The Legend of Thousand Hills Farm | |
No big newsThere isn't much news to report - I've held off blogging hoping to have some answers, but it doesn't look like we'll have any answers today.We don't know what's wrong with Noah. His cultures haven't grown anything out - so maybe it's a line infection but maybe it isn't. His other labs (white count, CRP, etc) indicate an infection, and he's still feverish and feeling awful. Nothing else is wrong that would account for the labs, fever, etc. - no ear infection, no cold or cough, etc. It's possible that the blood he received a few days ago was given by someone sick. The blood is screened for the big stuff, but it isn't possible to cover every possible illness, so it's possible that Noah "caught" something from the blood donor. He has been on two heavy-duty IV antibiotics since we got him admitted, so if he is dealing with something bacterial we should have it covered. The only other big symptom is apparent pain. When he was first starting to show signs of getting sick Sunday, Jeff went to change Noah's diaper and Noah had a fit. He was rolling and writhing as if his stomach or legs hurt. He's done the same thing since he's been here. The doctor has seen it happen, and she feels like the pain is in his lower abdomen as opposed to his legs or hips. He isn't having any other GI symptoms and his urine cultures are clear, so there isn't a clear cut explanation for the pain at this point. Noah is having periods of alert activity, but is VERY irritable when he's awake. It is extremely difficult to keep him content. He feels well enough not to sleep all of the time, but not really well enough to enjoy doing much of anything. He'll ask (scream) for something, then fall completely apart as soon as he gets what he thought he wanted. Now and then something will get his happy attention for a few minutes at a time. When his fever trends up, he falls back asleep or just lies in bed. He did sit on my lap and paint for a little while earlier, so Child Life is going to bring us more paints for tomorrow. Please pray specically for peace and comfort for Noah. I'm grieved that someone felt the need to comment and tell me that I made the wrong decision in having my dad go back home. This wasn't "my" decision, it was "our" decision,and it was the right decision. My dad is a brilliant man - a former Naval aviator - and if he thought it was a good idea to go ahead and come, we would not have stopped him. We all recognized that this visit wasn't going to work on a LOT of different levels, and while we are all disappointed, we all also realize that God's hand is in the timing. While we are obviously concerned about Noah, we are also very thankful for the care he is receiving. The staff here is wonderful and there are many people who truly love Noah. We also appreciate the phone calls and blog comments so much more than you can imagine. It can be very lonely here and it is so refreshing to hear a friendly voice or read encouraging comments. We are also thankful for a nice big corner room! I have more "thankful things" to share, but Noah is rolling around on my lap and I can't type anymore! :-) Blessings, Kate Very Sick AGAIN, being admitted AGAINWe are on our way to the hospital with Noah, who is being admitted. He's running a high fever with sudden onset and looks terrible. He seemed fine at church this morning.My dad, stepmom, and aunt were on their way from Florida to visit us. I had to call them when they were just 4 hours away and let them know they would need to turn back. Jeff's parents, who usually keep the boys, are in Florida on vacation. We were still at church when Noah crashed and a precious friend has taken the boys to their house for the duration of Noah's stay. The girls will be here. I want to kick and scream and throw something. I want to cry like all of my children are crying. I can't even tell you how much I was looking forward to seeing my family and spending time with my dad. He's fighting cancer and it's hard for him to get up to SC (and impossible for us to get to Pensacola.) I miss him. I know God is at work. I'm just not sure that right this particular minute I'm doing a good job of letting Him work in ME. OK, real time update. Sarah, who has been crying and despairing, just bounced past me singing a joyful little made-up tune . . . "I love God, God is my hope, God is my life,God is my strength, God is my heart, God is my God, God loves me, God is my joy . . . Noah is a miracle, Noah is God's, Don't go God - please kill those germs, God is my hope, God is the strength of my hope!" Message received. Attitude currently being adjusted. Thank you, Jesus. (and Sarah!) Out of the mouths of babes . . . . The car is packed and I need to go. Please pray. This looks like the kind of line infection that almost Noah his life a few weeks ago. Please ask others to pray. Jeff's cell - 864-337-3725 Blessings, Kate Blog Award I got awarded my first award.....from my wonderful friend Grace! Grace has been such a sweet friend to me, even though she lives very far away in cold Alaska! If you follow the link you can go and visit her blog and congratulate her on expecting their seventh baby! Thank you, Grace!
My First Award!!!I received my first award! Thank you Michelle!
