View Full Version : Paul Update Thread

11-14-2008, 02:34 PM
I'm getting a few PM's and so I started this so I can share news with the AW family which has been awesome helping me through this ordeal.

Currently, we are in a hospice counting down the days to surgery. I wasn't happy about moving from the hospital but insurance wasn't happy we'd been in the hospital since October 30th. He's only a mile away from the actual hospital and if all he needs is to be monitored and fed, it's okay.

But I will say, he's had a lot of "episodes" since we got here. His heart rate is up. His respiration is up. His blood oxygen levels dropped to 80 once and he turned grey. (That has never happened and I hope it never happens again). I've had a melt down at the staff. They wisely took Paul and rocked him and suggested I sleep. I was and I'll admit it, a crazy person.

The surgeon we have is awesome so I'm not so worried about the outcome, I just sort of wish it were over and really wish I didn't know as much as I know about how they are going to fix his heart. Surgery set for November 20th.

Normal life will return some time around December 5th or so. Look for Christmas cards around Ground Hog day.

11-14-2008, 03:29 PM
:( So sorry about the bad episode he had, but the hospice staff sounds wonderful and I'm glad you have them for support. Fingers crossed that the rest of his time there is incident free and surgery is a sucess :Hug2:

11-14-2008, 05:21 PM

Ol' Fashioned Girl
11-14-2008, 05:27 PM
(((((More hugs.)))))

11-14-2008, 05:36 PM
Chocolate, then hugs. I remember well my friend Betty's wisdom: in times of medical crisis, you get to eat anything you want, so long as you don't make yourself sick, for however long that crisis lasts.

Oh, and the timing is perfect for the Maryn Friday Breakfast, which is pancakes in the shape of your inintials, and one larger one with a smiley-face, plus apple juice and coffee or tea. Eat up!

Maryn, who doesn't eat breakfast in the real world

11-14-2008, 05:39 PM
sounds perfect. thanks.

11-14-2008, 05:43 PM
Big hugz to you and all of your family, Sherry. :Hug2:

11-14-2008, 05:51 PM
I'll add to the (((((((((((hug pile)))))))))))), and offer some tiramisu. So sorry you're going through this, Sherry.

11-14-2008, 07:02 PM
Our thoughts and prayers are with you and yours, milady.

11-14-2008, 07:11 PM

11-14-2008, 07:16 PM
My heart goes out to you.
REALLY HUGE HUG to you and your family.
Dec. 5 will be here before you know it.

11-14-2008, 07:19 PM
Oh Sherry, my heart aches for you. I'm thinking of you and Paul.

11-14-2008, 07:33 PM
Even more hugs and lots of prayers. And, of course, more chocolates!

11-14-2008, 09:46 PM
Paul Update:

They gave him more lasix, they took an x-ray to compare his lungs from Tuesday to today, and I spoke personally with the Cardiologist. He ordered blood work and has directed the Cardiologist on call to call him after this afternoon's examination. In the meantime, he has started to run a slight fever (100 rectal), and they have started antibiotics as a precaution. They have ruled out Pnuemonia. The lab results so far have been good.

The Pediatrician here is excellent and she's told me if she feels in any way uncomfortable with Paul's numbers, she'll preemptively send him back to Children's.

As a side note, his blood numbers comparitively from the last time (tuesday) are better with respect to sodium, so he is tolerating the high calorie concentrate formula well.

He weighed in at HSC as 8lbs. 3.6 oz but I've learned, each scale is slightly different, but they do surmise he's gained a bit from the other day. They do worry he's working so hard, he'll burn that off. So they're giving him tylenol and hoping the ease in the fever eases his heart rate. So far, I'd say I've seen a modest improvement, from the 160-up to having a low range of the 150's. Respiratory is still high.

Thanks everyone!

11-14-2008, 09:50 PM
:Hug2: Love, hugs, and prayers for She Hulk and family. Yes! Get sleep! You need it! You deserve it!

Jersey Chick
11-14-2008, 10:07 PM
We're keeping you and Paul in our thoughts here - {{{{HUGS}}}} and more to you. Don't forget to take care of yourself as well - spoil yourself when you can (like all the comfort food you can handle)...

Soccer Mom
11-14-2008, 10:21 PM
Thanks for the update on Paul. We'll keep praying for you and the little guy.

11-14-2008, 10:26 PM
We'll definitely be keeping you guys in our thoughts. Hopefully all goes well. Do remember that you need rest, too.


