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?

Decisions

Mason had his VCUG study, his hypoxia study, echocardiogram and PH Study and all was great. The VCUG studied barium filling his bladder and determined that there was no back flow into his urethra. It appears his kidney and urethra are all just fine. The initial echo on day 1 of life was not the best and this is what lead them to believe he may have the double urethra and smaller left kidney. Apparently, the echo was not very accurate, another one will be done just to make sure. The hypoxia study involved placing him in a small, clear,plastic cube and filling it with oxygen and then reducing the oxygen levels to determine how he would do in the airplane ride back to New Mexico. His 02 levels were approximately 87-88-not a problem at all. His PH probe study involved placing a tube down his nose that had a probe at the end of it. It was left in overnight (Monday through Tuesday) and the results were ready today. Again, all was just fine, meaning he is digesting his food properly and his acid was normal. Quite possible the NG tube was triggering some of his acid reflux/emesis(throwing up). The NG stays in the esophagus and keeps the spynxter muscle to the stomach partially open. The current discussion is still deciding how we will be handling his feeds.

Yesterday, Mason had his first full bottle by mouth. This was 55 ml, which he took down in just a few minutes. The next feed he only drank 30 ml by mouth and the rest was fed through the NG tube (gavaged). The feeding after that he took in a little less, 22 mls. This has been the pattern-ups and downs in quantity and as a result it is the reason they believe that the G tube will be the best to fatten him up. Danielle, Nurse Practitioner on our team, has spoken to Dr. Goens, the cardiologist in Albuquerque and Dr. Ethridge, our Silver City Pediatrician, and they both believed the best option was to have the G tube surgery. It seems that everyone believes it is a clear cut choice-everyone but Ernie and I. We are just fearful of putting him through another surgery. We will have to make this choice soon, but are being given the chance to have surgery either Friday or Tuesday of next week. Tough decisions.

In the meantime, he took a "bath" today and is in a sweet little outfit. He is just so beautiful. Both Tessie and Deacon Don stopped by to visit and say prayers and good thoughts for him. Last night, Kristi Heckelman stopped in to visit. Their daughter, Emma, who just had the Glenn is back for a bought with reoccuring Chylothorax. She experienced some hard breathing and they brought her in and discovered her Chylo had returned. This means back off the breast milk and back on Monogen. She is 5 months old. During rounds today the team felt Mason needed another xray as it appeared he may be breathing a little "rougher." Tachypnic I what I believe it is called. Not very worrisome, but they thought they would check it out. We pray all is well.

Pending our decisions on the G tube we may be air flighted to Albuquqerque next week. We will be staying there for a couple of days to determine how Mason does at altitude. Thank God it appears we are getting closer to home-we really can't wait to see everyone.