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For this week’s appointment at Luries, Mike was not able to drive us downtown, because he is on a work trip out of the country. I am so extremely thankful to both Jennifer C’s for driving us to and from downtown Chicago so we could go to Ella Joy’s appointments and not have to take the train/ or uber. We didn’t have anyone to watch Asaph, so he was watching cartoons in the waiting room until a volunteer brought him to our triage room.
This morning, Ella Joy was feeling dizzy. She also went diarrhea about 4 times early in the morning, and woke me up because she needed help to the bathroom. I helped her carry her NG bag and held her up so she wouldn’t fall.
Please pray for Ella Joy’s lab draws. Since she got her double lumen Hickman line pulled in Seattle, she has no port or central line, and needs IV pokes every week we go to Luries for labs. She has no veins in her arms, and they need to repoke her in her hand because she also had very limited veins even in her hands! She cries every single time they poke her, and even with cold spray and J-tip, she tells me it terribly hurts her hand. Please pray that the nurses would be able to get her veins, and that He would even help them to find good veins in her arms! It would be a miracle, but He is able! For the CBC, the nurse told us there was a clot, and we would have to re-poke her! I asked Dr. Morgan if this was necessary, and she said since we come weekly, we could skip it. Whew!
Please pray for our insurance, as well as our Walgreens pharmacy at Luries. In addition to taking the kids to the hospital and advocating for Ella Joy’s appointments in clinics and labs, I had to call insurance several times and talk for hours – fighting for Ella Joy to get the meds she needs. At this point Luries is the only pharmacy that knows how to compound the majority of her meds. The problem is having to call the sch pharmacy to confirm that I only had a certain quantity of meds so I can have them refilled at Luries, and talking with insurance and letting them know I truly need certain meds that I only have a few doses of. Luries pharmacy has been getting insurance to give me vacation overrides for the meds they believe I should not be out of yet. The problem with this is that we are only allowed one over ride per drug, and if I am out of her meds, I do not want to be penalized for getting a refill when it is actually time. Please pray for a smoother transition between SCH to Luries pharmacy as well as with insurance.
Since the transplant, Ella Joy easily gets tired, her legs are weaker, and many times she needs a wheelchair. She no longer fits our double stroller. We are looking into getting a wheelchair. We are currently looking into renting versus buying through insurance. Please pray for wisdom in knowing what is best for Ella Joy.
When we got to Ella Joy’s appointment this morning, we were told no labs were ordered. This is the second week in a row! I got a print out confirming her phlebotomy this past week, but when I asked why there were no labs ordered, the response was that sometimes they disappear for no apparent reason. Please pray that that for this upcoming 3rd week at Luries, there would be labs ordered! Tacro is a time sensitive drug, and it is imperative that we get her labs drawn before or close to 9am, so I can administer her tacro at the right time. Pediatric oncology may not know this BMT knowledge, but I tried explaining it to them a second time. Praying next week labs will be ordered and go smoothly.
Thank you so much for your never ceasing prayers for Ella Joy!
“Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.” – Phllipians 4:6
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Thank you so much for your prayers! The ER was not able to find out why Ella Joy was having headaches and stomach aches.
However, she is now getting her 2nd bolus of fluids and will be able to go back to RMH afterwards.
We were almost not able to get a room at RMH this time as they are packed. We were very thankful to God that we were able to get a transplant room. Please pray that for these upcoming weeks, God would open the doors so that we would be able to get a room at RMH on the transplant floor every week Sunday to Monday.
I have to admit something … when I was packing our things to go downtown for RMH, I forgot Ella Joy’s charger for her NG pump. Her pump ran out of energy, and there were periods of time she did not get fluids. It seemed like both yesterday in the infusion center, and today at the ER, she seemed much better after getting boluses.
Please pray that Ella Joy would no longer get stomach aches, headaches, or chest pains. We are praying it would just be a case of dehydration and nothing more serious.
Today we were supposed to have Asaph start school, and Ella Joy her home tutoring, but we unexpectedly had to go to the ER. Please pray that we would be able to go back home tonight and not have to rush back to the ER.
Your prayers are like gold to us, and we are so thankful that you never give up in lifting Ella Joy up to our Father in prayer!
“I urge you, brothers and sisters, by our Lord Jesus Christ and by the love of the Spirit, to join me in my struggle by praying to God for me.” – Romans 15:30
(original post) Rushing ella joy to the er, she is having stomach pains and head aches … please pray!!!