Archive for March, 2013

The Nissen Fundoplication Surgery

Sunday, March 31st, 2013

March 6th, 2013

The night flew by and before you know it Carolina was coming in the room to bathe me at 5:30 am. I am tired and ready to go back to sleep! After my bathe I was ready to go. Once we got downstairs to the operating room my mom and dad were able to come in the room with me until they took me away. Right before I left to go downstairs the hiccups started. THe hiccups are usually always a sign of phlegm and aspiration. My parents were on edge about me having them and I could see in their eyes how worried they are for me. I wish I could tell them that I am going to be fine. Once the anestheologist came in and Dr. Castro it was time for me to be taken away.
The surgery could last anywhere from three to four hours.

MariaJose came to be with my parents and my grandmother is flying in tonight from Canada. It is always good to have a good support network!! My parents went upstairs to the room to wait. An hour had passed when my mom’s cell phone beeped ad it was a message from Dra. Castro. She wrote to my mom to tell her that they had put the I.V. in me and were ready to start surgery. My mom was thrilled that Dr. Castro was writing to her. Dra. Castro who is my pediatrician was not actually inside the operating room but standing outside of the operating room watching through a glass window. The next text message was that I was doing really good and everything was going great. Two more messages my parents would receive the last one saying that they were putting stitches in me and taking me off the tube! I managed to breathe on my own as soon as they took the tube out! Finally Dra. Castro told my mom to meet them outside of the operating room where I would be taken to intensive care and spend the night there for observation. Once I was being monitored it showed me to be at 98% and only 1 liter of oxygen. I am quite proud of myself. I have accomplished a major feat!

My night in ICU went fine. I had many phelgms and had to be aspirated a few times but other than that I was doing really well. One more week of being cooped up inside but it is all worth it!!! my doctors were amazing! They did a fantastic job and we are all so happy. We are about to experience a major life change for all of us.
Love Malia

Eve of surgey

Sunday, March 31st, 2013

March 5th 2012

I stayed the remainder of my time at Krystal’s house and on Tuesday we checked into CIMA. Dad had to stay back and finish some work up and he was also moving all our things into our new home. This was a very big job!! Last summer little by little we have been working on a one floor home. My dad moved everything out of our old home and into the new as the plan was for me to come home from my surgery to my new home. I am so looking forward to going home already!

Once inside the hospital, we ran some blood work for the anesthesiologist and another Complete Blood Count. Everything is coming back clear. My cardiologist Dr. Rafael Gutiérrez came by that evening to run an Eco Cardiogram before the surgery. I have a slight miscommunication between my left and right ventricle. Dr.Gutierrez wanted to make sure that everything was okay with me before I was put under anesthesia. That night three out of the five doctors came into my room to talk to my parents. They explained to them all the risks and complications of the surgery. They were all very much concerned that once they intubated me they I would like the ventilator breathing for me and not be able to come of the tube. Ny lungs were not in the best of the shape. In order to do laparoscopic surgery my stomach will have to be filled up with Carbon monoxide. Sometimes kids have a hard time with tolerating the gas and then open surgery will have to be performed. Even after all the risks were put in front of my parents, they decided the benefits outweighed the cons. I was scheduled for surgery at 7am the following day.

That night around 9pm I began to have the hiccups. This lasted for an hour and then the phlegm and trouble breathing started. Before I knew it I was on 6 liters of oxygen and having a very hard time breathing. Mom went out to the nurses station and asked them to call Jose my respiratory therapist. Jose has been working on me since I have been 1yrs old. My parents totally rely and trust him. After 20 minutes had passed mom went back out to the nurses station and asked for Jose and Carolina told us that he was in Emergencies with a patient in very bad condition. Ok, my mom says how long will that take? There was no answer. After another 20 minutes had passed and mom and dad working on me things really had not improved. Mom told Carolina that I needed to be aspirated and mom really did not want to have to do that. Besides, she is just my mom not the professional and hey we were in a hospital paying!!!!! Why was there not another therapist on the floor????? The nurse Carolina suggested that she could aspirate me. So at that point mom did not care and said yes do it as I really needed to be suctioned. She began to aspirate me just when Jose walked in the door. I have to say my mom was a little mean when he walked in the door she pounced on him as she and my dad were very frustrated that no one was there to take care of me in a very crucial time… Heck I have surgery tomorrow! I need to sleep!!! Finally at 12:00 am I was finished with therapy! Time for bed now.. No one really got any sleep.
Malia xo

Pre surgery craziness!

Friday, March 29th, 2013

After returning from San Jose the doctors had finally agreed that I was a good candidate for the Nissen Fundoplication surgery. It has taken almost nine months of complaining about my reflux for them to finally listen and agree it might be the best thing for me. The surgery was scheduled for the 10th of March.

The doctors’ idea was for me to be in fighting condition for my surgery. The problem was that all this reflux has wreaked havoc on my lungs and when I was in San Jose my pediatrician suggested that I have an xray on my lungs. The xray showed pneumonia as my lungs were so hazy and cloudy. It was not pneumonia though as I was not sick nor did I have fever or need to take an antibiotic. All the aspirating of food has made my lungs very messy. Once we arrived home instead of getting better I began to deteriorate. Every time I had to eat I had such severe reflux that my parents and MariaJose would have to do some serious respiratory therapy on me. Feeding me would take 5 hours for only half of the amount I normally received and after eating we would start three hours of respiratory therapy. Each time my oxygen would plummet and I would end up on 3 liters of oxygen. The aspirating and nebulizing machine stayed by my side at all times and this would go on into the wee hours of the night. We had two weeks to go before March 10th. After three days of being home mom was calling the doctors back and insisting that the surgery be moved up. For one thing parents were concerned about me losing weight and even though my lungs were not in great condition it was important that I have some meat on my bones before my surgery.

On Friday March 1st, me, mom and Maria Jose packed up quickly and headed to San Jose. Things were not getting better but worse. My oxygen machine only has 3 liters of oxygen so if I were to get really bad I could be in big trouble and living out in the jungle is not the place to be in trouble. Thankfully our dear friend Krystal let us stay at her home as she was away for the weekend. It was very nice to be in her home. We arrived that night and first thing next morning we went to CIMA to do another xray of my lungs and to run a blood test. The xray actually showed my lungs looking better than the last xray we took and my blood work came back fine. We are now 100% sure that the reflux is the culprit to many of my problems and I need this surgery now. Dra. Castro began to make calls and to get my team of surgeons together for my big day. It was decided that on March 6th I would have the surgery at 7am.

In the end before the surgery, I was only able to be fed an ounce an hour and fed continuously for 24 hours. This was the only way that I could handle any type of food without getting severe reflux. I still had to have my breathing treatments and the only time mom disconnected me was when it was time to bathe me. I no longer was having my mom’s yummy home cooked meals but pediasure as it was the only thing that would go through my feeding bag. I am hoping that March 6th gets here quickly.
Love Malia

Tickle time!

Friday, March 29th, 2013

Hammock time!

Friday, March 29th, 2013

Chiling with mom!

Mission: Coconuts!

Friday, March 29th, 2013

Found 7 coconuts for me!!

Therapy time!

Friday, March 29th, 2013

Beach time pre surgery!

Friday, March 29th, 2013