A friend of mine, we'll call him Reorge Rebran to protect his identity, while on a road trip to "Shmew Shmexico" told me "the best time to speed is going uphill." Reorge's advice was for avoiding law enforcement speed traps, which are usually at the bottom of hills, but I think it also serves as a good metaphor for Jude's progress this past week. Jude is facing an uphill battle but he's been speeding up that hill.
After his rough Monday night last week, Tracy and I were much more guarded in regards to Jude's health. The fine line between reality and hope is faith. Tracy and I have done our best to fight the good fight and stay faithful. We have had immense support from all over the country from close family members to nameless faces. We have received emails, text messages, and phone calls all in support of Jude and ourselves. We have also received financial support in the form of gift cards, money, and an overload of good food that's been brought to the Mitchell's. We've been told by some that Jude's story brings them hope and has reignited their faith. Whether it was encouraging to us or others, the last three weeks have shown how God can work in difficult situations to show His love and build up faith.
Most importantly, Jude has been benefiting from the encouragement and prayers as well. Since his rough night on Monday he has continued to climb back up the health scale. The reports from the doctors and nurses have continued to be positive. Jude is being weened down on his ventilator daily. The blood gases, which is a blood draw that reveal the oxygenation in his blood, CO2 levels, ect. have been steadily good. He has gained some weight, a little over half a pound, in the last week. He is still being fed at the moment though, due to the complications that arose last week from feeding. Overall, Jude is doing quite well.
We have no updates on when the surgery to remove his taratoma will take place. We have been told that a meeting will take place tomorrow between the ENT's, plastic surgeons, and Neonatal doctors to discuss possible options. We are eager for the meeting to occur but we are also aware the meeting may not bring any new answers. Doctors have informed us that the meeting is a "progress report" and may not yield any dates or new information for us. Like a ten-year old forced to sit on Santa's lap one last time, we reserve the right to be skeptic. We are hopeful that the meeting will at least provide us with the milestone needed to be reached for a surgery date to be set.
We are very grateful for all the love and support we have received. The toughest day-to-day challenge now is just waiting. I suspect that Tracy and I will emerge from this experience with a higher tolerance for patience. Both the short-term and long-term future of the Schinzel family is up in the air at the moment. This has been extremely difficult for me and I'm sure torture for my wife, the planner. My feelings at the moment are like an amplified version of those you feel when you sit in the waiting room at a quick-lube to change the oil in your car. I feel like I have an idea of how long it will take by the number of cars I saw in line in front of me, but I can't really say for sure because I can't control any of the variables after I hand the keys over. And so, as we handed the keys to our baby over to the doctors at birth (although we really never had the keys I suppose. Maybe I should have spent more time on a better analogy) we are sitting in the waiting room, drinking bad coffee and watching episodes of courtroom tv. At least our waiting room has a lot of friends and family stopping by to check-in.
So, for now we are hanging out in the waiting room, both figuratively and literally. All in all, things are going as good as they can be in this situation though. I feel that God is refining Tracy and I through Jude. We are learning to put Romans 8:28 into practice as well as understanding better what Paul meant in Philippians 4:11-13- "I am not saying this because I am in need, for I have learned to be content whatever the circumstances. I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do all this through him who gives me strength.
To God be the Glory,
-Chris
Monday, January 16, 2012
Wednesday, January 11, 2012
The Dude Abides
(This next paragraph will be fairly vulnerable and quite dark so the faint of heart may choose to skip to the next paragraph, however, I'm sure this footnote only makes those people more curious to read it). I have to admit, I hadn't felt that much fear and anxiety yet in my life. Tracy's OBG specialist here at Children's Mercy had told us not to take the high's too high and the low's too low, meaning Jude will have ups and downs and we should try and stay level, emotionally. It's kind of like telling an addict in recovery to just stop...little easier said than done. At the beginning of all this, I seemed to be doing ok. Like I talked about in my previous blog "Jude the Dude" I was doing my best to fight off the ANTS with Romans 8:28. However, as Jude's condition only worsened I started to lose my fight. As I sat and watched as one of the doctor's seemed to panick a little at the sight of Jude's oxygen levels dropping into dangerous levels and the respiratory therapist providing him manual ventilation the ANTS went marching on and on. I started to think about what seemed to be the inevitable. I thought about how far Jude had come only to throw it all away, it seemed. My mind took me to a place where we would be trading in his booties for a toe tag, his crib for a coffin, and a baby book for a tombstone. I thought about the fishing trips that would never happen, the special mornings where he and I would go out to breakfast, the two of us, just like my Dad and I used to, and how those would never happen. As grief overtook me, I tried desperately to hold onto Romans 8:28 and Maurice's words from just yesterday: "if you really believe this scripture then you will not doubt God's plans for you ever again." I tried so hard to hold onto these words but as the situation became more intense those words, like Tracy's doctor's, seemed easier said than done. Tracy too seemed to be having a difficult time in the moment, but who can blame her. I began to think about the people all around the country praying for Jude at that time per our requests through Facebook and texts. "If they have the faith," I thought, "then so can I ." So, I held onto the the little faith I had left inside (as if I had any other choice) and waited.
