Tuesday, March 31, 2009

wait in silence

"Those who know your name trust in you, for you, oh Lord, do not abandon those who search for you." -Psalm 9:10

This weekend was a little bit of a coasting type of weekend. Jack's blood pressure remains low, and he's fluctuated back and forth with it, but that's about it. Last night, around the time his dialysis circuit was due to be changed, Jack's leg started bleeding, and hasn't really stopped even now, though it is a slow bleed. At first no one was terribly concerned about it, thinking it would slow and stop, and that changing out the bandage constantly would slow the clotting process. Today, however, Jack's saliva was pink, indicating internal bleeding. Dr. Powel believes he does have bleeding inside his body, and is talking about life support should we need it. She also told us that she's sorry. I would accept that if Jack was going to die. But Jack is not going to die, and I reject that. As many people are praying for this baby, Jack is going to show all of us a giant miracle in his tiny body, and all will know that God saved this child. It isn't the doctors who are so willing to give up. God is going to save this baby.

Thank you for your prayers to this point. Angi and I appreciate them more than we can say. Please now pray that Jack's pressure would come back up so that there would be no concern or risk for heart failure. Please pray that Jack's body would resume clotting the way it is supposed to clot, and also that his normal blood functions would continue. Pray that he doesn't get any infections or other organ complications from this long process. And please pray for us, that we would continue to be strong for each other, and that we can be there for Gaige. Thank you and God bless you.

"For God alone, Oh my soul, wait in silence, for my hope is from him." -Psalm 62:5-6

Tony and Angi

Saturday, March 28, 2009

a refuge from the storm

 "For you have been a defense for the helpless, a defense for the needy in his distress, a refuge from the storm, a shade from the heat." -Isaiah 25:4

Sorry for the lack of update yesterday. We were a bit overwhelmed, between going to work and not getting back till late, bringing Gaige up, etc. Yesterday was a pretty rough day, I'll come out and say. Angi and I went to get some food before noon, and Angi felt confident that she could leave and it would be okay. We had a new nurse named Rob Anne, but we also had a pump nurse named Melissa who we've had a time or two before. We let them know we were leaving, and I dropped Angi off at the hospital at around 12:15. I got a very emotional phone call a few minutes later, and it took me a minute to figure out what was going on. Eventually, this is what I discovered.

Last night, when our normal night nurse Elizabeth left this morning, she noticed there was some sediment in his Foley (urine) catheter. The day shift decided to flush the catheter to get rid of the junk, and when she couldn't get it to flush, it slipped out. I don't know if she was panicked (I would have been) or not, but she tried to put it back in, and it wouldn't go in. In fact, he started bleeding profusely from the penis, and continued to do so for a while. Angi sent me a picture of it later, and it's not pretty. I'll spare you. The doctor came in and looked at it, deciding not to try to put the Foley back in. Elizabeth believes that the balloon that keeps the catheter in the bladder must have deflated. Furthermore, she said that she thinks there may have been some tissue buildup around it, which would explain its inability to be replaced, and they are discussing having an urologist step in for a second opinion. We strongly support this idea.

Jack is also still fluctuating in his blood pressure. This morning, the nurse was giving him a bath, and he got a little fussy. His blood pressure was normal before that, but when she put on his cd (which is great- piano and cello arrangements of hymns), and gave him a dose of fentenol (sedative), he went to sleep and his pressure dropped. We've noticed that when Jack rests, he REALLY relaxes, and his blood pressure drops. He is on a lot of medicine to regulate his blood pressure, which they have been able to wean down by half, so praise God! The problem is that while he is going up and down, they can't pull any extra fluid off of him, because it's too taxing on his body. He's maintaining a zero balance, which means they're able to take off all the fluid they're putting in via medicine and blood, but no more.

