One Tough Cookie

As many of you know, Ernie, Mason and I traveled to Palo Alto, CA on December 4th for Mason's scheduled surgery, the Glenn. We had been told we would have a clinic visit on December 5th and therefore booked our tickets far in advance. We learned that this date had changed to the 8th but decided to go ahead and come out early. We enjoyed a couple of days of peacefulness and settled in to Ronald McDonald house once again.

On Tuesday, December 9th Mason underwent is catheritization surgery in which they were checking the pressures in his pulmonary artery and right ventricle. They looked good and everyone decided it was a go for his Glenn surgery that was scheduled for this surgery. In this next phase the blood returning from the head would be directed bi-directionally to both lungs where it would then pick up oxygen before being sent back to the right ventricle before being pumped out to the body. This was supposed to be the "easiest" of the 3 stage surgeries.

We were told that we were second in line for surgery on Thursday, which means that there would be a slim chance that he would get in. No big deal, as we were "seasoned" veterans to the surgery schedule and knew what to expect. Wednesday night around 9:00pm one of the surgical team members called us and told us we were moved up to first on the surgical schedule. Mason would be going in after all!

Thursday morning came and with complete confidence we walked Mason to the OR and turned him over to the cardiac anesthiosologist. We were expecting an approximate 4 -5 hour surgery and settled in to the new surgical waiting area. At approximately 12:00 pm we were told to expect Dr. Hanley to come down and speak with us in approximately 20 minutes. Upon his arrival he greeted us and then proceeded to take us to the "HIPPA" room where we sat down to await what we thought would be good news. Dr. Hanley began with stating that "We had to change the plan". I didn't think this was a big deal as Mason had demonstrated some tenting in his pulmunoary artery on his echo and I thought he would be discussing how they had to fix this a s well. Instead he shocked us by letting us know that while the fellow, Dr. Maeda, was entering Mason's heart his aorta was cut. They had to take immediate measures to save his life, which included placing him on the heart lung bypass machine and profuse him with blood. Dr. Hanley said he had been on his way down to speak with us when the immediately called him to the OR. He also stated that he thought Mason had been in this state for approximately 5 minutes and that he was extremely opptomistic that everything would be fine. He even said he thought they would be able to go back in and do the Glenn the next day. No, they didn't even do the surgery which was scheduled as they were too busy saving little Mason's life. We had previously been told by the physician's assistant, Dr. Quang, that entering the chest was a very critical procedure and this was undertaken with utmost care since the scar tissue is so close to the heart. The one thing that he stressed was what took so long to get into the chest and that was so critical was what went wrong.

After speaking with one of the nurses, Michelle, she understood that Mason's neo aorta was cut and then subsequently ruptured. Nevertheless, since this devasting event the plan for his surgery and care has changed several times. We will no longer have the surgery this week but instead will wait for and MRI on Monday to determine if there has been any damage to his brain. The Glenn surgery places more pressure on the brain as it changes the distribution of blood and therefore there is concern on whether or not to proceed with the Glenn right away.

Mason has proven that he is just a trooper. He was extubated at 6:05 pm last night and has been taken completely off of nasual canula oxygen today and is breathing room air. During his immediate post-operative stay he was taken completely off of all pain and paralytic medications to determine if he had movement and was acting like he should. Of course, this little boy did that-show them he is tough. When Carolyn from the chaplainship came in and annointed him with healing oil his body knew it was time and within a few minutes he began to move and open his eyes. This little boy has angels helping him through it all. Shortly after, his pain medications were then added back on in part. They have since started to wean him off of any continous medications and he is being given doses as needed. His feeding through the g-tube started with 3mls per hour at midnight on Friday and have increased to 30mls per hour continuously today.

That first day was completely draining and both Ernie and I feel our bodies totally drained. The stress has given us what no-work out could, complete utter exhaustion. Keep Mason in your prayers...he needs it now more than ever.

Mason is such a favorite around here and we have received all sorts of well wishes and words of encouragement. We know all those thoughts and prayers are helping him pull through.

Life in the fast lane

As you all know we were discharged from UNM back on October 15th. Since then it has been a blurr of feeding, meds, sleeping, staying up, not sleeping, running the kids to catechism, helping with homework, celebrating Jordyn's birthday, dealing with insurance, dealing with paperwork and a myriad of things related to just existing! Mason is doing just great! He is over 11 pounds now and his 02 levels remain around 84%. We are scheduled for his next surgery on December 11th. We will need to be in California by December 4th for his consult and catherization, prior to surgery.

I have a hard time believing he still needs another two surgeries. He looks just like any other baby, except for the scars and g-tube. On the 5th he received his Synagis shot. This helps to protect him against RSV, which is very prevalant in our area beginning in November. One of the nurses at Stanford told us the monthly shot cost is $1700.00. That is $1700.00 a shot! I haven't bothered to inquire if this is true, but I don't doubt it. We requested a summary of charges upon our discharge from Stanford and they were over $1 million. That was even before the medical transport to UNM. He truly is our million dollar baby.