An hour or so later, Jude's condition had stabilized. His oxygen levels weren't fantastic, but they had improved significantly. The doctor who at one time seemed panicked was now in awe at how quickly Jude had recovered and climbed up the number scale with his oxygen. Doctors had replaced his trach, which happens regularly about twice a week, and put him back on the larger ventilator (they did many other things in the process but those are the two biggest events of the night regarding his care). As one doctor came over to check on Jude he asked what his oxygen levels were. Where they were once in the mid 50's, the doctor now reported he was at 80. The doctor, however, was quickly corrected by a nurse who said they were in the 90's. "Wow! How did that happen?" the doctor asked in amazement. As the nurses, doctors, and respiratory therapist shared their versions of which portion of the care had contributed to Jude's improvement I couldn't help but look on with a small grin on my face. No doubt the staff had done an amazing job in responding to Jude's need for fast, immediate care but I didn't believe, and still don't, that they alone were responsible. My mind again went back to the people all around the country praying for Jude at that moment. It seemed too coincidental to think that Jude could climb back up the health ladder so quickly from just some equipment changes in medicine. In fact, there was some slight truth presented to support this. While Jude's oxygen levels were slowly rising, one of the doctors commented that he was satisfied with Jude's levels but not exactly happy about them. He assured us that they would probably rise by morning but in cases like this it usually took about twelve hours for his numbers to get back up to "comfortable" levels. Ten minutes later, they were up. Maybe Jude's body was just catching up to the medication or just getting used to the ventilator and decided to rise to the occasion. Maybe the doctors and nurses at Children's Mercy are just that good, better than they themselves even think or profess to be. Or, maybe God responded to the prayers of multiple people around the country praying for a special boy who they all hope to meet someday.
Thinking back to the struggle to stay faithful in the moment I am reminded of Hebrews 12: 1B-2 which says: "And let us run with perseverance the race marked out for us, fixing our eyes on Jesus the author and perfecter of our faith." It made me think that at times you are going to struggle through the trials. But its the persevering that is important. Even Jesus in the Garden of Gethsemane went through this as he asked God if there were any other way that we could all be saved. In the end it all goes back to making it through the struggles and hopefully strengthening your faith. Tracy and I were able to witness what I believe the power of prayer. We are so thankful for all the love and prayers we and Jude received. Today, which is only two days later, Jude is back on the regular ventilator and back on track to recovery. Without those moments where he has to face his enemy there can be no victory in the end.
To God be ALL the Glory,
-Chris
Monday, January 9, 2012
UPDATE on Jude
UPDATE: As of midnight, central time, Jude is becoming more stable. The last two hours have been more eventful than the last two weeks (well, almost two weeks. He's only 12 days old). To sum it up the best I can without writing one of my normal, lengthy blogs: Jude has an infection. They don't know where but his blood drawing showed that he has an infection. There was blood found at his trach site, in his stool, and in his stomach and lungs. They may be all related and they may be a series of different things. Most likely, the trach site is just some misplacement trauma and the rest is related. They have given him antibiotics to treat the infection. They take twelve to twenty-four hours to kick in. The next twenty-four to seventy-two hours are crucial for Jude. They have moved him back to the larger ventilator and he is running at a 100% meaning that he is doing mostly none of the work. His oxygen levels were at fifty-four, which is terrible, and the doctor said that unless they climbed by twenty they needed a more aggressive plan. They climbed by thirty, Amen. He is currently stable at eighty which is OK but not where he needs to be at about ninety-five. However, the doctor has said that if he can stay around eighty or above for twenty-four to forty-eight hours then that's ok. There is probably other information that I am forgetting. They have taken ultra-sounds on his head and chest as well as chest x-rays. It's been quite an emotional ride sitting here watching it all happen. It felt like being on trial in a foreign country without an interpreter; you know the information being passed around is important to the future but you have no clue what is being said.
The Dude has a long long way to go before we are feeling all right about what's going on. Like I said, the next twenty-four hours or so is crucial for Jude. We are grateful he is becoming more stable but are still scared. Thanks for the prayers and words of encouragement.
To God be the Glory in All,
-Chris
The Dude has a long long way to go before we are feeling all right about what's going on. Like I said, the next twenty-four hours or so is crucial for Jude. We are grateful he is becoming more stable but are still scared. Thanks for the prayers and words of encouragement.
To God be the Glory in All,
-Chris
Jude the Dude
My sister Katie titled her last blog "Jude the Dude" because her 18 month old daughter pronounces Jude's name as "Dude." I liked the nickname so much that not only have I stolen it as my title for this blog but I am giving serious thought to making that his permanent nickname. For now, Jude the Dude it is.
