Hi, everyone. Thank you for your prayers.
The headline for today is: JESSE AND KRISTAN BOTH SLEPT ALL NIGHT! Wow. What a praise! Jesse slept from 11pm-7am, through a diaper change & other stuff the nurse did around 4am. Kristan slept all night and even got in a shower before Jesse woke up.
Jesse had his chest tube removed today - on purpose. Please pray that there continues to be no accumulation of fluid in his chest. The chest x-ray looked good. Yeah!
Jesse had an echocardiogram done. This confirmed that he still has "pulmonary hypertension" - high blood pressure in his lungs.
While they were doing the echo, they turned off his oxygen. Within a minute or two, his oxygen saturation levels dropped to 78% (normal is like 98-100%), so they turned the oxygen back on. Jesse is on the lowest level of oxygen in his nose right now (1/4 L per hour), but he's definitely not ready to come off of it.
Chad and "the boys" are hoping to come visit on Saturday. Please pray that everyone is healthy and that Jesse & Kristan would be protected from any illness.
Also, please pray that Kristan will have wisdom & discernment while she talks with the doctors. Pray she'll know just what questions to ask, that she'll understand the doctor-lingo, and that she'll be able to direct Jesse's medical care for his best. It can sure be intimidating talking to the doctors, so just pray for her.
Thank you all so much for checking the blog. Kristan, Chad and all of us covet your prayers & comments here on the blog. It looks like Jesse will be in the hospital for at least another 10 days, and maybe even 2 weeks or longer, so please remember them often.
Truly,
Aunt Kim
Thursday, January 31, 2008
Wednesday, January 30, 2008
Wednesday, Januray 30th
Jesse is slowly adapting to his new "diet" of TPN. They are now allowing me to give him 325ml (about 11 ounces) of Pedialyte per day. This helps a little, but he still seems hungry. He is awake most of the time and usually happy. I was trying to rest today and I think I took 3 or 4 short naps of about 15 minutes, but each time I fell asleep he would wake up. It was nice to get a little extra sleep and I feel much better today. The pain is pretty much gone from my neck and shoulder now. Praise God!!!
I held Jesse for a while this afternoon, and the nurses brought in a swing that he was in for a couple hours. The chest x-ray showed a small amount of fluid below the lung, but not much and they aren't concerned about it. I think there will be one more x-ray tomorrow and if it looks good they will take out the chest tube tomorrow. He will then continue on the TPN and Octreotide for a total of 10 days. Then he will continue on the Octreotide and Portagen formula for a couple days to see how he does. So we will be in the hospital for a while still...
The "hormone" doctor came in today to say that Jesse's thyroid hormone is back to normal now (he had to have some thyroid hormone earlier in his stay). They will recheck it in 6 weeks to make sure it is still normal.
Jesse had another "bath" today, and some new clothes. Nurses have called him the "best dressed" baby and everyone comments on how cute he is!!!
Thanks Kim for the wonderful video. That was a great surprise. It brought both smiles and tears.
Love,
Kristan
I held Jesse for a while this afternoon, and the nurses brought in a swing that he was in for a couple hours. The chest x-ray showed a small amount of fluid below the lung, but not much and they aren't concerned about it. I think there will be one more x-ray tomorrow and if it looks good they will take out the chest tube tomorrow. He will then continue on the TPN and Octreotide for a total of 10 days. Then he will continue on the Octreotide and Portagen formula for a couple days to see how he does. So we will be in the hospital for a while still...
The "hormone" doctor came in today to say that Jesse's thyroid hormone is back to normal now (he had to have some thyroid hormone earlier in his stay). They will recheck it in 6 weeks to make sure it is still normal.
Jesse had another "bath" today, and some new clothes. Nurses have called him the "best dressed" baby and everyone comments on how cute he is!!!
Thanks Kim for the wonderful video. That was a great surprise. It brought both smiles and tears.
Love,
Kristan
Tuesday, January 29, 2008
Tuesday January 29th - 2:40 CST
Just a quick update for you blog-junkies :)
Jesse successfully had the PICC line inserted and is stable. Praise God once again!
We don't know what the future holds, but we know Who holds the future. He is the Great "I am."
Please continue to pray for Jesse. Pray for the chylothorax to heal miraculously quickly and for God to be glorified in Jesse's life. The doctors are at this point expecting him to be on TPN for at least 7-10 days, so Jesse will be in the hospital at least that long.
Pray also for Kristan who is growing weary. Please lift her up and pray for her encouragement, for the joy of the Lord to be her strength.
Truly,
Aunt Kim
Jesse successfully had the PICC line inserted and is stable. Praise God once again!
We don't know what the future holds, but we know Who holds the future. He is the Great "I am."
Please continue to pray for Jesse. Pray for the chylothorax to heal miraculously quickly and for God to be glorified in Jesse's life. The doctors are at this point expecting him to be on TPN for at least 7-10 days, so Jesse will be in the hospital at least that long.
Pray also for Kristan who is growing weary. Please lift her up and pray for her encouragement, for the joy of the Lord to be her strength.
Truly,
Aunt Kim
Monday, January 28, 2008
Monday, January 28th
As Kim stated, things today didn't go as we had hoped. But God knew ahead how the day would go, and he sent people to be here for me. I knew Amee had been planning to come today, so I called her this morning to tell her they would be putting in a chest tube. I thought she was still at home, but she said she was only 20 minutes away. I'm so glad that God sent her to be here for me at just the right time. She also shared with me that on Friday the 11th at 7:45am she told her husband she felt the need to be with me. About 20 minutes later she received the prayer chain call that Jesse had gone into cardiac arrest at 7:45am. Isn't God amazing? I hope I can be as good at listening and obeying God as Amee has been.
Steve and Wanda were also here during the procedure, and then came back to bring a delicious dinner. I also had surprise visits from Julie, Judy and Cindy and was given a wonderful shoulder/neck/foot massage. Thanks!!!
Jesse has been quite tired throughout the day and somewhat irratible - maybe in pain? The chest tube was inserted successfully and has drained over 35cc of fluid. His oxygen saturation levels immediately rose after draining the fluid off and I was so surprised to actually see 100% on the screen. They have since reduced his oxygen to 1/4 liter per hour and that is as low as they will go and he continues to have saturations in the upper 90's.
Jesse will be going in tomorrow at 10:00am to have a PICC line inserted. (A peripherally inserted central catheter- (PICC or PIC line) is a form of intravenous access that can be used for a prolonged period of time, e.g. for long chemotherapy regimens, extended antibiotic therapy or total parenteral nutrition. )
Please pray for Jesse's health and strength, and endurance and rest for me.
Love,
Kristan
Steve and Wanda were also here during the procedure, and then came back to bring a delicious dinner. I also had surprise visits from Julie, Judy and Cindy and was given a wonderful shoulder/neck/foot massage. Thanks!!!
Jesse has been quite tired throughout the day and somewhat irratible - maybe in pain? The chest tube was inserted successfully and has drained over 35cc of fluid. His oxygen saturation levels immediately rose after draining the fluid off and I was so surprised to actually see 100% on the screen. They have since reduced his oxygen to 1/4 liter per hour and that is as low as they will go and he continues to have saturations in the upper 90's.
Jesse will be going in tomorrow at 10:00am to have a PICC line inserted. (A peripherally inserted central catheter- (PICC or PIC line) is a form of intravenous access that can be used for a prolonged period of time, e.g. for long chemotherapy regimens, extended antibiotic therapy or total parenteral nutrition. )
Please pray for Jesse's health and strength, and endurance and rest for me.
Love,
Kristan
Chylothorax continues
So, the reason why fluid is accumulating in Jesse's chest (pleural space around his lungs) is because of the continuing chylothorax. This has not resolved on its own, despite trying octreotide (a hormone) and a special formula (Portagen). The next step is for Jesse to be placed on TPN (Total Parenteral Nutrition) - meaning he will be off bottles all together and totally fed intraveneously. This will last for the minimum of a week and maybe a month or more.
Below I've pasted a very good article about chylothorax that I found on the internet at http://tchin.org/resource_room/c_art_15e.htm I hope it's helpful to all of us in understanding what's going on.
Kristan is going to try to get on tonight to update everyone more.
By the way, Jesse's oxygen has been turned down again & he is breathing well.
Thank you everyone for your continued prayers.
Aunt Kim
****
Chylothorax is the accumulation of chyle in the pleural (lung) space. Chyle is usually a milky fluid comprised of lymph drainage, which carries fat, protein and white blood cells (lymphocytes). It occurs after injury to or obstruction of the thoracic duct. Injury to the thoracic duct during cardiovascular surgery occurs because of its proximity to the great vessels (aorta and pulmonary artery) in the chest, where the duct crosses from right to left. Most cases of chylothorax after surgery for congenital heart disease have occurred after non-open heart procedures, mainly subclavian-pulmonary artery shunt procedures, resection of coarctation of the aorta, and ligation of patent ductus arteriosus.
Symptoms of chylothorax are related to the amount of fluid present and the rate at which it accumulates and may include fatigue, shortness of breath at rest or on exertion, heaviness, and discomfort on the affected side. An initial trial of conservative therapy is indicated, since spontaneous closure can occur. Removing chyle from the pleural space is best accomplished by chest tube placement for continuing draining. This allows full re-expansion of the lung, which closes the lymph connection (fistula) by the lung’s compression effects. In order to maintain adequate nutrition while reducing lymph flow, it is recommended that the diet be changed to limit the fat source to medium-chain triglycerides (fats that are directly absorbed from the gut into the blood stream without having to go through the lymph system). Alternatively, the patient may need to take nothing by mouth and receive total parenteral nutrition (TPN) by receiving all nutrition through an IV or central line for many weeks. Since flow of chyle is minimized only when the gastrointestinal tract is completely at rest, others prefer to stop oral feedings altogether. The drainage of chyle usually slows or stops within 7 days after tube drainage and with changing of the diet to reduce lymph flow. If this does not occur, more aggressive action such as surgery may be recommended.
