Tuesday, July 29, 2008

We're home!

Glad to be back.  

just wanted to update, but tired. so it's to the point.  :)

Monday, July 28, 2008

We're going home tomorrow!

So far, all the labs are very good, and the culture after 24 hours hasn't grown, so if it's still no growth in the morning, we're outta here! Today, my cardiologist, Dr. Murphy did rounds (he's also a peds cardiologist), and he asked if I could come down to his clinic downstairs for some pictures. I guess Stanford is doing an article about adult congenital heart defects in hope of promoting donors, funding, etc. for our little one's. I was so honored to help out w/ that. They just took a picture of me and Dr. Murphy in an exam room, with him checking my pulses. He's such a great doctor.

I met a cute little boy, who is 2 years old. He is here waiting for a heart transplant. His mom kept telling his pediatrician that something wasn't right, and the Dr. kept saying, "you're a new mom, and you're just being paranoid." She knew something wasn't right. She took him to Fresno Children's hospital, and they took an xray. His heart looked like Mickey mouse. His atriums are enlarged, and getting worse. He has some rare heart defect restricting mylopathy? I can't remember, but this was a total shock for the family. They tried for 3 years to get pregnant, and now, their precious 2 year old is on the 1A heart transplant list. He is so adorable, and his mother is the sweetest thing. I'll be thinking about them. The doctor who kept telling mom that nothing was wrong flew here twice to apologize, and was crying, offering money. She denied it, and said, "please, just don't tell new mom's that they are paranoid." We know are kids better than the doctors do, and I hope that opens up his eyes. Maybe he can spread the news of this unfortunate situation, and more doctors will start listening to us.

I saw Drew's picture on the board here in 3 west. He's so cute. He really stands out on that board. Smiling little guy. I don't know how Andrea did it here for 7 weeks, and Drew, having chest tubes in for so long. He's a tough little man, and I admire their family.

Sunday, July 27, 2008

Post op 6

Last night I stayed at the hotel again, and so did Ross. My mom stayed w/ the baby for the second night. He had a good night. But, before I left, his temp rectally was 100.3. A half hour later it was 99.9. The doctors didn't seem too concerned because it came down, and he looked really good. Vitals were great. This morning, they took blood work for routine stuff. Then, the surgeons wanted his blood cultured because of the small low grade fever he had yesterday. This means that the culture has to sit for 48 hours. This means being discharged Tuesday, instead of tomorrow. I was so bummed out. Well, still bummed out. He looks so good, and even the N.P. thinks he's ok. With only a single ventricle, they have to be cautious. There is still a slight possiblity that he can go tomorrow. We're waiting for the first blood draw results. If the white count is low, that's a good sign that he's not infected. Then, if the culture after 24 hours doesn't show anything, that's another good sign. I'm thinking, if the two signs are good tomorrow, and he looks good, why can't they send us home. If the culture does come back showing something, they can call us, and we can go to a local hospital for anitbiotics. Stanford doesn't like that too much, but I do. I guess we're just ready to leave. This hospital is making us sick, literally.




That's it for now. He also got a visit from his other grandma this morning, so that was nice. My mom left, and so did Grandma Lou. Baby Ross is resting, and I'm still wearing a mask, as I'm still a little sick. Nyquil, rest, and a very hot shower seems to do the trick.

I'll post pictures later.

Saturday, July 26, 2008

Germs are in this hospital........

So, my dust/dry air myth was wrong. I ended up getting a fever yesterday afternoon, and I checked into a hotel. Ross stayed w/ the baby until my mom arrived from Sacramento. I was so miserable. Body aches, stuffy head, fever, chills..and I really didn't want to expose baby Ross, even though I think he's suffering from a cold. He hasn't spiked a fever..yet, so far so good. I got some serious rest, went to bed at 6pm and woke up this morning at 9am. I got to the hospital, wearing a mask, and I'm feeling 75% better. Still stuffy, but no more fever. The baby is resting comfortably. He is still kinda stuffy, and he threw up once today. No fever though!

His xray looks good. The heart echo they did yesterday shows no changes from his pre-op echo (as far as heart function goes.) It's on the normal-low side of function. This is what they expect for his HLHS. They will, however start him on a new med. Not digoxin, but something else, and I can't remember the name. He will be getting only 10% of his dose, so it's a very small amount.