It continues to be an adventurous week for the Schinzel family. Tracy and I were surprised with a free collection of broken glass in our back seat and one of those permanent open windows you read about in luxury, European auto magazines courtesy of the guy who stole my GPS. He did break up our week a little bit and afford me some time away from the hospital for a couple hours to clear my head so if that was the burglar's intent then he succeeded. On a normal week, this would have bothered me a great deal. My interest and background in law enforcement leads me to have a strong sense of justice. So, admittingly there is still a part of me this week that wishes I would have caught the thief in the act, subdued him, and held him till police arrived. This week, however, that part of me was far overshadowed by son and both the joys of his progressive recovery and the anxiety caused by his trials ahead.
We also celebrated Tracy's birthday this weekend. We had a small family party in the cafeteria preceded by Tracy getting plenty of time holding her favorite person. All in all, I think Tracy would say that nothing could overshadow this present (not even the burglary).
I suppose I would be remiss if I didn't talk about the real reason you are all reading this blog, the Dude. I had originally written an unfinished draft of this blog in which I was talking about how great the Dude was doing. Ironically the update, like Jude, would have been premature. Jude is doing OK. Prior to this evening he was doing great. He has had really good blood gases the last few days and has been climbing down on the respirator setting to the point of where he was slowly climbing towards breathing independently (not any time really soon but he was on his way). The doctors had decided that he was ready to start eating so they began feeding him through a feeding tube. This, at first, was not successful but Jude kept at it and his residual results began to improve. What are residuals? When a baby is tube fed, the nurses go back hours after the feeding and through suction, extract any residual fluid or secretion out of the baby stomach that is not being processed. Most premature babies like Jude will have some green, slimy residuals that are usually a result of secretions from the throat and different areas. These secretions are not necessarily a negative and are not alarming. When high levels of undigested milk begin appearing in the residuals, then this is a sign that the baby is not taking to the milk. Jude has been going strong and has low milk residuals, which is good. Jude also had chest x-rays a few days ago and the doctor yesterday morning said that they looked good and that Jude's lungs were developing.
By now, if you are an attentive reader you have picked up on Jude's good condition being reported in the past tense. Jude did not have a good evening. This afternoon, while Tracy was holding him, Jude vomited. This was a short time after feeding and most likely the result of an aspiration. For those of you not medically inclined, an aspiration is commonly referred to as "going down the wrong pipe." This occurrence in itself is not a reason to scrap the evening, that is true. Chest x-rays from earlier in the day that became available showed that Jude's lungs were cloudy. I'm not exactly sure what this means but unless you're a farmer waiting on rain for your crops "cloudy" is never a good thing. Jude's hemoglobin count, which had been climbing and stable, is back down. This is likely from a trach-injury which was discovered early in the evening. Nurses performing a trach-change noticed that there was blood coming from inside his throat after a suction and there was some blood in his stomach which is believed to have been a drain from his throat. His last two blood gases, which I will never understand what the numbers mean, were dumbed down for me as simply "not good." Jude likely has an infection of some kind, although everyone is quick not to tell us an assumption that might be incorrect, and the word pneumonia has been heard by these ears around his bedside. The on-call doctor this evening said that there may be a need for Jude to go back on the larger, oscillating ventilator if his condition is not improving. For now, we can just wait and pray to see what happens with Jude's condition overnight.
Despite all of this happening tonight and the ANTS (Automatic Negative Thoughts) trying to march in my head, I can't help but think about Maurice Hooks (the Lead Evangelist for the Kansas City Church of Christ) and his final point from yesterday's lesson: Romans 8:28. This scripture reads: "And we know that in all things God works for the good of those who love him, who have been called according to his purpose." Maurice concluded the scripture with this point (paraphrased of course [possibly quite poorly]): "If you really believe this scripture then you will trust that everything that has happened in the past and everything that will occur is done for your own good. If you really believe, then you will not doubt God's plans or lose faith in the future ever again." This scripture has been resounding throughout my day!!!! Every time the ANTS go marching on and on into my head I send them packing out the other side by thinking about this scripture and about Maurice's point. Again and again, I have kept going back to it. "You're GPS that was stolen is not covered by your auto insurace...." BAM! Romans 8:28 "Jude vomitted earlier and we're not sure why..." POW! Romans 8:28. And on and on throughout the day where I would normally slip into bleak thoughts and an unnecessary list of possible outcomes God disallowed this from happening through Romans 8:28. Tracy, who I think must recite this scripture subconsciously in her sleep, seems unaffected by the somewhat traumatic afternoon. Her quiet calm, which is not to be confused with distance or numbness, is a result of her freakishly strong faith.