Below I've pasted a very good article about chylothorax that I found on the internet at http://tchin.org/resource_room/c_art_15e.htm I hope it's helpful to all of us in understanding what's going on.
Kristan is going to try to get on tonight to update everyone more.
By the way, Jesse's oxygen has been turned down again & he is breathing well.
Thank you everyone for your continued prayers.
Aunt Kim
****
Chylothorax is the accumulation of chyle in the pleural (lung) space. Chyle is usually a milky fluid comprised of lymph drainage, which carries fat, protein and white blood cells (lymphocytes). It occurs after injury to or obstruction of the thoracic duct. Injury to the thoracic duct during cardiovascular surgery occurs because of its proximity to the great vessels (aorta and pulmonary artery) in the chest, where the duct crosses from right to left. Most cases of chylothorax after surgery for congenital heart disease have occurred after non-open heart procedures, mainly subclavian-pulmonary artery shunt procedures, resection of coarctation of the aorta, and ligation of patent ductus arteriosus.
Symptoms of chylothorax are related to the amount of fluid present and the rate at which it accumulates and may include fatigue, shortness of breath at rest or on exertion, heaviness, and discomfort on the affected side. An initial trial of conservative therapy is indicated, since spontaneous closure can occur. Removing chyle from the pleural space is best accomplished by chest tube placement for continuing draining. This allows full re-expansion of the lung, which closes the lymph connection (fistula) by the lung’s compression effects. In order to maintain adequate nutrition while reducing lymph flow, it is recommended that the diet be changed to limit the fat source to medium-chain triglycerides (fats that are directly absorbed from the gut into the blood stream without having to go through the lymph system). Alternatively, the patient may need to take nothing by mouth and receive total parenteral nutrition (TPN) by receiving all nutrition through an IV or central line for many weeks. Since flow of chyle is minimized only when the gastrointestinal tract is completely at rest, others prefer to stop oral feedings altogether. The drainage of chyle usually slows or stops within 7 days after tube drainage and with changing of the diet to reduce lymph flow. If this does not occur, more aggressive action such as surgery may be recommended.
Monday, January 28 4pm CST updates
Updated 4pm CST:
Jesse's chest x-ray did show some increase in fluid and the doctors were in concensus that Jesse needed a chest tube put in. Our understanding is that the tube is draining fluid in the lining around Jesse's lungs - the pleural lining or something - and that this would not go away on its own. Also, the doctors needed to test the fluid to see is it still is chylos or not.
So, around noon Jesse had a chest tube put in. He is doing well.
Thank you for all your prayers. Keep them coming!
**********************
10am
Jesse’s x-ray yesterday morning came back showing minimal increase in chest fluid – praise God – and he continues to breathe well (with supplemental oxygen through his nose). They ran another chest x-ray this morning that we haven’t gotten the results back for.
Believe it or not, but if the chest x-ray shows no increase in fluid, the doctors are considering sending Jesse home TOMORROW! Can you imagine? He is eating well from a bottle & breathing ok – he’d be sent home with supplemental oxygen.
So, please pray that there is no increase in fluid in his chest.
Also, Jesse's dad (Chad) and two oldest brothers (Matthew & Collin) have a cold. Pray that God will protect Jesse from getting it as they were all with Jesse over the weekend. Also, pray for clear direction in this regard as to Jesse going home.
God is so good. To Him be the glory forever & ever.
Love,
Aunt Kim
Jesse's chest x-ray did show some increase in fluid and the doctors were in concensus that Jesse needed a chest tube put in. Our understanding is that the tube is draining fluid in the lining around Jesse's lungs - the pleural lining or something - and that this would not go away on its own. Also, the doctors needed to test the fluid to see is it still is chylos or not.
So, around noon Jesse had a chest tube put in. He is doing well.
Thank you for all your prayers. Keep them coming!
**********************
10am
Jesse’s x-ray yesterday morning came back showing minimal increase in chest fluid – praise God – and he continues to breathe well (with supplemental oxygen through his nose). They ran another chest x-ray this morning that we haven’t gotten the results back for.
Believe it or not, but if the chest x-ray shows no increase in fluid, the doctors are considering sending Jesse home TOMORROW! Can you imagine? He is eating well from a bottle & breathing ok – he’d be sent home with supplemental oxygen.
So, please pray that there is no increase in fluid in his chest.
Also, Jesse's dad (Chad) and two oldest brothers (Matthew & Collin) have a cold. Pray that God will protect Jesse from getting it as they were all with Jesse over the weekend. Also, pray for clear direction in this regard as to Jesse going home.
God is so good. To Him be the glory forever & ever.
Love,
Aunt Kim
Sunday, January 27, 2008
Sunday - Updated 9pm CST
I'm sorry we haven't gotten this on here sooner ...
Firstly, the chest x-ray came back this morning that there was little increase in fluid accumulation in Jesse's chest. He continues to breathe well on his own - praise GOD! So, he did not have a chest tube put in.
Jesse will go through the same regimen tonight - no formula after 3 or 4 a.m. in preparation for if he does need a general anesthesia to put in a chest tube tomorrow.
So, we need to continue praying tonight & tomorrow morning for the same things as yesterday -- no fluid accumulation, no crankiness from lack of food, good breathing during the night. Also, pray that for the chest x-ray that will be done in the morning & for if Jesse needs a chest tube tomorrow. If he does need a chest tube, pray especially for protection during anesthesia.
Thank you all for your prayers!
Aunt Kim (posted at 9pm CST)
**************
I talked to Kristan about an hour ago & they hadn't done the chest x-ray yet.
Jesse is still breathing fine - praise GOD!
He was allowed clear fluids until 7am, so Kristan gave him clear Pedialyte at 6:30 am. He drank 4 oz of it, which is amazing in that most babies refuse it because it tastes so bad.
So, keep praying.
Aunt Kim (posted at 10am CST)
Firstly, the chest x-ray came back this morning that there was little increase in fluid accumulation in Jesse's chest. He continues to breathe well on his own - praise GOD! So, he did not have a chest tube put in.
Jesse will go through the same regimen tonight - no formula after 3 or 4 a.m. in preparation for if he does need a general anesthesia to put in a chest tube tomorrow.
So, we need to continue praying tonight & tomorrow morning for the same things as yesterday -- no fluid accumulation, no crankiness from lack of food, good breathing during the night. Also, pray that for the chest x-ray that will be done in the morning & for if Jesse needs a chest tube tomorrow. If he does need a chest tube, pray especially for protection during anesthesia.
Thank you all for your prayers!
Aunt Kim (posted at 9pm CST)
**************
I talked to Kristan about an hour ago & they hadn't done the chest x-ray yet.
Jesse is still breathing fine - praise GOD!
He was allowed clear fluids until 7am, so Kristan gave him clear Pedialyte at 6:30 am. He drank 4 oz of it, which is amazing in that most babies refuse it because it tastes so bad.
So, keep praying.
Aunt Kim (posted at 10am CST)
Saturday, January 26, 2008
Immediate prayer needed for Jesse
We need immediate prayer for baby Jesse.
His chest tube accidentally came out today. The doctors were hoping to remove it tomorrow if his chest drainage had stopped. He was taken off the hormone Octreotide earlier today (which dries up the chest drainage) and they wanted to watch to see if the drainage had stopped on its own.
Now they aren’t able to watch the drainage, so we need to PRAY, PRAY, PRAY that there is no fluid accumulation in Jesse’s chest cavity, particularly to any immediately dangerous level that would require an emergency operation to drain. Fluid buildup in Jesse’s chest could press on his lungs making it difficult for him to breathe & would require immediate attention.
Jesse is scheduled to have a chest x-ray around 7-8 am (Mountain Time – which is like 8-9 am Central Time) tomorrow (Sunday, January 27th). Please pray that the x-ray will clearly reveal whether there is fluid accumulating or not and for the doctors to have great wisdom in what course of treatment to take.
Jesse is not allowed to eat past 3am in case he will need surgery in the morning, so pray that God will keep his tummy full and that he will not be cranky from not being able to eat.
If Jesse does need to have a chest tube re-inserted, it will require a general anesthesia. Jesse’s body does not react well to anesthesia and we really need to pray that God will protect him from pain and keep his heart and lungs functioning steadily during the anesthesia.
If Jesse needs a new chest tube, they are planning to do it around 9-10am. Pray that it would be then & not later in the day, so that Jesse doesn’t have to go without eating for any longer than necessary.
Last Sunday, our churches were praying for little Jesse as he was taking off the ECMO machine and I pray that this Sunday our churches will be praying for little Jesse again.
God has worked many, many miracles in Jesse’s life already. Earlier today Jesse was taken off the high-flow oxygen & is now on a regular flow one & is doing well. Praise GOD!
To God be the glory, Great things HE has done! We pray that He will be glorified in yet another miraculous recovery for Jesse,
Aunt Kim
His chest tube accidentally came out today. The doctors were hoping to remove it tomorrow if his chest drainage had stopped. He was taken off the hormone Octreotide earlier today (which dries up the chest drainage) and they wanted to watch to see if the drainage had stopped on its own.
