Wednesday November 26th

Well I woke up...yes Idid catch a wink or two to hear that the WBC's increased again today from yesterdays count of 3. something to 5.7 yeah WBC's The oncologists actually look at the blood smear himself today to make sure he did not see any blast cells on the slide and he did not. This is promising news and it sounds like the chemo may be doing some good. Now the discouraging news is that Zach is and has been in complete organ failure. This is the reason for dialysis, the vent etc. The hope has been that these things will begin to work on their own with time. Today the labs showed an increase in some numbers that are concerning. His lactate is now elevated and bilirubin continues to be high >50, his Blood gases still are showing a pretty serious acidosis which is not reversing even with bicarb, his other LFT's (liver function tests) are in the normal range including the INR. Zach's blood pressure continues to fluctuate up and down dependant upon movement and whatever. It is really unclear as to why this is happening. He continues to be up 23 liters of fluid. We started to remove fluid again today which put him back on vasopressers. The fluid had to stop being removed at about a liter. I really am hoping to get some of this fluid off, it can't be doing any good. When we started removing fluid last time is when Zach's ability to get off the osc. vent happened. They started trickle feeding him again today with the hopes that we can get his gut moving again. This come with some infection risk giving the bacteria the medium to thrive and the concern for stirring up his gallbladder again, so a little scary but necessary to make headway. He is down to 50% on the vent and now we hope to be able to wean the nitric oxide off slowly without losing lung recruitment. This is where all of the extra fluid plays in, in my opinion. If we could get some more fluid off I am sure it could help in so many ways.

So here is what we need. Now everyone was praying for WBC's as I asked you to do and we rallied them. So we need to pray for organ function Lungs, Kidneys, and Liver. We also need a hct and platelet counts to stabilize So pray for these huge things I know we can make this happen with the power of prayer. Let's go Team Zach.

Okay so Zach would be telling what a dork I am by saying "Team Zach", so I am laughing right now because I have probably embarrassed him.....but this is why he loves me so much and me him. (he he)

Ronda

Funny Story

Okay so Zach has been trying to be more mechanically inclined and work on his truck when things go wrong or it needs maintenance. It is time for a brake change and he is shown how to put on new brakes and was left to complete the other three sides. He proceeds on to complete the job and didn't do a bad job. He puts the wheels back on the car and is going to take it for a spin to check out the new brakes and next thing he notices is the front tire rolling away from the truck in front of him as he is driving down the road. He of course tries to keep this top secret from his dad and calls his grandpa who helps him get the situation under control. We laughed and teased him until our stomachs hurt. He may or may not of told anybody this story so as to not get teased anymore but it is out there now for others to get a good laugh. The funny thing is once his dad found out, he told a story of when he had done the exact same thing when he was younger and Zach didn't feel so bad.

I love this kid so much and he has always given us reasons to laugh. He just cracks me sometimes he has to do everything his way and most of the time it is the hard way but is has always been interesting and sometime humerus to watch him succeed. He has so much to offer this world and his mission is not yet complete. I love you Zachary Cole. Keep fighting you will come out on top.

Ronda

All of My Wonderful Children

So I wanted to share another photo of all of my children. This was taken at a Young Marine event in which my other boys including my nephew and of course Zach's siter is in the picture too.. Zach was at this event and trying to get all of the kids not to act like goofballs and take a good picture is always a task in itself. They all look so handsome and sissy is pretty cute too.

Tuesday November 25th Morning

Good Morning. I did not sleep much last night as you can see by my all night blogging. Zach did fairly well last night until this morning when x-ray came in to do his chest films. His b/p was borderline low for him and the movement caused his b/p to drop tremendously again. He does not like x-ray in the morning. We have a "new nurse" today which always brings uncertainties for me. He is so particular and any little thing and certain little things throw him off balance. It is so frustrating. He was off pressers since early last night and a simple x-ray caused his b/p to drop to 80/39. I want his Mean to stay above 60 without a doubt because his blood o2 levels are not in the 90's since his incident a couple days ago. I want to have complete success with his recovery and most importantly his brain and organ function. I will spend the day keeping a close eye on everything. As I mentioned before the nurses here are wonderful but he does not function as a nurse would anticipate, he likes to throw twists and turns at you. He is unpredictably- predictable. So When I know more on labs and what the Dr's have to say I will let you know. Have a great day everyone!

Ronda

My Family at " The Burb"

So as you can see it is my night to show appreciation and to give thanks. With Thanksgiving around the corner I have been sitting here thinking of the many things I have to be thankful for this holiday season. Although my holiday will not be quite the same this year it is certainly one in which I have so many things to be thankful for. To all of my friends from work, Thank you all for your continued blogging, phone calls and support. I can't say I have thought much about work over the last three weeks but I have certainly thought about each of you and the love, prayers, support, delicious meals and religious blogging. This blog keeps me connected to the outside world and gives me an outlet from this madness. The words are inspirational and the love is heartfelt. Thank you all and I do miss you guys. I hope to have Zach well in time and I will be back trying to make a difference.