We are to be discharged Monday!!!!! I cannot wait. This dry air/germy hospital is making us sick, and I have a feeling he'll feel better once we're outta here.

That's it for now. My mom came to the rescue, by coming here in rush hour traffic to give us a break. Thanks mom!

Friday, July 25, 2008

Tube free!!!!!!!

After a lot of talk yesterday about leaving his chest tubes in, and changing formulas, he got his tubes out this morning! He only put out 2 cc's in the right tube, and zero in the middle tube. We are SO happy! He seems more comfortable, and we'll probably being discharged Monday.

All is good over here!


Thursday, July 24, 2008

Tonight

Well, baby Ross was sleeping most of the day from the Tylenol codeine. Then when he was awake, he would just stare at the wall. He was OUT of it!!!! I asked the N.P. to cut back on the codeine because it was way too much for him. She agreed. His right chest tube is still putting out just a little of the creamy stuff, but it's pink, so it's hard to tell. Dr. Reddy wants him to go on a low fat formula, but the N.P. disagreed. I had to side w/ Dr. Reddy, and who wouldn't? So, there is a problem now w/ getting the formula because he is sensitive to cow's milk protein, which is in most formulas. Even the GI doctor in Folsom had me on a non dairy diet, because of breastfeeding. Because of this, they need to consult w/ the GI doctor here before giving him this new formula. Hopefully tomorrow he can start it. Even w/ all of this, we might go home this weekend! His xrays look good, and the output of the 2 tubes was 10 cc's total in 24 hours. That's really good.

Then, the little guy wanted to scare us some more..He has been stuffy in the nose since we came to the 3rd floor. We've been using the nose suction, and saline drops. I kept asking nurse after nurse, N.P. after N.P., even doctor after doctor....nobody would help, or even care. Finally, a blessing. Our nurse tonight actually did something about it. I told her about it, and also told her that I woke up this morning from a sore throat and stuffy nose. I then noticed the vent in this room is filled w/ dust! Nasty!!!!!! I know that I can get sensitive at times w/ dry air, and dust. So, maybe he is too. So, he got some benedryl, and I put saline drops in his nose. He seems to be better now. Actually, big Ross is at Safeway getting me some benedryl because I'm not feeling so good.

Baby Ross decided about 45 minutes ago that he just needed some hot nurses in his room. He was starting to desat to the high 60's..so after our nurse tried increasing his oxygen, moving the probe from foot to foot, another nurse came in. She tried the same thing. Then, a third nurse came in, and baby Ross was struggling to poop. My trick at home is a rectal thermometer. So, there we were, sticking that thing up there, and he poops! But, his sats were the same. Finally, they put the probe on his hand, and HELLO, 90%. All of these nurses were just telling him how cute he is, and making him smile. He was loving it. He's a ladies man.

So, now he is sleeping, and that was our night tonight.

post op 4 news

Doctors just made their rounds. He can have the pacer wires out today, nice! He is feeling so much better today, and more smiles, kicking, a lot less crying, and more sleeping. He is now off the oxygen.

Now for the not so good news..yesterday, I noticed that some creamy looking stuff was coming out of his right chest tube. I told the N.P. about it, and she wasn't concerned. Another N.P. looked, and wasn't concerned. But, I knew it wasn't right. Finally, they took a lab sample, and it came back w/ a name called cholethorax. I know I'm spelling it wrong, but it's like fatty tissue's from the stomach emptying into the chest cavity, or something like that. So, the remaining 2 chest tubes need to be in another day. He might have to go on a low fat formula for awhile. The drainage is SO much better though. It's really not that bad, and the creamy stuff was only once. It might just have resolved on it's own, but we'll have to see what tomorrow brings us.

His only I.V. blew last night, so he's taking everything by mouth. He's on Tylenol codeine. He is so sleepy today, and I think it's from that. He just seems really tired.

Other than that, just sick of this place already, and it's only post op day 4! Ugh..........

kira

Wednesday, July 23, 2008

post op 3 news

During the night, baby Ross slept about 2 hours at a time. So, I'm falling behind on my rest too. He is starting to smile more often, and kick his legs like he does at home.




