This morning, Ella Joy was feeling extremely nauseous. I had to turn off her tube feeds at 3:30am because she was NPO, and then I gave her some anti-nausea meds as well as some of the meds she could take before her procedure. Ella Joy had a bone marrow aspirate. The anesthesia made her especially lethargic this time around. She also had a ng tube replacement, and afterwards we went to radiology for an abdominal x-ray. Since she had been saying that her tummy feels fulll and watery, this x-ray will help rule out some possible complications.
Tonight, Ella Joy was crying because of the pains from her BMA. I gave her 1ml of dilaudid, but had to page the oncologist because I wasn’t sure if I could also give her oxycodone or Tylenol for her pains. After I gave her the hydromorphone, she continued to cry, and I was just about to give her more pain meds when she fell asleep. Please pray that the pains from the BMA would go away. She has had frequent BMAs in the past, but she never needed pain medication afterwards like she did tonight.
Tomorrow we have a packed day at SCCA. We start with labs in the morning. Then we meet with the nutritionist. Afterwards, Ella Joy will get another EKG (since the QT intervals are prolonged likely due to voriconizole). Then, we have an appointment with clinic and her post BMT team. Then we shuttle back to SCH for another CT chest scan. Please pray with us that the nodules will be gone and that we would hear the best news possible after they read her scans for tomorrow!
Thank you for praying for Ella Joy and keeping her in your prayers!
“Those of steadfast mind you keep in peace—because they trust in you. Trust in the Lord forever, for in the Lord God you have an everlasting rock.” – Isaiah 26: 3-4
Day + 29
The day after we discharged, Ella Joy had been very nauseous, and when we were in clinic at SCCA, everyone noticed she did not look very well. She was throwing up and she also had a bloody nose. I had to give her dilauded a couple times for stomach pains. Since then, Ella Joy has continued to feel nauseous, but she is slowly seeming to get better.
We had an appointment with infectious diseases. They noticed after her PT chest scan that there were new nodules in her lungs. They are thinking it is fungal, but there is no way to know for sure unless they put a camera down there. They will get another chest CT scan in a week and decide if they want to do the camera. Please pray that these new nodules will not be anything serious, and please pray that as we continue to give her voriconizole, the nodules will soon go away and disappear.
Another thing I noticed is that during the last 2 labs Ella Joy had at SCCA, it was harder to collect her blood. She had to be asked if she could give deep breaths and move her arms around in order to collect the amount she needed. Please pray that there would be no serious problems with her double lumen Hickman which goes directly to her heart!
In addition, Ella Joy has been saying that her tummy feels full or watery. We will be getting an x-ray to make sure this is not due to any serious complications. Ever since she got her NG tube, she has said this, but the degree is seeming to get worse.
I always encourage Ella Joy to walk short distances to get some exercise, but the last couple of days, she asked for the wheelchair even though we walked very short distances. She told me that her legs were sore. Please pray that God would give her strength and healthy bones to be able to be as active as possible. She is continuing to take calcium carbonate to strengthen her bones.
Today, we saw Asaph off to the shuttle bus to go to Hutch summer camp. About an hour later, Ella Joy asked me where Asaph was. I told her he was at summer camp. She told me that she had forgotten. I know the radiologist told me that sometimes it takes a year to see the forgetfulness and slower thinking processing, but it really alarmed me that she had forgotten that Asaph went to summer camp as he usually does. We played Battle Ship and she totally beat me as usual, but she kept forgetting when it was her turn, and at times sat there waiting until I reminded her it was her turn. Please pray that this would only be short term forgetfulness, and that God would help keep her mind sharp.
A few additional prayer requests … please continue praying Ella Joy would not develop any GVHD. We are also keeping her out of the sun (with lots of sunscreen) and long sleeves in 90 degree weather! The sun light on her skin can start up GVHD!
Please pray that Ella Joy would slowly but surely gain an appetite and when the timing is right, we can slowly wean her off her tube feeds. So far, she is only sampling different foods, and taking one or two bites. Please pray that in addition to weaning off of tube feeds, she would also be able to wean off her night time IV fluids and drink enough on her own and take magnesium orally without any diarrhea.
Thank you for remembering to keep Ella Joy in your prayers! She is doing remarkably well for being discharged at day +22, and seeing that we have only been out for one week, we know it is the prayers of God’s people that encourage us and help us during the most challenging times.
“I sought the Lord, and he answered me, and delivered me from all my fears.” – Psalm 34:4
7/24/17 Mon. Day +21 (original post)
White blood: 1.9
Tonight is the last night we are here! Tomorrow we will be discharged. Ella Joy will see our RMH isolation apartment for the first time tomorrow night! I tried to unpack everything in the last few days so it would be ready for her, especially the shelves of medical supplies and meds!
Ella Joy was feeling nauseous again tonight, and she threw up her feeds again. Please pray for her nausea to subside, especially as we are getting ready to be discharged tomorrow. We will have lots of appointments at SCCA where we take the shuttle, and I am praying that she would not be nauseous for the shuttle rides, especially after giving her meds.
I had a refresher course for night IV fluids. I have a plan that each night I will give her a bath, then start the IV fluids, and then four hours later, hep lock both lines of her double lumen Hickmann. I just need to make sure I have a complete schedule up with all her meds and the times with reminders on my phone, and if I am going to shuttle to SCCA, I need to remember to bring the meds and syringes along with me. I may even have to re-administer them to her if she throws up on the shuttle. Note to self, I gotta bring the puke bags everywhere we go.
Please pray for our 100 days of isolation. I know it will be hard on Ella Joy and Asaph. They are at an age where they love playing with their friends. After tonight, it will be only our family hanging out in our isolation apartment. Please pray that they would not complain or feel sad, and may they know this is necessary for us to keep Ella Joy safe from germs.
Please pray that I would be able to give Ella Joy all her meds through her NG tube without any troubles. I know the key is pushing the syringe slowly. Please pray that I would not forget any meds, and that in addition to her feeds, I would learn to be proficient at giving her IV fluids at night too.
Please pray that Ella Joy would not have to be re-admitted for any fevers or GVHD. If we need her to be re-admitted, it would disrupt Mike’s work schedule and Asaph’s going to school. We are praying for things to go as smoothly as they have been going.
And as always please pray for ZERO and NEGATIVE, and absolutely no relapse!
“Progress” is from the Greek term prokopen, derived of two roots (pro, “forward,” and kopto, “to cut”). When I think about Paul’s 2-year Roman imprisonment, I see that in the midst of his troubles, Paul had the right attitude and outlook. He saw opportunities to advance the gospel. In our isolation apartment, please pray that I would be able to find opportunities to raise 2 little Kingdom workers. Please pray that each day would not merely pass by, but it would be an opportunity to make progress and to grow in the Lord. Whether we are praising Him with worship songs, or reading the Bible, may we like Paul move forward in sanctification. May we continue cutting through obstacles by His mighty power. Each day toward 100, may we make spiritual prokopen or spiritual advancement.
We are so thankful to God that we are able to leave at day +22! We know armies are praying for Ella Joy, and couldn’t be more thankful!
“Our prayers for others flow more easily than those for ourselves. This shows we are made to live by charity.” – C.S. Lewis
“Praying at all times in the Spirit, with all prayer and supplication….“ – Ephesians 6:18