Much love to each of you,

Ronda

Thank You Good Sam's Staff

So last but not least I want to just put it out there....the staff at Good Sams is beyond amazing. So this is kinda funny I shared with you I think in another blog post that We had decided to move Zach to University this was a couple weeks ago. My concern was Zach's liver failing and the possible need for a transplant I wanted him to be where this could happen if necessary. So I requested the transfer. The nurses worked diligently getting all of the transfer papers ready and Airlife's helicopter was dispatched. As I hear the copter landing on the helipad outside Zach's window I whispered in his ear the flight crew was here to pick him up. (Now for many of you, you probably don't know this about me I have always had the desire to be a flight nurse.) So I proceeded to tell Zach How jealous I was that he was going to get to fly before me. So as they were landing and proceeding up to the second floor Zach decides to become too unstable to leave or might I say fly before me. I was laughing about this on the inside, when I realized that maybe he realized that the care he would receive here would be more than anyone could ask for. I cannot say enough nice things about the staff at this hospital. Dr. Kinnard whom I dearly love and respect and his entire team of Doctors from every sub-specialty you can imagine has Zach's best interest at heart, we appreciate each of you. The nurses each of them take very special care of Zach and We love them all. There are a handful of nurses that routinely care for him and have come to know him very well, his likes and dislikes to Heather, Leslie, Kim, Carrie, Kathy and David thank you for the love and care you exhibit for my son day after day and night after night. I thank each of the other nurses that see him in between we appreciate and love you as well. Respiratory you guys all are wonderful and keep the airway rolling. To our regulars Marty, Eric, Kelly and Sherry and to all of the others in between thank you. Sara in EVS you are very compassionate and we thank you. You will make a great nurse someday! To Amy and Liz thank you for the support when things get tough helping when a crisis arises and all the hugs.

I cannot wait for each of you to meet my son. He is an amazing man full of life, love and kindness. You will love him as all the ones who know him do. Thank you all!

Ronda

Confession

So I have a confession...I am not very good at accepting help. I am a do it herself kinda gal, a bit stubborn and certainly a control freak. I am sure many of you have figured this out by now. One of the things I have come to realize amongst the many in this journey. Is that this is the first time in my life I really feel like I need the help of others. This is a horrible confession and it makes me sound kinda....I don't know know how to say selfish I guess. This has brought me to my knees and I feel completely out of control. I did not realize the willingness of people to give so many things, or the fact that sometimes we really need to accept that willingness to help. Many people have offered meals and I say or we are doing well and some people have just not taken me at my word and brought us meals anyway. In fact they were all right and it has allowed us not to worry about making meals for our kids each night. Tony and I especially me are struggling to eat right now, nerves and all. But this kindness does not go unnoticed and actually makes me a little nervous because my kids are used to eating my burnt dinners every night and now they will expect me to be a better cook. So to each of you who have not listened to me, we have had some nice dinners as a family here at the hospital and my kids have raved about the cooking and baking. So thank you the meals have smelled amazing and the few nights I have been able to eat a bite or two taste amazing as well. Thank you all so much.

Ronda

Zach's Replinishment Drive

So after receiving a text message from my sister-in-law this morning I am excited to tell you that three days ago she graciously help set up the blood drive for Zach and since that time in three days as of this morning 29 people had already donated in his name. This is such exciting news!! Zach is in need of so many transfusions right now this is such a great help. Even if your not his blood type it will help another person in need of this life saving donation. I heard on the radio today Bonfils is requesting donors so it makes me feel really good people who care about my son to roll up their sleeve and share a piece of themselves to not only help save his life but possible someone elses. Please know what a gift this is.... I have donated blood many times before but never really equated the extreme good my hour of time and my donation makes in someone elses life. Until you are in this situation I'm not sure we take the time to really appreciate the value of such a simple kindness, I know I didn't So Thanks to each of you who have donated and to each of you who are scheduled to donate and to each of you who wished you could but can't for some special reason. KEEP THE DONATIONS COMING I AM BETTING ON 100 DONATIONS IN HONOR OF ZACH AND I KNOW IT CAN BE DONE!!! Zach is blasting through the plasma right now and those donations are only good for 5 days I believe. So don't feel bad if they are booked out a little way your donation still matters!!!!! Thank you to all of you wonderful people. We appreciate you, This is helping to keep my son alive.


Ronda

Denver Health Family

Okay I have to just put this out there for everyone to appreciate. I am amazed every single day at the love each of you have expressed toward my son and to my family. It is all heart felt and truly more than I can even find words for. Shawn, Dean and Kelly made a trip here tonight to bring a very special gift to Zach. Once I was finally able to look it took my breath away. I have spent a fair amount of time crying tonight happy tears for the thoughtfulness and concern for Zach's assests and well being once he finally beats this thing. To each and everyone of you I send my love, my gratitute and the biggest tightest hugs you can even imagine. I cannot wait to see Zach thank you all in person. I will be crying like a big baby then too. Heather has delivered two of the biggest cards I have ever seen which are sitting in Zach's room #1 by the way...just like him. I look at them daily as they are kinda hard to miss you could almost wall paper two walls with them. He won't be able to miss them when he wakes up. Please know I will forever be greatful for your kindness and love.

Sincerely, Ronda

Monday November 24 Afternoon

Good Afternoon.....So today some of you would be happy I actually left Zachs bedside for the first time, I actually left the hospital for more than 1 hour. I had so many things pertaining to Zach I needed to take care of today and I had to leave the building to do so. Zach's nurse Leslie was at his side and so was my dad as he has been since this whole thing started. I knew Zach was in good hands and I was still a nervous wreck and couldn't get back soon enough. So with that being said he obviously was semi-stable enough for me to leave and is still the "sickest" he has been since he arrived.