The doctors came by for their rounds, and all good news. He just got one chest tube out, and he can get the last two out tomorrow, along w/ the pacer wires. He still has the pacer wires because of a slight arrhythmia issue that he had in the OR. It wasn't a huge concern, but they are being conservative. He is NOT on digoxin anymore! his last digoxin was the night before surgery. This is great news. His heart rate is great, about 120's, and when he's mad up to 140's. His sats are still between 85-95%. He is still on nasal cannula, down from 2 liters to 1 liter. He doesn't need the oxygen, but doctors say that with the Glenn surgery, they like the kids to be on it for a few days to help w/ the pressure in the lungs. It also just transitions into the new blood flow that he's getting. He has no murmur anymore. His lungs are clear, but the chest xray showed a slight edema on the right side, which is normal for post op day 3. He is on 2 diuretics until tomorrow, he will just be on lasix.




He's eating well, and gained weight since being here. Oh, and we can return the scale from home, and return the pulse ox machine...don't need to monitor anymore at home! =)




He still has to get his pre-op echo, and his EKG looks good. They are guessing we'll be discharged Saturday. That would make it 6 days here. Yoo hoo. Things can change, but they say he is sailing right along.




Here's a picture of his incision. They just took the dressing off for good. Doctors are pleased w/ it.




Tuesday, July 22, 2008

On the 3rd Floor!


In the CVICU, puffy eys are better!



On the 3rd floor, and starting to act more like himself



Smiling...warms my heart


We're in a private room, and baby boy is feeling better. He actually smiled a few times tonight. He's such a trooper. Here are some pictures, then we're off to bed.

2 days after sugery

Baby Ross is such a trooper. He's had his share of suffering, that's for sure. They try to keep him comfortable, but it's hard for him. BUT....they took out his R.A. line, and 3 IV's. Yey!!! Now I can hold him. He still has his 3 chest tubes, and only one I.V. just in case they need it. He is off all medications, and is just taking Tylenol and Motrin. Everything is looking so good, and the doctors are very happy with his progress. He is moving to the 3rd floor today! His chest tube drainage is better, but they want to keep them in today. You know Stanford, very Conservative..which is OK. I do hope they come out tomorrow. They said when all three are out, he can go home. I figured out why his eyes were so puffy and red. Doctors were saying edema, but i disagreed, and I was right. He has a sensitivity to paper tape. He's been trying to scratch his eyes ever since day one of surgery, and they were puffy and irritated. I finally came to the conclusion that they had to put tape over his eyes during surgery, and that was causing him itchy eyelides. The doctor then agreed and gave him benedryl. It helped! I took another picture of his face, and he looks so much better now. I will post the picture later, but I gotta go now.

Kira

Monday, July 21, 2008

pics


Right after surgery 7-20-08



Day after surgery, no more tube!
7-21-08

day after surgery

He is doing great, (medically). He gets upset a lot, and it's heart breaking. The fentynal works well though. He got his breathing tube taken out last night around 10pm. His saturations are between 88-96%. He looks good, eyes a little puffy. He is getting is catheter taken out from his private part today, yoo hoo! The doctors just made their rounds, and siad he is doing excellent! Another doctor said he is the biggest single ventricle patient. He will prob. get 2 chest tubes out tomorrow, and his R.A. line out Wed., and then his last chest tube after that. No word about moving to a step down yet. Vitals are great, and he had dome milk!

That's about it for now. I just want him to be comfortable. Watching him suffer is heart breaking.

Kira

Sunday, July 20, 2008

He is doing good

He's still intubated, but they are cutting back on his breathing through the tube. That means that he is over breathing the vent. It's a good thing. He started moving around, so the nurse gave him morphin, and within 30 seconds, he started getting really active, so we had to hold his arms down a litte. I remember this from his last surgery, the morphin makes him hyper kinda. So, i told the nurse and they will use Fentynal instead. Then, she gave him some versed, and that did the trick. She also brought in some earphones, and i brought in a CD that he listened to inside the womb. That's helping too.

Other than that, vitals are stable, and they plan to extubate later tonight I think. His color looks really good. He looks darker to me. They have him in an upright position because of the increased blood flow to the head and upper extemities (from the glenn), and i guess this can cause a headache for a short period of time. this is standard procedure. He also got a tylenol suppository, which i thought to be interesting..

