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.

Wet Eyes

Today was mostly a good day for little Mason but a little teary eyed for Mommy. During his scheduled 4:00 pm feed Mason just didn't feel like waking up. We had to wait until his 7:00 feed to try his bottle again. Once again his feeding schedule has changed from 2 hr feeds and continuous feeds through the night to 3 hour feeds. This was done to hopefully settle his tummy and make him hungry enough to try bottle feeding. He took in about 10 ML from his bottle but started to gag a little so we stopped. He was then fed through the NG tube. I know it's not our fault but it is disheartening that I can't feed this baby either by breast or bottle. There is such emphasis on having him gain weight, I'm afraid since we are having such a hard time. If only he didn't have to get off the breast milk, we would probably be fine.

No big tests today, just a blood draw and everything looked well. The team is discussing our possible transfer to UNM for next week. That is if we do not get the G-tube surgery done. One of the surgery fellows came in today and asked for me to sign the consent form for surgery. I told him I wouldn't be able to until next week. Hopefully, the PH test he will have done Monday will give me some insight on what we should do. He will also be having another test on Tuesday to see how he will handle the plane ride to Albuquerque. They place some sort of tent over him while he is in bed. I will find out more over the weekend.

Did I mention yesterday he had his final chest tube removed? Also, he had his final stitches removed from his open heart surgery, a echocardiogram and his newborn hearing test, which he passed. Thank God for little things.

More Big News

At about 3:00 pm one of the surgeons came in to remove Mason's pacer wires and his last chest tube. Great news for us! The drainage from the Chylo will be monitored to determine if there continues to be any build up in his chest cavity. They already took an x-ray and will take another in the morning. I imagine there will be several others before we leave. Currently, they are in the room preparing to do an echo cardiogram of little Mason's heart. I will have the chance to view all his new plumbing.

We will be trying another feed by mouth at approximately 5:00 pm. I'm looking forward to seeing if he can do it again.

Oh, and another big thing-his cord fell off today! Big firsts all around.

First Wagon Ride

Baby Mason went on his first wagon ride at the hospital to visit Radiology for a upper gastrointestinal study. They wanted to make sure Mason has all the right components/functions for eating/swallowing. Barium liquid was injected into his NG tube and we were able to follow the flow from his esophagus, stomach, bladder and then into the small intestine. He passed with flying colors.

After a rough night, the team came in and told me they were going to reduce his calories from 24 to 28 calories to see if this reduced his diarrhea, the tube in his chest for the Chylo would be removed, even though it still leaked around the site a little, and he has slight Atelectesis. This is a slight build up of fluids in the lungs due to patients lying in bed for extended periods of time. It is quite common and there is no need for concern at this point. As he is freed from his final chest tube, he will be more mobile and we can hopefully get him more upright. Not too upright, the physical therapist said there should be no "tummy time" for 2 weeks after his chest closure.

The Occupational Therapist, Sandra, just left and we fed Mason his second feed through a bottle. He drank 22 ml-not quite double what he drank yesterday but still more. This is a big deal since in rounds this morning they wanted to push doing a g-tube by next week. This is a feeding tube through the gastrointestinal tract and is something I definitely what to avoid. It would mean another surgery, intubation, recovery etc. This little one doesn't need all that. He shows that he is a trooper as he worked hard to drink his "milk". We have to prove he can do it so we can avoid this surgery.

The Latest

We have been really busy these past couple of days after having been moved to the "step-up" CVICU. It is a four unit area where we had the lucky bed spot. The past several people who have been in that spot have gotten to move up to the 3rd floor. Guess what, so have we! Yesterday evening, after rounds, the doctors told us we were to be moved up to the third floor. This is the final step/floor to be moved to before being able to be sent home. Before we moved, Mason had to undergo a swallow study. Since his left vocal cord was paralyzed/weakened they had to test his swallowing capabilities. He was placed in a small, car seat like chair and x-rayed while he swallowed some barium liquid. The first swallows with the "regular"/thin fluid he silently aspirated. This means it went into his lungs and he didn't cough it up. They then thickened the liquid with a powdered thickening agent and tried again. This time it went down the esophogus where it should have gone. The occupational therapist told us we would be able to begin trying to offer him a bottle with his Monagen and thickening agent to practice eating, so long as the doctors agreed to this plan. Their concern would be that he aspirates liquids in his lungs and eventually this may cause an infection. This, of course, jeopardizes his health.

