http://www.sidsfamilies.com/blog/index.php Copyright 2010, Lydia Alves Lydia Alves en-US SPHPBLOG 0.4.8 http://www.sidsfamilies.com/blog/index.php?entry=entry100228-144254
Edward continued to have issues breathing, and they'd also noticed on an x-ray that he had a larger than average heart too. He's been bodybuilding for three years or so and had read an article that bodybuilders often have bigger hearts, so he didn't think that was a really big deal. He kept having a harder and harder time breathing though, he'd even wake up in the middle of the night gasping for air. He had an awful time getting going in the morning, but by evening he'd feel better. He had been overweight but had lost it all, it was the beginning of his bodybuilding days, and he had learned how important water is, so he was always drinking water, like, A LOT of water. It was nothing for him to drink a gallon of water over the course of a day. When we went to a movie over Christmas and he went out 3 times to go to the washroom, I told him that wasn't normal. He said it was from his water consumption but I pointed out if his body needed it, his body would be using it.

Well anyway the older doctor at the clinic got the results of Edward's test, it was about a month later by then, and he said that he couldn't see how the other doctor had said "pulmonary fibrosis" because he wasn't seeing that from the results he was looking at. He ordered a CT scan, an echocardiogram and also referred Edward on to a respirologist. I think the CT was done in November, thereabouts anyway.

In early December, Edward's breathing was so bad, we had to go to the ER again. Normally we'll wait at least 3-4 hours in an ER before we're done and home, but that day we didn't even warm up our seats in the waiting room and they called him in. Normally after a person is called in, they still wait an hour or two, and first the nurse will come, then residents and interns and students and researchers and so on (it's a teaching hospital), and then finally the doctor will come in, quite some time later. Not that day. We were in so fast, and Edward barely had his gown on and the doctor was there. She was asking him questions and he was answering then she asked him if he was otherwise healthy. He said yes, I frowned at him and said, "No." Then she asked him why his wife said no, so he went on to explain about the pulmonary fibrosis and everything he'd been going through. She went off to check for the CT scan results over the computer, and came RIGHT back, poked her head in and said that the test results did NOT support a finding of Pulmonary Fibrosis. She also explained that on an xray things will look one way, but the CT scan is a much clearer picture, and that he definitely did not have pulmonary fibrosis. She said she thought we'd want to know as soon as possible. We both cried, again, but happy tears this time, such a weight was lifted off our shoulders.

She ordered an x-ray for Edward in the ER and said she wondered if he was brewing a pneumonia again because she thought she saw fluid in his lungs, and again noted that his heart was enlarged. It had been early in the morning when we'd gone in, and Edward was feeling better a couple hours later, plus they'd given him inhalers again which helped him breathe easier. She was glad he was feeling better, but was concerned about what was going on so she ordered an echo herself, which was less than 2 weeks away whereas the one the other doctor had ordered, they hadn't even called to make the appointment yet.

So Christmas is almost upon us, Edward's echo test was a few days before Christmas, then we were off to Toronto to spend Christmas with his family. Some of his family members had come over from France for the holidays, (most of his family is in Europe as he was born in Portugal), and everyone was so happy and relieved that Edward was "okay". No more concerns about pulmonary fibrosis.

So the holidays came and went, we hadn't heard anything about the echo results. Edward tried to get a hold of the doctor without success. He found out she didn't have a practice, she only worked in the ER, and he had a hard time catching her. He did one day though, finally, January 21st. She hadn't received the results yet, and looked it up on the computer. She was quite upset because she SHOULD have received the results by then, but hadn't. She told Edward that it didn't look good. He had been having a really really hard time for the past few days, and she told him he'd better go to the ER.

Jesse drove him down to the ER. I had to stay with kiddos and we had a family counseling session that day as well. My mom came over after work to help with kids and Jesse came and picked me up and took me down to the ER to be with Edward. That's when I found out what was really going on.

