RollersInVegas

Our day was CRAZY yesterday (really...would expect anything less of us??)! We did make it to Dr. Mayman's office. The heart looks good, there's no fluid around it, just a little leak around the conduit that we'll keep our eye on. He said that we're headed back to Stanford for tune-ups when the leak gets too big or the conduit narrows. (hopefully...that won't be for a while!). He did notice how fast Isaac was breathing. I didn't fully understand how much distress his lungs were now under. But, Dr. Mayman said that it wouldn't surprise him if we had a couple of hospital stays this winter due to his respiratory status (not his heart). So...I made an appointment to see the pulmonologist...and can't get in until Jan. 2nd. And that means...we'll have to continue to be hermits...no shopping excursions for me for a while...and good thing there's vons.com!!! We did get out flu shot yesterday...which didn't make his attitude any better...He's still the crankiest little guy. He's smiling and giggling one minute, then looks around and starts crying. He's still on the heavy meds and steroids (all getting tapered...he should be off of them by the weekend).
Christy was here for a few days, with her 5year old, 3 year old, and 3 week old. That Luke (3 year old) threw golf clubs, golf balls, rocks, and money in the pool. Then, he turned some nozel on the pool pump, so that when the pump turned on this morning...water was shooting all across the backyard! (They better go ahead and build a juvenile detention center near him...then his mom won't have far to travel when she has to go see him!!! (oh...he's a stinker!)Kenny (the 5 year old)--which these are all my crazy nephews--he loved playing with Eli....and the newest niece in our family...was just a tiny little cutie pie! (Can't wait to see how she turns out with her two crazy brothers!)
Isaac has a hard time going to sleep (it's the methadone)...but, finally, after 5 hours of non-stop fussyness....he's asleep. I'll try to upload pics soon....he just won't give me a minute.

We made it home!!!
Safe and sound! He slept the entire flight (but, it was only an hour flight). No bags were lost, no tears were shed, and I'm ready to go to sleep in my OWN bed!
Goodnight guys!
Thanks for checking on us.
We have an appointment tomorrow with our card, Dr. Mayman. I'll post after we visit with him (so, a night post).

WE MADE IT!!! We're at the RMH and Isaac has been SOUND asleep for about 2 hours now. He's sleeping so good, that I keep going over to make sure he's breathing! My little crab muffin was just tired.
Before checking out of our suite at the hospital (ha ha)...we had to get all of our prescriptions filled...all 10 of them!!! Which, after insurance, was a wonderful $200!! Then, we had to have a portable nebulizer (in case we needed to give a breathing treatment at the airport or somewhere on the go) and wouldn't you know that's not a covered item on our insurance! So...there's another $300...and it wasn't even noon yet! Wait until tomorrow when we settle up with RMH (which, thank goodness, won't be too much) and pay for the rental car...and we bought a last minute ticket back to Vegas (which on Southwest isn't too bad)....GEEZ LOUISE...It's a good thing Joe works hard for us!!! I told the pharmacist that I was wrapping up Isaac's medicine bottles for him for christmas!
Oh...I can't wait to see my little stinker boys! They say they need haircuts...I love it when they let their hair get long...I always wanted little tan, long haired, surfer boys. Now, they're tan, shaggy haired, but no place to surf. Maybe one day we'll end up on the coast again (east or west)...but, on the ocean would be NICE!
So...we fly out tomorrow about 3:00 and tomorrow night I'll be eating dinner on my tv tray in front of my big tv watching my soap opera that I've missed for weeks (my guilty pleasure...don't tell anyone!).

Thanks again for everyone that helped us get through this incredible journey! From all the moms that helped take my boys to school (Debbie, Kim, Toni, Wendy, MaryAnn, Janice, and any other mom that got a call to help), my mom who's watching our boys now, Joe's mom who had them last surgery, my sisters for calling and emailing and sending goodies, my sister-in-law for always leaving us comments (instead of my brother who can't seem to find time to call...thanks Abby!), Thanks to all my HEART MAMAS....who hold my hand and give me advice and pep talks, thanks for all the members of our ward, other wards, and everyone who prayed and fasted for us and Isaac...we felt your prayers and hugs. I could list a million things that we're thankful for this year...but, mostly I'm thankful for my eternal family and my adoring husband (who, yes, at the moment...is still on my nerves)....but, I couldn't imagine taking this journey without him holding my hand, leading our family, and being the glue that holds us together (well..he's like the glue stick...I'm more like the super-glue...but, he's still glue!).
(I just crack myself up sometimes!)

I'm must go now and pack....YEAH RIGHT! We have enough stuff (JUNK) to fill 10 suitcases and only have 3...I'm not sure how that's going to happen yet!!

WOW...we went to the cath lab this morning and he had to be put to sleep to get the broviac line taken out. He was a CHAMP!!! No problems (thanks to the wonderful team that took care of him!)...and he's snoozing as we speak!

We're getting discharged at 3:00 TODAY...oh YES!! So, we'll probably sleep tonight and head back to Vegas tomorrow morning. I can' believe it!!!

Joe took the night shift again last night...so, he's at the house snoozing. I want to call and wake him up and tell him the good news...but, I'll give him a little longer to sleep.

We'll post again tonight to confirm that we made it out.
I'm SO EXCITED!!!

The wireless is back up!!! I can shop now!!! Yippie!!

