11:35 PM Stephen's temperature is down to 100.6. We are so relieved it has come down. - Jeff

11:15PM Stephen's temperature is back down to a little over 102. I will be adding more pictures by tomorrow to the picture gallery. - Jeff

10:00 Stephen has had a fever of over 104.9 tonight. They have him on a cooling blanket to bring his temperature down and they are giving him Motrin now. He needed a break, so they gave him more oxygen on the ventilator.His blood pressure is still holding steady. He has had a lot of visitors today and we appreciate all the support. - Jeff and Myra

11:30 PM - Stephen is still stable with his blood pressure but he has been running a fever tonight. His temperature was 103.6 at 6:30 and now is normal after they gave him Tylenol and cold cloths soaked in ice water. The singing Chaplain (Kenny) came back and we all sang again while he played the keyboard. One of the other chaplains came and sang as well. We hope Stephen enjoyed it. The music also ministered to all of us and we all sang and cried. - Jeff and Myra

11:30PM - Stephen is still stable with his blood pressure but he has been running a fever late tonight. His temperature was 103 at 8:30 and now is 102.2 after they gave him Tylenol and cold cloths soaked in ice water. One of the Chaplains brought a piano into the room and played and sang with Myra and Anita. Stephen really enjoys music and we are sure he enjoyed it. Many of the doctors and staff came by and were touched. Some were crying and worshiping with the music. Stephen is still having a positive effect on people even while he is in the hospital!! It would make him happy to know this. Please continue to pray for him. We would like thank everyone for your comments, love, and concern. - Jeff and Myra

11:45 PM - Stephen is still resting well, but he is sedated. His stomach area is still swollen but he has had some activity, so that is good. His blood pressure is remaining stable and he doesn't have a fever. We did have a meeting with the doctors today. They feel they have exhausted all options of medical intervention with Stephen's condition. They will continue to keep Stephen comfortable and all the staff has done such a wonderful job taking care of him. We do need a miracle for Stephen to get better. We are praying for God's will to be done in Stephen's life. Myra and I really appreciate all the support that we have received. It means more than any of you could know during this difficult time. God bless you all. - Jeff

11:00PM - Stephen's blood pressure numbers are still good. He has been running a low-grade fever again. His stomach is swelling again as the doctors believe he needs some action in his bowels and they are still giving him a laxative. They are holding off on feeding him through the feeding tube but he is getting nutrients through the IV. The time of our meeting with the doctors has been changed to 10:30 AM tomorrow instead of 7:30 AM. Please pray that God will give the doctors, Myra and myself wisdom to discuss any options and that as a result of this meeting, new ideas come about on how to treat Stephen to make him better. - Jeff

11:15 Stephen is still resting well and his blood pressure is staying in the higher 30's on his diastolic and around 170 on his systolic. He doesn't have a fever. They had to stop feeding him as he is having trouble digesting his food. They ran a CT Scan today just to be sure a tracheotomy wasn't possible. Unfortunately, it verified Stephen has major arteries that would be super high risk for the surgery. We are still set up to meet with a group of doctors on Wednesday morning. Please pray that something will be revealed that can help Stephen recover from this round of sickness. He has been on the ventilator for 18 days now. - Jeff

11:50PM The cardiologists decided not to do an Echo on Stephen's heart as it wasn't necessary. His heart function is good but the valves still have leakage which is the main problem. They are debating about the type of drug to use that will best keep his diastolic up and keep his systolic lower especially if they turn down the sedation medicine. While Stephen's diastolic has been staying in the 30's to 50's, his systolic has been 140 -180. Stephen's creatinine level (this is a measure of kidney function) was 1.2 yesterday but was back down to 1 today which is better but please pray it goes down more. This will allow the doctors to use contrast for a CT scan to look at his lower neck area to determine if there is any way to do a tracheostomy. Stephen did have a slight fever today but it has gone back down. His belly was as large as 89 cm but is now down to 70 cm. - Jeff and Myra

