Saturday, April 16, 2011
Funeral Arrangements
Saturday, April 23, 2011
1:00 PM
Kingdom Hall of Jehovah's Witnesses
2101 E. Mayfield Rd. Arlington, TX 76014
Thank you so much for your prayers and support.
Tawa and Jenny
Tuesday, April 12, 2011
Our Beautiful Precious Baby Boy Maddox..... April 11, 2011
This is the most difficult entry.....
After a restless night of sleep, we hastily make our way to our son's bedside. The hope is that his numbers have rebounded and Maddox is on his way to getting better. We arrive only to be disappointed. His numbers haven't improved but in reality they've become worse. The doctor who was on duty who happened to be the Director of the NICU comes into our room and gives us the second talk, a talk that no parent whats to hear let alone try to grasp. Maddox had a very rough stretch earlier and we had come to that point; there wasn't anything left that they could do. They tried a variety of acute medications but that didn't work. In fact, adding more acute medications would only make matters more complex. We were back to why we were there--the structure of our son's lungs. The volume of the lungs were ok but the formation of the blood vessels were not. They formed abnormally which is ultimately the defining thing with CDH. There just wasn't enough room in the blood vessels to get oxygen to the rest of the body.
A little later Maddox's primary doctor come into the room (Dr. Arnold). She relates how she heard Maddox had a bad weekend, would get caught up and come speak to us. We knew what that talk would comprise of but didn't want to accept it. She tells us that despite all that they are doing, Maddox is trying to die. He just can't do it any longer. His oxygen levels was in the 60s and were slowly declining. They were so low for such an extended period of time, it was probably causing irreversible internal damage. She gives us the options. Do we leave Maddox on the ventilator that he is on or do we switch ventilators, make him comfortable so we can hold him and be with him? Either way, the life in our son was slowly leaving. We had never held our son because he had always been unstable. We made the decision to switch ventilators so we could hold him and at that point it would only be a matter of time. Family and friends rushed to be by our side. They made their way from Dallas, San Antonio and here in Houston.
Holding our beautiful son Maddox for the first time was an experience we will never forget. We took turns holding him and we continued to trade off. It was truly amazing. Maddox has touched our lives and other peoples lives there at the hospital. He taught us love, the deepest love you could ever have for someone. But it was heart breaking at the same time because we knew our son was slowly dying. His heart rate and blood pressure continued to dwindle over the course of the day. His colors and features continued to change as well. We continued to tell him that Mommy and Daddy LOVED him SOOO MUCH and told him we were SOO PROUD of him. He fought HARD as long as he could. We told him we will see him in paradise and will hold him and the best thing is that he would never know what transpired. At 5:13 pm he took his last breath in his father's arms. We all couldn't stop crying. It was the most devastating thing that could happen to us, for anyone really. We continued to hold Maddox tight in our arms and continued to talk to him late in the night. Holding our lifeless son was just heartbreaking. No parent should ever go through this. The hardest thing was leaving our son and knowing that he wouldn't be coming home with us. We loved him sooo much. Words can't describe the pain we felt as we gave our Beautiful Baby Boy Maddox to his nurse.
Losing your child is the hardest thing anyone can go through. We find comfort in knowing that he's not suffering. Maddox is now in the best place--Jehovah's memory. We know we did all we could to have the best care for Maddox and we know for a fact Maddox did all he could to fight for his life. The entire staff here at Texas Children's were great from beginning to end. We are comforted in knowing he's just asleep. Oh how we yearn to see, hold and kiss him in paradise! The continued support of friends and family and most importantly the support of our God, Jehovah will continue to provide the comfort that we need.
Maddox will always be our beloved firstborn beautiful son. He gave us 19 wonderful days. We love him and miss him soooo much.
Much love to you all and thank you for your ongoing support
Tawa and Jenny Torry
After a restless night of sleep, we hastily make our way to our son's bedside. The hope is that his numbers have rebounded and Maddox is on his way to getting better. We arrive only to be disappointed. His numbers haven't improved but in reality they've become worse. The doctor who was on duty who happened to be the Director of the NICU comes into our room and gives us the second talk, a talk that no parent whats to hear let alone try to grasp. Maddox had a very rough stretch earlier and we had come to that point; there wasn't anything left that they could do. They tried a variety of acute medications but that didn't work. In fact, adding more acute medications would only make matters more complex. We were back to why we were there--the structure of our son's lungs. The volume of the lungs were ok but the formation of the blood vessels were not. They formed abnormally which is ultimately the defining thing with CDH. There just wasn't enough room in the blood vessels to get oxygen to the rest of the body.
A little later Maddox's primary doctor come into the room (Dr. Arnold). She relates how she heard Maddox had a bad weekend, would get caught up and come speak to us. We knew what that talk would comprise of but didn't want to accept it. She tells us that despite all that they are doing, Maddox is trying to die. He just can't do it any longer. His oxygen levels was in the 60s and were slowly declining. They were so low for such an extended period of time, it was probably causing irreversible internal damage. She gives us the options. Do we leave Maddox on the ventilator that he is on or do we switch ventilators, make him comfortable so we can hold him and be with him? Either way, the life in our son was slowly leaving. We had never held our son because he had always been unstable. We made the decision to switch ventilators so we could hold him and at that point it would only be a matter of time. Family and friends rushed to be by our side. They made their way from Dallas, San Antonio and here in Houston.
