Wednesday, November 30th, 2011 at 8:46 pm

We made it, again ;o) . The flight coming home was a little more stressful than the flight leaving home. Seems like it should’ve been opposite since we came home with a heart on the mend rather than leaving home with a broken heart. On the flight to Boston we had Bronson hooked to the portable oxygen and ready to flow, along with a portable pulse oximeter that gave a constant reading of his O2 saturations. Dr. T assured us that he did not need oxygen for the return flight and suggested that if I insisted on using the pulse oximeter that I check my own oxygen saturations :oD ! I reluctantly abided to Dr. T’s assurance, and remained stressed the entire flight. Eric even traded seats with me so that I would quit obsessing over how blue I thought Bronson looked. He only saw pink. Needless to mention that by the time we landed in Phoenix, my “blue” goggles were seeing pink also! Amazing how stress distorts reality. The story provides for a fun laugh anyway.
I’m sure everyone can imagine, it’s GREAT TO BE HOME! Not just home, but home with Bronsonator’s heart on the mend. I previously noted in a prior post that due to him being on heart and lung bypass that he lost all of his immunity. We are also in the height of flu and cold season. Both of these factors equate to continued isolation from public places, crowds of people, and limited exposure to visitors in our home. It will always be a life long necessity that he avoids sick people when possible. We have plans to start the “Tour De Bronson” around March. Meanwhile I will keep all of you entertained with continued pictures and important news as it develops. Below are pictures from our last few days in Boston. ENJOY!
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Dr. Tworetzsky and his Nurse Practioner, Terra holding Bronson
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” I just know I can fit both of these pacy’s in there”
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a view of the main stairs in the Yawkey house
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a stroll by the coast
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a view from Brookline of downtown Boston
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a view from across the street of the hospital
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the common area in the house
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a view from the common area down the hall to the guest rooms first floor
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big screen TV in the family room
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looking into the play room
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looking into the family room
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the common room looking at the public use computer
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a view of the quiet room from the common area
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the Bronsonator hanging with another heart hero, Isaac
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view from the parking lot of the the house
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Ronald McDonald house next door
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view from inside the car of downtown Brookline
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******************More pictures in the “Just Pictures” page ***********************
Tuesday, November 29th, 2011 at 3:31 am
We are all packed up and ready for take off. With a “crazy o clock” wake up at 3am Boston time tommorrow, this post will be brief followed by an even more brief snooz. It’s 10pm here. I attribute this late night to time spent with heart friends and an esophagea friend (esophagea atresia), sharing stories, laughing, and noting grattitude that we’re all here together and can relate and support eachother through our journeys. I might just mark the Yawkey Family Inn as our heart home away home. Though we’re leaving tomorrow, we’re taking with us new friends who have children that are truely heroes.
Bronson had his last appointment with Dr. T today. His chest x ray still looks super, which means his lungs are dry. We will follow up with his cardiologist in Phoenix within a week. The plan from here is to monitor his left ventricle and pray for growth without any high pressures from the patch that Dr. E used to make the hole between his top chambers smaller. We have the long awaited picture with Dr. T and his nurse practioner Tera holding Bronson. Stay tuned! I will post the pictures along with some from the last few days, when we get home. Thank you for sharing this part of our journey with us. I will update again from HOME!
Friday, November 25th, 2011 at 3:30 am
We had a super full of food Thanksgiving! A group from the community came into the house and cooked a large breakfast very early this morning, so early that we missed it. Fortunately, another group came in and cooked a Turkey feast. We filled ourselves to the brim with turkey, mashed taters, peas, squash, gravy, pumpkin bread, rolls, cranberry, about ten pies, and some custard cups. There is so much food that we had thirds and fourths for dinner and will have left overs for the next few days. We are very thankful for the other families here that we shared our day with. Bronson charmed the ladies and entertained the group. Another mom who’s baby will be in the NICU until she’s six months old, was so enamored with the Bronsonator that she took about 50 picutres of him. I keep thinking we need to send him to Hollywood :o). The Lord has blessed us in so many ways that we are very grateful for. The doctors who have the skills and dedication to mend hearts with congenital defects. Everyone at Eric’s job including the company owners and his direct boss who have been supportive of him being here. The management at my job who have made plenty of exceptions to secure my job while I take care of Bronson. Our family who have been significantly supportive with getting us here. We wouldn’t be here without each of their individual contributions. Finally to ALL of you who have devoted your hearts, minds, and prayers for Bronson as he conquers these open heart surgeries. We hope everyone had as wonderful of a Turkey day as we did!
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just waking up
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Bronson charming the ladies at the table
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Ella… in a turkey coma the food was so good!
^^^^^^^^More pictures have been added to the “Just Pictures” page^^^^^^^^^^^^^^^^^^^^^^
Wednesday, November 23rd, 2011 at 2:18 am
Sunday, November 20th, 2011 at 5:23 pm
Saturday, November 19th, 2011 at 3:17 am
While there was no actual sugar given to Bronson, there were two very loving parents providing more than enough “sugar” to get all the medicine down. Bronson is definitely taking his fair share of the meds. He has moments where he doesn’t like it, but I will tell you he sure does come up smiling more times than not.
He truly is a fighter. So much of a fighter that he has graduated and is taking his medicine by mouth. This is a very good sign as this transition typically when babies are being prepped for release! He still needs to be monitored pretty closely at this time, and I think Eric may have a night cut out for him (nothing he can’t handle); however, there is a lot of good talk happening around here!
As I type this the nurse is commenting to Eric and Tab about their strong baby. I have heard a few times today that this may be one of the hardest days he has had, and I will tell you that it is nothing compared to what I expected before I arrived this afternoon.
