All Sorts of Stuff...

Well, today was a decent day considering everything. Ezra went on CVVH on 9/6/08 and has been tolerating it fairly well. His blood pressure has been good and so has his heart rate. Two things that they were concerned about. And still are. So far the Dialysis is doing what we wanted it to. Ezra is very slowly starting to lose some of the fluid that is in his tissues. So we are hopeful...still worried but hopeful. Got to keep the balance. For those of you who don't know the CVVH is pretty much acting as his kidneys right now. So for now Ezra is "stable"...very very very sick but stable. I was so happy today because Ezra was able to open his eyes for the first time in a long long time. What beautiful eyes he has.
Tilly and Tucker are doing well, especially since Beau has been staying home with them. The "white" Poppa is here right now and the kids love it. Tilly is always telling Poppa how much she loves him. I am so happy that Ron is here right now, we just love him so much. So in the evenings when the kids are in bed Beau and I come up together to see Ezra. I am here all day during the day and then in the evening Beau and I will come up together.



So that is pretty much the latest with all that is going on in the Ross family. We still continue to fast and pray for Ezra that the Lord will heal him. And pray that he will bring some comfort to Ron and the family in their time of grief. How thankful we are for our faith and knowledge of the gospel.

CVVH and ECMO...

Ezra’s Update 9/6/08
I don’t even know where to start anymore. I’m just going to write what exactly my understanding is of what is going on. So if I lose you along the way I am really sorry.
Last I wrote Ezra had started to pee again. He was doing really really well. He started to lose some of the fluid and we were really hopeful. Well, then Ezra’s PD (Peritoneum Dialysis) Catheter started to leak so they had to stop the Dialysis. They also wanted to see if Ezra would pee and just keep up with it. Well, he was doing okay with urine output for a tiny bit but it of course started to trail off AGAIN. His blood pressure has been low so they have been trying to give him medicine to get the blood pressure up so that he would pee. Well, since giving him these medicines like Dopamine and for a short time an Epi drip his heart started to work hard which made the walls of it enlarged. Enlarged walls of the heart are not good in case you don’t know. It is a very bad thing if it starts to get too enlarged. The Cardiologists did an Echo and decided that he needed to be taken off of the high doses of medicine like Dopamine. So they have been able to take him from 30 mcg/kg/min to 8 mcg/kg/min.
We are still having a hard time getting his blood pressure to stay up and his heart rate low (so that his heart isn’t overworked). Ezra is still not urinating like he should. He has about 1 cc of urine an hour. He is EXTREMELY puffy. His skin is starting to get really shiny. I asked the nurse why and she told me that it was because his skin is just being stretched so much and it will start to crack and ooze a bit because he is so edematous.
Now, because Ezra is not urinating like he should and the P.D is not working like it should we are most likely going to try the CVVH. I am sorry I don’t know what that means. It is the where the blood is constantly being filtered and then put back into the body. They are trying to get the Urea and fluid out. If the CVVH does not work then we are looking at ECMO. Beau and I DO NOT want it to come to this but if that is Ezra’s last hope than we will do it. We feel like Ezra deserves as many chances as he can get. Below I have copied a description of what ECMO is for everyone to know what it is and what it entails. Beau and I pray that the CVVH does the trick. If Ezra went on ECMO it would be an even scarier time for us. Ezra already has the Coagulapothy problem and has had bleeds in the past. They would monitor Ezra’s brain to watch for Hemorrhaging but it is still so extremely scary and risky.