Despite all of today, one cannot deny the amazing working of God's blessings in our lives. We were blessed to get time with Mark and Jodi Hayward last night for a few hours (for those in the KC area who know who that is and how lucky you are when you get time with the Haywards). We were engulfed in love and encouragement as we returned to church yesterday morning. The amount of encouragement and support we received was nothing short of miraculous! Though I would give nothing short of my life to take away any pain Jude has to endure, I cannot help but feel that Tracy, Jude, and I are lucky in all of this. We are lucky enough to be in a situation where God's love and the love of his family is being poured down upon his. We are truly clothed in love from God and His family. Not too many will ever get to feel THIS MUCH love and encouragement. It is an experience that is truly unique. We continue to be grateful for how God has taken care of us and provided us with really all we need. Please continue to pray for the Dude and he will do his part to get back on track. God is good and is working. It's tough to see that while you're in it. Like Jude crying after his heel getting pricked for blood tests, it's tough to understand the pain when your going through it. But just the fact that Maurice was inspired to preach a message that was so quickly applicable shows that God is present.
It continues to be an adventurous week for the Schinzel family. Tracy and I were surprised with a free collection of broken glass in our back seat and one of those permanent open windows you read about in luxury, European auto magazines courtesy of the guy who stole my GPS. He did break up our week a little bit and afford me some time away from the hospital for a couple hours to clear my head so if that was the burglar's intent then he succeeded. On a normal week, this would have bothered me a great deal. My interest and background in law enforcement leads me to have a strong sense of justice. So, admittingly there is still a part of me this week that wishes I would have caught the thief in the act, subdued him, and held him till police arrived. This week, however, that part of me was far overshadowed by son and both the joys of his progressive recovery and the anxiety caused by his trials ahead.
We also celebrated Tracy's birthday this weekend. We had a small family party in the cafeteria preceded by Tracy getting plenty of time holding her favorite person. All in all, I think Tracy would say that nothing could overshadow this present (not even the burglary).
I suppose I would be remiss if I didn't talk about the real reason you are all reading this blog, the Dude. I had originally written an unfinished draft of this blog in which I was talking about how great the Dude was doing. Ironically the update, like Jude, would have been premature. Jude is doing OK. Prior to this evening he was doing great. He has had really good blood gases the last few days and has been climbing down on the respirator setting to the point of where he was slowly climbing towards breathing independently (not any time really soon but he was on his way). The doctors had decided that he was ready to start eating so they began feeding him through a feeding tube. This, at first, was not successful but Jude kept at it and his residual results began to improve. What are residuals? When a baby is tube fed, the nurses go back hours after the feeding and through suction, extract any residual fluid or secretion out of the baby stomach that is not being processed. Most premature babies like Jude will have some green, slimy residuals that are usually a result of secretions from the throat and different areas. These secretions are not necessarily a negative and are not alarming. When high levels of undigested milk begin appearing in the residuals, then this is a sign that the baby is not taking to the milk. Jude has been going strong and has low milk residuals, which is good. Jude also had chest x-rays a few days ago and the doctor yesterday morning said that they looked good and that Jude's lungs were developing.
By now, if you are an attentive reader you have picked up on Jude's good condition being reported in the past tense. Jude did not have a good evening. This afternoon, while Tracy was holding him, Jude vomited. This was a short time after feeding and most likely the result of an aspiration. For those of you not medically inclined, an aspiration is commonly referred to as "going down the wrong pipe." This occurrence in itself is not a reason to scrap the evening, that is true. Chest x-rays from earlier in the day that became available showed that Jude's lungs were cloudy. I'm not exactly sure what this means but unless you're a farmer waiting on rain for your crops "cloudy" is never a good thing. Jude's hemoglobin count, which had been climbing and stable, is back down. This is likely from a trach-injury which was discovered early in the evening. Nurses performing a trach-change noticed that there was blood coming from inside his throat after a suction and there was some blood in his stomach which is believed to have been a drain from his throat. His last two blood gases, which I will never understand what the numbers mean, were dumbed down for me as simply "not good." Jude likely has an infection of some kind, although everyone is quick not to tell us an assumption that might be incorrect, and the word pneumonia has been heard by these ears around his bedside. The on-call doctor this evening said that there may be a need for Jude to go back on the larger, oscillating ventilator if his condition is not improving. For now, we can just wait and pray to see what happens with Jude's condition overnight.
Despite all of this happening tonight and the ANTS (Automatic Negative Thoughts) trying to march in my head, I can't help but think about Maurice Hooks (the Lead Evangelist for the Kansas City Church of Christ) and his final point from yesterday's lesson: Romans 8:28. This scripture reads: "And we know that in all things God works for the good of those who love him, who have been called according to his purpose." Maurice concluded the scripture with this point (paraphrased of course [possibly quite poorly]): "If you really believe this scripture then you will trust that everything that has happened in the past and everything that will occur is done for your own good. If you really believe, then you will not doubt God's plans or lose faith in the future ever again." This scripture has been resounding throughout my day!!!! Every time the ANTS go marching on and on into my head I send them packing out the other side by thinking about this scripture and about Maurice's point. Again and again, I have kept going back to it. "You're GPS that was stolen is not covered by your auto insurace...." BAM! Romans 8:28 "Jude vomitted earlier and we're not sure why..." POW! Romans 8:28. And on and on throughout the day where I would normally slip into bleak thoughts and an unnecessary list of possible outcomes God disallowed this from happening through Romans 8:28. Tracy, who I think must recite this scripture subconsciously in her sleep, seems unaffected by the somewhat traumatic afternoon. Her quiet calm, which is not to be confused with distance or numbness, is a result of her freakishly strong faith.
