A culture last night came back positive for parainfluenza. It's a virus that often causes croup. They don't have a specific treatment for it. They're continuing the broad spectrum antibiotics in case something else is going on. This virus usually causes high fever for 3-4 days. They think we're on day 4 so hopefully we will see improvement soon.
Jonathan did stay out of ICU overnight but they still aren't happy with his vitals so it's still a possibility today. Neither of us got much sleep. They had to hold his morphine a lot to administer other medications so he was in a lot of pain. He did get a unit of platelets this morning and we're inching closer to needing another blood transfusion. His white counts haven't risen at all so we're still waiting on that to recover. I keep reminding myself that how badly his white counts are doing also means we're killing lots of cancer too. Lymphoma is a cancer of a type of white blood cell. Continue to pray for healing and restoration. God bless.
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Please continue to pray for Jonathan. It's been a roller coaster day. He keeps spiking high fevers which cause his other vitals to move into troublesome values. The ICU team evaluated him this afternoon. They agree with everything being done for him but he's teetering on the bubble of needing the one on one care the ICU can provide. We might end up there later tonight. He just really needs to start making white blood cells to beat this unknown infection and for his mouth/esophagus/intestinal sores to heal.
Pray for the fevers to abate. Pray for him to stop scratching the rash that covers much of his torso. They think it's from the chemo but he's starting to cut his skin with the scratching. Pray for his white blood cell counts to rebound. Pray for the IV nutrition to sustain him. We can't get him to take anything by mouth. Pray for Jeff and I to rest in the peace God wants to provide us. We know this will pass but there are scary moments. Pray for my sister Doris to have safe travels. She's driving from Wisconsin Sunday/Monday and snow is in the forecast. To God be the glory. Authored by Jeff
Jonathan's mouth sores (mucositis) are worse this morning, and he continues to spike high fevers. They have ordered IV tylenol for the fever, as they are no longer going to expect him to take anything by mouth. He clearly isn't feeling well, lots of moaning as he sleeps, which is pretty much all the time. They hooked him up to IV nutrition last night since he really hasn't eaten anything substantial in four days. No NG tube for food because it will just aggravate his mucositis and cause more discomfort. They have ordered a continual morphine drip for pain due to his mouth sores. There is some concern this morning that he appears to be working harder to breathe. Not sure if this is due to fever and pain, so we are trying to get those things under control and see how he does. Jonathan's getting a lot of attention this morning, from charge nurse to MD. Pray for speedy recovery from horrible discomfort, fevers, and labored breathing. Pray for peace for us as well. Thank you for your prayers! Jonathan is still running fever. He's at 101 even on full doses of Tylenol. He was 103 last night. I got his lab reports this morning and his white count continues to fall. We had hoped he'd hit bottom and would start rising. For the medically inclined, his ANC has to be 100 to leave. Yesterday it was 90. Today it's 10.
The good news is that he's finally cleared enough of the methotrexate chemo from his bloodstream. They will back off how many fluids they're pushing which will make Jonathan more comfortable. Pray for him to beat this infection. Pray for immune system to come back. Pray for him to eat or drink. Pray for us to get home. Pray for our friend Jan who has been watching Clara to have a safe trip home tomorrow. Pray for my sister Doris and her 3 year old son Calvin to have safe travels on Sunday and Monday as they drive here from Wisconsin to help out the whole month of February. May God be glorified even in this! Jonathan spiked a high fever last night. They ran labs and he has hardly any white blood cells. That's expected at this stage of treatment but it means our hospital stay is extended again. He can't leave until he's 24 hours without a fever and has more white blood cells. So we're probably here a few more days.
