Thursday, September 17th
Today was a tough day. Avery and I were both restless last night. Her platelets dropped to 46 which led to a platelet transfusion at 3am. The frequent vital checks, along with the Benadryl effect(Avery gets super angry), and the fact that her pain medicine was due led to a tortuous hour and a half awake. General surgery came by at 5:40 to let me know that they were placing the g-tube today. After sitting in the pitch black room with the surgeon shining his phone light in my face, I quickly realized why Avery always try to kick the surgery teams. A little after 6, the neurosurgey fellow came by. 30 minutes later another general surgeon came by to get me to sign consent, and then finally our main neurosurgeon came by to check her stitches.
Luckily Avery slept until a little after 8. She vomited not too long after she woke. She was fairly quiet and kept to herself the rest of the morning.
Her ANC was 1210, so she is officially not neutropenic anymore. The rest of her labs were stable. She received her last dose of Cefapime today, and she has 3-4 days left of the Clindamycin regimen.
We took her down for surgery around 1pm. She did pretty good when we left her, but it helped that Ms. Lindsey stayed with her until she fell sleep. The surgery was fairly quick, and they were able to deaccess and reaccess her port while she was asleep(win!). A successful surgery outcome was where the good news ended and the frustration started. The surgeon was explaining the waiting period for using the g-tube...clear liquids tomorrow and feeds the next day. I asked about starting her NG feeds in the meantime, and he told me they went ahead and removed her NG tube. They specifically called me during surgery to ask if they should remove her abdominal sutures from the shunt(the answer was no), but they didn't even think to ask about removing something that we desperately still needed until her g-tube was available for use. I was livid but too tired and shocked to react until he left. So now, we have a new tube that can't be used, and our child has no way of receiving the proper nutrition(because she won't eat by mouth) or receiving her meds(specifically her sodium)! She went NPO at midnight last night, so she will be without feeds for a minimum of 48 hours. Then we also found out that despite being told that she received Aloxi yesterday(to ensure Zofran wasn't given in recovery due to drug interactions), they gave her an additional dose of Aloxi which is only supposed to be given once every 72hrs.
Avery was in terrible pain when she came back to the room. Since she won't take medicine by mouth and we couldn't use her tube, we had to switch to IV morphine. IV morphine does not last as long as oral pain medicine since her body metabolizes it more quickly. She has continued to be in a great deal of pain most of the night despite the morphine every 2 hours. They were finally cleared to give her sodium by tube around 10pm so hopefully her levels didn't get too out of whack.
Due to the Aloxi issue, they ordered an EKG to ensure there were no issues with her heart. She was in so much pain and over the entire day that they were unable to get it done earlier in the night. They are going to try again once she is asleep, but there is a slim to none chance of her sleeping through it. Pending no new issues, we should be headed home by the end of the weekend.
Tonight we received the news that our sweet friend Destiny is now wrapped in the arms of Jesus. We are devastated for her parents and all that loved her. Although we never met in person, our Chemo Families have been come such close friends. We ask questions of each other, check on each other, cheer for each other, and mourn for each other. Avery looked up to Destiny. She loved to watch her videos. She loved that Destiny loved make up, scrunchies, pretty finger nails, dancing, and had an NG tube just like her. We know this will break her heart, but we plan to tell her tomorrow when she is in a little less physical pain.
Please continue to pray for:
- Pain management
- Rest
- Quick and uncomplicated recovery from surgery
- Destiny's parents and our entire Chemo Family
- Avery's complete healing on Earth
This entire day/night was a gut wrenching ordeal for you all. I am so very sorry for all of the confusion, misunderstanding, pain, fear, and sleeplessness you all are experiencing. I send love and prayers to Avery, you and all of your family, and especially to Destiny's family. That is so sad, and I am sure Avery will take that hard. I pray for all that is on your list, and hope that you get to go home this weekend. I know being there would ease both body and mind for you both. I know Shon and the twins miss you so much. And I know you miss them and being with them at home. God has Aver…
Praying for all of you and sending love. I know it is rough right now, praying it will get better soon. Proud of you, Lori and Shon. You are wonderful parents. Give our sweet girl a hug for us please.
Joining you in prayer. I’m so sorry that they took the ng tube too early! So hard not to be angry!! Praying that they’ll get her meds and nutrition RIGHT!! P. S. My daughter was much happier with grubs.
You know every need, Father God, but we pray for pain management, rest, sleep, quick recovery from surgery, and Avery's complete healing here on earth. We pray for comfort, peace, and your perfect presence for Destiny's family as they do the unthinkable for their child. We pray all these things in the precious name of Jesus. Amen
Wish she could just think Destiny went home, which she basically did just that, her Heavenly home. That baby has been thru so much and I pray today is a better day. Hope y'all get to go home for a couple of days. So glad you keep track of what goes on with Avery but even still things get mixed up. I say everyone needs a person with them in the hospital for that extra set of eyes. Hope today goes well.