Last night we made the move into a big boy bed and went upstairs to the infamous 3 West. This was such a big accomplishment, as it is another step to home. Mason's oxygenation levels continue to be mostly in the 90's. The general consesus is to continue to offer the Captopril to try and adjust his blood pressure and hopefully bring down the oxygenation levels. In addition, since we will be going back to a higher altitude, we should see those levels decline-that is what we want. Ideally, 75-85%.

We had a visit from the urologist today who had some concerns regarding his left kidney. She noted that on his echo she believed he might have a duplicate uretha on his left side. She told us that many individuals have this condition and it is often not known about and does not cause any problem. The concerns would be that he could have a blockage or backflow of urine into the kidney. To date, he has had no fever and no urinary infections to speak of. This is great news. Nevertheless, next week he will have a study done to check for any problems. A catheter will be placed into his bladder and dye will be added. When his bladder fills, the dye will be visible traveling through the various areas that are of question. Any abnormalities will result in a closer follow-up. There would be no need for any immediate surgery unless there were something serious to worry about. At this point, they do not seem very concerned, just cautious since there are no Pediatric Urologists they work with in New Mexico. This is such a limited field, I doubt we even have any!

At 2:00 pm, Sandra, the Occupational Therapist, came in and had me hold Mason at the strangest angle and give him a small amount of thickened Monogen. I held him perpendicular to me and on his right side. This was to try and prevent any liquid from making it past the left side that is possible damaged/distressed. He took to the bottle beautifully and drank 15ml before just tiring out. Sandra told me that it is very common for cardiac babies to tire quickly. Drinking that bottle just wore him out and he slept for hours! Fortunately, it looks like he did well for his first attempt. Tomorrow we will try another feed and continue building up. The main goal is to have him properly nurished and gaining weight.

We have struggled for the past couple of days with his feeds. He has had either extremely loose stools or has thrown up on each feed. The night nurse, Analise, suggested we try and thicken his formula and it appears this has worked so far. She told me that she has a daughter who has a heart condition and went through surgery here at Lucille Packard/Stanford. She said her daughter went through the same problems with eating but eventually outgrew them by approximately 3 months. We don't have that time frame to work with as everyone here is so concerned with his adequate growth before his next surgery, the Glenn. I just learned today that we have a tenative surgery date of November 11. As I may have indicated before, this next surgery, while risky, has a much lower mortality rate. We are going to do everything we can to make it there. In the meantime, he takes his feeds through his NG tube (through his nose and into his tummy via a very small feeding tube.) This means no work for him-total bliss since he gets to eat and sleep at once.

The Pediatric Cardiologist, Dr. Raji, is a wonderful person. She is a young woman and really has it together. She thoughtfully explains the teams goals/plans for Mason and makes me feel like I am an important part of his care. This is a totally different outlook from our time in CVICU, where the emphasis is strictly on the patient. Parents aren't always consulted on medical decisions that are made-they just get it done.

All 3 of our former room mates from CVICU have remained there and will continue to be there for some time. Baby Abigial, also from New Mexico, we have to undergo another surgery by the end of the week, Robert is waiting to be extubated and Mandy's baby is awaiting another surgery as well. Mandy's Dad told me he was a little envious that we were moving up to the 3rd floor. I completely understand.

Deacon Don and Tessie both stopped by today to visit and pray over Mason. It is comforting to have these special people pray over him and others here. By the Grace of God we have made it this far.

The sound of the kids back home is so beautiful. Baby Jaylen is learning so many new words and she is bilingual to boot! I can't wait until they are able to see their sweet baby brother to show him all their love.

Baby Mason's Photos -click to be linked to web album

Too much of a good thing

This morning sweet Mason had a surprise ready for Mommy. When I arrived his chest tube had been removed. At least the large chest tube on his right side, the one on the left side will remain until the drainage has been stopped. The other issue we are watching is the level of his oxygen saturation. Most of us have oxygen saturation levels of 95-100%. Little Mason requires his level to be between 75-85%. His current levels have fluctuated but are definitely above 85%-meaning too much blood is flowing to his lungs and not enough to other parts of his body. When I brought up my concerns to the RN she said they had in fact been watching this for the past couple of days and were going to give him Captopril to see if this would lower his blood pressure-in turn this would hopefully lower his oxygen saturation levels. I pray that they are able to stabilize with the medication without lowering his pressure too much. It just doesn't seem right-having too much of a good thing! Just one more hurdle this tough boy will get over-I have faith.