Difficult News

We found out yesterday that Joey has a staph infection in his lungs which is giving him trouble with a ton of mucous clogging up his endotrachial tube making it tough from him to breathe. Also, we don't have a concrete diagnosis back from the muscle biopsy yet, but the neurologist gave us a preliminary report that Joey may have spinal muscle atrophy. This genetic disorder causes programed cell death of the spinal motor neurons meaning Joey won't ever be able to move his arms and legs and he'll never be able to breathe without the vent. These kids usually die within the first two years of life and sooner if the case is more severe, which Joey's is since he's already on the vent. Again, we're waiting on a blood test to confirm the diagnosis with 99% accuracy, but we need a miracle now more than ever, so everyone PLEASE, PLEASE pray hard. Thank-you.

Good Day

Joey had a good day yesterday. His muscle biopsy went well, the surgeon said that his muscles were underdeveloped, but we expected that since he's not moving much, but they got the sample they needed, so that's good news. Joey did not get cold again like he did last time he went downstairs for a procedure, so that's good news as well. Joey had an eye exam yesterday for retinopathy of prematurity. The blood vessels of the eye (for the retina) don't fully develop until term birth, so premature babies can sometimes have difficulty getting those vessels the rest of the way developed correctly. So far, Joey is fine, the vessels are forming normally, but they are still immature, so he'll be retested in a couple of weeks. Joey had his physical therapy eval yesterday as well. The therapist (actually taught a few of my grad school classes) said that he had really low muscle tone (we knew that), but she did say that he was responding correctly mentally, so it's important that anyone who comes to visit his be sure to talk to him like you would any other baby. She said that when a baby isn't moving like he should, people tend to think the mind isn't moving either, but she said that Joey is "in there" so be sure to talk to him. I've started reading The Hobbit to him, so I'm talking to him a bunch now too. Also, Joey does not have RSV (nasty respiratory infection) and at the time he doesn't have pneumonia or anything else, but they're trying to grow something in a dish to see if he's coming down with something or if he just had a ton of snot the last few days. Joey was really awake yesterday when I was there in the afternoon. He wasn't doing any new movements, but the ones he has been doing, he was doing a whole bunch yesterday, so that was encouraging to me. Oh, I almost forgot, when the eye doctor was doing his exam, he had to hold Joey's eyes open and have a pretty good light on them, so I checked the color of Joey's eyes and right now, they're gray. I don't know if they started blue and they're working their way darker to brown, or if they started gray or what they're doing, but right now, they're gray. Thanks again for all the prayers and love that everyone has shown us and especially Joey. I keep reminding myself that we keep getting lots of good news and that Joey is improving, but it's just not as fast as I'd like, so thanks so much for the prayers and PLEASE keep praying for Joey.

One Month Old

Joey is one month old today. Happy birthday to Joey!! As a birthday present, he's getting a muscle biopsy this morning (they need a 1cm square chunk...yikes). Also, Joey had a little bit of a rough afternoon yesterday, he had to be extubated and reintubated around 4:30 because he was getting too gunky in his lungs. They also swabbed him for infections like pneumonia and RSV so we're hoping all of those come back negative. He just seemed to need a little more time to adjust to the changes made in his respiratory treatments and he let us know like he always does, so we're just trying to give him the time he needs. Keep praying for Joey to move his arms and legs like he should, to be able to breathe on his own without the vent, and to come home. Thanks again for the prayers and please keep it up.

A Quart Low

Joey was a little anemic yesterday, so they gave him some blood. We were told that this would probably happen before I even left the hospital because he's not making red blood cells on his own yet (he's still two weeks early remember) and the doctors keep taking blood out of him for tests, so Joey's needing some blood was expected. Most of the blood tests are normal including the one for hemaphelia (uncontrolled bleeding) which is a problem with boys sometimes, but there are a few of the less common ones not back yet, so the docs want to wait on the muscle biopsy until those last few tests are back. They don't anticipate there being anything wrong with the tests, but if Joey would have a clotting problem and have trouble with the biopsy, the docs would be kicking themselves for not waiting, so better safe than sorry at this point. They're thinking the muscle biopsy will be either Tuesday or Wednesday now. I'm still praying for God's miracle of healing, so I want the muscle biopsy tests to come back fine and I'm praying that Joey will start moving again on his own and get off the vent by himself. He's on "full" feeding now of 23mL/hour which is more than what we thought full feeding would be for him because he's such a chunker now, so that's why the posts have said "full" feeding a couple of times because Joey keeps changing it. Also, he's lost a little weight the last few days which the doctor believes is due to him losing some of that fluid in his abdomen rather than decreased nutrition, so that's good news. Thanks again for all the prayers and please keep praying especially for the movement thing.

