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Hi, I wanted to give an update Since Andrew will be having a cath later today. He was readmitted the other day. By readmitted, I mean from the Ronald Mcdonald house, they have been in and out of both the hospital or Ronnie house since I started this thread, he hasn't been well enough to go home since things can change very quickly and his doctors want him close by. When he is doing well, they let him go to the Ron house, which as you can imagine is so much better than in patient and when he is there they get to go out and do some things like ball games ect.
So here yesterdays update, about what is going on and I will update after his cath today. Hopefully with good news.

Monday Sept 13 andrew is back in the hospital
Posted 2 days ago
This morning Andrew had a quick episode of some vision disturbance. The opthamologist had a fancy name for it but basicly she and probably most of the others here think that it is caused by one of the medicines he is taking to try to lower his pressures for transplant.We are weening him off that med and will start him on another one or two.

So he is in the PICU once again but feels totally normal. He would so much rather be at home or at the RMH but that is not what is happening.
They have moved his cath date up to Wednesday so pray for this. If a miracle happens and he is down alot then maybe he can get listed right away. No one is very hopeful that that has happened but it can't hurt to ask the Creator and Savior of the world for another miracle.

Well I need to get back to Children's and Andrew.He could really use some encouragement.

heart hugs,
Wendy


I wanted to give the link to Andrews page again incase anyone would like to leave them some messages, I know they really love to hear how many people have Andrew and his family in their thoughts.
its a carepage, so if you have an account there (it is free) his page name is AndrewJosephspage
IF you are new to carepages it is http://www.carepages.com/ then after you sign up/in go to AndrewJosephspage
 
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Andrew's cath results
Posted 57 minutes ago
Andrew is back. Unfortunately his pressures have gone up slightly and not down and his function is slightly worse as well.

This means he will need a VAD so all the decisions about how to do this need to be addressed. Continue to pray for us to have wisdom and to make the best decisions we can.

God is still in charge just because He doesn't answer the way we want doesn't mean He hasn't answered. I really didn't think it would be otherwise but it never hurts to ask.

We are suppose to meet with Dr Backer and some others to address questions and concerns I have and hopefully I can have some clarity in my heart about the where for all this.

Andrew is in good spirits and has eaten since the proceedure. Looks like we will be staying here for a bit longer.

heart hugs,
Wendy
 
Lynlw said:
Andrew's cath results
Posted 57 minutes ago
Andrew is back. Unfortunately his pressures have gone up slightly and not down and his function is slightly worse as well.

This means he will need a VAD so all the decisions about how to do this need to be addressed. Continue to pray for us to have wisdom and to make the best decisions we can.

God is still in charge just because He doesn't answer the way we want doesn't mean He hasn't answered. I really didn't think it would be otherwise but it never hurts to ask.

We are suppose to meet with Dr Backer and some others to address questions and concerns I have and hopefully I can have some clarity in my heart about the where for all this.

Andrew is in good spirits and has eaten since the proceedure. Looks like we will be staying here for a bit longer.

heart hugs,
Wendy
Click to expand...

Intensifying my prayers.
 
This is from last night, so he is moving this morning. Please keep everyone in your prayers, it goes well

Things are moving
Posted 12 hours ago
Believe it or not Andrew is moving to Northwestern tomorrow morning. I can hardly believe it myself. They have a bed already but we are waiting until morning as his doctors don't like evening transfers.

We have been talking with the team here and they really want Andrew to start moving twords the VAD and getting things ready for transplant and don't want him wasting time that he could be getting more tests done and further evaluations.

This has been a difficult transition but if we don't they fear he will continue to not make any decision and they worry that he may miss his opportunity to qualify for transplant. He is not obligated to go through with anything but will be able to get a feel for things and hopefully get his questions answered.

We have not yet heard back from the other institution but it was looking pretty improbable that we could do it both finacially and practicly.

It's been hard saying goodbye. It just feels so sudden although we have been talking this move for quite a while.

