brian back in the hospital - 3rd time this summer

[Lynlw]

Oh Deanne I am so sorry Brian is going thru this again and know how you must be feeling. but you are NOT inadequate, you ARE one of the best , strongest ontop of things Moms I know. It IS awful sitting there watching your child suffer something yuo can not fix and make better. It is one of the worst things to go thru and I wish I lived closer to sit with you. IF you need to vent and want to call, I can pm my phone number if you don't have it.
It is so frustrating knowing what needs done and where Brian needs to be and having to fight for it, it is so draining just living this life as a Heart Mom or any Mom of a chronically ill child (no matter what the age) with out unneccesary stress, because people won't listen. You would think the BNP would be an automatic Heart floor red flag.
I know it won't help now, but Justin was in and out of CHOP over 8 months his first 2 years. and almost every admission, beside his schedualed surgery, were in the middle of the night, Friday or Sat nights. He also was DXD w/ BE on a Sat afternoon, broke his arm on a week end...Before we went to the ER we would page the cardiac fellow (or whoever was on call at that hospital) and they would call the ER let them know we were coming and start the papers to get him transferred to the heart floor, before we even made it to the ER. Can you make a standing arrangement to handle things like that if Brian needs to go to the ER?

 

[Lynlw]

well the ER docs lied to me. They did not send him to the heart floor. They sent him to the 5th floor but to the opposite side from where the heart specialist nurses and docs are. I was confused when we got to his room last night and I didn't know any of the nurses - now I know why. They came in at 7 this morning and said that the transplant coordinator wanted him moved to the heart floor so now we are waiting for a bed there. Meantime nothing is happening here I don't even think he has a nurse anymore because they know he is moving.

Yes, I will ask them to put a note in his chart, but their computers were down last night so I don't know if it would have helped. Last time this happened his primary care told me that if it happened again to have them call him directly (instead of the on call doc), but they wouldn't do it. I really want to rip someones head off, but I realize that it is probably misplaced anger at the situation that Brian is in. I will have to try hard not to be too much of a b&*tch when I firmly request the note in his chart.

I do want to say that they treat him phenomenally well here - as soon as he gets to the right floor.

Thank you all so much for your support, there are things I can say here that no one else understands

OH Deanna I didn't see this update when I posted, that is AWFUL and you have every right to be FURIOUS and most like I WOULD be ripping heads off, not only are they not listening to you, but are also wasting time and delaying Brians treatment because of it.
SInce you discussed this with his primary before and they STILL did not do what they were supposed to and call HIM, I would NOT leave with out HIS pager number. You can page him yourself from home before you even leave for the ER. There is NO excuse for this especially since you were there at 5 pm yesterday, most likely alot of the attendings were still there, they should have paged the primary and the transplant coordintator right then, not wait until the next morning.
Unless there were NO beds on the heart floor last night (and if that was the case they should have said so), there is NO reason for Brian to not be where the docs and nurses are the experts in what he needs.
I am sorry I'm not calming you down, this makes ME furuious I can't imagine you must feel like spitting nails.

 

[sylviayasgur]

dear deanne,
i'm so sorry you are going through this. as everyone else has said, it's hard enough just being a mom, i cannot even imagine your pain and feeling of helplessness in your situation.
please know that you are all in our thoughts and prayers.
please feel free to vent all you want/need; we are here to hold your hand through this.
try to stay strong. wishing only the best,
sylvia

 

[geebee]

Deanne,

I am so sorry this is happening. My prayers go out to Brian, you and your family.

 

[Marguerite53]

Deanne, your self control is phenomenal and must be commended!! We all agree that you can say anything you want to here....please vent!!

I'm sure your feelings of helplessness are mounting and quite possibly unbearable. Perhaps there are social workers on staff at the hospital who could help you through these ridiculous detours. I say this because I found an angel social worker when my dear, very demented 88 year old father got "dumped" by his assisted living residence just post surgery. He was in hospital recovering and they called me and said do NOT bring him back!! The social worker made a flurry of calls, fenagled an insurance write-up to keep him on the hospital ward until we could get him re-situated. Of course yours are such different circumstances, but these social workers have heard everything and are very, very, very capable of working out the little political nuances. They know what it takes to get sh*t done!!! So, just a suggestion.

