Today we had a 9:00 am appointment at the clinic and a 11:00 am RTU (back poke). No IV Chemo today. She will continue for 2 more weeks of 6mp (daily oral chemo) at night. Our usually nurse was off today so we had a new face, this would have been traumatic just a few weeks ago. Presley was able to sit on the clinic bed and I did not have to hold her today for her port access. She was also very excited that today mommy was going to get a port. I'm so glad the Child Life Specialist let me have a port with no needle. Shhh....don't tell Presley. I wore my port around at the hospital all day and some nurses were very confused. I just know what comfort it feels when someone else is doing those hard things with you. I always give Presley the option to do it to mommy. I don't like to go on roller coasters by myself, I don't like to go in dark places by myself. I just know that sweet little Presley must feel the same way. There is so much comfort in knowing your not alone. Presley loves to play with the "buddy" or the doll and do all the medical procedure on the doll. She is a pro!
After about an hour of entertaining her in the room, we got the results of her blood. Her ANC is 4700, whoo! All her other important numbers were good. Her hematocrit was a little low and no the border line of a blood transfusion. It was decided we would wait and see if her numbers would recover on her own. We have been up and down on that number, I assume sooner than later we will need blood! Blood is really not a big deal but it does come with the risk of an allergic reaction and it's a min of 4 hours sitting in the clinic (doctor office setting) We get next week off clinic (I think I have said this about 100 times, I'm so excited) Going to the doctors office once a week for 3-4 hours just wears you out and the thought of doing it for 2.5 years really wears me out! But with her blood levels a little low and us waning to go on a little trip Southern Utah, they will send a home health nurse to New Harmony to check her blood levels(CBC). We met a new doctor today from the Oncology group. Its always nice to met them all. We did miss Doctor Fluchel and Kristen today. These docs and nurses are our friends. We spend time, talking about and really rely on the hospital staff for so much.The doctors and nurses love Presley, she is quite interactive with them these days. I know in her little heart she knows those nurses love her and want her to get better .
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| Getting vitals checked, this is the first thing to do at clinic. |
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| Getting her port area cleaned. |
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| Port is in, no sticker yet. |
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| Drawing her blood for the CBC. |
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| Look, mommy got a port today too! |
At about 10:00 we went down stairs for the procedure. This is the 4th one in a row...so glad next week we have it off. Today I took most of my pictures while we were in the RTU (Rapid Treatment Unit). You start out in the holding room, while they check vitals. Usually the Child Life Special checks in to see if we need ipads, toys, crayons, etc. Then we talk to the anesthesiologist about how she does going under and coming out. I then walk her to the procedure room We wait for the 6 people who are in the room during the lumbar puncture. I use to hold her and they would inject the "sleepy" meds, but she goes out so fast that its hard to hold her head up, so I usually have her lay down. With in 10 sec, (sometimes we count) she is out. Then we exit and go back to the waiting room. By this point everyone involved is starving. Presley cant have food after 12:00 pm the night before and no clear liquids 3 hours before. Its a hard task, and I can't eat in front of her. This is part of the "leukemia diet for me"! The procedure itself is maybe 10 min. They just inject chemo into her spinal. The longest part of the procedure is waking up from the anesthesia. Sometimes it long (30-45) and it takes my voice to wake her up and sometimes its fast (like within 15 min). Today was about 30 min. I usually have french fries waiting for her when she wakes up and water or choc milk. The respiratory specialist watches and observing her vitals for a specific amount of time and then they flush the port with heparin and take the port sticker and port needle off! The nurse was a new one and she said "Ok I'm going to lift up your shirt and take off the sticker." NO crying, no whining! She lifted up her shirt, two pulls and the sticker was off! The best port de-access so far.
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| In our waiting room at the RTU |
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| Procedure Room |
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| And she's out! Only takes about 5 sec after they put the white stuff in her port! |
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| Playing with her pillow! |
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| Finally getting to eat after all morning of no food or drink. Fries seems to always be requested. |
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| Vital Check |
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| Sticker is coming off. I'm not holding her and no tears! It's not that I don't want to hold her its just a sign we are making progress. |
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| The sticker is off, port coming out. We get to go home. |
Presley is getting much better at walking. Someone still has to walk with her and hold her hand for support. The weakness is getting better everyday but she will occasionally still collapsed while she is walking. Presley is finally starting to sleep thru the night, the last 2 nights. Rolling over, pushing up, and and even getting her self out of the bed has helped. I do not hear that little voice say, "mommy I need you to roll me over". I only have Presley wear pull ups at night but she isback to being potty trained during the day. Glad that it didn't take too long to relearn. It has been so hard for all us to have to reteach all of these skills to Presley. But so grateful that children are such quick learners.
I'm so proud of you Presley, you are so an inspiration to so many people in your family and in the community. Your smile and bald head is the perfect combination to catch smiles from others. Everyone you met thinks you are so cute. Bald is beautiful.
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