Need advice!

[adamsmom]

Hello! I'm sorry it has taken me so long to respond. I have had a busy day and barely got to glance through the new responses. I saw some really good info and advice. I will reread them and respond properly in the morning when I am not so tired. I am just wearing myself out right now. I did get Adam's care page started and a few pictures posted so I hope you guys will check it out. It is at carepages.com under "Adamsheart". Later...

 

[gijanet]

Adam's mom............

Adam's mom............

Go to bed.............right now!!!! I'm the only bonafide insomniac mom on here............one is enough! Hugs. will post more in a minute. Lyn, have you got my number or what? Love ya. J. Hey, and when do we get that update on the graduation ceremony? I KNOW you took pics!

 

[Lynlw]

Go to bed.............right now!!!! I'm the only bonafide insomniac mom on here............one is enough! Hugs. will post more in a minute. Lyn, have you got my number or what? Love ya. J. Hey, and when do we get that update on the graduation ceremony? I KNOW you took pics!

Ummm..I thought I might wait until after he graduates on the 19th lol however tonight was the prom so i'll email you pics he was definately 'stylin', love ya lyn ps notice i don't sleep day or nights (well an hour here and there) 5 out of 7 days

 

[gijanet]

Okay, Mrs. WAY!

Okay, Mrs. WAY!

It would be really nice to have your first name.......... But I know how it is........at PDHeart, I am not Janet, I am Katie's mom.............anyway.......

Before I forget.............a portable DVD player! If you don't have one, it will be well worth the money spent.


Now, breathe in, breathe out, breathe in, breathe out...................sigh! I know exactly where you are right now..........and it's not a good place to be. You are a basketcase. Just ask this group,that is exactly where I was last summer. THIS group got me through........even more so than my ped heart groups because so few of them had been through a valve replacement.

Make a list of what all needs to be done before June 14th (my dear departed brother's birthday, BTW, so I know you have at least one guardian angel watching over you.........at least I hope that's where he is.......... ) Check off the list as you reach your goals. First, do do the commission checks as those folks might get upset. Anything that can wait until July or August, don't bother to put on the list.

The day before surgery does seem late to be previewing the facilities, but that has advantages, too. Not too much time for Adam to worry. Marguerite is right.............try and not show how stressed you are.........next to impossible I know, but try anyway. Take tylenol PM or something if you need to to get to sleep............yes, I'm a fine one to talk.

You are not going to believe this, but I teach in H-E-B. I taught at LD Bell for sixteen years before switching to KEYS six years ago (the at-risk school). What a small world! And we love Dr. Lai. Dr. Wienecke was our beloved PC before he upped and moved to South Carolina last year. We see Roten now...............she's the buxom blonde...............which has two strikes against her in my book...........if you catch my drift! Don does most of Katie's PC appointments now since he retired from Uncle Sam, but I never learn anything about Katie's well-being..............I think Don just sits through the appointments and drools! Dr. Lai, though, was a gem when Katie was born. (We were in the hospital 8 weeks, so we met most of the cards on staff.) He would patiently try and explain her numerous defects to me and even draw pictures for me, since none of the heart brochures ever had Katie's combination of defects listed. Such a sweetheart.

Anyway, do try and get your mandatory stuff done, so y'all can go spend some quality time this weekend and early next week............maybe a family camping trip or a trip to the beach or even a day at Six Flags............something that does not involve brain activity and y'all can just enjoy being together. Make this a priority!!!

When y'all are ready, there is a neat peds heart group here locally called Heart-to-Heart. They are officially affiliated with Dallas Children's Medical Center, but have kindly adopted many of us outsiders. They are a neat bunch of folks and Adam might enjoy meeting other kids who have had heart surgery as well. THe president's son has had a heart transplant.

Okay, I have rambled on enough. My thoughts are with you. Do try and get some rest.................the hospital is hell, pure and simple. At least you live close enough to commute, but do check out the sleeping arrangements as Lyn suggested. Many hugs. Janet

 

[gijanet]

NOt to hijack this thread............

NOt to hijack this thread............

