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....
Saturday, December 13, 2008
One Tough Cookie
As many of you know, Ernie, Mason and I traveled to Palo Alto, CA on December 4th for Mason's scheduled surgery, the Glenn. We had been told we would have a clinic visit on December 5th and therefore booked our tickets far in advance. We learned that this date had changed to the 8th but decided to go ahead and come out early. We enjoyed a couple of days of peacefulness and settled in to Ronald McDonald house once again.
On Tuesday, December 9th Mason underwent is catheritization surgery in which they were checking the pressures in his pulmonary artery and right ventricle. They looked good and everyone decided it was a go for his Glenn surgery that was scheduled for this surgery. In this next phase the blood returning from the head would be directed bi-directionally to both lungs where it would then pick up oxygen before being sent back to the right ventricle before being pumped out to the body. This was supposed to be the "easiest" of the 3 stage surgeries.
We were told that we were second in line for surgery on Thursday, which means that there would be a slim chance that he would get in. No big deal, as we were "seasoned" veterans to the surgery schedule and knew what to expect. Wednesday night around 9:00pm one of the surgical team members called us and told us we were moved up to first on the surgical schedule. Mason would be going in after all!
Thursday morning came and with complete confidence we walked Mason to the OR and turned him over to the cardiac anesthiosologist. We were expecting an approximate 4 -5 hour surgery and settled in to the new surgical waiting area. At approximately 12:00 pm we were told to expect Dr. Hanley to come down and speak with us in approximately 20 minutes. Upon his arrival he greeted us and then proceeded to take us to the "HIPPA" room where we sat down to await what we thought would be good news. Dr. Hanley began with stating that "We had to change the plan". I didn't think this was a big deal as Mason had demonstrated some tenting in his pulmunoary artery on his echo and I thought he would be discussing how they had to fix this a s well. Instead he shocked us by letting us know that while the fellow, Dr. Maeda, was entering Mason's heart his aorta was cut. They had to take immediate measures to save his life, which included placing him on the heart lung bypass machine and profuse him with blood. Dr. Hanley said he had been on his way down to speak with us when the immediately called him to the OR. He also stated that he thought Mason had been in this state for approximately 5 minutes and that he was extremely opptomistic that everything would be fine. He even said he thought they would be able to go back in and do the Glenn the next day. No, they didn't even do the surgery which was scheduled as they were too busy saving little Mason's life. We had previously been told by the physician's assistant, Dr. Quang, that entering the chest was a very critical procedure and this was undertaken with utmost care since the scar tissue is so close to the heart. The one thing that he stressed was what took so long to get into the chest and that was so critical was what went wrong.
After speaking with one of the nurses, Michelle, she understood that Mason's neo aorta was cut and then subsequently ruptured. Nevertheless, since this devasting event the plan for his surgery and care has changed several times. We will no longer have the surgery this week but instead will wait for and MRI on Monday to determine if there has been any damage to his brain. The Glenn surgery places more pressure on the brain as it changes the distribution of blood and therefore there is concern on whether or not to proceed with the Glenn right away.
Mason has proven that he is just a trooper. He was extubated at 6:05 pm last night and has been taken completely off of nasual canula oxygen today and is breathing room air. During his immediate post-operative stay he was taken completely off of all pain and paralytic medications to determine if he had movement and was acting like he should. Of course, this little boy did that-show them he is tough. When Carolyn from the chaplainship came in and annointed him with healing oil his body knew it was time and within a few minutes he began to move and open his eyes. This little boy has angels helping him through it all. Shortly after, his pain medications were then added back on in part. They have since started to wean him off of any continous medications and he is being given doses as needed. His feeding through the g-tube started with 3mls per hour at midnight on Friday and have increased to 30mls per hour continuously today.
That first day was completely draining and both Ernie and I feel our bodies totally drained. The stress has given us what no-work out could, complete utter exhaustion. Keep Mason in your prayers...he needs it now more than ever.
Mason is such a favorite around here and we have received all sorts of well wishes and words of encouragement. We know all those thoughts and prayers are helping him pull through.
On Tuesday, December 9th Mason underwent is catheritization surgery in which they were checking the pressures in his pulmonary artery and right ventricle. They looked good and everyone decided it was a go for his Glenn surgery that was scheduled for this surgery. In this next phase the blood returning from the head would be directed bi-directionally to both lungs where it would then pick up oxygen before being sent back to the right ventricle before being pumped out to the body. This was supposed to be the "easiest" of the 3 stage surgeries.
