Maddi was discharged last night after a 14 day stay. She had lots of procedures, and hopefully this new treatment plan will be what helps her stay well. Here is the transcript of updates over the last 14 days:
Day One (8/29):
Maddi was admitted to SC Hospital this morning. We have a long stay ahead of us to get her central line placed, plasmapheresis, and hopefully shut this stupid disease up!
Day Two (8/30/16):
Yesterday was such a busy day! Maddi had an ultrasound & was hooked up to the video EEG around 5pm last night. She had a good night sleep, and now we await the MRI at some point today (pending ultrasound results), along with an IV placement since she blew two veins last night (she woke up worrying about this!) Tomorrow morning she will have surgery to place the catheter for the plasmapheresis, and then an exploratory lap on her belly to look around for anything that was missed with imaging. Once she comes out of recovery, she’ll be moved to the PICU to be monitored while she receives the Plasmapheresis, due to the complications that can arise. The number of treatments is unknown at this time, but hopefully she comes through them complication free, and then we can go back to the regular floor. Please send up prayers that all of procedures go well. Prayers that a teratoma is visible on the ultrasound/MRI and there is a clear plan for the surgery. Prayers for Maddi’s patience as she goes through these procedures.
update #2: The results of Maddi’s 12 hour EEG showed that her seizure activity is stable. It was still evident that the encephalitis was still at play, so treatment going forward should help greatly!
Day Three (8/31):
Maddi will be heading down for surgery soon. She is just agitated and “hangry.” She’s thrown just about everything in the room at me and screaming on top of her lungs. Gotta love the side effects of NMDA & steroids. 😦 I think she’s anxious, especially over the thought of getting an IV. It took 6 of us to hold her down on Monday night, and she blew two veins. They tried to give her one last night, but just the mention sent her into a full blown panic attack, and it took Jason nearly two hours to calm her down. So the game plan will be to put her out with gas, then place the IV, the Lumen Cath for the plasmapheresis, and then the exploratory surgery on her abdomen. I think everything should take 1-2 hours tops. If they find something, I think at this point it will just be a biopsy, and then we’ll regroup for later. I am praying so hard they do. If they find a teratoma then we have a cause and she’ll get better, and her chances of relapse are really low. Without a cause, I will live in constant fear of relapse. I want my baby back! I want her to have her life back! No more hospitals. No more medicines. No more IV’s!!!!! I am trying so hard to be strong for her, when all I want to do is curl up into a ball and sleep for year. I can’t even begin to understand what this is like for her. Please lift her surgeons up in prayer; that they will have guidance and clarity during the surgery. Pray that Maddi’s little body tolerates the anesthesia without complications. Pray for my mind and my nerves, as I’m sure I will replay every worse case scenario possible in my head. Pray for Jason, who is stuck at work. Pray for our family who is anxious and nervous from afar, and lastly, pray they find the tiniest teratoma so she can move on to healing.
Day Four (9/1):
Maddi’s surgical procedures went really well yesterday. She woke up early from the anesthesia, and was disoriented and confused, but after some good pain meds, she slept for a few hours and woke up feeling much better. Thankfully, she hasn’t been in any pain since yesterday and hasn’t needed any medications. The cath placement was tricky, since she’s small and her vessels are also small, but they were able to get good placement and flow. They did not find any masses in her abdomen, which is both a blessing and a curse. They sent off a fluid sample from around her ovaries to check for anything out of the ordinary. We haven’t gotten those results back yet. She slept really well last night, and has had a great day today so far! Right now we are waiting for a bed to open in the PICU so we can get her Plasmapheresis started. Since she has never had this procedure before, she will need to be closely monitored for any infusion reactions. The whole procedure takes about 90 minutes. If she tolerates it well, with no reactions, I’m not sure how long we’ll be in the PICU, but I’m hoping not long! Sleeping up there is kind of a nightmare lol Right now Maddi is in the playroom, trying to stay busy. There are some really great enrichment programs here at the Children’s Hospital, and they try really hard to be a ray of sunshine for these poor babies!
Day Five (9/2):
Plasmapheresis Number #2. Maddi tolerated the first procedure without complication. She mostly slept through it, and then around 11pm, we were transferred down to the Peds floor. The game plan will be to receive the remainder of her procedures at her bedside. They will pre-dose her with Benadryl and Tylenol to make sure she is comfortable and has zero reactions.
Day Six (9/3):
Plasmapheresis Number #3 today. Mommy is spending the day at the hospital while Daddy gets a break at home!