Isaac is still a crab muffin. He can't sleep...he doesn't like anyone touching him...he's just miserable. But, we might be going home tomorrow...and it will be all worth it!! He got his pacer wires taken out today, the stitches from his chest tubes taken out, and he's scheduled to get his RSV shot today (boy...will that make him mad!). They are trying to get us scheduled for the cath lab tomorrow morning...and then we can be out of here by late afternoon!!! I'm so excited I can't stand it!!!

So...have I told you that my snazzy new phone isn't working? Joe's at the apple store again trying to get it working. We had vegetable lasagna for lunch..yuck! (I'm sure that there's good vegetable lasagna out there somewhere...but, trust me...it isn't here!)

Isaac is beckoning me...so, adios for now!

Joe's pulling night shift again (poor nurse). Isaac does not sleep. I think he's teething of top of all his other pains and woes. Poor little guy! He tried to put his whole fist in his mouth tonight...cracks me up!! Joe brought in Mexican food tonight for dinner...what a SWEET husband I have. We're still looking at a Tuesday discharge (Wednesday morning at the latest). We're waiting for an opening in the cath lab. Isaac has a central line in place still that has to be surgically removed...and it has to be done in the cath lab. Maybe we'll luck out and they will have a cancellation tomorrow...oh...that would be glorious!!! I can TOTALLY see the light at the end of this crazy tunnel! We're almost home! I've never wanted to go back to Las Vegas so much in my life!!!
Back to Isaac. Still just a cranky fellow. (I seem to say that alot). But, he is. We're allowed to walk around the hospital now. So, I take him on a nice wagon ride...and he cries the whole time. I hold him, he cries...I put him in the bouncy seat....he cries. I put him back in bed...he kicks his feet...and cries. It's not a "I'm hurting really bad cry"..it's a whiny, "I'm just feeling icky" cry. And....really...if I had all that done to me...I'd be a little whiny too. So, I just pat his bum and talk to him until he finally decides he's finished. (which hasn't happened yet...but, Joe has to hear it all now!!!)
Notice in the pics how he puts his hand on his forehead...as if to say, "it's just tough being me!"...

The wireless is still down in the hospital...good thing I have my snazzy phone. Isaac is still a cranky bug...but, when I munch on his feet or neck ...he will start laughing! He NEVER laughed before. I almost wanted to cry! Dr. Mayman was right...he is going to turn into a totally different baby! Joe is at rmh getting some much needed rest. I can't wait to get home!! I'll post a longer post tonight when I can type on the computer....but, you have the basics...isaac is awesome!

I'm SUCH a dork!! I'm at the RMH (Joe's pulling night shift again) and I have internet access...but, I left the camera in the room! Well...I know you guys are waiting for pictures...but, I'm not going back. We'll try again tomorrow!
As for Mr. Isaac....he's off oxygen (again). Satting in the upper 90's (like a champ!). He's off all of his iv meds...everything he takes now is through his g-tube...which is: (drum roll please....) prevacid, lasix, aldactone, methadone, ativan, potassium (which will soon be stopped), baclofen, prednisone, some other type of phosphorus potassium something, and two different breathing treatments every 6 hours. WHOOOO! They said that it could take a couple of weeks to get him off the narcotics and months to get off the breathing treatments. It appears that the lungs take quite a beating during the unifocalization surgeries and need help staying puffy! This is all nothing that we can't handle....BRING IT ON! Isaac's SLOWLY gaining back his weight. Not yet up to 14 pounds yet, but we're working on it. He's been on continuous feeds...where we give him 35cc's every hour. We're doing to start compressing that tonight where we will give him 70cc's over 30 minutes every 2 hours and then tomorrow, we'll give him 105 over 45 minutes every 3 hours until we get to the feeding schedule that we were on before we got here...150cc's over 1hour every 4 hours. (I can't believe I got all of that straight!). He's still VERY cranky. It's the drug withdrawals and the steroids that he's on...he better be glad that I love him and think he's cute! I try holding him each day and he won't let me...he just screams louder until I put him back in the bed snuggled up with his stuffed animals. (What a stinker!). His hands don't stink anymore...if you were wondering. But, boy...I can't wait to give him a bath. I'm sure that he's got things growing in all kinds of places! We changed his mickey button to his new size...except, now that he's lost weight...the button doens't fit very well...there's a little leakage around it. So, Joe and I are changing the dressings alot and the wound nurse will be by on Monday to see if he needs a different size. It's just a little raw around the edges...nothing like it was last week. All in all...he's doing good. They are trying to get us discharged on Tuesday...and I can't wait!!!
See you guys then!!
(I'll try to put on my thinking cap and remember the camera tomorrow...but, you know how my mind works lately...)

My sweet Joseph took the night shift with Isaac...I don't think that either one of them got much sleep! The hospital wireless is still down. Urrgghhh. I have Xmas shopping to do!
Isaac seems to be doing really well. I'm trying to get off oxygen...then they might let us sleep at rmh at night and spend our days here. Wouldn't that be a treat! I'm sure its wishful thinking....but, I'm still going to ask. He has been fever free for three days now!!! And he spends his days watching Yo Gabba Gabba.. What can you do?? I ate some fabulous pie last night Cindy...joe didn't tell me there were cookies until he tried them first! (I'm never going to make it into my skinny jeans!)
I'll bring the computer to rmh tonight so I can upload some pics....he looks SO much better.