We were told that we were second in line for surgery on Thursday, which means that there would be a slim chance that he would get in. No big deal, as we were "seasoned" veterans to the surgery schedule and knew what to expect. Wednesday night around 9:00pm one of the surgical team members called us and told us we were moved up to first on the surgical schedule. Mason would be going in after all!
Thursday morning came and with complete confidence we walked Mason to the OR and turned him over to the cardiac anesthiosologist. We were expecting an approximate 4 -5 hour surgery and settled in to the new surgical waiting area. At approximately 12:00 pm we were told to expect Dr. Hanley to come down and speak with us in approximately 20 minutes. Upon his arrival he greeted us and then proceeded to take us to the "HIPPA" room where we sat down to await what we thought would be good news. Dr. Hanley began with stating that "We had to change the plan". I didn't think this was a big deal as Mason had demonstrated some tenting in his pulmunoary artery on his echo and I thought he would be discussing how they had to fix this a s well. Instead he shocked us by letting us know that while the fellow, Dr. Maeda, was entering Mason's heart his aorta was cut. They had to take immediate measures to save his life, which included placing him on the heart lung bypass machine and profuse him with blood. Dr. Hanley said he had been on his way down to speak with us when the immediately called him to the OR. He also stated that he thought Mason had been in this state for approximately 5 minutes and that he was extremely opptomistic that everything would be fine. He even said he thought they would be able to go back in and do the Glenn the next day. No, they didn't even do the surgery which was scheduled as they were too busy saving little Mason's life. We had previously been told by the physician's assistant, Dr. Quang, that entering the chest was a very critical procedure and this was undertaken with utmost care since the scar tissue is so close to the heart. The one thing that he stressed was what took so long to get into the chest and that was so critical was what went wrong.
After speaking with one of the nurses, Michelle, she understood that Mason's neo aorta was cut and then subsequently ruptured. Nevertheless, since this devasting event the plan for his surgery and care has changed several times. We will no longer have the surgery this week but instead will wait for and MRI on Monday to determine if there has been any damage to his brain. The Glenn surgery places more pressure on the brain as it changes the distribution of blood and therefore there is concern on whether or not to proceed with the Glenn right away.
Mason has proven that he is just a trooper. He was extubated at 6:05 pm last night and has been taken completely off of nasual canula oxygen today and is breathing room air. During his immediate post-operative stay he was taken completely off of all pain and paralytic medications to determine if he had movement and was acting like he should. Of course, this little boy did that-show them he is tough. When Carolyn from the chaplainship came in and annointed him with healing oil his body knew it was time and within a few minutes he began to move and open his eyes. This little boy has angels helping him through it all. Shortly after, his pain medications were then added back on in part. They have since started to wean him off of any continous medications and he is being given doses as needed. His feeding through the g-tube started with 3mls per hour at midnight on Friday and have increased to 30mls per hour continuously today.
That first day was completely draining and both Ernie and I feel our bodies totally drained. The stress has given us what no-work out could, complete utter exhaustion. Keep Mason in your prayers...he needs it now more than ever.
Mason is such a favorite around here and we have received all sorts of well wishes and words of encouragement. We know all those thoughts and prayers are helping him pull through.
Tuesday, November 11, 2008
Life in the fast lane
As you all know we were discharged from UNM back on October 15th. Since then it has been a blurr of feeding, meds, sleeping, staying up, not sleeping, running the kids to catechism, helping with homework, celebrating Jordyn's birthday, dealing with insurance, dealing with paperwork and a myriad of things related to just existing! Mason is doing just great! He is over 11 pounds now and his 02 levels remain around 84%. We are scheduled for his next surgery on December 11th. We will need to be in California by December 4th for his consult and catherization, prior to surgery.
I have a hard time believing he still needs another two surgeries. He looks just like any other baby, except for the scars and g-tube. On the 5th he received his Synagis shot. This helps to protect him against RSV, which is very prevalant in our area beginning in November. One of the nurses at Stanford told us the monthly shot cost is $1700.00. That is $1700.00 a shot! I haven't bothered to inquire if this is true, but I don't doubt it. We requested a summary of charges upon our discharge from Stanford and they were over $1 million. That was even before the medical transport to UNM. He truly is our million dollar baby.
