5pm update

Hello,
Braden is starting to "come around" a bit. He's still pretty ticked off at us for bringing him here. He took comfort in our arms and was able to sleep a lot today while holding him. He just ate for the first time today, and guzzled a generous 4 ounces. As for meds, he still on one of the heart meds, Milrinone. He's also on an anti-clotting med, Heparin. They have been giving him an IV form of ibuprofin for his headaches and a little morphine here and there for pain. They also have him on antibiotics as a precaution for any infection that may arise. His blood pressure goes up a bit when he's ticked, but it's been pretty stable without meds. Overall we're pretty pleased with his recovery. He's one tough cookie and a little stronger than the nurses would like him to be :-)

God is listening to our prayers - thank you for all of yours.

Love,
Steph and Rich

11/30 Update

Braden is partially resting right now. He was pretty fired up most of the night by the sounds of it. They are trying to keep him quiet and sedated for the most part with morphine and other drugs. He more than likely has a headache and is understandably sore from the surgery.

We will be able to hold him today and feed him this afternoon. They hope that will help calm him down a bit compared to continuing to pump him full of drugs.

He is doing very well other than the agitation though.

We will update throughout the day.

Thanks,

Rich

Out of Surgery!!!!!

Hello,
Well, we just saw Braden. They wheeled him past us, and we were able to give him a kiss before they settle him into his PICU room. He's extubated....yeah! Dr. Tweddlle, Braden's surgeon, came in and spoke with us....everything went well. The first few days of recovery will tell us more.

Thanks for letting us lean on you once again....you have helped us get through another stressful day.

Much love,
Steph

Surgery Update

Hello,
We just got another update....surgery area has been hectic today, so the updates have been scarce. His cardiologist actually just came in as I started typing. The actual surgery part is over and all went well. He is off bypass already (the heart/lung machine that pumps his blood outside of his body while the heart is worked on). I guess his heart was a bit sluggish when coming off bypass. It will take another hour and a half to finish things up.....make sure there's no bleeding, close him up, take breathing tube out, etc.

We just met another family whose kiddo is having the Glenn as well. It's actually more of an emergency Glenn....one that almost cancelled Braden's surgery today.

We'll continue to post as we know more.
Thanks for surrounding us with your love, support, prayers, and positive thoughts. We're holding up pretty well.
Steph

Here we go again.....

Hello,
It's 2pm and they finally just came and took him. He was such a good little boy while we patiently waited. One of the chaplains came by to give Braden a blessing and prayer before he was taken to surgery.

We'll continue to post as the surgery progresses.

Thank you for thinking of us and keeping us in your prayers,
Steph and Rich

5 pm - everything is still going well, removing scar tissue that was left over from last surgery

Surgery Time Change

Hello again,
We got a call from Dr. Tweddell's office tonight. There was a miscommunication between their office and the pre-op dept. Braden's surgery will be closer to noon tomorrow, not 7:30am.

Steph

Pre-op and Check-in

Hello,
Braden was such a good boy today for his pre-op visit. He had blood work, an X-ray, and EKG done today to get him all set for his big day tomorrow. Surgery is scheduled for tomorrow morning at 7:30am. From start to finish, it should be around 6 hours. I guess the repair of his heart won't take long at all....it's all the leg work before and after that will take up most of the OR time. After this surgery, the docs say his heart will be "happy", because it won't have to work as hard with the re-routing they will do. He will, however, probably experience what they call "Glenn headaches." Re-routing the blood flow causes pressure changes in the body, so he will be a bit cranky and not himself the first few days. Some positive news....his chest will be closed after surgery and there's an excellent chance he will extubated right after surgery as well.

My mom, Braden, and I are all checked in at the RMH....Rich will come after his b-ball game. This is Braden's first sleep-over. I feel like I packed the house!

As tomorrow nears, I can already feel God's arms wrapped around us. Thank you for your prayers and positive thoughts. We will post throughout the day tomorrow to update everyone on how the surgery is going.

Love,
Steph, Rich, and Braden

Monday

Hello all,
We are taking big, deep breaths as the surgery date nears. We know he will be in excellent hands, but it will so difficult to "let go" of him again. Please continue to keep us in your prayers as we prepare our brave, little man for another "meeting" with Dr. Tweddle.

