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...
Friday, February 27, 2009
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!
Monday, December 29, 2008
So this is Christmas
Little Mason had his first Christmas here at the hospital with Mommy & Daddy. Since he tested positive for C Dif we have been confined to our room with no chance of parole until his 10 day antibiodics are up. Soon baby, soon. We have decorated Mason's room with a couple of stockings and a miniature tree and nativity scene. Grandma had bought him special Christmas pajamas which he wore on Christmas Eve and Christmas Day. He looked so cute! Santa Claus came by and took a picture with Mason and I and left several presents for him sometime during the night. At the Ronald McDonald house Mason received several presents as well. All in all, a good day.
Mason has had several rough days and the doctors were looking at everything possible to determine what could be wrong. He was finally diagnosed with having withdrawl symptoms and has now been put on a methadone wean. He is at an extremely small dose and will gradually receive less over the next several days. It is so amazing that he is now back to his normal cheery self. Apparently, his body was clamping down as those brain receptors needed to have some pain relief! Poor boy, he has worked so hard at getting better.
Today we went to another echocardiogram, which has shown some improvement in function. We also had another modified barium swallow study which Mason passed on thin liquids! Hurray!! We have now fed him a couple of ounces in his favorite bottle. He is just going to continue proving to us he can overcome anything.
Mason has had several rough days and the doctors were looking at everything possible to determine what could be wrong. He was finally diagnosed with having withdrawl symptoms and has now been put on a methadone wean. He is at an extremely small dose and will gradually receive less over the next several days. It is so amazing that he is now back to his normal cheery self. Apparently, his body was clamping down as those brain receptors needed to have some pain relief! Poor boy, he has worked so hard at getting better.
Today we went to another echocardiogram, which has shown some improvement in function. We also had another modified barium swallow study which Mason passed on thin liquids! Hurray!! We have now fed him a couple of ounces in his favorite bottle. He is just going to continue proving to us he can overcome anything.
Monday, December 22, 2008
Are you kidding me?
Little Mason has survived so much and has faced yet another challenge. Saturday we found out that part of his lung had collapsed due to the fact that the drainage tube pump had been disconnected and no one noticed. Fortunately, it popped right back up when the pump was started. Whew, another disaster averted-so wrong. By that evening Mason was having these fits of pain and kept waking from his sleep. The pain hit his body so horribly that he would wrythe around so much he turned himself sideways on the bed. The only thing that seemed to help him was fentenol, even though he had both Motrin and Tylenol around the clock. I asked the nurses who took care of him as well as one of the other nurses that were chatting with me if there was any relation to his pain and his lungs., Each one reassured me that No, there shouldn't be any pain from that. One of our nurses even told me that it appeared Mason was having withdrawl symptoms from his pain medications. She was in favor of him continuing them and then trying to taper them off. I had decided to go take care of some personal matters outside the hospital and found out when I returned that she had given him a dose of fentenol because he would not calm down. I even questioned his drop in o2 saturations during rounds and was told we shouldn't concentrate so much on numbers but on how Mason looks. Well, I totally agree if we were at home. In the hospital setting, I think there should be a whole lot more emphasis in analyzing those numbers.
We were somehow cleared to move up to 3 West Sunday night. Poor Mason started to be totally unconsoleable as soon as we arrived. More drugs....throughout the night his 02 levels continued to drop and the fellow on call arrived to check on him. At the time, Mason was peaceful and it didn't look like there was a problem. Wouldn't you know it! Fortunately, our nurses were persistent and asked him to check on him again. An xray was order for the morning and we continued to wait, console, give drugs until then. The first xray showed pneumothorax-liquid in the lungs. Soon after PA Quong came by and taped up the area around Mason's chest tube to make a tighter seal. The thought was that less air would escape and help fill the lung. Anothr xray a couple of hours later proved the entire right lung was now filled with fluid. This is known as a tension pneumothorax and one of the symptoms are these sharp pains. Is it possible that this mothers/woman's intuition is more accurate? I was so upset, I just couldn't believe that someone could not have caught this sooner. Someone should have monitored him more closely, especially since his lung had already collapsed once. Fello Teymour said since the taping didn't work we would have to replace the chest tube. Mason was then made NPO (no food) and we were set to go to the procedure room at CVICU. The NP, Kirsten, told me the procedure itself would be approx 10 minutes. For the second time, I heard those dreaded words, Parents sign the consent form and never think that those things can happen. Are you kidding me? Is this something I need to hear at this point???If we weren't headed down right at that moment I don't know what I would have said. I had reached the maximum. She also indicated she would find me once the procedure was done. Apparently, she forgot since I hung around outside the unit for over an hour when I saw Teymour, who told me everything looked fine and the xray was good. I went back with Heidi, our social worker, and saw Mason who was pretty uncomfortable. One of the fellows said that they inserted another line and that is actually what took the longest. Come on, someone do some follow up!
