This single ventricle thing is a piece of cake

Mason seemingly glides along in his everyday routine completely oblivious to how special he really is. He's just a six month old who is happy, alert, reaching for everything and loving the tastes of new foods and drinks. I think we have learned a few little things during this ordeal and the most important ones that come to mind for me are 1) the rest of us haven't even begun to know what it feels like to have gone through so much and you think you've got problems?; 2)Mommy & Daddy are truly your best friends and advocates and in most cases will be there for you no matter what, so even if you don't wanna be seen with us later on-we'll be there if you need us, waiting on the sidelines; 3) the best things in life really are free-like smiles, kisses, coos and that sweet, innocent baby smell; 4) babies really are in charge; 5) God chose us to take care of his special, little boy and we have to take that honor and try to give him the best of the human spirit. We sure are lucky.

We had a 6 month pediatrician's visit Thursday and you know what that means. Shots! The regular round of 6 months shots, plus a flu shot. Mason has pretty much glided through all his shots previously and so this time around I expected the same. Poor Mason, he was blindsided and developed a fever of 102.2 by 12:00pm. After I stripped him down, gave him more Tylenol and some juice, we stayed up for a few more hours and he finally settled back to sleep. I'm guessing it must have been the flu shot that made him miserable. Dr. Etheridge was pleased to see how well he was doing and presented us with the fact that Mason, at approx. 15.04 pounds, was in the 10th percentile on the growth chart. Great news-we are still on the chart!

Mason is the superstar in that office, as soon as we check in the front, we are whisked back to one of the rooms in the back. Dr. Etheridge doesn't want him exposed to more germs and so he gets some special treatment. This includes getting the first in appointment. Dr. Johnson popped in to say "Hello" and take a look at famous Mason. He said he hadn't realized we were the family with the infamous kid.

Well, it looks like Mason may have some local company regarding his condition. Our ER nurse friend, Marsie, (Mason's Godmother) became aware of a young mother who is having her first child and she believes it to have HLHS. We offered to help in any way we could; especially sharing our experiences at Stanford as it appears that is where she will be delivering or taking the baby to once it arrives. Marsie said this young mother is completely devastated.

Many websites provide statistics that HLHS occurs in 2.1/10,000 of live births, and occurs in 7.5% of all newborns with congenital heart defects. Considering the entire county of Grant is approximately 13,000 to 14,000 people it is very rare to have 2 babies within such a short time and distance to have this particular heart defect. We can be thankful that we were diagnosed while the baby was in utero and that surgical techniques have improved over the years. I'm hopeful that if Mason ever needs a transplant, they will have been able to grow his heart from his own tissues/cells. In the meantime, Mason makes things look easy. I can't say enough how greatful we are to God for that and how thankful we are to have so many friends and family praying for us. We couldn't be more blessed.

Now, this is cute!

* Congenital Heart Disease Webring *
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Time Out

I had seen an advertisement for the upcoming George Lopez show to be held at Don Haskins Center in El Paso, TX earlier in the week. The last time we went to see him was 2 years ago with our dear friends, Bill & Marsie. Thinking of those fun times brought back some great memories and made me want to see him again. Of course, Ernie was up for going and for the next couple of days I debated whether or note we should go. Any decent seats were going for a considerable amount of money and I just couldn't bring myself to purchase them. As many of you know, we are the last minute type of people. Just about everything we do is last minute or we just can't get out of the house in time. So, to traditions sake I waited until 3:30pm on the day of the show to purchase tickets. Since Grandma is in Deming, I had given her a heads up and asked if she would be willing to watch Mason for a few hours. Even though the tickets hadn't been emailed to us before we left, we decided to go and figure it out when we got there. We packed up Mason & Jordyn and headed out to Grandma's. Since the show was at 8:00 I asked Jordyn and Grandma to give Mason his 8:00 meds themselves. So to make a long story short-we got there , were able to get the tickets and saw a pretty funny show. We got to Grandma's about 2:00 am and Mason had been asleep since 9:30pm. I didn't have the heart to connect his g-tube and set up his formula so I figured I would wait until he woke up hungry; which ended up being around 5:30am. He drank his bottle and went promptly back to sleep! This is the first time in his short life that he had not been fed overnight! I don't think we can do that very often though, those darn calories are too important and in order for us to meet our "goals" we have to hook him up for overnight feeds. It sure felt good to go out and have some fun and felt great to know how well he did without me!