So! In all of this, we have new things to ask of in prayer. Please pray that Jack would heal and that lifelong function in his... body would be restored and secure. Pray that there are no blood clots or scar tissue in the urethra, and that he will continue to heal. The really nice thing is that Jack didn't seem to be in too much pain through all of this, and even now hasn't really shown too much discomfort. Pray too that his pressure would consistently normalize, and that they will be able to start pulling fluid from him again. And keep praying for Gaige, too. It's hard on him to be away from Angi, and he also doesn't have her discipline while he stays with his grandpa, and he can kind of be... well, a teenager.

Yet through this mostly downer of an update, I hope you don't think we have stopped praising God, because it's through His strength we are able to remain here with Jack. With his support through the Spirit we are able to count on each other, and that's a terrific blessing. I can't imagine what this would be like to someone who didn't have a devout wife like Angi with whom I can endure this. And without the strength of God, I would have given up long ago. And without family and friends praying for us and supporting us, how could we continue? So thank you, too, and God bless.

"Wait patiently on the Lord. Be brave and courageous. Yes, wait patiently on the Lord."

Tony and Angi

Thursday, March 26, 2009

to be certain of what we do not see

"Let us then approach the throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need." -Hebrews 4:16

Today was a different kind of day. I had to be at work today from 1-5, so Angi decided she would take a much-needed break and go home for a bit, pick up Gaige, visit coworkers, etc. Plus our favorite and most dependable nurses were on during the day, so Angi was confident that if anything went bad, they would notify us. So we went and grabbed something to eat (at Qdoba, which is very tasty, in my opinion) and headed home. Pretty soon after we left, however, things with Jack started to get a little worse. His blood pressure started to drop, and his medicines had to be upped several times. At one point (and even still to this point), his medication was at a .5 concentration, which is used for children and babies with no blood pressure at all. Even at that, his blood pressure was still dropping. Being the awesome nurses that they are, they called Angi to let her know, and so Angi started a text chain and with a lot of prayer, his stats started to recover. So thank you for your prayers!

Right now, his stats are fluctuating, and we can still use all the prayer we can get. Pray that the blood pressure can be maintained with a lower dose of medicine successfully. Pray that his lungs will continue to do their job, and that he will breathe past the ventilator as much as he can safely. Pray that they would fully expand. Right now he's letting the vent do all his breathing, and his CO2 levels are rising again because of it. Pray that we would not need to do a second treatment of the tPA. Dr. Barton would like to do another on Monday, and he wants to do a stronger dose this time. We really don't like the idea of that. I feel God blessed us with no side effects with the first one, and of course we believe that God is God of all, and in control. But I'd rather not push our luck. Also, please pray for Gaige, Jack's big brother. He has been home with his grandpa this whole time, and he's starting to feel rather lonely. He's come up and visited during spring break, and a couple other weekends, but that doesn't make going home away from his mom any easier. Tonight he's staying with his Uncle Greg. Please just pray that Gaige would be comforted and that he would have his brother home soon. :)

"Now faith is being sure of what we hope for and certain of what we do not see." -Hebrews 11:1

God bless you all.

Tony and Angi

Wednesday, March 25, 2009

abounding in mercy

The Lord is merciful and gracious; slow to anger, and abounding in mercy. Psalm 103:8

Today at 8 Jack went in for his scheduled catheter and dye test. The doctor ran the catheter from his thigh into his inferior vena cava in his heart to check on the presence of the blood clot. He could only get it so far up, and discovered that the treatment yesterday did not clear the clot from his vessels. This is very discouraging, but God is still on His throne, and can still heal my son.

From there, Dr. Kimberling decided that since they had Jack in the cath lab, they would go ahead and check on the pressures in his heart. I'm really glad they did this, because they discovered that some of the pressures in his right ventricle were much higher than they would like; Dr. Kimberling poked around a little bit more and decided that the pulmonary arteries were a bit too thin, so he put a stint in both the left and right arteries which lead to the lungs. This will certainly relieve some of that pressure, and will possibly allow better flow through his heart altogether. So praise God! This was a blessing in what could have been a very disappointing procedure report.

