Saturday, August 12, 2006

Dear All,

Thanks so very much to so many of you for taking the time to email and ask about Ivy...I have been VERY BAD about updating the site...Kathie actually had someone call her the other day and let her know that nothing has been updated since 2005...I'm so very sorry for that fact. Work, and life in general, has been very demanding…not trying to make excuses, just hoping to explain somehow.

What I am attempting to do in this chapter is to provide a “snapshot” view of how our lives have changed since Ivy has come home. It is taken from posts at the site and from searching my memory (not a whole lot of information in that “black hole” I can tell ya!...LOL). It may be a bit hap-hazard, but it hopefully will serve the task.

I WILL return and write about Ivy’s time in the IMC. It is an incredibly important part of Ivy’s journey home and needs to be covered, but I think that it is more important to bring the story to current times first, then address the IMC…please know that I am forever indebted to the nurses and staff of the IMC. This group of people worked so very hard to see to Ivy’s needs and to get all of us through this…I am forever in your debt…

On to the story…

It was September 21, 2005 that all our lives took a dramatic change. I had taken the day off and was running all over town to make sure I could get the 26 different prescriptions filled for Ivy. I had to go to five different pharmacies before we finally found one that could help us with everything necessary to set up all the prescriptions. It took over 1-1/2 hours just to get everything in the system (my deepest thanks to the staff at SaVon)!

Then it was home, straightening everything up and setting up a banner welcoming Ivy home on the garage door. Ivy had received flowers from all over the world and they were arranged in her recovery room (Ivy’s uncle Richard and I had spent many hours getting this room done for her). Poor Kathie was facing the check-out from the hospital all by herself, which had to be an almost impossible task.

It was about 3:00 PM when Kathie pulled up in the driveway. Ivy was sitting in the passenger seat (very uncomfortable I’m sure) and Michael was crying his eyes out standing on the lawn. I can only imagine how it must have been to be able to “see the world” once again after spending over 21 months in the hospital.

We had so very much to learn moving on from that day…we were facing a whole new team of doctors, adjusting to meeting her needs in the home, and an entirely different way of life…We all sat at the dinner table and had dinner as a family the first and second nights, been a very long time since we have been able to do this…incredible.

It has been a couple of weeks now since Ivy cam home…Ivy is doing okay, but we are having a very difficult time controlling her glucose levels, which has been especially difficult with her vegetarian diet. There is an incredible need for protein so that her body can heal, but vegetable sources of protein are lacking and we are forced to use protein powders to meet her needs.

Unfortunately, they are typically high in carbohydrates which increase her blood sugar levels and require more insulin to treat. This is probably the biggest issue we are now facing. We need to find the balance of foods that are low in carbs and still offer enough protein to maintain her healing.

We also had to make changes to the oxygen service to make sure we had enough tanks on hand and to see that there was a spare regulator for a second tank. Because of the numerous doctor visits, we need to be able to keep a LOT of tanks at home and in the car. We use an oxygen concentrator in the house, but the unit will not work without power and leaves us on tanks only during a power outage. Just another thing to be worried about…

The bed they provided for Ivy was also wrong and causing her a lot of discomfort. We now have the air mattress, but it doesn't fit the bed frame correctly so the side rails are now an issue and cannot be put up. Time to take the rails off and hope that Ivy doesn’t roll out of bed at night!

Chris is now off to college...I spent Saturday with him at UC Riverside to make sure he had everything he needed. Saturday evening, when Ivy's glucose was cooperating, we decided to go out for a while.

Since Ivy had not seen Temecula in two years, there were a LOT of changes to share with her. She wanted to go to Cocos for some soup, but Temecula's Cocos had closed. We finally ended up at another restaurant where Ivy, Kathie and I all enjoyed a meal.