We changed rooms again today. We are now in a room with only one other baby. Our plan is to just chill over the weekend with hopes of going home early next week. We did an echo today and lung profusion scan....I think the results from both are fine (or at least I haven't heard otherwise). Isaac was off oxygen for a little while today....but, now he's back on. We will have the weekend to get him off! Thanks CIndy for the pumpkin pie....I intend on eating it all by myself! The wireless in the hospital is out again and I'm typing on my snazzy phone.... But it just takes SO long...so, I'll type more tomorrow.

Happy Thanksgiving!!!
I forgot to tell everyone that Isaac was weighed yesterday and weighs 13.9 pounds. He's lost 3 pounds!!! (or did I tell you??) I can't remember...but, he does like tiny now. No more big head! He's sleeping really good today, not as cranky as he has been for the last few days. We have an echo scheduled for tomorrow and a lung profusion scan for Monday (I hope)...and all else staying the same...we could be out of here early next week. He's still on a lot of meds that need to be tapered more, his inflammed lungs need to settle down, and the fever needs to stay away!
Enjoy the pic of our Thanksgiving feast. It's almost comical...but, I am SO GLAD that we have this to eat. (Most of this town is closed down...we're not in VEGAS anymore!)
Isaac is only on 1/8 litre of oxygen!!! He'll be off by tonight or tomorrow! It's SO AMAZING to be looking at such a pink little baby! No more blue lips! It's been fun seeing old faces again...but, it will be nice to only come back for "tune ups"!!!

I completely fell down on the JOB!! We got moved upstairs to the IICU room on 3west!!! They said that we could still be here for a week...but, we're getting closer to the door each day! His fever hasn't returned yet today..but, they did decide to change his antibiotics to make sure that he wasn't fighting an infection. He's still a bit cranky...the drugs...he'd like more. The occupational therapist came by to play with him this morning...and I took the cutest picture of him sitting up (with assistance). (I know...just teasing you about the picture and not posting it yet).
He's doing good. He's sleeping right now and I'm SO GLAD to be in this room. Joe has already landed and I'm sure he's fighting his way to the rental car lot.
Eli and I had the cutest conversation last night. He asked me if Isaac's heart was all fixed....and I said, "Yes...it is all fixed." Then, he asked again, "Are you sure?? His heart is really fixed?" And again, I said, "Yes...his heart is all fixed." Then, he said, "Good...now I can stop washing my hands!" I laughed so hard and then had to explain to him that we still had to wash our hands to make sure that he doesn't get any kind of other "sick". How cute was that???
Joe was able to go to Eli's Thanksgiving Day program in his class this morning. I'm so glad. They video taped it for me...I can't wait to see it!!

On a completely other note...I haven't done any of Christmas shopping yet. And, if there are talks of us being here another week...YIKES...looks like it will all be done on toysrus.com!! (thank goodness for free shipping!)

I held him...and then I put him back. He was feeling really warm to me and was just squirmy and fussy. So, we checked his bum temp (even though we just checked the armpit temp)....and he has another fever. urghhhh! So, Mr. Cranky-pants fussed for a while until he finally dosed off. The fever could be from the drug withdrawals (as could the cranky-pants we was wearing today) or something else could be brewing. So, we gave him tylenol, his scheduled dose of ativan, and sent a culture of his broviac line (the last line in place) to the lab. I hope it's just the drugs causing the fever! So...now, he's snoozing (in the bed) and our door is closed...so, he'll get a good nap in. They should start up his feeds later tonight. But, all of his blood gases look good and I think this tube is staying out!!! YIPPIE!!!

The vent is out. Right now he is on two liters of oxygen and looking good. He still sounds really junky, but he will be able to cough now. So, now I'm just looking for a rocking chair so I can snuggle him.

We just pulled Isaac's last chest tube. Now...we wait for the pain meds to wear off and we can pull the vent out. He was very alert and awake this morning....so, it looks like a good day! I will post again when the vent is out.

We decided to let Icky sleep for the night. (although he has to have all of his dressings changed...and he can't stand for anyone to touch him right now). Our plan is to try to extabate about 7am (before they start rounds--so, maybe 7:30 (because shift change is at 7). So, I'm trying to get into bed, get some sleep, so I'm out the door and ready to walk in at 7:30!!
The day that I thought couldn't get much worse, did...I walked out to catch the van that shuttles you to RMH. The minute I walked out the door and headed toward the van...she started it up and drove off. (I guess I was suppose to walk because I had four oreos for dinner). Then...when I thought this crazy day was over and nothing else could phase me...I look in the mirror. I have arm flap. I don't know where it came from or how long it's been there. I know this is a right of passage to womanhood...but, I'm not ready yet. I mean...I could fly us all back to Vegas with the way they were flapping!
I talked to the big boys tonight. Boy, do I miss them! (Thanks again to all the mamas that help carpool them to school...I'll be back soon to pick up the slack!) Chris is doing so good in school...I couldn't be prouder. And Eli recited the cutest Thanksgiving poem.
I will definately post in the morning after we extabate. Even if it's only a short one...just so you know how he did!