1:30AM Sunday, January 25th Stephen's diastolic number has remained in the 40's today. At one point, it went up to the 60's. The systolic number was high today; it was in the 160's. The doctors may choose to use Lisinopril again to help lower this number? They may do an ECHO of his heart tomorrow to see how things are looking.
One of the doctor's will check with a radiologist to see if it's possible to do an ultrasound on Stephen's neck to get a better picture of the arteries running along the path where a tracheostomy would be placed. Also a doctor will check with an E.N.T. here to see if there are any new procedures available for tracheostomies.
Stephen's stomach size has decreased! They are still saying it contains air, no blockages. They have started feeding him a formula that is very elemental in make up to see how his body will react. They are slowly increasing the amount given per hour in increments of 5ccs per day or as tolerated. (Today we reached 10ccs per hour.) This same formula was given to him as an infant when they discovered a similar condition inside his stomach when performing bilateral hernia surgery. The formula had agreed with his system back then. This is our hope now.
Please pray that it will work for him. The goal is to get his system moving again and that the remaining air in his stomach will be pushed out by the food. When his stomach returns to normal size, this should also help his lungs. - Myra

1:00AM Saturday, January 24 - Today, Stephen's diastolic number was good ... 30's and 40's. They gave him some potassium because his levels were a little low, probably due to all the diuretics. They did a good x-ray of his stomach. They said the longer it takes for all the results to come back on this test, the better. So far, no blockages are showing up, only air. His tummy actually looks a little smaller. They have just begun to start feeding him some very elemental formula (Portagen, which is a pre-digested type of formula). They are starting very slowly (5ccs per hour). Please pray that this will get everything moving in his stomach. Myra recommended this formula since he had to be changed to it as an infant, due to some ascites that was found in his stomach during some surgery. Please pray that this formula will AGREE with him as it did when he was just a baby. Also, on all of his lab samples taken, no bacteria has grown.We are scheduled to attend a big meeting with Stephen's I.C.U doctor(s), including an E.N.T., Stephen's regular cardiologist, and his regular pulmonologist. We are asking that everyone pray that the doctors will be able to come up with some ideas on what direction we need to go in order to help Stephen get well soon. We need our Stephen back. - Myra

12:30AM Friday, January 23, 2009 Sorry for the late posting. Stephen's blood pressure numbers are staying in the 30's. He is still swelling in his stomach area but it is softer. They are trying to figure out how to do a CT scan as Stephen can't tolerate the contrast and they can't do an MRI because he has metal in the breathing tube. They are checking for a blockage or some type of leakage inhis stomach/intestinal area. Stephen is still breathing a lot on his own with the ventilator. - Jeff

11:30AM Stephen had another good night. His blood pressure continues to stay higher averaging around 40. He is getting a CT scan this morning on his stomach area as it remains swollen. He continues to do a lot of breathing on his own though still hooked up to the ventilator. Please pray that he can get the breathing tube out and stabilize with his breathing and blood pressure. The risk is that he has to be intubated again, we hope this is not the case. - Jeff

9:15 PM Stephen is resting well. His blood pressure diastolic has been as high as 62 and we are all ecstatic about that. It has fallen back into the 30's right now, but Stephen is on pressure support which means he is doing the breathing. We are hoping he is getting past whatever made him sick and can get off the ventilator. His stomach area is softer and slightly smaller. He had activity (BM) which we are so thankful for as he really needs the relief. They are still pumping some fluids from his stomach and giving him Lasix. He is passing more fluids than he is taking in. His lungs are pretty much clear of fluid. Thank you again for all the prayers and support. Myra, Philip, and I really appreciate it. The extended family does as well. - Jeff

12:45PM Stephen's blood pressure has been much better throughout the night and all morning. His diastolic has been as high as 52 but has been averaging in the 30's. He isn't running a fever. He is still bloated as he has a lot of trapped air in his stomach and intestinal area. Please pray that we can all meet with the doctors next week and have good options and make good decisions. We are hoping Stephen can bounce back and make it without the ventilator as he possibly gets over whatever has made him so sick. He is doing a lot of his own breathing now as the ventilator will back off as he takes over. - Jeff

4:30PM The ENT doctors came in and have determined Stephen is not a candidate to have a tracheostomy. He has blood vessels that are too close to this area. This is a huge setback as this was a way for him to get the breathing tube out. The ICU doctors are talking and will let us know what if any options that they can come up with. Stephen's fever is gone. His diastolic has stayed in the 30's which is good. Other numbers are good as well. - Jeff

10:00AM Stephen's diastolic numbers are higher this morning ranging from 28-33. They put a cath back in to get his urine flow going again, which it is. Stephen is an "add on" today to get a Tracheostomy. We don't know what time it will be, but we are hopng they get to him so he can be on the path to healing from it. He will have to be sedated for seven days with the Trach, but at least the breathing tube comes out. - Jeff