We attached a photo collage of Braden. We had a photographer (Kim Youra) come over on Saturday to capture some great moments of Braden. Since he can't quite decide if he's a Packer or Bears fan yet, we decided to play it safe and put him in some baseball gear :-) Enjoy!
You can check out Kim's business at www.kimyouraphotography.com

Love,
Steph, Rich, and Braden

Happy Thanksgiving

Hello,
We have so much to be thankful for this Thanksgiving. We thank God everyday for blessing us with our precious Braden. We thank Him for keeping a safe watch over Braden these past few months while he was at home us, "beefing" up for his next surgery. We thank Him for continuing to bless us with so many wonderful people in our lives. Family and friends have comforted us in so many ways. You have all helped us maintain our strength through some of the roughest roads traveled. We will lean on you again as we face this next challenge with our son.

Please pray that God continues to grant CHW's medical staff the wisdom and knowledge they will need to take good care of Braden in the weeks (hopefully only 1-2 this time) ahead. We ask Him to grace us with his presence before, during, and after Braden's surgery.

At this time, we would also like to wish the VanLandShoot and Trombly families a big congratulations on their beautiful new addition, Jacob James! We pray that all is well Jacob and that you return home soon to enjoy your precious baby boy.

Happy Thanksgiving!
Love,
The Petska's
PS....here's a pic of Braden with his O2 Cannula, lounging in his Bebe Pod chair

Bi-directional Glenn

Hello,
Some of you have been asking and wondering what will all be done with Braden's next surgery. Hopefully we can simplify the explanation without confusion. This next surgery is called the Bi-directional Glenn.

Normal Heart Function:
Right Ventricle's Job - take in deoxygenated blood from the body and pump it to the lungs to get oxygen.
Left Ventricle's Job - take in the oxygenated blood from the lungs and pump it out to the body.

This entire 3 step surgery process will eventually re-route the blood flow, allowing Braden's right ventricle to do all of the work of the left ventricle. The right ventricle will no longer have its original function. The Glenn (surgery 2) and Fontan (surgery 3) will "block off" the blood flow to the right ventricle and send it directly to the lungs instead. Sending the blood directly to the lungs will allow the right ventricle to take over for the left ventricle.

More detailed explanation:
Unoxygenated blood is brought into the heart by both the superior and inferior vena cavas. The Glenn surgery will take the blood coming in through the superior vena cava first and adjust the blood flow so that it goes directly into the pulminary arteries. The pulminary arteries will then take the blood directly to the lungs. In his final surgery (the Fontan), a shunt will be placed so that the blood flow from the inferior vena cava can be brought up to the pulminary arteries, so it too can send the blood directly to the lungs.

Hope this helps,
Steph
PS....I know, I know......a visual would help, but this is all we can do for an explanation on the blog :-)

3 Months Old Today!!

Here are some latest pics of our growing boy (12.5 lbs).

Update

Hello all,
Just writing to update everyone on the latest with Braden. We went and saw Dr. Cava on Monday for a follow up appointment. His chest X-ray looked great, so his right upper lobe has opened back up :-) Dr. Cava was a little concerned with Braden's O2 sats and wanted us to start monitoring them at least 3 times a day. If they were consistently below 75%, he wanted to know. Well, they've been fluctuating between 70 -78%. After speaking with his nurse today, Dr. Cava wants Braden to be on a little bit of oxygen up until time of surgery. The medical equip. guy has already come by and delivered the O2. We're a little bummed that he has to be on O2 now, but we know it's for the best. Surgery is still set for November 29th. We'll post if anything changes.

Thanks for checking in on us,
Steph

Going Home......

Hello,
They just finished doing rounds. His chest X-ray from this morning showed some improvement with the right upper lobe and his sats have been behaving....yeah! It looks like we'll be out of here in an hour or so...hopefully! Thanks for continuing to think of us every step of the way!

Love,
Steph, Rich, and Braden

Wednesday's Update

Hello all,
Braden is doing much better today. They did a chest X-ray on him this morning (not the best thing to witness as a parent), and it looks like the upper right lobe of his lung is collapsed. They've been doing some breathing treatments to try and open it back up. His sats have improved, so the breathing treatments have helped some. The lung collapse is due to him being put on the breathing tube for his heart cath. The intubation/extubation process was a little more than his little body and lungs could take. They want to keep us here one more night (hopefully). Braden may have to go home on oxygen, and it's very typical for HLHS kiddos to have to go on oxygen before their Glenn (2nd surgery)....we're reallying hoping that's not the case with Braden. Dr. Ghanayem came and spoke with me today.....surgery 2 is scheduled for November 29th.