What was wrong with Edward wasn't his lungs at all, the breathing issues were just a symptom. He had congestive heart failure. They said a heart pumps out about 60% of the volume with each beat, his only pumped out 26%. His heart was doing its best, but his body had been slowly filling with fluid, including his lungs. THAT was why he was constantly going to the washroom. THAT was why he had such an awful time in the morning, because the fluid would pool overnight as he was lying in bed. THAT was why his heart was enlarged. THAT was why he had such a hard time breathing, he was drowning in fluid. They admitted him, and the one doctor actually asked him for permission to write a paper on him (although he'd remain anonymous) because he's such an unusual case. She said it may even be published in a medical journal. Ever the kidder, Edward gave his consent but wondered about getting a copy. He's only 36 years old. Super healthy, worked out almost daily, lifts insane amounts of weight at the gym, normally so in control.. and ohmigosh it was hard to see him hooked up to monitors, so weak he couldn't even get out of bed sometimes. Simply shaving left him winded. The one doctor said he was on borrowed time. Another said he wasn't out of the woods yet. His parents and sister came from Toronto to see him in the hospital and there were just so many of us that Edward came down to the family room to visit instead of visiting in his room. He was so weak though. I saw in his eyes how wore out he was getting, so I left with the kids. He loved to see us all, but it really left him weak. I think it was the Saturday after he was admitted that I was there when a pastor friend of his went to see him, and another lovely couple he knew from the Businessmen's Fellowship as well. The couple arrived after I had left, but those three laid hands on Edward and prayed for him. He had not been doing well at all, the doctor had said he was going downhill. They talked about him possibly being in there for up to a month. Edward just wanted to come home and be normal.

After the three prayed over him, he started feeling stronger. In a few more days, he was home. They said that he wasn't out of the woods, but he was well enough to come home. He's on a no salt diet. He already ate like that, so it wasn't much of a change really, except that now when I cook I don't use salt at all and just let people salt their own food if they need to. He can't even have baking soda or baking powder though, so I've been trying to bake things that don't have either of those things. He has no restrictions for sugar or fat or anything, just the salt. He's not usually much for sweets anyway, but I think he felt a bit more normal when he could enjoy a brownie.

He's been back down to the ER once since then and they just checked him out and sent him home again, they wanted to keep him as a precaution but he really didn't want to stay and the next morning he already had an appointment at the hospital anyway, so they let him go home. The next day they gave him a cpap machine and showed him how to use it. The cardiologist thought Edward had sleep apnea and had ordered a sleep clinic. He thought that sleep apnea was the root of the problem with his heart. He said to think of his heart like a car battery, and said there are only so many times you can jump a battery before it's done. He said that the heart stops during apnea and then starts again and that it's really hard on the heart.

Edward's had a goatee since I think 2000. I'm not sure why he started it, but I was glad. He and Jacob looked so much alike, and without the goatee, every time I would look at Edward, I would see Jacob in him. He would also see his son when he looked in the mirror. Plus, he just liked the goatee. Well, that had to come off in order for the cpap machine mask to get a proper fit. He slept with it for several nights then got the call for his sleep study the night of Chelsea's birthday, February 25th. He really didn't want to go, at all. He was glad to be done with the machine for the time being though because they said he had to be off it for 4-5 nights prior to the sleep study. He let his scruff grow in a bit too. He dreaded going, and asked a lot of people about it too, friends who'd also had a sleep study that is. I think they reassured him. He mentioned canceling but I told him to go, because they were only going to tell him he didn't have sleep apnea and didn't need a cpap machine. That's what I was believing and praying for.

Well, Edward gets to grow his goatee again. He doesn't have sleep apnea. They said he does get a bit oxygen deprived when he sleeps on his back, so they talked about him getting some funky pillow or something that would wedge in behind him and keep him on his side. He's usually on his side anyway, so it's not much of an issue.