Mason really doesn't require too many medications but it is a little challenging to make sure he has them at the right times. They are as follows:
8:00 am Captopril/Reglan
10:00 am Lasix/Prevacid
4:00 pm Captopril/Reglan
10:00 pm Lasix/Prevacid/Aspirin
12:00 pm Captopril/Reglan

There is only one pharmacy in town that can provide his meds, Silver Rexall. I didn't even know this pharmacy existed, but thank God it does. Ernie is in charge of dispensing/preparing all the mediations and I am in charge of dosing Mason. They all go through his g-tube, which is the best benefit of having the g-tube. I don't think I could have imagined saying that before! Regarding his feeding schedule, he is currently feeding for 2+ hours and has an approximate 45 minute break. We have a mini backpack with a small pump which we can carry anywhere, this allows us to take him along even while feeding. Of course, we limit his visits out to stay away from all those germs!

Our last visit to UNM on 10/24 went very well. Mason looked great and doesn't need to be seen until later this month. He has two separate appts, one with the GI doc and the other with the cardiologist. These visits to Albuquerque are a bit costly but we simply don't have a choice since he needs the specialty care.

Our local pediatrician, Dr. Etheridge, had scheduled home health visits for twice a week. I let him know after the first 2 weeks that this was not necessary since the nurse was just repeating everything I had been doing on a daily basis. That is weight and 02 levels. We are enrolled in the home monitoring program at Stanford and therefore I have been keeping track of this data to provide to them on their weekly call. As I mentioned before, it is critical that he gain an appropriate amount of weight before the next surgery. It looks good so far.

The kids just adore their baby brother. Jordyn keeps asking why a baby so cute and sweet as Mason had to have heart surgery. Of course, there isn't an answer but we have long ago stopped wondering why. Actually, I'm not so sure I even remember asking why but asked God to help us through instead. At least, that is what I recall now and it seems like a great plan for the future.

Mason's Road to Albuquerque/Kid's Visit

Homeward Bound

It has been several days since our last post and the most notable item for discussion has been that we were finally transferred to Albuquerque-UNM Children's Hospital last Wednesday. We had been told that it was very possible that we were to transfer last Thursday but Wednesday morning came and it was a go to leave that day. Ernie had come in the Thursday after Mason's g-tube surgery and was with us when we got the news. That Wednesday we ran around and got supplies in order to pack up the breast milk we had stored in the freezer and Fedex it out to New Mexico. The same evening Mason and I boarded an ambulance that drove us to the Lear jet waiting to take us to New Mexico. We had to leave Ernie behind since he had already purchased a return flight ticket for the next day. Mason slept through the entire flight and cried only when we were close to landing at Albuquerque. We taxied over to Cutter-daddy's favorite stop-and another ambulance was waiting for us. We arrived at the PICU (Pediatric Intensive Care Unit) and were settled in. It all worked out perfectly - Ernie stayed behind and cleaned up our room at Ronald McDonald House and checked out the next day.

The best part of being here was that Ernie was able to bring the kids to visit their baby brother!! Baby Jaylen just couldn't get enough of hugging and kissing him. Matthew was all over him and Jordyn concentrated on making up sweet songs to comfort him. Mason just loved it all. Ernie and I took the kids out to the balloon fiesta the evenings of Saturday and Sunday and the kids got to see a few balloon glowing and the fireworks display on both nights. The kids all loved the Ronald McDonald house and felt it was a great little trip. It was really a joy to be able to have some normalcy back in my life. I was so shocked to see how much baby Jaylen had grown! She looks so different from the last time I saw her, which was right after our July 4th camping trip. Both Matthew and Jordyn look a little more grown up but are still my little babies.

Mason continues to work on his feeding. Since UNM does not have the nasty tasting Monogen he now has to have the nasty tasting Portagen. Also, UNM does not have Prilosec so he is now on Prevacid. We have learned that you will receive whichever drug created by whichever pharmaceutical company has contracted with the hospital. We are really in the wrong business.

It is now a matter of time and thoughtful prayers that will allow us to go home before our next surgery date, which is tentatively set for November 11. If Mason can tolerate his feedings without throwing up we have a shot of going home before then. I have faith that this little boy will get us out of here soon.

G Tube

Today Mason successfully underwent the G Tube surgery! Yesterday evening the NP gave us the word that his surgery would most likely occur tomorrow morning. A couple of techs from the lab came by to try and get an IV started. After the 3 allowed sticks (one in each foot and in one hand) they were unable to start an IV. Poor Mason just about passed out from those attempts. He was covered in sweat! Around midnight two of the nurses from the floor came in and attempted to place an IV in the remaining hand. Thank goodness they succeeded on the first attempt.

