Happy New Year's Eve

Joey's first new year's eve...hurray! Not much new to report after the last few super long postings. Joey had a pretty good day yesterday and has had a quiet night according to his night nurse. I got to hold him again yesterday and it went well which is good since the last few times I've attempted to hold him, he had episodes or attempted to have them. He still likes his mobiles and his reindeer/moose buddy (there is some debate as to what this stuffed creature actually is). Joey's feedings have been bumped up to 32mL/hour (30mL is one ounce, if that helps anyone with their visualization of how much of a chunker Joey is becoming). Actually, the doctors are very pleased with his growth. Thanks again for all the prayers and support and please keep praying. Mike goes back to work Tuesday after having a week off and I'm going to be going back to work on Wednesday, unless something drastic happens between now and then, so please pray for Mike and I as well as for Joey this week. Thanks so much...we couldn't get through this without all our family and friends.

Nine weeks old

Joey is 9 weeks old today...wow. Joey had a good day yesterday hangin' out with his mobile buddies. Imagine the pictures Mike has up of Joey in the little blue outfit with his mobile, but make the outfit green. That was our Joey yesterday...cute as can be and trying really hard not to fall asleep (heavy eyelids and everything). We had a meeting yesterday with the doctors to make sure we're all on the same page. What's happened to Joey is so rare, that they are having some difficulty predicting what Joey's life will be like, but one thing they agree on is that it will be short. They told us that 10 years was pretty generous and it likely wouldn't be more than 5 years. That's providing Joey can stay infection free and that he gets more stable from where he is now. The next step for Joey is going to be getting a trach and a G-tube placed. The trach will establish a more permanent airway and hopefully lead to less clogging of the tube and fewer episodes like he's been having the last few weeks. The G-tube will help with feeding by putting the food directly into his stomach from the outside (through the abdomen wall, not up the nose and down the esophagus). If you've noticed from the pictures, Joey has no neck, so placing the trach may not be possible until he grows a neck (Joey has too many chins). This next step will be good for Joey because it will get things off his face and out of his throat (no gagging), but it will be putting him through a pretty major surgery and require him to be sedated for 2-3 days after to let the trach site heal. Joey didn't do so hot with his last surgery to get the central line placed, so that is somewhat concerning. We'll know more about when the surgery will happen next week when the ear, nose, and throat doctor looks at Joey. The second spinal muscle atrophy test did come back negative, so we're still waiting on some blood clotting tests and waiting for him to have surgery before we can move forward any more. We're still playing the waiting game and spending as much time as we can with Joey. Please continue to pray for Joey and for Mike and I as well. Thanks so much.

Lung issues again

Joey had another rough day yesterday. Part of his left lung was down (got plugged up with snot, so it wasn't inflating) so he was needing more oxygen and having trouble breathing. Consequently, he was fussing most of the afternoon which made for a difficult visit. I talked to the night nurse and she said that he's back where he usually is for oxygen requirements now since they turned him so that the snot would drain out of that lung. His midnight X-ray was good and he's resting comfortably now. That's one problem with the silent cry that Joey has, if we (myself and Joey's visitors) aren't there, how long would he cry before someone noticed? It just makes for a frustrating visit when Joey is crying and I can't do anything to make him better/more comfortable. The nurse says that we can attribute this problem with the procedure he had done Wednesday. The anesthesia slows down the movement of everything in the body (snot included) and since the central line was placed in his chest, the respiratory therapists haven't been able to do Joey's percussion treatments (where they "beat" the snot out of his lungs for him since he can't do it by himself) for an entire day. Now that the percussion treatments have resumed and the anesthesia has worn off, Joey should be back to normal for him with his lung issues. That's all that's new for now. We're still waiting on some coagulation tests (see how well his blood clots) to come back. Thank you all for your prayers and please keep them up...Joey needs a miracle.

