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.

Little Surprises

Yesterday, Daddy and I took lunch break and came back to Mason's bassinet to find a voice specialist around his bed. Apparently, while we were gone, they performed a test to see if there was any damage to his vocal cords. Children who have undergone surgical repairs to the left side of the heart often have their vocal cords damaged. The doctor, with no bedside manner whatsoever, told us that one of his vocal cords was not working. She indicated that is was probably due to surgery and he may have difficulty in swallowing. It was obvious she had never gone to Tact 101 while in medical school-the message was delivered with very little compassion. Fortunately, there was an therapist that was there to visit us who told us she would be performing a swallow study on Tuesday. We pray the cord isn't completely damaged-according to the therpist, Dr. Hanley and several nurses there is a 50% chance that it will repair itself and return on its own. Right now, Mason has a sweet little cry.

Today, Ernie left back home. It is time that the kids know that we still exsist! He hasn't told them he was coming and will be giving them a big surprise. Another big step was taken today. Baby Mason got his RA line out. This is a lijne/lead that goes directly into his heart. He bleda little when they pulled it out and therefore they had to give him some blood. The hurses took this time to change ot his dressings and find another vein for his IV line. I should be able to hold him sometime today. The chest tubes will be one of the last things to go. We also found out that he would be changed over to formula, Monogen, because the fat in the breast milk is going into his lymph nodes and being excreted out. You can see this in the secretions coming from his left chest tube. The clinical term for this is Chylothorax. It is caused due to trauma/nick in the lymph nodes near his heart. This is typically seen in repairs/surgery done to the aortic arch. The chyle from the lymph nodes is leaking out and filling his pleural space (space around his left lung). The condition is expected to heal on its own but I was told it may be undertermined amount of time. This means we will not be leaving the hospital until the drainage has cleared up. That is okay though-it was caught and we are hopeful that his little body can fix itself from this as well.

Extubation Day

Yesterday, Tuesday, August 27th was the day Mason was to be extubated. When we arrived to the CVICU early that morning he had just had another tube put into the back of his chest. The fluid that has been building up needed to be removed prior to having his tube come out and therefore his planned extubation needed to wait another day.

Ernie headed over to CVICU this morning to find that the doctors had decided that they would go ahead and remove his tube today. I remained back at the house to finish up some paperwork and got a text from Ernie saying they were about to do the procedure. Daddy was there to take the pictures and see the wonderful event. I'm actually glad I wasn't there since I didn't need to see him under any stress. Luckily, everything went well and he was able to breathe on his own. Another great accomplishment for our little one. He remained awake for the next five hours. His beautiful little eyes followed each of our faces. He looks so beautiful!

Starting out at 8 pounds 14 ounces sure must have come in handy,since now he looks so thin! Most likely he will be weighed in the next day or two and we'll be able to see just how much weight he has lost. Soon, the goal will be to put some of that weight back on. We are eagerly awaiting the dotor's ok to begin his feeds again. This is breast milk fed through the tube in his nose. One of the challenges for me has been to keep pumping every two hours or so for this little one. It's just a small thing to have to do compared to everything he has been through so far. As so many care to remind us, it's a long haul.

Mason's Chest Closing

Monday, August 25, 2008 was the day Mason's chest was closed! For the past few days, each doctor/nurse/nurse practioner commented on how good Mason's progress was. Each day we saw his swelling go down and his chest was coming together on its own. He is such an amazingly tough little guy and is holding his own.

We spend the majority of the day at his bedside. Although he is only 7 days old today, we know he is aware his Mommy and Daddy are there for him. The doctors told us that is was very possible that Mason would have his chest closed on Monday but of course, it was all pending on the surgeon's availability and bed space in the CVICU,(cardiovascular intensive care unit). We were told that Dr. Hanley was not in, but that Dr. Reddy would be the one doing the surgery along with Dr. Maeda one of the Fellows. The surgery would take place in the CVICU itself, not in the operating room. The room is removed of all visitors/parents and non-essential staff and the OR team is brought in. We waited all day for word and heard that around 3:30Dr. Reddy was giving his 45 minute notice to the parents of the patient he was operating on. Around 4:30 Dr. Reddy came in and told me, "looks like he will have his chest closed soon." We were so excited since we thought there was no way he would be set to go today. An hour or so later, the CVICU was closed off and Mason was on his way to closing his chest. At 6:20 pm Dr. Maeda came over to us in the patient waiting area and told us that everything went well. Mason had no problems with his pressure/stats so they were pleased with his results. We were so excited-this was such a fabulous step. His chest is being held together with surgical wire and will be re-opened on his next operation. Those wires will be there for the rest of his life!

This morning during rounds, the Doctors all agreed that he should be weaned from some of his medications, which include the paralyzing agent and morphine drip. The morphine itself can be administered by his nurse if she sees that he is getting agitated. I find myself so tearful wondering if he is in any pain. I can only continue to pray to God that he is watching over this sweet little boy.

When I walked in this morning, the curtains were pulled open and sunshine was bathing him in such a beautiful glow. For the first time since minutes after his birth he opened his beautiful eyes. He was staring right at me-I don't know for sure if he could see his Mommy but it felt so good no matter what! When he hears Daddy his heart rate goes up-we know he can hear us at the very least. Throughout the day he has started moving his limbs around a little at a time. His jerky movements are small but every one is helping his circulation improve. The most uncomfortable thing to watch has been when the nurses or the respiratory staff suction out his chest. Once he was crying, without sound, and started to turn purple due to the fact that the tube that is providing his oxygen/breathes is being suctioned out and he is void of air at the time. My heart felt such pain-I wish I could be there instead of him. Ernie asked his nurse, Anne, if this was typical and she said yes. She assured him that it appeared that Mason was not in pain since his blood pressure and oxygen levels changed during the procedure but shortly thereafter went down/up respectively. This is little reassurance to a mom not wanting any pain to come to her child.

We will be heading back to the hospital shortly to resume our vigil. Nurse Rosalina will be there tonight. She has been in the pediatric nursing field for over 30 years and takes the best of care with this little one. The only way I have been able to sleep at night is knowing he is in her care.

Baby Mason's Surgery Photos

August 22, 2008 Mason's Surgery, August 23, 2008 1 Day Post Op