I left really early this morning and was able to complete some very important tasks. I crashed and burned last night falling asleep in the chair after being awake for 30+ hours. The last couple days have been haywire and one heck of a ride. I gave up roller coasters several years ago because although they used to be my favorite thing to do they really started to make me sick. This has the same affect on me.....it's not so fun. Zach's wbc's were up to 1.4 this am....yeah for wbc's. These are good wbc's I know they are and they are going to keep producing and we will see him get better in time. I sit and look and the reality of what is happening here and I am more than amazed at this determination my son has to beat this. Not many people would still be alive battling all he is going through. There are so many unknowns and his situation is so rare it is hard to even believe it is happening. His b/p today has began to stablize again and he is no longer on the Levophed or vasopressin.This makes me happy. He is still on the bicarb. Which helps with the horrible respiratory and metabolic acidosis he has been fighting after our setback the night before last. It was his hugest setback thus far. It really makes me sad. He has such a mountain to climb back up and we will climb it together. He is so amazing and I am so proud of him. We are able to turn him on the bed again without drastic changes in his B/P. His oxygen sat is 97% but he is still on nitric oxide. So they will leave those settings alone for tonight. He is still trying to recover from the other night. Leslie just told me his nightly labs showed wbc's were up to 1.7, platelets were still low and he is being transfused again with platelets tonight, His hct was close enough to normal he would not get a blood transfusion just yet. So We are settling in for another stable night with small steps forward.

Ronda

BRUCE the dog

So as I am sitting here trying to exercise my new found patience, I have decided to let you guys see my handsome son. Many of you know and love him, some of you have yet to meet this kind gentle soul I call my son. So a funny story...Zach calls me at work one day and asks me if on the coming up Friday if I could go to the airport and pick somebody up. I said who is coming into town and he proceeds to tell me his new puppy whom he bought out of state and was having him flown into DIA. I was like are you kidding me you couldn't find a puppy in Colorado? He told me not one this cute mom....he is special. Needless to say I was irritated because we had discussed previously with his work schedule how hard it would be to have a puppy but I reluctantly agreed to go pick him up. So I get to the airport "dog pick up" and they bring out this 8 week old weimeriener puppy and I took one look and fell in love with him. So it took Zach several days to name him and we gave him several suggestions and he came up with the name BRUCE. We gave him so much Jazz about how Bruce was not a "dogs name." He proceeded to tell us that he researched the name and it was a strong name and it was his dogs name we had just better get used to it. So we did and this is BRUCE the dog. This dog his so in love with Zach and is missing him so much. Isn't Bruce the Dog cute?

Ronda

Zach and his dog BRUCE

Sunday November 23rd Morining

Good Morning! It is our 21st day here at Good Sams. It hardly seems like it. I feel like time is just frozen and maybe I am having a bad dream that I will just wake up from and everything will just be normal again. I wish this were the case.

Well about midnight last night Zach's oxygen saturation started to drop and hung around 89% for most of the rest of the night. While his bed was shifting him back and forth his Vent tube caught on the bed and dislodged causing him to desat, even further. It is so difficult for Zach to recruit oxygen right now when these things happen. It caused him to go into a respiratory acidosis. His B/P was really low last night and we are still having difficulty getting it stabilized. He is on Vasopressin and A max dose of Levophed. He is getting two units of blood right now and the blood bank here is out of platelets for him so Bonfils is bring some over. His platelet count this morning was only 4. He is just unable to keep his numbers in a safe zone right now and so transfusions are so necessary. His bilirubin climbed up over 50 again we expected this with the Chemo he received on Friday. Good news is WBC remains 0.9 with neutrophils noticed on last labs. So it looks like another touch and go day. I am really tired today I didn't sleep much with all of the hoopla last night. I wish like crazy we could stop taking these steps back, it is so frustrating. I hope you all have a nice day!! Say lots of prayers for a better day and I will update you later today.

Ronda

Saturday November 22nd Night

Well we had another stable day and I am so excited for a little bit more news. So we have had <0.4 WBC's since admission and I believe it was yesterday lab saw 1 WBC and this morning we got a count of 0.8 and tonight's lab draw brought to us a count 0.9 This is the news I have been waiting for with all my might. He needs those WBC's to fight with all of their might. I am so happy for Zach I just want to pick him up and squeeze him. He is weaning off his medications again and the vent settings. It is an inchworm effect and hard for people like me who are inpatient waiters. I have increased my patience level tremendously on this journey. They say good things come to those who wait...I am banking on this and I am exercising my new found patience.

Each and everyone of you hold a very special place in my heart and will forever. It is the tremendous support and prayers from all of you that keeps our family alive to fight this battle with Zachary. Thank you all so very much.

To my Son, sleep tight know how much I love you with every inch of my soul. I love you more every minute I watch you battle this beast. You are an amazing fighter I am sure many other would have given up the fight. I am by your side every step of the way draw your strength from me and all of your wonderful family and friends when you feel like you can't give anymore. I love you!!!