Thursday, November 17th, 2011 at 11:21 pm
“Let us therefore come boldly to the throne of grace, that we may obtain mercy and find grace to help in time of need.” (Hebrews 4:16
This seemingly perfect path to recovery can take a turn in a heartbeat (pun intended.) Last night both me and Eric were sitting right next to Bronson’s bed updating the blog, actually. Eric happened to look at the monitor and saw Bronson’s O2 saturations dropping into the the low 60’s. The alarm wasn’t ringing, so I knew our nurse, nor anyone at the desk wase aware. If they were aware they would’ve been in here as fast as they were when I made them aware. He dropped as low as 56 and quickly came back to his baseline of high 70’s with an oxygen boost over what he’s already on. It was a quick episode that was resolved almost as fast as it happened. I stepped out of the room mostly to give the team space and let them do that voo doo that they do without the stress of me being stressed. There was a repeat episode later lastnight after I left to go sleep at the house. Eric was here through the night and he said it was resolved so quick that he slept through it! He’s obviously a sound sleeper. We’re not sure what the cause is, however, a little tweek with his diruretic and a breathing treatment has seemed to be successful. Today has been almost a typical Bronson day. He’s still very prompt at waking every three hours for a feed, peeing ALOT, which we need him to do so his lungs can function appropriately and we read to him. He was alert and showed some excitement with the pictures. Now we just need his bright, beautiful smile and we’ll be even more on track. Pictures from today below.
Thursday, November 17th, 2011 at 2:37 am
The ICU team and step down team are all in awe with how fast Bronson is recovering. He was extubated last night and moved from the ICU to the s “step down” (recovery) unit before noon today. There WAS NO FEEDING TUBE! He immediately bottle fed 2oz post extubation. All of his wires and chest tubes are gone. He just has an IV line in his foot for medications and drawing blood. Boston likes to pull lines and tubes as soon as they can to prevent infection. I’m sure this is why they have a superior rating for hospital infection prevention. ;o) Despite the pain medications, the Bronsonator has wasted no time unleashing his personality. He was crying in protest that we immediately remove his wet diaper. He has no tolerance for wet diapers. His internal “bottle clock” that alarms promptly every 3 to 3.5 hours is back in full force with no mercy for lag time. Now we’re just anxious to see that “big ole boy” smile of his. We will share it when we get it!
Dr. Emani came by to see him before he left. He just covered the modification for the left ventricle rehab. The “muscle that wasn’t” that he found and detached from the wall of the heart doesn’t have any muscle fibers to support growth. So he cut the muscle down the middle with the expectation that it has a 70% chance for regrowth. Now we pray for that 70%! Dr. Tworetzsky, the cardiologist came by too. He assured us that even though Bronson is having such a fast recovery, that they won’t be letting their guard down and will still be watching him closely. This is very comforting. Below are some pics of his progression from ICU to him sleeping currently, post 4.5 oz of breast milk via bottle.

Wednesday, November 16th, 2011 at 2:20 am
I am not saying this because I am in need, for I have learned to be content whatever the circumstances. I know what it is to be inneed, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do everything through him who gives me strength.
The Bronsonator has made a mark for himself again. Throughout recovery of his first surgery, the staff kept commenting that he’s a fighter because of how hard and how much he kicks. The staff here told us they’ve been talking about how active and strong he is. He’s still intubated yet manages to wiggle his way down the bed so his nurse keeps putting him back at the top. She had to put him on his left side today to promote drainage of fluid from his left lung. He wiggled and kicked until he was lying on his back. They already pulled one of his primary lines (the central line) and his urine catheter. He’s been breathing over what the ventillator is pushing so they are confident that they can extubate him sometime late this evening.
God’s grace and mercy is abundant in our lives! It’s a blessing to find peace and happiness in what could be a very disheartening journey. Both me and Eric had significant anxiety to see him post op because we had images of his last surgery. Boston has such non invasive procedures so instead of his breathing tube looking like a thin pvc pipe coming out his mouth, he just has a small tube that I didn’t even notice. I had to ask where the breathing tube is! So that we could smile and feel relieved that he looked much better even though he still has alot of wires and three chest tubes, is one of many blessings that our amazing Lord has given us though this. He knows his plans for Bronson and I believe it is my duty to continue to live through this with a grateful heart always trusting in him. I’ve learned and expect to continue to learn repeatedly that faith drowns in fear and that fear will only make it harder for Bronson to find joy in his life. We are proud that he was recognized as being a very happy baby by everyone who met him here before surgery. I also believe that when he hears us laugh, talk, and read to him with a positive tone that it will only promote a fast recovery. I can’t emphasize enough, how much it helps to see your comments on here and FB and watch the support pour in via fb, text, emails, calls, etc. Below are pics of what he looks like currently. They can seem devastating but we are content with how good he looks.
The other pics are from pre op before we handed him over:
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checked in and waiting to be called for vitals
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we have his first drunk picture
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off he goes… drunk with his O.R. nurse
Tuesday, November 15th, 2011 at 3:42 am
Blog by Proxy-Told to me by Tab written by Michael
After 11 hours of surgery he looks better then expected. We were actually relieved to see how good he looks. We met with Dr. Emani very briefly and you could see he was exhausted. He gave us a quick review and basically said Bronson did great and that he is still very optimistic that the left ventricle will grow. The modification he did to repair the left ventricle is is a lot more mild then he planned. He is still intubated and it is their goal to extavate (‘scuse any typos or words that don’t make sense, I am doing this for them over the phone) It was long and everyone’s prayers, and communications really helped make today a lot more bare-able. Please pray for a quick recovery with no complications.