Maddox sleeping peacefully with his sea horse that plays lullabies
Saturday, April 9, 2011
Progress Report--April 9, 2011
Maddox had some struggles today as there was a constant battle to keep his saturation levels stable. He had a lot going on today. First, his breathing tube migrated up just a bit so it had to be moved back down. Second, a tube that had been placed in his stomach to act as a drain following one of his surgeries was removed. Also, while on ECMO and a few days after, he had to remain essentially in the same position. After 16 days they were finally able to adjust his position. As expected he did not like this. These different adjustments made him very irritable thus making it difficult for his numbers to remain stable. Overall though, he is about the same as before. They are trying to wean him off some of the oxygen support that he is on although not much progress was made today. We continue to take it a day at a time and the doctors continue to move at the pace that Maddox sets. He is the boss. He did enjoy the visit of family and friends that traveled from Florida, Dallas, Grand Prairie and Corsicana. Tonight he finally calmed down with the help of his new friend.
Friday, April 8, 2011
Update-April 8, 2011
We left you with Maddox being on four medications to control his blood pressure. He was also placed on nitric oxide. This is typically given to open the blood vessels so blood can flow. To no surprise it didn't work for Maddox since his hypertension is the result of an abnormality or structural damage with his blood vessels in the lungs. Thankfully though, his blood pressure is now under control. In fact, up to this point, they have weened him off two of the medications completely and have started working toward weening him off the other two. His blood pressure has been stable. Our hope is that it will remain as such and eventually come off all blood pressure medications. This is important because as long as he is on blood pressure medication he cannot have his mom's milk. Right now he has to rely on a nutritional mix that has been formulated called TPN. Prolonged use of TPN does cause liver damage.
While we are able to celebrate the success with his blood pressure there is yet another issue. His oxygenation has been a concern. Currently, he is needing the full support of the ventilator (100 %) to maintain acceptable saturation levels (the measure of oxygen he has in his blood). This is concerning because should those levels drop there is no room to increase the support, not to mention too much oxygen can have adverse side effects on the eyes and brain. The doctor informed us that Maddox is border line for needing ECMO. This was very disconcerting because prior to his coming off ECMO, the surgeon explained that he would not be a likely candidate for a return to ECMO. So as you can imagine the anxiety and concern for our son that is resting upon our shoulders is heavy. The thought is now that his blood pressure is under control and they have somewhat of a handle on his fluid management, other things will fall into place. A pulmonary specialist came by to examine Maddox and gave the go ahead to try a different medication to try to dilate or open up the blood vessels. You would never believe the medication: a form of Viagra. Evidently this medication works great in newborns that have problems with hypertension. Throughout all of this, Maddox is still fighting and we know it will be a matter of time before we are taking him home. Today, we saw signs of a regular newborn--irritability and fussy :) Although he's not able to vocalize himself due to the breathing tube, he let us know by facial expressions (crying) and body movement that he didn't like what was going on. It's heartbreaking because we still cannot hold our son to comfort him like we would want to. Once he becomes more stable then we will be able to hold him. Hopefully that will be soon.
Also, we have to tell you about something cool that happened to us. As you may remember from a previous post, Maddox's doctor has her own reality show on TLC called 'The Little Couple'. For a couple of days, her camera crew was here following her around taping for the new season. Well they actually interviewed us for one of the episodes. We had an opportunity to talk about CDH, Maddox, etc. The new season starts in May/June so look out for us.......We told Maddox that he's only been here two weeks and already making his mom and dad famous (maybe a sign of things to come? :)
While we are able to celebrate the success with his blood pressure there is yet another issue. His oxygenation has been a concern. Currently, he is needing the full support of the ventilator (100 %) to maintain acceptable saturation levels (the measure of oxygen he has in his blood). This is concerning because should those levels drop there is no room to increase the support, not to mention too much oxygen can have adverse side effects on the eyes and brain. The doctor informed us that Maddox is border line for needing ECMO. This was very disconcerting because prior to his coming off ECMO, the surgeon explained that he would not be a likely candidate for a return to ECMO. So as you can imagine the anxiety and concern for our son that is resting upon our shoulders is heavy. The thought is now that his blood pressure is under control and they have somewhat of a handle on his fluid management, other things will fall into place. A pulmonary specialist came by to examine Maddox and gave the go ahead to try a different medication to try to dilate or open up the blood vessels. You would never believe the medication: a form of Viagra. Evidently this medication works great in newborns that have problems with hypertension. Throughout all of this, Maddox is still fighting and we know it will be a matter of time before we are taking him home. Today, we saw signs of a regular newborn--irritability and fussy :) Although he's not able to vocalize himself due to the breathing tube, he let us know by facial expressions (crying) and body movement that he didn't like what was going on. It's heartbreaking because we still cannot hold our son to comfort him like we would want to. Once he becomes more stable then we will be able to hold him. Hopefully that will be soon.