Ronda

Saturday November 22nd Afternoon

Okay so we had a stable night! Zach is holding steady, I am so proud of his fight to beat this. He is amazingly strong. He would be so overwhelmed to know how many people are pulling for him and the outpouring of love and compassion of so many terrific friends and family and friends he will someday meet. Thank you to everyone I can't say it enough how much it means to our family every little stitch of love and kindness being displayed in more ways than I could have imagined. It truly helps to make it through some really hard days to know that so many people are keeping us afloat.

So are you ready for today’s great news.....Zach's WBC count went from <0.4 to a whopping 0.8 today. Way to cheer on the WBC's. Now let’s hope and pray we don't lose any ground there as the Chemo works its magic. Zach's INR was down again today down a little bit everyday. His B/P has been stable and he is nearly of the levophed, another little baby step. He has had some metabolic acidosis which they are correcting with bicarb. and adjusting his cont. renal therapy. But has been really stable with his respiratory status and he is weaning off of the Nitric oxide slow but sure. He is getting a bath right now. I am sure he is completely thrilled # 1 that he is getting a bath because he is a clean freak and # 2 thrilled even further that I am telling the whole world this. He is definitely losing weight his prominate cheek bones are really prominate now. I wish we could start at least trickle feeding him again. He needs that nutrition to aide in his recovery. Still on anti-fungal, anti-viral and vanco (antibiotic). We are slowly chugging back up the hill.

Way to go my son, my friend I love you with all of my heart and I can wait to talk to you again. I am so proud of you!!!!

Ronda

Friday November 21st Late Night

Time has gotten away from me today. I am just now able to post updates. First off I want to thank All of the people who hit the Bonfils today to donate, keep the donations coming It is absolutely amazing the support and love that our family has received. My heart is filled with so much joy to know how many people love my son. I personally think he is very special. He has such a big heart and a giving soul. I dearly love him with all of my heart. I have sat in this room hour after hour for the last three weeks trying to understand how we ended up here. It is so unbelievable I can't even begin to understand it. I have learned so much over the last three weeks...most important I have learned the value of my children and how very precious every minute is with them. Time just flashes by in a blink of an eye and they are 23 years old, where did that time go. Zach and I shared a lunch together for my birthday the week before he got sick. We sat and talked for a couple hours as we usually do, it is a moment I hold very dear in my heart right now. We talked about how proud I am of his accomplishments and lots of other things. Zach has accomplished so much for a 23 year old. His biggest accomplishment was he just bought a house. His dad and I are so proud of that. He was a few days shy of actually moving in before he got sick. So when he gets out of this home away from home we will have a big house warming/celebration of life party as we move him in and everyone is invited.

Okay so now you want to know how his day went and it was okay. No big milestones today but no big setbacks either. We had another critically stable day. He is still on the Osc. Vent with nitric oxide which he is weaning off of. His B/P had remained stable on two pressers to aide him with stability. LFT's have remained fairly stable today With INR coming down slightly today. Hct remained stable as well but platelet count continues to stay low and he continues to get transfused. The big shaker for today is he had another round of Chemo, receiving only one of they treatments he received last week. Once again incredibly scary as it could help him or possibly take his life because of his critical condition. We are battling two demons here sepsis with no immune system and Leukemia/Lymphoma a rare and rapid form. We have a 50/50 chance either way. I have had to make some of the toughest decisions I know I have ever had to make in my life. So again lots of prayers now for a stable week as the chemo does its job. We are hoping for more WBC's so cheer them on they need to get pumped up and produce away. That one little WBC need some good friends. So for tonight my dear extended family Zachary is resting well and is stable for the moment. We don't intend to rock the boat tonight.

Good Night to All

Ronda

OOPs

The website is www.bonfils.org Thanks Bethany I miss you I hope your trip was safe and fun.

Zach is doing as well as can be expected tonight. Just took his Ipod out of his ears and settling him in for the night. I Thought he might want to get motivated to his music. Music is so motivating...I think anyway.Vitals look good tonight and we are hunkering in for another peaceful night. One minute at a time. I dearly love each and everyone of you for the support. The support has came to us in so many ways. Everyone of you have played a role in keeping our family, Zach in particular going and it means so much to us.

The plan for tomorrow is to give Zach another small dose of Chemo. Still a bit scary given his condition but despite the sepsis he really has a bigger monster to battle that being the leukemia and we would like to beat it as well. It is such a balancing act and many of these things come with risks but may have benefits as well. We will continue to hope and pray that the decisions we make will bring him out on the top somewhere along the line. So pray tomorrow and for the next few days that the Chemo will be helpful and not harmful to him. I will talk to you all in the morning.

Ronda

Replinishment Drive Bonfils #6947

Well we finally have the details for any of you that are interested in Donating Blood/Plasma. We know that so many people have expressed their love and concern for Zachary and want to help in anyway they can. So here is the way to help. A replenishment drive has been set up for Zach. As i mentioned before Zach is Blood type A- and can receive A-or O- blood. We are asking that everyone regardless of blood type please donate in Zach's honor. Zach will eventually receive units of blood and everyone donation will help replenish our nations supply.