Four Weeks Old

Joey was 4 weeks old yesterday and he's still hangin' out. His feedings are up to 20mL/hour which was originally considered full feeding for him, but he's getting bigger, so they're going to re-figure and probably up him some more today. The doctor is considering taking down his vent settings some more to see how he handles it (if he does well, the next step would be to try to extubate - take the tube out). Joey is getting a muscle biopsy on Monday (hopefully) to determine why he isn't moving much. All of the blood tests that we have back are fine. That's all we know. Thanks for the prayers and please continue to pray for Joey.

Resting

Joey is 27 days old today and he's just resting. He had that really big day on Wednesday with the MRI, the CT scan, replacing his NJ (feeding) tube, and on top of all that, he got pretty cold on Wednesday, so now he's just resting. His temperature is back up to normal and we still don't know anything concrete about the scans yet. We're waiting for the neurologist to get back with us on what the scans tell him. The neonatologist says that depending on what the neurologist says, but we're probably looking at a muscle biopsy to find out why he's not moving yet. The doctor feels that his decreased movement is probably what's keeping him on the vent, so that's where we need your prayers right now. Joey needs to move around more on his own and get stronger so he can breathe without the vent. Thanks for the prayers and please keep praying for Joey.

First Thanksgiving

Today is Joey's first Thanksgiving. It's appropriate that he is on full feeding again today after the MRI and CT scans yesterday. He'll be resting and eating most of the day. We don't have any concrete information back yet from the scans, but the doctor said the CT scan of his abdomen didn't show anything obviously wrong or causing the ascites. Happy Thanksgiving everyone and thank you for continuing to pray for Joey.

Back in the NICU

Joey had his MRI at the main campus this morning and I just spoke with his nurse and he is back in his room at the NICU resting comfortably. No results yet. The doctor usually reads the MRI in the afternoon, so we should have some results later in the day, but this is awfully close to the holiday, so whether or not we get results today could be questionable. His doctor talked about a possible CT scan of his abdomen this afternoon/evening, but no confirmation on that yet either. Joey was taken off his TPN (last supplemental feeding) yesterday, so the only thing he's eating is milk, so that's good news. He's up to full feeds now, they just have to wait to see how he handles it for a few days, then I assume they will attempt to switch to bolus feeds. All of this is of course dependent on the results of the MRI and CT scan. Again, thanks for all your prayers for Joey and Happy Thanksgiving in case I don't get a post up tomorrow. Thanks again and please keep praying for Joey.

MRI tomorrow

Joey has an MRI of his head and neck scheduled for tomorrow morning. One of the nurses that we really like and that has had him a lot is going with him, so that sets our mind at ease since we can't go with him ourselves. Please pray for Joey at about 6:00am Wednesday and a little before and after to cover the transport over to the main campus and back. Other than that, there's not too much to report. Joey has progressed to 17mL/hour on his feedings and will likely go to 19mL/hour today. He's tolerating it well and we hope to be at full feeding tomorrow. Please continue to pray for his fluid, his lungs, his feedings, and his movement. Thanks so much.

Just hangin' out

Joey is 23 days old today and is pretty much just hanging out right now. His feedings are up to 15mL/hour and will likely go up to 17mL/hour today. He's off the lipids (supplemental feeding) and will likely come of the TPN (other supplemental feeding) in the next couple of days. He's doing well with his breathing treatments and he's not needing suctioned as often. The nurse told me last night that the respiratory therapist finished his breathing treatment and Joey was sucking on his vent tube, so she put his fingers in his mouth and he was going to town on them. She said it was really cute and wanted us to know. Joey is just so stinkin' adorable and I want to bring him home so badly, but I want him healthy and safe to be brought home. He just needs to speed it up some for me. :) Please continue to pray for Joey to continue doing well with his feeding, to get the fluid off his abdomen, to breathe on his own, and to get his arms and legs moving more. Thanks so much for the prayers.