EXTRACORPOREAL MEMBRANE OXYGENATION



In intensive care medicine, extracorporeal membrane oxygenation (ECMO) is an extracorporeal technique of providing both cardiac and respiratory support oxygen to patients whose heart and lungs are so severely diseased that they can no longer serve their function.
An ECMO machine is similar to a heart-lung machine. To initiate ECMO, cannulae are placed in large blood vessels to provide access to the patient's blood. Anticoagulant drugs (usually heparin) are given to prevent blood clotting. The ECMO machine continuously pumps blood from the patient through a 'membrane oxygenator' that imitates the gas exchange process of the lungs, i.e. it removes carbon dioxide and adds oxygen. Oxygenated blood is then returned to the patient.
There are several forms of ECMO, the two most common of which are veno-arterial (VA) and veno-venous (VV). In both modalities, blood drained from the venous system is oxygenated outside of the body. In VA ECMO, this blood is returned to the arterial system and in VV ECMO the blood is returned to the venous system. In VV ECMO, no cardiac support is provided.
VV ECMO can provide sufficient oxygenation for several weeks, allowing diseased lungs to heal while the potential additional injury of aggressive mechanical ventilation is avoided. It may therefore be life-saving for some patients. However, due to the high technical demands, cost, and risk of complications (such as bleeding under anticoagulant medication), ECMO is usually only considered as a last resort therapy.
ECMO is most commonly used in NICUs (Neonatal Intensive Care Units), for newborns in pulmonary distress. It is around 75% effective in saving the newborn's life. Newborns can't be placed on ECMO if they are under 4 and a half pounds, thus ruling out the device for most premature newborns. Newborn infants are occasionally placed on ECMO due to the lack of a fully functioning respiratory system or other birth defect, but the survival rates drop to roughly 33%. The time limit for a newborn is usually around 21 day max. Dr. Thomas Krummel, Chairman of General Surgery at Stanford University, held the record for the longest survivor on ECMO at 62 days. This record was in turn broken recently on January 30th, 2008, when a patient at NTU hospital, Taiwan survived a drowning accident after 117 days of ECMO application.[1]
'ECMO can have dangerous side effects. The large catheters inserted in the baby's neck can provide a fertile field for infection, resulting in fatal sepsis.' (Excerpted from How Doctors Think by Jerome Groopman, M.D.
In Adults ECMO survival rates are around 60%. In Adult VV ECMO there are reports of patients being supported for over ten weeks. ECMO has yet to have proven survival benefit in adults with ARDS.
Management of the ECMO circuit is done by a team of ECMO specialists that includes ICU physicians, perfusionists, respiratory therapists and registered nurses that have received training in this specialty.
In VA ECMO, patients whose cardiac function doesn't recover sufficiently to be weaned from ECMO may be bridged to a Ventricular assist device (VAD) or Transplant.
**********A little update***********
Ezra right now is on CVVH and the surgery went smoothly and so far so good. Meaning that no big complications yet and hopefully never. So once again this is taking his blood out and filtering out all the toxins and fluid and putting it back in. We will see how this goes. Beau and I pray that this works for our little man. We will keep updating.

A mind of his own...

Well, here is the latest update on Ezra. Ezra has been on Peritoneal Dialysis to try and assist his kidneys, get the fluid off and get the toxins out of his body. Ezra was doing well on the Dialysis until it started leaking around the catheter going into his Peritoneum. When that happened they had to reduce the amount of Dialysis fluid that they were putting into his Peritoneum. When they reduced the fluid that they were putting in his B.U.N started to rise. The BUN rising meant that the toxins in his blood were not being removed, so the Dialysis was not doing what they had hoped. With the rising B.U.N that could make it even harder for his blood to clot and make it harder for him to fight off all the infections that he has.
Dr. Colaizy (who is the doctor on staff right now) talked to us about the situation and told us that they felt it was very important that we start Ezra on the Hemo Filtration Dialysis. They will put a catheter into his body that will take the blood out filter it and put it back in. I know that isn’t a very good description but that is the best I can do. Two of the worries that come with this are of course infection, and trying to maintain a good blood pressure. There are many other worries or risks but I’m not going to list those right now. The surgery will take place tomorrow, so we will keep you all updated on how it goes.
8/26/08


