Everyone feels like Jonathan is working much harder to breathe today. They just switched him from a nose cpap mask to a full mask that covers his mouth as well. The doctors were pretty frank that they are very concerned about him and think it's likely he will need to be intubated and on a ventilator. Continue to pray with us that his breathing improves.
They're also trying again to figure out the source of the lingering fever. He did spike to 104 overnight. They're going to run a viral panel (an admitted needle in a haystack search) and add an additional antibiotic to the broad spectrum ones he's on. They're also worried about pneumonia. His immune system is getting stronger but he's just still very sick. It does appear that his intestines are starting to heal so that's a praise. He's so strong and such a fighter. We praise God for the strength He gives all of us.
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Jeff and Jonathan were both troopers yesterday. The ng tube replacement went pretty well. They're keeping suction on the new ng tube to try to keep Jonathan's stomach from being so upset. Praise God Jonathan adjusted to the cpap machine yesterday. It made a huge difference for his breathing rate and oxygen saturation. His nurse admitted last night she was certain he'd need a ventilator so we thank God we've avoided that intervention so far. His belly is still very painful and distended so we're just in the waiting game for his body to keep healing the damage the c diff infection did. He hasn't had any high fever spikes in the last day or so. He's still very uncomfortable but it feels like we're closer to him feeling better.
On the travel front, my little sister made it home safely on Friday. My dear friend Jenny went home on Saturday and my older sister Elizabeth made it in this morning for her week with Clara. Jeff's brother Duane came in yesterday for a quick visit and leaves tonight. We are so very grateful for our family and friends who continue to show their love in praying and coming to help. Continue to pray for Jonathan's healing and for us to get out of ICU. Pray for wisdom for his doctors in figuring out the timing of his next chemo cycle. It was supposed to start this Thursday but that's not likely. It's been a very tough week but it will hopefully get better soon. To God be the glory. Authored by Jeff
We have had a few more fever spikes in the last 24 hours, but they have only been up in the 101 to 102 range. He still has a lot of pain, and they are administering morphine for that. The poor kid has been shooting through IV's faster than diapers. It seems like we need to change one daily. We pulled one from his wrist yesterday, and today the backup in his leg stopped working properly, so the morphine was going into his foot instead of his circulatory system. He got a new IV in his other foot an hour or so ago, and they just added a third IV in his hand. The IV pokes are no fun. But he's not done yet. He is now getting platelets in preparation for changes in his NG tube, since they don't want to cause any nose bleeds. After the platelets, the old NG tube is coming out, and a new kind of tube is going in that will be used to get the gas out of his belly. The X-rays from 3am this morning look like he has a balloon in his belly. The docs are hoping that by relieving this pressure we can reduce the burden on his respiratory system, which remains the primary concern as we ride through this inflammation in his abdomen. We're walking a fine line where he is currently getting about as much "passive" assist as it possible, but his oxygen saturation levels are not consistently as high as they would like. He does have a small amount of fluid in his right lung today, and he sounds "wet" when he breathes. If we cannot turn this around, he may need to be intubated and put on a respirator. We REALLY, REALLY, REALLY want to avoid that. His ANC count is up to 250 today, so he's definitely making the white cells and they should be going after the bugs. As Marianne may have said that can cause the inflammation to increase before it decreases. The inflammation in his abdomen has continued to worsen, and he has been retaining some fluid as well. Once the inflammation abates he should respond to some meds to help him drain the fluid. Another potential contributor to his respiratory issues is simply that he has been in a hospital bed for all but 6 days since we were admitted on January 9th. All these procedures are going to be a rough ride for Jonathan (and daddy). At least we checked off the 2nd IV poke of the day while I was working on this post. That should be in for pokes. The next bit of trauma will be the NG tubes, and we still have a dysfunctional IV to remove from one of his feet. Prayers continue to be appreciated as always! You know what we need. Soli Deo Gloria! Jonathan's temp has stayed below 100 since mid-day yesterday. Praise the Lord! He does have some white blood cells now, but what the oncologists warned about seems to be happening. His pain level is increasing because as your immune system fights infection it causes inflammation. His poor belly was already significantly distended because of how inflamed his intestines are from the c diff infection. So the immune response is actually making that worse. They've put him on morphine and are increasing the dose because he's just in so much pain.
So while he's still miserable and suffering from vomit and diarrhea, we know that in the next day or two he should finally start healing and feeling better. ICU docs still don't like his breathing rate and tried a cpap machine overnight but it didn't help. The theory was that he was breathing fast to cool off from fever but now they think he's breathing very shallow and fast to avoid his diaphragm from pushing too hard on his painful, swollen belly. Continue to pray for healing and recovery for him. Pray his white blood cells grow quickly and relieve his suffering. To God be the glory! So the ct scan showed lots of inflammation. Basically if it has a mucus membrane its inflamed and unhappy. The oncologists said it's exactly what they expected with a c diff infection, high fever, and no white cells. So really no new diagnostic information from that test but it didn't show an undetected fungal infection or other serious problem so that's a praise.
