Dedication/Extra Surgery Info

Brandt with Nannie+Pa

We were so happy it worked out for Brandt to have his church baby dedication service this past Sunday, just before going in to have his next surgery. Acknowledging that our children are God's gifts and praying for Him to use them really helps put life's challenges in perspective... Brandt was of course oblivious to this momentous event, other than being fascinated with his new surroundings and determined to check out the guitarist standing behind Glenn. Oh and removing his hat (pictured above). Since we've really tried to keep him away from crowds and kids as much as possible recently to avoid germs, his brief time in the service probably seemed like an adventure to him. Glenn's Mom got him a cute little outfit for his special day, which was a good thing since I am not the world's greatest shopper and had not even thought ahead enough to plan such details!

He's been really cuddly and tired this week...no complaints from me on the cuddly part as I treasure the time holding and playing with him before he's back in ICU. Such mixed feelings as we dread seeing him go through this again, but actually look forward to being through this stage of repair and hope it gives him more energy and stability for his heart's development. A couple things the cardiologist who did his heart cath told us were encouraging...they will be able to close up his chest before he comes out of surgery this time. Also she explained that the amount of time in surgery will be comparable to the 1st surgery, but it's a less complicated procedure. For the most part Dr. Bradley will have to spend less time actually working on his heart, but it may take them a little longer to prep him and get him closed up because of scar tissue etc from the Norwood surgery. Does anyone else find it confusing, by the way, that the name of the second surgery is exactly the same as my husband's name?!? Anyway, here's a link again that gives a broad explanation of the bi-directional Glenn repair:

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

We'll be headed to Charleston Monday evening as he has to be at MUSC by 9am Tuesday morning for pre-op testing estimated to take about 6 hours. We will also be able to meet with the cardiology team during this time, so please continue to pray for wisdom for the doctors and for Brandt to stay healthy through the next couple days.

Big Surgery Week

Please pray for several of Brandt's little heart friends today and through the coming week if you happen to read this update. Evie went into surgery around 6:30 this morning for her bi-directional Glenn, the same procedure Brandt will have next week. Kaelyn is also currently in pre-op for her Glenn this coming Monday. Brandt's pre-op will be on Tuesday, surgery on Wednesday, and little Vance has surgery on Thursday! They are all just in my thoughts and prayers so much today, as Brandt's surgery looms close. We thank God for the skill He's given the doctors, and the healing He's granted these precious little ones that He loves so much more than we can even begin to imagine.

Happy Thanksgiving + Happy 6-month birthday to our little miracle baby!!

Home again--early!

Well Brandt continues to keep us hopping by exceeding expectations...almost as soon as I had completed my update regarding what they hoped to accomplish with the heart cath, one of the nurses showed up in the waiting room. They had told us they would page us once Brandt was awake, but she had already gone down to another floor where I'd had to store milk for Brandt. She asked us to hurry and come help her know how to warm the milk because he came back from the procedure already awake and wanted nothing to do with the pedialyte they'd offered him...that's our boy!

We had the best news possible as they found the pressures in his arteries to be very low, which means he's ready for the increased pressures from surgery number two. Also the arteries and shunt all continue to have a clear flow, which the cardiologist performing the cath indicated will contribute to a smooth Glenn procedure as well. So this is another hurdle we are through, and just praising God for continuing to heal this sweet boy.

They kept him for observation 'til around 3:30, and the biggest challenge was keeping him still for two hours to prevent bleeding. He finally slept a little and ate a little, but was really exhausted and slept for 12 hours once we got him back to the house where we were staying in Charleston. We had prepared to spend a couple days there just in case he had to be admitted, but after getting together with some dear friends for lunch on Friday, we headed home and are happy to be back with our whole family. Next stop...surgery #2!

Brandt got done early--around 10:45--woke up and wanted 2 eat! All is well+sats look good for surgery Dec 8. In recovery now...

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