11-14-2008, 10:29 PM
Keeping y'all in our thoughts and prayers here, too. :Hug2: Take care of yourself, too, Sherry.

11-14-2008, 10:33 PM
:Hug2: Big hugs! Hope all goes well.

Calla Lily
11-14-2008, 11:31 PM

11-15-2008, 12:33 AM
:Hug2: Glad to hear your little fighter is doing well. Your family is in my thoughts and prayers.

11-15-2008, 02:14 AM
Paul update Evening: Being transfered Back to Hospital --which we are glad of, due to fever (which we are not happy about), but it is a good thing. Thanks everyone!

11-15-2008, 07:27 AM
Oh Sherry. I'm sorry he has a fever, but I'm glad he's going back to the hospital so he can get the help he needs. Big hugs to you. And I agree with Maryn, eat whatever you want. When we were waiting for Jenna's diagnosis, I ate a whole Jello No-Bake Cheesecake by myself. Then, after I got the diagnosis, I went and bought three of them to have when I was feeling really sad. Food is always a comfort to me, guess that's why I'm overweight.

11-15-2008, 07:34 AM
Best wishes through this awful time, Sherry.

11-15-2008, 08:25 AM
Big (((((((((((HUGS)))))))) and prayers for you all and hope Paul recovers quickly. Good vibes and thoughts sent too.

11-15-2008, 10:27 AM


Lots of hugs for both of you, always.

11-15-2008, 12:38 PM
Oh I feel so much for you. (((((((((Big big hugs)))))))))

11-15-2008, 10:58 PM
Paul update. We've been moved back to Children's because of his fever and high heart rate. He was hard to get to rest yesterday and none of his numbers made us happy. High heart rate, high respiratory rate, high everything. So now we're back and just watching and holding on until Thursday, when they'll do the open heart stuff.

This just rots.

11-15-2008, 11:19 PM
Oh, Sherry. :Hug2: I'll keep praying for Paul, and for you all.

11-16-2008, 12:14 AM
Oh Sherry, big, big hugs to you. You were so supportive of me during our difficult time, and I wish I could do something to help you.

Soccer Mom
11-17-2008, 07:50 PM
Just bumping this to see if we have another update.

Praying for you and Paul, Sherry.

11-17-2008, 08:14 PM
I don't envy you and I do wish I could be there to help. I can only offer a hug and encourage you to keep pressing on.

I'll say a prayer for you both.


11-17-2008, 08:39 PM
((More hugs))

11-17-2008, 10:14 PM
More hugs from me, and also hoping for an update soon.

11-17-2008, 10:26 PM
Update on Paul.

Sorry it took me a while to get back to this. I wanted to get through rounds first and then had a crisis with another family member to manage before I could type this report.

Paul has a slight fever still today. There is a chance and I really hope it doesn't happen, that surgery will get moved to next week owing to his fever. His father and I are as steeled up as we can be for this to take place and it's exhausting to just keep going forward on this with the rest of our lives in limbo in the meantime.

Paul is now 8 lbs and 12 onz. We are ecstatic about that and hope he makes it to 9 for the surgery. He might. Grow Paul Grow. Think Fat thoughts. He's currently taking much of his formula via bottle which is great. Most babies with Downs Syndrome have trouble sucking a bottle and the heart condition makes them tire out quickly. But Paul is strong. Strong enough to pull out his feeding tube even as his father holds him and tries to stop it from happening. Right now he's sleeping and he's had a bath so as far as he's concerned, this hospital business with the extra hands (nurses), it's alright.

On a personal note, this thread and the emails and reps and prayers all help keep my spirit going. It's very hard to have been away from having a whole home at home since October 30th.

Starting to learn more about the road to recovery and it's a bit overwhelming but that's why I want to get the surgery done, because we can't get to healing and home without it.

11-17-2008, 10:39 PM
Still thinking of you, Sherry. I know you're tired, but you're doing just great!
Thanks so much for keeping us updated. With all you have to do, that you would make telling us how things are going a part of your day is very special. Your big AW family is praying and keeping you in our thoughts. Big hugs to you. You can lean a little extra on our shoulders while we hug you if it takes some weight off of your own.
Grow, Paul, Grow!!

