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)
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