Also, we have to tell you about something cool that happened to us. As you may remember from a previous post, Maddox's doctor has her own reality show on TLC called 'The Little Couple'. For a couple of days, her camera crew was here following her around taping for the new season. Well they actually interviewed us for one of the episodes. We had an opportunity to talk about CDH, Maddox, etc. The new season starts in May/June so look out for us.......We told Maddox that he's only been here two weeks and already making his mom and dad famous (maybe a sign of things to come? :)
Dr. Jen Arnold and Maddox
Maddox sound asleep today
Day 1 After ECMO.. April 6, 2011
The ups and downs continue.....While we were happy that Maddox came off ECMO, we knew there would be tough waters to tread. That was certainly the case. Maddox came off ECMO April 5th. We went to bed with a measure of relief that night only to awaken to bad news. His blood pressure dropped over night and it was alarming to doctors. The low blood pressure caused a chain reaction of other problems and completely threw his unbalanced system off even more. Without the right amount of blood going through his lungs it would only be a matter of time before they ran into oxygenation issues. We mentioned that Maddox came off ECMO on a ventilator called an oscillator which would cause his lungs to stay open all the time as air passed through. One of the risks is that it can sometimes be hard to push blood through the lungs thus causing pulmonary hypertension. This was the case with Maddox. We must say that this was a risk that had to be taken because the oscillator was the only way Maddox was coming off ECMO alive. They worked relentlessly all day to try to get it raised. Since he was born, his blood pressure had been on the low side but they were able to control it with medication. Now that medication no longer did the job. They tried another medication on top of the one he was already on and that was unsuccessful. They then went to a third and that was also unsuccessful. Against reservation, Maddox was put on a fourth medication. By the end of the day he was on four different medications simultaneously for blood pressure with all of them just about maxed out. This was in addition to a couple of antibiotics that he was on due to previous surgeries. They were able to get his blood pressure under control. The bad thing is that it took four medications to do it.
Tuesday, April 5, 2011
Maddox coming off ECMO... April 5, 2011
At 9:30 am we were met by Dr. Arnold with much concern. Maddox continued to bleed. In fact, he started to bleed from new sites. Maddox needed to come off ECMO. Each morning at 10 am several attending physicians, surgeons, directors, a professor and other doctors from other disciplines meet to talk about Maddox; his progress and care for the day. Each day we are present at those rounds to listen. Today there was a sense of urgency about our son. His bleeding was out of control. It was time for Maddox to show what he could do. He was coming off ECMO. We must say that while his numbers were not great for someone to come off ECMO, they were acceptable. The flow of the machine was at 50 (lowest) and his blood gases looked good. Typically, when someone is coming off ECMO, a trial is done to make sure they are ready. In our son's case, there would be no trial. He was coming off whether he was ready or not. As you could imagine this was really stressful and scary. Thoughts went through our head 'would this be the last time that we would see our son alive?' The fact of the matter is that only 50 percent of babies make it off ECMO. Counting the time he was placed on ECMO, this would actually be his 5th surgery. Maddox's first surgery was when he was placed on ECMO. He had to get the ECMO canulas connected to his artery and vein in his neck. The other 3 surgeries were previously mentioned in the blogs. The operation to remove the canulas from Maddox' neck was done by a one of Dr O's partners' named Dr Lee. He's really good too. He's one of the 3 that handles CDH surgeries on the team. We spent as much time with Maddox as we possibly could. We read the daily text together and how fitting it was Psalm 65:2. We prayed together and now it was time to wait......
Several hours later, Dr. Arnold came to us and brought the great news to us that Maddox operation was successful and he's tolerating being off ECMO. He's completely relying on the ventilator. That means his lungs are working some. Before getting off ECMO they decided to change from the conventional ventilator to one called an oscillator. The thought was that his lungs would receive optimum support from this one. It's a gentle type of ventilator that jiggles air into the lungs and keeps them open to allow air to pass through quickly. Their thoughts were correct. He responded well to this ventilator. The oxygen support that he needs is a little higher than they want but they'll work to get that down some. Nonetheless, today was a big day for Maddox. This is a HUGE hurdle that Maddox overcame. After 13 days, he is finally off ECMO. Our son is continually fighting and he's doing such a great job at it. Although we aren't out of the woods, we still have ways to go for his lungs to work on their own. Thanks to all of the prayers and thoughts that were made in Maddox's behalf. Thanks to Jehovah! :)
Below are some pictures of Maddox's after ECMO. It's so wonderful to see him off of the machine!!
