Dr. Minnie Mouse stopped by yesterday to check up on Kaley and brought a goodie bag
The last I updated you, Kaley was supposed to go in for a procedure on Tuesday night after getting another blood transfusion to drain a couple abscesses they had found and was in a large amount of pain. They came in Tuesday night to say the procedure had been moved to Wednesday morning because all the team members had left for the day. Needless to say, I was NOT happy and a few managers had to get involved plus I had them call her GI dr at home but unfortunately they could not get it done that night. They told me it was scheduled for 10 am so I made sure they would give her good pain meds all night long to keep her comfortable. Sadly, even on the pain meds, it was unbearable for her 
Wednesday morning came and it was after 9 am and I hadn’t heard from any Drs and was very frustrated that I didn’t know what was going on. Finally, the GI dr came in around 9:30 to say she had been on the phone all morning trying to get things finalized and the procedure would be at 1:00. UGH now 3 more hours of Kaley having to be in pain. Again, I wasn’t happy. Luckily, about 15 minutes later, they came in to say there was a cancellation and they moved Kaley to the top of the list. THANK GOD !!!!
The results of the procedure to drain the abscesses actually revealed that there weren’t really “abscesses” but just a lot of fluid around her inflamed/irritated organs which in a way is a good thing but painful nonetheless. Basically they think she just needs to rest all those organs and keep reminding me that this was MAJOR surgery and very painful. They have to cut a TON of membranes that hold the intestines to the abdominal wall and that in itself is painful. Then add in the fact that she has pancreatitis from some of the meds she was on for her colitis and there is just a lot of painful things going on inside her. I have been on message boards and had friends talking to other friends that have had this surgery and they ALL say they were in pain like this after the surgery for many many weeks.
That day was probably the worst day we have had since the day she had to be rushed to emergency surgery. She was in SOOO much pain and her pain meds weren’t even putting a dent into cutting the pain; she was in tears and screaming and I was heartbroken and pretty much telling nurses that she needed more meds and that I didn’t care if she was already maxed out. NOT A GOOD DAY.
However, yesterday (Thursday) was a much better day painwise. They got a Fentanyl patch for her to wear that releases pain meds constantly so she doesn’t have the spikes of pain and is no longer on morphine which had stopped working for her anyway. She didn’t complain of pain even once yesterday and was back to her smiley self (this girl is amazingly strong I tell ya).
They let her start eating “liquids” again like jello, Popsicles, applesauce, etc but all she has wanted is some water. She is still on the TPN (which is the IV nutritional food) so she is getting all the nutrients and proteins her body needs. She even has gained a few pounds back (she had lost over 20 lbs since getting sick and was tiny to begin with). NO word on when we are getting out of here though.
We did get GREAT news from Hospital Homebound. All her absences and grades will be wiped out completely and even though they don’t offer HONORS classes, she will take the reg classes through their program and get grades which transfer over to her school. We can do this program the whole school year since she has 2 more surgeries to complete still. And when she is up to it, she can go half days to electives like band and student government. When she isn’t feeling well, they understand. There are no deadlines for any work and her credits will be given when she completes the classes no matter how long that takes. This was an answered prayer for sure !!!
Minnie Mouse brought a Dori stuffed animal so now I keep telling Kaley “Just Keep Swimming, Just Keep Swimming” and we will get out of this hospital soon !!!
So sorry for all that is going on, Kaley is one strong girl. Thanks for the updates. We are all pulling for a speedy recoverey.
Just keep swimming!!!!
So glad to finally hear a little good news!! It is wonderful that the patch is working, and the whole deal about school is awesome!
Will continue to keep her in my prayers, as well as you, Kyle and your family.
How old is Kaylee?
May God continue to sustain you through all this!
PS. How is her throat?
she is 15.
her throat is still sore, the strep test came back negative so they said they would check for mono but I haven’t heard any result (which I assume is a good thing) I guess its probably just like tonsilitis or something like that and not a virus
I’m so glad they were able to get to her surgery, and that’s wonderful news about her school, thats one strong girl you have there, we will continue our prayers!
I have been keeping up with your daughters story, and I hope she recovers quickly! I can’t imagine how hard this has been for your entire family. I also have to let you know how much I admire you for your strength throughout this entire ordeal. You are amazing, and I am sure your daughter is staying strong solely due to your example and love. Sending cyber hugs your way!