For all the fans

I have uploaded most of our pictures of Joseph to my Picasa web album found here:

http://picasaweb.google.com/mrtharp

Christmas Baby

Christmas Eve with the mobile










It must get real boring in that crib all day









Joey's Christmas Outfit

Two Months Old

Joey is 2 months old today. I can hardly believe it, but he is much bigger, so I guess I can believe it. Joey had a rough day yesterday. Mike and I got there around 10:45 in the morning since he was having a procedure just after noon. Shortly after we got there, Joey had another one of his episodes where his heart rate dropped and his oxygen saturation dropped and Joey turned gray. At least I wasn't holding him this time. This one seemed worse than the last one since according to the monitor, his oxygen saturation dropped all the way down to 3% (normal for Joey is 95%-100%). In talking to his night nurse, she's sorry we've been having to witness these episodes, but he does have them regularly when he needs suctioned really badly. He had a plug of mucous in his vent tube that once it got out, he recovered to his baseline, but it was still pretty scary. Mike and I thought we were going to lose him yesterday. Then, after this episode, surgery came to take Joey downstairs to get a central line placed. Joey's line is inserted in his chest a little to his right of center. The tubing winds through his blood vessels until the tip gets to one of the major vessels near the heart. It's basically an IV, but instead of it being in a vein on his hand or foot, it's much more central (faster acting since it's nearer the heart and more stable since it's in a bigger vessel). These have to be put in surgically since the bigger vessels require a small incision to find and the surgeon needs flouroscopy (X-ray, but live instead of single shots) to get the tube placed correctly and Joey needed to be under anesthesia for the procedure. The surgeon told us that it was pretty difficult to get Joey's line placed and it took a little longer than they expected, but they're glad it's in now. Joey looked terrible when they brought him back, but his numbers were stable and nursing was just going to monitor him until the anesthesia wore off. Joey got some blood yesterday after all of this too, since he was a little low. That was Joey's big day. He's still sleeping now, but the nurse says he should be back to his normal self this afternoon. It doesn't seem fair that such a small little body that's so young should have to go through all of this, but we're trusting God to take care of Joey. We still need everyone's prayers as often as possible. Thanks.

Seeing Joey

Mike and I were there yesterday when Joey's tubes got re-taped. I know it's the first time I've seen Joey's little face without the tape. I think it's only the second time for Mike, the first being the day he was born. We got a bunch of pictures that Mike will get on the blog hopefully this evening. He's still recovering from lack of sleep during Christmas, so I've not been pushing him too hard for the pictures, but I'll start asking today. Joey's tubes get re-taped approximately every 4 days or so because saliva makes the tape loose and Joey moves his head a bunch which pulls on the tubes. He's getting more alert now when he's awake and he digs his mobile so much that there is a danger that he'll pull his own tube out by mistake with his looking around if they don't keep the tape in good condition. Joey is going for a central line placement today early afternoon, so if you can, say a prayer for him since he'll be transported downstairs to surgery and have anesthesia for the line placement. It's a fairly basic procedure, but it's still surgery. Thanks again for all the prayers and please keep them coming.

Tons of Loot

Joey made out like a bandit for his first Christmas. He got tons of loot, from outfits, to books, to toys, etc. I have a bunch of laundry I'm going to be doing today so he can start wearing some of his new outfits and using his new blankets. A few of the nurses even got him things because he's such a stud. :) Really though, everyone who takes care of him, just falls in love with him. Joey is such a sweet baby and he's just so darn cute. Mike will get some good pictures up in the next few days and I think you'll all agree on his cuteness. The night nurse just drew some blood for Joey's clotting factor tests and she says he's worn out. She's of the opinion that Joey will likely get some blood today. His body is starting to make his own blood, so they don't want to give him too much blood too soon, or his body will quit making his own, but he just can keep up with the amount they've been taking out for these tests. If he gets some blood, it may help with how lethargic he's been the last few days. That's really all the news I've got for now. Please continue to pray for healing for little Joey. Thanks.

Merry Christmas

Today is Joey's first Christmas!! So far he's received a mobile that hangs over his crib and plays Bach, Beethoven, and Mozart while it spins. We took a few pictures of him watching it and he just seems so happy (Mike says "entertained"). We'll try to get those pictures up in the next few days. He's also gotten some sweet new outfits that I'll get washed up so we can take them in for him and a frog that "ribbits". No new news to report on Joey. This Christmas, Mike and I are so very thankful for all the friends and family that have come together in prayer for us and especially for Joey. We're thankful for our time with Joey no matter how short that time may end up being. He's been a blessing already by bringing everyone closer together with a common prayer and by letting us be a witness to the doctors and nurses and everyone else that with faith and support of family and friends, you can walk through the valleys in life with sadness, but not with despair. We love you all and we thank you so much for the prayers and support and we ask that you all please continue to pray. Have a very Merry Christmas.