Well...Isaac decided that he didn't really like the plan that we made for him today. his central line that needed to be rewired first...decided it would clot and needed to be pulled out. So...no big deal...we just put another one in..Right?? Well...In the case of Mr. Isaac...it turned into an almost 5 hour ordeal!!! His poor little armpit is SO sore...but, one was finally placed. This central line takes an accurate blood pressure reading that is need in order to pull out the right arterial line. So, once the armpit line was placed, the RA line came out. Then, the armpit line decided that it was ready to stop working. But, we did get the RA line out with a reading first. SO YIPPIE...one thing is checked off our list. It's kind of up in the air if we'll extabate tonight...look at the time...it's getting a little late and he's been drugged up all day and hasn't had much real rest (fighting with us while in a drug induced sleep in not really sleep). But, I was glad that I was standing with him rubbing his little melon (even if he'll never remember it).
I'll post later tonight if we have any changes...but, it's ok if we can't try until morning.

Oh....do we have a busy day planned. First, one of Isaac's arterial lines are not drawing back (allowing them to pull blood)...so, they are going to come in to rewire it. Then, we will have the right arterial one pulled. After some time, we will then maybe pull the chest tube and then go for the vent. I could be rocking my baby to sleep tonight!!! Although, he doesn't like to be rocked....I will anyway...because I need to! I will keep you updated as the hurdles are passed.

Ahhh....Sunday...and it was a day of rest. I was a bit surprised when I came in this morning and they were still feeding Isaac. When they plan to extabate him...they hold his feeds. But, they decided to give him one more day to rest and get his lungs as strong as possible so that we can have success tomorrow!!! (fingers crossed, prayers said). He still looks sad and groggy. But, he didn't cry as much today...he actually slept most of the day. He gets mad when we move him...but, other than that, he's such a trooper. They increased his feeds to 24 cal (he's still getting 20 oz an hour continuously). His cultures they took a few days ago from his gunky lungs came back showing positive bacterial growth...hence the fever that comes and goes. He is on a 10-day antibiotic regimen...with 6 more days to go (I hope that doesn't mean that we have to stay 6 more days??). He had a fever when I came in this morning...but. wasn't warm to the touch. She took a "bum" temperature reading...and thank goodness! He could have had the fever yesterday and the armpit temp readings didn't pick it up. Sorry Isaac...but, I'm going to keep requesting "bum" temp readings for you!
He pooped again today! YEAH!!! I'm having a blast changing his diapers. I still can't hold him. And I'm SO short...that I can barely reach his melon to kiss him (i need a step ladder). I do put lavender lotion on his arms and legs everyday...and take a little and put in his hair to make the "do" that sticks up. (it's how I pass my time). You're lucky you haven't seen tiny braids in it yet...it's almost long enough again to corn row!!
I made a discovery a few days ago that's pretty gross. Isaac has been wearing socks on his hands so that he doesn't pull the vent out of his mouth. Well, I took the socks off one day...and OH MY GOODNESS...that stink that came from them! They smelled worse than his diaper. So, I washed them and let them air dry that day. Well, I let him hold my fingers...and his stink was then all over my hands! (totally gross). Well....his stinky smell came off of my hands...but, his still stink. So, today I took the socks off to let them air out...and they looked like raisins. He must be sweating alot. I kept them off all day and put them back on before I left. (In case he tried to hurry the process and pull the vent out himself). Any ideas about getting the stink out?? If the vent gets pulled tomorrow...the socks can stay off of his hands...but, I'm not sure how long the stink will stay in his hands?? (Oh...the things I worry about).
You should know that Joe bought me a big TUB of Butt Paste this trip. And I'm applying it generously...so, far...no bum rashes!!!
I think that's all that happened today. Pretty uneventful. Oh...I did buy a newspaper so that I could see all the holiday sales papers (just to look JOE)...and there weren't very many in today's paper. Do they all come out on Wednesday?? I mean...I will have Joe here on Friday to watch Icky...I could totally buy a new suitcase to carry back xmas presents that I shouldn't be buying...but, they'd be on sale!!!
Off to bed I go...One more call to check on Isaac before I dose off!

Well...I don't know why Isaac was such a cranky bug today...but, he started up again crying...we did a quick suction...and like magic...he fell asleep. The respiratory therapist came by also and said that his vent settings looked good enough to maybe try and extabate tomorrow. Isaac is still getting breathing treatments every four hours, and with the constant suctioning...maybe our little man will be ready to breathe on his own tomorrow!
Guess what...he also just pooped again! (It was rather gross...but, 2 poops down)!
What I thought was going to end just yucky...is turning out better than I could have imagined.
Can you tell in the pictures how horrible he looks today. I'm not sure if it's because he's been crying or because he doesn't like the vent or if it's the drug withdrawal. Either way...he looks quite pitiful.
I was planning on pulling an all-nighter...but, he's finally settling down, so I might start heading back to RMH about 10pm. I love it when I can leave without feeling like he's going to cry because I'm not there. (you know...it's just not a normal feeling to leave your baby somewhere else...)
**I almost forgot to tell you (or did I??) He's sucking on his pacifier that's attached to the frog (while the breathing tube is in his mouth....does he have us wrapped around his fingers or WHAT!

