Sunday, August 11, 2013

A Grand Homecoming!


Cesar, Diego and I flew home late Sunday evening.  Diego is definitely ready more than anyone to be home, but everyone falls in close behind him. 




We didn’t make it home until 11:00pm, but what an amazing welcome we received!  I had asked that no one come to the airport because we were arriving late at night.   So, the huge warm welcome we received was unbelievable.  The airport arrival was more than enough to celebrate this huge heart success, but there was so much more; the camera man (did that really happen), the house decorated, a basket full of heart shaped rocks(found by friends on a nature walk), and even food & beverages in the fridge.  It is surreal and uplifting to be surrounded by so many wonderful friends full of love, kindness and warmth. 
 




 







 

 
 

Friday, August 9, 2013

MRI


We arrived at the hospital early in the morning for Diego’s MRI.  It has been a wild few nights leading up to this appointment as Diego’s anxiety was definitely high.  He hasn’t slept well and yells throughout the night.  In his sleep, he fights the nurses yelling; “leave me alone”, “you are hurting me” and “get away from me!”  I can only imagine how grateful he must feel to be finished with this appointment.

As it turned out, Diego decided the MRI was pretty cool!  He loved the idea that he was able to watch a movie through special glasses.  He also liked the button and earphones that he used to communicate with the technician.  He had no problems remaining still for the MRI.  The only thing that is able to place Diego in a trance is watching a movie.  The world could be crumbling around him, but as long as a movie is playing, he doesn’t move. 

After the MRI, X-ray and EKG were complete; we met with Dr. Marx.  The MRI showed that Diego had mild pulmonary obstruction and trivial (9%) aorta leakage.  The things to look for are heart block and LV failure, but both are unlikely given Diego’s current state.  He even had his stitches removed from the chest tube incision. 

 


 
 
 
And, Dr. Marx was thrilled to receive a Heart Warrior T-shirt from Diego.    

Tuesday, August 6, 2013

Post Op 8 East ~ The Floor ~ Day 6

The echo showed leakage in Diego's aorta artery.  Pre double switch, the aorta was pumping blood only to the lungs (low pressure system) now it is pumping blood to the entire body.  This is what the aorta is designed to do, but in Diego’s heart for the past 10 years it has not had to maintain the higher pressure system.  Del Nido does not want Diego leaving Boston until he looks further into it.  Del Nido was in surgery this morning, but said Diego can be discharged today.  He has requested an MRI during Diego’s follow up appointment which is scheduled for 7:00am Friday, August 9, 2013.  First he will have the MRI followed by EKG, chest X-ray and appt with Dr. Marx.  We don't have any more details on the leakage at this point.  The MRI will hopefully provide more insight later in the week. 

Diego has asked many questions about the MRI. He is definitely disappointed to learn there is yet another step so quickly after discharge.  I took this opportunity to explain to Diego my recent realization.  I thought if I shared my insight it might help him to also see things a little differently.  When we made the final decision to move forward with the Double Switch operation we had to accept that our goal wasn't to cure Diego's heart defect.  Our goal was to improve his heart in hopes that he would be able to hold onto every part of his heart for as long as possible. There will always be another step in the process and another obstacle to overcome. We traded one set of problems for a different set of problems. However, the advantage is the new set of problems hopefully won't require a heart transplant or valve replacement anywhere in Diego's near future.  It has taken me many mental battles to come to terms with this and I certainly don't expect Diego to accept this fact after one conversation.  However, I do think Diego is old enough to start comprehending that his heart health will always be a part of our lives.

I also believe that we have to do our part to maintain our overall health.  Diego went into his surgery incredibly healthy.  He recovered and was discharged in 6 days from a complex operation.  A healthy lifestyle must always be a priority in our lives. 


For now, Diego is actually smiling and thankful to be leaving the hospital today. 

Monday, August 5, 2013

Post Op 8 East ~ The Floor ~ Day 5

It has been a busy morning. It started early with his EKG, then he walked down for a blood draw, and X-ray.

We took a short break to sit outside. The first thing he wanted to do when he got outside was put his feet in the grass. 