Here are the details: Please visit www.bonfils.com there are 8 locations to donate. In addition review the 9 pre-screening questions...things that might eliminate you from being a donor at this time. Then head to your nearest Bonfils and donate away. When you go in mention Group # 6947 Or Zach Ficco Replenishment Drive. This group # 6947 will take effect on 11/21. Please support Zach and our blood bank supplies even if you are not his blood type.

We are working on having the Local news stations broadcast this drive on Zachary's behalf. So you may see his name and the effort on the news.

So put on your Rally Caps we are going to make baby-steps back up the mountain!!!

Ronda

Thursday November 20th Afternoon

So Zach has 1 WBC!!!!!! I don" think I have ever been so excited for something so minute yet so astronomically huge. So last night things were very bleak and the one thing I made a deal with Dr. Kinnard was complete honesty despite how horrible it might be. He took Tony and I aside last night and explained how unsure he was that he would make it through the night. I listened to the fear in his words and grew strength from that. I went to talk with Zach after the news to reassure him he is in the driver’s seat and I am just his co-pilot but that he has a whole bus load of passengers that are keeping the bus going even when we have to pick it up and carry it for a stretch. So we may be bumping along with a flat right now, this uphill journey is not over. He is amazingly strong and is certainly being challenged by a beastly challenge right now. One I believe he can overcome given time. The whole thing has taught me a patience I have never had. I expect change immediately and have really struggled with the ups and downs of this journey. Our situation is a sticky one right now and the strength within continues to beat the beast down.

Medically speaking, Zach is on the osc. vent. with nitric oxide assisting his lung function and maintaining 95% on and fio2 of 55%. His platelet count today is 10. His hct and b/p dropped considerably yesterday which called for a rapid infusion of FFP, PRBC and PLTs. He has not been transfused yet this am, but will be soon. His INR came down to 1.6 could be due to Vi.t K he has been getting IV. LFT's still look good today no changes there. His b/p remains stable right now but he is on two pressers aiding with this stability. He has been on and off those several occasions mainly vasopressin but I am confident he will wean off of these as well. His color looks better with his bili has really remained the same in the 40's. We had him off of paralytic for a couple days while he was on the other vent. He was moving his head back and forth and had some muscle twitching in his biceps; he was showing us his big guns. So that is really it for right now. Keep the prayers coming as I know you will. I will put an update later today right now we are holding as stable as can be.

My sister-in-law is arranging a blood drive through Bonfils and I will post on how to do that as soon as I know more. You can donate in Zach’s name whether you are his blood type or not and he will get the types that match all other donations will be made in his name for others who may need your type.

Ronda

Give the Gift of Life

So I was asked tonight by one of the nurses for donations of blood and plasma. Zachary has used alot for his transfusions. I know there are going to be a huge number of people willing to do this for him. I was hoping to have this set up before now. I have been asking everyday how to do this. I am still not even sure. She just gave me a paper wtih a phone # 303-689-4410. Zachary is blood type A-. He can receive A- or O-. The tricky thing is people with this blood type will also be able to donate when he is eligible for a bone marrow transplant if they choose which will eliminate them for that opportunity when it arises. I am not sure why and it has not been made very clear. So anyone any blood type who wants to give the gift of life in Zacharys name can donate at Good Sams Lab and all you need to do is call the above number to set up a time......I think. I will try again to get some more information in the morning. I will call Bonfils for more information and post as soon as i can.

He is holding strong tonight. We have pulled all of the tools out of the tool box tonight and he is not giving up. Keep the prayers and love from everyone you know coming it is what he needs more than anything right now.

Ronda

Wednesday November 19th Everning

Sorry to all for no updated blog. The last 24 hrs have been pure hell. Zach has really struggled in more ways than one. He is back on ths Osc. Vent. And is on more meds than I can count on two hands. Dialysis is still going and he is clinging to life. Please know that he is a fighter and that I have told him how many people are rooting him on. He needs all of the prayers and love right now we can all muster. Have everyone you know pray. He is the most amazing person with the biggest heart and I can't stand the thought of losing him. He is my best friend and I am incredibly proud to call him my son!

Tuesday November 18th Morning

Good Morning to Everyone. Zach had a relatively peaceful night. He remains stable on the Regular vent. With oxygen settings at 50% and 8 of PEEP he is maintaining his oxygen at 97%. Which is really good. His B/P remained stable throughout the night but at shift cahnge this am his B/P decided to drop. So he was started on Vasopressin about 15 minutes ago to bring his pressure back up he has done very well without it for a few days. He has been on and off of it several times throughout this process, So I am not too concerned about this. I think they intend to start pulling more fluid off today, so vasopressin will help with that as far as b/p goes. After a low b/p yesterday we stopped removing fluid and actually gave a fluid bolus which really took us back to ground zero with about 18L of extra fluid. Any medication changes for Zach result in big changes for him vitals wise. He has difficulty with any changes but especially medication changes. Continuity of care is so critical in his fragile state, to get to know what he likes and doesnt seems to keep him more stable. He weighs 85.9 kg today he would be so happy. Lung xray show a little fluid but otherwise okay.

So big concerns for me right now are his INR which was up again today and his inability to produce his own cells RBC, WBC and platelets. So these are the things we really need to start praying to have turn around.

Things to think about on Zach's behalf. I am not sure how this works and am working with his Dr's on that. When I have more information I will let you know. They have asked that family wait to donate blood /platlets etc in case we need to donate for bone marrow transplant.