Isaac's been crying all day. It just breaks my heart. He'll sleep for about an hour or so and then just turn red and try to cry....but, he can only tear up...he can't make a sound because of the tube...oh..and it just makes me want to cry with him.
He did get his foley out (the pee tube) and he's peeing like a champ. They are lowering his vent settings in hopes to try and get it out by tomorrow or Monday. We are fortifying his milk with enfamil to 22 calories. I can't WAIT for Joe to come down...I have a few jobs for him to do for me when he gets in. It's been another LONG and stressful day...but, I'm seeing the light..it's sooo close. I can't wait until Isaac's vent is out and his chest tube is out, so that I can snuggle him and put him in a wagon and take my butterball home. Joe is taking the boys to church tomorrow...so, maybe my prayers will be answered. I'll post later tonight if we have any changes....but, I just hope that Isaac can get settled and find some peace tonight.

So...I just called Julie..and Isaac POOPED!! He's been holding it in for almost a week..and boy, I bet that was a STINKY diaper! I'm so sorry Julie!!! But, maybe that's why Isaac was a little cranky tonight...he had a tummy ache. Mystery solved. Now...if we could get this little guy to breathe...we could be home to eat Thanksgiving BUFFET style in Vegas....I've been dreaming of that moment! (But, if we're still here...Boston Market has carry out...and you guys know i LOVE Boston Market!)
Now...I am going to sleep!

I still asked the names of his antibiotics...twice...I just forgot (sorry mom)...but, they must be working, because his fever didn't come back today. Tonight, we got moved to an isolation room...you'd think that Isaac would have gone to sleep when put in a dark, quiet room...but, NO...He was being a cranky bug and crying, so we gave him versed. Nothing. So, he's still crying...so, we gave him morphine. Nothing. That little guy is still awake watching Yo Gabba Gabba! Julie (our night nurse) actually knew what this cartoon was...Sorry sweet Julie!!! I hope he falls asleep soon. He's still really congested...but, Connie's been giving him suction and breathing treatments. So...she'll get that gunk out!!
It is the time for Thanksgiving...
It's been a REALLY LONG week. I've been alone with Isaac since Tuesday night, my back misses my "sleep number"bed, my baby has his tube back in his mouth, I miss my boys...I'm a wreck. I'm sorry about my venting and ranting. I LOVE Stanford, I LOVE ALL OF OUR NURSES, I am thankful for all the series of events that have led to this moment.
Two months ago I was able to see the ultrasound tech from the OB doctors that found Isaac's heart defect. And I just came up to her and hugged her..and started crying. I told her that because of her...our baby was born at the right hospital and was led to the great surgeon and great hospital that would ultimately fixed his heart. That made her cry...we were both blubbering gals! I'm so thankful for all the heart mamas that we have met and all the guidance and friendship that they've provided. I am thankful for Dr. Acherman and the reassurance that he gave us at every ultrasound of Isaac's heart while we were pregnant. (He kept us sane--well, as sane as we get). I'm thankful for our OB doc that delivered Isaac...even though he made me have contractions for WEEKS...I'm still glad that Dr. Schwartz was there for the happy delivery day! As much as I can't stand the nissen-fundoplication...I am thankful for the g-tube and the chub that it has put on Isaac. I tear up every time I think about all the surgeries that Isaac has had, all the time we've spent in hospitals and doctors offices...and what a happy baby he is. Although, I certainly am not thankful for his defects and the struggles....but, I am thankful for all the people we've met that have made his life easier...and I am thankful for the kind of parents that Joe and I have turned into because of this defect. I would never been able to imagine how this life would feel and it's hard to explain to people the world we live in and the impact these baby dolls have on our lives. I never intentionally want to sound negative or unappreciative of anything or anyone...but, sometimes the stresses of MY everyday life can turn me into a little bit of a pessimist. I'm sorry If I rant and complain too much on this blog. This is Isaac's journal and my way to remember the times we share...the good and the bad. So...with a thankful heart...for all the people that help me keep my baby happy and healthy...no more stinky rants. If I have a bad day..I'll whine and whine to Joe. I'll keep Isaac's blog as happy and funny as I possibly can.
With that said...I need to call and check on my little guy...boy..I hope that he fell asleep!

OK...Isaac's heart rate and bp have gone back to normal. He's back on the vent and he is breathing a little over the rate of it...so, that's a step in the right direction. He was put on steroids and breathing treatments today...he's a wheezing little guy today. I hope that's not one more thing we have to add to his "list"!
Nurse Libby is taking EXCELLENT care of us. Isaac must have tired himself out last night trying to breathe...because, he is sleeping so good today. We have started his feeds again...he's getting 20cc's an hour. Oh...he'll be able to fit in his skinny jeans when we get home! We changed his chest dressings this morning..and his incision is very long, but it is healing great! Maybe Mr. Isaac just needs a few more days to rest. His lungs are just wet...so, he's still on extra dieuretics and that along with the steroids should help expand and dry up those lungs. (now...I just hope that Isaac was listening to those directions!). I'll post again tonight when they round again. But, our favorite card, Emily, is on tonight...and she'll fix Isaac right up!!!
Oh..and all the cultures they have sent to the labs have still come back negative for infection. They have no idea why that fever comes and goes. But, he's still on a broad spectrum antibiotic. (I'll find the name MOM!)

Icky (Isaac's silly nickname) has a really low heart rate this morning. I am not sure what that's all about so, I am just waiting for the docs to round. We have a great nurse today, libby, but.....we are sharing her with a twin....I forsee a LONG day ahead for us. They are still holding his feeds ( since yesterday am)....he is losing all his chub!!!! I will update after rounds.