I'll update when we get more news!

Kira

Dr. Reddy came out smiling!

Dr. Reddy just came to us, smiling, and said everything went well. No complications, and he said that he looks good! We can go see him in about 30 minutes. What a relief!!! I asked how many chest tubes. 3 chest tubes. He is super cautious, so that's ok. I thought there would be only 1 or 2, so that was kinda a bummer, but I know Dr. Reddy is good at what he does.

I'll update later, after i get enough time w/ baby boy. =)

Kira

45 minute call

Judy from the CVICU just called. She said that he will be out of the operating room in 45 minutes. Dr. Reddy will be out any minute to give us the info. Everything is looking like it's on schedule, just like his last surgery. =)

Kira

He's in the operating room!

We handed him off at 8am today. I am happy that he got in, but still having the emotions of it all. I'm actually doing better than I expected, but it's still hard. We're just glad to get this over with!!! He went in at 8am, and he should be done around 2pm. I just went back to the CVICU to get breastfeeding bottles/labels, and i saw the bed that he'll be in. It's the same as his last surgery. All the memories started creeping up on me when I went back there, and especially when I saw the empty bed that he used to be in in March.

The doctors today said that he's the biggest HLHS post norwood baby, and one of the healthiest. That was so nice to hear. We hear it so much from doctors, but it doesn't get old. Baby Ross is such a blessing to us, and he is so strong. I told him that he's gonna be stong like last time, and that I'm so proud of him.

Daddy Ross is doing ok. He just went to get some food. I got my starbucks, and I found a good spot to wait. They usually don't do surgery on the weekend, so it's pretty quiet over here, which is nice. I'm going to take a nap.

I'll post when we see our little man.

Kira

Saturday, July 19, 2008

Nope..not today

4th time now being cancelled. This time, there was an emergency surgery that Dr. Reddy had to do last night, and he wants him and his team to rest. He didn't want to operate having been up all night. He told the doctor who called me that he is GOING to do the surgery for Ross tomorrow...but, again, we will know when I hand him off to the team.

Maybe we'll have better luck for the 5th try..

Friday, July 18, 2008

surgery tomorrow???

I just got a call from a doctor that is from the surgical team. He said that he is very confident that surgery will go tomorrow. He will call us at 7am and say, "come, or don't come". That way, we don't have to wait at the hospital for 3 hours like we did this morning. Surgery is scheduled for 8am tomorrow.......so please keep your fingers crossed!!!!! He sounds confident, and told me that they are really trying to get this on tomorrow because he's been rescheduled so many times now.

We are just hanging out at our very nice hotel, that Stanford will be paying for...=)

I will update as soon as I can in the morning.

Kira

No surgery today..........

This was the THIRD time it has been cancelled. I am beyond upset. Sorry it took so long to post, but the hotel we were staying at didn't have reception. We are now at the Westin...and it's really nice. I think it's a 5 star. His surgery might happen this weekend, but don't know for sure. I threatened the administrative staff that I would take him to UCSF if it didn't happen this weekend. Oh am I upset.

I'll post more when we know something.

Kira

Tuesday, July 15, 2008

Cardiologist appt

















Since Ross' surgery got rescheduled, Dr. Wright (his cardiologist) wanted to see him once a week until surgery. Everything checked out great. Dr. Wright was really impressed that I got his surgery up to this Friday. I told him that I just used profound language, which I NEVER do, especially to the medical staff. He was shocked, and said, "you're always cool as a cucumber". But, he agreed that when it comes to your children, you have to speak up.

Nothing else to report today. Here are some more pictures. I've been camera crazy since we got home.


Monday, July 14, 2008

Some more pictures from the weekend


Grandma Lou and baby

Just hanging out

The party was a little to much for him, sound asleep

Sitting up like a big boy, and lots of drool..

video

We had a great weekend

Here are some pictures from the weekend.  Ross' family was in from out of State, so we had some fun.




Daddy feeding baby boy




His 2nd cousin, Robin





Taking a nap at Great Grandma's house, then he pee'd on it.