He hasn't seen the respirologist yet, it was put on hold until he'd had the sleep study. I'm not sure if they'll still go ahead with him seeing the respirologist or not at this point. He has a cardiologist though which we're thankful for because now someone is following what's going on with him. They said if he hadn't lost the weight and gotten so healthy, he would have dropped dead last summer when he first noticed it really becoming bothersome. They said it was his sheer strength and willpower that kept him going for as long as he did. He was super bummed with the doctor told him no resistance training (weight lifting). He told him he could do cardio or yoga. Edward joked with the girls about getting some Lululemon yoga pants and wearing those. I think they all cringed. Edward has been moping around the house though, I see him constantly looking in the mirror, watching his muscles shrink. I suggested he ask the doctor about getting back to weight lifting, so he did. He was positively thrilled when the doctor said he could do LIGHT weight lifting. I chuckled at that, because "light" to Edward, is not necessarily the "light" the doctor means! He promised to take it easy though. He's been back to the gym the past 2 days now and says he feels great.

The doctor had previously told Edward that he put him on a heart transplant list, just in case. He said he expects Edward will make a full recovery but just in case he doesn't, he didn't want to wait to put him on the transplant list because it's about an 18 month wait, and if he waited, and then put him on the list, basically it would be too late. Edward looked at me and said something like, "So if the medications don't work, I have to hope that someone else dies..." Such an awful thing to be faced with. Even though it was a "just in case" thing, we were more than a little rattled by that news, but are believing for his total recovery. Isaiah 53:5

The medications are helping, on the few days he's had a bit too much salt (he's only allowed 2000 mg and it adds up surprisingly fast), he feels it the next day, but the diuretic keeps the fluid draining so it doesn't build up. Although his blood pressure is perfect, they put him on blood pressure meds as well because they said it will make it easier for his heart to do its job. They also put him on potassium supplements because the diuretic apparently saps his body of potassium. So that's about it. I know God touched him, the Bible says a believer can lay hands on the sick and they'll recover, and that's exactly what took place. I'm looking forward to his next echo, whenever that may be, because I expect it to show he's fully recovered.

This has been one of the most difficult things I've ever faced, it was so hard not to panic. Edward said he believed he was going to die, I think he had given up when those three prayed with him. I'm so grateful they were there that day, and I'm so glad God heard their prayer and I'm so glad Edward is getting better. If you're a believer, please join your prayer to ours that Edward is healed.

He's got a lot of living yet to do :)]]> the Alves Family http://www.sidsfamilies.com/blog/index.php?entry=entry100228-144254 Lydia Alves Sun, 28 Feb 2010 14:42:54 GMT http://www.sidsfamilies.com/blog/index.php?entry=entry100228-002600
:(

Despite the problems I was having with my main mailboxes, I set up the 2009 Holiday of Angels address and managed to run that okay. I had to shake my head when I received SPAM in my HOA inbox within the first few days of having created the email address. There are some changes coming for the HOA next year which will hopefully solve the problem of people not receiving gifts. We're going to have a 1-way gift exchange for newly bereaved parents where they can opt to only receive a gift, and not send one in return. There's also going to be a card exchange for those who like sending cards. Plus the regular Holiday of Angels, with non-senders and those who received a gift but didn't sign the guestbook in previous years banned from participating. For those at Facebook, there's a group there for the Holiday of Angels. You can find it here: Holiday of Angels at Facebook

My husband works from home and has recently been considering changing to an office environment, and asked me if I'd like some space too so I could work on the site more efficiently, and so it would be easier to separate home life from what I do at SIDS Families. I think it would help and am hoping we're able to swing it. Our youngest will start school in the Fall too, so even if we can't get office space, that will help free up my time a bit.

We've come through Jacob's 11th birthday earlier this month. I was having a tough time, but am very grateful for the support I received from friends and family that day, it really helped take the sting out of a very sad day.

I had finished up one 2008 collage, but never got enough pictures to finish up the second one. There were too many to fit on just one collage, and it didn't seem fair to only put one out and disappoint a third of the families who had submitted a picture. I had hoped enough photos would have been submitted, but given fist the problems I had getting my mail, and now the mass deletion of my mail.. ugh. I'm so frustrated. I hadn't even begun to piece together a 2009 collage and now we're in 2010. Really *really* hoping for that office space so I can have some uninterrupted time to devote to all the SIDS Families things that need my attention. It's just gotten so hard to get anything done at home, the kids are always needing something, so the only quiet time I ever get is like last night - at 3 in the morning - and I just can't do that like I used to.