-G
My heart is breaking to hear how strong she is through all of this as we all know that there are many of us who wouldn’t be. I know this is tough on you as a Momma and I am amazed that you have been able to hold it together. I would be pulling a Shirley Maclain in Terms of Endearment, if you know what I mean. My dd is a senior in high school, so I praise the school situation right along with you.
Prayers and healing thoughts for Kaley.
So glad to see her smile, she is a strong girl and you’re super strong mom.
We are so glad that her procedure went well! You are in our thoughts and prayers! She is so amazing! Stay strong mom!
You are one strong momma! My heart breaks every time I read an update even if it’s a good update, you are all going though so much. She is one tough cookie! Prayers and hugs!
Glad to get an update. I have been offering our prayers for your family.
Hugs and Kisses for Kaley. So happy to hear that the school with work with you.
Amy,
I am so glad Kaley was able to get the procedure done. Also, it is good to hear about the school situation. I am continuing to pray for you and your family. Glad to see you smile, Kaley!
This all seems like a bad dream for you. I can’t help but cry at each update. As a Mother I want to fix everything for you and Kaley, I am so sorry this is happening. Kaley looks so beautiful, through it all. Thankful is an understatement that her school will be working with her, but we know that the grades are not why children go to school, she is missing out on all the things she loves. Can’t help but think our Father in Heaven will replace all this pain with something very exciting and wonderful for your family. Hold tight Amy, this too shall pass.
Becky in Orlando
I keep you and your family in my thoughts, thinking strong positive thoughts for you “little” girl. Thank you for all you do. I so appreciate that your still able to function with all the stuff that is happen to your family. Positive energy sent your way. Baby, just breathe!!
very happy for both of you !
Oh Amy. My heart is just so broken for you and Kaley. I hate that your sweet girl is still in the hospital but I am thankful that she is finally starting to get on the road to recovery. I love that Minnie brought the Dori fish. That is so fitting for both the “Just Keep Swimming” and the connection with Ellen.
I am continuing to lift you all up in my prayers!
I know, I loved that it was Dori of all the Disney characters !!! I posted the picture on Ellen’s facebook page with the little “just keep swimming” message that I keep telling Kaley
My heart aches for you and your family. This is exausting. I know how it is to have someone in the hosp long term. It drains everything out of you. My prayers are constant for you all. I am glad about school for Kaley. It will keep her mind busy. THANK YOU very much for thinking of us during this difficult time!!!! You are selfless and we are blessed to have you.
That amazing smile is fantastic to see again…you are right….Kaley is amazing and has been through way to0 much for anyone to endure…glad that it was fluid and that she is back on the mend…also glad she can catch up with school work and still be involved at school when she feels like it…hope you are home and she is doing well really soon…thanks again for taking the time to update everyone..as always sening positive vibes often…take care
what is the address and room number? we live in wisconsin and would like to send a card.
Walt Disney Pavillion @ Florida Hospital for children
601 East Rollins Ave
Orlando FL 32803
Room 7301
Again, So Sorry you guys are going through and extremely trying time. I’m glad to hear and see through your posts things are progressing. Keeping you in my thoughts and prayers. Its extremely difficult to watch someone going through such a hard time and feel powerless and or defeated in being an advocate but, God is Good and he will rescue you guys out of this and be your shield and help. Keep looking up! Blessing and Peace to you and Kayley!
She is so brave and strong, God bless her, every time i read about her i feel like crying, but things will get better.
Thank you for posting these updates for your online family. You and Kaley are so very often in our thoughts and prayers…….praying for good health, continued strength and the speediest of recoverys. So glad the school is working with you.
Amy, my thoughts and prayers are with Kaley and your family.
Did you ever get that second opinion?
well as soon as the female GI dr came back, we started doing more tests and got things moving in a better direction so I really wasn’t wanting to go find anyone else after she came back. The male GI dr comes back tomorrow though but now I think we are just at a point of recovering from the surgery and getting her insides to heal so she can sart eating and we can go home
Still praying….
I am glad to hear Kaley is doing better after such a bad week. As a mother, I know how hard it must be for you to see your child in pain and you can’t fix it. Your and Kaley’s strength through all of this is amazing and inspirational. My family and I will continue to keep you all in our prayers.
I am praying and sending healing vibes to Kaley and your family. This is such a difficult situation and you have handled it with such strength and grace. I admire both you and your daughter in your fights and wish you the best.