I like what Bob said to you, "push back the dark and wait". I would also add, back away from the cliff!!

You may feel all you want, but you are NOT inadequate. You are amazing!!!
You have an army of love and support and fortitude behind you here. Keep using us and carry on.

Sending all my best wishes to your son, Brian.

Hugs.

Marguerite

 

[zipper2]

Sorry to see this news and my prayers for all of you

 

[CThrock]

So sorry this is happening again Deanne. May God give you the strength to be able to handle this situation. You and Brian will be in my prayers.

 

[Bina]

Deanne, I understand your helpless feeling... as Mothers we suffer when our children suffer.
Hang in there.

 

[hensylee]

checkin to see how things are goin. from your update, not well. tobago said it all very well. Thinking of you and Brian today. Blessins.......

 

[Star54]

I really wish there was something I could do, but I am sending you lots of prayers and vibes of strength...
Keep Strong..

Linda

 

[ottagal]

Deanne,
Just want you to know that I am thinking about you and Brian.
Sending you a BIG hug.

 

[Cozycat]

Deanne, my arms are wrapping you in hugs, I've put a big towel on my shoulder for tears and I am sending prayers to God that he protect both you and Brian during this frustrating time.

Love to both of you and your whole family.

Midge

 

[Eva]

Deanne,

So sorry for what you and Brian are going through. Lots of prayers.

 

[Danny]

Deane, please rant, i know it helps me. You are both in all our prayers.

 

[halleyg]

So sorry you are going through this....wishing Brian all the best.

 

[hall]

I am so sorry you and Brian are going through this again. I really feel for you. Absolutely.........vent. I hear your frustration. Bless you both. Prayers.

 

[EireCara]

Dear Deanne, I am so sorry that you are all having to go through this again. I feel you pain. I will keep you all and especially Brian in my prayers. (((((HUGS)))))

 

[bit of a chicken]

Feel really sad to read about this situation and hope that Brian gets the care he needs... soon !! As one mum to another... I wish you all well...I don't think your frustration is misplaced at all; I think you have every right to feel how you feel and sometimes some straight talking , politely, of course.. achieves what is needed~ in your shoes I would politely be expressing my feelings too and hope that when you do you get the follow up that he deserves. Good luck.

 

[kschul]

Prayers have already been said.

 

[briansmom]

sorry it took so long to post an update it has been a busy day and I haven't had wifi everywhere. I have been posting updates to my facebook which you can find with my email [email protected]. I can send those from my phone when I can't always get on the computer.

Ok, I was told this morning that they did not have any beds last night in the heart ward, I was not told anything about that last night. Also, Brian's transplant coordinator actually came to the house yesterday afternoon to examine him and decide if he should go to the hospital. The ER was waiting for him when we got there. Unfortunately, it was almost midnight before I found out that they did not want to move him to the correct floor. I was reluctant to wake up the transplant coordinater at that time. I am going to take Lynn's suggestion about getting the primary care's pager number. The transplant coordinator and the cardio were pretty upset that the ER put him on fluids when he was already overloaded.

So far today Brian has had an echo, a right heart cath, a TEE, a renal ultrasound and has been moved twice - once to the heart floor and now to ICU. His creatinine is up to 3.9 (usually dialysis at 4.0) his EF is 20 and his liver function is impaired. At this point they really have no idea as to what is going on. They thought they might have seen another aortic dissection going on in the arch so they did the TEE, but they couldn't really see anything there. They thought his new renal stent may have had a problem but the renal ultrasound showed blood flow to the kidney. On the other hand, the right heart cath was much better than they expected, but he is on a dobutamine drip now so that helps. This could all be from a virus. My husband and I both had gastro symptoms over the weekend and Brian had both diarhea and vomiting.

If his creatinine is up tomorrow I think they are going to put him on dialysis and do cardiac CT and renal CT to really know if there is a dissection of the aorta or stenosis of the renal artery.

I spent most of the day crying which for me is probably better than the alternative. My dad came down in the afternoon and my husband just got here so at least I wasn't alone for all of this.

Again, thank you so much for your prayers and support. I am really struggling this time.