Back to my mail issues. I've deleted my jacobsmommy@sidsfamilies.com address. I've used it for 10 years, ever since I started the site, but it's nothing but spam these days, so at the very least, until I get caught up, that one is down for the count. In the meantime, I've set up a new mailbox, which I don't even want to put together because I know how quickly it'll be caught by spambots. You'll have to put it together, it's just "mailbox", and this domain - as in sidsfamilies.com. That's my new email address for now.

I'm still having FTP issues, I can't change any files on the website and it's beyond frustrating. I've been with the same host since I set up the site, they've changed names a couple times, but always the same people, but I may have to consider changing hosts. I just dread having to move things and get them working elsewhere, yet again.

I was without a computer for a couple months last fall too as it had to be repaired. The first shop fixed USB ports and the power issue, but fried everything inside the computer. The second place "fixed" all that, but my once fast computer now runs like a turtle. Sometimes it'll take, I kid you not (I've timed it) 20+ minutes to load a single web page. It will just suddenly choke, and of course, only adds to my frustration. *sigh*

I never would have imagined that the little site I started back in 1999 would get so big. It really is beyond my abilities to manage it all by myself. I've even been thinking of enlisting the help of my older, computer savvy kiddos.

:)

I have some personal news too, but I'll post that to another note.]]> Site Updates http://www.sidsfamilies.com/blog/index.php?entry=entry100228-002600 Lydia Alves Sun, 28 Feb 2010 00:26:00 GMT http://www.sidsfamilies.com/blog/index.php?entry=entry091102-184916
So far I have received 64 forms, a smaller turnout than usual but that's likely due to how late everything is this year.

The main Holiday of Angels page is here. If you don't see The Sign Up Form in the list then the form's already been taken down for this year.



]]> Holiday of Angels http://www.sidsfamilies.com/blog/index.php?entry=entry091102-184916 Lydia Alves Mon, 02 Nov 2009 18:49:16 GMT http://www.sidsfamilies.com/blog/index.php?entry=entry091023-225834
Earlier this year, right around Jacob's angel day, the site went down. It had been completely deleted due to an issue over billing. I believed I had paid for the year and had a receipt for it, but for some reason unknown to me they never actually took the money off my card and I never noticed it hadn't gone through. I thought everything was good until renewal time but sometime in the spring they realized it was, in their thinking, "unpaid" and without warning or even the courtesy of a phone call, they simply deleted the entire website. I hadn't cried that hard in a long time. Edward phoned and phoned repeatedly and finally got someone on the phone who said he'd try to help. He was able to run some kind of program to retrieve what he could of the website from old server backups or something, I'm not exactly sure, all I know is he managed to get the babies back up. Edward had explained to him that this wasn't some commercial site, it was a site in memory of babies lost to SIDS. I'm not sure who that fellow was but he deserves major blessings for what he did!

Unfortunately, things didn't work properly, and still don't. Things are missing, lots of things. I think the nursery is intact, but lots of other things aren't. At first I couldn't even login via FTP which prevented me from doing anything for a long time. I tried to update on the blog about it, but it wouldn't post anything. I also had a problem with my computer, I only just got it back yesterday after a very long visit to the repair shop. I checked here and finally the blog is letting me post again. I can use their file manager to update things but still can't use FTP so it's really slow to do anything.

SO.. I'm really late getting the Holiday of Angels up and running and I'm trying to do that at the moment. Slow going because I have to use their file manager thinger, but better than nothing! (Much better! I've seen "nothing" and "nothing" wasn't nice!)

I had one collage finished for 2008 and was still waiting on enough babies to finish the second one when the site went down so I still have that to do, then the 2009 collage too.

I'm insanely far behind with nursery additions. I'm just grateful that the email groups are off-site because those didn't go down when the site did.