So once again my deepest thanks to each of you for every , every ounce of encouragemnet and support. It means more than I will ever be able to express.

Ronda

Monday November 17 (Evening)

So Zach made the transition to the regular vent and did so beautifully. Now the hope is to come off of Nimbex which is the paralytic. It will be nice to see him moving and blinking his beautiful blue eyes. We had a few bumps in the road today I completely believe it is a sedation issue not really related to the vent switch. Zach has been very sensitive to any changes but especially to medication changes. Today after switching from the vent we put him back on the Ativan and increased his Fentanyl, needless to say Zach dropped his blood pressure. We were able to get it back up by decreasing his meds. again and giving him a fluid bolus. He stabilized and pressure was back to normal. His meds. were then increased to the same level once again with the exact same effect. So another fluid bolus was given and med were decreased again. We are finally stable again but lost some ground with all of the fluid we removed over the last 36 hours, very disappointing to me. I really feel 18L of fluid is having some impact on him, for now we aren't removing anymore fluid on dialysis to keep him stable. It is such a balancing act and after sitting in this room for a little over two weeks and watching every change it is easy to see what works and what doesn't. Big changes dont work. He is still making progress and I am so proud of him. I was suctioning his mouth a short time ago and he actually pulled his head from me not once but twice. I was so excited to see the effort on his behalf to pull away. He is amazingly strong and continues to prove his strength over and over again. So for now his vital signs are stable and he is holding strong on the vent. We are hoping for a peaceful night without any big changes or bumps in the road. It was a long day for him he worked hard today. We are making little bits of progress its like two steps forward and three steps back. It truly is enough to drive you crazy.

Reading these blogs keeps all of going everyday! I cant wait to hear what Zach has to say about all of the blogs I have read to him and what an inspiration they have been to him. Thank you so much to each of you. You all are uplifting.

Ronda

Nov 17 2008: Morning

Good News....Doctor came in this am with lab results....LFT's are down to nml range, AST 33, ALT 47, indicating liver inflamation is down again today. They had to bag him last night while they preformed a bath and his 02 stayed up during it which is great. His vent is at 45% 02 and MAP is 24-25. Chest x-ray is a tiny bit better today. INR wasn't ran this am for some reason so another was ordered for later today. A little over a liter of fluid was pulled off yesterday with dialysis. WBC and plateltes still low and we continue to transfuse wit Hbg of 8.9 and RBC 2.94. They hope today around 11am that they will move Zach to a regular vent. This will allow him to come of the paralytics which is wonderful news because the longer he is on it the higher the side effects are. His color looks mildly better today and I imagine it is from the decrease in bili. I am happy for baby steps. I know my son is very strong after all he is my son...hehe. Although we don't know what the future holds we do know that he is holding incrediably strong and it is due to the fight within and the uplift he gets from each of you that give him prayers, love, and support during this crazy time. Our family is incredabliy thankful to eveyone for everything you have done and continue to do.

Sunday November 16 Morning

I have finally obtained access with my own computer to this site. My dear friend has been updating the site with my text messages sent to her, in between taking care of herself and her newborn beautiful little girl. Thank you Meggan for all of your help.

As far as Zach goes we had a smooth sailing day.They started to remove 50cc of extra fluid an hour starting last night. He is up 18L of fluid that accumulated prior to dialysis starting and we are now slowly starting to remove it. It will take approximately 15 days to remove all that extra fluid at that rate. he is almost at the setting required to come of the oscillating vent, so maybe tomorrow. The discussion may be putting in a trach. and switching to regular vent. Hct is staying up and INR went up to 1.66 today but LFT's continue to come down slowly, wbc remain steady at <.4 no increase or decrease. We are stable right now waiting the Storm out and for a turn in the road. He is fighting it with all his heart.

Ronda

Nov 15 2008: Noon

Zach had another peaceful night and nothing to crazy happened. HCT and platelets are up. Creatinine is okay but is being controlled with dialysis because he has no urine output. Liver function increased in AST and ALT which is okay as it shows liver is still able to do so. INR was down today from 1.66 to 1.37 which is good news and means the liver is still synthizing. In the whole picture the liver is my concern and it needs to keep showing improvment. We can provide support to all of the other organs that are in trouble right now execpt the liver. The chemo gave it a big ounch two days ago and we expected the numbers to move more around a little. Now we hope the starting trending in the other direction. Zach otherwise is doing very well and he weights about 200lbs with all the thrid spacing. They don't intent to remove much of the extra fluid at this point with dialysis because he is to fragile. So he will keep all the extra fluid for now. They are only going to remove the same amt that he gets daily. HR 72, BP 100/47 on no pressers, 02 98% with osc vent at map of 29 and fi02 at 65%. Lung x-rays today show decreased lung expansion but is due to decreasing map on vent which they are trying to wean him off. I think extra fluid removal will help his lungs also. Otherwise lungs are clearing and ARDS in left lung is still worse than right. That's it for now.

