Monday, October 7th
Avery's had an overall OK day. She has still been vomiting 2-3 times per day, but doesn't seem to suffer from nausea in between each episode. We stopped her Reglan, so now she is only receiving Benadryl(every 6 hours) and Zofran(every 12 hrs) for nausea.
Her Mexthotrexate level had dropped significantly since yesterday It was at .28 today. With a goal of below .1, there is a chance we might get to go home tomorrow. She received another magnesium bolus to restore her depletion, and they have upped her Leucovorin from every 6 hours to every 3 hours due to her kidney levels.
Due to the bacteria found(Staphylococcus epidermidis) , Avery will require a 10 day course of IV antibiotics. We were given the choice to administer them at home or to stay an additional 10 nights in the hospital. We are choosing to go home and will be trained and given the proper equipment to give the meds. This is extremely nerve wracking as she will come home with her port accessed. This also means they will have to deaccess her port and reaccess it again before we go home as they will only leave it accessed for 7 days at a time due to risk of infection.
Her bloodwork showed she was a little anemic today as well, so she received another transfusion of red blood cells. The Tylenol and Benadryl given beforehand always knock her out, but when the transfusion is complete, she looks and feels so much better.
We headed to the claw machine(not a winner tonight) and to play air hockey for a little bit after her Daddy arrived. It is a two person job pulling a wagon and pushing a loaded IV pole across the hospital. We are taking every chance we can get to get out of the room. We know that by the time we go home, her counts will be plummeting, and she will not be able to go anywhere or see anyone.
We're hoping for a better night of rest today. Between her fluids and feeds, she is getting 190mL(>6oz) per hour. This means multiple trips to the bathroom throughout the night which interrupts her sleep and leaves her very agitated at me.
We are excited about the prospect of coming home, but we also know that things can change quickly. For now we will focus on tonight and be ready to take on tomorrow no matter what it brings.
Please continue to pray for:
- No more vomiting
- Fully clear the methotrexate tomorrow
- Kidney function to return to normal
- A good night of rest
Praying for her! Praying for her family
Glad she’s been able to get out of the room for a little while. Hoping you’re getting some sleep too. Continued prayers for all of you. ❤️
Two steps forward and one step back! So thankful for the good news and if you all get to plan to go home, maybe that will encourage Avery to accept the deaccess and reaccess with grace. She is one strong little lady with a perfect smile. Prayers for strength, comfort, and rest as you anticipate a visit home.
We pray for this sweet baby girl and for family fervently! And it will continue! ❤️
Prayers that sweet Avery will have no more vomiting, that she will be fully cleared of the methotrexate, her kidney function will return to normal and that Avery, Mom and Dad and sisters will all experience a restful night. Father surround them with peaceful sleep so they will all wake rested In the morning.