Despite all of today, one cannot deny the amazing working of God's blessings in our lives. We were blessed to get time with Mark and Jodi Hayward last night for a few hours (for those in the KC area who know who that is and how lucky you are when you get time with the Haywards). We were engulfed in love and encouragement as we returned to church yesterday morning. The amount of encouragement and support we received was nothing short of miraculous! Though I would give nothing short of my life to take away any pain Jude has to endure, I cannot help but feel that Tracy, Jude, and I are lucky in all of this. We are lucky enough to be in a situation where God's love and the love of his family is being poured down upon his. We are truly clothed in love from God and His family. Not too many will ever get to feel THIS MUCH love and encouragement. It is an experience that is truly unique. We continue to be grateful for how God has taken care of us and provided us with really all we need. Please continue to pray for the Dude and he will do his part to get back on track. God is good and is working. It's tough to see that while you're in it. Like Jude crying after his heel getting pricked for blood tests, it's tough to understand the pain when your going through it. But just the fact that Maurice was inspired to preach a message that was so quickly applicable shows that God is present.
Saturday, January 7, 2012
Friday, January 6, 2012
The Facts of Life
I would assume that everyone reading the blog is old enough to remember this reference. You take the good, you take the bad, you take em both and then you have....The Facts of Life. A funny reference to life but perhaps a bit more present in our minds this past week. It's kind of funny because when you break it down, a fact is defined as something that actually occurred or actually is the case. So by that definition the facts of life are things in life that have actually occurred or actually are the case in life. I suppose it strikes me as funny because at times I look at my handsome sleeping boy who was so close to being taken away from us, but was not, and my brave wife who seems to be only getting stronger with each hurdle we jump (she's like a kinetic flashlight, the more you crank on her the brighter she glows) and I have to stop and think that all this has really happened. We really are in Kansas City, Tracy really did go into labor at 30 weeks, and Jude really did defy the odds. If you don't stop to think about the facts of life then it really just becomes reference material.
We did meet with the Ear, Nose, and Throat Doctor yesterday who talked to us about the imaging results. It appears that the tumor actually starts in the back of the mouth on the soft-pallet and that the blood vessels going to the tumor start back there as well. This is not exactly good news because there is an increased chance that the tumor is invading upon other areas (although the doctor said it did not appear it was, Amen) and because it is now much more difficult for them to operate on because well, the mouth is the only opening in which they can go through and the area to operate on is further away and being blocked by a tumor. That's not to say that they cannot operate successfully, just that it does make their job more difficult. The second thing he told us was that there is a lot of blood flow to the taratoma. This was not surprising to him but again, it would be more beneficial if things were different since a lot of blood flow means more blood to lose. Think of it as the difference between surgery on your hand and surgery on your chest. There is always going to be more blood flowing through your chest than your hand, therefore a surgery on your chest is always going to be more dangerous than a surgery on your hand because there is more blood flowing. The last nugget of information he gave us was that Jude does in fact have a Cleft Palate. This too was not surprising but rather confirmed by the imaging. For those of you not familiar, a Cleft Palate is when the roof of the mouth does not form properly, in Jude's case this was caused by the taratoma.
There has been a lot of good news given to us about Jude the last few days. Jude is doing great on the smaller ventilator and is improving in his gases daily. His billirubin is going down, which means he's losing his Jaundice. The swelling in his head has also gone down significantly in the last 24 hour so he no longer looks like a "Bobble-Head Jude." Tracy and I were discussing this morning that everything that's up to Jude, that is things his body is regulating such as temperature, oxygen saturation, billirubin levels, etc. he is excelling in. He is fighting hard and actually my exact words earlier were "kicking butt."
We are grateful for how the facts of life have continued to unfold. The timing of Jude's birth in itself presents interesting facts. My Dad, for example, was on his one week off that he will get this entire year until next Christmas (because of his brand new job) and thus was able to come visit. If Jude had been born even a week later my Dad would only be able to come for a short weekend. Tracy's sister, Natalie, was also in town from Alaska for Christmas during the week of Jude's birth. Flights from Alaska don't run cheap or convenient so it certainly made it nice that she was already here, with time off to be able to see his birth. As I have mentioned before, the fact that Jude was born smaller may have been instrumental in Jude's exit procedure going so quickly and smoothly. Even the fact that Jude came well before my spring semester at Boise State begins, which has afforded me freedom to be with he and his mother as much as needed. This has also spared my sanity for the time being.