Mother's Blog

I want all to know something....23 years ago I was very blessed to have Zachary come into my life. We grew up together. His dad and I have stood by him through thick and thin. This is definitely the thick right now. I couldn't be prouder to call myself his mom. He is an amazing man and my little boy. He has so much going for him and has worked his tail off for it. He just bought a house which he is extremely proud of. He hasn't even moved into it yet. He is an amazing soul full of giving, love, gentleness, and much much more. He is my best friend and we talk about everything. My heart is breaking right now not to be able to talk him though this. Have him tell me he loves me and me him. Just know I am his biggest fan and I couldn't be prouder of him even if I tried. He is amazing!!!

Nov 14 2008: Morning

So we got the labs back from this am and unfortunately the numbers are worse. We expected this after his body took a incredible chemo punch. His doctor whom I love by the way, equates his situation to columbus boarding a ship and sailing west hoping to run into the shore line at some unknown point. When will that be no one knows and it is going to take time. Platelets and WBC were down even with transfusions. INR up to 1.5 So now it is a guessing game at this point. Time will only tell. We are also weaning Zach off the paralytic but no movement yet may be normal.

Zach you are incrediblly important in my life and I love him with all my heart.

Nov 14 2008: Early Morning

We fianlly had a peaceful night for once and for that I am extremely thankful. Zach blood pressure held in the 140/60 with no pressers. Zach just finished another unit of platelets and will have labs drawn in about a hour to check his CBC. INR reamins stable at 1.2 and he looks really good today. Zach is also weaning himself off the osciltating vent. Lung x-rays yesterday look markedly better with costal margins present especially on his right lung. The left is still a little bit hazy but improved. No urine output last night so they removed his foley to prevent infection and now are straight cathing after bladder scans. Still no nutrition with a paralytic bowel. That will hopefully change soon when they wean him back to a regular vent. So pray for a great day and good news. Don't forget to sign your comeents so I can see who wrote the supportive message.

Nov 13 2008: Evening

Zach's chemo is in along with 2 units of blood and 1 unit of platelets. WBC was down this am to 0.6 and tonight is 0.9. BABY STEPS! HCT up tonight as well. Vent settings have decreased throughout the day, blood pressure tonight was 138/67, HR 88 and oxygen sats 100% on vent with 70% oxygen. However Zach is still puffed like a marshmallow. My baby looks good tonight so I am going to try and sleep a wink as I haven't gotten much. And his dad is going to take watch for the night. Zach needs 24 hr encouragement to beat this thing and we will beat it down if it kills me. He has his whole life ahead of him and a great life at that!!!

Nov 13 2008: Noon

Here it goes he is getting chemo. The doctors here have been talking with other wolrd renouned experts and have suggested adding one quater of a dose of a second medication for greater good despite the risks involved. This is the real deal breaker and we all hope the infusions go well and that his blood work improves. He is still getting dialysis and is getting 2 more unit of blood and platlets at the same time. I feel like my heart is going to pound out of my chest. Please let this work....PLEASE!

Nov 13 2008: Early Morning

The night has been rough...his pressures and heart rate have elevated because we tried to pull a very small amt of extra fluid off by dialysis and Zach has proven time and time again that he doesn't like changes especially big ones. Nights are always harder it seems. He is really third spacing or fluffing up with extra water. He is up about 18 liters of fluids now. On a lighter side he has always wanted to look bigger and now he looks huge. Not sure what we are going to do since he seems to dislike us removing fluid. Zach labs were just sent at 4am and we will wait to see the changes. It has truly been a roller coaster ride. And our family is trying to hold on.

Nov 12 2008

After yesterday diagnosis we are pushing forward to treatment. Right now Zach can have no visitors except immediate family due to the fact that they are taking his immune system down to zero so they can start chemotherapy. We have a 50/50 chance and we are going to give it everything he can tolerate to beat this nasty cancer. Zach has up and downs and this is very typical of ICU. He has his age going for him and healthy heart. The vent is also helping his lungs hugely. Zach will also not be going to University Hospital any more one because he is unstable and two because he cannot receive a liver transplant because of his diagnosis. But the doctors from University are involved in his care here at Good Samaritan because of the rare form of Lymphoma/Leukemia. Zach is on continuous dialysis now and it is holding in labs stable for now. Chemo will start in the morning and will be very dangerous because of his many organs that are now compromised. We will let you know more later. Thank you for all you guys have done and all your support it has been amazing.

Biopsy Results: Lymphoma/Leukemia

Well a few hours ago Dr. Kinnard gave us some answers based on the bone biopsy. Zach has a rare form of T-cell Lymphoma vs. Leukemia exacerbated by the Epstin-Barr Virus. This is such a rare and odd presentation. We have chosen to aggressively treat him with chemotherapy because the options are very limited and considerably dangerous. Also he had dialysis today which ended around 2000 and his numbers on the monitor are looking good. I have put Zach in the drivers seat and his co-pilot is Heavenly Father and the rest of us are along for the ride. He likes bumpy roads so hang on. We will need all the love and encouragement we can get. More prayers not only for his stability through this but also for a miracle to knock out this nasty fast moving cancer. He is strong and holding on. So we must hang on and be strong for him.

Ronda

Nov 11 2008: Afternoon

New labs have gotten worse, creatine is up tremendously and they have put two more IV's in to prepare for dialysis. Zach also keeps going into resp acidosis which they are trying to correct with vent settings. Today he received more platelets and will get another red blood cell transfusion. Also the initial test results are back on the bone biopsy which show abnormal cells but that are not quite indicative of Leukemia. Medically they cannot figure anything out. All this information makes things crazy and I don't understanding any of this. We really need prayers from everyone we know. This is truly in Heavenly Fathers hands. Thank you!