So that's a short-ish version update. I'll post again when I have the HOA forms ready to go.]]> Site Updates http://www.sidsfamilies.com/blog/index.php?entry=entry091023-225834 Lydia Alves Fri, 23 Oct 2009 21:58:34 GMT http://www.sidsfamilies.com/blog/index.php?entry=entry090212-005618 page 148 in the nursery
Christopher Matthew Morrow
Theodore Douglas Lee-Staveley]]> Heavens Nursery http://www.sidsfamilies.com/blog/index.php?entry=entry090212-005618 Lydia Alves Thu, 12 Feb 2009 00:56:18 GMT http://www.sidsfamilies.com/blog/index.php?entry=entry090212-000150
I miss you little man, sending kisses to heaven!

mommy]]> the Alves Family http://www.sidsfamilies.com/blog/index.php?entry=entry090212-000150 Lydia Alves Thu, 12 Feb 2009 00:01:50 GMT http://www.sidsfamilies.com/blog/index.php?entry=entry090211-211211
Cooper Culling Campos
Brietta
Graysen Nicole Sousa
Steven Arnold Steven
Myah Brianne Schmidt
Caitlin Bailey Becker
Gabriel Lawrence Plourd
Kaileigh Pearl Joyce
Rachael Victoria Franks
Isaiah John Kiger
Brian Justin Ortiz
Tania R'nay Messina
Nancy Ann Ridaught
Scarlet Ebony Crouch
Niyelli Audrianna Yanez Nuevo
Mary Cooper Pitts
Alyssa Denise Davis
Yahira Jesenia Silva
Hayden Lynn Spivey
Lindy Aiyana Seward
Olivia Hope
Joseph Michael Morrison
]]> Heavens Nursery http://www.sidsfamilies.com/blog/index.php?entry=entry090211-211211 Lydia Alves Wed, 11 Feb 2009 21:12:11 GMT http://www.sidsfamilies.com/blog/index.php?entry=entry090107-181654
Jaizon Maraad Raymond Boyd
Dauntay Evans
Tristan Ronald Franz Blum
Johnathan Richard Miller
Isaiah Cole Jellema
Christian Dominick Berryhill
Ayden Levi Wilder
Triston Chance Reynolds
]]> Heavens Nursery http://www.sidsfamilies.com/blog/index.php?entry=entry090107-181654 Lydia Alves Wed, 07 Jan 2009 18:16:54 GMT http://www.sidsfamilies.com/blog/index.php?entry=entry090105-133105
You can join the mailing list from the main page here.

Announcements and reminders and such will be sent out to those subscribed, typically you'll only receive mail from the list during the active months - September through December.

Also new for the upcoming Holiday of Angels, I will be denying participation to those who have either not reported sending a gift, or not signed the guestbook when they have received a gift. I hate to have to do it, but it's just not fair that people sign up year after year, a gift is sent out to them and either they don't send one out themselves, or they don't thank the person on the guestbook for sending them a gift. Hopefully this will make next year's Holiday of Angels run much smoother! ]]> Holiday of Angels http://www.sidsfamilies.com/blog/index.php?entry=entry090105-133105 Lydia Alves Mon, 05 Jan 2009 13:31:05 GMT http://www.sidsfamilies.com/blog/index.php?entry=entry081226-140705
I dread the coming new year somewhat... this year marks 10 since Jacob was with us and it's just absolutely heartbreaking to me that it's been 10 years since I last held my son in my arms.

I do hope that each of you have the best holidays possible.
:hug:]]> the Alves Family http://www.sidsfamilies.com/blog/index.php?entry=entry081226-140705 Lydia Alves Fri, 26 Dec 2008 14:07:05 GMT http://www.sidsfamilies.com/blog/index.php?entry=entry081221-132242 Heavens Nursery http://www.sidsfamilies.com/blog/index.php?entry=entry081221-132242 Lydia Alves Sun, 21 Dec 2008 13:22:42 GMT http://www.sidsfamilies.com/blog/index.php?entry=entry081220-154618 Heavens Nursery http://www.sidsfamilies.com/blog/index.php?entry=entry081220-154618 Lydia Alves Sat, 20 Dec 2008 15:46:18 GMT http://www.sidsfamilies.com/blog/index.php?entry=entry081219-160116 Madisen Hope Hackett
John Daniel Fry