Folsom Outlets parking lot...and no, he's really not driving.  =)





At the Folsom Outlets


I am still really upset about his surgery being rescheduled, but we are trying to have fun this week, and we are thankful that he is doing so well right now.  Although, the other day, his sats were ranging from 73-79%.  That's unusual for him.  He also has lost 30 grams in 3 days now.  So, I just called Stanford, our N.P., Raji.  She is contacting the surgical team, and Dr. Wright.  We already have an appt w/ Dr. Wright tomorrow, but she said he might need to be seen today.  Even though he looks good, we have to pay attention to even the smallest things right now.  Raji will call me back soon to let me know of the plan.

Friday, July 11, 2008

Back at home

Happy to be home

Pictures from Stanford

Going to Stanford


He loves this singing thing

     The stuff on his arm/hand is lidocaine in prep. for the blood draw

Waiting for the surgical team consult

Now Highly annoyed..

I'll make this nice and short, because I'm still really ticked off.  We are in Folsom!  Yep, no surgery today.  We checked out of the hotel when we got the call at 10am, saying there are no beds for him after surgery.  So, I was emotional, angry, and worried.  I told the P.A. that called me that I was really pissed off.  I don't get upset that easily, but this really got me heated.  Then, she said that Dr. Reddy was booked up next week.  So, I had to call his office and get another date.  The girl told me AUGUST 18!!!!  I said no that's unacceptable.  I was kinda rude.. I feel bad now, but it turns out it worked because she just called me and said July 18.  That's a little better.  He has to get labs again, poor baby.  The hospital people called me and they want to give us money for the inconvenience.  They will send us a check for hotel and gas money.   I didn't even ask for that, so that was nice.  Doesn't change the fact that my son has to get worse before surgery though.  I just really didn't want him to have to wait so long, and start to really NEED the surgery.  HLHS mom's will understand what I mean.  

Please pray that they will not reschedule his surgery for a THIRD time..

Kira

Thursday, July 10, 2008

Very annoyed...

I was at the computer when i got a weird feeling that Stanford called my cell phone to tell me that surgery has been cancelled......so, i check my phone. YEP, a message from the P.A. saying that there is not a bed in the CVICU at the moment. And, keep the baby on clear liquids until around 10am they would call us. WHAT?? The original instructions were to have breastmilk up until 1am, then clear liquids until 3am. So, that means that he would have no milk for more than 9 hours?!?! I don't think so.... I called the hospital operator to track down this P.A. that called. He didn't know how to help me so I called the 3rd floor and the lady gave me her pager number. I paged the P.A. She called right back, and i told her that was too long for him not to have any milk. She said, "oh, i'm sorry, i forgot to mention that he could have breastmilk up until 5am!!! She said, "i'm so glad you called, thank you..." Geeeezzzzzz, you think i'm not gonna question that? Anyway, their office will call us around 10am to let us know the plan.

This is so emotionally draining.....and I really hope that they do this surgery tomorrow. I cannot wait around here all weekend for more anticipation of his surgery. It's already been rescheduled last minute in June.

I'll update tomorrow...

Pre-op.

We JUST got back to the hotel from his pre-op appt today. We got there at 7:30am. We had to do the admit paper work, go to the heart clinic for a very long echo, then Dr. Murphy (my cardiologist, who is also a ped's cardiologist) came in to look at the echo, and talked to me a little about my own upcoming surgery. Then, we were told to get an Xray, labs, EKG. But, we had to be back at the heart clinic at 10am, no later for the consult w/ surgical team. So, we waited for the nurse to bring in the numbing cream for lil Ross' arm (for blood draws). She brought that in, and then we went to get his xray, but ended up waiting 45 minutes, and by then it was 10am, so we had to come back later.

We met w/ the surgical team, and they were very impressed w/ him. They just went over all the risks and bla bla bla that we've already heard....sorry, i'm tired, and Starbucks messed up my drink this morning so i didn't get my fix. =(

Then, we went to get blood work, and I'll just say, IT SUCKED!!!!!!!!!!!!!!!!!!!!!!!! Yeah, the numbing cream was great on the left arm, because the nurses applied it to the arm that has the best luck w/ good veins. So, he didn't feel a thing on the left side, even though they poked his arm and hand.......and no luck..go figure. So, they found a good vein on his right arm (no numbing cream), and he was NOT a happy camper. It was awful.

