A day with Odette

Some people have asked me what all happens while at the hospital with Odette, so here is my best attempt at "A Day with Odette".

I am not quite sure what time to start the day since the hospital never sleeps, so I figured that they start at Midnight as zero and go from there, so here it goes:

At midnight Odette gets her vitals taken. Vitals consist of a blood pressure taken on her leg, getting her heart rate and oxygen level which is done by putting a pulse-ox on her big toe and taking her temperature in her ear. She gets her diaper changed then and also is usually given some sort of anti-nausea medicine. Amazing enough, she sleeps through all of this!

At about 2 am it is time for some more drugs again. This is the only time a feeding tube has come in handy because you can sneak them in while she is asleep and she doesn't even notice.

At 4 am it is time for vitals again and also time to draw blood for labs. It use to be that she would sleep through this also, but her line has become more positional, so if the blood doesn't just pour out, we need to wiggle her. We have discovered that if you make her arch her back and have her head back the blood will come. After blood is drawn and more drugs are given and her diaper is changed again (We have to change diapers often to check urine output and to help with having the chemo coming out in the urine from burning her butt.) she will usually rock right back to sleep.

At 6 am it is time to give more medicines both oral and currently IV since she has an infection. It is also the first feeding of the day. She usually sleeps through this.

By 7:30 the "real" day begins. It seems like everyone is peeking in to see if she is awake so they can begin their job. Could be that the nurses change at 7. The nurse practitioner comes in to listen to Odette and do a quick overlook of her so they can talk to all the doctors and give them any information they need. I am told what Odette's blood counts are for the day and if we will need to do any transfusions or if there are any concerns, such as her potassium levels are high(they have been for about a week now.)

8 am is time for more vitals. They take vitals often because things in Odettes body can happen so quickly. If a fever is going on, it can be life threatening. Usually Odette is awake now and getting bugged at everyone who is poking at her. By now we have also had the attending doctor come in and sometimes even the resident. All of them do the "physical" overview of Odette

9am is feeding time again and we get to try real food along with her formula that is put in her feeding tube. She loves when we order from the room service menu. Especially since the past few days they have given her a toy to play with! Usually she is tired out and she will take a nap. While she naps, the cleaning lady will come in and bleach the room and mop and dust. I also usually get donuts or bagels off the hospital cart that comes around this time.

Odette's sleep pattern is random, but usually she is pretty playful in the morning. She has not had to be hooked up to the IV a lot lately because she is keeping enough fluids in her from all her feeds. We play on the mat on the floor with toys, pratice sitting up and rolling over or, if her counts are high enough we take walks in the hallway. She loves to leave the room and talk to all the nurses and techs and doctors! She is such a social butterfly!

10 am she has more medicines

11:30 ish is when we try and feed her lunch and she gets her formula at noon along with another set of vitals. Hopefully they don't find she has a fever. A fever is anything over 100. If she does, they will draw blood cultures to see if anything grows and will start her on an antibiotic for protection.

By 1 in the afternoon we have usually seen the"real" doctor for the week and asked him all of our questions, like what drugs would be best to keep using or discontinue or how is she responding to chemo or, if we are close to the end of treatment, when does it look like we could go home.

2pm is snack time, nap time and more medicines. We have tried to keep her getting some anti-nausea medicine every two hours to keep control of the puking and so far it has worked quite well.

3pm is formula time again and we play. Odette likes to sleep more during the day time than at night it seems to me. Every time you start to rock her, she curls up in your arms and with you singing, she will fall asleep. However, she loves to sing head, shoulders, knees and toes and then she won't sleep, she laughs and has you sing it for what seems eternity! It is always great to find something that she loves.

4pm is vitals and drugs once again. Don't forget a diaper change as well if it already hasn't been done. When she is on antibiotics and chemo, you have to do diaper changes frequently because she gets diarrea or pees a ton! Her bumb is famous around her for how bad it once was, and for how she now has a cute "baby" bumb. I hope it stays this way!

I almost forgot! Sometime in the afternoon or early evening is chemo time, unless things get started really late and once it was at midnight! Some of the drugs run in for 24 hours, some 1 hour and some are just a shot. It varies and she doesn't always get chemo every day while in the hospital, just most of the days. Once her chemo is done, we are waiting for her blood counts to be going up which means that she will be able to make some of her own cells and have a little bit of protection against being sick.

6 pm is formula, drugs and dinner time. She loves mashed potatoes with chicken gravy and dinner rolls. Of course you have to break the dinner roll apart or she will cram the whole thing in and then laugh!

7 pm is mom and Odettes favorite time. It is when we call the kids at home and talk to them and tell them goodnight. Each of the kids love to talk to Odette and she just smiles huge and will try and eat the phone. If the kids are lucky, she will squack a little at them. Just hearing their voices makes her so happy!

8pm is vitals and drugs once again and a new nurse comes in for the night. We usually watch tv or go on an evening stroll.

9pm is her final feeding of formula for the day and when I attempt to get her to fall asleep. Usually this isn't too successful because all the night nurses come to say hi to Odette and love her because they have their other patients taken care of. Odette definately has made some great friends here!

10 pm is drug time and mom is exhausted time. I always hope Odette is asleep by now. If not, I have been trying the put you to bed, kiss you and hope you can teach yourself to sleep. However, she must like the dark because she will talk forever to herself and laugh until she rolls and gets her legs caught out the crib. Then you start the routine all over again. It is funny, you can say "SHHH" and she'll quit talking for a minute, but then will start all over again. She is quite the turkey at night.

By 11 or so she is asleep and so am I. Ready or not, the day starts all over again at midnight!