at square one.. and I was completely, utterly defeated. I have found myself saying "I can't do this" more times then Id like to admit. But theres no "not being able to" because Emerson needs us and so we just keep on. Even though we feel like we cannot possibly take any more hits, any more pressure, any more pain, we hold our heads up and keep going.. 13 hours later a gram neg bacteria began growing from his line that resembled one from his initial infection meaning his line had infected with bacteria that was getting pushed into his bloodstream every time we uses it. They told us we would be removing his line, he'd need multiple peripheral pokes and to keep an IV in place for multiple days until they were certain his blood was cleared of bacteria and they could put in a new line. It was a lot to take in and I was emotionally unstable. I spent the night feeling very sorry for myself but the next morning had my first positive thought. I was going to ask for an IVAD port to be placed instead of another Broviak line. He may have needed a port placed later on as they are much safer while at home and keep infection rates down. Instead of having his lines hanging out of his chest there will be a little button right under his skin that they can connect a line to, draw off blood, and give infusions. It would be so nice for when we are at home because we would not have daily line care, dressing changes, and he could have a bath without having to tape up his entire chest! The downside to having a port placed so early post transplant is that he is still getting weekly blood draws for another two months. This would mean a peripheral poke every time which is painful. We had discussed it and it sounded like that was the plan moving forward. Until the culture came back the next day as a completely new bacteria.. The plan I had brought myself to terms with was thrown out the window. There was now hope we may be able to salvage the line!
He was started on a new antibiotic and plans were made to ethanol lock his lumens (injecting alcohol into one line at a time and locking it in place for 24hrs) to kill any bacteria that might be growing inside the line. We started with his small blue lumen first. When we tried to get it out the next day the lumen was plugged... we couldn't get anything out. They made the decision to just push the ethanol into Emerson. It wasn't ideal but the amount was so small it shouldn't have an effect on him. They did blood sugar levels every 5 mins for 15 minutes just to be safe. He was okay and they were able to draw back blood. They ethanol locked his other lumen and began infusing through his small blue lumen. About an hour in, both channels on the triple pump and the syringe pump started screaming "downstream occlusion". His line had clotted off again. They took the ethanol out of the yellow lumen and TPA'd (clot busting drug) his blue lumen. The next day they drew a repeat set of blood cultures because Emerson was still febrile but acting like his normal self. The TPA was a success and both his lumens are working as they should now. His blood cultures also came back negative! So the only positive cultures he had was from the day he spiked his fever. The blood they drew from his arm also came back negative even from the initial positive making us believe the line was infected.
It has now been 8 days with an ongoing fever and negative blood cultures. They have no idea what is causing the fever. His stooling also increased AGAIN.. (most likely from the new antibiotics he's on) But of course it happened over the weekend and a new doctor was looking after us and brought up GVHD and wanted to make him NPO again.. JP had to warn me to cool it (I think he could tell I was about to go bananas). She agreed to not make him NPO but wanted to keep a close eye on his stooling. The only way to figure out where this fever is coming from is to remove his line. So we sit here and wait to be called into the OR. Emerson has been NPO since last night and is handling it like a beauty. I anxiously sit here and wait.. They can't give us a time but told us it would be in the early afternoon. I sit and wait to hand my baby over once again to the nurses, RT, and doctors in the OR.
They plan to take out his line and we're hoping they will insert a PIC line (peripheral central line) or at least a longer, large bore IV that can be sutured in place. This will make the next few days easier on us with not having to worry about Emerson ripping out his IV and him needing to get poked a million times. Then once we have a few days of negative cultures we can discuss potentially going back into the OR to get a port placed.
In the meantime through all this we have reached day 52 post transplant. Nothing that had happened should affect his new immune system growing inside him. His 21 day chimerism test showed of the immune cells he has 100% are from the donor ( not just his old immune cells coming back), which is as good as we could hope and our immunologist has told us he's doing as well as could be expected on that front.
Thank you to everyone for the continued support. Please pray for strength for JP and myself to get over this road bump and for a smooth OR trip for Emerson.
We WILL get through this,
D
