Thursday, September 25, 2008


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.

Sunday, September 14, 2008

"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.

Wednesday, September 10, 2008

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.

Saturday, September 6, 2008

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.


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.