Then, it was time for his echo. He is still waiting to get the pacing wires out then he will officially be wireless. I wish I could say he is happy, but we just aren't there yet. He cried a bit while we set outside. He's just exhausted and wants to be home.   There is a possibility that he will be discharged Tuesday. We will have to stay in Boston for a follow up appointment, but we aren't sure how many days that will be. We will probably know more once the team reviews the echo. 

He really does look amazing...not even 1 week out!


Sunday, August 4, 2013

Post Op PICU Day 4

He had a really peaceful night. They've taken him off the pacemaker this morning. He is using a 2 on his oxygen (yesterday it was a 4). He is still on oral blood pressure meds and Lasix.  He was telling the nurse and I this morning that his tummy didn't feel well, but we didn't give it a lot of thought since he did so well yesterday. The next thing we knew all 3 of us were elbow deep in throw up. It took some time to get his tummy to settle down then he went on a mini walk (notice the barf bucket in his wheel chair). The doctors did their rounds and said he will be moving to a regular room today!  We are excited about the progress. 

Then we had a Diego moment…
Diego fell asleep in his chair. The attending physician stopped by while he was sleeping.  She said they were close to having Diego ready to move to the regular floor. The doctor turned around and left. The next thing I knew Diego had set up in his chair was standing up and said, I'm getting out of here.  Right there, Diego and I had a standoff.  I had to grab him and set him back down in the chair (he was still connected to a few wires). The nurse came around the corner and Diego started yelling with big tears rolling down his face, "Let me out of here!" Then, looked me straight in the face and said, "This is all your fault!"  Oh, good times!

Diego has made a loud enough statement around here which landed him in a private suite at the end of the floor. I'm not sure if it is because they feel sorry for Diego or feel sorry for whoever would have been his roommate. Diego made it clear that he wasn't interested in sleeping with any crying babies which is the majority of the patients on this floor.
They are glued to the TV

We also got to see Jay, his favorite nurse from last year. Jay was still wearing his Diego band and said he kept it on all year. He even wore it during the Boston marathon this past year. He said Diego was his inspiration. We love Jay! 



Saturday, August 3, 2013

Post Op PICU Day 3

Thankfully, all the prayers from everyone seemed to have brought peace to Diego throughout the night. He slept okay, had a few ice chips and kept them down.  This morning, he has a sinus rhythm (he is setting his own normal heart rhythm) so they have the pacemaker set as a backup if his heart rate falls below 60.  During the night they started backing off the IV blood pressure meds and started oral BP meds this morning. He has kept that down so far too. He is still sleeping so not moving around much and pretty quiet and peaceful at this point.  

During the day, he has made progress.  The chest X-ray showed improvement in the fluid between his lungs and chest wall and he is continuing to keep small amounts of fluids down.  All of this means, they are ready to start pushing him.

They moved him into a chair. It was very painful for him, but a needed move to get him progressing. They reduced his oxygen and he is able to keep his oxygen saturation in the upper 80s lower 90s. It really needs to be in the upper 90s. So, he has to work on deep slow breaths which he finds painful in his chest.  The pacemaker is supplying occasional backup for him when his HR drops below 60.   His blood pressure still goes a little high (142/74) when he moves around. He will need to stay in PICU one more night. Basically, he has to move even though it is painful. 

They took out the chest tube at 4:00.  He was anxious about having this done.  He wanted it out, but it is a large tube so he was afraid of the pain.   I'm learning Diego is a lot like his mother. He likes to know everything...the good, the bad and the ugly.  He had me take before and after photos of his tubes so he could see exactly what he was dealing with. He didn't like it, but needed to know. He did great. They gave him morphine just before the procedure (which is like yanking on a water hose) so Diego fell asleep as soon as it was over.

I took the opportunity to walk back to the Yawkey Inn to shower (I hadn't done that in awhile...ugh). We are finally starting to see the light at the end of this step. I'm trying not to get ahead of myself just focusing on the here and now. I spoke with my girls this evening, they seemed really happy so that was good to hear. 

Diego quote of the day…
Diego:  “Mom, when do I get to go home?” 
Mom:  “Diego, we have to take it one step at a time.  The next step is they will be moving you to the regular floor tomorrow.”
Diego:  “I don’t want to take steps…I want to take the elevator.”  