Another shocker came, when during rounds, the team was discussing Mason's severly dysfunctional ventricle. We went from moderate to severe in the same period? Who the heck is reading these things and who do I listen to? I asked to see Dr. Roth for clarification.
Before 4 or 5 pm the Director of Nurses came by and excused Dr. Roth for not being able to visit with me today but said he would stop by tomorrow. She said he had told her that there were several things I was concerned about and she was there to follow up. Wow, did I have a word or two about everything that had happend to us. While somewhat sypathetic, she did say that they were somewhat "trained" to say those things regarding consent. I made it clear that things should be said in another manner and especially at an appropriate time. In addition, I asked her to follow up with 2 other Moms, whom I know have had various other problems. Dale, Haley's mom even had a nurse laugh at the fact that her infant daughter's 02 stats were so low. She said she felt she could just kill someone and she asked another nurse to take over and she left the room. The Mom from Denmark is afraid/worried to leave her boy overnight and he is 15 or 16. Not a lot of confidence to be found around here right now. I was able to bring up several things such as the consent form comment, the complaints from nurses regarding the Massimo 02 sat probs, the concerns from Dale and Denmark family, the issue with the MRI an Mason not eating for 12 hours, etc. It was a regular gripe session, but it didn't make me feel any better.
As for Mason, he is currently peacefully resting and we have this tough boy another day! The kids left Sunday to Monterrey with Grandma and Malena and Michael is with Ernie at home. In the meantime, it is back to the hospital grind. Mommy staying nearby Mason and his crib. Oh we even have a private room-he has CiDif and is on contact precautions. Bet you don't here that too often. That is okay-almost every kid under 6 months carries this around and since he was tested for it and it showed up we got our our room-away from everyone else.
Okay, enough rambling and time for some sleep. Keep those prayers coming, Little Mason sure appreciates them. He sure knows he is wanted!
We were somehow cleared to move up to 3 West Sunday night. Poor Mason started to be totally unconsoleable as soon as we arrived. More drugs....throughout the night his 02 levels continued to drop and the fellow on call arrived to check on him. At the time, Mason was peaceful and it didn't look like there was a problem. Wouldn't you know it! Fortunately, our nurses were persistent and asked him to check on him again. An xray was order for the morning and we continued to wait, console, give drugs until then. The first xray showed pneumothorax-liquid in the lungs. Soon after PA Quong came by and taped up the area around Mason's chest tube to make a tighter seal. The thought was that less air would escape and help fill the lung. Anothr xray a couple of hours later proved the entire right lung was now filled with fluid. This is known as a tension pneumothorax and one of the symptoms are these sharp pains. Is it possible that this mothers/woman's intuition is more accurate? I was so upset, I just couldn't believe that someone could not have caught this sooner. Someone should have monitored him more closely, especially since his lung had already collapsed once. Fello Teymour said since the taping didn't work we would have to replace the chest tube. Mason was then made NPO (no food) and we were set to go to the procedure room at CVICU. The NP, Kirsten, told me the procedure itself would be approx 10 minutes. For the second time, I heard those dreaded words, Parents sign the consent form and never think that those things can happen. Are you kidding me? Is this something I need to hear at this point???If we weren't headed down right at that moment I don't know what I would have said. I had reached the maximum. She also indicated she would find me once the procedure was done. Apparently, she forgot since I hung around outside the unit for over an hour when I saw Teymour, who told me everything looked fine and the xray was good. I went back with Heidi, our social worker, and saw Mason who was pretty uncomfortable. One of the fellows said that they inserted another line and that is actually what took the longest. Come on, someone do some follow up!
Another shocker came, when during rounds, the team was discussing Mason's severly dysfunctional ventricle. We went from moderate to severe in the same period? Who the heck is reading these things and who do I listen to? I asked to see Dr. Roth for clarification.
