Heart Cath Today

We are @ MUSC for Brandt's heart cath...will probably not know results for 4 to 5 hours.

We got in to Charleston late last night. Brandt was NOT a happy camper on the trip here, and wanted to eat right up until his midnight deadline last night. But he was back to his happy self this morning until about 7:15 when he started to howl for food. Glenn actually did a better job holding him--since he thinks Mommy means food--until they took him back for anesthesia around 7:45 or so. The dr and anesthesiologists explained he would have general anesthesia and be on a vent during the procedure...I was thinking he got to have more sedation for this kind of testing, but it's always reassuring to talk with the excellent staff here regarding their procedures, since they have it down to such a science.

So they completed an echo and then will inject dye to take movies and detailed pressure readings which can confirm he's ready for the second surgery. The heart cath should take about 3 to 4 hours and then they will observe him four to six hours to make sure he recovers without bleeding or problems eating. As long as they don't encounter anything unexpected he shouldn't have to spend the night. I guess sometimes they find narrowing that they can fix with a balloon, in which case they will keep him longer.

10:30am We heard from the cath lab they have completed the echo under sedation, gained access and are working on the cath and saturation readings...

"Blue" Week

Just want to let everyone know that Brandt has had several "blue" episodes and more difficulty than usual with breathing this past week. We thought this was mostly from a head cold and some very minor congestion, but when we went for his RSV shots his sats had dropped down to the 70s. His oxygen had been running in the low 90s, which was very good. The pulmonary dr. gave him some oxygen for a short time and paged Brandt's cardiologist, who was able to come take a look at him.

He explained any kind of change for a baby with limited oxygen saturations can cause dips like this, and agreed that the head congestion is affecting his breathing. His sats came back up, and since that time have just been fluctuating up and down. We had a follow-up appointment on Monday to make sure no further treatment is needed before his heart cath in Charleston, and his shunt and lungs remain clear. Dr. Raunikar feels that these "blue episodes" are indicative that he is outgrowing the first surgery and that we are right on track for the heart cath next week. In a way, this development is encouraging because when he was doing so well and staying so stable, it's really hard to feel that he's ready for that next surgery. Now, while we still dread what he will go through in the next few weeks, we are SO THANKFUL that the time is close to go forward with the next repair.

Here's a link with a very concise explanation of the repairs for hypoplastic left heart syndrome, if you'd like to understand a little of what Dr. Bradley will be doing for Brandt during the bi-directional Glenn procedure...

http://pediatricct.surgery.ucsf.edu/conditions--procedures/bi-directional-glenn-operation.aspx

Next Surgery Date

Hello all: just wanted to let everyone know we have a date for Brandt's next surgery--it will be December 8th, contingent on continued stability of his heart and lung stats, and the results of the hearth catheterization. The heart cath will be November 18 in Charleston, and I will plan to post results from that but probably not much else between now and then. We plan to enjoy every minute of holding and cuddling this little fellow as much as possible between now and then. We also plan to restrict his outings from the house due to the high risk involved during this flu season. In addition to his other regularly scheduled appointments I'm hassling with pulmonologist, insurance, pediatrician, and pharmacy departments to get his RSV shots scheduled--once a month throughout the flu season. This virus can be fatal to babies in general, but in particular to those with weakened heart and/or lung conditions. So our blessings and challenges continue, but without much change from week to week right now...we so appreciate everyone's continued prayer for this amazing little guy, and I will start the updates again when we have something more to report!

Scheduling Second Open Heart Surgery

Lovin' the Fall Sunshine!

What a weekend...week, whatever. In addition to Seth's surgery, Joel managed to scratch or cut his eye somehow. By Sunday I was going crazy from doling out meds and trying to encourage crying children. Glenn was very kind to watch all three of the invalids while I went to church, which was a big lift to my spirits.

I was hopeful Joel's eye was better, but Monday morning he was still having trouble opening it. I knew it would be a challenge to get him to the doctor and still be ready to take Brandt to the cardiologist. But I must say a huge hoorah for family...both my mom and Glenn's family are always so ready to help, and so after Joel's appointment and finding out his eye was most likely bruised and possibly lacerated, I dropped him at Glenn's parents and then picked Glenn up to head to the cardiologist office together.

Dr. Raunikar and his staff are just amazing...he took quite a bit of time going over different options and scenarios with us. Of course there are no guarantees in life, ever, and certainly not when dealing with half a heart being repaired to function as a single ventricle. But all in all, Brandt's condition is above average as his oxygen saturations and blood pressures continue stable. His echocardiogram did not show any change in the valve leakage, and so contingent on his heart catheterization results in November, Dr. Raunikar has requested a surgery date in early December for the bi-directional Glenn procedure. This will remove the shunt and create a direct path from for oxygenated blood to travel to the lungs from Brandt's pulmonary artery, if I'm understanding correctly. The heart cath will show if his lungs are developed/mature enough to support the new circulation without the current shunt. As far as growth, Brandt also stayed exactly at the 5th%, although Dr. Raunikar wants to me to continue to supplement his diet with formula whenever he's taking a bottle--it certainly won't hurt him and as before, we don't want him to be verging on underweight as he faces his next surgery.

