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.

Perfect day

We had a late morning in our room just lounging and enjoying some good quality time with Bronson. Tonight was a fun busy night. A DJ came into the house and hosted trivia in the main room. It was a good time. He brought toys for the kids and CDs for the adults as prizes. We had a feast for a meal thanks to a group who thought they were at the Ronald Mcdonald house! :oD ! They were volunteers from a cancer organization and the Ronald Mcdonald house here only sponsors families with cancer patients. Me and Eric both filled our plates before the mistake was realized. Bronson is quite the entertainer! He gets to charged by being around people. One of the volunteers took her picture with him.

Surgery is tomorrow at 6:30am. We are confident in Dr. Emani that him and his team will take premier care of him. Afterall, Jesus is the true surgeon. Though are certain risks with surgery, typically it’s all of the unknown’s that come with recovery that are the most scary. Please lift your hearts and your minds to the Great Lord that he keeps his healing hands on Bronson through recovery as well as in surgery. We have a tons of fun pictures our day today that we will work on getting posted in the “just pictures” tab.

The Muscle That Wasn’t

 We had a long day yesterday.  Bronson was under anesthesia for 8 hours to get through the 3 procedures but all went well.  Due to the duration the doctors decided to keep him over night.  We talked to several of the docs and finally got to meet Dr. Emani!  He offered his hand to Tab and she hugged him.  He went over their findings and over the surgical plan with us so here’s the good news.

We had been told that the left side valve between the atria and ventricle (mitral valve) had one muscle instead of the two that should be there.  They found the missing muscle!  It is still attached to the wall of the heart so it can be detached and hopefully it will learn to work  like it should.  The surgeon is also going to try to relax the valve that is there so it should let more blood into the ventricle and hopefully encourage it to grow.  Bronson had 3 small vsd’s (holes between the lower chambers) and 2 of them have closed and the other one looks like it’s headed that way too.  Also the large asd (hole between the upper chambers) is still there but they will put a patch over it with a small hole to help encourage the left ventricle.  The small hole will be to keep either side of the heart from over pressurizing and causing problems.  The primary surgery they will be doing on Monday will be what they call the Glenn, which is re-routing the blood flow but with the other modifications the intention is to rehabilitate the left ventricle and hopefully get Bronson a four chamber heart!!  That is the reason that we came all the way to Boston, they’re the best!!

Smooth Sailing….

Today was a great day. Since Boston accepts patients from all over the world, their processes are set up to ensure it’s as hassle free as they can control for the families. Each family is assigned a nurse practioner, who essentially is the conceirge for outpatient testing. Today he had his basic vitals taken which consists of weight, EKG, O2 saturations, and blood pressures. After vitals, we went to X Ray.  From there he had his blood work done. I left the room for that, which is sop for me :o) Eric was very relieved at how skilled the nurse was at accessing his vein to get blood. She got his vein the first try! His typical experience with blood work is that a few nurses make several attempts before they can get his blood, or they just go through the veins in his head. You can only imagine how relieving it was for him that this was a more positive experience… well as positive as blood work can be for a baby… and daddy! Bronson was quite the charmer. He has learned that when he leans into the person he’s facing with his arms out that the person, who has always been females, will hold him. So he was held by a few nurses! Everyone loved him and kept commenting how happy and cute he is. We were home by 2 so both me and Bronson got good naps while Eric parked the car and stopped at CVS to get some neccesities, like diapers. This was my first nap since we left! Tonight was pizza night at the Yawkey house and some of the families supplemented the pizza with guac, a delicious veggie nacho dish, salad, and fresh baked cookies. Eric got his social fix and we met some of the families staying here. You would never know that the families are here for major medical procedures. The overall attitude and feeling is confident, worry free, and positive. We all know that we’re at the best hospital in the world so we can endulge in the lighter moments. Tomorrow we check in at 7am for his sedated echo, MRI, and heart catheter. Hopefully we’ll meet with Dr. Emani, his surgeon. I may not post tomorrow because I plan for it to be very hectic. We will most likely be bringing him back to the Family Inn after his catheter, assuming there aren’t any major complications that would result in him being admitted. I added a few pics from our first day and some from last night of the Bronsonator.

a view out the window from inside the house

 

 

 

 

 

 

napping in the "quiet room" while we wait to check in

 

 

 

 

 

 

 

 

 

 

We Made It!