Today was a fabulous day! Beau and I got to the hospital expecting that Ezra would be going into surgery today. Well, Ezra did not agree with that. Around midnight last night Ezra started peeing! And he is STILL peeing! What does this mean? It means that his B.U.N has gone down a tiny bit and his Creatnine has gone down as well. This is FABULOUS news. So the doctors wanted to give him some more time before doing the Hemo Filtration. The Doctors have a good plan set up and so we will just follow that for however long we need to. It’s funny because they have all said that Ezra has a mind of his own. He will do things when he is ready to…they can’t push him. That’s our boy…STRONG! Dr. Colaizy came into the room today and one of the first things she said was “Ezra had a lot of people praying for him last night.” VERY TRUE and we are thankful to all of you for that. Ezra is not out of the woods of course but today is a day for celebration. I’ve come to notice that you really need to enjoy these good days because when the bad ones come you need to be able to remember and hold on to the good ones. Yes, I am just now figuring that out. Granted Beau and I are both still guarded because this is so UP and DOWN…but still we are extremely happy that for today Ezra is peeing.
8/27/08

And SOOOOOOO...

And so we have quite the update. On 8/16/08 Ezra stopped urinating. What is wrong with that???? Well, it means he gets puffier and he is not able to rid his body of the toxins. SO...we, meaning the doctors and Beau and I decided that Peritoneal Dialysis. It is a temporary Dialysis treatment until his kidneys start kickin in and working how they are supposed to.

The day of the surgery to place the catheter the Doctors switched Ezra over to a conventional Ventilator. Meaning not as high powered as the Oscillator that he is on. The reason for this was because when it was time to take him into the O.R. it would be easier to manuever with the smaller ventilator. I'm sure there were other reasons but i am sure I forgot them. Sorry. Anyways, his surgery was set for 6 p.m. on 8/17 and Ezra was doing really great on the Conventional Ventilator so we decided we would go over the Hunter's for dinner at 3:30. Right after Beau and I left Ezra started to have a Pulmonary Hemmorage. In other words blood started to come up his Tracheal Tube (the tube that is pushing air into his lungs). They were able to get this under control but what that meant is that he was too fragile to take to the O.R.. SO the O.R. came to him.
Meanwhile at the Hunter's (totally oblivious to what is going on with our little Ezra because I left the damn cell phone in the car on accident) Tucker and Tilly were having a great time spending time with Mom and Dad and their little cousing Nik Nak and Auntie. Tucker and Tilly really are champs! For all the stress and unbalance in their lives right now they have been truly amazing. Beau and I are truly blessed to be their parents.




After about 3 1/2 hrs or so in surgery they were able to place the Catheter exactly where they wanted it. Ezra is doing well on it and we pray that he continues to do well and that we can avoid infection. They are keeping him pretty heavily sedated and comfortable right now. Just one more hurdle to overcome. We love this little guy and are so thankful for him in our lives.

Hello Again...

Well, some good news and bad news today. We will start with the good news. Ezra gets his labs drawn on Monday and Thursday to see how his liver is doing. Well, yesterday they tested Ezra's PT and Platelets and his PT came back 18 and Platelets came back at 60. On Monday they were pretty much the same. On Wednesday Ezra stopped urinating and they thought maybe it was because he now has a Fungal infection. His blood pressure was pretty low as well. The Kidney Doctors came and took a look at him. They thought that maybe because of all of the Dietretics that they were giving him it just kind of pooped his kidneys out. Well Thursday they put him on Dopamine to try to get his blood pressure up. The Dopamine did raise his blood pressure and because of that he is now urinating again. FABULOUS! Also on Thursday Ezra coughed up a bit of blood. I was WORRIED...but there hasn't really been any more. SO they checked his clotting factors again just to make sure that wasn't the cause for the bleed. SO today we got the clotting factors back and his PT is now 16 PTT is 45 and Platelets are 79! YAY! At least Beau and I are happy about that. I'm sure the Doctors have to be as well. SO I think I included the bad news with this long and totally not gramatically correct paragraph. So yes, Ezra is fighting another infection but it is "treatable". So here are a few pictures of the past couple of days. I think I am going to do the next post about Tilly and Tucker because they are such champs and have been amazing through all of this.

p.s. Just a note. Ezra has not had Platlets since Saturday the 9th of August. Awesome because he used to be needing platelets like every other day. Also he has not had any FFP or Cryo for a very long time. He is also still very very swollen but as he heals and is able to fight off these infections he will start looking better.