Christmas Eve

Joey's first Christmas Eve got him a bath tonight, a new NJ tube (feeding tube), and a re-taped ET tube (vent tubing). He now weighs a whopping 10 pounds 6 ounces and is currently sleeping. The nurse said he's having a great night and that he's sleeping because she wore him out with all the stuff they did. Joey had an army of visitors in yesterday (all of his grandparents and then some) and he slept through the whole thing. He was awake just an hour before all the visits and we had a really good time. We played with his reindeer buddy and with the mobile that he really likes. I was kissing on him and the nurse said he was definitely smiling with his eyes. I read him a few chapters of The Lion, the Witch, and the Wardrobe which put him to sleep for all his visitors. Oops. His visitors at least got to see a quiet sleeping baby and not a fussy one, so that was good at least. Nothing else new to report. The doctors are telling us to have a good Christmas and New Year and we'll figure out what's next in January, so we're in a holding pattern again which isn't such a bad thing right now. Please everyone, keep praying for our miracle, because that's what it's going to take. Merry Christmas!!

Eight Weeks Old

Joey is 8 weeks old today. He had a pretty decent day yesterday. No major issues, just a bunch of snot sucked out as usual. We had a meeting with the neurologist yesterday to get results of Joey's MRI and Joey has had a stroke in his spine. The doctors told us that in all their years of experience, they've never seen this. The most recent case study they can find is from 1988, so this doesn't happen very often. They are going to be sending off some blood for a study of Joey's clotting factors to see if he has some sort of blood clotting disorder that would have caused this, but we're not going to know when this happened, and if the blood tests come back normal, we won't know why this happened. Unfortunately, this doesn't change the outcome for Joey much, but at least we'd know what to test for in future pregnancies. They aren't giving us much hope that Joey will get any better than he is now and now he's dependent on a machine to breathe for him. We need a miracle, so please everyone keep praying.

EEG Results

Joey's EEG (brain wave study) was normal. We thought it would be, but we still are happy to have seizures ruled out at the cause for his drops in heart rate. I got to hold Joey yesterday and he did have one episode where his heart rate and his sats dropped, but not as far and for not as long as they did the day before. He didn't change color and they were able to suction him quickly. They suctioned him before we moved him this time and the nurse and/or the respiratory therapist was there the entire time I was holding him. I didn't hold him for long (about 30 minutes), but I was afraid that the longer I put it off, the more leery I'd be of holding him at all. I brought in his Christmas present all wrapped up, so he'll have it on Monday. It's a little duck that rattles when you shake it and says "quack quack" when you squeeze it's belly, but don't tell Joey what it is. :) Thanks again for all the prayers and concern. We are truly blessed to have such wonderfully supportive family and friends. Please keep the prayers coming for Joey to move and breathe on his own so he can be our little miracle baby.

Worn out

Joey did fine with his MRI yesterday. His temperature stayed where it needed to while he was gone. Also, he had an EEG where they put sticky things on his head, so he got his hair washed after that and his feeding tube put back in his nose. Somewhere along all that, he got a little chilly, but they covered him up with a heavy blanket and he warmed back up. Don't have any info on the MRI or the EEG yet, but Joey did have a nice long nap in the afternoon. Somewhere between 5:00 and 6:00 we got Joey all bundled up (burrito style) so I could hold him, but during the transfer, he got gunked up and needed suctioning. The nurse was only able to suction him twice before his sats and his heart rate were dropping into the 50s and she had to start bagging him to get oxygenated air into his lungs. We got him back in bed, the respiratory therapist came in and the doctor was called. The therapist was able to suction him out a bunch and his numbers came back up. All told it probably only took about 2 minutes, but to scared parents, it seemed much longer. We were definitely uncomfortable and we were pretty concerned we were going to lose him, but he seems to be OK now. I've called to check on him a bunch tonight and the respiratory therapist told me he did have one more episode this morning where his heart rate dropped, but she was able to suction him quickly and his sats didn't drop very much. After his episode yesterday, Joey really looked worn out. He had a really big day yesterday and he needed to rest. Hopefully we have a more uneventful day today. Everybody keep praying for our little Joey baby...he needs a miracle. Thanks.