Ummm..I thought I might wait until after he graduates on the 19th lol however tonight was the prom so i'll email you pics he was definately 'stylin', love ya lyn ps notice i don't sleep day or nights (well an hour here and there) 5 out of 7 days

but you are kidding, Lyn. Most of our high school graduations were last weekend..............ours was Friday night. YOu should have seen it..................moms graduating with their kids in the audience...............sigh! I AM at the at-risk school, after all. Anyway, YES! I do want to see those pics. Are they on Justin's page? I always forget to check it since I don't get that friendly little reminder like carepages does that it's updated. You have my love. J. P.S. YOU are now officially old, but since we are the same age, I'll overlook it! heehee!

 

[adamsmom]

Okay, I finally have the chance to sit down here again. I see there are a few others having surgery this week and all of a sudden that seems like what matters right now. Praying and hoping they make it all right. I am amazed that it is so emotional to read the updates. Doubletroublex2- whenCaleb had his- I was glued to the computer- wanting to know everything that was happening and how he was doing. This group is unique in that you do quickly start caring about what the others are going through, and praying for them and getting so personally involved. I can really feel how genuine the care and concern is from all you guys and it is awesome. Now I'm getting emotional---
Janet- my name is Jancy and thanks for being that personal. It's neat that you also know Dr. Lai. We really loved him also- and we just might switch back to him after this is all behind us. And you teach at HEB! How ironic is that. I want to research what exactly the key school really is- I am not familiar with it. Your sweet Katie has really been through a lot. I think I need to look around and count my blessings. Up to now Adam has been fortunate, and I expect this surgery will go smoothly and I will still be able to say that. My heart has just broken for Noah's mom! Did you see that Video?
Marguerite- I guess you guys can read me- I am getting too frazzled, and need to get it under control. I'm going to take your advice. Thank you so much for posting that link to help with sizing the photos. It helped so much. Now I need to figure out how to post one here with my name and how to put the url at the bottom like you guys do. (ha) I thought I was pretty computer literate, but this is actually my first experience in a chat room. I guess I have a lot to learn.
Cat Woman- Thank you for your support. I actually go to Aledo once a month to make a collection at the little convenience store just past the tracks- I think it's called Midway. Small world, huh? Maybe we should meet for lunch some day when I'm there? It's a neat little town. I'm amazed at how it's growing.
Caleb's mom- I did share Caleb's advice with Adam. How sweet! I had shown Caleb's web site to Adam and the two of us held hands and prayed for him at the exact time his surgery was happening. Adam has stayed updated on Caleb's recovery and knows who he is. Neat, huh?
So much advice- more things to add to my list. Perry- earplugs- I like that one! Lyn-I have to get Matty's heart and find out more about sleeping arrangements and figure out music, and buy pj's and maybe all these little things will keep me on track and keep me moving forward with a purpose. I have another week and a half before it is Adam's turn. Right now, I want to put my emotions and prayers toward the two surgeries happening this week!
Thank you guys all so much.

 

[gijanet]

Hi, me again.........

Hi, me again.........

Matty's Heart is about a three year old little boy undergoing open heart surgery. It is probably a bit young for Adam, but the concepts are all there and I honestly don't know of another one that would prep him as well. It's available at www.kidswithheart.org Go to the bookstore section. It's on sale right now for 9.95 with a free heart cath coloring book.......again, probably too young for Adam. Call and talk to Michelle the president of kidswithheart. She may be able to suggest another book. Anyway, I piddled around last year or hell, maybe it was Katie's third surgery, but didn't order until the last minute. Michelle got it to me in two days.............course I had to pay for the extra shipping. I would give you ours but it has an area in the back to record all of the firsts post-op and I've recorded all of Katie's stuff there...........well, some of her firsts anyway.............first off the vent, etc. You only need a couple of days to go through it, so if you order tomorrow by phone, you could probably save on shipping.

And Katie sweet? Ha! She's a little she-devil in disguise............but she's had to be and she keeps me in stitches. Dunno if it's from all the time on the pump..........or the narcotics..............but she has the most vivid imagination of any kid I know.............and I love her to de............nope, not going there!