Now they aren’t able to watch the drainage, so we need to PRAY, PRAY, PRAY that there is no fluid accumulation in Jesse’s chest cavity, particularly to any immediately dangerous level that would require an emergency operation to drain. Fluid buildup in Jesse’s chest could press on his lungs making it difficult for him to breathe & would require immediate attention.
Jesse is scheduled to have a chest x-ray around 7-8 am (Mountain Time – which is like 8-9 am Central Time) tomorrow (Sunday, January 27th). Please pray that the x-ray will clearly reveal whether there is fluid accumulating or not and for the doctors to have great wisdom in what course of treatment to take.
Jesse is not allowed to eat past 3am in case he will need surgery in the morning, so pray that God will keep his tummy full and that he will not be cranky from not being able to eat.
If Jesse does need to have a chest tube re-inserted, it will require a general anesthesia. Jesse’s body does not react well to anesthesia and we really need to pray that God will protect him from pain and keep his heart and lungs functioning steadily during the anesthesia.
If Jesse needs a new chest tube, they are planning to do it around 9-10am. Pray that it would be then & not later in the day, so that Jesse doesn’t have to go without eating for any longer than necessary.
Last Sunday, our churches were praying for little Jesse as he was taking off the ECMO machine and I pray that this Sunday our churches will be praying for little Jesse again.
God has worked many, many miracles in Jesse’s life already. Earlier today Jesse was taken off the high-flow oxygen & is now on a regular flow one & is doing well. Praise GOD!
To God be the glory, Great things HE has done! We pray that He will be glorified in yet another miraculous recovery for Jesse,
Aunt Kim
Friday, January 25, 2008
Friday, January 25th
Days up on the 9th floor are rather uneventful. Jesse got half of his staples taken out yesterday, and the other half will come out Sunday. He is continuing on his Octreotide medication until tomorrow at which time they will stop it and hope the chest drainage doesn't resume. If there it no drainage, they will be able to remove the chest tube hopefully Monday. If the drainage resumes once they discontinue the medication we will have to look at more long term solutions, so pray that the drainage stops.
They continue to wean Jesse off the oxygen. He is down to 1 1/2 liters at 35% oxygen.
Chad came Thursday evening and spent the night. He and I had a nice afternoon having lunch together and doing a little shopping. Grandma Mari is planning to bring the boys for a visit tomorrow. It will be so nice to see them again, and it will be Sam's first time to see Jesse since the surgery!
Not much happens (except if I ever leave the room). We just eat, sleep and try to entertain Jesse. Jesse remains very content to lay in bed all day. I did get to hold him for a couple hours this morning. I have to keep an eye on him or he quickly tries to pull out his lines or oxygen, so in general his hands are tied down. It will be so nice when he isn't hooked up to everything and I can really hold and snuggle him. We have met many other people while here in the hospital that have been very encouraging and helpful to us. Please pray for Jonathan, a 3 1/2 year old who has undergone 4 heart surgeries and continues to have problems. Also pray for AnnaSophia who underwent surgery around when Jesse did. You can view her website at http://www.ourannasophia.blogspot.com/.
The lack of sleep and the waiting is tiring, but I am doing better now at trusting and waiting on God. He has the master schedule and I am glad he is in control.
I wait for the LORD, my soul waits, and in his word I hope. (Psalm 130:5)
Give thanks to the LORD, for he is good, for his steadfast love endures forever. (Psalm 136:1)
I thank my God in all my remembrance of you, always in every prayer of mine for you all making my prayer with joy, because of your partnership in the gospel from the first day until now. And I am sure of this, that he who began a good work in you will bring it to completion at the day of Jesus Christ. (Philippians 1:3-6)
God bless all of you around the country who have lifted us up in prayer.
Love,
Kristan
They continue to wean Jesse off the oxygen. He is down to 1 1/2 liters at 35% oxygen.
Chad came Thursday evening and spent the night. He and I had a nice afternoon having lunch together and doing a little shopping. Grandma Mari is planning to bring the boys for a visit tomorrow. It will be so nice to see them again, and it will be Sam's first time to see Jesse since the surgery!
Not much happens (except if I ever leave the room). We just eat, sleep and try to entertain Jesse. Jesse remains very content to lay in bed all day. I did get to hold him for a couple hours this morning. I have to keep an eye on him or he quickly tries to pull out his lines or oxygen, so in general his hands are tied down. It will be so nice when he isn't hooked up to everything and I can really hold and snuggle him. We have met many other people while here in the hospital that have been very encouraging and helpful to us. Please pray for Jonathan, a 3 1/2 year old who has undergone 4 heart surgeries and continues to have problems. Also pray for AnnaSophia who underwent surgery around when Jesse did. You can view her website at http://www.ourannasophia.blogspot.com/.
The lack of sleep and the waiting is tiring, but I am doing better now at trusting and waiting on God. He has the master schedule and I am glad he is in control.
I wait for the LORD, my soul waits, and in his word I hope. (Psalm 130:5)
Give thanks to the LORD, for he is good, for his steadfast love endures forever. (Psalm 136:1)
I thank my God in all my remembrance of you, always in every prayer of mine for you all making my prayer with joy, because of your partnership in the gospel from the first day until now. And I am sure of this, that he who began a good work in you will bring it to completion at the day of Jesus Christ. (Philippians 1:3-6)
God bless all of you around the country who have lifted us up in prayer.
Love,
Kristan
Wednesday, January 23, 2008
Wednesday, January 23rd
Nothing happened today - meaning no tubes were taken out. The chest x-ray showed some fluid build up in Jesse's chest cavity, so they had to leave the tube in. They put him back on Lasix by IV to help get rid of fluid (he had been getting it orally). He has since had a VERY wet diaper, and more drainage from the chest tube. They have weaned his oxygen a little. Tomorrow he will hopefully get 1/2 of the staples removed from the incision. He continues to drink his bottles well and smile at Mom. I don't think he has even had any Tylenol today.
Pray for Sam who is now not feeling well. Holly said she has been holding him a lot today. The boys were going to come to visit tomorrow, but that might not happen since we don't want to get Jesse sick.
Little AnnaSophia who had surgery around when Jesse did, got to go home today. We enjoyed the fellowship with her family and will continue to pray for them, and AnnaSophia's little heart that may require more surgery in the future.
Things have slowed down a lot up here, but it is hard to get away since there isn't someone watching Jesse all the time now.
Thanks for all the calls and support.
Love,
Kristan
Pray for Sam who is now not feeling well. Holly said she has been holding him a lot today. The boys were going to come to visit tomorrow, but that might not happen since we don't want to get Jesse sick.
Little AnnaSophia who had surgery around when Jesse did, got to go home today. We enjoyed the fellowship with her family and will continue to pray for them, and AnnaSophia's little heart that may require more surgery in the future.
Things have slowed down a lot up here, but it is hard to get away since there isn't someone watching Jesse all the time now.
Thanks for all the calls and support.
Love,
Kristan
Tuesday, January 22, 2008
Isn't my Daddy funny?
I just had to post this darling video I took of Jesse giggling while Chad is squeezing his chubby little cheeks. This was taken about a week before Jesse's surgery.
Tuesday, January 22 - THE BIG MOVE!!!
The big news of the day is that this afternoon Jesse moved out of the Cardiac Intensive Care Unit, up to the CPCU (Cardiac Pediatric Care Unit???) on the 9th floor. This is one more step toward coming home, but I have no idea how far off that day is. He still has a chest tube in draining fluid, and a Central Venous Line, but hopefully both of those will be taken out tomorrow. He is off the nitric oxide, but still on high-flow oxygen that has to be weaned down a lot before he can come home. They did come do an ECHO of his heart, but of course I was at lunch so I will have to ask the doctors tomorrow morning what the ECHO showed.
I praise God for all he has done in our lives. Sometimes I do not understand why Jesse must go through all that he has, but I continue look to God for direction in making decisions, and to hope and trust in God.
Love,
Kristan
Psalm 43
Send Out Your Light and Your Truth
Send Out Your Light and Your Truth
Vindicate me, O God, and defend
my cause against an ungodly people,
from the deceitful and unjust man deliver me!
For you are the God in whom I take refuge;
why have you rejected me?
Why do I go about mourning
because of the oppression of the enemy?
Send out your light and your truth;
Send out your light and your truth;
let them lead me;let them bring me to your holy hill
and to your dwelling!
Then I will go to the altar of God,
to God my exceeding joy,
and I will praise you with the lyre,
O God, my God.
Why are you cast down, O my soul,
Why are you cast down, O my soul,
and why are you in turmoil within me?
Hope in God; for I shall again praise him,
my salvation and my God.
Monday, January 21, 2008
Monday, January 21 updates
Jesse has been fever-free all day!
The test results came back that he doesn't have RSV, but we're not sure what, if any, infection is there. He still has chest congestion - coughing up some stuff from his lungs. Please continue to pray for healing & protection from any type of infection.
The doctors are slowly weaning Jesse off the nitric oxide, which reduces the pressure in his lungs. He's still getting 40% oxygen through a high-flow nasal canula.
He's eating really well - 4-5 ounces per bottle every 3-4 hours. What a praise since we hear this special formula tastes really nasty. Continue to pray for wisdom for Kristan & Chad & the doctors as far as continuing the Portagen formula (which is working - praise God - the nasty chest drainage has stopped!) vs. switching to defatted breastmilk.