Our Beautiful Ann

I don’t really know how to put into words how it is I feel about Ann. All I can say is that just saying that I loved her is not enough. My love for her went way beyond that. I felt like not only did I have a mother in law who was amazing in every way but I also had a friend. I thought that maybe the best way to do this is to write down some of my fondest memories of Ann. So here are just a few.
* Ann loved her grandbabies. Her life revolved around them. When we would visit her in Price or she would come out to Iowa she would always insist on bathing them. She loved that one on one time with them. Those bath times usually lasted a good hour in the tub.
* When we would go to visit her in the summer time she would take the kids out into the hills to look for treasure or just to go on a nature hike. Tucker and Tilly loved to go on adventures with her.
* Ann was always thinking of others. She was so generous with her time and love and anything else she could give to help somebody out. When she was here right after Ezra was born she scoured my house. Cleaned everything and even reorganized my kitchen for me. I remember I came home one night from the hospital after being with Ezra and she was limping around. I told her to just sit down and relax. She told me..”No, I need to do this, I need to help out in any way that I can right now.”. That is how she was every minute of every day of her life.
* Ann was the best mother in law anyone could have ever asked for. Every time that we were together I felt nothing but love from her. She used to go through these home magazines with me and tell me what she thought would look good in my house or maybe what she was thinking of doing to hers. I know that may seem like a silly memory but to me I cherished those times together. I felt like we were such good friends.
* Whenever I would get my hair done and it was a different color or length she would always tell me how it looked beautiful on me even when it really didn’t. Even when my husband was standing right behind her laughing at me.
* I felt a closeness with Ann that I never thought I would have with any other woman besides my mom. There were several times where I called her mom and then quickly corrected myself. She would look at me with her beautiful big eyes and smile and say, “I don’t care if you call me mom, I like it.” I wish I would have done that more.
* Now I know this is going to be a surprise to some of you but Beau and I would some times have a bit of a disagreement in front of her and she would just stand there quietly and then when it was over and Beau left to cool down she would get this big smile again and in a very sweet and loving voice try to explain why Beau was saying what he said or doing what he was doing. It made me feel good because it made me feel like she didn’t want me upset with her baby but she also didn’t want to see me upset.
* When I was pregnant with Tucker and still working in Salt Lake Ann would come up from Price and we would go to the Olive Garden for lunch. She loved their salad and breadsticks. She would always tell me it was so “nutritious” .
* When Ann was here last she stayed at the house with us. We don’t have an extra bed but we did have a single mattress. Ann put that in the kids room between their two beds and laid with them every night. One night we came home and she was curled up in a little ball at the end of the mattress and Tucker and Tilly were all sprawled out on her mattress. I know she didn’t get one good nights sleep but I know that it didn’t matter to her. As long as she could be close to her precious babies.
Those are just a few of the many many memories that I have of my beautiful mother in law. I wish everyone could have known her because their lives surely would have been blessed if they had. I love her and I know one day I will see her again. I wish I could have given her one more big hug and told her how much I really did love her. I hope she knows that now. She will be greatly missed. I love you Ann.