Sunday, after Uncle Richard and I finished our work on the laundry room, We decided to take a trip to Riverside so Ivy could see her brother's dorm room and take a look a the campus. While it was a brief visit, we were able to all enjoy a family dinner together before dropping Chris off on campus and heading back to Temecula. We made a quick stop to visit the Halloween department at Big Lots where Ivy got some socks (some to send to "Boo" too)!

We are now being told by the “powers that be” that Ivy’s support coverage may be in jeopardy because she is “leaving the house for other than doctor’s visits”. I had never heard of something more ridiculous than this, but it is just one of the many problems we are now facing.

As it turns out, the Federal Government had addressed this issue for Medicare / Medicaid patients and had determined that these were “medically prudent” for mental health and well-being issues…the problem seems to have gone away since I told Ivy’s case manager that this was the case.

Probably the biggest ongoing issue for us right now is the fact that I need desperately to finish the laundry room and bathroom swap that has been "in progress" for far too long.

I have been spending almost every free moment working on this (with some wonderful help from Uncle Richard). We are getting there, but it is very troublesome to both Kathie and Ivy that there isn't a bathroom downstairs for their use. It has taken far too long a time, but the bathroom is now functional as of April 2006.

There is no tub surround, no paint on the walls and the flooring still needs to be installed, but there is a functioning sink, a toilet and the tub works! Now I need this heat wave to go away so that I can get the flooring installed (I need to take care of the slab (cracking) and float the floor before I can install the tile.

In my reviewing the posts at the site to try to make this as complete and up to date a chapter as I could, I came across this post from one of the IMC nurses…it offers so much that I had to include it here as well…It was posted October 3rd 2005…

“I wish everyone who reads these posts about Ivy could see just how much effort it took to get Ivy home. It was a fine balance of love, dedication, and most of all strength on Ivy's part. Watching Ivy pass her goals everyday on the IMC was awesome! This young lady will never be forgotten. Ivy you have touched my heart forever! I know you have battles everyday... but you are strong. Just look what you have conquered! Absolutely Amazing!” To the nurses and staff of the IMC…Thank you all so very much…

It is now November of 2005…Ivy continues to "settle in" as we try to establish a routine. Her labs are looking good, but glucose levels remain the hot issue. She has met her new doctors now and we are trying to make adjustments to totally different approaches to Ivy's treatment. This is a bit concerning to us, as is any change, especially when we were making progress as things were.

Ivy has spent a day shopping at the mall with Kathie and Chris, been to dinner several times and even to one of the local coffee shops for some good coffee. I think that getting out and about is a good thing for Ivy, but it has proven to be a huge strain for her as well, especially emotionally.

It is very easy to understand her discomfort as people (especially young kids) stare at this young woman in a wheelchair, breathing through an oxygen mask, as she passes by. Ivy feels their stares and it is emotionally draining for her.

If they only understood what this young woman has been through, I am sure that they would be astounded at her strength and in awe of her progress, as we all are...

There are just so many things that complicate our day-to-day routine, but they are all getting worked out.

Ivy continues to get stronger physically. Today, as I helped her out of her wheelchair and onto the couch, she stood almost entirely on her own. This is wonderful.

The Peritoneal Dialysis seems to be controlling the kidney function pretty well. Thanks to Kathie's constant monitoring (poor thing hasn't had a night's sleep in almost two years now), we have not had to make the trip to the emergency room that one of Ivy's doctors at Palomar said would happen…well, at least not yet..

According to the nurse who does Ivy's weekly blood work, her labs look very good (for Ivy) and it seems that things are going pretty well over all. I am a bit concerned though. I am very worried that perhaps Ivy's lungs are not doing as well as they were while she was still in the hospital. She almost never comes off the mask to use her nasal cannula anymore…I am so hopeful that this is not the “status quo”…

Making improvements to her breathing is paramount to everything else as far as a recovery goes. The new nephrologist has requested that Ivy be seen by a pulmonologist, but it has to be approved by her IPA (medical group we are assigned to) before Ivy can be seen. Again, things were so much easier in the hospital when all it took was a call from the nurse and the doctor was on his way…

Just the pharmacy alone is an experience and a half as I try to keep track of 26 different meds (I can't, but Kathie can tell you which one is which and what the dose is too). I need to go back tomorrow and pick up the last of them for this month.