Several hours later, Dr. Arnold came to us and brought the great news to us that Maddox operation was successful and he's tolerating being off ECMO. He's completely relying on the ventilator. That means his lungs are working some. Before getting off ECMO they decided to change from the conventional ventilator to one called an oscillator. The thought was that his lungs would receive optimum support from this one. It's a gentle type of ventilator that jiggles air into the lungs and keeps them open to allow air to pass through quickly. Their thoughts were correct. He responded well to this ventilator. The oxygen support that he needs is a little higher than they want but they'll work to get that down some. Nonetheless, today was a big day for Maddox. This is a HUGE hurdle that Maddox overcame. After 13 days, he is finally off ECMO. Our son is continually fighting and he's doing such a great job at it. Although we aren't out of the woods, we still have ways to go for his lungs to work on their own. Thanks to all of the prayers and thoughts that were made in Maddox's behalf. Thanks to Jehovah! :)
Below are some pictures of Maddox's after ECMO. It's so wonderful to see him off of the machine!!
The oscillator machine to the left.
Nice to see full head of hair.. :)
Dr. Jen Arnold
Every day here we learn new medical terminology. I learned that on each baby, there's an attending physician, fellow, and a doctor completing their residency. The attending physician has completed their fellowship and residency and supervises the others. That's pretty much the description in a nutshell. In this case they all belong to the Neonatologist group that cares for babies in the NICU. However, in Maddox's case, he doesn't have a residency doctor. Last week the attending physician was Dr. Gillory. She was awesome and worked non stop on Maddox's care. This month of April, to my pleasant surprise, Dr Jen Arnold is Maddox's attending physician. I watched her show on TLC network called "The Little Couple".
http://tlc.howstuffworks.com/tv/little-couple/about-the-little-couple.htm
Most of you probably may have seen their show. It's really interesting and I enjoy watching them. She can really empathize with children as she herself had about 27 surgeries growing up. She is extremely sweet and very respectful in person! She's doing an amazing job in caring for Maddox. She's really good at what she does!! I got the chance to take a picture with her. Below is a picture from today. :)
http://tlc.howstuffworks.com/tv/little-couple/about-the-little-couple.htm
Most of you probably may have seen their show. It's really interesting and I enjoy watching them. She can really empathize with children as she herself had about 27 surgeries growing up. She is extremely sweet and very respectful in person! She's doing an amazing job in caring for Maddox. She's really good at what she does!! I got the chance to take a picture with her. Below is a picture from today. :)
Monday, April 4, 2011
Update - Monday, April 4, 2011
As was mentioned previously, the doctors are working on a plan to ween Maddox off ECMO. The ECMO machine is what's keeping him alive and are doing the function of his heart and lungs. So it's pretty scary to hear that they are wanting to get him off of ECMO as soon as they can. But they need to challenge his lungs and to test if he's ready to get off ECMO. The typical run on ECMO is 10-14 days. Maddox is on day 12 so it's time to make an attempt. It's crucial on getting him off of ECMO because he will continue to bleed in the area where he had his surgeries. Also, staying on ECMO presents another host of problems that can potentially harm Maddox. In order for the machine to function, Heparin (blood thinner) is fed through the circuit to prevent the machine from clotting. For someone that just had surgery, blood thinner is the last thing that you want. It's a delicate balance to say the least. They have to put just enough heparin in the machine so will not clot but not put too much or Maddox will continually bleed out.
Today Maddox isn't doing too well. He's been bleeding alot in different areas. The doctors said the only way to stop the bleeding is for him to get off of ECMO. The doctors were concerned with his bleeding so they ordered Maddox to have a head ultrasound to see if he has any bleeding in his head. And the test came back negative. Whew!!!! Since early this morning, they gradually lowered the flow of the ECMO from 130 down to 80. It has been 80 since 4 pm this afternoon. The lowest they can go with the flow is 50. Which means the lower the flow, the less support that is given to Maddox. In turn, Maddox lungs are working and is tollerating the less support on ECMO. This is good news. The ENT came and put a new breathing tube with a cuff down his throat. The new tube is helping with eliminating the leakage of air that was a problem with the last tube. This tube goes toward his lungs and to help inflate it so it can work. Evidently Maddox didn't like the hassle of the new tube and so his saturation numbers went really low to the 70s. Maddox doesn't really like to be bothered and is very sensitive. So the doctors decided to wait till tomorrow to ween him off of ECMO while Maddox's numbers are at it's best. The trial off ECMO will be done tomorrow. This is done where they clamp down on the circuit so the flow is not giving any support to Maddox for 20 mins first and they will do a blood gas every 5 mins to see how he tolerates it. And if he does well they will do it for several hours and his ventilator support has to be at a setting of 50 or lower. Because when Maddox gets off of ECMO, the only thing that will support him is the ventilator. They will need room to work with in case he needs more ventilator support. The highest setting for the ventilator is 100. All of these factors is what contribute to the final decision that he is ready to come off ECMO. If he can't get off of ECMO, then they will have to change the circuit because currently the circuit has some blood clots in it. Please continue to pray that Maddox lungs are strong enough to get off of the ECMO machine tomorrow. It's definitely a roller coaster. Maddox is fighting and is hanging in there. We love him sooo much!!! He was sleeping so peacefully tonight. He's such a beauty! Awwww..... :)
Below are some pictures to get an idea how the ECMO machine looks and how Maddox's room is set up...