There are still a lot of obstacles for Jude to overcome. We have been forever grateful for prayers and words of encouragement and we are ever mindful of how lucky our family is. God has funny, sometimes odd ways of working things out and making himself known. Last night I was reading a book about the history of the Hebrews and in it the author discussed how the Roman empire, which had higher education, numerous resources, written language, and influence over a vast territory in the ancient world was the last ruling empire over the Jews before their nation became ultimately divided. The Romans were oppressive and hated by the Jews. It was fascinating, however, to note that it may just have been the vast influence and resources of the Roman empire that helped spread the gospel of Jesus as far as it did over the Middle East and Europe. This made me think of Jude. Not that God necessarily chose for Jude to have health problems or that He necessarily chose for the Romans to rule and oppress the Hebrews, but through it all God was glorified. God is being glorified through Jude in numerous ways. Our faith is being tested daily but the love and encouragement we get from others comes daily as well. People are unified in prayer for Jude. Some have said their prayer life is increasing because of Jude, while others are praying to God for what feels like the first time (for some it is). Like the Jews of the New Testament, this "oppressive force" (the tumor in our case) is not what any of us would have hoped for but increasing love for others and glory and praise to God just might be the end result.
To God be the Glory,
-Chris
We did meet with the Ear, Nose, and Throat Doctor yesterday who talked to us about the imaging results. It appears that the tumor actually starts in the back of the mouth on the soft-pallet and that the blood vessels going to the tumor start back there as well. This is not exactly good news because there is an increased chance that the tumor is invading upon other areas (although the doctor said it did not appear it was, Amen) and because it is now much more difficult for them to operate on because well, the mouth is the only opening in which they can go through and the area to operate on is further away and being blocked by a tumor. That's not to say that they cannot operate successfully, just that it does make their job more difficult. The second thing he told us was that there is a lot of blood flow to the taratoma. This was not surprising to him but again, it would be more beneficial if things were different since a lot of blood flow means more blood to lose. Think of it as the difference between surgery on your hand and surgery on your chest. There is always going to be more blood flowing through your chest than your hand, therefore a surgery on your chest is always going to be more dangerous than a surgery on your hand because there is more blood flowing. The last nugget of information he gave us was that Jude does in fact have a Cleft Palate. This too was not surprising but rather confirmed by the imaging. For those of you not familiar, a Cleft Palate is when the roof of the mouth does not form properly, in Jude's case this was caused by the taratoma.
There has been a lot of good news given to us about Jude the last few days. Jude is doing great on the smaller ventilator and is improving in his gases daily. His billirubin is going down, which means he's losing his Jaundice. The swelling in his head has also gone down significantly in the last 24 hour so he no longer looks like a "Bobble-Head Jude." Tracy and I were discussing this morning that everything that's up to Jude, that is things his body is regulating such as temperature, oxygen saturation, billirubin levels, etc. he is excelling in. He is fighting hard and actually my exact words earlier were "kicking butt."
We are grateful for how the facts of life have continued to unfold. The timing of Jude's birth in itself presents interesting facts. My Dad, for example, was on his one week off that he will get this entire year until next Christmas (because of his brand new job) and thus was able to come visit. If Jude had been born even a week later my Dad would only be able to come for a short weekend. Tracy's sister, Natalie, was also in town from Alaska for Christmas during the week of Jude's birth. Flights from Alaska don't run cheap or convenient so it certainly made it nice that she was already here, with time off to be able to see his birth. As I have mentioned before, the fact that Jude was born smaller may have been instrumental in Jude's exit procedure going so quickly and smoothly. Even the fact that Jude came well before my spring semester at Boise State begins, which has afforded me freedom to be with he and his mother as much as needed. This has also spared my sanity for the time being.
There are still a lot of obstacles for Jude to overcome. We have been forever grateful for prayers and words of encouragement and we are ever mindful of how lucky our family is. God has funny, sometimes odd ways of working things out and making himself known. Last night I was reading a book about the history of the Hebrews and in it the author discussed how the Roman empire, which had higher education, numerous resources, written language, and influence over a vast territory in the ancient world was the last ruling empire over the Jews before their nation became ultimately divided. The Romans were oppressive and hated by the Jews. It was fascinating, however, to note that it may just have been the vast influence and resources of the Roman empire that helped spread the gospel of Jesus as far as it did over the Middle East and Europe. This made me think of Jude. Not that God necessarily chose for Jude to have health problems or that He necessarily chose for the Romans to rule and oppress the Hebrews, but through it all God was glorified. God is being glorified through Jude in numerous ways. Our faith is being tested daily but the love and encouragement we get from others comes daily as well. People are unified in prayer for Jude. Some have said their prayer life is increasing because of Jude, while others are praying to God for what feels like the first time (for some it is). Like the Jews of the New Testament, this "oppressive force" (the tumor in our case) is not what any of us would have hoped for but increasing love for others and glory and praise to God just might be the end result.