May you never have to know KEYS firsthand..............and may Adam never have to go there.............

Okay, I'm serious about making that list.
Write down your packing list and your to-do list. Calling the hospital will knock several of your questions off your list. Don't wait until the visit since it is only the day before. You don't want to have to make adjustments at that point. Also, there is a vrmember who posted about a bad week under "small talk." She had surgery a couple of years ago at Medical City. PM her and tell her you would like to pick her brain. I'm serious about you clearing your schedule for this weekend or next week so y'all can spend some family quality time together. Even for a day or two...........Six Flags, or Mineral Wells STate Park for the day...........go canoeing or kayaking there............don't opt for the paddle boats unless you are in really great shape. We get pooped out halfway across the lake. Maybe even camp for a couple of days, but they get really booked up fast, so check in advance. Weekdays are probably better.

Okay, I'm rambling and need to get back to studying................I have a huge test I have to take next Saturday...............ugh!

Thinking of you and sending many hugs. Saving the prayers for next week. J.

 

[Christine]

Hi Adamsmom - I just wanted to qive a quick hello.. Janet mentioned to me in a unrelated thread that your son will be going to Medical City.. I had my AVR done there 4 years ago this week.. I didn't have Dr. Ryan, but couldn't have picked a better hospital.. everyone there was very attentive and caring.. mine was not planned, kind of an emergency by the time I was diagnosed.. but the entire team of Drs, nurses and lab techs (the midnite vampires as I call them) were wonderful.. as scared as I was, their bedside manner was excelent.. I can't say enough about Medical City.. please know your family (especially your son) will be in my thoughts and prayers these coming days.

Janet - to go off topic for a minute to answer your question.. (which i forgot in the other thread).. i'm from PA, lived in Dallas for 12 years before moving back in 2003.. I still have my accent to a degree and my "southern" ways, but slowly losing both.. bummer.. but when I talk to someone in the south.. my accent comes right back out.. and of course I get the looks from around my cube when it does.. especially when I say things like "fixin to".

Chris

 

[adamsmom]

Hello Christine and Janet. I am glad to hear that the hospital is a good one,Christine. Thanks for the info and the prayers. I guess I was expecting it to be somewhat superior, and would have been disappointed to hear otherwise. I did call and found out they have 4 computers in the surgical waiting area, so we will be able to update the care page. They also told me no to the teeth cleaning. Said it was a risk to do it this close to surgery. I should have thought of this a month ago. I am very proud of myself because I printed business cards with an invitation to his carepage sight and began handing them out to the peripheral friends and family today. Seems to be a good idea. I was told we could not stay with Adam overnight when he was in ICU. Probably the first three days, and after that when he gets moved into a regular room, we can stay with him. I have made reservations at a nearby motel for those first three days, but honestly I don't really intend to leave the hospital. I can sleep in the waiting area. I can't imagine leaving while he's still in ICU. I will let my husband and parents use the room. My lists are growing Janet. I am going to call tomorrow and see if I can get a couple of books in time. I wish you could talk to my husband. He doesn't want to plan a family thing the weekend before because we have so much to arrange to leave our business situation for a week minimum. Just part of being self-employed, but he thinks a trip to the coast later in the summer when he is recuperating would be better. I don't know if the long drive would be too difficult? Anyway- I am working triple this week trying to clear myself so I can do the zoo or Six Flags or something myself in advance. I realize you are an English teacher Janet because I looked you up on the HEB website. So guess I'd better go get this spell checked before I submit. (ha) Thanks so much.

 

[gijanet]

Oh, you wicked woman..............

Oh, you wicked woman..............

I looked you up on the HEB website. So guess I'd better go get this spell checked before I submit. (ha) Thanks so much.

You must have wanted a pic for your dartboard. I don't think I have updated that page in FOREVER!!! and that picture is not really me............I'm really much younger and prettier than that! Haha! And you would never guessed I teach English from MY posts..........sheesh! If I worried about that, I would never respond to anyone.............