Kristan, and Jesse, got a good night sleep last night. Kristan had a private "sleep room" in the hospital. Her neck is still sore, but she feels better after her first full night's sleep in 2 weeks. Grin.
The doctor is considering removing Jesse's chest tube. Please pray that they will have wisdom & discernment as to whether this is the right course to take. They are always trying to balance the risks of leaving things in vs. the risks of taking them out.
Jesse has extremely fragile skin. Pray for supernatural skin strength to resist tearing from all the tape and other stuff attached to him.
Thank you for your continued prayers. Jesse is a living testimony to the amazing power of God.
Love,
Aunt Kim
The test results came back that he doesn't have RSV, but we're not sure what, if any, infection is there. He still has chest congestion - coughing up some stuff from his lungs. Please continue to pray for healing & protection from any type of infection.
The doctors are slowly weaning Jesse off the nitric oxide, which reduces the pressure in his lungs. He's still getting 40% oxygen through a high-flow nasal canula.
He's eating really well - 4-5 ounces per bottle every 3-4 hours. What a praise since we hear this special formula tastes really nasty. Continue to pray for wisdom for Kristan & Chad & the doctors as far as continuing the Portagen formula (which is working - praise God - the nasty chest drainage has stopped!) vs. switching to defatted breastmilk.
Kristan, and Jesse, got a good night sleep last night. Kristan had a private "sleep room" in the hospital. Her neck is still sore, but she feels better after her first full night's sleep in 2 weeks. Grin.
The doctor is considering removing Jesse's chest tube. Please pray that they will have wisdom & discernment as to whether this is the right course to take. They are always trying to balance the risks of leaving things in vs. the risks of taking them out.
Jesse has extremely fragile skin. Pray for supernatural skin strength to resist tearing from all the tape and other stuff attached to him.
Thank you for your continued prayers. Jesse is a living testimony to the amazing power of God.
Love,
Aunt Kim
Sunday, January 20, 2008
Updates: January 20th
Jesse has developed some type of infection and is running a fever. He's already on Tylenol, so it's hard to know exactly what his fever would be, but it's been between 99-101. The doctors have him on an antibiotic while they run tests to figure out what type of infection it is. Please pray for the infection to go away quickly, for the doctors to be able to diagnose & treat it accurately, and pray that God will protect Jesse's frail little body.
The chest tube is draining again with the chylothorax stuff. We'd hoped that putting Jesse on a special formula would take care of it. Apparently, that is not the case. They are now also giving him some special hormone that is supposed to help. Kristan is going tomorrow to meet with someone about possibly treating her breastmilk to make it compatible for Jesse to drink. Pray God heals Jesse of the chylothorax problem and gives Kristan & Chad & the doctors unity & wisdom in how to treat this.
Jesse's pulse oxygen rates are lower than they'd like, in the low 90s. Pray for God to miraculously heal Jesse's lungs that his oxygen levels would rise.
Overall, considering what Jesse has been through in the past 10 days, he's a walking miracle! But, he still has a very long road ahead of him. Please continue to pray for his healing and for God's glory to be apparent in his life.
One more thing, Kristan is in need of sleep and peace in the midst of watching Jesse struggle. She really appreciates all your prayers & love. God is able.
Love, Aunt Kim
p.s. I'm putting the link to Kristan's testimony in the "link" section on the bottom left side of the blog. Let us know if you're able to hear it.
The chest tube is draining again with the chylothorax stuff. We'd hoped that putting Jesse on a special formula would take care of it. Apparently, that is not the case. They are now also giving him some special hormone that is supposed to help. Kristan is going tomorrow to meet with someone about possibly treating her breastmilk to make it compatible for Jesse to drink. Pray God heals Jesse of the chylothorax problem and gives Kristan & Chad & the doctors unity & wisdom in how to treat this.
Jesse's pulse oxygen rates are lower than they'd like, in the low 90s. Pray for God to miraculously heal Jesse's lungs that his oxygen levels would rise.
Overall, considering what Jesse has been through in the past 10 days, he's a walking miracle! But, he still has a very long road ahead of him. Please continue to pray for his healing and for God's glory to be apparent in his life.
One more thing, Kristan is in need of sleep and peace in the midst of watching Jesse struggle. She really appreciates all your prayers & love. God is able.
Love, Aunt Kim
p.s. I'm putting the link to Kristan's testimony in the "link" section on the bottom left side of the blog. Let us know if you're able to hear it.
Saturday, January 19, 2008
Saturday, January 19 - Bottle Feeding Again
After taking the breathing tube out I have been able to resume bottle feeding (with Portagen formula). Jesse is much happier since his tummy if once again full. He went yesterday from 6am-midnight with nothing to eat, and got pretty mad last night before they allowed a bottle. He slept well last night, but I didn't. My neck/shoulder has hurt since Thursday morning and I can barely turn my head. It seems a slight bit better today.Thanks to everyone for all of your support and help here and at the farm!
Love,
Kristan
Friday, January 18, 2008
Friday, January 18 - Breathing Tube Is Out!!!
They are preparing to take Jesse off the respirator - 1 week after his cardiac arrest. Pray that all goes well.
Peace I leave with you; my peace I give to you. Not as the world gives do I give to you. Let not your hearts be troubled, neither let them be afraid. (John 14:27)
Fear not, for I am with you; be not dismayed, for I am your God;I will strengthen you, I will help you, I will uphold you with my righteous right hand. (Isaiah 41:10)
5:15pm - The breathing tube is out!!! Jesse is getting oxygen and nitric oxide through a nasal cannula, but breathing on his own once again. Praise God that all went smoothly.
Love,
Kristan
Peace I leave with you; my peace I give to you. Not as the world gives do I give to you. Let not your hearts be troubled, neither let them be afraid. (John 14:27)
Fear not, for I am with you; be not dismayed, for I am your God;I will strengthen you, I will help you, I will uphold you with my righteous right hand. (Isaiah 41:10)
5:15pm - The breathing tube is out!!! Jesse is getting oxygen and nitric oxide through a nasal cannula, but breathing on his own once again. Praise God that all went smoothly.
Love,
Kristan
Thursday, January 17, 2008
Thursday, January 17th - updated at 5:00pm
Jesse has done well on his pressure-assisted respiratory tests. He has one more to go. Then doctors will review his chest x-rays and if all looks good his breathing tube will be removed at noon. Pray for God's hand in helping this all to go smoothly.
Dr. Mitchell just informed me that Jesse has developed "Chylothorax" - there is a link to a description in the "Links" section of this blog. It means some lymphatic fluid is accumulating in his chest and draining from the chest tube. The first course of treatment is to change his diet to a special formula. I think they are still planning to take out the breathing tube today.
5:00pm update
They did not take out the breathing tube today as they are waiting for "atelectasis" in his lungs to clear up a little more. (This is the collapse of lung tissue / aveoli in the upper lungs.) They are now planning to take out the breathing tube tomorrow.
Jesse was very happy this morning - looking around a lot. But after a while he got quite agitated - I think partially because he was hungry. He was taken off feeds at 6:00am in preparation for taking out the breathing tube. They ended up giving him more sedation to calm him down, so he has been knocked out all afternoon. They just started him on his new formula, called Portagen, but I am investigating using de-fatted breastmilk and hope to talk to a lactation consultant if possible.
Grandma Mari kept the boys overnight at her house last night and brought them down for a visit today. We had a nice lunch and then played a little and went to the library here at the hospital. Chad then took them to the Bass Pro Shop and I think they have been there a couple hours. The hospital is providing a hotel for a couple nights and we are planning for all of us to stay there tonight while Wanda comes to stay with Jesse overnight. Then the boys will have an exciting day at the Stock Show / Rodeo tomorrow. I am hoping I might be able to get a good night's rest in a real bed tonight!
Thanks for all the prayers and comments on the blog. We love to hear from everyone.
Love,
Kristan
Dr. Mitchell just informed me that Jesse has developed "Chylothorax" - there is a link to a description in the "Links" section of this blog. It means some lymphatic fluid is accumulating in his chest and draining from the chest tube. The first course of treatment is to change his diet to a special formula. I think they are still planning to take out the breathing tube today.
5:00pm update
They did not take out the breathing tube today as they are waiting for "atelectasis" in his lungs to clear up a little more. (This is the collapse of lung tissue / aveoli in the upper lungs.) They are now planning to take out the breathing tube tomorrow.
Jesse was very happy this morning - looking around a lot. But after a while he got quite agitated - I think partially because he was hungry. He was taken off feeds at 6:00am in preparation for taking out the breathing tube. They ended up giving him more sedation to calm him down, so he has been knocked out all afternoon. They just started him on his new formula, called Portagen, but I am investigating using de-fatted breastmilk and hope to talk to a lactation consultant if possible.
Grandma Mari kept the boys overnight at her house last night and brought them down for a visit today. We had a nice lunch and then played a little and went to the library here at the hospital. Chad then took them to the Bass Pro Shop and I think they have been there a couple hours. The hospital is providing a hotel for a couple nights and we are planning for all of us to stay there tonight while Wanda comes to stay with Jesse overnight. Then the boys will have an exciting day at the Stock Show / Rodeo tomorrow. I am hoping I might be able to get a good night's rest in a real bed tonight!
Thanks for all the prayers and comments on the blog. We love to hear from everyone.
Love,
Kristan
Wednesday, January 16, 2008
Wednesday - January 16th
Today's Happenings
We found out Jesse is on a thyroid medication that was started a couple days ago. They are hoping the issue will resolve once he is doing better, and that he won't have to continue on the medication.