MRI and EEG

Joey is having his second MRI this morning at the main campus and then will be having his feeding tube replaced and an EEG (brain wave study to rule out seizures) later this morning when he gets back to his room. The feeding tube has to come out of his nose for the MRI since there is a metal tip on the feeding tube and that would not be a good thing in a giant magnetic machine. The EEG is checking to be sure Joey isn't have a seizure every time his heart rate drops. My gut instinct is he's not because he always gets better with suctioning. I think this is his way of getting the nurses attention faster when he wants the snot sucked out of him. He's demanding about the snot thing. Everyone that is caring for Joey this morning is very aware that he got really cold last time he left his room, so they are being super careful not to let that happen again. Murphy's Law would say that he'll probably cook this time since everyone is so concerned about him freezing, but we're hoping for good steady temps and a good report from the MRI and the EEG. (not that we'll know anything today) Thanks again for all the prayers for us and especially for Joey. Please keep them coming so we can all have our miracle baby.

MRI scheduled

Joey's repeat MRI is scheduled for Wednesday morning at 6:30. This is the one that he has to go to the mother ship (main campus), so pray for his safe and uneventful transport around 5ish if you're up that early. We have two night nurses that we really like that Joey knows well and one went the first time Joey had an MRI and the other nurse is going with him tomorrow. That makes me feel better since Mike and I can't go. Not much new to report right now. Still waiting on results of the in depth blood tests, so Joey is comfortable as long as his airway is clear and his temp says in the right range (and his diaper gets changed). We're in a holding pattern. Please keep praying for our miracle baby to move and breathe on his own. Thanks.

Burrito Baby

Mike and I got to hold Joey again yesterday. We wrap him up in a blanket in order to pick him up and keep all the tubes and wires straight and he ends up looking like a little burrito. He's just adorable no matter what and it's fun to call him our burrito baby. Not much new to report. Joey did well with his first time visitors. They both got to see his eyes and see his silent cry. Those are the two tricks that get the most reaction, so he preformed well. :) He's getting a little more demanding with the suctioning right now. His heart rate drops if he's not suctioned right away, and he's having a little trouble regulating his temperature. He has to be checked and wrapped and unwrapped accordingly. Other than that, there's not much new. Please everyone keep praying for healing for our little Joey so we can get our miracle baby home.

Visitors

Joey is having a few firsts this weekend with visitors. He got to see his great nana (my grandmother) for the first time on Saturday and he's going to see his aunt Kris (Mike's sister) for the first time today. Other than that, Joey is just hanging out. He's comfortable as long as he stays snot free, so we're just enjoying the visits we have with him and are waiting on test results. Thanks again for all the prayers for us and especially for Joey. We know we are so blessed to have such wonderful family and friends and we're thankful. Please keep praying for a healing miracle for our little Joey.

Seven weeks old

Joey is seven weeks old today. We're still waiting on test results, so no news yet. The neonatalogist (baby doctor) and the neurologist (nerve doctor) want to repeat the MRI of the neck since Joey doesn't seem to react when the nurses draw blood or start IVs in his arms and legs. If Joey is having trouble with the sensory system, than that would be something new to look at...so we'll see what the MRI shows (they won't be doing it until Monday). Also, the MRI has to be done at the mother ship (main hospital) so please pray for the transport on Monday as well as continuing to pray for our miracle. The nurse told us yesterday that she is impressed with the way Mike and I are handling the whole thing, so Joey is already touching lives in this past seven weeks. Thanks again for the prayers and keep them coming.