3 weeks old

Joey is 3 weeks old today. He has his feedings up to 13mL per hour and if he continues to progress the way he's been, he'll be up to full feedings on Wednesday. The lipids that he's been getting were turned off today and the TPN (nutrition thru IV) will be off by Wednesday as well. Then Joey will be getting all his food though the tube in his nose going to his belly. No more artificial food for Joey. :) He will only have the lasix going through his central line by Wednesday as well, so there will be nothing continuously hooked up to his central line anymore. He is still on very low vent settings and seems to be resting comfortably most of the time. We're still praying that he continues to improve, that he starts moving his arms and legs more, that the fluid in his abdomen goes down, and that he breathes on his own without the vent. Thanks so much for continuing to keep Joey in your thoughts and prayers.

Sleeping

Joey is 20 days old today (3 weeks tomorrow) and he really is doing well. I see him everyday, so it's nice to hear the nurses and family tell me that he's doing better, it seems so slow to me. Mom was in yesterday for the first time in a couple of days and she said that he really looked like he was sleeping rather than being drugged. He is completely off his sedative (no extra doses) since 4:00 yesterday morning. He hasn't needed that many break through doses thus far, he's just been sleeping it off. He's got one of his Precious Moments outfits on today and he has a snowy bear/penguin outfit for tomorrow. He's just too adorable in his little sleeper outfits. His feedings went up to 9mL/hour yesterday and he is eliminating the feeding the way he should, so the plan is to go up to 11mL/hour today. If he goes up by 2mL every day, he should be up to full feedings by the middle of next week. (Woo-Hoo!). Again, Joey is doing well, but PLEASE keep praying. Thanks.

Who's the man?

Big boy crib

Joey was moved out of the warmer into a big boy crib yesterday. He has on clothes now, they have to be snap front because he can't pull anything over his head yet due to the vent. I have a picture that Mike will get on the blog tomorrow of Joey with clothes on in his big boy crib. Joey's feedings have gone up to 7mL per hour up from 3mL where he started and the plan is to get him up to 9mL an hour today. He needs to get up to 20-25mL/hour to be on full feeds, then he needs to get from continuous back to bolus feeds. (he needs to take ~3hours worth of food at once and then have nothing for 3hours instead of the continuous drip he's been getting through the tube) The sedative came off completely yesterday (the drip anyway, he still gets break through doses when he gets really upset), and the nurses are watching for him to go through withdraw from the drug. The only thing he gets through his new line now are supplemental feedings, lasix, and the occasional sedative. Also, he moved his feet yesterday. I thought I saw him move his left leg on Monday, but I wasn't sure, so I didn't say anything, then I thought I saw him move the same leg again on Tuesday, so I mentioned it to the nurse. Then the night nurse saw him pick up his left leg and move it twice and the day nurse saw it again, then when I got there, the nurse and I saw him move (dorsiflex) both ankles. This is a good thing since the doctor has been concerned about Joey's lack of movement. Thanks so much for the thoughts and prayers and keep praying everyone, because it's working.

Central line

Joey had a central line placed yesterday and he's doing well with that. Both the lines in his belly button are out now, so that can be healing up. He's still on very low vent settings and the doctor tried to make them even lower yesterday, but Joey let us know that he wasn't quite ready for that pretty immediately. He's getting somewhat bossy about what he wants. :) His sedative is down some more, but not quite off yet and his feedings have increased from 3mL/hour to 5mL/hour. That's not much yet, but it's better than it was. I got to hold Joey again on Monday for about 40 minutes which was awesome and he had no lung issues this time. :) Thanks again for all the prayers and please keep praying for Joey to get the fluid in his abdomen off, be able to breath without the vent, get up to full feeds, and move his arms and legs around more now that his sedative is coming down. Thanks again.

Joey on his belly

Joey is 16 days old today and yesterday was the first day he got to sleep some on his stomach. One of the nurses told us that being on his stomach could help Joey with digestion and with getting some of the weight of the fluid off of his back and anything else it might be squishing. He seemed really comfortable on his tummy and his numbers were all good. The doctor dropped his vent rate down to 10 which is less than grown adults breath per minute, so Joey is doing most of his breathing on his own, the vent just helps him out now and then. Again, please keep praying for Joey. Thanks.

Thanks again

Thanks again for all the love, prayers, and support we've received over the last two weeks. We are so blessed to have such caring family and friends. Joey is on so many church and individual prayer lists that we are joyfully overwhelmed. Thanks so much to everyone. Joey is 15 days old today and is pretty much just hanging out right now. The docs haven't changed his settings or meds in a couple of days because he goes through a cycle of small improvements then he needs a couple of days to settle, so that's what Joey is doing right now. The plan is to attempt to ween him off of his sedative some more next week and hopefully increase his feedings. To sum up, we need the fluid on his abdomen to be reabsorbed and eliminated, we need his lungs to function on their own (he's so close), and we need him eating a little better (he's only getting 3mL per hour right now). Thanks again for keeping us and Joey especially in your prayers.