AWARD RULES 1. Please put the logo on your blog. I would like to nominate the following ladies: Great Give Away!Check out this HUGE give away from Harvest House and Inpop records! Over $330 worth of stuff, plus daily prizes! Check it our here:http://www.titletrakkblogtours.blogspot.com/ Do you like to read?Check out some of these blogs!! Some of them have contests, but others have some great posts on history and other topics! Be sure to leave a comment for them!Trying to get home tonightNoah's transfusion went very smoothly, and while he was up and unhappy for about an hour last night, it wasn't nearly as difficult as the night before - thank you for your prayers! The doctors who ordered the kidney scan and brain MRI each feel that any benefit to the tests is FAR outweighed by the serious risks posed by the sedation, so Noah won't be getting either test done. While I would have loved to have had the information that the tests could have provided, I am very, very relieved that Noah won't need to be sedated. The nurses are starting his IVIG which will take a couple of hours. If everything goes according to plan, he will get an echocardiogram after the IVIG then be able to go home tonight once his TPN is finished. His TPN usually runs for 14 hours starting at about 8 - 9 PM, but it didn't get started until 2:00 this morning because of the transfusion. It's being stopped for the IVIG and will be restarted when the IVIG is finished. There are a lot of yucky bugs up here right now, and Jeff and I are both relieved to be heading home before Noah could catch anything! I need to run and give a hand with Noah. I'll try to update tomorrow. Blessings, Kate MenuWednesday: Vegetable soup, pumpkin bread, homemade breadThursday: Baked potatoes, salad Friday: Crockpot beef barley soup, bread Saturday: Leftover soup, Pumpkin muffins Sunday: Black beans and rice, salad Monday: Beef stew, bread Tuesday: Spanish rice with cooked chicken added, salad
For breakfast the last couple weeks have either been oatmeal, peanut butter toast or sometimes eggs. I think I need to bake some quick breads to give them something else! Lunch is leftovers or PB and J sandwiches lately! I want to try this recipe I found called Pumpkin Apple Streusel Muffins, doesn't that sound good?
Apple pie fillingI had a busy day today! The boys did alot of their school last night so they could go and work for my sister today.They cleaned out cupboards, scrubbed bathtubs and other things like that! Anyhow, I had to take Tony to the doctor to originally remove the staples, but after I told them how it was bleeding on Sunday (a wrestling match caused a problem), they wanted to have a look, but they were not sure what they would do. I went to the doctor and got there on time, to find they were behind schedule so we went down to a toy store for a few minutes and came back. They elected to leave them in until Friday, when I have to go back to remove them. "sigh" Now to keep him still until then, no jumping, running, climbing etc...... yeah right! Spinning our wheelsNoah got admitted yesterday with only a little bit of difficulty - there had been a communication breakdown somewhere and no one seemed to know he was coming. That was resolved pretty quickly and Noah got settled into room 5519. We went through the whole admit process, but the doctors decided not to do his transfusion until surgery looked at Noah's broviac and gave the green light. We got the green light, but it took several hours . . . then the blood bank took forever to send up the blood . . . finally it was time to start his TPN and we no longer had time for a transfusion yesterday.We went to Plan B which was to get his brain MRI today ASAP followed by the transfusion. I got Noah down to MRI and after a lot of careful consideration the intensivist decided he wasn't comfortable sedating Noah. He said that he felt there was a high likelihood of problems and that it would be awful to have a child looking as good as Noah feels now end up in PICU because of sedation complications. I've got to admit that I was in NO hurry to see him sedated after hearing that! Of course, Noah is also slated for sedation tomorrow for the kidney scan. The intensivist decided to talk to neurology and nephrology to find out how badly they want these tests. If the test results will help them refine/find/improve treatment, then the intesivist will sedate in spite of the risks - if the doctors want the tests just to get information that they won't ACT on, then he won't sedate. Another possibility (also not without big risks) is to go ahead and intubate Noah and put him totally under general for the tests. We got back up the room and found out that there was a "hold" on the transfusion for some reason - probably something having to do with wondering when he would be back from the MRI. Noah's nurse has been calling various doctors trying to get orders to do the transfusion, but apparently no one knows who put the hold on it - so no one was willing to give the go ahead. A few minutes ago the nurse said that he thought it was all worked out, so we should be transfusing soon! It takes 10 hours, and it's 2:30 now, so this will be a late night by the time we get TPN hooked up. This isn't a criticism, and we are very pleased with his care. It's just that the communication can get tricky when there are so many specialists involved. Still ahead for Noah: transfusion, IVIG, echocardiogram, possible kidney scan, possible MRI. It looks like we may be here a few days longer! Please pray specifically for wisdom regarding these tests. I'm uncomfortable with the sedation, but don't want Noah to miss a truly needful test. Please also pray that he will sleep well tonight. Last night he hit a 3 hour coughing jag and would doze off, cough, wake up, cry for me to hold him, doze off, repeat - about every 2 minutes. I was sleeping in the cot nursing Mary Faith and poor Noah was desperateenough for me that he kept cramming himself into that cot with us (leaving the entire hospital bed to Jeff!!). After 3 hours of this he was able to get a dose of benadryl. I climbed into the hospital bed with him until he fell asleep and I could sneak out and back into the cot with Mary Faithl. I'm tired and achy from wrestling a miserable toddler while juggling a nursing baby all in a tiny cot and I could REALLY use a good sleep tonight! :-) He'll get benadryl in a few minutes here for the transfusion, then again in 6 more hours (8:30 or 9 tonight) and I'm hoping that second dose will knock him out for the night so we can all rest better. The nurse just came for Noah, so I need to head back to our room. Thank you for your prayers! Blessings, Kate { Last Page } { Page 3 of 5 } { Next Page } |
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