But, all in all, it is wonderful to have Ivy home once again. I just have to keep this in focus as we constantly battle to make things happen for Ivy. I know I make at least a phone call a day to try to get things either set up or corrected as part of Ivy’s care. Kathie is also dealing with the phone calls as well as taking care of Ivy day and night.

It was January of 2006 before the next addition to Ivy’s status was recorded on the site… With the holidays behind us, we seem to be finally settling into a routine…a very busy one, but a routine just the same. It seems so…normal to arrive home each night to see Ivy and Kathie at home. We are only a few days away from the end of our fourth month at home…five months ago it was only a dream…WOW!! We really have come a very long way…

Today was one of the many visits to the doctors for Ivy and Kathie (we have another tomorrow that I will be going to as well). It was her monthly visit to the nephrologist this time, and Kathie called to let me know that we have some very good and promising news.

It seems that Ivy’s kidney function has almost doubled over the last month! In November, it was functioning at about 14 % and this time, it was improved to 28 %!!! Her doctor is very excited and feels Ivy could improve to the point where she no longer would require dialysis treatment! Super exciting news!

We (Kathie and I) have been very worried that Ivy’s lungs may have been getting somewhat worse. Very frightening thought to say the least…because any improvement in Ivy’s condition would only happen with an improvement in lung function (Ivy had only 13 % of her lung in a functional state at the time she left the hospital).

The fact that Ivy’s kidneys are improving has us both (all three…er, make that 4) thinking that there HAS to be an improvement in her lungs as well. I sure hope to God that there is!!

Ivy and Kathie have both had some incredibly difficult nights this last week or so when Ivy’s saturations would drop so low that Kathie would have to increase her FIO2 up to 8 liters a minute to keep her oxygenation in the mid eighty percent level. Anything above six liters is considered toxic to the lungs and will damage lung tissue.

With Kathie taking care of Ivy’s needs 24 hours a day; it is amazing that she is still able to manage to get through the days. {Michael isn’t a whole lot of help when he’s 80 miles from home I tell you). I am totally amazed that she has managed to do this for almost four months now.

Not only does Kathie provide her daily care…nutritional needs, wound care, bathing and clothing, getting her meds in her on time, but she also has to schedule all of her doctor’s visits and to review her medications to ensure that progress is being made. It is so much more than a 24 hour a day job…she is a miracle worker everyday.

A note from March 21…Yesterday was horrible for Kathie and Ivy with a multitude of problems that plagued their day. After running errands, I arrived at home about 8:00 PM. We got dinner ready and were about to give Ivy her insulin when Kathie saw what appeared to be huge bruises all over Ivy’s abdomen. When looking lower, around Ivy's dialysis catheter, Kathie saw the skin was beet red and swollen.

We went to the Emergency room and were there until 3:30 AM in the morning. They ran some labs and sent us home...nothing specific that they could see and labs that were "okay". We are not happy with the diagnosis, but we head for home, knowing there is nothing else the hospital will do.

We started Ivy’s dialysis at about 4:00 AM only to find a very heavy amount of blood pooled in her peritoneal cavity. Ivy had been having issues with this for over two weeks, but it seemed to slowly be getting better and the doctors were not overly concerned. Now we are scared to death.

The next day I am at work. Kathie just called me to let me know that Ivy is on 10 liters of O2 and only able to saturate at 90%. We are terrified. I am leaving work right now to head for home and Kathie is getting ready to go to the emergency room once again.

Brand new hospital, brand new doctors, brand new nurses...and no one even begins to understand what this is doing to any of us…

And from the 24th of March…It was Kathie who researched the meds to find one that could be responsible for the bleeding and sudden, unexplained bruising that sent us to the Emergency room...

