From Delilah's mom (my daughter):
Lyllah's appointment yesterday was scheduled for 1pm.
All of her previous appointments in this section of the treatment haveinvolvedher being put under anesthesia for a lumbar puncture to administer chemo so we prepared for this appointment the same way with cutting her off from food 8 hours before and clear liquid diet 4 hours before.
So we woke up just before 9am for a breakfast of black cherry Jello and water before her cut off time. We left a noon, arrived at the appointment and checked in. Lyllah entertained herselfin the waiting room with a holographic projector game of soccer on the floor. After registration, got a room right away. Then the fun began.
Lyllah started off the appointment whining because she had to leave the game. Our doctor found our room without having to check the charts because she could hear Lyllah. In an effort to help, our doctor offered to walk Lyllah to the child life room to pick out some toys to bring back to the room to play with. Lyllah overwhelmed with choices and wanting to bring everything, began to go into hysterics when we stopped her from picking out toys because she had enough. Back inthe room with the first picks, Lyllah continued to kick, scream, claw and even bite Michael (her dad) who decided to take her for a walk, calm her down while the doctor and I talked about the future treatments.
We discussed medication refills, the uncertainty that comes with the first port access and the possibility of family counselling to help us all cope with the extreme changes occurring in our lives.
Near the end of discussion Michael returned with a weepy Lyllah who wanted her mama. After holding and comforting her briefly, Lyllah was back to her playful self wanting to explore the toys we had brought back to the room. The nurse came in to apply a strong, fast acting numbing cream (which I got to apply because Lyllah instructed, "I want mommy to do it.") The cream starts working in 10 minutes but they wait 30 to be safe. During that 30 minutes a child life nurse came with a giant, pink puppet, that resembleda Jim Hensen muppet that had a port in it and a doctor's kit for Lyllah to play with (under supervision) to help explain to her what we were going to do today.
During this educational time for Lyllah I found out from the nurse that she would not be going under today and she could've been eating. They promptly ordered her a tray of spagetti and meatballs with a banana on the side with goldfish crackers and apple juice to snack on while she waited. After getting to eat and play with the Muppet, a team of 3 nurses came in for the first port access.
One was the child life nurse armed with an iPadfor distraction, another was there to hold Lyllah down with me and Michael and the third was of course doing the access. The next few minutes seemed like hours of Lyllah screaming and pleading with all of us to let her go. The nurse stuck her the first time and was able to flush but not draw any blood (it was later explained the first needle was to long and created suction against the wall of the artery). They stuck yet again (this time with a shorter needle) but still could not draw back any blood.
It was decided at this point that the port was partially blocked by a clot and to stop trying to access it and talk to the doctor about where to go from there. After holding Lyllah and soothing her, the child life nurse continued to play with Lyllah so Michael and I could talk to our medical team.
We had 3 options:
1) access the port to put in an anti-clotting agent (which would take 2 hours) and then try again.
2) Come back Friday to try the same procedure
3) Draw blood with a butterfly needle now and try the access next Wednesday.
It was already 5pm and money is tight so we wanted to avoid an extra trip so we opted for choice 3. We had to pin Lyllah down again for a blood draw (by this time the 3 of us are exhausted from the afternoon) and the nurses prepared us to leave.
The nurses and doctors assured us that this was not a typical first access and next week should go more smoothly now that they know what to expect (and what size needle to use).
The only worry now is the trauma Lyllah went through will not be easily forgotten. We'll just have to see what next week brings.
My mind's scarred from trying to remember all the detailsof this. Updates tocome soonof the summer schedule/treatment plan.
Lyllah got some girly time with big sis, Destiny, painting nails, drinking hot chocolate, and watching a movie. Today's looking better and better. And no, there is nothing wrong with Lyllah's forehead. She insisted on putting a band-aid on her "short-cut." The moments that make us smile make the rough times worth it.
All of her previous appointments in this section of the treatment haveinvolvedher being put under anesthesia for a lumbar puncture to administer chemo so we prepared for this appointment the same way with cutting her off from food 8 hours before and clear liquid diet 4 hours before.
So we woke up just before 9am for a breakfast of black cherry Jello and water before her cut off time. We left a noon, arrived at the appointment and checked in. Lyllah entertained herselfin the waiting room with a holographic projector game of soccer on the floor. After registration, got a room right away. Then the fun began.
Lyllah started off the appointment whining because she had to leave the game. Our doctor found our room without having to check the charts because she could hear Lyllah. In an effort to help, our doctor offered to walk Lyllah to the child life room to pick out some toys to bring back to the room to play with. Lyllah overwhelmed with choices and wanting to bring everything, began to go into hysterics when we stopped her from picking out toys because she had enough. Back inthe room with the first picks, Lyllah continued to kick, scream, claw and even bite Michael (her dad) who decided to take her for a walk, calm her down while the doctor and I talked about the future treatments.
We discussed medication refills, the uncertainty that comes with the first port access and the possibility of family counselling to help us all cope with the extreme changes occurring in our lives.
Near the end of discussion Michael returned with a weepy Lyllah who wanted her mama. After holding and comforting her briefly, Lyllah was back to her playful self wanting to explore the toys we had brought back to the room. The nurse came in to apply a strong, fast acting numbing cream (which I got to apply because Lyllah instructed, "I want mommy to do it.") The cream starts working in 10 minutes but they wait 30 to be safe. During that 30 minutes a child life nurse came with a giant, pink puppet, that resembleda Jim Hensen muppet that had a port in it and a doctor's kit for Lyllah to play with (under supervision) to help explain to her what we were going to do today.
During this educational time for Lyllah I found out from the nurse that she would not be going under today and she could've been eating. They promptly ordered her a tray of spagetti and meatballs with a banana on the side with goldfish crackers and apple juice to snack on while she waited. After getting to eat and play with the Muppet, a team of 3 nurses came in for the first port access.
One was the child life nurse armed with an iPadfor distraction, another was there to hold Lyllah down with me and Michael and the third was of course doing the access. The next few minutes seemed like hours of Lyllah screaming and pleading with all of us to let her go. The nurse stuck her the first time and was able to flush but not draw any blood (it was later explained the first needle was to long and created suction against the wall of the artery). They stuck yet again (this time with a shorter needle) but still could not draw back any blood.
It was decided at this point that the port was partially blocked by a clot and to stop trying to access it and talk to the doctor about where to go from there. After holding Lyllah and soothing her, the child life nurse continued to play with Lyllah so Michael and I could talk to our medical team.
We had 3 options:
1) access the port to put in an anti-clotting agent (which would take 2 hours) and then try again.
2) Come back Friday to try the same procedure
3) Draw blood with a butterfly needle now and try the access next Wednesday.
It was already 5pm and money is tight so we wanted to avoid an extra trip so we opted for choice 3. We had to pin Lyllah down again for a blood draw (by this time the 3 of us are exhausted from the afternoon) and the nurses prepared us to leave.
The nurses and doctors assured us that this was not a typical first access and next week should go more smoothly now that they know what to expect (and what size needle to use).
The only worry now is the trauma Lyllah went through will not be easily forgotten. We'll just have to see what next week brings.
My mind's scarred from trying to remember all the detailsof this. Updates tocome soonof the summer schedule/treatment plan.
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