Tomorrow Andrew and I will go by ambulance to the hospital. I've lightened our load of stuff, leaving a lot of it at the Ronald McDonald house. I will stay here tonight so I don't miss the ride. I am glad they offered that to me.

Good night,
Wendy
 
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We are still at Children's
Posted 12 minutes ago
The bed that we supposedly had is no longer there so we are
still waiting to be transfered. It's 2:30 now. Not much to report
besides.



Wendy
 
Lynn, Thank you so much for keeping the community of heart brothers and sisters, mothers and fathers updated
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Lyn,

Glad you keep this updated.

Dr. Backer is the one that did my 2003 OHS, and I'm very familiar with the Ronald McDonald house near Chicago's Children's Memorial Hospital. Stayed there many nights prior to appointments at CMH. I hope the move to Northwestern (where my cardiologist is) works out.

And, of course, keeping thoughts/prayers coming.....



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Here are the last 2 updates,

Thursday AM
Posted 1 day ago
We arrived around 1 AM this morning. Not alot of time for rest so we are both over tired. They put Andrew in the CICU again. I don't know what the plan is. They have Tuesday penciled in for the VAD but not sure we are sure about doing this.

We both miss our old room on 5. Were both ready to just go home I think.

Wendy

We are moving to the floor
Posted 1 hour ago
Since we have decided not to go for the surgery this tuesday we are getting another room while we decide. It was just a little to fast for us.

We are going to room 1540. The fifteenth floor.

We had the fire alarms going off again while we have been in the ICU. What's with that and us? It was much louder here. Remember last time (at Children's) I didn't even know until somone told me. It was louder in the hall than the rooms but still very loud. It was tested yesterday but didn't last as long.

Randy and Joel just arrived. It is good to see them. Parking is really expensive though. they need to leave by 6 or so or it goes from $10 to $22. Hopefully we can get back later somehow. I'm not sure if I will head back there with them today or not. I really need to get changed though.

heart hugs,
Wendy
 
Wendy is having a tough time, , I feel so bad for them, plus they have been in hospitals since the begginning of July, when he went in for a cath just to check things and ended up needing to stay because his results weren't that good. So even if things were moving along smoothly, months like this are REALLY tough and take their toll on everyone.
Lyn

Sunday morning
Posted 4 hours ago
Well we spent our first night on the floor. I did go back with Randy and Joel and got a shower and a little food from the RMH. I had a good long cry wish I could say I feel all better but I don't. Randy brought me back around 7:30/8:30 last night. He offered to stay instead of me but then he would have to pay so much for parking it just wasn't worth it and I wanted to see how the floor would be for sleeping for Andrew.

It was dissapointing. For some reason they think they have to turn on all the lights, talk loudly for every check in the night. What is wrong with these people. I just can't believe this is considered health care. Is this really the best they can do? Pray for Andrew. Pray for me and Randy. I don't know what the answers are but I am feeling more and more uneasy here. I don't know what our options are. Pray for clarity and direct answers. Maybe it would be best to go home to think about this all.

heart hugs,
wendy

PS Andrew's blood sugar was low this morning so he had to drink some oj. He was complaining of being hungry last night. I think he needs more food.
 
While I was writing about the last post Wendy updated again, things are a little better.

Things look much better
Posted 25 minutes ago
We got to talk to several people this morning. Dr flagherty (sp?)the heart failure doc on service, and Dr Russell the surgeon and Andrew's nurse and Dr Ritter the hospitalist, and were able to address some of my frustrations and it looks like things will be different.

We have consolidated his medication times, got the blood suger checks stopped, won't have to have night vitals as they can see his monitor out there, got the okay for showers and found out he can have more to eat. I feel much better about things.

The option to go home on milrinone is out there so we will give this decision some more time and talk to more people until we know in our hearts what the right thing is. There has been so much change that it is hard to feel steady about anything right now.

Randy and Joel should be here shortly. It is always nice to be near family.

hugs to all,
Wendy
 
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