Holding our beautiful son Maddox for the first time was an experience we will never forget. We took turns holding him and we continued to trade off. It was truly amazing. Maddox has touched our lives and other peoples lives there at the hospital. He taught us love, the deepest love you could ever have for someone. But it was heart breaking at the same time because we knew our son was slowly dying. His heart rate and blood pressure continued to dwindle over the course of the day. His colors and features continued to change as well. We continued to tell him that Mommy and Daddy LOVED him SOOO MUCH and told him we were SOO PROUD of him. He fought HARD as long as he could. We told him we will see him in paradise and will hold him and the best thing is that he would never know what transpired. At 5:13 pm he took his last breath in his father's arms. We all couldn't stop crying. It was the most devastating thing that could happen to us, for anyone really. We continued to hold Maddox tight in our arms and continued to talk to him late in the night. Holding our lifeless son was just heartbreaking. No parent should ever go through this. The hardest thing was leaving our son and knowing that he wouldn't be coming home with us. We loved him sooo much. Words can't describe the pain we felt as we gave our Beautiful Baby Boy Maddox to his nurse.
Losing your child is the hardest thing anyone can go through. We find comfort in knowing that he's not suffering. Maddox is now in the best place--Jehovah's memory. We know we did all we could to have the best care for Maddox and we know for a fact Maddox did all he could to fight for his life. The entire staff here at Texas Children's were great from beginning to end. We are comforted in knowing he's just asleep. Oh how we yearn to see, hold and kiss him in paradise! The continued support of friends and family and most importantly the support of our God, Jehovah will continue to provide the comfort that we need.
Maddox will always be our beloved firstborn beautiful son. He gave us 19 wonderful days. We love him and miss him soooo much.
Maddox Soukanh Torry
March 23, 2011-April 11, 2011
Cozy in Dad's Arms
Tawa and Jenny Torry
7th Year Wedding Anniversary .. April 10, 2011
Our beautiful son is 18 days old and today is our anniversary. Maddox is the most precious gift for our anniversary this year. To be honest, the scripture in Psalms which speaks of children as an inheritance is something I've never come to appreciate until I became a parent. Maddox is truly an inheritance and a huge blessing. His most precious life is something we never take for granted each day we are with him. He is constantly fighting for his life. We continue to cheer him on and pray with him so he can receive the strength he need to endure. We are sooo PROUD of our son and we LOVE him more than we could ever imagine. He has come a long way and shows us how strong he is. He has overcome multiple surgeries, ECMO and a number of other things.We tell ourselves and tell Maddox that there is no way he can give up now.
Maddox is not doing too well today. Earlier today his saturation or oxygen levels went to the low 60s. It was concerning. At a minimum, the doctors wanted him to stay at 85. They would have preferred the 90s but given some issues they were trying to work through, they were content with 85. Since the day of his birth never had his numbers been so low. When he was born it was in the 50s. So that is why he was placed on ECMO. ECMO is not a route that can be repeated from a medical standpoint but even if that was possible we will not put our son through that again. His numbers did rebound to around 80 but it took a very long time. This is when the doctors had "that" talk with us. He is very sick, they've maxed out of all that they can do and the outlook is dim. Every time he moves or is handled by someone his numbers go down. So they had to raise his morphine to sedate him even more. Along with that they had to give him paralytic medication to paralyze him because when he would move, his numbers would immediately go down. Later this evening his numbers dipped to the 60s. We stayed by his side until midnight and there was no improvement. We will go visit him again in the middle of the night. The weight of our heart just fell to the floor. I can't stop crying. We both continue to pray with Maddox and repeat to Maddox that he will get through this. We need our baby son. Please continue to pray for our baby boy Maddox.
Maddox is not doing too well today. Earlier today his saturation or oxygen levels went to the low 60s. It was concerning. At a minimum, the doctors wanted him to stay at 85. They would have preferred the 90s but given some issues they were trying to work through, they were content with 85. Since the day of his birth never had his numbers been so low. When he was born it was in the 50s. So that is why he was placed on ECMO. ECMO is not a route that can be repeated from a medical standpoint but even if that was possible we will not put our son through that again. His numbers did rebound to around 80 but it took a very long time. This is when the doctors had "that" talk with us. He is very sick, they've maxed out of all that they can do and the outlook is dim. Every time he moves or is handled by someone his numbers go down. So they had to raise his morphine to sedate him even more. Along with that they had to give him paralytic medication to paralyze him because when he would move, his numbers would immediately go down. Later this evening his numbers dipped to the 60s. We stayed by his side until midnight and there was no improvement. We will go visit him again in the middle of the night. The weight of our heart just fell to the floor. I can't stop crying. We both continue to pray with Maddox and repeat to Maddox that he will get through this. We need our baby son. Please continue to pray for our baby boy Maddox.
Our son celebrates our anniversary with us.. :)
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.
Maddox sleeping peacefully with his sea horse that plays lullabies
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.. :)
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