Once the artery was clamped, Abigail was no longer hemorrhaging, but we then had other fears arise. First of all, Abigail’s body had gone through major trauma and whether she could come back from that was still yet to be seen. They told us it was time to wait and see if her heart, kidneys, liver, brain, etc. had suffered any long term or permanent damage. She was at risk for organ failure. Her liver was trying to process not only the blood loss, but also the huge amount of new blood products. Abigail puffed up and turned a gross, sickly yellow. She started running a fever and the cultures taken from her central line and catheter grew out bacteria. They started her on two strong antibiotics and pulled the IG (neck) central line and urinary catheter. She was still heavily sedated and on heart, blood pressure, and pain meds. She was on a ventilator.
She would suddenly start to come out of sedation and start moving, so they would do boluses of sedation meds and even give her a chemical paralysis to stop her from moving. She started doing a sad crying face one time when she started coming out of sedation (but couldn’t make noise due to the ventilator)… and that just about crushed my heart! :'(
The doctors also started to talk about the possibility of there being more arteries or blood vessels around the main artery that had burst and they wanted to block them off to eliminate the risk of another hemorrhage. On Monday, April 28 it was decided that they would go up through a main vein in Abigail’s groin, all the way to the upper GI and permanently block off the vessels feeding the main artery. They did the procedure Tuesday morning. They found several vessels that were feeding the main artery and put in a liquid that hardened (I think it is called onyxed). Abigail required another blood transfusion during the procedure.
Through the week, they kept Abigail sedated and on the ventilator. They wanted her vitals stable without the aid of meds, her liver numbers to improve, and the fever/infections to be gone before attempting to remove the ventilator or let her wake up. Finally, after 8 days and many delays… they decided she was ready on Saturday, May 3!
They took the ventilator out and she breathed on her own, but they put her on oxygen since her o2 stats kept dropping to the 80s. She was mostly weaned off the sedatives at this point, but still had fentanyl and precedex through IV. They weaned her off of those by Saturday night. They started her back on her home meds of clonidine and Valium. Unfortunately, her movement disorder started acting up. By Sunday afternoon, May 4, she was doing terrible!! She was probably experiencing withdrawal from the heavy drugs and also trying to deal with the trauma. They gave her doses of ativan and fentanyl to try and help with withdrawal, but it didn’t help at all. She wasn’t sleeping much at all and the involuntary movements wouldn’t stop. On Tuesday, May 6th, she was moved from picu to the pediatric floor. She was taken off of all IV fluids.
She quickly went down hill. She became severely dehydrated. Her saliva became thick and white. Her lips were severely dry. Her involuntary movements and insomnia were very bad. She started running a fever again. She was started on two big IV antibiotics. She had a brain MRI done late Wednesday night, May 7th, with general anesthesia. They were specifically looking for signs of brain damage from lack of blood/oxygen to the brain. The MRI showed no signs of damage. Over the next couple of days, they did ultrasounds, xrays, and scans of her kidneys, liver, bladder, hips, lungs, etc. They took blood, urine, and nasal cultures looking for a cause of her fever. They put her back on IV fluids and gave pedialyte through her jtube. They removed the femoral line (central line in groin) and tested the line itself for bacteria growth. All of the tests showed no bacteria, even after 48+ hours.
And then Friday, May 9th, Abigail was fever free! And on Saturday they stopped the antibiotics. Abigail finally slept for several hours that weekend. She was still having movement episodes, but they weren’t as bad. Also, she was more mentally responsive. She had a couple of hours of being calm and smiley on Monday afternoon and Tuesday morning. And finally, on Tuesday evening, May 13th, they discharged her! She was still not sleeping well and her movement disorders were not under control, but the fever was gone. The doctors didn’t feel like keeping her in the hospital was beneficial at that point.
We were sent home with oxygen and an pulse ox and a suctioning device. Abigail is also on a new medicine called gabapentin (neurontin). It is a medication usually used for nerve pain and seizures, but has worked for movement disorders too. Abigail has 3 different movement disorders… chorea, dystonia, and one I can’t remember the name of, lol.
It will be 2 weeks tomorrow since we’ve been home and it has not been an easy recovery. Abigail spent the first week doing quite badly. Severe cold sweats, sleepless nights, constant movement episodes, congestion, and dehydration. We started giving her pedialyte again. Then she started running another fever and so we brought her to her pediatrician last Monday. She had pneumonia! So she was put on oral antibiotics. Since then, she has slowly improved! She finally went to sleep and slept for almost 24 hours straight in the middle of last week. And she has been sleeping quite well every night (4-8 hours). She is more mentally aware, smiling some, awake and calm for a few hours every day, and though she has movements act up, none have been very severe!
She is still recovering from the extreme blood loss and massive blood transfusions, the heavy sedatives and pain killers, and all that her body went through. Her mito doctor in Seattle said that her mitochondria took a big hit and may not completely come back from this. Only time will tell if she will get back to her “baseline”. We are being hopeful and praying for God’s will. And we are praising God for letting Abigail stay here with us for now… and thanking Him for each precious moment we have with her, and especially for the moments of peace and calm for our girl!
This is part 3 of the story.
What a difficult time you've had Clarissa. So glad Abigail is sounding better, but I will pray for her & a full recovery. Her body certainly has taken a huge hit.
I hope you were able to keep well through all of this. How is the rest of your family going?
Thanks for sharing!
Blessings
Renata:)
Renata, thank you for praying! We are all doing OK,trying to settle into life with a new baby (born May 15)! BTW, I can never comment on your blog… I read it and want to comment but it never works. 🙁
I think I was able to comment from my phone… 🙂
We continue to pray for all of you!
Wow, how do you remember all that stuff? 🙂 Keeping you in ourprayers.
We continue to keep you in prayer…you guys are amazing!
I am praying for you and your beautiful daughter! I hope that her healing continues.
Traci