They performed a test to see if high levels of CO2 would cause pulmonary hypertension (high pressure). Unfornately, the test showed this was the case. But it is fortunate it was done before removing Jesse off the respirator. It is thought this is what may have caused his cardiac arrest, but I need to discuss this more with the doctor to understand it better. It has to do with how Jesse's oxygen goes down when he sleeps, and the CO2 goes up. The high level of CO2 then induced pulmonary hypertension. The increased pressure prevents blood flow from the heart to lungs & back (maybe), and with no flow of blood the heart stops (called a pulmonary hypertensive crisis.) Jesse will be treated for pulmonary hypertension with medication, oxygen and possible nitric oxide.
Jesse passed his first respirator pressure test, where they turned the respirator to pressure-assist for 1 hour and he was breathing on his own. He will have another test at midnight and 4am, and if both go well he will be taken off the respirator tomorrow morning. Jesse has been moving and opening his eyes more and is ready to get that tube out of his nose!
Thank you everyone for the prayers, messages, calls, visits, snacks, gifts, and assistance with the boys and the farm! We couldn't do it without everyone's support. God has been so good in providing for all of our needs. Glory to God.
Love,
Chad & Kristan
We found out Jesse is on a thyroid medication that was started a couple days ago. They are hoping the issue will resolve once he is doing better, and that he won't have to continue on the medication.
They performed a test to see if high levels of CO2 would cause pulmonary hypertension (high pressure). Unfornately, the test showed this was the case. But it is fortunate it was done before removing Jesse off the respirator. It is thought this is what may have caused his cardiac arrest, but I need to discuss this more with the doctor to understand it better. It has to do with how Jesse's oxygen goes down when he sleeps, and the CO2 goes up. The high level of CO2 then induced pulmonary hypertension. The increased pressure prevents blood flow from the heart to lungs & back (maybe), and with no flow of blood the heart stops (called a pulmonary hypertensive crisis.) Jesse will be treated for pulmonary hypertension with medication, oxygen and possible nitric oxide.
Jesse passed his first respirator pressure test, where they turned the respirator to pressure-assist for 1 hour and he was breathing on his own. He will have another test at midnight and 4am, and if both go well he will be taken off the respirator tomorrow morning. Jesse has been moving and opening his eyes more and is ready to get that tube out of his nose!
Thank you everyone for the prayers, messages, calls, visits, snacks, gifts, and assistance with the boys and the farm! We couldn't do it without everyone's support. God has been so good in providing for all of our needs. Glory to God.
Love,
Chad & Kristan
Tuesday, January 15, 2008
Tuesday - January 15
An update on the happenings of today -
- 3 of the chest drainage tubes were removed (1 still in place)
- head ultrasound looked good
- tube feeding at 4cc per hour
- echocardiogram showed the surgical repair still looked good, but heart function is not as good as it was following the initial surgery and right ventricle was enlarged/thickened
- respirator was turned down slightly to 18 breaths per minute and oxygen rate down to 50% - keeping his oxygen saturation levels at 97-100%
- blood pressure is stable (controlled by heart medications)
- Kristan got a nap and a shower in the afternoon at the hotel where Chad stayed
Tomorrow
- CO2 test to see how his heart reacts to higher levels of CO2 that he may have when he goes to slee
- increase feedings 1cc every 4 hours
- gradually wean from respirator
This afternoon we went out to lunch. After the meal the waiter asked if we were in town for the National Western Stock Show. I told him no, that our son was in the hospital. He responded, "God bless his little heart." Chad & looked at each other, surprised at his exact words. We told him that God had blessed his heart and told him about all that Jesse had been through and how God had sustain him and us throughout it all. It turns out that the waiter, named Robert, a past cocaine addict, gang member, is a born-again Christian, and is now a preacher and has a ministry to the homeless. Chad and Robert had a good conversation about God, and God's limitless love and greatness. He said he would be praying for Jesse. We thank God for orchestrating this meeting with Robert. It was another encouragement to us.
Kristan and Chad
Monday, January 14, 2008
Monday's Events
We stand in awe today of God and his grace in giving Jesse a miraculous recovery over the last few days. This morning began with the return of Jesse's surgeon, Dr. Mitchell from Texas. Dr. Mitchell was completely unaware of Jesse's circumstances that occurred Friday and over the weekend, because he left town Thursday night for a funeral. This morning he received the old message from Friday of Jesse's cardiac arrest and told us that he was worried in thinking that little Jesse had died. Friday morning Jesse had gone through 45 minutes of CPR that was unsuccessful in starting his heart, and was put on a life support machine called ECMO. Dr. Mitchell didn't know what to expect as he came into the hospital and was very surprised to see Jesse and learn that he was off ECMO and doing so well. He said it was unbelievable that Jesse had come through this so well and said "God has really blessed Jesse because the majority of children in this kind of situation do not survive".
A few nurses were also here this morning who hadn't been here since Friday and had last seen Jesse put on life support. You should have seen all their smiles and tears as they saw him today still alive and his heart functioning on its own. One nurse said she and her little girl had prayed for Jesse all weekend and had been afraid to call and see what happened. She was so excited to see the answer to their prayers.
Later this morning Jesse's chest was closed once again, this time with staples. Just before and during the procedure we were having a hymn sing and prayer with 2 other families with children with heart problems. We were singing in the hallway leading to the CICU, and Dr. Mitchell said he could hear the music all the way back in the care unit, and said "Let them sing!" The closing of the chest was a fairly simple procedure, but at the end was complicated by Jesse's sensitivity to medications which sent his blood pressure falling extremely quickly. His heart did not completely stop, but Dr. Mitchell initiated CPR while administering epinephrine, and in 3 minutes his heart was functioning again, and has been relatively stable through the rest of the afternoon. We were thankful that Dr. Mitchell had returned this morning and performed the procedure himself. Praise the Lord!
This evening Jesse is getting his first feeding since being here - through a tube in his nose at a rate of 1cc per hour. (There are 30cc's in 1 ounce.) We pray that his stomach tolerates the food well, and he will start getting stronger.
We continue to give thanks to God for his mercy and protection.
Love,
Kristan and Chad
A few nurses were also here this morning who hadn't been here since Friday and had last seen Jesse put on life support. You should have seen all their smiles and tears as they saw him today still alive and his heart functioning on its own. One nurse said she and her little girl had prayed for Jesse all weekend and had been afraid to call and see what happened. She was so excited to see the answer to their prayers.
Later this morning Jesse's chest was closed once again, this time with staples. Just before and during the procedure we were having a hymn sing and prayer with 2 other families with children with heart problems. We were singing in the hallway leading to the CICU, and Dr. Mitchell said he could hear the music all the way back in the care unit, and said "Let them sing!" The closing of the chest was a fairly simple procedure, but at the end was complicated by Jesse's sensitivity to medications which sent his blood pressure falling extremely quickly. His heart did not completely stop, but Dr. Mitchell initiated CPR while administering epinephrine, and in 3 minutes his heart was functioning again, and has been relatively stable through the rest of the afternoon. We were thankful that Dr. Mitchell had returned this morning and performed the procedure himself. Praise the Lord!
This evening Jesse is getting his first feeding since being here - through a tube in his nose at a rate of 1cc per hour. (There are 30cc's in 1 ounce.) We pray that his stomach tolerates the food well, and he will start getting stronger.
We continue to give thanks to God for his mercy and protection.
Love,
Kristan and Chad
God's done it again!
Praise God, Jesse has made it through another procedure! His chest is closed and his heart is beating on its own. He is still on a ventilator and requiring quite a lot of medications and so on, but he's doing good.
Once again, Kristan and Chad will be on later (hopefully) to tell you some of the details of amazing things that have transpired in the last 24 hours. But, we wanted to tell all of the prayer warriors - THANK YOU!
Jesse is very sensitive to anesthethics, and at the same time very resistant to pain medicines. This makes it challenging to manage his pain and his sedation.
Please continue to cover Jesse in prayer - that God will protect him from pain and that he will rest easily as he recovers from another major procedure. Also, pray that he will be protected from any bleeding or infection.
We had a wonderful time of prayer and singing this morning with our own family, as well as 2 other Christian, home-schooling, heart-patient families here at the hospital that God has connected us with. It reminded me of in Acts 11, Paul and Silas are in jail and they were "praying and signing hymns to God, and the prisoners were listening to them, and suddenly there was a great earthquake, so that the foundations of the prison were shaken." We pray that this time of praising God, despite the scary circumstances, will bring God glory.
We've met many other families here. Please pray for little Annasophia - 14 days old - who also had her chest closed today following heart surgery on Saturday. Pray also for Jonathan - 3 1/2 years old following 4 heart surgeries for Hypoplastic Left Heart Syndrome (HLHS). We're also praying for Jordan, Jayden, Ayla and Elizabeth who are fellow CICU patients.
More to follow,
Kim
Once again, Kristan and Chad will be on later (hopefully) to tell you some of the details of amazing things that have transpired in the last 24 hours. But, we wanted to tell all of the prayer warriors - THANK YOU!
Jesse is very sensitive to anesthethics, and at the same time very resistant to pain medicines. This makes it challenging to manage his pain and his sedation.
Please continue to cover Jesse in prayer - that God will protect him from pain and that he will rest easily as he recovers from another major procedure. Also, pray that he will be protected from any bleeding or infection.