Mason really doesn't require too many medications but it is a little challenging to make sure he has them at the right times. They are as follows:
8:00 am Captopril/Reglan
10:00 am Lasix/Prevacid
4:00 pm Captopril/Reglan
10:00 pm Lasix/Prevacid/Aspirin
12:00 pm Captopril/Reglan
There is only one pharmacy in town that can provide his meds, Silver Rexall. I didn't even know this pharmacy existed, but thank God it does. Ernie is in charge of dispensing/preparing all the mediations and I am in charge of dosing Mason. They all go through his g-tube, which is the best benefit of having the g-tube. I don't think I could have imagined saying that before! Regarding his feeding schedule, he is currently feeding for 2+ hours and has an approximate 45 minute break. We have a mini backpack with a small pump which we can carry anywhere, this allows us to take him along even while feeding. Of course, we limit his visits out to stay away from all those germs!
Our last visit to UNM on 10/24 went very well. Mason looked great and doesn't need to be seen until later this month. He has two separate appts, one with the GI doc and the other with the cardiologist. These visits to Albuquerque are a bit costly but we simply don't have a choice since he needs the specialty care.
Our local pediatrician, Dr. Etheridge, had scheduled home health visits for twice a week. I let him know after the first 2 weeks that this was not necessary since the nurse was just repeating everything I had been doing on a daily basis. That is weight and 02 levels. We are enrolled in the home monitoring program at Stanford and therefore I have been keeping track of this data to provide to them on their weekly call. As I mentioned before, it is critical that he gain an appropriate amount of weight before the next surgery. It looks good so far.
The kids just adore their baby brother. Jordyn keeps asking why a baby so cute and sweet as Mason had to have heart surgery. Of course, there isn't an answer but we have long ago stopped wondering why. Actually, I'm not so sure I even remember asking why but asked God to help us through instead. At least, that is what I recall now and it seems like a great plan for the future.
I have a hard time believing he still needs another two surgeries. He looks just like any other baby, except for the scars and g-tube. On the 5th he received his Synagis shot. This helps to protect him against RSV, which is very prevalant in our area beginning in November. One of the nurses at Stanford told us the monthly shot cost is $1700.00. That is $1700.00 a shot! I haven't bothered to inquire if this is true, but I don't doubt it. We requested a summary of charges upon our discharge from Stanford and they were over $1 million. That was even before the medical transport to UNM. He truly is our million dollar baby.
Mason really doesn't require too many medications but it is a little challenging to make sure he has them at the right times. They are as follows:
8:00 am Captopril/Reglan
10:00 am Lasix/Prevacid
4:00 pm Captopril/Reglan
10:00 pm Lasix/Prevacid/Aspirin
12:00 pm Captopril/Reglan
There is only one pharmacy in town that can provide his meds, Silver Rexall. I didn't even know this pharmacy existed, but thank God it does. Ernie is in charge of dispensing/preparing all the mediations and I am in charge of dosing Mason. They all go through his g-tube, which is the best benefit of having the g-tube. I don't think I could have imagined saying that before! Regarding his feeding schedule, he is currently feeding for 2+ hours and has an approximate 45 minute break. We have a mini backpack with a small pump which we can carry anywhere, this allows us to take him along even while feeding. Of course, we limit his visits out to stay away from all those germs!
Our last visit to UNM on 10/24 went very well. Mason looked great and doesn't need to be seen until later this month. He has two separate appts, one with the GI doc and the other with the cardiologist. These visits to Albuquerque are a bit costly but we simply don't have a choice since he needs the specialty care.
Our local pediatrician, Dr. Etheridge, had scheduled home health visits for twice a week. I let him know after the first 2 weeks that this was not necessary since the nurse was just repeating everything I had been doing on a daily basis. That is weight and 02 levels. We are enrolled in the home monitoring program at Stanford and therefore I have been keeping track of this data to provide to them on their weekly call. As I mentioned before, it is critical that he gain an appropriate amount of weight before the next surgery. It looks good so far.
The kids just adore their baby brother. Jordyn keeps asking why a baby so cute and sweet as Mason had to have heart surgery. Of course, there isn't an answer but we have long ago stopped wondering why. Actually, I'm not so sure I even remember asking why but asked God to help us through instead. At least, that is what I recall now and it seems like a great plan for the future.
Subscribe to:
Posts (Atom)