Around 5:00am we were told that Mason's surgery time would be 8:45am. Around 8:00 or so the NP came in and told us that the actual surgery time would be at 11:00. After a short wait we were off to surgery. I carried Mason in my arms, while one of the nurses carried his portable monitor. We were checked in and were visited by the cardiac anesthesia team. Dr. Robin Church and Dr. Ramamorthy were to be the cardiac anesthesia team and I couldn't be more pleased. They had successfully brought Mason through his first heart surgery and this time he would be under for a much shorter time. I requested to meet the surgeon prior to the procedure. Dr. Hartman promptly came out from his previous surgery and introduced himself to me and "Mr. Terrazas". He was a very nice man and said he had lived in the Taos, NM area before. Here is the link to his faculty profile...http://med.stanford.edu/profiles/Gary_Hartman/

Mason went in to surgery at approximately 11:05 and Dr. Hartman came out and told us all went well at approximately 12:25. Fabulous! After about 40 minutes or so I was called to go ahead and come back to recovery. Sweet Mason was crying his eyes out! Clearly the local pain injections were wearing off. The nurse gave him some pain meds and he felt better. In the meantime, his hematocrit levels had dropped from about 45 pre-surgery to 35 post surgery. This caused some concern with the cardiologist and he requested that they draw more blood before we left recovery. Apparently, this was typically unheard of-the drawing of blood before leaving recovery and the nurses were a little huffy about the request. Nevertheless, the blood was drawn(I requested an expert for this one) and we were back up to the third floor. So far, he has needed one injection of morphine and has been on Tylenol. It appears that he is mostly comfortable. I am so pleased that he came through it very well. One more thing down.

I'll update with photos when I have direct access to ftp sites. Unfortunately the wireless web here at the hospital blocks some sites and prevents uploading to several sites as well. The hospital tries to help the families as much as possible. There are several day lounges that have washer/dryers, microwaves, refrigerators and sleep beds that can be reserved for those families wishing to stay overnight. We are fortunate in that our room allows us to stay overnight at the bedside. Our nurses basically take over everything at night so parents can sleep-for that I am very grateful.

Thank you Dear God for getting us through one more day..... Since I noted the link to Dr. Hartman, here is the link to Dr. Frank Hanley, who performed Mason's first heart surgery...http://med.stanford.edu/profiles/Frank_Hanley/. I saw Dr. Hanley in the hallway while I waited for Mason to return from surgery. Dr. Hanley assured me that these heart patients eventually recover from their eating difficulties and had words of encouragement for me. It was a pleasure meeting up with him again.

Swallow Study #2

Today little Mason had a second swallow study to determine the amount of aspiration he was experiencing. Again, with the unthickened barium liquid he silently aspirated a small amount of fluids in his lungs. Meaning he didn't even cough when it went into his lungs. The danger of this is an extremely hightened risk for pneumonia. The second try was with thickened liquid. This resulted in no aspiration. He was quite hungry, as his 11:00 feed was withheld for the 1:00 testing. There was an improvement over his last swallow study in that very little of the unthickened liquid was aspirated. It appears his vocal cord paralysis/damage is improving.

We have finally, oficially committed to going through with the g-tube surgery. This after several crazy events. This past Saturday, one of the nurse practioners came in and said she would be having surgery come in to have me sign a consent form for the g-tube/nissen surgery. I was certainly taken aback since at no time what we had agreed to. I made it clear we were not on board with doing the nissen/g-tube and that no one had said this was the "plan." She said she would go back to the team and clear up any miscommunication. Shortly thereafter she came back in and said that the team was on board with our decision. On board-that's the term we see hear alot. The next morning Dr. Bernstein came in and said everyone was in agreement and we would proceed with the g-tube only and medication management of the reflux. At this point Mason was taking Previcid and Zantac for the reflux and it has made a tremendous amount of difference-no more puking up all his feeds. At the present, we have weaned him off the Zantac and he is on the Previcid and Regalan. The Regalan has in fact caused some amount of tremors in his legs and arms but at this point the benefits outweigh the side effects. His dosage has moved, 2 times every 6 hours to 2 times every 8 hours, in the hopes of lessening the tremors. Dr. Bernstein made a comment during rounds that had me question what the was talking about. He said he learned something new-we would just proceed with the g-tube. I asked the NP what she thought he was talking about when he said he learned something new. She guessed that it was because the g-tube/nissen was usually performed together-not done one without the other. She said they had to consider the decision thoughtfully because if they had to later to the nissen, it could be viewed as a medical mistake. I don't know exactly what to think. Is this reasoning proper? Do they always just do the two surgeries together whether or not the patient truly needs them just to cover themselves? One of the nurses told me she thought 80% of the patients/families that arrive here never question the decisions by the team. I don't know if we are doing the right thing, but I feel in my heart that it will all work out for the best. I'll leave it up to God.