Today Maddox isn't doing too well. He's been bleeding alot in different areas. The doctors said the only way to stop the bleeding is for him to get off of ECMO. The doctors were concerned with his bleeding so they ordered Maddox to have a head ultrasound to see if he has any bleeding in his head. And the test came back negative. Whew!!!! Since early this morning, they gradually lowered the flow of the ECMO from 130 down to 80. It has been 80 since 4 pm this afternoon. The lowest they can go with the flow is 50. Which means the lower the flow, the less support that is given to Maddox. In turn, Maddox lungs are working and is tollerating the less support on ECMO. This is good news. The ENT came and put a new breathing tube with a cuff down his throat. The new tube is helping with eliminating the leakage of air that was a problem with the last tube. This tube goes toward his lungs and to help inflate it so it can work. Evidently Maddox didn't like the hassle of the new tube and so his saturation numbers went really low to the 70s. Maddox doesn't really like to be bothered and is very sensitive. So the doctors decided to wait till tomorrow to ween him off of ECMO while Maddox's numbers are at it's best. The trial off ECMO will be done tomorrow. This is done where they clamp down on the circuit so the flow is not giving any support to Maddox for 20 mins first and they will do a blood gas every 5 mins to see how he tolerates it. And if he does well they will do it for several hours and his ventilator support has to be at a setting of 50 or lower. Because when Maddox gets off of ECMO, the only thing that will support him is the ventilator. They will need room to work with in case he needs more ventilator support. The highest setting for the ventilator is 100. All of these factors is what contribute to the final decision that he is ready to come off ECMO. If he can't get off of ECMO, then they will have to change the circuit because currently the circuit has some blood clots in it. Please continue to pray that Maddox lungs are strong enough to get off of the ECMO machine tomorrow. It's definitely a roller coaster. Maddox is fighting and is hanging in there. We love him sooo much!!! He was sleeping so peacefully tonight. He's such a beauty! Awwww..... :)
Below are some pictures to get an idea how the ECMO machine looks and how Maddox's room is set up...
Maddox is connected to the ECMO machine below. : - (
A very sweet nurse name Carleen made a name tag for Maddox. Purple is for team Maddox belong to.
The machine to the left is the ventilator.
Saturday, April 2, 2011
Progressing....:) April 2, 2011
Maddox is doing better today. His numbers and stats are stable. His urine output is working as it should. Dr Cass spoke to me today and said that they are happy with his progress thus far considering his previous surgery. So far no new complications have arisen. We are very happy about that. Now they are working on trying to recruit his lungs to work on their own so they can eventually start weening him off ECMO.
We just got back from Maddox and he was awake and alert for almost 45 mins! Little man is just too funny. His eyes were bright and wide open. His eyes are the most beautiful thing ever. It pierces our soul to the core. We are so proud of him. He just loved hearing both his mommy and daddy's voice. He loves to listen to his dad read to him. He knows for sure that we both love him so much and we will always be by his side cheering him on. He's such a strong baby and continues to fight! : ) Maddox has a long way to go but we have faith he will get there. Looking forward to the day we can take him home.
Below are some pictures we took tonight with the camera phone. It's a bit blurry...
We just got back from Maddox and he was awake and alert for almost 45 mins! Little man is just too funny. His eyes were bright and wide open. His eyes are the most beautiful thing ever. It pierces our soul to the core. We are so proud of him. He just loved hearing both his mommy and daddy's voice. He loves to listen to his dad read to him. He knows for sure that we both love him so much and we will always be by his side cheering him on. He's such a strong baby and continues to fight! : ) Maddox has a long way to go but we have faith he will get there. Looking forward to the day we can take him home.
Below are some pictures we took tonight with the camera phone. It's a bit blurry...
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