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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, March 5, 2009

Day+259 A very bad day

Where do I start.............. first Alicia has been doing very well the last couple of days. She has had problems with her Magnesium and Potassium levels but they were finally under control and we were to be discharged this morning, just in time to be at the RMH to meet UPS to ship out our stuff and wait out the final 6 days until we were homeward bound. Lets just say things did not turn out that way and I am sssssooooooooooooooooo MAD!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I have reached my limit and I am very very frustrated.


Everything was good this morning, Alicia and I woke up early and we were in the mist of being discharged. All that was left was to pull her IV's and give her morning meds and we were out of here. I had to run down tot he pharmacy to pick up a few new meds they had put her on which took all of twenty minutes. When I walked back in to her room I about fainted!!!!!!!!!!!!!!!!!! Alicia was sitting in the bed with 9 FULL syringes full of her own blood. I immediately looked at her line and she had hooked herself to a line from who knows where. Here line did not have any blood in it so i FREAKED!!!!!!!!!!!! I asked her what did she use to flush it and she said water. Mind you I work for a water treatment company so I know everything in tap water which is full of bacteria. I grabbed the blood and started counting how much it was and it was 42 cc's she had taken. the nurse was in the room so I started asking how this happened...................... there were also needles and cbc vials in her bed so I knew she had to of gotten into the nurse server which should of been LOCKED!!!!!!!!!!!!!!!! A few minutes later Alicia started grabbing her neck and crying and saying she wanted to lay down and that her chest burned. Her heart rate went into the 200's and she spiked a fever that kept rising. All of the Docs rushed in her room and started ordering all kinds of test and was worried that she had pushed air in her line as well. I lost it. I was so livid!!!!!!!!!!!!!!!!!!!!!!!!!! This is when I looked beside her bed and it hit me that the cup Alicia said was water was the cup I had poured SPRITE in earlier for her to drink. Alicia had flushed her line with SPRITE!!!!!!!!!!


Of course it was hush hush because they realised that the nurse server was not locked, and at one point had tried to convince me the nurse said it was. I told them so explain where the needles and vials came from because I do not carry them in my purse. They could only shake their head.


Alicia is stable now. No results have came back on what all she had put inside of her. Dr Davies said she wants to watch her for a couple of days and she has not canceled our flight. I believe this is a sign from God telling me that I need to keep a much closer eye on her. I made Theo go home to his mommy, no more syringes and play medicine and I called my mom and told her to put a lock on my closet before I got back so I could lock up her meds.


I am very exhausted so I will update later. Tomorrow is going to be a hectic day I am sure because all kinds of Higher up people were trying to talk to me but I told them I was not ready to talk to anyone. I was to MAD!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

5 comments:

Anonymous said...

Thank you so much for the update. I'm so sorry that you have had such a terrible day. I will pray that tomorrow is better. God Bless

Anonymous said...

OMG!!!!! Michelle, you are always the best working through these problems. I wish I could be there to help. Thinking of you all, praying for you all....Dianne

Charisse said...

Oh Michelle! No wonder you are MAD! I completely understand. That was a very dangerous situation. The nurse or whoever left it unlocked would feel very, very bad. I know that they usually get racked over the coals for forgetting to do something like that. I am SO sorry, Michelle and I am glad that Alicia is ok. I completely understand you wanting to get rid of Theo and the play medicines. I do want to encourage you though, that children of Alicia's age will copy their nurses whether they have something like Theo or not. Alicia knows the routine. Kids are very knowledgeable and if they have been watching an adult do it over and over again for many, many days they actually think that they know what they are doing and will have a go if they can get their hands on the stuff. It would be good, even though it is very scary for you now, for you to understand ( I know you do)that Theo helps her to cope with what everyone has been doing to her. It helps her feel secure and all she has gone through is full on and she has no control over it. She is just trying to have some control. She doesn't understand. It was the nurses error. Alicia needs to understand that if she touches it for real, bad things can happen. However, she still needs to be able to cope. I know you are mad and I am shocked! How scary! I don't think it has been wrong of you to have Theo around and Alicia participate, you know? Don't beat yourself up over that because it could have happened anyway. She has still seen nurses doing this every day, including you attending to her line. She was having ago and didn't understand the consequences. However, I am not talking the situation down. The fact that the draw was unlocked is real, real bad. Isaac has attempted some things that could have killed him and when I have asked him why, all he said was, "because I know I could do it. I have been watching you". It is all to do with how children will copy no matter what. So that is why it is so important that the nurse locks the draw. This may have happened even if she didn't have Theo and still could get in the draw. I am so sorry. I know that the hospital will want to talk because of how serious it is. Mistakes are not good in a hospital. My love I wish I could give you a hug.
I have to be quite straight with Isaac sometimes about what could happen. He gets the picture though. *sigh* I am still praying that Alicia will be fine the next few days and you get home. You need a much needed break my love. Is there anyone who can help you?
I hope what I have said helped and didn't make you feel more bad. My heart is to encourage you. I love you, Michelle. Very much. I pray that this gets worked out and you can just get out of there. It must be getting very old for you being there for so long. Young children can be tiring, let alone trying to keep them busy in a hospital setting. I admire you, Michelle. You are very good with Alicia. I am not sure I know many grandmas who would sacrifice so much time. You are to be commended. Please tell Erika that I am thinking about her too. As a mother, this would be very scary to hear about and she must be feeling, as a mother, mad as well and very protective....just like you are....and I can guarantee...I would feel exactly the same way. You are doing a great job :-)
Praying.
Love Charisse

Anonymous said...

ALICIA!!! Girl! I cannot believe you flushed your line with Sprite. My jaw just dropped. You are a doctor in the making! No more poking around where you don't belong missy and keep out of trouble. Your Grandma is about to bust a gasket!

As for you Michelle, you are amazing in every way and I'm sorry you had to deal with ANOTHER scare. You're going to need a long vacation after this. But soon you will be home in your new place where you can keep a better eye on things and keep those bugs away from her. Hugs.

Momma Bear said...

Oh Michelle! I'm so sorry! I know you are fuming still but hang in there! I simply don't know what I'd do if it were me! Praying it will all be well soon!

Blessings and Big Ole Bear Hugs,