Friday, August 2, 2013

Post-Op PICU Day 2

Around 4:30am the nurse started reducing Diego’s pain meds so he would wake up.  By 5:00am he was awake and within an hour he was off the ventilator. 
He's Awake!

Flying Solo!


Once awake, it didn’t take long for Diego to become agitated and frustrated.  A Diego quote…

“When is she (his nurse) getting off the phone?” 
I ask, “Why?” 
Diego raises his hands up, looks around and says, “For her to get all of these tubes out of me.” 

Oh, it’s going to be a long day.

He's moving around more which has caused his blood pressure to rise. The highest I've seen it today is 148/76.  Therefore, they've increased his blood pressure meds. They need him to come off those meds a little before he can try walking.  He is seeing a lot of double and blurry vision.  He becomes very nervous when his BP spikes.

He is not remembering information so we are replaying the course of the last 2 days over and over.

His oxygen saturation drops rapidly without his oxygen (nasal piece). Eighty-one is the lowest it has dropped before getting the oxygen piece back in place.

He is still on Lasix and urinating a lot! 

He's been nauseated and thrown up some throughout the day. He ate a popsicle around 2:00pm, but was unsuccessful at keeping it down.  In fact, Diego has been unsuccessful at keeping any oral fluids down. In general, he has felt crummy all day. Around 5:30 he threw up the Tylenol he had been given for a slight fever. After throwing up, his oxygen saturation levels dropped into the upper 70s (with oxygen assistance). After a chest X-ray it was determined he has Pneumothorax (air in between the lungs and chest wall). They are trying some oxygen therapy then will X-ray him again in approximately 4 hours. Hopefully we will see improvement. 

The follow up X-ray didn't show much change. They are going to keep him on 100% oxygen over night and X-ray again in the morning. If it becomes worse they would need to put him back on the ventilator. So although this isn't great news it is better than the alternative.

Dr. del Nido stopped by earlier and said he isn't leaving ICU until he makes some changes with the pacemaker and lung. Hopefully tomorrow we can get Diego up and into a chair since moving around helps him improve overall.  Unfortunately, his blood pressure is still elevated. It's all such a balancing act. 


Tonight, before Cesar left the hospital, I was standing beside Diego holding his hand. He looked up and asked, “Where’s dad”. I pointed to Cesar standing at the foot of his bed. He asked his dad to stand on his right side and hold his hand. Then Diego asked us to pray for him.  Diego's oxygen saturation dropping and the doctors hovering all around him to help him breathe was very traumatic for Diego. Once everything calmed down he asked several times if he was going to die. I told Diego many times in preparation for this surgery that the greatest thing he can do when he is afraid is to pray and remember that God is with him and understands his suffering. 

Thank you for your constant love prayers and support. It means more than you will ever know.

Post-op PICU Day 1

Dr. del Nido stopped by early this morning.  He said the chest x-ray and everything else looked good.  He is ready to start weaning Diego off meds and machines.  This will be a very slow process with big leaps forward and occasional small steps backwards.  Overall this is a very good sign.
The first machine to be disconnected was the pacemaker.  They would like to see Diego’s heart rate stay at 80 or above.  Diego’s HR is hovering around 77.  They are optimistic that Diego has a naturally slow heart rate. 


He had a nice treat this morning, his nurse brushed Diego's teeth and cleaned his mouth for himJ

Diego’s good buddy, Forrest’s mom stopped by when passing through Boston today.  Just before Marlow arrived (approximately 12:00pm) the nurse stopped the paralysis meds.  While Marlow was bedside with me they removed Diego’s left atrial line (approximately 1:30pm).  Diego is still pretty quiet.  He is not opening his eyes or moving much at all.  The nurse is happy with the slow progress and said while he is resting he can work on draining more fluids.  


Early in the evening, Diego had some abnormal heart rhythms.  His HR had been 67 for most of the afternoon then jumped to the mid 90s.  They performed an EKG and said it was junctional rhythm.  So he is back on the pacemaker.  They are pacing his heart over the junctional rhythm so his current pacing HR is 111. 

He is still highly sedated so he isn’t really moving around much.  They are waiting to get more fluid off him before reducing his meds and removing the ventilator.    If his fluid number is in the negative this will help him breathe on his own easier.  We can see on the monitor that he is already breathing a little on his own.