Still Waiting

Joey will be seven weeks old tomorrow. I can hardly believe it's been that long. Not much has changed over the last few days, so there's not much to report. We're still waiting for test results to come back to hopefully give a name to what's going on with Joey. He's just so precious when he's awake and looking around. Yesterday, I was there and I kept kissing him on his head and his face and he squinted his eyes up like he was smiling, but it's so hard to tell with all the tape on his face holding the vent tubing in place. He's already our little miracle because so many people have been brought together with a common prayer over the last seven weeks. We're just hoping for the miracle to turn out the way we want it because we want Joey healed and home. Everyone please keep praying for God's mighty hand to heal our Joey baby. Thanks.

Prayer for healing

Yesterday Joey was anointed by a couple of elders from Mike's dad's church. They read a Psalm and a passage from James about if anyone is sick, the elders of the church should go to them, anoint them with oil, and pray for healing, so they did that. It was pretty cool since I got to hold Joey through the whole thing. He was awake and looking around for most of it too which is always cool. The nurses took some of Joey's blood for another series of tests yesterday as well. This is the blood test portion of looking for something more specific. No word yet on the biopsy tests that were looking for something more specific. At this point, Joey is comfortable as long as the nurses keep him clear of snot (secretions) and his temperature stays where it should. He sleeps or hangs out with his reindeer buddy (rattle that's taped to the side of his crib) and his fishy mobile that our neighbors let him borrow. Other than that, no real news to report on Joey's condition. Please keep up the prayers for healing. Thanks.

Status Quo

Joey is continuing to just hang out right now. Not much to report since not much has changed. The docs are doing (sending out, not actually doing them themselves) some more in depth tests to see if we can put a name on what's going on with Joey. They still aren't too optimistic that even with a name, anything can be done to help him. They're trying to find a name so they can give a more definitive prognosis and it will help knowing what to expect for our future family. We're still praying for a miracle because that's what it's going to take. Right now, Joey is comfortable, so we're just waiting. Thanks for all the prayers and please keep them coming.

Due Date

Today is Joey's due date. That didn't pan out, huh? Joey is doing fine. He had a pretty uneventful day yesterday, so there's not too much to report. The doctors are going to recheck some more specific things on Joey's muscle biopsy and they're going to take another blood sample to recheck for SMA and to check some more specific things with that too. They're not sounding too optimistic that anything they find will be treatable. At this point, they're just trying to give whatever Joey has a name so they can give us an accurate prognosis. At this point, all the glory would have to go to God for Joey's healing since medical science is pretty dumbfounded. Please, everyone keep praying for our miracle.

Tired Boy

Joey has been working a little harder to breathe with some extra secretions in his lungs. He got pretty tired from working so hard yesterday, so they had to bump him up on some of his vent settings. I know it's their job to be very factual, but the doctors don't seem to be too optimistic that Joey's retest will come back negative again. We're waiting it out and trying to remain cautiously optimistic because we know God has it in His power to heal Joey. Please keep praying for our miracle. Thanks.

Bath Time

Joey was 6 weeks old yesterday and he got his first bath (that I gave him...he has been bathed before by the nurses). I got to give him his bath and then hold him. He did just fine with the bath and he was looking at me while I was holding him, but then he started to get sleepy. He fought it for a good ten minutes with the heavy eyelids and the whole bit, but he eventually fell asleep while I was holding him. He's just too precious and I have to believe that this is the beginning of our miracle, so please keep praying. Thanks.

Hope

Joey is 6 weeks old today and his test for spinal muscle atrophy came back negative!! We are waiting now for a retest since he did get blood right before they did this test, but this could be the beginning of our miracle. Joey still needs to move his arms and legs on his own and breathe without the vent so keep praying very hard. If this is the beginning of our miracle, we want to be sure to give God the credit, but we're trying to be cautiously optimistic since we are still waiting on the retest and he's not exactly healed just yet. I feel lighter than I've felt for weeks, so keep praying because it's working. We're so grateful for the prayers because this is part of an answered prayer and it gives us hope. Thanks again for all the love and support and please keep praying as hard as you can.