We had a wonderful time of prayer and singing this morning with our own family, as well as 2 other Christian, home-schooling, heart-patient families here at the hospital that God has connected us with. It reminded me of in Acts 11, Paul and Silas are in jail and they were "praying and signing hymns to God, and the prisoners were listening to them, and suddenly there was a great earthquake, so that the foundations of the prison were shaken." We pray that this time of praising God, despite the scary circumstances, will bring God glory.
We've met many other families here. Please pray for little Annasophia - 14 days old - who also had her chest closed today following heart surgery on Saturday. Pray also for Jonathan - 3 1/2 years old following 4 heart surgeries for Hypoplastic Left Heart Syndrome (HLHS). We're also praying for Jordan, Jayden, Ayla and Elizabeth who are fellow CICU patients.
More to follow,
Kim
Jesse pictures this morning
1. Warm feet & Pink toes!
2. Jesse with his nurse, Maggie. Maggie is who performed CPR on Friday.
3. Jesse's sweet little face.
4. Look at all that equipment! What a testimony this little boy's gonna have some day.
2. Jesse with his nurse, Maggie. Maggie is who performed CPR on Friday.
3. Jesse's sweet little face.
4. Look at all that equipment! What a testimony this little boy's gonna have some day.
He's WARM - Closing chest at 11:00!
Kristan & Chad want to personally post, but I wanted to run down here & update y'all.
Jesse is having his chest closed up at 11:00 am - that's in about 1 hour and 15 minutes! It is absolutely a miracle. He's warm for the first time since the original surgery. His blood pressure has leveled out. His kidneys are working. He has woken up and squirmed around several times, but they keep sedating him back to sleep. Let me repeat, it is absolutely a miracle!!! Praise God!
I won't give you any of the other awesome God stories. I'll leave that to Kristan & Chad to share with you, but I wanted to update everyone and ask you to pray from 11:00 on ... the hours after they close his chest can be "touch-and-go"
Praise God from whom ALL blessings flow.
Praise Him all creatures here below.
Praise Him above ye heavenly host.
Praise Father, Son, and Holy Ghost.
Amen.
Love, Kim
Jesse is having his chest closed up at 11:00 am - that's in about 1 hour and 15 minutes! It is absolutely a miracle. He's warm for the first time since the original surgery. His blood pressure has leveled out. His kidneys are working. He has woken up and squirmed around several times, but they keep sedating him back to sleep. Let me repeat, it is absolutely a miracle!!! Praise God!
I won't give you any of the other awesome God stories. I'll leave that to Kristan & Chad to share with you, but I wanted to update everyone and ask you to pray from 11:00 on ... the hours after they close his chest can be "touch-and-go"
Praise God from whom ALL blessings flow.
Praise Him all creatures here below.
Praise Him above ye heavenly host.
Praise Father, Son, and Holy Ghost.
Amen.
Love, Kim
Sunday, January 13, 2008
Newest Updates
Jesse hadn't pee'd in several hours, but praise God, now he did. Please continue to pray for kidney function.
His blood pressure is fluxuating too much - going up too high & down too low. That needs to level out. Pray that his blood pressure stays strong & steady.
The next step is for Jesse to level out so they can close up his chest.
Matthew, Collin & Sam, along with the Brompton family, came to visit today. It was so good to see them.
Thank you for your prayers.
His blood pressure is fluxuating too much - going up too high & down too low. That needs to level out. Pray that his blood pressure stays strong & steady.
The next step is for Jesse to level out so they can close up his chest.
Matthew, Collin & Sam, along with the Brompton family, came to visit today. It was so good to see them.
Thank you for your prayers.
Praise God - Jesse is OFF ECMO!
Starting around 3am, the doctors gradually weaned Jesse off the ECMO machine. They got him down to the lowest level possible & he was still doing well. Then, they clamped the machine off to see how he'd do. He did need some heart medications, but his heart did recover.
So, around 10am, they disconnected Jesse from the ECMO machine. Praise God, his heart is beating on its own! He is still on a ventilator and all kinds of other equipment, but he made it!
Please continue to pray for Jesse. The doctor reiterated that he is not "out of the woods" and that he has a long road ahead of him. They have still not figured out what caused Jesse's heart to stop beating on Friday.
TO GOD BE THE GLORY
To God be the glory, great things He hath done;
So loved He the world that He gave us His Son,
Who yielded His life, an atonement for sin,
And opened the lifegate, that all may go in.
O perfect redemption, the purchase of blood,
To every believer, the promise of God;
The vilest offender who truly believes,
That moment from Jesus a pardon receives.
Great things He hath taught us, great things He hath done,
And great our rejoicing through Jesus the Son;
But purer, and higher, and greater will be
Our wonder, our transport, when Jesus we see!
Refrain:
Praise the Lord, praise the Lord,
Let the earth hear His voice!
Praise the Lord, praise the Lord,
Let the people rejoice!
O come to the Father, through Jesus the Son,
And give Him the glory, great things He hath done!
—Fanny J. Crosby (1820-1915)
Psalm 33:13-22
The LORD looks down from heaven; he sees all the children of man;
from where he sits enthroned he looks out on all the inhabitants of the earth,
he who fashions the hearts of them all and observes all their deeds.
The king is not saved by his great army; a warrior is not delivered by his great strength.
The war horse is a false hope for salvation, and by its great might it cannot rescue.
Behold, the eye of the LORD is on those who fear him, on those who hope in his steadfast love, that he may deliver their soul from death and keep them alive in famine.
Our soul waits for the LORD; he is our help and our shield.
For our heart is glad in him, because we trust in his holy name.
Let your steadfast love, O LORD, be upon us, even as we hope in you.
So, around 10am, they disconnected Jesse from the ECMO machine. Praise God, his heart is beating on its own! He is still on a ventilator and all kinds of other equipment, but he made it!
Please continue to pray for Jesse. The doctor reiterated that he is not "out of the woods" and that he has a long road ahead of him. They have still not figured out what caused Jesse's heart to stop beating on Friday.
TO GOD BE THE GLORY
To God be the glory, great things He hath done;
So loved He the world that He gave us His Son,
Who yielded His life, an atonement for sin,
And opened the lifegate, that all may go in.
O perfect redemption, the purchase of blood,
To every believer, the promise of God;
The vilest offender who truly believes,
That moment from Jesus a pardon receives.
Great things He hath taught us, great things He hath done,
And great our rejoicing through Jesus the Son;
But purer, and higher, and greater will be
Our wonder, our transport, when Jesus we see!
Refrain:
Praise the Lord, praise the Lord,
Let the earth hear His voice!
Praise the Lord, praise the Lord,
Let the people rejoice!
O come to the Father, through Jesus the Son,
And give Him the glory, great things He hath done!
—Fanny J. Crosby (1820-1915)
Psalm 33:13-22
The LORD looks down from heaven; he sees all the children of man;
from where he sits enthroned he looks out on all the inhabitants of the earth,
he who fashions the hearts of them all and observes all their deeds.
The king is not saved by his great army; a warrior is not delivered by his great strength.
The war horse is a false hope for salvation, and by its great might it cannot rescue.
Behold, the eye of the LORD is on those who fear him, on those who hope in his steadfast love, that he may deliver their soul from death and keep them alive in famine.
Our soul waits for the LORD; he is our help and our shield.
For our heart is glad in him, because we trust in his holy name.
Let your steadfast love, O LORD, be upon us, even as we hope in you.
Saturday, January 12, 2008
Coming off ECMO Sunday, God willing!
Our prayers have been answered and throughout the day Jesse's heart has continued to strengthen. They have turned down the ECMO machine about 25% and his heart has picked up the difference, and maintained a good blood pressure and heart rate. This afternoon I even got to hear his heart through a stethoscope. His lung function is also improving. The ventilator is set at 12 breaths per minute, and he is taking approximately an additional 10 breaths on his own. His skin is getting more pink color in it.
The doctors are pleased and are planning to to try to gradually wean him off the ECMO machine throughout the night, with hopes of removing it at 10:00am tomorrow, Sunday morning.
Prayer Requests -
The doctors are pleased and are planning to to try to gradually wean him off the ECMO machine throughout the night, with hopes of removing it at 10:00am tomorrow, Sunday morning.
Prayer Requests -
- that the doctors have wisdom, discernment and skill and a good night sleep
- that the night goes well and Jesse's heart will take over when taken off the machine
- that Jesse will be protected from all of the risks associated with being on ECMO - bleeding or clotting, infection, stroke, kidney & liver problems
- that we will have peace, and trust in God throughout this critical time
- that would God would be glorified
Love, Kristan
Kristan's testimony is online
On Sunday, December 30th, Kristan and Chad had a dedication ceremony for Jesse at their church - dedicating Jesse's life to the Lord. Prior to the surgery, Kristan shared her very moving testimony to God's faithfulness in her life. Kim recorded it and you can listen to it here.
http:\\www.crossroadtech.com\kristan\Kristan.wma
The "K"in the 2nd Kristan is capitalized, so make sure you cut/paste the link as is.
It's a big file - takes about 30 minutes.
We pray it blesses you as much as it has us.
http:\\www.crossroadtech.com\kristan\Kristan.wma
The "K"in the 2nd Kristan is capitalized, so make sure you cut/paste the link as is.
It's a big file - takes about 30 minutes.
We pray it blesses you as much as it has us.
A Little Bit of Good News
Hi - it's actually me, Kristan, posting! Thanks Kim for all of your work in setting up and updating Jesse's blog.