We’re here in Boston! The Bronsonator was just about perfect the whole flight. He slept through it all. We had his oxygen on slow flow .5 liters and had to push it up to 1 liter because he was desatting to the mid 60’s. It was of course VERY stressful for me but ended up not being an issue. Once we put him to 1 liter he stayed constant at 80 to mid 70’s. It’s been a long and uneventful day. We got to the Yawkee house 6 hours before we could check in. We commandeered the “quiet room” with our 7 bags of luggage including carry on’s, and relaxed and enjoyed the beautiful scenery outside the windows. We have had dinner and are taking Bronson for a lil stroll through the house to tire him out for his bedtime bottle with the high hopes that he will sleep through the night. Tomorrow is a big, eventful day of pre op testing and meeting the cardiology team. So we are off to bed!  It is my goal to post some pics tomorrow from our day today.

And …. we’re off!

I don’t expect to have the time tomorrow to post and I want to share some links and some passages that resonate through my mind often.

This is a great video about where we’ll be staying, the Yawkee Family Inn.

http://www.youtube.com/watch?v=wJgj4a2O3qA

These are my 2 favorite links about Children’s Hospital Boston.

http://www.youtube.com/watch?v=aqQWwJYzgsc

http://www.youtube.com/watch?v=2H-F7NVh0cM&feature=related

It’s a great distance to travel. It’s more than worth the feat to have the assurance that Bronson will be in the premiere medical care which will allow us to focus on him and not the quality of his care.

Few are aware of the challenges we encountered with his care at the local hospital when he had his first surgery. After a very disheartening and abrubt event that jolted me into awareness, my primary prayer became, “Lord put us on the path that will take us to the hospital where your Will will be done through the medical staff, grant me discernment to know when we are on that path, and the trust in that discernment.”

Solomon asked for wisdom, and God said, “. . . I will give you a wise and discerning heart.” –1 Kings 3:12

 

I never imagined when I began searching hospitals that we’d be going as fas as Boston.

The Psalmist wrote: “Come and hear, all you who fear God, and I will declare what He has done for my soul. I cried to Him with my mouth, and He was extolled with my tongue. If I regard iniquity in my heart, the Lord will not hear. But certainly God has heard me; He has attended to the voice of my prayer. Blessed be God, who has not turned away my prayer, nor His mercy from me!” (Psalm 66:16-20).

The Lord listens to many who pray fervently the same prayer. So many have come together in his name and have prayed for Bronson’s heart. There is a definite peace within me that strengthens my faith to know how many are lifting up their hearts to the Lord to get him through this next surgery.

“Then those who feared the LORD spoke to one another, and the LORD listened and heard them; so a book of remembrance was written before Him for those who fear the LORD and who meditate on His name. ‘They shall be Mine,’ says the LORD of hosts, ‘on the day that I make them My jewels. And I will spare them as a man spares his own son who serves him’ ” (Malachi 3:16,17).

I will post when we get there! Pray for a safe and hassle free traveling for the three of us. STAY TUNED :o)

 


 

COUNT DOWN TO TAKE OFF!

Bronson had his last cardiology appointment yesterday with our Phoenix group. His heart function still looks great and his congestion has cleared. His labs all came back negative. He has been cleared to fly! The stress level is increasing with every day we get closer to take off, on Nov 8th. We have a portable oxygen tank that we will half to keep on a constant slow flow for the full duration of the flight. This I’m sure seems more stressfull than what it will actually be in reality… I hope! :o) The rest of this week we will be busy bodying around to finish last minute errands, clean the house (for aunty Renea’s great uncle Henry, who will be staying with our dogs), and packing. We may be confronted with a GRAND decision to make pre surgery. Once all of his testing and pre op procedures are completed, his surgeon will decide if he is a candidate for the left ventricle rehab that will eventually lead to a bi ventricular repair. All of this translates into him having a four chamber heart instead of the classic single ventricle circulation. If he is a candidate for the lv rehab, we will be presented with the decision to pursue the bi vent surgical path. Currently, Boston is pioneering the lv rehab and from what I know now, have only been doing it for the last few years. There isn’t any solid survival rates and the post surgery recovery has so many unpredictable variables. The unknowns for this surgery path far exceed the one’s for the single ventricle surgery path. The risk factor is significantly greater with a much higher reward though. The reward being a four chamber heart! Every post going forward will now be on the blog that we created: http://bronsonbeckman.com/. Please forward the blog to your friends/family who are following him via you and who aren’t on FB. PRAYERS, PRAYERS, PRAYERS! You are all powerful prayer partners and have got us this far.

 

 

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