Before 4 or 5 pm the Director of Nurses came by and excused Dr. Roth for not being able to visit with me today but said he would stop by tomorrow. She said he had told her that there were several things I was concerned about and she was there to follow up. Wow, did I have a word or two about everything that had happend to us. While somewhat sypathetic, she did say that they were somewhat "trained" to say those things regarding consent. I made it clear that things should be said in another manner and especially at an appropriate time. In addition, I asked her to follow up with 2 other Moms, whom I know have had various other problems. Dale, Haley's mom even had a nurse laugh at the fact that her infant daughter's 02 stats were so low. She said she felt she could just kill someone and she asked another nurse to take over and she left the room. The Mom from Denmark is afraid/worried to leave her boy overnight and he is 15 or 16. Not a lot of confidence to be found around here right now. I was able to bring up several things such as the consent form comment, the complaints from nurses regarding the Massimo 02 sat probs, the concerns from Dale and Denmark family, the issue with the MRI an Mason not eating for 12 hours, etc. It was a regular gripe session, but it didn't make me feel any better.
As for Mason, he is currently peacefully resting and we have this tough boy another day! The kids left Sunday to Monterrey with Grandma and Malena and Michael is with Ernie at home. In the meantime, it is back to the hospital grind. Mommy staying nearby Mason and his crib. Oh we even have a private room-he has CiDif and is on contact precautions. Bet you don't here that too often. That is okay-almost every kid under 6 months carries this around and since he was tested for it and it showed up we got our our room-away from everyone else.
Okay, enough rambling and time for some sleep. Keep those prayers coming, Little Mason sure appreciates them. He sure knows he is wanted!
Wednesday, December 17, 2008
The Glenn
Wow, what a fitfull night it was. We were told yesterday that Mason was to be the first case today (Wednesday) for his surgery. We stayed with Mason most of the day yesterday and went to Ronald McDonald to rest for the night. We had asked what time we should be at the hospital in the morning and most people agreed about 6:30am. I woke up every hour and many times in between. The constant buzz of email coming in on Ernie's phone didn't help matters. Each time it buzzed I thought it was time to get up. I finally got up at 5:30 and got ready. We found Mason fast asleep on his stomach and freshly bathed for his surgery. The three of us enjoyed each others company for a couple of hours before he was taken up to surgery at 8:12 am. Dr. Jumba and Dr. Church, pediatric cardiology anesthesiologist's, wheeled him away.
Ernie and I waited in the parent lounge and snoozed off and on. We passed some of the time watching the construction workers caulk, cut JumboTex, and fit wire mesh outside the window. They were in no hurry, while we just couldn't wait to hear from Dr. Hanley. Around 1:30 we were informed Dr. Hanley would be coming out to speak to us. The feeling in my stomach was like a bunch of bees churning in their hive. When Dr. Hanley came in, he looked happy and left the door to the small waiting room open. This had to be a good sign and in fact it was. He told us that everything went well. Mason had his bi-directional Glenn and there was no need to do major work to his pulmonary artery. The shunt had been removed and the "tenting" that was observed resolved(layed flat) once the shunt was removed. He told us that he probed the pulmonary artery and it appeared all was fine-no narrowing. Little Mason did not have to go on heart-lung bypass (CPB)! We joined Mason on the floor approximately 50 minutes later, where we found him coming out of sedation. The nurse gave him morphine but it had virtually no effect on him. His sedative was increased and this helped make him comfortable. The majority of the day was spent weaning down his oxygen and medications for a quick extubation that evening. It was explained that patients do better after the Glenn if they are removed from the ventilator quickly. At approximately 8:10pm his breathing tube was removed and he was breathing on his own. Not happily, mind you. Although I don't know, it appears difficult to have to breathe on your own when you chest hurts and a machine has been trying to do it for you. It took some doses of pain Medication to help get Mason calm, which in turn helped him breathe better. This kid is so tough the morphine doesn't even phase him.
Dr. Maeda, the fellow, who cut Mason's aorta performed the initial chest opening again today. For several days after last Thursday he had been walking around with a rather sullen look. He often took time to console us, stopping by to check on us. I am sure he felt terrible over what occurred. When we all heard the results of the MRI were good news, it was like we all could breathe again. We have never felt any anger towards him and we genuinely like him a lot.
One of the anesthesiologists who took Mason in last Thursday stopped by the bedside to chat. He confided in us that the events that took place were very frightening. They did not hesitate to call for help and thank goodness everything worked out. He said it gave them all a good scare to say the least.
