Today was very busy. Home Health has been her working with me from 10am to 5 pm. They are trying to figure out how it is even possible for us to be released on Monday with all of the Meds that Alicia is still getting IV. This is what they have come up with so far but I know that it will not work so I might have a hard decision to make tomorrow................
7am to 7pm TPN and LIPIDS
7am to 9am Ng Feeds
10am to 2pm Ng Feeds
9am -- 11 oral meds administered
10, 4pm, 10pm, 4am check blood sugar
1o pm give insulin
9pm oral meds--11 oral
1pm and 5pm--3 oral meds
10am and 1opm inject steroids
(this one is the worst)--mmf given at 8am, 4pm, 10pm, this is by iv and takes 2 hrs to infuse.
Also the feeds can only be put in the bag for four hours at a time so all night long I will be up to fill up the bag with feeds.
Alicia will also have to be the day hospital every day except for Tuesday to get her IVIG and Imflexamid which are both four hr infusions and she gets them twice a week along with her Ambicon and Platelets as needed.
So that will leave me from 1am to 5am to sleep, and this is not even leaving time to shower or eat or get Alicia dressed or to play or feed myself.
I know I will get tired fast but I will not know until I try. Dr Davies said it would be at least a month like this. Hopefully I will figure out a schedule that will allow me enough time to take care of my self also. If not I know it would be best to stay ere in the hospital until she was off some of the meds.
I will let everyone know what I decide tomorrow. I have a time to sit down and talk to Dr Davies. One minute I feel like I can do it and I know if I cant that I can always come back and the other minute I feel like I should just stay until I am certain and the MMf is switched to oral.
I am just very frustrated and over whelmed. Alicia is doing great that is another reason I want to leave and get my feet wet now. I know for a fact that she eats alot better at the RMH and she seems to do alot better over there. I guess I will just sleep on it.
ALICIA'S JOURNEY WITH FA
Welcome to our blog where we try to keep family & friends updated on our daughter/granddaughter, Alicia, who is one of the most adorable five year olds ever! She was born with a very rare & aggressive disease, called Fanconi anemia, which causes bone marrow failure, as well as different cancers . She is currently undergoing a bone marrow transplant to try to cure her bone marrow issues. If you'd like to gain a little more background, please visit our first entry HERE.
Thursday, October 9, 2008
Day +114
Posted by Michelle at 5:04 PM
Subscribe to:
Post Comments (Atom)
Posts
.jpg)
.jpg)
5 comments:
Thanks for the update. You guys are in my thoughts and prayers, as always. Love, Dianne
Hi Michelle,
I can completely understand your urgency to get out of there quickly. That is definitely a tight and busy schedule and one that nurses would share with shift work and all. Make your decision wisely and remember it is important not to burn out. However, you are right. You only have to try one or 2 days to see whether you can cope or not. Praying.
Love Charisse
Know that I'm always here praying!
For anyone who wants to contact me my email address has changed to prayingprayerbear@gmail.com.
Isaiah 53:3-5 He is despised and rejected of men; a man of sorrows, and acquainted with grief: and we hid as it were our faces from him; he was despised, and we esteemed him not. Surely he hath borne our griefs, and carried our sorrows: yet we did esteem him stricken, smitten of God, and afflicted. But he was wounded for our transgressions, he was bruised for our iniquities: the chastisement of our peace was upon him; and with his stripes we are healed.
Prayer Bears
Michelle, I know that you will make the right decision. You are such an inspiration to people. Espcecially myself. You CAN do this if you decide to leave. Alicia, you keep getting better and start eating for MeeMaw. We love you both so much and cannot wait for you to be out of the hospital and all of us able to get together.
Love, Reid and Abby
typing one handed...
i think that is a very difficult decision! It's great she is doing so well. I hope things continue to improve. we think of you guys often!
love,
teresa & emma
Post a Comment