New page added for:
Aden Rick Johnson

Story changed for:
Alexander Caelan Sowder]]> Heavens Nursery http://www.sidsfamilies.com/blog/index.php?entry=entry081219-160116 Lydia Alves Fri, 19 Dec 2008 16:01:16 GMT http://www.sidsfamilies.com/blog/index.php?entry=entry081218-223939
Grady Louis Yatsko
Joel Benjamin Taylor
James Walter Lee Robinson

]]> Heavens Nursery http://www.sidsfamilies.com/blog/index.php?entry=entry081218-223939 Lydia Alves Thu, 18 Dec 2008 22:39:39 GMT http://www.sidsfamilies.com/blog/index.php?entry=entry081218-130406 Every life has a story wins for the General designs with 53% - 74 votes

I simply wish for one more day won for this year's Personal shirts with 56% - 77 votes

I have one collage finished for 2008 and a little over 60 photos already for the second collage. If you would like to submit your SIDS baby's photo to be included in the collage, please visit the T-Shirt section of the site and follow the directions there. Thanks!

To receive notification of when to participate in the polls, just join the T-Shirt mailing list if you haven't already. Then you'll be able to take part in deciding what goes on the t-shirts each year too.]]> T-Shirts http://www.sidsfamilies.com/blog/index.php?entry=entry081218-130406 Lydia Alves Thu, 18 Dec 2008 13:04:06 GMT http://www.sidsfamilies.com/blog/index.php?entry=entry081216-104229 Pilet Rhett Hanson
Fletcher Leonard DeSchepper]]> Heavens Nursery http://www.sidsfamilies.com/blog/index.php?entry=entry081216-104229 Lydia Alves Tue, 16 Dec 2008 10:42:29 GMT http://www.sidsfamilies.com/blog/index.php?entry=entry081212-173025 main page for the Holiday of Angels and leave a note. Easy peasy
:yes:


To those who would like to join in a chat tonight just send me a message on Yahoo Messenger - my ID is babyjacobsmommy. I'll invite all I can and hopefully the chat room won't blow up from all our excitement

:)


:hug:
BIG HUGS to everybody still waiting for their gift to arrive!
]]> Holiday of Angels http://www.sidsfamilies.com/blog/index.php?entry=entry081212-173025 Lydia Alves Fri, 12 Dec 2008 17:30:25 GMT http://www.sidsfamilies.com/blog/index.php?entry=entry081212-102207
John Robert Rybolt V
Ryan Patrick Peter Lawrence
Alexzandrea Faith Munoz
Gabriel Christian
Gaden Allen Klein
Jayden Shawn Nowaczyk
Jaylynn Elaine Zaring
Aaron Gunner Craig
Isaias Evan Couto
Aleksandra Sophia
Jada Leaster
Evan David Clark]]> Heavens Nursery http://www.sidsfamilies.com/blog/index.php?entry=entry081212-102207 Lydia Alves Fri, 12 Dec 2008 10:22:07 GMT http://www.sidsfamilies.com/blog/index.php?entry=entry081211-110137 Isaac Scot Hemmestad
Austin Frank Clough

Nursery page added for:
Joseph Anthony Jennerich]]> Heavens Nursery http://www.sidsfamilies.com/blog/index.php?entry=entry081211-110137 Lydia Alves Thu, 11 Dec 2008 11:01:37 GMT http://www.sidsfamilies.com/blog/index.php?entry=entry081210-113326
Isaac Hemmestad
Julian Jamaal Alexander
Mason Robert Neu
Jonathan Alexander Tillman
Joseph Michael Milano
Benjamin Matthew Phillips
Timothy Jayceon Covington
Haley Elizabeth Johnson
Robert Richard Dale Hope
Kairi
Aaron Elijah
Olivia Rae Siladie
Carleen Elizabeth Laubinger
]]> Heavens Nursery http://www.sidsfamilies.com/blog/index.php?entry=entry081210-113326 Lydia Alves Wed, 10 Dec 2008 11:33:26 GMT