FYI...

Well just thought I would let everyone know that the BLURB website where you can make your blog into a book, is no longer compatible or whatever with blogspot. YEP I AM SERIOUS! FRUSTRATED HERE! If anyone knows of a website that does have the ability to make your blog into a book PLEASE LET ME KNOW. Thank you so much.

Our Angel

So here I am at 11:30 at night trying to figure out how I am going to write this. I mean how am I going to write this? I’ve thought about this over and over and over again. I don’t know how…and honestly I don’t want to know how.
Ezra passed away October 3rd 2008 at 4:30 a.m in my arms. Both Beau and I were with him. He was due for a surgery in the morning of the 3rd to put a PD Cath in to prepare him to come home. During the night Ezra became very ill. By morning Ezra had a very slim chance of survival because he was so ill. So the Doctors did an Exploratory Surgery to see what was going on. A blood clot had stopped blood flow to most of Ezra’s small intestine. Because of that Ezra’s slim chance of survival was gone.

When people would go into Ezra's room to see him they would always comment on how strong he is. They also commented on how before going into his room they would be so worried and anxious and then after entering his room they felt this calming and peaceful feeling around them. I believe that it was Ezra. I believe that they felt his strength and love. And I believe that the Lord was there calming as well. He probably knew that our little guy need positive feeling around him at that time in his life.
I don't know what to write. What mother or father knows what to write about their baby that was taken so soon? All I can do is write what I feel. That's all I know how to do.
My Ezra…my beautiful, beautiful Ezra. I wish you could have stayed with me. I wish that I were holding you right now and smelling your sweet baby smell. I wish I were getting up in the middle of the night to feed you or just hold you and comfort you. What I would do to hold you again…or smell you. Just to feel you. To hear your cry…I dream of your cry.
I am so angry at times…well most of the time, that you were taken from me so soon. Angry and hurt I guess. Why did God take you so soon? People tell me that you were to pure. They tell me that I will be with you again. I guess that should bring me comfort. Maybe someday it will. Not right now though. It is too painful right now.
I am grateful for your strength. I know that every day that you were here with me was a miracle. I believe that you wanted to meet your mom and dad and when you did you begged God to let you stay just for a bit longer. I believe that he told you it wasn’t going to be easy, but you didn’t care. You are such a strong boy. Because you stayed we got to hold you and bathe you. We got to smell your sweet breath and hear your sweet cry. How grateful I am for everyday that I did get to hold you and sing to you and read to you.
I wish I could have taken the pain away. I would have taken it if I could. I would have taken everything. What was hardest was not being able to help you. All we could do was be there. How helpless your dad and I felt. I think the most important thing to a parent is protecting their children. How hard it is to know we couldn’t protect you. For that I am sorry. I am so sorry.
I miss you terribly. Every minute of every day you are on my mind. I am always wondering where you are. Are you here with me or are you busy somewhere else right now?
I know that you are okay now. I know that you are happy. I know one day I will see you again. And hold you…and never let you go again. And for that knowledge I am grateful. How lucky we are to have such a beautiful strong boy like you.
I am so thankful for your strength and for staying for as long as you could. I’m thankful I got to see your beautiful face. We will miss you everyday until we are with you again.

Ezra...

Well I haven't posted in a little bit so I will do a quick update. I have alot of pictures that I need to post but I just haven't had time right now. I will though. So Ezra is still on the CVVH. They took him off for 24 hrs to see if he would urinate on his own. Well in the 24 hrs he was of he had about 2 cc's of urine come out. Yeah...not a whole lot AND he got puffy again. So he is back on the CVVH and thinner than I have seen him in about 2 months. They are hoping that his kidneys will recover in time. We just need to be patient. If they do not recover he will most likely need long term care until he is able to recv a transplant. BUT that is down the road and we don't even know if that is something that needs to be thought about right now. So we won't talk about that right now. His eyes are open quite a bit and he is starting to focus them a bit more. He really is a beautiful boy.
Tucker and Tilly are doing good. We were able to go to the Apple Orchard as a family on Saturday and it was a blast. The kids loved it! I loved it. At the end of our long walk through the orchard we sat down and had a wonderful HOT apple turnover. YUMMMM. Tucker kept on telling me how much he loved apple pie. Oh, well actually we didn't walk the whole time. We were able to hop on to the tractor going by. Fun stuff.
Beau is doing well, he has recently told me that he is a great photographer and from now on he will be the one taking the pictures. So all the pictures from the Orchard are from Beau. I must say he really does get some pretty things on camera. He's so funny. Love that guy. So I know that is short, sweet and choppy but that's all I have time for rightnow. I will post pictures in a bit.

"White" Poppa and Bright Eyes...

We have been so lucky to have family come out and help us lately and Ron (Beau's dad) just came out for 10 days to spend time with us and the grandkids. What a WONDERFUL visit it was. I am happy we were able to spend time with him and he was able to see Ezra. Tucker has named him the "white" Poppa for obvious reasons. It was so cute the whole time he was here Tilly would just keep telling him that she loved him. This morning he was in the bathroom and Tilly knocked on the door and said "Poppa I love you." So dang cute. Tucker loves to tease Poppa and Beau with the whole Yankees and Red Sox thing. Somedays he is all for the Yankees and others he is all about the Red Sox.

Ezra is looking pretty good. He has lost alot of fluid and some of his numbers have improved. He is doing really well on the Dialysis. We are hopeful. And of course he is still not out of the woods but this is yet another good day. One of the most exciting things was to come in and see his beautiful eyes. Beau and I can't get enough of them. What a beautiful boy.

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