9:00 PM Stephen has had another tough day. His blood pressure has been very low and the doctors are trying another medication to slow his heart rate and get his diastolic higher. It was extremely low this morning. His stomach area is very swollen as his heart isn't functioning correctly. The nurse told me that his legs were cool earlier in the day (I wasn't here, but Myra was) and now they are warmer. This means his blood is circulating better. He isn't running a fever anymore as well. I posted more pictures on the picture gallery tonight if you would like to see them. - Jeff

10:00 PM Stephen is resting well in his new air bed. He has had low blood pressure through out the night and today. His bottom number has been fluctuating from 20 to 40. They prefer for that number to stay in at least the 30-40 range. He received two more pints of blood to keep his pressure up. Stephen had a fever of 102 through the night, but it is lower now. Stephen's stomach was swelled and they had to drain fluid off his stomach. We truly believe God is working a miracle in Stephen and he is going to get better soon. Thank you to everybody for all the calls, comments, visits, food (many have asked and we will let you know as we will be doing this for a while and can only use and store a small amount of food at a time), and other support, etc. Myra, Philip, and I know there are many out there supporting us in prayer, thoughts, etc., many that we don't know about personally, but we feel the love and support. It will take Stephen time to recover from all this time in the bed. He will be receiving therapy for all this. After Stephen gets his tracheosotmy by Tuesday or Wednesday (hopefully) he may be sedated for up to seven more days. After this, he will start to come out of this and will slowly be getting back to the Stephen we all know and love. He will have us all laughing and feeling good. We will know he is really feeling better when he asks me to get him some pizza. - Jeff

Saturday, January 17, 2009

9:30PM Stephen had a restful day today. He is still under sedation. We have decided to move forward with doing a tracheostomy (same as tracheotomy) as this will be helpful to manage Stephen's breathing, it will help with his long term care, and it will allow the doctors to remove the breathing tube that is uncomfortable and puts Stephen at a higher risk. Unfortunately, because it is a holiday weekend, it will be at least Tuesday or Wednesday before we can do this. This procedure has it's own risks and it requires maintenance to make sure it stays clean. If Stephen has to stay on a ventilator for certain periods of time, it can be done through the trach. It is just the best thing for him right now. Please pray that once he recovers from this that there won't be any complications related to this procedure including not being able to eat or talk. Most patients are able to do these things after the procedure. Stephen's fever has gone down. They did have trouble with his bottom number on blood pressure a little while ago, but they adjusted his medicine and it is back up. He now has an air bed to help with the sores and to keep him comfortable while in bed. We saw him in the new bed and it looks like he is resting really well.

January 16, 2009 3:00

Stephen had a good night last night and has been resting well after his set back yesterday. His blood pressure and oxygen level are good. He is still sedated due to the breathing tube. He still needs his kidneys to function a little better. He is still running a slight fever. Stephen has some fluid and congestion in his lungs, but he is better. He has a sore on his right heal. Myra and I will be making a prayerful decision about Stephen having a tracheostomy to give him a safer way to breathe and be on a ventilator even part time if necessary. We hope this can be done Tuesday when they take out his breathing tube. This will eliminate them having to reinsert the breathing tube if Stephen needs help and he will no longer have to be sedated. He will also be able to communicate with us and get up and walk around so his body can start getting better. The doctors are very concerned about his airway and how difficult it is to get to it during an emergency. While the trach will be a minimal risk and a maintenance issue, the advantages that it offers in a safer airway and the ability for even us to manage his breathing far outweighs the risks that we see right now. Stephen will be needing therapy in his recovery and therefore will be in the hospital for several more weeks. - Jeff

January 15, 2009 6:00PM The doctors removed Stephen's breathing tube today around 10:00AM. Stephen was breathing on his own, but then his blood pressure went up and his breathing was "labored". Unfortunately they had to reinsert the breathing tube. He is stabilizing and resting well. Before the tube was removed, he was able to move around a little and he actually had the strength to try to sit up. Since they put the tube back in, they had to sedate him once again. Stephen still has fluid in his lungs and has some other issues right now. The doctors will try to remove the tube again on Tuesday. Probably in the morning. Stephen may have picked up some type of virus that caused this recent episode of sickness. He is on several antibiotics. Please pray that he will get strong enough to have this tube removed on Tuesday and his vitals will stay stable. When Stephen was diagnosed with "Sly Syndrome" while Myra was six months pregnant with him, I asked the Lord for a word to hold onto. He gave me Matthew 9:35. Myra and I are still holding onto it. To God be the glory - Jeff