So now Jack is back in the room with us, and his swelling is still much lower than it had been a couple days ago. He seems to be much more alert now as well. Thank you for all the prayers and consideration that you've shown my family. We appreciate it so much. And send us cool verses that you come across, and we'll put them on our scripture wall!


"The Lord is good, a refuge in times of trouble. He cares for those who trust in Him." Nahum 1:7

Tony and Angi

Tuesday, March 24, 2009

such a fighter

Just a quick little addendum as I promised. They changed up the exact procedure today, and instead of going in with a catheter to the blood clot itself, they decided to pump the medicine into the body systemically, which means that they didn't have to do any kind of cutting or other surgery. Dr. Barton said that this is just as effective as the other route without the trauma to the veins of running a catheter in. So that's good. The drip started at 3:30 today and will end in a few hours at 3:30 a.m. We have seen Jack respond fairly well to the medicine; his blood gas came back very good. Also, some really great news is that he is dropping swelling, not only since the medicine was administered, but since early this morning. He even opened his eyes for the first time in over a week today. That was awesome! We're not done with the medicine yet, so we still have a bit farther to go, but everything looks pretty good so far. The only misstep in it has been that he bled a little bit around the catheter spot on his leg, but it wasn't too bad and has since either stopped or slowed to a point that it's not a worry.

Tomorrow at 8 is when we'll really get to see how effective the medicine is. They will be taking him to the catheter lab and running a catheter, releasing a dye in his chest to see how well the tPA cleared out the veins in and around his heart. From there, with God's grace, we'll see a very high dissolve rate and won't need to do a second dose of the medicine. Please pray for this to be the case! (Granted, most of you won't see this until after we've already gotten the results back, but pray for Jack anyway!) If it turns out that it's just a partial dissolve, the medicine will be administered again on Thursday. Hopefully, however, we'll have a really good result from today's dose.

Praise God! Praise God because our baby is such a fighter! He's been through a lot of tribulation, and he's still kicking. Praise God because the swelling is coming down, and we can see his eyes again. Praise God because He's worth it regardless!

God bless.

Tony and Angi

just believe

"If you can believe, all things are possible to him who believeth." Mark 9:23

Jack is having the procedure today. Just a real quick rundown: they're doing the echo cardiogram right now, and they're going to get him some more blood platelets. He's at 70k and he needs to be at 100k. They're also going to do an ultrasound on his brain to make sure there's no damage before they do the catheter. Once the platelets are in and the ultrasound is done, they will start him on a drip that will go for 6 to 12 hours, depending on how he responds. Once everything is done, I'll post an update and let you know what they think. God bless you for praying for my baby. Keep praying until he comes home, and even then it'd still be nice. :)

Don't be afraid; just believe, and (s)he will be healed." Luke 8:50

Tony and Angi

Monday, March 23, 2009

come quickly to my rescue

"Turn your ear to me; come quickly to my rescue; be my rock of refuge, a strong fortress to save me." Psalm 35:2

I'll come out with the hard stuff first today, and get it over with, so that we can praise God for the good things He is doing. We met today with our PICU floor doctor, Dr. Barton. He is the one who first recognized there was fluid in Jack's abdominal cavity and drained it out. We're pretty fond of this doctor, and he has been forthright with us. Today he was very level with us: he let us know that there's not many more safe steps, and we are about to require more aggressive action, and he thus has an idea for the next step. This step is still just a possibility, and not a definite procedure. Dr. Barton has to confer with our surgeons (Dr. Nokaidoh and Dr. Barth) before he can even be sure we can do it. There is a medicine that is commonly used in heart attack victims called TNP. TNP attacks and destroys blood clots, and it does it quite well, with a nearly 100% success rate. The procedure would entail entering the body with a catheter and shooting TNP directly onto the clot, allowing blood flow to be restored to the heart and the lymphatic ducts to drain. Now the risk and it's a huge one... The risk is that the medicine has a chance to cause hemorrhage in the brain, which would be immediately fatal.