Overall, most people have been compassionate over what happened to Little Mason. So many have been happy to hear that he had made it through one more operation and have stopped by to say so. I did have a difficult moment when one of the NP's spoke to me yesterday and felt a need to go into CYA mode by pointing out that parents sign the consent form and hear about all the possible things that could happen but don't really think or understand that they could happen. This comment came after the current nurse Mason had was really being too aggressive in how she was handling him and I just about lost it. I had tears in my eyes and the NP came by to check on us, in turn we started talking about Mason's cardiac arrest event and I told her we didn't lack confidence but rather were a little afraid. She then proceeded to tell me that she had worked with Dr. Hanley and Dr. Reddy since 1992 and this had happened only about 3 other times-she said she may have added an extra to them. I expressed to her that Physician's Assistant Quong, had made it a point to explain how important it was to be careful at the chest opening, how this is what took so long and that we were disappointed that it happened then. She said, "But, we were careful." Well, obviously her careful and my careful are two different things. I really was upset that this had to be said. It took me most of the night to forget about it. Some people have foot in mouth disease at the worst time.
If all goes well, Mason may be moved to another less critical care floor tomorrow. Meanwhile, Ernie and I will go to RMH to get some rest and trust our nurse, Teagan, to take care of Mason tonight. We couldn't ask for a better nurse. Ernie leaves tomorrow, looks like we will be in the hospital for Christmas after all....
Ernie and I waited in the parent lounge and snoozed off and on. We passed some of the time watching the construction workers caulk, cut JumboTex, and fit wire mesh outside the window. They were in no hurry, while we just couldn't wait to hear from Dr. Hanley. Around 1:30 we were informed Dr. Hanley would be coming out to speak to us. The feeling in my stomach was like a bunch of bees churning in their hive. When Dr. Hanley came in, he looked happy and left the door to the small waiting room open. This had to be a good sign and in fact it was. He told us that everything went well. Mason had his bi-directional Glenn and there was no need to do major work to his pulmonary artery. The shunt had been removed and the "tenting" that was observed resolved(layed flat) once the shunt was removed. He told us that he probed the pulmonary artery and it appeared all was fine-no narrowing. Little Mason did not have to go on heart-lung bypass (CPB)! We joined Mason on the floor approximately 50 minutes later, where we found him coming out of sedation. The nurse gave him morphine but it had virtually no effect on him. His sedative was increased and this helped make him comfortable. The majority of the day was spent weaning down his oxygen and medications for a quick extubation that evening. It was explained that patients do better after the Glenn if they are removed from the ventilator quickly. At approximately 8:10pm his breathing tube was removed and he was breathing on his own. Not happily, mind you. Although I don't know, it appears difficult to have to breathe on your own when you chest hurts and a machine has been trying to do it for you. It took some doses of pain Medication to help get Mason calm, which in turn helped him breathe better. This kid is so tough the morphine doesn't even phase him.
Dr. Maeda, the fellow, who cut Mason's aorta performed the initial chest opening again today. For several days after last Thursday he had been walking around with a rather sullen look. He often took time to console us, stopping by to check on us. I am sure he felt terrible over what occurred. When we all heard the results of the MRI were good news, it was like we all could breathe again. We have never felt any anger towards him and we genuinely like him a lot.
One of the anesthesiologists who took Mason in last Thursday stopped by the bedside to chat. He confided in us that the events that took place were very frightening. They did not hesitate to call for help and thank goodness everything worked out. He said it gave them all a good scare to say the least.
Overall, most people have been compassionate over what happened to Little Mason. So many have been happy to hear that he had made it through one more operation and have stopped by to say so. I did have a difficult moment when one of the NP's spoke to me yesterday and felt a need to go into CYA mode by pointing out that parents sign the consent form and hear about all the possible things that could happen but don't really think or understand that they could happen. This comment came after the current nurse Mason had was really being too aggressive in how she was handling him and I just about lost it. I had tears in my eyes and the NP came by to check on us, in turn we started talking about Mason's cardiac arrest event and I told her we didn't lack confidence but rather were a little afraid. She then proceeded to tell me that she had worked with Dr. Hanley and Dr. Reddy since 1992 and this had happened only about 3 other times-she said she may have added an extra to them. I expressed to her that Physician's Assistant Quong, had made it a point to explain how important it was to be careful at the chest opening, how this is what took so long and that we were disappointed that it happened then. She said, "But, we were careful." Well, obviously her careful and my careful are two different things. I really was upset that this had to be said. It took me most of the night to forget about it. Some people have foot in mouth disease at the worst time.
If all goes well, Mason may be moved to another less critical care floor tomorrow. Meanwhile, Ernie and I will go to RMH to get some rest and trust our nurse, Teagan, to take care of Mason tonight. We couldn't ask for a better nurse. Ernie leaves tomorrow, looks like we will be in the hospital for Christmas after all....
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