June 9, 2004

Dear All,


I cannot believe that it has been almost two weeks since I last updated everyone.  I am ashamed of myself that it has been this long.  I would blame it on senility (after all I AM fifty now and today I received my invitation to join the AARP in the mail) but Ivy would not let me get away with that.  I do have to admit that I am rapidly approaching the point where I do not even know what day it is. 


These have been some rather trying days.  After Ivy's surgery on the 28th, she has been experiencing a higher level of pain than in the past.  Her discomfort seems to be lifting ever so slightly today (finally), but it has been a very long time coming.  It was a very hard day, especially to go into this being told that it would take an hour at the most and it took over three. Then we were told that everything went well, so we went back up to the room and were told no you can't go in for about ten minutes while they "clean her up".

We were, of course, beside ourselves...and not the least bit happy either! We then were informed (of course after the fact) that they had to use the paralytics to keep her from moving around.  She would be very dopey for a few hours after the surgery (okay, I have to admit, I expected this one).  Her blood pressure was so low that they couldn't give her the level of morphine that she was used to, so she was in a LOT OF PAIN.  Ivy was miserable and crying most of the night.  I felt like the worst dad in the world for letting it happen.


The biggest issue of the surgery was the decision to change her access catheter.  They had told me they needed to change it because it had been in too long, that it was almost certainly the source of Ivy's constant fevers and high white blood cell counts.  After they changed it, the fevers and the white counts did reduce, but only for a few days.  The procedure was not necessary and Ivy was very angry with me for signing the consent form without her having a say in the matter…she has every right to be mad at me for this.

Then, on the 30th, we were getting ready to go home for the night around 10:00 PM, but ended up staying at the hospital until 1:30 AM because Ivy was given too many meds at once and was having convulsions from them.  She was somewhat responsive to our voices at first, but quickly was so far "under" that we were not sure she would be able to "wake up" at all.

It turns out that they gave her doses of two different meds that were for two different symptoms.  It turns out that when the two of them are given together they can cause the problems that Ivy exhibited. It was horrible to be sitting at her bedside and trying to get her to respond to us, seeing the convulsions and praying to God that she would be okay.


When she finally woke up at 1:30 and we were sure she was okay, we called it a night and drove home.  The next day we were appalled to find out that after spending the 3-1/2 hours waiting for Ivy to wake up, the nurse gave her a dose of Ambien to help her sleep!  Where was her mind!?!   We were so angry at this.


Ivy was beginning to have higher and higher fevers when she came off the CRRT system after eight hour runs.  This had everyone concerned and the doctors were running cultures for several days to try to determine the source of her fevers.  Even when Ivy was treated with Tylenol (double doses) and covered in ice packs, she managed to spike a fever of 103.5!


At this point, the nephrologists decided to put Ivy back on 24 hour dialysis to keep her fever levels down while the bacteria found in her blood and her chest tubes was treated.  They have her on an inhaled anti-biotic right now for the infection in her lungs.  It is given every day and she has to be monitored very closely while it is dispensed, as it is known to cause problems with breathing in some patients.  So far, Ivy is tolerating it very well.


Over the weekend, Ivy had visits today from family and friends that really seems to lift her spirits.  One of her fellow students from college came to the door of the CCU with a plant for her.  I asked him if he would like to visit with Ivy and I think he was a bit surprised that he could visit.  As we walked back to Ivy's room, I am afraid I was wrong not to warn him of what he might expect in the area.  Ivy was happy to see him and they visited for quite some time. 


She also had a visit from a very dear friend and her Mom.  She was very happy to see her friend and I know that the visit did wonders for her.   Both Mom and daughter have a strong bond with Ivy and seeing the two of them made the day so much better.  Thank you both so very much.

Ivy's nurse on Sunday was one of her long-term caregivers.  She brought in a little stuffed black cat for Ivy that looks a lot like her own kitty.  I had mentioned to this nurse that I had been looking for a stuffed black cat for some time because Ivy misses her cat Lenore so much.  It brought a big smile to her face in spite of the pain.

Ivy also received some very special gifts from around the world as well.  Carolyn sent her a
wonderful kookaburra puppet and a crystal cube that has a Kangaroo with a Koala on its back and it is holding the Australian flag in its hands, and a card with a Koala mother and her young on it that wishes Ivy well.  I know she will treasure all of it forever.


Ivy also received a package that James put together for her.  It was so very thoughtful of him.  He sent her a novel in French, several glamour/gossip magazines, French to English dictionary and a couple of political comic books.  James also sent a little bear to watch over her as well as letters to Ivy and to Kathie and I.  She was thrilled to receive this wonderful package as well.


 Last night we had a run-in with Ivy's care-givers over her care. Because they only had one nurse on shift that could run the CRRT, Ivy was being asked to let a nurse care for her that Ivy didn't like and had asked in the past not to be assigned to her.  After a long talk with the charge nurse, Ivy agreed so long as Kathie agreed to stay the night with her.


It turns out the nurse refused to be Ivy's caregiver.  When the charge nurse told us that Ivy would have to be removed from CRRT for the night, Kathie told them no.  She told them they were not going to compromise Ivy's care.  After debating with the charge nurse for over an hour, the nurse who refused to be Ivy's caregiver decided she would run the CRRT as long as another nurse provided Ivy's care.


We left the hospital and drove home so Kathie could bring her care back to the hospital.  I went back to the hospital as well and stayed until 11:00 PM before going home alone with Creed blaring from the stereo and the moon roof to keep me awake.  I am very thankful that last night's charge nurse is Ivy's caregiver tonight and we will be able to go home and sleep for a few hours tonight.


Along with everything else, we have heard almost every day these last two weeks that Ivy is being transferred up to Cedar-Sinai Hospital.  This is terrifying to us because there is no support for families.  There is no way that Kathie will be anywhere except at Ivy's side.  I do not know what we are going to do, only that we need to make it work somehow.  The idea of Kathie spending her nights in the waiting room is not something I even want to consider. 


What is even more concerning is that Chris is two weeks from finishing his junior year of high school, probably the most important year as far as colleges are concerned.  This situation has already been very difficult on Chris, as has been reflected in his grades.  Thankfully, his teachers have been very understanding of our situation and have helped us to make sure that Chris is working to his abilities.


The surgeon from Cedars is supposed to be coming down to Palomar to go over Ivy's care and condition with he doctors here.  I think this is an excellent idea and I am only hopeful that it delays the move until Chris is finished with school for the year and we have had a chance to figure out what we are going to do.   


Okay, enough for now…If you will, please say some extra prayers for Ivy this week.  She has been through so very much and has so very far to go.  I know in my heart that with the Good Lord's help, she will come home once again…but it is not an easy road ahead…so, please keep her in your thoughts and prayers…God bless you all


With My Best Wishes Always,