11-17-2008, 11:27 PM
Wrap your shawl around you, and the blankie around Paul, and know that I'm with you. :Hug2:

11-18-2008, 05:24 PM
Paul weighed in at 8 lbs. 11 ons. He is still struggling with a slight fever. I'll know more after rounds.

11-18-2008, 06:08 PM
Grow Paul, grow!!!!!!!!

:Hug2: You and your family are in my thoughts, Sherry.

11-18-2008, 07:59 PM
Paul still has a slight fever but the surgery is still prepared to go through on Thursday. That could change. I'm mentally preparing myself for that possibility but I want to just scream.

So I won't run out of things to preoccupy my brain, my eldest son has a scheduling conflict. He is in band, which is a graded class, and he is in a play at another high school. Guess when opening night and a mandatory performance are....that's right, Thursday night.

So, we face a lovely choice. He's going to be either 1) destructive of a whole three months of rehearsals by eliminating a key character from the play or 2) take a zero on an exam. When I called the school about the problem, they told me my son should have known before he tried out that there was a performance in November. That this was a "classic student scheduling error." Maybe I'm a bit slow on this...but I don't ever remember planning my life out in high school as a sophomore, three months in advance. I admit, I lost it at the teacher, No one but you is going to know one trombone out of an orchestra of 100+ is missing.

They're not moving. I don't know that I'm entirely rational in my decision making at the moment but I felt my son should take the hit on his grade. So did his dad. So did he. That will only affect him and only once. The play affects a whole community because he is a lead. It was already frustrating to me that I was going to miss his play because of Paul's surgery. Now I really wish I could be there to support him for putting community before himself.

So today....I'm mad. Easily provoked. Maybe I should go to TIO and let off steam.

11-18-2008, 08:06 PM
:Hug2: I'm praying for you and your family. I would be the proudest mom in the world if my child was willing to take a hit on a grade to stand firm by their principles. Hope things get better :)

11-18-2008, 08:11 PM
Sherry, as the mother of musicians/actors/writers, and being one myself, I can totally understand where you're coming from. And even if he did plan out his schedule three months in advance, all that would give you would be three months' notice that you have a scheduling conflict.

I strongly believe you made the right decision. I know it's the one my kids and I would have made.


11-18-2008, 09:52 PM
Hugs and Prayers for Paul, Sherry and the rest of the family!

11-19-2008, 07:06 PM
Tomorrow is the day.

Paul did well last night and the surgeons have a spot booked for him. We are now getting some of the gory details that we have to know. Mortality rate, Morbidity rate, duration of stay, likely need for additional surgery, what we will see when we go to ICU, and tips on coping with having a child there for 4-5 days.

My husband spent the night at the hospital and I went home, but most of my children were asleep and I couldn't chance waking them, as it would have been hard on my mother-in-law if she had to start her work of caring for all of them with the kids crying for Mom. I did see my oldest four and there were lots of hugs. That helped.

We just have to keep moving towards this, he cant' get better until we do this. But knowing they're going to cut open his chest and cut open his heart which is the size of a grape tomato, that's just unreal. Thanks for the prayers.

Jersey Chick
11-19-2008, 07:24 PM
We're still sending those good vibes and a zillion :Hug2: your way, Sherry.

11-19-2008, 07:27 PM
Adds a few bazillion more hugs...

11-19-2008, 07:27 PM
More hugs from here, too, Sherry. I'm glad the hugs from the kids helped. Paul will get through this and so will you.

((hugs and prayers))

11-19-2008, 07:55 PM
Blessings and prayers for you and your family, Sherry.

11-20-2008, 05:14 PM
Dear Everyone, Today is the day. Paul's surgery is set for 9:30. It will take from then to around 3 for the procedure and all that it entails to be done. We will be allowed back to see him in the CICU once it is finished.

Talking to the surgeon last night, the recovery time for Paul as versus other patients with similar conditions is decidedly longer, or at least projected to be. His left ventricle cavity is according to ultrasounds, smaller and this poses the complication.

Still, Paul is very alert and strong and awake this morning. He cooed and tried to roll over and found his thumb to suck despite the IV today. Thank you for your prayers. The next seven to eight hours will be very long. To those of you who live in the area and who have provided rides or offered help in some physical way, I and my family thank you. You have performed corporeal acts of mercy and they have meant a tremendous amount to all of us.

The calls, the emails, the play dates for kids, the unexpected package in the mail, the reps or just extra hugs all have helped us get to this day. Hopefully, now, we can get to the business of healing. It is very hard to surrender our little son to this operation, knowing all the risks, having them freshly remembered via the discussions with the doctors.