To God be the Glory,
-Chris
Wednesday, January 4, 2012
With all the people around Jude think he was a prince or something...
The title of this blog refers to the fact that we recently learned that at the time of Jude's birth there were 37 doctors, nurses, etc. in the actual operating room and another 16 people in the hallway including the Board of Directors and CEO of the hospital.
The last twenty-four hours were epic in the Schinzel family. They started with Jude getting his tracheostmy tube replaced. They custom ordered him a smaller tube, one that would fit better for his small trachea. The procedure was a success and he is now breathing easier and is also able to rest more comfortably. Tracy was able to watch over the procedure and give approval. I, however, opted out of that. Not that I am squeamish when it comes to blood. In fact, when it comes to that it would be quite the opposite. Tracy would prefer a general anesthetic for a blood draw whereas I wouldn't mind doing it myself if they'd let me. No, I couldn't watch because if something were to go wrong I would feel helpless. I think that must be the difference between moms and dads: moms wanna be there no matter what, whereas dads only wanna be there during a conflict if they can help. This is probably why dads are no good to talk to when their teenage daughter has a boy problem. Dad doesn't know what is going on inside his teenage daughter's head and he sure doesn't want to help her figure out how to make any boy like her. At any rate, Tracy was present and the procedure, as I said, went well.
So, with his new trach tube in place it was time for Jude to tackle the smaller ventilator. Now usually when tackle and smaller are together in a sentence it means that the issue or problem is smaller to tackle, but in this case a smaller ventilator is actually a larger, more difficult task for our young man. You see, the smaller the ventilator, the more work he must do. I am pleased to report that he was and is doing great with the smaller ventilator. At first, his C02 levels were up significantly, but after some time and a little more work, he became more stable and is doing better than he was doing on the larger ventilator. Jude seemed to remember the theme of 1 Corinthians 12 and decided that all parts of his body were equally important and must work together. So, he has been persevering and since that time has not looked back.
Later in the day, the doctors decided that he was fit to go to imaging. This was terrific news since we have been waiting since his birth for him to be able to go to imaging. The team assembled after lunch and whisked him, well whisked very quickly at a safe, controlled speed dragging behind him a ventilator and an IV tower for a CT scan. The results of the scan would determine his surgery date for removal of the teratoma. So, we waited for the results, busying ourselves with other activities. Finally, Tracy met with the Neonatlogist who informed her that it was the Ear, Nose, and Throat doctors who would determine the surgery date after evaluating the scans and they....had gone home for the day. Not exactly disappointed but a little less enthused we reluctantly agreed to meet with the ENT's tomorrow as if we had any say in the matter.
By the end of the 24 hours or so Jude had accomplished a few firsts: receiving a new trach tube, staying on his new ventilator, and the last, but certainly not the least, being held by his mommy. We were given possibly the biggest shock since his birth as we walked in the NICU and were told by the nurse that if his blood gases were good at ten o'clock then Tracy could hold him. Now I've seen my wife happy before, in fact, I've seen her ecstatic. She was pleased when I asked her to marry me. She was happy when she told me she was pregnant. She was giddy when she learned they were putting a DSW Shoe store in Boise. But she was beyond giddy like I've never seen when she was told that she could hold her baby boy for the first time. You have to understand that we were not planning on being able to hold him for months. To learn that she could hold him this early was the best early birthday present (her birthday is this Saturday) she could have ever received (on that note, I suppose I can take back the jewelery I bought her for her birthday. Thanks, son). It was riveting to say the least to see my tiny baby boy being held by his mom. To know that she had been through so much to get to this point. She had overcome so much sickness, pain, and emotional trauma to reach this exact moment. I'll let her share about that moment in her own blog but as her husband and his father...a more beautiful moment has never been seen on my twenty-eight years on this earth.
The last twenty-four hours have truly been epic. Not only for Jude but for Tracy and myself. Seeing his progress and his strength has made me very grateful. I've also been able to share his story with others at the Ronald McDonald House and in turn have been able to hear their stories. This has made me grateful for what I do have. There are many at Ronald McDonald and at Children's Mercy who do not have it as good as we do. Some because their child is more sick, faces more obstacles, and has less than a bad chance at surviving. Some because they are all alone in this world with the exception of their spouses and a few others. We are so grateful of how God has worked in Jude's life and our own lives up until this point. You don't have to look very far or very deeply into the past to see how God has answered prayers, blessed our lives, and provided for us when we were in need. Jude's life, health, and our sanity have been a direct result of God's hands working through us and others. Even if we weren't completely surrounded by support from our family in Kansas City and those that have come in from out of town, we would still be surrounded by the love of God's family. This is evident from the texts, emails, facebook comments, and phone calls we receive on a daily basis. Some are from close friends who receive the same pictures and updates my own mother receives and some are those for whom I could ride in an elevator with and not recognize them. It can be easy when you are around such an amazing family, both biological and church, to take for granted what treasures you have. There are those families who have never known love like that expressed in Romans 12 and who have never seen the truth of Matthew 19:26...The Schinzel family is not one of those families.