Day Seven (9/4):
No Plasmapheresis today. Labs showed her fibrogen levels were really low, so she was given cryoprecipitate. Of course, Maddi had an allergic reaction and was covered from head to toe in an itcy rash. She was hysterical and so uncomfortable, and it took them over an hour to get Benadryl to get it under control.
Day Eight (9/5):
Plasmapheresis # 4 today. Nurses came into her room at 4am to draw pre-labs, and were unable to get blood from her IV line. Then ended up pulling and replacing. This poor baby was screaming and hysterical. She has been poked and prodded so much. Please keep her in your prayers today. The plasmapheresis has depleted all of her energy and she is just not feeling well.
Day Nine (9/6):
No treatment today, but hoping to get a game plan for when we will be done since tomorrow is the last Plasmapheresis. Maddi is in good spirits, minus the IV change first thing this morning. Good vibes that we can be out of here by the weekend, we are all ready to be back to a normal life!
update #2: Looks like Maddi will be having surgery again on Thursday to see if they can correct the central line placement. It’s causing her to have irregular heart rhythms. They will try to manipulate it with the ultrasound, but they may need to pull it out and put a new one in! We are so ready to go home
Day Ten (9/7):
No update to post because her Team of Doctors just can’t seem to get it together and communicate with one another. I rushed here after they started tossing around the idea that they were doing surgery today…only to get here to find out, that NO ONE knows what’s going on. Just had the Kidney Doctor (managing the plasmaphersis) come in and ask me how much more plasmapheresis she would be getting…smh! Now we wait for Neurology to make a decision, but as far as I know she is having surgery on the line tomorrow (either to take it out or revise it.) They also forgot to draw labs this morning, so now have to wait for labs to come back before they can start Plasmapheresis #5.
Day Eleven (9/8):
It was decided Maddi would have her revision surgery this morning to pull the central line back. This is what the doctor’s feel is causing her PVC’s, and preventing us from going home. Please keep her in your thoughts!
update #2: They were able to revise Maddi’s central line without having to remove it! Yay! We met with the Neurology team earlier to discuss the treatment plan going forward. She will have her maintenance dose of Rituximab this Tuesday in the infusion center, then we’ll return each week for Plasmapheresis and to have her line flushed. They have decreased her steroid dose to try and taper her off (and we’ll continue to make adjustments every two weeks). She is getting hooked up for a dose of IVIG now, and then pending her EKG, we’ll be heading home at some point tomorrow! Yay!
Day Twelve (9/9):
So it’s unlikely Maddi will be discharged today. Her heart is still not functioning correctly, and the results of her echo showed that part of the central line was in the top chamber of the heart…so when they revised it yesterday, they didn’t pull it back far enough. Until the cath is out of her heart, there is no way of knowing if that’s the cause of the heart issues. The cardiologist recommends a third surgery to go back in and pull it back more. Now I wait for the primary team to see what they are going to do, but I don’t have faith we’ll be going home today, let alone this weekend.
Day Thirteen (9/10):
This has been an exhausting 24 hours. Because Maddi’s disease is so complex and involves so many different processes, we essentially have 5 different departments involved in her care. Neurology is the head of the team, followed by Rheumatology (Rituximab), Nephrology (plasmapheresis), Pediatric Surgery, and now Cardiology. Naturally, this would make for a very expansive group of brains all consulting on the same case; and with this being a teaching hospital, a hierarchy of people in each department all communicating to the person above them. On one hand, we are extremely thankful and blessed. We wouldn’t ask to be anywhere else. This hospital, the technology, and resources are some of the best around. On the other hand, this setup does not create the most patient friendly environment, and we are beyond frustrated at the lack of coordination and communication that has resulted in unnecessary procedures and a very long hospital stay. Since Maddi had her central line placed last Wednesday, she has been having heart PVC’s (premature ventricular contractions), which means her heart is having extra beats or skipping a beat. They felt the PVC’s were caused by the cath being placed too deep in the heart, and xrays showed that it was. She had the revision surgery on Thursday to pull the like back, but she continued to have the PVC’s. Two more chest x-rays & an echocardiogram showed that the cath is still in the same spot it was before surgery. I don’t know if the surgery was unsuccessful or if that the line slipped back, but from what we were told, it’s extremely unsafe for her to go home because her heart could essentially stop working. So, after escalating it up the chain to some administrators and a nurse rep, we were able to get the attendings talking one on one and a decision was made to replace the line completely. She will go back for a third surgery this afternoon around 2. Please keep her in your prayers. This is her third surgery in 10 days, and I’m scared and nervous at the impacts this will have. This poor baby has been through so much!
Autoimmune Encephalitis: Maddilyn's Story 