That's all. I'll post later tonight/tomorrow with another update.
Love,
Steph
PS...this pic was taken by Auntie Marci during her visit with us this past weekend.

Tuesday Evening Update

Hello,
Well, it looks like we're staying another night. Braden's sats are not behaving. When without O2, his oxygen saturation is in the low 70's. When he gets mad, they go into the low to mid 60's and take their sweet time getting back to the 70 mark. SO, he's back on oxygen until he can get his sats back into the high 70's/low 80's. For those of you who don't know what in the heak I'm talking about......oxygen saturation is the amount of oxygen in your blood. In a "normal" heart situation, a person's oxygen saturation should be pretty darn close to 100%. In Braden's case, they like his O2 to be in the mid to low 80's. Eventually, after his 3rd surgery, his O2 saturation should be in the mid 90's.

When asking the "experts" why Braden's sats aren't behaving, they say it's typical for a kiddo between stage 1 and 2 of the HLHS surgeries to experience this. He's getting closer to his 2nd surgery, so his sats tend to drop a little AND with the stress of the heart cath. yesterday, it's a double doozie.

Our thoughts.......frustration. We're praying that another overnighter here will whip those O2 sats into shape. Please keep us close in your thoughts and prayers.

Thanks,
Love Steph

Tuesday's Update

Good morning,
Braden seems to be much more comfortable now. He finally pooped this morning, so that has helped with his comfort level. His belly was so bloated, and he was so uncomfortable all night. He would sleep only 10-15 minute intervals and wouldn't take anything to eat. He seems more himself now and is sleeping comfortably as I write. I'm not sure when we'll be able to leave today. A few things need to happen first: he needs to eat and be weened from the oxygen. He's almost to room air, and his sats are behaving better this morning, so hopefully he'll be off the O2 soon. I'll keep y'all posted. The docs or PNPs haven't stopped in yet this morning, so I may know more after talking with them. According to the cardiologist who did his heart cath., it looks like Braden was just a little over-sensitive to the anesthesia, leaving him uncomfortable and feeling yucky! Hopefully we're over the hump and it will be smooth sailing from here.

Love,
Steph
PS....the nurses who took care of Braden couldn't get over how big he is getting. He got a few of his favorite nurses to come and visit him last night....he's quite the little charmer :-)

Braden Update

Well, Braden's heart cath. and echo was moved to today. We found out Friday that there was an opening, so we took it. The heart cath. was a bit more invasive than we thought (or had been prepared for). It's a surgical procedure, so he got anesthesia and was intubated. Everything looks great. His pulminary arteries look great, and there is no narrowing of his shunt or the area around it.....all great news. Although all is well with his heart, his body is still recovering from the anesthesia. He's feeling yucky, quite cranky, and his O2 sats aren't cooperating. So, we're staying the night! Right now he's on IV fluids, a titch of oxygen, and is being monitored (heart rate and O2 saturation).

Well, I must sign off now. I'm staying in Braden's room with him tonight.....looks like furry teeth and bed head for me as I was not prepared to stay the night. Actually Grandpa Harvey hooked me up with a t-brush, t-paste, and comb. Thanks Grandma Lois for staying with us all day :-)

Good night,
Steph

Check-Up Update

Hello Everyone,
Yesterday went well with the doctor visits. We found out at the pediatrician that Braden's growth is right up there within his age bracket (50th percentile). We were very pleased to hear the news. He got his first RSV synage (shot) yesterday. This will help protect him from one of the many nasty cold viruses this winter. He will receive a shot every month until April. Preemies and kiddos with heart and lung disease are top priority for receiving such shots. The doc also noticed a few bumps on his lower gums.....looks like Braden could be teething already...we shall see :-)

We went to Children's and found out that Braden didn't need an echo on his heart just yet. He is now scheduled to have an echo and a heart catherization (sp?) on November 13th. Both of these will give the doctors a clearer picture of how Braden's heart is functioning and how good the blood flow is through the heart. Dr. Ghanyem was very happy to see that Braden is putting on good weight. With this in mind, she wants to push the surgery ahead a little. She actually gave us a choice....before or after Thanksgiving. If the echo and heart cath. on the 13th show that Braden's heart is a-ok, we're opting for the week after Thanksgiving. If the echo and heart cath. show otherwise, then the surgery will be scheduled before then.

We couldn't be happier for Braden's progress. It's always great to hear such positive words when we visit the doctors. Thanks for continuing to keep us in your thoughts and prayers.

Love,
Steph, Rich, and Braden