Below is a copy of her Obituary.
Ann Ross "Grannie Annie" PRICE- Our beloved wife, mother, grandmother, great-grandmother, sister, aunt, friend, and teacher was taken from us too soon in an unfortunate car accident on August 4, 2008. She will be greatly missed by all who knew and loved her. Ann was born on October 14, 1950 in Taos, New Mexico to Cleotilde Vigil and Amadeo Romero. She graduated from Hillcrest High School in 1968 and later earned her Associates of Science degree from the College of Eastern Utah. On September 6, 1970, she married Ronald G. Ross in Elko, Nevada, their marriage was later solemnized in the Manti LDS Temple on December 7, 1994. Ron and Ann moved to Price in 1974 and raised their family of four sons. While residing in Price she was employed for 25 years in the coal mining industry. Her family was the absolute love of her life, especially her 14 grandchildren who affectionately called her "Grannie Annie". Ann was a caring person who had a positive influence on the lives of those she touched. She never suppressed a generous thought or deed; she was a peacemaker and a woman of unique strength and character. Should each of us be able to tear out a page from Grannie Annie's Book of Life and incorporate the wisdom contained therein, we would all be a better and more loving people. Ann you are so dear, so sweet, so beautiful, so precious to us. You are truly an elect lady and we are going to miss you more than words can express. May God be abundant in his blessings upon you. Ann is survived by her loving husband, Ron Ross, Price; four sons and one step-daughter: Don (Lara) Ross, Grand Junction, CO; Ron (Julianne) Ross, Sandy, UT; Scott Ross, Denver, CO; Beau (Sarah) Ross, Coralville, IA; Kari (Reed) Smith, Springville, UT; grandchildren: Noah, Sophia, Avabelle, Lola, Eliza, Isaac, Tucker, Tilly, Ezra, Trevyn, Daryk, Danyelle, Mytchell, Mckenzy, great-granddaughter, Ryan Rae, and one more on the way. She also leaves behind four brothers and three sisters, Ben Valencia, George Gonzales, Tom and Tim Romero, Orlinda Petersen, Lillian Taylor and Irene Leyba, and many other extended family members. Funeral services Saturday, August 9, 2008, 2 p.m., Price Fifth LDS Ward, 545 E. 400 N. Family will receive friends at Mitchell Funeral Home, 233 E. Main Street in Price Friday evening from 6-8 p.m. and at the church Saturday one hour prior to the service. Interment, Cliffview Cemetery, Price. Arrangements entrusted to Mitchell Funeral Home.

We're UP and then DOOOOWN...

******* WARNING: this is a lot of information ********
So the past three days have been a bit crazy. On Monday Ezra was extremely swollen...or Edemadus. His little belly was extremely swollen and they thought he may have Ascites. Come to find out he didn't have that and that is a good thing. He was and is just really swollen. SO much that his little legs wouldn't bend for a while. The Doctors upded his Lasiks to three times a day orally and gave him some Albumin. Albumin from my understanding is a protein that the liver makes and if it is low then will you get fluid build up. So Ezra started looking better the next day which was Tuesday. He wasn't as swollen and he was EXTREMELY alert. He was awake a ton and just as cute as ever. TODAY, not so good. This morning when the nurse took Ezra's temperature he had a fever of about 101. Because of that they checked his C-Reactive Protein and it was at 1.2, so that wasn't good. That meant that there was an infection. So they gave Ezra some IB Profen and he seemed to be "okay". At one point Ezra started crying and I noticed that he had blood coming from his nose and mouth. The nurses suctioned his nose and we thought that maybe it was just a little bloody nose that went down into his mouth. THOUGHT is the keyword. They decided to check all his labs again today and tested his CRP level again. His CRP came back at 2.0. That was just withinn 5 hrs that it rose. They did a chest xray and found a dark spot on his lungs and they told us it was Pnemonia. So they had to put an IV in him to get some Antibiotics going. I believe it was when they were doing the IV they noticed that he had blood coming from his mouth. Right away they moved Ezra to bay 1 of the NICU (for the really sick babies) and Inti bated our little man. Ezra was having an extremely hard time breathing and his blood gases were really bad. All I can tell you from that is that he had high levels of CO2. So Ezra is now Inti bated and also has a tube going into his stomach to suck out the blood. He is still currently bleeding in his stomach and they are still giving him transfusions of blood and trying to get the bleeding to stop by giving him Cryo, FFP and Platelets. They also took a blood culture and have found that there is a bacteria infection. Sooooo all in all Ezra is having an Extremely Hard day today. No pictures today but soon I will post more.