I just got a few hour sleep and was coming up to see Jesse, praying that God would continue to strengthen Jesse's little heart. When I came in I could see the red line on the monitor was once again moving up and down. His heart has started to pump again. It is a very weak pump, but a good inital step toward his recovery. I was reminded that "With man this is impossible, but with God all things are possible." (Matthew 19:26). He is in God's hands, and those are the hands we want to be in!
I just got a few hour sleep and was coming up to see Jesse, praying that God would continue to strengthen Jesse's little heart. When I came in I could see the red line on the monitor was once again moving up and down. His heart has started to pump again. It is a very weak pump, but a good inital step toward his recovery. I was reminded that "With man this is impossible, but with God all things are possible." (Matthew 19:26). He is in God's hands, and those are the hands we want to be in!
Friday, January 11, 2008
Leaving/Reading Comments
We've heard that some people are having a hard time leaving a comment. We'd love to read them, so here's some instructions.
Click on the little link called "comments". This enables you to both LEAVE or READ the comments. Whatever comment you leave is a part of the blog and can be read by anyone.
If you'd like to leave a comment, you can either sign in or just leave an "anonymous" one. Anonymous is easier because you don't have to sign in. You are welcome to click "anonymous" and just leave us your name in the comment you leave. You also need to type in those weird letters in the "Word Verification" box - they use these to cut down on "spam."
We would love for you to let us know not only your name, but also where you're located, because we know there are people praying for Jesse all over America and maybe in other parts of the world!
Thanks!
Click on the little link called "comments". This enables you to both LEAVE or READ the comments. Whatever comment you leave is a part of the blog and can be read by anyone.
If you'd like to leave a comment, you can either sign in or just leave an "anonymous" one. Anonymous is easier because you don't have to sign in. You are welcome to click "anonymous" and just leave us your name in the comment you leave. You also need to type in those weird letters in the "Word Verification" box - they use these to cut down on "spam."
We would love for you to let us know not only your name, but also where you're located, because we know there are people praying for Jesse all over America and maybe in other parts of the world!
Thanks!
Jesse's Heart Condition - CAVC
This is an introductory website describing the type of heart condition that Jesse has. Keep in mind that every one of God's creations is unique and this is not "exactly" what Jesse's heart looks like, but it's similar.
http://www.americanheart.org/presenter.jhtml?identifier=11067
http://www.americanheart.org/presenter.jhtml?identifier=11067
God Sightings by Kim
I can see God's handprints here as we sit and pray and seek God's face and I'd like to share them with you.
When Jesse's heart stopped beating, it was while the doctors were doing rounds and he was able to get immediate attention, rather than waiting for a doctor to arrive.
Kristan & Chad had visited a church in Greeley a year ago. While there they met a wonderful family whose son had already had 2 heart surgeries and was scheduled for a third. Kristan remembers commenting on how hard that would be. Yesterday, on the day of Jesse's surgery, their son (Jonathan) was flown here to Children's Hospital. Kristan and Jonathan's mom (Kimberly) recognized one another and Kimberly prayed with us yesterday. This morning Kristan asked me to go tell her what was going on. Kimberly once again prayed with me. We are thankful for God providing her here as encouragement, that we would mutually encourage one another & lift each other up in prayer, and also that they would be able to encourage each other after Jesse & Jonathan (God willing!) go home from the hospital.
God is an "on-time" God. He is never late. We praise Him for being a God of perfect timing. He knows our every need before we've even spoken them.
I'm thankful that God impressed upon Kristan for Chad to sleep at the hospital last night, so he was able to be with Jesse so quickly.
We are thankful for the many people who are praying for us. Know that it is an encouragement to us, and that God is glorified in your prayers.
Truly,
Kim (Kristan's sister)
When Jesse's heart stopped beating, it was while the doctors were doing rounds and he was able to get immediate attention, rather than waiting for a doctor to arrive.
Kristan & Chad had visited a church in Greeley a year ago. While there they met a wonderful family whose son had already had 2 heart surgeries and was scheduled for a third. Kristan remembers commenting on how hard that would be. Yesterday, on the day of Jesse's surgery, their son (Jonathan) was flown here to Children's Hospital. Kristan and Jonathan's mom (Kimberly) recognized one another and Kimberly prayed with us yesterday. This morning Kristan asked me to go tell her what was going on. Kimberly once again prayed with me. We are thankful for God providing her here as encouragement, that we would mutually encourage one another & lift each other up in prayer, and also that they would be able to encourage each other after Jesse & Jonathan (God willing!) go home from the hospital.
God is an "on-time" God. He is never late. We praise Him for being a God of perfect timing. He knows our every need before we've even spoken them.
I'm thankful that God impressed upon Kristan for Chad to sleep at the hospital last night, so he was able to be with Jesse so quickly.
We are thankful for the many people who are praying for us. Know that it is an encouragement to us, and that God is glorified in your prayers.
Truly,
Kim (Kristan's sister)
Psalm 42
Today, our pastor (Ron) and our Sunday School teacher (Bob) came to Denver. This is the Psalm that Pastor Ron read. The word "hart" in the King James Bible is translated "deer" in modern translations which Kristan especially found interesting given Jesse's circumstances.
Psalm 42
1As the hart panteth after the water brooks, so panteth my soul after thee, O God.
2My soul thirsteth for God, for the living God: when shall I come and appear before God?
3My tears have been my meat day and night, while they continually say unto me, Where is thy God?
4When I remember these things, I pour out my soul in me: for I had gone with the multitude, I went with them to the house of God, with the voice of joy and praise, with a multitude that kept holyday.
5Why art thou cast down, O my soul? and why art thou disquieted in me? hope thou in God: for I shall yet praise him for the help of his countenance.
6O my God, my soul is cast down within me: therefore will I remember thee from the land of Jordan, and of the Hermonites, from the hill Mizar.
7Deep calleth unto deep at the noise of thy waterspouts: all thy waves and thy billows are gone over me.
8Yet the LORD will command his lovingkindness in the day time, and in the night his song shall be with me, and my prayer unto the God of my life.
9I will say unto God my rock, Why hast thou forgotten me? why go I mourning because of the oppression of the enemy?
10As with a sword in my bones, mine enemies reproach me; while they say daily unto me, Where is thy God?
11Why art thou cast down, O my soul? and why art thou disquieted within me?
hope thou in God: for I shall yet praise him, who is the health of my countenance, and my God.
Psalm 42
1As the hart panteth after the water brooks, so panteth my soul after thee, O God.
2My soul thirsteth for God, for the living God: when shall I come and appear before God?
3My tears have been my meat day and night, while they continually say unto me, Where is thy God?
4When I remember these things, I pour out my soul in me: for I had gone with the multitude, I went with them to the house of God, with the voice of joy and praise, with a multitude that kept holyday.
5Why art thou cast down, O my soul? and why art thou disquieted in me? hope thou in God: for I shall yet praise him for the help of his countenance.
6O my God, my soul is cast down within me: therefore will I remember thee from the land of Jordan, and of the Hermonites, from the hill Mizar.
7Deep calleth unto deep at the noise of thy waterspouts: all thy waves and thy billows are gone over me.
8Yet the LORD will command his lovingkindness in the day time, and in the night his song shall be with me, and my prayer unto the God of my life.
9I will say unto God my rock, Why hast thou forgotten me? why go I mourning because of the oppression of the enemy?
10As with a sword in my bones, mine enemies reproach me; while they say daily unto me, Where is thy God?
11Why art thou cast down, O my soul? and why art thou disquieted within me?
hope thou in God: for I shall yet praise him, who is the health of my countenance, and my God.
New Updates
Jesse continues to be stable. The machine he's on is actually called an "ECMO." It is keeping the blood running through his body, so that his heart can rest from all he's been through.
The doctors primary concern is some kind of damage to Jesse's brain while his heart wasn't beating. They would like to do a CT scan, but can't because he's still hooked up to the ECMO. So, instead they have done an ultrasound to check for bleeding (which came back showing no bleeding - praise GOD), and they are going to do an EEG to look for brain impulses. Please pray this comes back positively.
Jesse's heart had been beating regulary on its own (even though it's not really pumping the blood), but it is no longer beating. This is concerning, but not unusual. We pray that God is allowing Jesse's heart to rest and heal at this time while the ECMO is working, so that it'll be able to work at its best when it needs to. A nurse we talked to said that she'd like to see his heart beating again on his own in 12-16 hours.
They have also taken Jesse off the medications that were encouraging his heart to beat so that his heart could rest and recover.
We appreciate all of your prayers and comments. We pray that God will be glorified as He shows Himself able to do more than we can even ask or imagine.
The doctors primary concern is some kind of damage to Jesse's brain while his heart wasn't beating. They would like to do a CT scan, but can't because he's still hooked up to the ECMO. So, instead they have done an ultrasound to check for bleeding (which came back showing no bleeding - praise GOD), and they are going to do an EEG to look for brain impulses. Please pray this comes back positively.
Jesse's heart had been beating regulary on its own (even though it's not really pumping the blood), but it is no longer beating. This is concerning, but not unusual. We pray that God is allowing Jesse's heart to rest and heal at this time while the ECMO is working, so that it'll be able to work at its best when it needs to. A nurse we talked to said that she'd like to see his heart beating again on his own in 12-16 hours.
They have also taken Jesse off the medications that were encouraging his heart to beat so that his heart could rest and recover.
We appreciate all of your prayers and comments. We pray that God will be glorified as He shows Himself able to do more than we can even ask or imagine.
Prayer needed!