Now we're back at the hotel, and baby Ross is snoozing..=) I have pictures, but i forgot my plug in thing. My mom will bring it tomorrow so i can post pictures.

Wednesday, July 9, 2008

Here at Stanford

Well, we checked into Stanford Terrace Inn, in Palo Alto. It's a nice hotel. It's $169/night! And, that's a discounted rate! Anyway, as we were waiting for Dr. Reddy, we were told he was running behind in a meeting, so it would be an hour. Then, Dr. Hanley spotted me, and wanted to talk. He just explained that last time I met w/ him, he didn't have my MRI pictures. He was basing everything on the report. Now that my case went to conference, and he saw the pictures, he stongly wants the surgery done. I will be on the bypass machine (heart and lung machine), they will cut open in the front, and it will take 4-5 hours. Basically, he will remove the aneurysm, and then sew in a tube from one part of my aorta to the other part. I will have a normal life after this, and be able to have more babies. I asked him if I would be intubated, (tube down the throat). He said yes, and I will have that in for 24 hours after surgery. I will be heavily sedated, and wont know what's going on. The reason for this is because it's a major operation, and having worked on the aorta, I could have major blood pressure issues after surgery. Another risk is that my left vocal cord will be temporally damaged...just like baby Ross' was for a couple months. He said it would last about the same amount of time. The risk of death is near to zero! Pheww....I will have a chest tube, and will be in the hospital for 5-7 days. My date is September 5.

SO, then we met w/ Dr. Reddy, and he was so pleased w/ Ross' weight and how alert he is. He kept saying how good he looks...oh, and Dr. Hanley was saying the same thing. =) Ross' surgery is very straight forward, and he expects good results. This is news to me.....the time spent "working on the heart" is about 25 minutes!!! The most time is spent opening up the chest, and anesthesia. That's so crazy to me. But, the overall time will be 4-5 hours. His left pulmonary artery is not a concern to Dr. Reddy. He will just make an incision and then sew the other way, so it doesn't need a patch. It's hard to explain. And, he doesn't have to be on bypass! I'm really really happy about that.

Ok, I'll update tomorrow. Pre-op is at 7:30am.

Kira

Tuesday, July 8, 2008

Little Ross' physical

Ross had his physical yesterday with Dr. Warden.  He weighed in at 14 lbs. 15 oz.  He is 24 1/2 inches.  He is above the 50 percentile!!!!  Actually, Dr. Warden said "he's a little chubby, but that's OK".  I was in shock.  I told him that we were told these hlhs kids have a really hard time with their weight, and developmental skills.  But, not Ross.  He passed his physical.  He is developing normally for his age.  He is 17 weeks.  What a strong little guy.

We also started him on some baby foods.  He likes it now.  At first he was hesitant.  It's a new thing for him.  

I just got off the phone w/ the surgical receptionist.  She told me that his asprin has to be stopped a week prior to surgery.  Ok...it's Tuesday, and his surgery is Friday.  She said, "didn't you get our packet?"  No, I didn't.  Ugh...I've had some other issues with them in the past.  But, atleast the doctors know what they're doing.  But, it's ok, we will stop the asprin today.

We're off to Stanford in the very early morning to meet with Dr. Reddy.  

Sunday, July 6, 2008

video



His second time eating baby food!

Thursday, July 3, 2008

It's been awhile since I've posted!

Ok, so in March, I said I was going to post all updates on this new blog.  Well, I lied.  But, now I think I have more time to keep this updated.  So, I will try again to transition from using care pages to the blog.

Baby Ross is being such a good baby.  He is growing, and getting stronger everyday.  We are leaving for Stanford on July 9.  We will meet with Dr. Reddy to go over surgery details, and then July 10 is pre-0p and labs too =(....then July 11 is the big surgery day.  We have to be at the hospital at 5:30am!  Surgery is the first case, so it's at 7:30am.  I'm happy about him being the first case.  

The Ronald house is full, so we are looking at $65 per night at a hotel near by.  This will be expensive!  I don't know how long he will be in the hospital, but I hear that the best case is 5-7 days.

Here is a recent picture of baby Ross and Dr. Wright, (his cardiologist).  Everything is looking good!

Thanks for checking in on us!  

Kira

Baby Ross and Dr. Wright He got a walker!




Checking out his 2nd cousin, Ashley..