Dr. Barton did let us know that if it were his child in the same situation, he would do it. He also allowed that in the last 15 years, it has happened once that the brain hemorrhaged. So it definitely can happen, but it is rare. He came in today at noon and shared this with us on his rounds, and he said that he'll be back before the day is up (most likely.) So far - at 3:10 p.m. - we haven't seen him yet.

Please pray for us today. Please pray that God would bless us with His wisdom, and that He would bless us with a peace about whichever way we should take this road. We believe that Jack will be healed, and we trust that God's Will will be done in either scenario. Please pray that if it's His will, another option would present itself that would allow Jack to be healed without this decision. They are still treating him today as though this option is not being discussed; they put him back on the nitric gas, and we're hoping that his fluid levels will diminish and perhaps the blood clot will dissolve on its own. Please, please pray for this. It would be absolutely terrific if the means to his healing would show up before we have to take this route.

We do praise God right, though, because Jack has done really well on the ventilator. His breathing and his gas numbers have been better even before he was put on the oscillator, and that's praiseworthy indeed! We praise God because we have now been in the hospital for 7 weeks, and our family and friends have made it possible for us to stay here and not worry about gas money or food money or even bills. God bless you all for that. And we praise God because Jack has such a wonderful extended family in everyone who is in continual prayer for him. Again, God bless you all for that. Praise God from whom all blessings flow! I leave you with two more verses (and Angi's signature as well.):

"Be strong and courageous, do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go." -Joshua 1:9

"Then your light shall break forth, like the morning; your healing shall spring forth speedily, and your righteousness shall go before you. The glory of the Lord shall be your rear guard." -Isaiah 58:8 (Thanks Amanda!)

Tony and Angi

Sunday, March 22, 2009

we owe it all to God

Just a quick update today. Yesterday we pulled Jack off the oscillator, and today he has had consistently good stats. His blood gases have been good, and he has been weaned down on the oxygen percent a good bit. Even his fluid has been draining out of his abdominal cavity. So today is a really good day, and we owe it all to God. We have been pouring over the Word and finding all the different possible verses we can that speak of healing and delivered promises. (If you have any good ones, let us know! We've been writing the ones we find on post-its and sticking them to the walls and doors. Thank you all for your consistent prayer and your dedication to our child. We're sorry that you can't come back and see him now, but I promise that when we bring him home, we'll show him off like crazy.

Today our specific prayers that you can aid us in are that his catheter for his abdomen will continue to drain, and that he will continue to resist infection or sickness. Also pray that his blood pressure would be maintained so that they can continue to aggressively pull the fluid from his blood and wean him further on his medicines.

-Angi, Tony, Gaige, and Jack

Saturday, March 21, 2009

jack is a child of the Most High God

Today, Tony and I had a conference with the doctors. Jack had been on a machine called an oscillator, which is a breathing pump that handles all of his breathing for him via little puffs of oxygen. This means that Jack could be sustained indefinitely on this machine whether he is able to breathe on his own or not. We feel like this is man's way of intervening in God's process. If Jack is to get better and be able to breathe on his own (which we 100% believe is God's will,) than he needs to be off this machine. We asked the doctors to put him back on the ventilator. The doctors were very supportive, and agreed that this was an acceptable step in a good direction. The best part is that the doctors with which we spoke do believe in God, and they vaguely suggested that if he is to get better, it will be because God willed it so. So now we are back on the ventilator, and Jack has accepted it well. He is breathing what the machine supports, plus most of the time he will breathe 2-10 breaths a minute in addition to it.