I don't think I could do it if it weren't vital to his survival.

I'll probably post late tonight.

11-20-2008, 05:43 PM
Praying for the best for you, Paul, and all your family.

11-20-2008, 06:36 PM
*Sends many good thoughts*

11-20-2008, 06:58 PM
Praying hard for a smooth and successful surgery, Sherry, and my prayers for you all. :Hug2:

11-21-2008, 03:37 AM
Thank you all so much.

Paul is doing well. The surgery is done. We now start the business of healing. Thank you. Thank you. Thank you all.

I feel like doing cartwheels down the hall of the hospital and sleeping for a week at the same time.

11-21-2008, 03:46 AM
That's great to hear that he..and you are doing so well. :Hugs: and prayers for continued good news :)

11-21-2008, 03:50 AM
Sherry, that's wonderful news! :Hug2:

Kitty Pryde
11-21-2008, 04:07 AM
So glad to read that the surgery went well! I'm sending best wishes for a smooth recovery.

11-21-2008, 04:21 AM
Thank you all so much.

Paul is doing well. The surgery is done. We now start the business of healing. Thank you. Thank you. Thank you all.

I feel like doing cartwheels down the hall of the hospital and sleeping for a week at the same time.

Been waiting to hear that all day, Sherry. Wonderful news. :)

11-21-2008, 04:26 AM
(((Hugs)) Great news! What a lovely thing to log back on to.

11-21-2008, 04:40 AM
Hooray! Praise God. Hugs to you and your whole family. I really hope you get to rest soon.

11-21-2008, 04:47 AM
Wow, I haven't been around and I missed all of this. So sorry :-(

Glad to hear it went well and that he is on the road to recovery.

11-21-2008, 05:06 AM
Wonderful news, Sherry! Now go get some rest. :)

11-21-2008, 06:01 AM
I'm so glad everything went well. Now for the road to recovery!

11-21-2008, 06:52 AM
Hooray!!! My husband and I have been praying that you and Paul would make it through this well. Now we'll be praying you can go home ASAP and get back to the business of being mommy and baby!!!

11-21-2008, 02:51 PM
Sending positive thoughts across the waters, ST - Hoping he heals well and smoothly.

11-21-2008, 03:49 PM
What a huge relief. Thank you so much for the update.

I hope the healing and recovery go quickly for Paul (and YOU).

Sending Hugs and Cartwheels,


Ol' Fashioned Girl
11-21-2008, 04:08 PM
See?! I got what I wanted for my birthday! :D

11-22-2008, 08:32 PM
OFG....me too. Best wishes.

I'm going to go cry now and have a good nap.

Jean Marie
11-23-2008, 12:37 AM
I've been doing lots of praying for you and the little guy, Sherry. Nothing beats the power of prayer, nothing. Well, aside from crying and napping, of course :Hug2:

Best news I've heard in months.

Old Hack
11-23-2008, 01:02 AM
I checked in to find out how Paul and Sherry were doing, and I have to say now how in awe of Sherry I am.

I struggled last year when I spent five days in hospital with my 11 year old, who was having elective surgery--not life-saving, edge-of-your-seat stuff. Meanwhile Sherry keeps on saying how supportive we're being but really, that's the easy part. She's keeping going, and keeping going, and she just never seems to flag.

I'm standing up here, and admiring you from all this distance away. Really. Well done to you, and your family, and to the lovely Paul for all the hard work you've put in. Fingers crossed for an eventless recovery for all of you. And congratulations to you all.

11-23-2008, 09:28 PM
Thanks. I feel flagged. I feel permanently distracted. Paul got off the respirator last night late and will be moved OUT of the ICU today and into regular cardiac care. We can't believe it is happening so fast. Today is his father's birthday so Paul decided to give his dad a present and break out of the CICU.

11-23-2008, 09:44 PM
Great news! Let's hope he's as fast as he is loved. You'll all be home in no time.

Ol' Fashioned Girl
11-23-2008, 11:51 PM
It's all that Scorpio power! :) Yay, Paul!

11-24-2008, 01:38 PM
So glad the surgery went well and paul's recovering fast. Big hugs.

11-24-2008, 01:51 PM
I'm really glad everything is going great now :) Lots of hugs for you, Paul, and family.