Jonathan did feel a lot more uncomfortable overnight and this morning. The docs aren't quite sure the source but are going to try a few things. His immune system is showing more signs of waking up so they're hopeful that maybe tomorrow or Saturday he will start feeling better. Continue to pray for his healing and our endurance. It's frustrating to stand in the hallway during rounds and see 6-8 doctors all shrugging their shoulders and saying "maybe try this?" But, God is in control and that's who we should look to for our hope and peace. Pray we keep our hearts centered on that truth and not get bogged down in all the noise. To God be the glory! Praise God, we saw some improvements today! Our highest temp was around 102 and he actually sat a normal temp for 4-5 hours. His heart rate has dropped to a lower rate but his breathing is still pretty rapid. His blood test this morning did show some monocytes which means his immune system is starting to come back. His oncologists think he should start feeling much better in the next day or two. He was pretty grumpy today and kept asking about coming home---actually a good sign that he has the energy to complain. They did a ct scan a few hours ago and we're still waiting to hear the results from that. They were looking for other signs of infection since blood tests have been negative.
God wrapped his arms around our family today. One of my dearest friends felt burdened to be here and drove in from Kansas to sit with me in ICU. She helped take care of Jonathan the week after he was born and she lovingly cared for both of us today. It was an immense help having her sit with me. Also, a pastor from our home church in Texas flew in to sit with us and pray with us. We know hundreds of people from FBC Grapevine are praying for us and it was amazing to sit and pray with Brian and feel the love and prayers of that whole church with him. Thank you Jenny Lichte and Brian Anderson. You were Christ in flesh for me today. Continue to pray for us. Pray Jonathan's nausea abates. Pray his body makes white blood cells in abundance and his fever to break. Pray for him to recover quickly so we can have a few days at home before his next chemo cycle. Pray for safe travels for Doris and Calvin as they start the long drive back to Wisconsin tomorrow. Pray for my sister Elizabeth to have safe travels in this weekend. Pray for my mom and her family as they grieve the unexpected death of her brother earlier this week. To God be the glory! Authored by Jeff
The last 24 hours basically saw the same symptoms. I think the average heart rate has been slightly less severe. I only saw a rate at or above 200 once last night when we had to change his bedding and wipe him down due to some nausea and a pull-up blow out (thank you, c-diff, or perhaps all the antibiotics, no-one really knows). Once we stopped messing with him he dropped back down into the 180s. We still had a 105 degree fever spike between medication doses. Right now he is at 155 with a respiratory rate of 54, but that jumps around a lot. On a positive note, although his vitals may not be reflecting it, Jonathan was more interactive last night, and was both looking and feeling better. He started drinking more out of his water cup, and was asking for it a lot. I think he even kept some of it down! He's a fighter and keeps on trying. He told me his mouth doesn't hurt anymore, so that is another thing to praise God for! He wants a strawberry slush from Sonic, and we'll get him one as soon as he is cleared to have it. Thanks again for all the prayers and support! We're clearly in the middle of a rough patch inside the larger rough patch. We're praying he will get those white counts climbing soon and fight off off whatever mysterious virus is eating him. Marianne got some rest last night and is back in the saddle here at the hospital today. I'm going to jump into the family shower and head to the office. Soli Deo Gloria! Thank you all for your prayers, unfortunately there hasn't really been any improvement today for Jonathan. They gave him some platelet transfusions so they could give him an ibuprofen dose. It dropped his fever nicely but after it wore off, his fever rebounded back up to the 104 range. Because ibuprofen is a blood thinner, its dangerous to give it to someone with low platelets so its not sustainable to keep giving him platelet transfusions just to give him ibuprofen. His vitals continue to be in a very concerning range. His heart rate is high (180-200, normal is closer to 100), and his breathing rate is high (60-80, normal is 20). HIs body is just worn out trying to deal with the persistent fever. He tests positive for c diff but the doctors wonder if that's really the source of the fever. He's been on targeted antibiotics for that long enough for the c diff to respond. They've given him other medications today to get his electrolytes back in healthier ranges but that hasn't seemed to have made any difference in how he's doing. They keep running cultures to see if they can discover another infection and they've all come back negative. He sleeps a lot but moans in his sleep, his body shakes with fever, and he continues to have vomiting and diarrhea.
Please continue to pray for healing. He still has no measurable white blood cells so they're dumping different antibiotics and anti-fungals into his body to try to fight whatever this is. I was extremely worn out today so I left the hospital around lunchtime to come home for a nap. Jeff will spend the night tonight and I'll be back early in the morning. Candidly, we're pretty frightened for him. We trust that God the healer can turn this around but things are scary. Continue to pray for his healing and our endurance. Please continue to pray for healing for Jonathan. He's still very sick. His temp is staying between 102-104 despite Tylenol every 4 hours. He's thrown up 6 times in the last 24 hours. They've re-started the ng tube feeds but have only gotten 250ml in (most of which he's thrown up). They're doing a little IV nutrition. He's getting another blood transfusion this morning. His heart rate has improved, but it's still higher than they like it. He's on as much oxygen as they can give us outside the ICU. His nurse this morning is likely calling for another ICU consult to see if there is anything else to do to help him.
Pray for strength. Pray his fever breaks. Pray the antibiotics kill the c diff. Pray for his body to make white cells. To God be the glory. |
AuthorOur family has been through non-Hodgkin's lymphoma with our 4 year old and throughout it all we felt God's presence. My life verse is Romans 8:28. "God works all things together for good..." Archives
February 2017
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