We have occasionally followed a blog about Baby Gracie, who is another baby with HLHS. I just checked her blog and found out she had her heart transplant a few days ago. Unfortunately, it did not go well at all. Ironically, her new heart was not functioning properly once they put it in-the left ventricle was not contracting. So here they are again-basically in the same position where we all started-the left ventricle not working. Her parents made the decision to not let her suffer any further and took her off of ECMO. I found myself in tears thinking of how this sweet baby was leaving this earth and wondering if this would be happening to us anytime soon. When you have a baby with such a devastating condition such as HLHS it is so easy to get trapped into worrying about what the future holds. Reading blogs about children who haven't made it is the hardest of all ,but as I have said before, we have to have faith in God. Just like leaving Mason with my Mom the other night allows me to feel normal, leaving him in God's hands each day gives me peace of mind. For tonight, no more reading about anyone with HLHS.

Hope for children with Hypoplastic Left Heart Syndrome
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Day by Day

So it seems as though the events of the past six months are just a blur and thank God for that. Mason's oxygen tubing/tank prompts questions from just about everyone we meet and recanting those events seems surreal. Coming home and leading a "normal" life has made it easier to forget about all those trying times.

We had a wonderful dinner at our home with a couple of good friends this last weekend who just couldn't stop commenting on how good Mason looked. One of them stated she commended me for being so strong in dealing with his constant care. I had to say that we are so fortunate that Mason isn't really much trouble at all. Besides dealing with carting around his oxygen everywhere, making sure he has all his medications wherever we go and the g-tube feeding at night, he is no problem at all. God has blessed us with a happy baby who sleeps the entire night!

The economy has left us with a shortage of construction projects but this can certainly be seen as a blessing as well. By that I mean, I have more time to be with Mason! Attempts at going to the office and trying to deal with paperwork are certainly not on Mason's agenda and since Grandma has been in Deming, Ernie and I have been playing tag team when I really need to get paperwork done. All this makes for some hectic days but we wouldn't trade them for anything.

Twice last week Mason had evidence of central cyanosis-his tongue was extremely blue towards the back. At first I dismissed it due to the fact that I had given him grape juice but we noticed it a second time and were a little alarmed. Of course, this has made us hypervigilant, albeit we are not acting overly concerned. It may sound crazy to some, but we truly have put Mason into the hands of God. We only pray that God will give us the strength to deal with whatever may come our way and continue with our lives with as much normalcy as possible. Our happy family is just chugging along...

Cardiology Update

On January 28th Mason, Daddy and I traveled to Albuquerque to visit Dr. Goens, Mason's cardiologist. His 02 level was 85%. This is an improvement to what he had been running and we were glad to hear it! It is funny that the sat monitor will beep/alarm at a set point that most normal people would be in serious trouble! Yet, for Mason 85% is really pretty good. Since we were running late to the appointment we had to call and make arrangements with Dr. Fahl, Pediatric GI, to re-schedule us for a later time. Fortunately, he was glad to make time to see us the same day and told us just to let them know once we got in. Mason's condition sure gets some attention; unfortunately, it's not the kind we would wish on anyone.

After a review of his echo, Dr. Goens commented that it wasn't the best function that she had seen but that it was "fair." This is better than severely dysfunctional, so we will take it. Dr. Fahl suggested that we reduce the amount of calories per ounce of formula for Mason to 24kCal. Other than that, his G-tube site looked great and he praised us on doing such a wonderful job.

Dr. Goens eliminated the Aldactone from his medications which is great since this was causing him extreme gas and nausea. Since we have eliminated it, he has been doing wonderful. She also asked that we keep him on 1/2 litre of oxygen 24/7 until May. This should help heal his heart and get him through any congestion he may get from any viral illnesses. Having to carry around oxygen tanks everywhere we go is a bit inconvenient to say the least. I imagine Mason is a little tired of that tube being in his nose as well.

On antoher minor note, after many complaints/calls/emails to Dr.Etheridge regarding Mason's bowel movements (poop) he agreed to test it. So we collected a sample and got it sent off and low and behold it tested positive for C-diff. It looks like he hasn't gotten over it from being at the hospital. We are treating with Flagyl again and hopefully we can get it taken care of.

His current medications are:

Captopril 3 mls 3 times a day (increased from 2mls)
Reglan .8 ml 3 times a day
Digoxin .6ml 2 times a day (new med)
Lasix .9ml 2 times a day
Omniprozole 3 mls 1 a day
and baby aspirin 1/2 tablet 1 a day

I asked for his Captopril to be flavored and he loves it! It has actually gotten to be a treat for him to take his Captopril/Reglan/Digoxin/Lasix and baby aspirin as they taste great! The next time we get the omniprozole we will have to request flavoring as well. Since everything had been previously going through his G-tube, no one was concerned about taste.

It is probable that the medications have somewhat "masked" his ventricle function but we truly believe that there are forces that are allowing his heart to mend. God has gotten him this far, he can't back away now, we are counting on it.