Look at the time stamps from the last post...and this one.
They just called...FREAKED ME OUT that my cell phone was ringing...I thought it was my alarm and it was time to get up already...
They had to put his breathing tube back in.
His CO2 levels kept climbing and it was hard for him to breathe...
She did say that his airways were swollen..so, they used a smaller breathing tube this time. I'm not sure how long they'll give him on the vent to start again...they've been cutting his methadone and ativan...I don't want him WIDE awake with this in his mouth...
So..looks like he just needs a few more days to rest. (looks like I should book Joe's return flight to visit us next week).
Back to bed....If I get anymore news...I'll post.
And my mom didn't think that they would call and bother me!

Sorry I didn't get any posts in during the day...but, it was CRAZY!

Now...Mr. Isaac...when I got to the hospital this morning...he was taken off his feeds in anticipation of extabating today (taking his ventilator out). They weaned the vent settings down to zero..so, Isaac was taking all of his breaths himself...his CO2 levels just remained too high (he was berathing out the CO2...he was taking too shallow breaths). We did eventually get the tube taken out at 5:50 (which I almost missed...but, I won't complain about it). But, his CO2 levels are STILL high...so, he's on a high flow oxygen canula (at 10 liters)...if you don't know how much it is...just know it's alot. They may have to put him on cpap (see Terri's blog for a picture of that thing...)...Isaac will NOT like it if they have to do that.
His fever started up again tonight (which, by the way...we have an awesome night nurse named Andrew...the guy nurses are always great!). Andrew quickly gave him tylenoyl, turned on the cooling blanket, repositioned him, suctioned him...and waaalaaa...the fever came down! WhoooHoo. They did start him on antibiotics today.
(I'm totally trying to remember everything without looking at my notes...bad for you..because my brain is fried!)
I had dinner tonight with a new heart mama...Kelly. She has a little babydoll that just had surgery...so, I'm giving her all you heart mama's blog addresses (show her some LOVE!)
Isaac looks like he's lost a lot of weight. Not at all the chunky monkey he was a week ago. It's too late to upload pics (I'm just too tired)...but, I promise that I'll do it tomorrow at the hospital! I mean...he has a chin and everything!
Joe's in Phoenix today and tomorrow, the boys are driving mom bonkers at home...and Isaac is just chillin. He did smile at us this morning while the vent was in. At our last hospital stay...he didn't start smiling again until about 2 weeks after we were home. I hope this means that we finally have his meds right!
Oh...I remember what was getting me in an uproar today...Isaac's g-tube site. I came in this morning and was cleaning it (because, I'm compulsive about cleaning it)...and it's oozing and bleeding and raw. He started crying when I touched it. I was SO MAD...that site has never even been the slightest pink before...I keep it immaculately clean.
The docs look at it. They tell me that a "wound nurse" needs to look at it...and she'll be by to see it TOMORROW! Are you kidding me?!?! So, I've kept the site clean today, showed Andrew (and I trust that he can clean it)...and I called our home health people and asked them to shiip me a new button (Isaac just got a script for a bigger size..and maybe it's just irritated because it's too small).


Oh my gosh....one more crazy thing happened today. Well, last night. I went into our cabinets (we have our own here at RMH and they are labeled) to get some cookies. Someone has stolen my brownies, cookies, loaf of bread, and peanut butter. Can you believe that?? I mean...there's not ONE crumb left on that shelf! What a stinker!!! I hope they really needed the food (I would have just donated my food if they were that hungry)...but, imagine my face when I look and the cupboards are BARE!
WHAT A CRAZY DAY!!!
Can you see now why I didn't have time to post! This place is spinning my head in circles. But, I'm eating good, (too good)..sleeping at night...and loving my snazzy new phone (that I can't totally get working still)...but, I can't wait to see my Joe again. If we're here for Thanksgiving...he'll come up and we'll all eat Boston Market with Isaac (maybe I can slip him some gravy in that g-tube!!)
Have a good night guys!

We have Sean for our nurse tonight. He's a big shot charge nurse that is taking GREAT care of Isaac.

But, I just got off the phone with Sean and Isaac's temp is down and he's sleeping like a champ. I snapped a pic of Sean...but, I'll post it tomorrow. I'll be in early tomorrow before they round so that they don't make any changes that I disapprove of...someone has to keep them on their toes!!!
**Chris got his report card and he did AWESOME!! I'm SO proud of my big stinker! Both boys are working hard at school and they are making their mama as proud as can be! (said with a country accent!)

Well....Isaac's fever is still slowly creeping up. Currently at 38.8 and he's on the cooling blanket and on tylenoyl. I told the nurse to check his blood for infections...so, they just drew blood for tests and took a urine sample.
I was able to get Dr. Perry and Dr. Hanley's pics today!! What great docs!
I'm not sure who our nurse is tonight...my fingers are crossed!

Well...Isaac's fever is slowly creeping up not down. It's not that much of a fever yet (38.5)...and that's with tylenoyl. So, that fever makes his heart beat faster and then his blood pressure higher...urghhh.

Here's a link to see the news about the twins: Click here


I'll post pictures tonight when I get to the RMH (if I get there!). I was able to get one of Dr. Perry and...ta da da da...Dr. Hanley!! It was my LUCKY day!
Ta Ta for now!