Two of Ivy's many doctors were appalled that Ivy was released from the hospital when her WBC's were so elevated...but, in many ways, it was for the better.

When I posted the last note, I was on my way home to head for the Hospital. Ivy's saturations were horrible, there just wasn't any choice.

Before I made it home, Kathie decided to change Ivy from the concentrator to tanks of oxygen. It wasn't long until things began improving. She was still a long way from doing well, but it was a big start.

We went to the dialysis center to allow a fluid draw so that we could take a sample to the hospital with us for them to analyze. When we arrived at the hospital, there were no parking spots, so I left Ivy and Kathie in the car (parked illegally) and went in myself.

There were at least 80 people crowded in the waiting area. There were several people throwing up {flu}. The nurse told me that they would not accept the fluid unless Ivy was admitted...she also told me it would be at least four hours to be seen by the triage nurse...we left and took Ivy home.

She did much better that night, and last night, her dialysis fluid had no blood in it for the first time in three weeks...this doesn't mean that we are in the clear, but it is the first positive sign in a long three weeks...

As it was later determined, it was one of the medications that Ivy was taking that was the cause of the internal bleeding. Kathie researched the drug on the net and discovered that this was a “common” side effect, especially in extended use as Ivy had been using it.

Thank God that Ivy has Kathie looking out for her. I don’t mean to make light of the care she receives from the doctors she sees, but there are far too many different opinions among the doctors and they do not communicate between themselves, so we never know what the right approach to Ivy’s circumstances is.

The middle of May…We had some very special things happen for Ivy around her Birthday, including being the guests (the whole family) of the band AFI at KROQ's (an Orange County CA radio station) annual weenie roast show. There were a LOT of bands, but I can honestly say that AFI was by far the most popular of the bands I saw...they were awesome in concert.

Before they went on stage, we met with all the boyz. Ivy had brought them some gifts and the boys all gave her an IPOD Nano and a copy of their latest single (Miss Murder) for her was deepest thanks to Davey, Adam, Hunter and Jade as well as the two wonderful ladies who made this all happen for Ivy and us all…they are so incredible to Ivy and it honestly makes a huge difference to all of us.

It was at the Verizon Amphitheater in Irvine, so we needed to rent a vehicle that was big enough to carry everything we might have needed. I had over twenty tanks of oxygen in the back of the mini SUV, plus almost everything we could possibly need to handle any situation.

KROQ and the band made sure that all of us had back stage passes (I had an all access pass that would let me leave the venue to get oxygen tanks) and had even thought to set us up with VIP parking so that I could park close to the amphitheater. We are all so thankful for all that AFI has done for us.

Before I forget to mention it, for everyone who was so kind to send a card or post a note to remember Ivy's day, thank you so much...I can honestly tell you that each and everyone of the cards means the world to Ivy…they are ALWAYS a big help to her.

Not as an excuse, but possibly a bit of an explanation…my time online has been all but non-existent these months since Ivy has come home. Not only is there a lot moe to take care of each day to support Kathie and Ivy, but I have been incredibly swamped at work for the last few months...and it is only getting more demanding.

Believe me, I'm not complaining, because this is what we need to do to make it as a just means my former "free" moments at lunch time when I could answer a post or leave a quick note are all but gone...

And as for current times, Ivy continues to make incredible progress. She has been off dialysis for over two months, which is a bit of a miracle all by itself...of the three nephrologists that covered Ivy's case in the hospital, only one ever thought there was even a chance that her kidneys would recover. Dr. Lilley never gave us all that much encouragement, but he never gave up either.

When Ivy's new nephrologist found that Ivy’s kidney function had returned to 40% he felt it was time for dialysis to stop. Out of caution, we did not stop the treatments instantly, but rather gradually to ensure that Ivy’s kidney function was sufficient to support her. Ivy has been able to keep her kidneys functioning and the dialysis has stopped.