During my pregnancy I often found myself praying to God and "giving" our baby to God. I always had to correct myself though. I realized that I had to thank God for allowing us to have this little one in our lives.

We have been through a series of "neighbors" lately. I don't recall if I have posted this but here goes. Our teenage neighbor, Tonee, had to go back down to the PICU kicking and screaming. Apparently she was having arythmias-dangerous for her condition and she really didn't want to go back down. That was Saturday night. That morning we got a new neighbor from 5:00am to about 9:00am. She had a series of operations on her heart beginning when she was 2 days old. She is now 17 and enjoys playing golf. She was here for a catherization and will undergo another heart surgery in about 1 month. We enjoyed a quiet room for a few hours but then got another neighbor last night who was to receive a lung transplant. Apparently they drove 5 hours to get here, only to be told about 1 hour after arriving that the lungs were not viable for transplant. Another teenager, she and her family left this morning after being majorly disappointed. Shortly after a baby girl arrived who had just had her Glenn. They are a family from Albuquerque and they hope to leave by the end of the week. This baby has reflux problems as well and promptly threw up her feed. Seems to be a reocurring theme with these heart babies-the reflux that is. Someone told me that perhaps because their hearts are enlarged they might take up more room and therefore cause more problems with reflux.

Little Mason had to be hooked up in the middle of the night for a possible heart arrymthia himself. Rick, our wonderful night nurse, saw a change in his heart beat and called in the cardiac surgeon on duty. They scheduled a 12 lead EKG, which he slept through. This even after they had to reposition his leads for about 30 minutes before getting an appropriate reading. I even had to stand on a chair and lean over the bed to make sure his hands didn't pull something off. This wasn't a problem though-he barely moved. He just grunted to let us know we were bothering him! All went well-nothing to worry about. It was all probably just a problem with the leads moving-the leads he has continually hooked up to him 24/7. These are for heart beat, respiration and oxygen levels. Good news overall.

During the night, Mason takes his feeds entirely by ng tube. He typically doesn't stir much and sleeps pretty much all night-what a blessing. I stay in the room but don't even have to do anyting-the nurses take care of him all night. It sure is going to be different going home.

Holding Pattern

It has been some time since we have had any updates to post. We are basically in a holding pattern. While Mason's cardiovascular recovery has been nothing less than spectacular, his progress on feeding and gaining weight has been at a snail's pace. He has continued to have episodes of emesis (vomiting) and therefore has not been making the weight gains the team would like to see. They are looking for an average weight gain of 30 grams per day-apparently an attainable goal, if you can keep your feeds down!

We were scheduled for the G-tube surgery for tomorrow. This was as a result of Ernie and I going back and forth on whether or not to allow him to go through another surgery. Dr. Goens, our Albuquerque cardiologist, spoke with Ernie on Saturday and explained that she felt he should have the surgery for a variety of reasons: our location/easier to manage g-tube, lessens the risk of aspiration and hopefully we can keep his feeds down. After further discussing with the team at Stanford we had finally come to the decision we would proceed with the surgery. This morning Dr. Bernstein, Chief of Pediatric Cardiology at Lucille Packard, came in during rounds and suggested we should try a course of the drug, Reglan. This would hopefully allow little Mason to increase the motility in his bowels and perhaps reduce his reflux. The thought is that in addition to his G-tube, he may need a Nissen procedure as well. (The Nissen secures a portion of the stomach around the esophogus to tighten it and prevent reflux.) If the Reglan works then it loks like the G-tube may be all that we need. While the G-tube can be taken out when no longer needed, the Nissen is a permanent "fix". I am praying God gives our doctors the wisdom to do the best thing for our little boy. In addition to the Reglan he has started, he continues to take Zantac and Prilosec to try and control what appears to be reflux. His symptoms include vomiting and arching of the back- (elongates the esophogus). These are typical of reflux even though all his tests indicate he has none.

Our friend Robert Davis has finally left for Georgia. Robert has been a patient here on and off for his entire life. His Grandmother, Kathy, left with him today only to have to be in another hospital when she returns for her husband, who has to have heart surgery as well.

Our new friends, Eric & Kristi have been able to leave the hospital as well. Their daughter, Emma, was here again for reoccurance of Chylo. She was discontinued from her re-start of breast milk and put back on the Monogen. I tried the Monogen myself and found it to taste just like corn starch mixed with water, with maybe a little bit of extra yuck added. I am hoping that Mason will be able to have breast milk after his six week course of Monogen with no problems. Time, of course, will tell. Little Mason continues to root for the breast-a rather small disappointment for me. I wish I could feed him-I think most moms believe that their milk will only help their baby. I can't help but wonder if these docs are wrong-breast is the best, right?