This morning at approximately 7:45 Jesse had an acute event. He went into cardiac arrest, his heart stopped beating. The nurse performed CPR for approximately 20 minutes and his chest was re-opened.
Jesse has been re-hooked up to the "heart-lung bypass machine" which cleans & oxygenates his blood. His chest is still open, but they put some kind of patch on it. It appears that the heart is still functioning & it is beating regularly on its own. The doctors put in a line to his lungs to measure the "pulmonary hypertension" - the pressure in his lungs.
They have not identified the cause of this "event." It was a very sudden event with no forewarning. The doctors have reviewed Jesse's records from the past day & evening and he was stable & doing very well. The nurse (Maggie) even said she was telling her student nurse that she's training that Jesse was a model patient and was doing so great. She was standing with Jesse when this happened and saw him turn blue. It took her by surprise.
Praises:
Maggie was with Jesse when it happened and was able to respond quickly.
Kristan got several hours of sleep last night.
Kristan walked in to see Jesse at the moment that this began, so she was able to be with him.
Jesse's heart is beating on its own.
Prayer requests:
That there would be no damage to the heart repairs. Particularly because they were performing CPR it is possible that some of the sutures would be damaged, or that the repair would be hurt. Pray God would protect Jesse's heart
Jesse would not become anemic.
While on the heart-lung bypass machine, they have to keep Jesse's blood thinned & use "blood products." These have many negative side-effects, such as stroke, bleeding, infection, or damage to the liver or kidneys.
The doctors want to begin weaning Jesse off this machine in the next 48-72 hours, to limit the risks involved. Pray that would be possible.
We appreciate your prayers.
Please leave comments & scripture for us on this blog. We'll keep you updated.
Jesse has been re-hooked up to the "heart-lung bypass machine" which cleans & oxygenates his blood. His chest is still open, but they put some kind of patch on it. It appears that the heart is still functioning & it is beating regularly on its own. The doctors put in a line to his lungs to measure the "pulmonary hypertension" - the pressure in his lungs.
They have not identified the cause of this "event." It was a very sudden event with no forewarning. The doctors have reviewed Jesse's records from the past day & evening and he was stable & doing very well. The nurse (Maggie) even said she was telling her student nurse that she's training that Jesse was a model patient and was doing so great. She was standing with Jesse when this happened and saw him turn blue. It took her by surprise.
Praises:
Maggie was with Jesse when it happened and was able to respond quickly.
Kristan got several hours of sleep last night.
Kristan walked in to see Jesse at the moment that this began, so she was able to be with him.
Jesse's heart is beating on its own.
Prayer requests:
That there would be no damage to the heart repairs. Particularly because they were performing CPR it is possible that some of the sutures would be damaged, or that the repair would be hurt. Pray God would protect Jesse's heart
Jesse would not become anemic.
While on the heart-lung bypass machine, they have to keep Jesse's blood thinned & use "blood products." These have many negative side-effects, such as stroke, bleeding, infection, or damage to the liver or kidneys.
The doctors want to begin weaning Jesse off this machine in the next 48-72 hours, to limit the risks involved. Pray that would be possible.
We appreciate your prayers.
Please leave comments & scripture for us on this blog. We'll keep you updated.
Thursday, January 10, 2008
Prayer Requests
Please join us in prayer. Here are some specific requests:
That Jesse, Kristan and Chad (as well as the doctors, nurses and other visitors) will be free from infection or illness. Even a cold can be life-threatening to Jesse at this time.
That the doctors will be able to diagnose and treat what is causing Jesse's oxygen level to drop when he slept. Right now, on the ventilator, his oxygen level is NORMAL - praise God - so maybe this is behind him, but if not, it would be such a blessing if they could figure out if there is some sleep-related oxygen problem.
That Kristan and Chad would be filled with peace and wisdom.
That Jesse will come off the ventilator and sedation smoothly.
That Matthew, Collin and Sam would stay healthy and be able to visit soon.
That GOD would be GLORIFIED in all things.
That Jesse, Kristan and Chad (as well as the doctors, nurses and other visitors) will be free from infection or illness. Even a cold can be life-threatening to Jesse at this time.
That the doctors will be able to diagnose and treat what is causing Jesse's oxygen level to drop when he slept. Right now, on the ventilator, his oxygen level is NORMAL - praise God - so maybe this is behind him, but if not, it would be such a blessing if they could figure out if there is some sleep-related oxygen problem.
That Kristan and Chad would be filled with peace and wisdom.
That Jesse will come off the ventilator and sedation smoothly.
That Matthew, Collin and Sam would stay healthy and be able to visit soon.
That GOD would be GLORIFIED in all things.
Jesse following surgery
Jesse has come out of surgery and is starting to respond. He opened his eyes when he heard Kristan's voice and has been responsive to touch. He is still heavily sedated and, as you can see, is hooked up to all kinds of monitors and drains. He is still on a respirator which is breathing for him. He will be gradually weaned off the respirator and the sedation over the next day or so.
Psalm 28:6-9
Blessed be the LORD!
For he has heard the voice of my pleas for mercy.
The LORD is my strength and my shield;
in him my heart trusts, and I am helped;
my heart exults, and with my song I give thanks to him.
The LORD is the strength of his people;
he is the saving refuge of his anointed.
Oh, save your people and bless your heritage!
Be their shepherd and carry them forever.
Pastor Dan read this Psalm in praise following Jesse's surgery
For he has heard the voice of my pleas for mercy.
The LORD is my strength and my shield;
in him my heart trusts, and I am helped;
my heart exults, and with my song I give thanks to him.
The LORD is the strength of his people;
he is the saving refuge of his anointed.
Oh, save your people and bless your heritage!
Be their shepherd and carry them forever.
Pastor Dan read this Psalm in praise following Jesse's surgery
The Big Day!
What a day this has been. It has been full of hidden blessings. The surgeon described the surgery as "Challenging" so let me describe some of the challenges he was presented with.
Jesse has one big valve across his heart, rather than two separate ones. This big valve has multiple "leaflets" that close and open. The surgeon's job is to separate these multiple leaflets into two separate valves - one on each side of the heart. To complicate matters, one (or more) of the leaflets had a "cleft" (split) in it, so he also had to correct the cleft. The problem is that if he stitches it too much, it can be hard to close, but if he doesn't stitch it enough it will leak.
Another issue is that these leaflets open and close by little strings that attach to them - similar to parachut strings. There were many of these strings, which he had to work around carefully to not damage them or have them in the wrong place.
To further complicate matters, the ventricular (bottom) hole in Jesse's heart was much more severe than was expected and there was an additional small hole in the very bottom of the septum that they were unable to close without causing damage to his heart.
Not to be outdone, Jesse had not only an extra chromosome, but also an extra "Superior Vena Cava." This made Jesse more at risk for "heart block" which means something like there was a greater chance of the heart not restarting up again with a good rhythm after the surgery.
Jesse was showing signs of "pulmonary hypertension" - elevated pressure in his lungs - prior to surgery and they were really having to watch for damage to Jesse's lungs.
Finally, when they began to close up Jesse's chest following surgery, he had a drastic drop in blood pressure which concerned them.
Now - why do we share all of these "bad things" - to show that NOTHING IS IMPOSSIBLE WITH GOD!
Jesse's surgery was successful. The pressure in his lungs is normal at this time. There is minimal leakage in the valves. His heart is beating without a pacemaker. His blood pressure returned to normal. To God be the Glory for the mighty things He has done!
Jesse has one big valve across his heart, rather than two separate ones. This big valve has multiple "leaflets" that close and open. The surgeon's job is to separate these multiple leaflets into two separate valves - one on each side of the heart. To complicate matters, one (or more) of the leaflets had a "cleft" (split) in it, so he also had to correct the cleft. The problem is that if he stitches it too much, it can be hard to close, but if he doesn't stitch it enough it will leak.
Another issue is that these leaflets open and close by little strings that attach to them - similar to parachut strings. There were many of these strings, which he had to work around carefully to not damage them or have them in the wrong place.
To further complicate matters, the ventricular (bottom) hole in Jesse's heart was much more severe than was expected and there was an additional small hole in the very bottom of the septum that they were unable to close without causing damage to his heart.
Not to be outdone, Jesse had not only an extra chromosome, but also an extra "Superior Vena Cava." This made Jesse more at risk for "heart block" which means something like there was a greater chance of the heart not restarting up again with a good rhythm after the surgery.
Jesse was showing signs of "pulmonary hypertension" - elevated pressure in his lungs - prior to surgery and they were really having to watch for damage to Jesse's lungs.
Finally, when they began to close up Jesse's chest following surgery, he had a drastic drop in blood pressure which concerned them.
Now - why do we share all of these "bad things" - to show that NOTHING IS IMPOSSIBLE WITH GOD!
Jesse's surgery was successful. The pressure in his lungs is normal at this time. There is minimal leakage in the valves. His heart is beating without a pacemaker. His blood pressure returned to normal. To God be the Glory for the mighty things He has done!
Waiting for Surgery
We came down to Denver yesterday for Jesse's pre-op work. We met with the surgeon (Dr. Mitchell) and the anesthesiologist (Dr. Markowitz). Our meeting with Dr. Mitchell went very well and we learned that he is a Christian. He was a humble man with a good "bedside manner" and he shared with us that he is a new dad for the first time. We're thankful for God directing our steps to him.
We stayed the night in "The Timbers" courtesy of the hospital. Jesse wasn't allowed to eat past midnight and Kristan worried how he'd do. He did great, as you can see from these pictures taken shortly before surgery.
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