The last twenty-four hours were epic in the Schinzel family. They started with Jude getting his tracheostmy tube replaced. They custom ordered him a smaller tube, one that would fit better for his small trachea. The procedure was a success and he is now breathing easier and is also able to rest more comfortably. Tracy was able to watch over the procedure and give approval. I, however, opted out of that. Not that I am squeamish when it comes to blood. In fact, when it comes to that it would be quite the opposite. Tracy would prefer a general anesthetic for a blood draw whereas I wouldn't mind doing it myself if they'd let me. No, I couldn't watch because if something were to go wrong I would feel helpless. I think that must be the difference between moms and dads: moms wanna be there no matter what, whereas dads only wanna be there during a conflict if they can help. This is probably why dads are no good to talk to when their teenage daughter has a boy problem. Dad doesn't know what is going on inside his teenage daughter's head and he sure doesn't want to help her figure out how to make any boy like her. At any rate, Tracy was present and the procedure, as I said, went well.
So, with his new trach tube in place it was time for Jude to tackle the smaller ventilator. Now usually when tackle and smaller are together in a sentence it means that the issue or problem is smaller to tackle, but in this case a smaller ventilator is actually a larger, more difficult task for our young man. You see, the smaller the ventilator, the more work he must do. I am pleased to report that he was and is doing great with the smaller ventilator. At first, his C02 levels were up significantly, but after some time and a little more work, he became more stable and is doing better than he was doing on the larger ventilator. Jude seemed to remember the theme of 1 Corinthians 12 and decided that all parts of his body were equally important and must work together. So, he has been persevering and since that time has not looked back.
Later in the day, the doctors decided that he was fit to go to imaging. This was terrific news since we have been waiting since his birth for him to be able to go to imaging. The team assembled after lunch and whisked him, well whisked very quickly at a safe, controlled speed dragging behind him a ventilator and an IV tower for a CT scan. The results of the scan would determine his surgery date for removal of the teratoma. So, we waited for the results, busying ourselves with other activities. Finally, Tracy met with the Neonatlogist who informed her that it was the Ear, Nose, and Throat doctors who would determine the surgery date after evaluating the scans and they....had gone home for the day. Not exactly disappointed but a little less enthused we reluctantly agreed to meet with the ENT's tomorrow as if we had any say in the matter.
By the end of the 24 hours or so Jude had accomplished a few firsts: receiving a new trach tube, staying on his new ventilator, and the last, but certainly not the least, being held by his mommy. We were given possibly the biggest shock since his birth as we walked in the NICU and were told by the nurse that if his blood gases were good at ten o'clock then Tracy could hold him. Now I've seen my wife happy before, in fact, I've seen her ecstatic. She was pleased when I asked her to marry me. She was happy when she told me she was pregnant. She was giddy when she learned they were putting a DSW Shoe store in Boise. But she was beyond giddy like I've never seen when she was told that she could hold her baby boy for the first time. You have to understand that we were not planning on being able to hold him for months. To learn that she could hold him this early was the best early birthday present (her birthday is this Saturday) she could have ever received (on that note, I suppose I can take back the jewelery I bought her for her birthday. Thanks, son). It was riveting to say the least to see my tiny baby boy being held by his mom. To know that she had been through so much to get to this point. She had overcome so much sickness, pain, and emotional trauma to reach this exact moment. I'll let her share about that moment in her own blog but as her husband and his father...a more beautiful moment has never been seen on my twenty-eight years on this earth.
The last twenty-four hours have truly been epic. Not only for Jude but for Tracy and myself. Seeing his progress and his strength has made me very grateful. I've also been able to share his story with others at the Ronald McDonald House and in turn have been able to hear their stories. This has made me grateful for what I do have. There are many at Ronald McDonald and at Children's Mercy who do not have it as good as we do. Some because their child is more sick, faces more obstacles, and has less than a bad chance at surviving. Some because they are all alone in this world with the exception of their spouses and a few others. We are so grateful of how God has worked in Jude's life and our own lives up until this point. You don't have to look very far or very deeply into the past to see how God has answered prayers, blessed our lives, and provided for us when we were in need. Jude's life, health, and our sanity have been a direct result of God's hands working through us and others. Even if we weren't completely surrounded by support from our family in Kansas City and those that have come in from out of town, we would still be surrounded by the love of God's family. This is evident from the texts, emails, facebook comments, and phone calls we receive on a daily basis. Some are from close friends who receive the same pictures and updates my own mother receives and some are those for whom I could ride in an elevator with and not recognize them. It can be easy when you are around such an amazing family, both biological and church, to take for granted what treasures you have. There are those families who have never known love like that expressed in Romans 12 and who have never seen the truth of Matthew 19:26...The Schinzel family is not one of those families.
Subscribe to:
Posts (Atom)