Jack is going to get better; we believe it, and so should you. Please pray for his continued progress. We are specifically praying that the fluid in his tissue would come out, so that there would be less pressure on the lungs and kidneys. Once the fluid comes out, we also need to pray for that clot in his SVC. The clot is the core of everything that is wrong. We know God can and will destroy that clot, and we need that prayed for as well. (This is Tony typing.. I'm a robot.. I like to type eloquently and Angi is making fun of me for it.) Seriously, please pray for these things specifically. We love Jack and want him to be healed, as we know you do as well. We're intent and focused on bringing him home. We know it's going to happen. We accept and expect it. Thank you for all the support you've given. We appreciate it more than we can say. Do also say a prayer for us as well. We are positive God is bringing him home, but there are a lot of ways in which the enemy is trying to distract us.

Jack is a child of the Most High God. No weapon formed against him will prosper!

Angi and Tony

God is bringing him home

Today, Tony and I had a conference with the doctors. Jack had been on a machine called an oscillator, which is a breathing pump that handles all of his breathing for him via little puffs of oxygen. This means that Jack could be sustained indefinitely on this machine whether he is able to breathe on his own or not. We feel like this is man's way of intervening in God's process. If Jack is to get better and be able to breathe on his own (which we 100% believe is God's will,) than he needs to be off this machine. We asked the doctors to put him back on the ventilator. The doctors were very supportive, and agreed that this was an acceptable step in a good direction. The best part is that the doctors with which we spoke do believe in God, and they vaguely suggested that if he is to get better, it will be because God willed it so. So now we are back on the ventilator, and Jack has accepted it well. He is breathing what the machine supports, plus most of the time he will breathe 2-10 breaths a minute in addition to it.

Jack is going to get better; we believe it, and so should you. Please pray for his continued progress. We are specifically praying that the fluid in his tissue would come out, so that there would be less pressure on the lungs and kidneys. Once the fluid comes out, we also need to pray for that clot in his SVC. The clot is the core of everything that is wrong. We know God can and will destroy that clot, and we need that prayed for as well. Please pray for these things specifically. We love Jack and want him to be healed, as we know you do as well. We're intent and focused on bringing him home. We know it's going to happen. We accept and expect it. Thank you for all the support you've given. We appreciate it more than we can say. Do also say a prayer for us as well. We are positive God is bringing him home, but there are a lot of ways in which the enemy is trying to distract us.

Jack is a child of the Most High God. No weapon formed against him will prosper!

Angi and Tony

Sunday, March 15, 2009

fighting to live

This morning, Jack was put on a different breathing machine called an oscillator. It does all the breathing for him. He was put on it because his CO2 levels were rising higher than the doctors would like. We have been praying for Jack to live, of course, but also for God's will to be done. The doctors give a very disconcerting prognosis; our surgeon came in this morning and told us that some of the cardiologists are still optimistic, however it is very grim. But we trust in God. We trust that if it is in God's will for Jack to come home, that he will come home as healthy as he can, and that God's healing power is limitless. If it is not His will, then I pray that we can accept that with grace. We just don't want Jack to suffer.


Pray for us, please. I know and appreciate that you have been praying; we appreciate it more than we can say. Pray for us that God's will would be done to his glory, whether it be for Jack to make his miraculous recovery we all accept and expect, or if it would be that Jack would be taken home to God's glory. Also, pray for Tony and I that we would be able to weather this storm and come out on the other side. And for Gaige, that he would understand what is going on and not be bitter or angry with God. And especially pray for Jack. Pray that this new oscillator would restore his CO2 to the levels it needs to be (and that he can be put back on the ventilator soon), and that his fluid would continue to drain from the machine he was put on yesterday. Pray that he wouldn't suffer. Thank you for your prayerful support and your friendship. It means a lot.


Tony and Angi

Tuesday, March 3, 2009

our anniversary

It's our first year, I have been staying in Tulsa with Jack. Tony drives back and forth from work and to keep tabs on our older son Gaige. It's not what we had expected.