Now, we were always told that in order for her kidneys to improve, her lungs would have to improve as there HAS to be improvement there as well. Before the heat wave hit, we were taking walks every evening, trying to build a bit of endurance and exercise Ivy's legs and lungs. She got to the point where she could make it to the end of the block with only a couple of stops to recover (Ivy is using a walker to support herself and Kathie follows with her O2 tank).

Ivy has even managed to accomplish an incredible milestone she had set for herself by walking around the block...this is a 1/2 mile trip! I am so very proud of her for the effort~! It took two hours to make the trip, but this is one heck of an achievement for a young woman who was bed-ridden to two years! Ivy has proven to herself and the world that she can beat this monster and I feel that in time, she may very well recover to the point that she can function without the oxygen tank support (I pray for this constantly anyway).

Kathie has been working with the doctors to schedule the surgery to remove her dialysis catheter, her porta-cath and to repair the stoma that never healed from her trachea site. This will be the first of many surgeries to come I'm afraid. As a part of all of this, it was discovered that Ivy's right knee (which was problematic her whole hospital stay) had actually been fractured at the time of the accident and healed out of line. It is just one more surgery to add to the list, with a knee replacement the only option in her future.

Ivy has been trying to return to a more normal life as well. With the incredible heat, she and Kathie have been getting out a lot more, going anywhere air conditioned as a means to escape the heat. Kathie has been successful in weaning Ivy's O2 down to 4 liters on the nasal cannula (she no longer uses a mask at all, which we couldn't do at all when we brought her home). Just this morning, I checked her sats as she was sleeping...98 on 4 liters...great numbers.

We took our second big outing with Ivy last week when we attended street scene in San Diego as guests of AFI. Ivy did really well...we all enjoyed the show and the street scene people were very supportive of our needs. While we didn't get to spend time with the band (they left the show to travel to Los Vegas to perform at the Hard Rock the next night), their manager came out and spent time with us. What was wonderful for us all and most especially Ivy. It seems that Adam, the drummer, had arranged for the group to perform several of Ivy's favorite songs.

The big thrill was when Davey, the lead singer, announced to the crowd..."This next song goes out to our good friend Ivy, who has had a tough ride to be here with us tonight" (I'm sure that isn't an exact quote, but the message is there). This is something the band NEVER does, but they did it just for her. They all have been so supportive of Ivy through all of this and they are so genuinely concerned for her. I am so touched by this and the wonderful people that have been there to support Ivy...

Hopefully, this will offer some small glimpse as to how Ivy is doing. We all scramble 24/7 to make things happen, especially Kathie. It was so easy to keep the site going when all I could do was be at Ivy's that we spend so much of our time seeing to her needs (especially Kathie), I can't seem to find a moment to sit down and type out anything...

But for you who have been there for us all, I will ALWAYS make the time...sometimes it may be months before I can get to it, but it WILL be done.

There is so much still to be done. The reconstructive surgeries will soon be a big part of Ivy’s future. Her current pulmonoligst feels that it is important that Ivy have some of the corrective surgeries to allow her to feel better about herself. The encouragement for her by feeling a bit more complete would be just the uplifting experience that she so desperately needs.

I am very hopeful that insurance will continue to help with the bills…it is so overwhelming to even begin to understand the costs associated with the surgeries. I do know the medical bills have been in the hundreds of millions of dollars, with many more to come. There will be some point when they will no longer support her, I am very hopeful that it will be sometime far in the future.

The benevolent fund has been a great help to her… and to everyone who has given, please know that you have helped us all so very much. It is incredible to even begin to comprehend the expenses of her treatment, even with the insurance and medi-medi coverage, the bills are staggering…and there are so many more to come.

While will not ask anyone for money, please know that anything that can be donated to Ivy’s fund would be greatly appreciated. As I said on the site, I promise that every dollar will go to support her needs…Thank you all so very much for your incredible support.

With Our Best Wishes ALWAYS

Michael, Kathie, Chris and most especially Ivy