It has been a busy morning so far. They pulled out one chest tube, two central lines, and started him on methadone and Ativan for drug withdrawals. Whooooo that is a lot and I have not even had lunch yet!

Our night nurse is Arlene...and she was very nice. We haven't had her before...but, she reassured me that she could handle the responsibility of being Isaac's primary caregiver overnight! As far as Isaac goes...we have a couple of things that we're keeping our eyes on. His blood pressure is a little high, but they have drugs for that. His fever is creeping slowly up again...and we have tylenoyl for that. His left leg isn't as puffy...but, they did the cath today in that SAME leg (after I told him to leave it alone)...so...we're just watching it to make sure the swelling doesn't come back. And..we're watching his secretions...they're finally getting thick and junky...YUCK! There's lots of suctioning going on..but, they're increasing each day...so, we may have to get a culture tomorrow to make sure an infection isn't trying to brew. But, other than that...my man is high on morphine and hopefully having sweet dreams of colorful bears dancing and singing!!!
Joe made it home tonight...and was so excited to be back that he woke up the boys! (on a school night)...I'm sure they'll be up all night...all of them!
I pulled Isaac's toys out tonight...because, once that vent's out...he'll be ready to play! Can you tell in the pictures that he plays with them even in his sleep! He's amazing!
Thanks Ray and Annie for taking the time to make Isaac a heart bear...it's PERFECT! I'll put it in his crib tomorrow and take a picture to share with everyone! We love it!

Icky's bag of fluids were hanging upside down from the pole and I had to pick them up... It's been a LONG day and moving him around just has made a mess of everything in his crib...It's going to take days to clean it all up! And maybe I'm just having a bad day...It's these little careless things that can cause BIG problems when the little guys are recovering.
Joe just left us to fly home. And I need to get back into the room to save my baby! But, I'll post pics tonight...maybe even one of his messy bed (oh...it's just getting on my nerves...I'm not a neat freak...but, I think those kinds of things should be orderly).
Ok...finished now.
The rant is just so you guys know that I'm normal and not always Ms. Sunshine (usually..but not always!).

Isaac is out of his cath. He only had two collaterals to coil and he is sleeping soundly.

Isaac went back for his heart cath about 9am. (the first case didn't show up...so, lucky for us!) His left leg isn't as puffy today...but, I still asked Dr. Perry not to use that leg for the cath procedure. Now...we just wait.
Joe got me an iPhone so that I would have good phone reception and internet at all times while we're at the hospital...now...my stinking phone is not working. I'm sure it's TOTALLY user error...but, thank goodness the hospital computers are up and running...(that's what i'm updating you on now).
I will post once he's out of the cath and let you know how it went and how many collaterals had to be coiled!

Isaac He's still doing awesome! Although, the left leg is still very swollen. There are talks of a blood clot, but they are just watching it for now. If it's a clot, they said that they would just give him Heprin. He is scheduled FOR SURE to go to the cath lab tomorrow. He'll be the 2nd case..so, he should go back about 10 or 11:00. They're on a mission to coil any stray collaterals that may be looming around. (3 or 4...but, there could be more once they get in there). I have NO idea how long this cath will take. But, the talented Dr. Perry will be performing the cath and he always does a great job. Isaac's day nurse was Ann again...and his night nurse tonight is Nelse (she's new). Don't worry...I checked out her background before leaving her in charge of Isaac. (She's worked at Boston's childrens...so, she's qualified).
Isaac was opening his eyes alot today..(with the moving out of 2 babies to make room for the new babies)...and I was able to take the pics. They are still keeping him very sedated...but, that doesn't stop our nosy little guy from wanting to see what's going on around him. The vent will indeed come off in the next day or two...and we'll work really hard to get moved on up to 3 west...and then out the DOOR!!! Vegas...here we come! I do hope we get to eat turkey at home instead of the hospital...but, if we're here...we'll make the best of it (TAKE OUT!)
The big boys slept in our bed last night...I'm not sure if it's because their rooms were so messy that they couldn't find their beds...or if they really miss us! (so sweet). Joe flies home tomorrow night. So...I'll be in charge of Mr. Isaac myself. You know...I've been training for this day..and I think I can handle the responsibilty!
(oh...it's late, I'm tired..and just being silly) I hope everyone has a good night...and I'll be sure to post tomorrow once he's out of the cath. (wireless is back up at the hospital...whoo hoo!) All is right in the world!!!

The heart cath was rescheduled for tomorrow about ten o clock. That's ok though ... Because that is just one more day that he can rest. Once he has the cath, they think the tube should come out in a day or so. The only change in Isaac today is his left leg is a little puffy. So, we have it propped up.

I LOVE not giving you new updates...because, he's just chillin'....and that's the way it should be! We had a fun day with Ann...and we're thrilled to see that Jing is our nurse tonight...YIPPIE!! They're just keeping our little man comfortable until tomorrow...they'll make him mad with the heart cath...and then, try to take the vent out on Tuesday (he'll tell us if he's ready). They had to pu "no no's" on his arms last night...even in his sleep, he was reaching for the vent or any wire he could find! (That's our little guy...the best fine motor skills of any 7 month old out there!)
Jing and Rachel made the cute picture posters you see hanging on Isaac's bed...we LOVE them!
I'll be sure to post tomorrow after the cath to let you know how everything went!