Nov 11 2008: Morning

Zach had a more stable night. We are truly greatful for wonderful nurses, doctors, and RT who have taken amazing care of Zach. Please pray for a good stable day and I will post more on his status later.

Nov 11 2008: Very Early Morning

Zach's vent was changed after his failed transport. His labs have shown no improvement and his abd is distended because of enlarge liver and spleen. Also decreased urine output. Blood pressure are holding steady with two pressers. After red blood cell and platlet transfusion have helped his HCT.

Nov 10 2008: Evening

Zach tolerated his bone tap well but is having a lot of problems with movement. Also this evening he was almost transferred by helicopter to University Hospital in Aurora but due to complications became unstable before transport. Please pray for a stable night.

Bone Tap

Zach is getting his bone biopsy now and should be back in his room shortly!

Nov 10 2008 Monday: Noon

Last night Zach had a rough night his lungs are struggling and his liver (bilirubin)blood work has almost doubled over the last 36hrs. After his transfusion of red blood cells yesterday his HCT is only 21 barley up from 20 yesterday. The Oncologist has not arrived yet to preform the bone tap because all other test have come back negative including all cultures. The oncologist thinks Zach may have Leukemia and we will not have the results from today's test (whenever they do it) for another 1-2 days. If it Leukemia and his liver continues to fail then he will not be eligible for a transplant.

Please keep us in your prayers and as for now no visitors except family at this time Zach is very sedated and gets very agitated with little things....for example: the bed moving, people talking, etc. Thank you EVERYONE! Check back for updates and if you are leaving comments leave your name too so we know who it's from.

Nov 9 2008 Sunday

Last night Zach's high fevers returned. Also his lung secretions are increasing which means that they have changed his vent to increase positive pressure which keeps the alveolar open. Today they are working with a combination of drugs to help sedate him properly without dropping his blood pressure. Also Zach has been transferred to a air pressure bed that rotates him every 30 min from side to side to help prevent pressure sores. He is extremely agitated by this movement and is working diligently to remove his breathing tube at times. They have also started nasogastric tube feedings. He is stable now but any changes to meds or vent just send him spiraling downward. They are trying to wean him off the propofol because of the toxic effects on the liver. It is so hard on him and everyone else too. They have a newer medication I don't know the name but it is supposed to help keep him in a deep sleep but that he may wake on arousal. So that is about it for now...his night nurse is fabulous and has him tucked in for the rest of tonight.

Ronda

Nov 8 2008 Saturday

This evening we found out that what they had initially thought by preliminary liver biopsy results that this might be Epstin-barr Virus has now been ruled out completely with serology. Zach will have a bone tap on Monday to explore other possible causes. In particular they are looking for a rare form of Malignancy Hepatosplenic Beta Gamma T-cell Carcinoma. Never heard of it....need to do some research. Zach's labs continue to elevate/decrease dependant on which lab but not markedly. The doctors have also discussed a transfusion of red blood cells if lab work does not improve.

For us it has been an emotional ride. So much info. So many wonderful people showing love and concern. I wanted to say thank you to each and everyone of you for your acts of kindness and support. For those of you that saw me today saw me in a very rare and raw state. Thank you all for your understanding. I have had extreme emotional difficulty over this situation. Your support gives our whole family strength. Zach has a great family at DH and it is really shown. He loves his job and all the great people he works with. I feel like I know most of you personally because I have heard so much about you....thanks to EVERYONE. Zach really needs some time to rest and gain strength. I am cutting visitation right now to family only. Thank you all!

Love Ronda (Zach's mom)

Nov 7 2008 Friday

Zach had a peaceful night...huge blessing. Liver blood work is elevated more today. HCT and platelets decreased. Other organs are starting to swell (pancreas and spleen). Preliminary liver biopsy results are back from this morning test and they are pretty sure it is Epstin-Barr Virus which will slowly get better on it's own. Although they are not 100% they are still looking for other answers and will continue to do further testing. The doctors have discussed worst case scenario based on his trend in lad work today....Liver transplant was one of the things they discussed. I will digest this and get you more updates as they come.

Ronda

Nov 6 2008 Thursday

Last night after more high fevers, increased heart and resp rate they placed Zach on a Bipap machine to help him breath. After a few hours he started to get worse and needed intubation early this morning. Zach was very worried about the need for a breathing tube and gave me a very detailed list of his eye care, mouth care, sheets straight, etc. while puffing away with a resp rate of 50. After I wrote them down he finally he agreed to the procedure and after a very difficult intubation he was tubed. At this point we have no answers and I am extremely concerned for my son. Many doctors and specialist have been in and out with their interpretation which equals a bunch of test...an umbrella effect if you will to catch something...anything. Will let you know more as more test come back.

Zach Urgent Care Visit: Nov 2 2008 Sunday

Zach wasn't feel well for about a week or so with flu like symptoms and a fever. Sunday he started feeling worse and went to the urgent care to be seen. After a quick look over by the MD he was sent to the ER at Good Samaritan for futher testing. After blood work and other tests results came back they decided to admit Zach to the ICU for futher observation and testing.