While I know I expressed frustration to more than one person this past week about being sick of doctor visits, the flip side of that is we are so thankful for the amazing medical care available to us here, and doctors who genuinely care and work to help us make the best decisions for Brandt and our family!!

Pediatric Visit/Seth Surgery

Well Brandt endured another round of immunizations this week. Weight was 11lb 10oz @ the pediatrician's, but he'd had a rough day of projectiles right before, and is still tracking consistently, so his doctor was fine with that. We also discussed the options for physical therapy, and while he can see some of the muscle tone issues the doctor in Charleston pointed out, he feels it's normal lag for what he's been through. We're going to hold off on any more (PT) appointments for a couple months and see how he's doing by his 6-mos check. They were not able to give him the vaccine for RSV as I thought they had said they could, but hopefully we can get that scheduled with his next cardiologist appointment since that's yet another medical office we'll have to visit once a month throughout the winter/flu months.

Seth was scheduled to have a skin and gum graft completed today on top of everything else going on right now. He had a tooth with an exposed root that had already begun some bone erosion. The doctor was going to at least clip the frenulum so the gum would not pull away any further. He was not sure how Seth would do for him to take the gum from the roof of his mouth and graft it at this age, since he's too young for general anesthesia. But he did want to prevent any further bone erosion and it had to be done before he could get braces, in any case, so I was thrilled that Seth did AMAZING to sit still and quietly enough for them to finish the whole procedure. Now we'll have the fun job of keeping him quiet for two more weeks, ha! Those of you who know Seth realize that his name is an antonym of quiet:-) But he's definitely growing up, and I was thankful to be able to watch the procedure and better understand what the doctor was trying to accomplish. I never thought I had the stomach for this kind of stuff, but love for your child can really be a great motivator...we have certainly seen that more than once this year!

4 months old!

Laughing during diaper change

Amazing to think that 4 short months ago, no four LONG months ago--take your pick--we were awaiting little Brandt's arrival. Both with great anticipation and trepidation. And he is such a precious addition to our family life, what a little love. We all vie to get his smiles and laughs. Anyway, he's had a great week with probably the least amount of reflux since we brought him home, so encouraging. He weighed in at the cardiologist 11lbs 8 oz, so he's put on over a pound since his last cardiology appointment. This was also our shortest visit yet, as everything continues stable...next week is 4 mos pediatric appt and he will start his RSV vaccine regimen. These additional shots are highly recommended for any babies with heart or lung problems, and he'll have to have 1 per month through probably March of next year.

Cardiology/High Risk Clinic Appts

Well the last couple weeks with Brandt have been very challenging as he's struggled with head congestion and had more than normal reflux episodes. Plus he seemed sleepier than normal and lack his normal good appetite, so I was really glad we had a scheduled cardiologist appt and echocardiogram on the 9th. He hadn't gained much weight--10lb 14oz-- but everything continues stable...no additional valve leakage, no narrowing of his aortic arch, strong function for the shunt and right side of his heart. Glenn and I both will meet with Dr. Raunikar the beginning of October for an overview of the heart catheterization and second surgery, the Glenn procedure.

We also went back to Charleston on Tuesday Sept 14 for Brandt's first high risk follow-up clinic. Basically a doctor examined him to determine if the open heart surgery and recovery have caused developmental delays. From here on we will attend these clinics locally, but they recommended this first one be done at MUSC where they have been following him and monitoring his condition so closely until the second surgery. The doctor's main concern is possible lack of muscle tone...they have recommended a second analysis by a physical therapist. She felt his torso muscles were weak and his fists too tightly clenched as when babies are first born. But Glenn and I both felt that a 10-minute exam after a four hour car trip isn't really an accurate reflection of his true "muscle tone" and aren't concerned. Of course they also want him to gain more weight. Even though he weighed in at 11lbs 1oz for the first time, he is hovering barely at the 5th%. The doctor also mentioned seeing a nutritionist, which is something to consider.

While I'm sure physical therapy can't hurt, neither the cardiologist here nor the pediatrician have noticed significant delays, and they see him much more often. So a lot of driving, but we are thankful they want to see him grow and develop as strong as possible...and we got to see some of our friends on 7C, meet another heart mom I had e-mailed but not met in person previously, and catch up with Melissa our dear friend with Cross Bridge Ministries. Her little guy Mason just got to move to 7C! The surgeon's assistants were also available and it was great to visit with them and show off our sweet Brandt. Time well-spent!