Isaac is doing awesome today! We had Ann today for our nurse and she was great. We have no complaints. We are hoping that we get Jing again tonight. They are trying to get us in for the cath tomorrow. Still updating on the cell...so my fingers need a break!

We're back at the Ronald McDonald House for the night...and Isaac is still a champ! I still can't believe how good he's doing (knocking on wood now). No changes in anything today...liver's good, sats are still at 100, bp is good, they are still slowly increasing his versed and morphine drips...he keeps kicking his legs and touching his face..he's trying to get that vent out in his sleep! There still isn't internet access at the hospital...that's why I can't email everyone all day..and respond to all the comments...but, I do read them and they make me SMILE! You guys make me feel SO loved!!! The cell phone service isn't great in the hospital either...I feel like a fish out of water!!!
Isaac's nurse tonight is Jing. We didn't have her last time, but she's a nice one!!! (I don't know how we're getting SO lucky!) (I'm still keeping the good nurse list for you Lisa!) Rachel is there again tonight so the two of them are going to decorate Isaac's crib...I can't wait to see what they do!
Isaac's little hands and toes are so cold, but when we put socks on them today...he kicked and waved his arms until them came off! (That's my little stinker!)
I miss the big boys TERRIBLY...and they are so sweet when I call them. The first thing they ask is "How's baby Isaac?". What awesome big brothers they are!
I think that we should know by Monday what day they are going to schedule the heart cath...it will be nice to get that behind us! You know that we're in the exact same spot that we were in last time we were here...it's throwing the nurses for a loop! They look at me and I look familiar..but, I cut off a foot of hair since our last stay...and then, they look at Joe, and he looks familiar...and he's lost a ton of weight since we were here...but, the name....that's when they remember who we are! And we're still throwing around Terri's name...TOTALLY name dropping...to get special treatment!
Look at the cute sign that nurse Rachel made for Isaac...we picked on her tonight because she spelled it wrong!! Funny girl!

Good morning! No major changes with Isaac overnight. They just suctioned him....and no junk...whoooo hoooo! They also just started feeding him.....three cc's every hour. That's not enough to make him feel it....but, just enough to get his belly working. He's still waving at everyone in his sleep...so they increased his versed and morphine drips. He's still a little puffy....that lasix should start working soon. And he has a rash under his neck from the tape from his chest dressing. The adhesive from tape makes him break out in a horrible rash.....what a lovely allergy to have in a hospital when they like to tape you up! I'm at the hospital now....I left Joe sleeping. We'll probably take turns again today....He doesn't like me talking about him...so I won't tell you that he's getting on my nerves again (It's not my fault he doesn't know how to stay off my nerves after all these years)!
Really....we have no problems (except my nerves)....I can' believe how he is recovering so far. I'm hoping that this extra week on the ventilator will help him be happier when he does wake up....the worst pain will have happened while he was sleeing.
His nurse today is Marilynne...we haven't had her before, but she is very nice. We are having some pictures printed tonight and crazy nurse Rachel is going to decorate Isaac's bed for us!

Isaac looks so good. His liver functions seem to be improving. They have almost doubled his morphine and versed to keep him comfortable and still. May gave him a little wash down and he just looks so peaceful resting. His temp is maintaining....no higher or lower. He had a ng tube placed in his nose to help decompress his belly (his g tube is also opened)...but, they have now removed the ng tube....g tube is still venting. He is off of his calcium. He has 2 drainage tubes that are draining at a moderate rate. He is quite swollen now....the lasix will start tonight. They are still suctioning him alot...lots of junk to get out before it settles. He has a central line, arterial line, broviac line, and 3 ivs....whoooo...and his pacer wires in place. There are talks of getting him in the cath lab on Tuesday or Wednesday....which means that he will remain on the ventilator a few days after that.
I'm so glad that Joe's here. He let me take a nap this afternoon while he sat with Isaac and now I'm sitting with Isaac while he takes a break.
Chris amd Eli seem to be doing good, Aunt Mandy will visit them this weekend, and everyone loves looking at pics of my new niece...her birthday is the day we will now call Isaac's heart day....how sweet!
Terri...all the nurses still talk about you....and I tell them all that you won't come visit me....it cracks them up!

Good morning. Overall, Isaac is doing good. He's at high risk for pulmonary hypertension (wet lungs), but they are monitoring that very well. He is on a cooling blanket, but still has a slight fever. He had a shock to his liver during the operation and now has some elevated numbers they are following. They are suctioning him often. He's on morphine for pain and versed for sedation....and that boy is still waving his arms around...freaking the docs out...so, they increased the doses and give him a paralytic every few hours when he gets too fiesty. He has a few collaterals that need to be coiled....so, they are trying to get him back in the cath lab next week (that will be his 5th cath). Our nurse today is May...and we had her last time. It is SO COOL that we remeber so many people and that they remember us. No one can believe how fat isaac is now....and he is a little puffy today. All in all...we are so thankful for Dr. Hanley and everyone here....what an awesome gift...it's our early xmas present....and I'm glad that we got it early!
We are in the icu...so, I won't be making alot of calls...but, I'll keep updating the blog with ny cell!

Pics after surgery.

Pics before surgery.