Okay, tell your hubby that later is fine, but he can still arrange to have one day or two free. Jancy, things are going to go fine. I just know it in my heart, but put it to your husband this way - definitely not within Adam's earshot. If, God forbid, things don't go okay, could he live with himself if he doesn't take that day or two to spend with Adam? He will never forgive himself. I hate to even put that in print; I KNOW things will be okay. They will be. Trust me.

Doublecheck the hospital. Can no one stay by Adam in ICU or can no one sleep with Adam? At UofM, we can't sleep there, but one of us can stay there in a chair bedside. When we get to the floor, we can sleep in there. Regardless, the hotel room is still a good idea as someone can be in there sleeping so you can do shifts.

I think if y'all planned for late July for the coast, you'd be fine. Kids seem to recuperate faster than the adults do.

Okay, gonna go check that carepage. Many hugs. Janet

 

[doubletroublex2]

kids recover quick!!!

kids recover quick!!!

My title says it all! Caleb is so full of energey I can't keep him down. He is running, climbing, swinging, raking, and begging to go on vacation! His is only three weeks out of surgery (12 hours knocked out and 9 on the pump!) for most adults they would still be feeling really bad. Did I mention that the only reason he takes Tylenol is for headaches? No pain meds since day 6 and that was because we wanted him to sleep good (didn't work for sleeping)! The only thing that is the smallest bit hard is the blood draws, this might be the only thing that could hold up a vacation and that may not be an issue. We are only being tested once a week. As for riding in the car Caleb is doing great this weekend we were in the car for about 6 hours and no complaining about pain, just about it taking sooooooo long! I thought we had Donkey in the back seat!

Please let Adam know that we are praying for him and that it will be done and he will be feeling better very soon.

Jamie
PS We have had to hide his bike and scooter from him to keep him off!

 

[Lynlw]

I asked michelle

I asked michelle

It's on sale right now for 9.95 with a free heart cath coloring book.......again, probably too young for Adam. Call and talk to Michelle the president of kidswithheart. She may be able to suggest another book.

a few days ago and she said that it was the best one and that some parents gave it to the grandparents to read ) we think so much alike, lol lyn

 

[adamsmom]

Janet you are so funny. Quite a hoot! Personality plus- must be where your daughter got it from! At the hospital, we can stay with him in ICU, it is just not set up for sleeping. Which is okay, as long as I can be there, I will be. Gosh I am ready to get this over with.
Doubletroublex2- Incredible! It does seem like Caleb just had his surgery. To think he is doing so well so soon is encouraging. It was that way with Adam's ASD surgery, but he was only eighteen months old, and our surgeon pointed out that this surgery is much more involved and serious than just a simple ASD. Ha! I didn't know any open heart surgery could be considered simple, but he made me think the two were not comparable. Have you noticed any pumphead effect with Caleb from being on the machine so long? From what I've read, this is a common aftereffect. Also, were you ever given an explanation to his leg pain. Was it circulation related? I hope Adam does not have to go thru the blood draws. Poor Caleb. Adam will not be on blood thinners, I don't think- so maybe he will be spared that part. I am so glad to hear how fast Caleb has bounced back.
Lynlw- Thanks for the helpful advice. I did not get to call her yesterday because I was out of the house all day trying to double up on my work so next week will be clear. I still need to do sales tax which is due on the 20th. I figure I should get that out of the way so I will not have a deadline hanging over me immediately. When that is done, I can focus on packing, finding button up pjs, every other little thing I can think of. I think my mother is going to come Monday and we're going to do a day at the zoo. Should be fun. Adam hasn't been since he was young, and these days, he wants to be an animal expert and a forest ranger when he grows up, so he should enjoy it a lot. My hubby hasn't read all of your advice, so he has no idea. He's like the ostrich sticking his head in the sand trying to pretend this isn't happening. He frustrates me and I frustrate him with our opposite ways of dealing with things. I guess that is why this forum is wonderful. I feel like you guys listen and validate my concerns. Thanks so much- it is a trememdous help!