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Wednesday, March 4, 2009
Tuesday, March 3, 2009
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.
Monday, March 2, 2009
Friday, February 27, 2009
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...
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...
Wednesday, February 11, 2009
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.
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.
Sunday, January 25, 2009
Life at home...
As you all know we were discharged on December 31st and traveled to Albuquerque's UNM Children's Hospital for our cardiologist visit. We met with Dr. Love who briefly checked Mason over and sent us on our way. We were so relieved that we didn't have to be kept over night in the hospital OR in Albuquerque for that matter. Being home felt so good!
Our current hicough is that Mason has to be on continous oxygen. This has made our freuqent out and abouts a little more complicated. The doctors at LPCH explained they were hoping the 02 would help his heart heal. So far the best stat he has had was 83.
Once the kids got back from Mexico, Mason promptly caught their viral crud. Poor Mason has been so congested. His next visit to the cardiologist is this upcoming Wednesday. We pray things will look better on this next echo. I am so not ready to go back to California.
In the meantime, Mason has helped Matthew celebrate his 5th birthday and Jaylen her 2nd. we have so enjoyed having this sweet boy back home! Thank you God!
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