Archive for November, 2011

Hellllooooo HOME!

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!

 ******************More pictures in the “Just Pictures” page ***********************

Friends through heart

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!

 

GOBBLE GOBBLE

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!

 

^^^^^^^^More pictures have been added to the “Just Pictures” page^^^^^^^^^^^^^^^^^^^^^^

 

Back at the Inn

 Psalm 98:1 Sing to the LORD a new song, for he has done marvelous things; his right hand and his holy arm have worked salvation for him.

It’s been two days since Bronsn’s discharge and it’s felt like a week! The late night “partying’ with the nurse’s has rocked ALL of our sleep patterns. Last night we were up the entire night trying to get him to sleep. We finally conquered his sleep feat around midnight, only to wake again at 2am and start over. It is at least to our advantage to all be in the same room to retrain him to sleep through the night. For our sanity, we hope to defeat this very minor setback by the time we leave. Our time has been spent lounging here at the Yawkey Inn enjoying the Bronsonator’s smiles and giggles. Sunday night a local group brought 3 large trays of veggie lasagna with some sides to compliment so we socialized and met some more families. Last night I reheated the left overs and made some fresh steamed broccoli and put it out for all to endulge, again. We met some more families that missed the first serving on Sunday.

We had our first post sugery cardiology appointment with Dr. Tworetezsky. He showed us the live images from the echocardiographs (heart ultrasound) from pre surgery and post surgery. The mitral valve is already showing positive movement from the blood being pumped through the left ventricle due to the smaller hole (where Dr Emani put the patch) between the top chambers.  His lungs look perfect and his O2 saturations are where they are expecte to be. All GREAT NEWS! We have our final appointment next Monday, before we leave on Tuesday. I gave Dr. T notice today that there will be a photo shoot with him and Bronson at the last appointment. He said he’ll be sure to get his hair dyed for the event :oD ! As always, I’ve added some pictures. Some are from his appointment today.

Thank you, mom, Rhonda Deines for the todays Bible passage. It’s perfect for “Expecting Miracles”.

MOVING OUT!

We’re waiting to see the nurse practioner for discharge! Bronson came in here and flew through this surgery leaving the medical team in awe. We are BLESSED! He now has single ventricle circulation which means blood flows through his lungs passively instead of being pumped from the heart. We have until his 3rd surgery, in about two years for his left ventricle to rehabiliate for the bi ventricular repair. If the left ventricle doesn’t rehab then he will get the final surgery to complete the single ventricle circulation. PRAY FOR A MIRACLE that his ventricle rehabiliates. He has two more clinic visits with Dr. Tworetezsky before we can fly home. We’ll be leaving the 29th. He’ll still be in isolation to protect his immune system. It’s still weak from being on bypass and we’re in flu season. “Tour De Bronson” will likely be in March after flu season.

These last two days have been busy. Bronson has had some late nights out at the nurse desk entertaining and socializing because we was restless. Last night was my shift and his nurse took him for a cruise through the halls in a stroller. Even though he’s done with being poked, cuffed for blood pressures, and medicined, he just might miss the late night partying :oD! Below are some pictures from the last two  days. There’s one of him with Dr. Emani. Dr. E tried to pick him up to hold him for the picture and Bronson cried. He doesn’t know just how much Dr. E knows him… from the inside out ;o) We’ll have one with Dr. Tworetezsky to post soon. Below are some pictures from the last few days. They’re out of order.

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.

Expect Miracles

“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.

 

Stepped Down!

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.

 

He’s a Beast!

  • Philippians 4:11-13

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:

 

 

 

 

 

 

 

 

 

All zipped up

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.

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