Holding Joey

As you can see from the picture, I got to hold Joey for the first time yesterday. I was pretty happy. Joey is now 2 weeks old today. He is still on the vent on a pretty low setting, but the fluid in his abdomen is preventing him from coming off the vent right now. They have him on some medication to make him urinate more so hopefully he can get some of the fluid off of himself. They changed his feeding to continuous instead of once every three hours which he seems to like better right now. He's still doing well, but please keep Joey in your thoughts and prayers. Thanks.

Eating

Joey is 13 days old today and the nurses started feeding him yesterday. He's only getting 10mL at a time and he didn't do so hot digesting it the first time, but each feeding is getting a little better. He needs to be able to eliminate the feedings now and then we can increase the feedings. He's off the dopamine now (the last blood pressure med) and he's still holding steady with the sedative and the inhaled medications. Joey is making steps in the right direction, but he's not home yet, so please keep praying. Thanks.

Holding steady

Joey is now 12 days old and he's holding steady with all of his settings and meds. The nurses are going to ask about weening his dopamine (blood pressure med) down and maybe off today and getting his sedative down some more. He's still on room air (no additional oxygen needed) and has been for a day and a half. He's still off the nitric oxide and the respiratory therapists stopped the percussion last night. We'll see how he does without it if he can get his mucous (snot) out on his own. He's still getting a couple of inhaled meds to help him out, but nothing too drastic. He's doing a good job, but PLEASE keep praying. Thanks.

No more nitric

Joey was able to be weened off the nitric oxide yesterday, so that's good news. His blood pressure meds and his sedation meds are both coming down, but we're not there yet. Please note the new picture of Joey with his eyes open. We've seen them before, but he always snaps them back shut as soon as he knows you're looking. :) One of the nurses caught him for a picture for us. Thanks again for all your prayers and assistance in the last week and a half. Please keep praying though, I can't stress enough that he's doing better, but he's not home yet. Thanks again.

Ain't he precious?

Thanks for the lift

Thanks to everyone who has given food, rides to my wife, prayers, and genuine goodwill. We are both very thankful for it all.

Nitric down to 2

Joey is still doing well, in fact, he's back on the path to weening off his drugs. He got lots of things done to him on Saturday and it took him a few days to settle afterwards. He's now doing well again and getting things weened off. His nitric oxide is down to 2 from the 20 where it started and the 10 that he's been sitting on the last few days. His dopamine (blood pressure med) is down some as well to 9 from 20 where it started and 12 where it's been for a few days. His nurse says this morning that he's tolerating being moved a little more now to, so hopefully he can get some of the edema (swelling) out of his system and he's on lasix now which I'm sure helps. His ascitis (abdominal fluid) hasn't changed much, but it's not getting any worse which is good news. He's still on the right path, but PLEASE don't stop praying. Thanks.

Daily Update

Joey is still doing pretty well today. I have to keep reminding myself that he's only 9 days old, so I have to be patient (very difficult for me). They've started Joey on a new medication that is supposed to help him get off of his last blood pressure medication and one of his inhaled meds. The respiratory therapists are doing percussion on him now every few hours to help mobilize his secretions out of his lungs, so that the snot can be suctioned out and help him breathe better. He's able to be moved a little more now on this new ventilator, so he looks better since he's not in one place all the time. He's headed in the right direction, but he's still pretty sick, so PLEASE keep Joey in your prayers. Thanks.

Daily update

I am going to attempt to give updates on Joey's progress on a daily or every other day basis. So far, Joey is one week old today and he's had a few good days in a row now. He's been weened off of one of his blood pressure medications and they changed his ventilator today to a different type of vent. He's opened his eyes for me a few times and he silent cries sometimes (looks like he's crying, but no sound comes out because of the vent). He's precious and we ask that everyone keep praying for him to get better so he can come home. Thanks.

Here's Joey!

Here's Joey on his first day at the NICU. Look up "Chylous Ascites" in the Google search at the top of the page if you are curious about the fluid on his abdomen.

Welcome

Welcome to the home of Mike and Jessica Tharp. We just had our first child on October 28th. He is a beautiful boy, and his name is Joseph Luke.