Anyone who is local, we are requesting no visitors for now. We just can't risk the germ exposure. Even staff have to put on gowns, masks and gloves just to enter the room. I was allowed back in today since I've been on antibiotics for 24 hours for my pink eye. Please pray this fever breaks quickly. Pray for nutrition. Pray for mouth sores to heal. Thank you! We know God is with us. If we'd been discharged earlier this week we would've been coming back for this fever. Authored by Jeff
Latest methotrexate level from the 5pm labs is 0.20, the exit criteria remains at 0.15. He was at 0.25 this morning. Hopefully tomorrow we can shed the remaining 0.05. They will probably draw labs again at 5 or 6am. Jonathan finally took some pain meds this afternoon to help with his mouth sores. This got him feeling good enough to drink some strawberry milkshake and eat some M&Ms. He just doesn't have his appetite back yet, and the mucositis impacts his entire GI tract. We spent some time out of bed watching cars and busses drive by the hospital, and there is construction going on across the street that he likes to watch. He got tired after awhile and is now back in bed taking a nap. This kid has been through so much. Don't know what to say folks...cancer sucks. I think Marianne summarized well what we need to be praying for. Additionally, pray that Marianne got a good recharge staying home with Clara today. It's a full time job staying at the hospital; there really isn't much time for rest. Please pray that the nighttime oral meds go quickly, as that is always a struggle that results in significant loss of sleep. Soli Deo Gloria! Jonathan still didn't make the blood count they need him to for release. At this point it's just a waiting game. They will check again at 5pm and will send him home tonight if he hits it but with how slowly it's been dropping they expect to keep him overnight again.
Unfortunately he has developed mouth sores. They gave him some pain medication and a "mouthwash" that is supposed to numb his mouth and promote healing. You can see all the foods Jeff is trying to tempt him with. I woke up this morning with pink eye and they won't let me in the cancer ward for 24 hours. It was very hard for me to be turned away and not see him today. Jeff is taking good care of him and Clara is enjoying having mom home for a full day and night. Pray no one else gets pink eye. Pray Jonathan's mouth sores heal. Pray Jonathan can eat and drink enough despite the pain. Pray for us to all be home again soon. God bless! Thank you all for your prayers! It was a long day but Jonathan did well overall. He tolerated the sedation well and they were able to do all the "maintenance" they wanted to. He was actually excited about the blood transfusion. He told me that they keep taking his blood so he was glad they were giving it back. Such a clever boy!
They don't quite understand why the chemo is taking so long to clear his bloodstream. They did a chest x-ray tonight to make sure there wasn't still some fluid hanging out in his chest that could be holding onto pockets of chemo. It looked clear. The doctors are going to meet in the morning and try to come up with a new plan for when he will be allowed to be discharged. They're doing everything they know how to do to help him flush the chemo out (tons of fluids and a medication at the highest dose they're comfortable with). They checked his mouth thoroughly and didn't see any sores but went ahead and ordered for us a "mouthwash" that will help numb and heal any sores that might pop up. We're understandably disappointed that we still don't have him home but we want him safe to bring home. He has an unexplained rash on his back, face, and belly that they're watching as well. It doesn't appear to be an infection, but they all just kind of shrug their shoulders about its source. He doesn't seem to be itching it so that's good. Please pray that he can get some good nutrition. He's had an incredibly poor appetite the last couple of days and is steadily losing weight. He's below what's normal for him. They expected the steroids to give him a hearty appetite but that hasn't really happened. Please continue to pray that we can all be together at home. We do regular video chats so Jonathan can talk to Clara. Its precious to behold. They usually both end up cackling. They really crack each other up. To God be the glory! Please pray the next few hours go well for Jonathan. We're headed for the spinal chemo at 11:30. While he's sedated they're going to put in an IV for a blood transfusion, change out the needle in his port, and change the catheter in his arm we use to inject the blood thinner.
His blood test shows his remaining chemo level is still too high. Because its lingering he's at greater risk for mouth sores. Pray we avoid those. They see signs of them on his lips. He clamped his mouth shut and refused them a look during rounds. They will peek while he's sedated. If they are too painful for him to drink and eat enough we will have to go back inpatient. They will check his chemo level again this afternoon. There's still a chance we might go home but its dropping so slowly that we're planning to be here another night. Pray I'm wrong on that! Thanks for your prayers! I'm thankful they can knock out so many painful things while he sleeps. Unfortunately we won't be discharged today. They needed the trace of chemo in his blood to hit a certain level and we're just a tiny bit too high. They will keep pushing fluids and hope to get him to that level overnight. He's scheduled for another lumbar puncture and chemo in the morning. He also needs a blood transfusion. If all that can happen tomorrow then we can leave.
Jonathan is feeling pretty poorly today. Despite a lot of encouragement, he hasn't eaten hardly anything and has slept a lot. It's not unexpected but hoping he perks up soon. Thank you for your prayers! Just pray for us to get past this hump and home. Jonathan got upset after his last oral medication dose and cried and said he missed his baby sister. I know getting him home will lift his spirits and all of ours. |
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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