Chilly

Joey got a gel mattress yesterday because one of his knees is a little red from being on his tummy, but he got pretty chilly over night. The night nurse said that the gel mattress doesn't have any kind of a heat source, so Joey got too cold. She took it out and put the foam mattress back in, so we'll have to find plan B for his knees. He really seems to like being on his tummy, so there are some little pads for his knees to keep them from getting sore. His temperature is back up now, so everything is fine. Yesterday, one of Joey's therapists got him a little reindeer rattle and set it up on his vent tubing. He was just looking at his new buddy for hours. Even when his grandma and I were there, he'd look at us briefly, then go right back to his new buddy. It was awfully cute. Thanks again for all your prayers and concern and keep praying for a miracle for Joey.

Holding our Joey

Mike and I both got to hold Joey again yesterday. He was so peaceful while we were holding him, but as soon as we had to put him back in his crib, he woke up and started looking around. It's so hard to leave when he's awake. Joey had a really good day yesterday, so there's not much to report. Please keep praying for God's healing on little Joey.

Fussy afternoon

Joey had a rough afternoon yesterday. His vent tube moved a little and ended up in the wrong place for him. It worked it's way to one side, so the other side wasn't getting inflated as well and got all gunked up with mucous. The doctor had to X-ray to see where the tube was, then get the tube adjusted and re-taped, then X-ray again to be sure it was in the right place. After all that, Joey was just fussy all afternoon and they ended up having to give him a little medicinal help to settle down. He was sleeping when I left and I spoke to the night nurse right after she came on and she said he was resting comfortably. I called this morning and his oxygen requirements were back down to room air again, so he's fine now, he just had a really rough afternoon. Thanks again for all the prayers and please keep it up. We need Joey to start moving his arms and legs more on his own. We need a miracle.

Super Double Chubby Size

Joey is doing fine with nothing really new to report today. The doctor said that he wants to fortify Joey's food so that he'll gain some more weight. I'm not sure what normal would be, but the doctor said that he's not doing so hot on the growth charts for his age, so he's going to up his calories to make him chunkier. Thanks again for all the prayers and support we've all received during this difficult time. Please continue to pray for Joey and God's healing on him, so we can give God the glory for our miracle baby.

Eat It Up

Bigger tube

Joey is growing and the tube he had down his throat for the vent was getting loose. He had a leak around it at was making wheezing sounds. The doctor decided to put a 1/2 size bigger tube in yesterday morning, so now the leak is gone and the tubing kinks less, so that's a good thing. Joey is eating a ton and his sleep/wake cycles are getting a little more regular. The nurse calls his patterns "appropriate". Basically means that he's either more asleep or more awake when we're there, so it's fun when he's awake. We can see more of his eyes and he looks around and will look at you when you're talking to him. He's just so precious. Thanks so much for all your prayers and please, please continue to pray for Joey's arms and legs to move more and for him to breathe on his own. We need our miracle baby home.

Family time

Joey is still resting comfortably and Mike and I both got to hold him yesterday. We have an updated family picture that Mike can get on the blog later (hopefully). He's still just too precious and we love him tons. All the nurses and therapists love him too, which is pretty cool. Yesterday was pretty uneventful, so I don't have too much to write. Oh, he is going up on his feedings, so he's becoming a little chunker. :) Please keep praying for our miracle baby so he can come home. Thanks again for all the prayer and keep it up.

Five weeks old

Joey is five weeks old today and he's resting comfortably. His night nurse gave him a bath and she said that he enjoyed it. I filed his nails yesterday because he was getting some talons on his fingers. We finished reading the Hobbit yesterday as well. We did confirm that the blood test takes two weeks to run, so we're looking at about two and a half weeks before we have any results. Right now we're all just hanging in there and enjoying our time until we get results. No use worrying until we know something for sure, but PLEASE keep praying really, really hard for God to heal Joey. We need our miracle baby.

Better on the vent

Joey has improved on his vent settings again. He had required more help from the vent the last four days or day since he was coming down with this lung infection, but he seems to be getting better now. He's back down to room air and his rate is getting back down closer to where it was. He's a pretty tired boy since he had to work so hard to breathe over the last few days, so he's resting, but he looks so much more comfortable than he did. Thanks again for all the prayers and support. We're still trying to confirm it, but his nurse told us yesterday that the blood test we're waiting on is only set up on Tuesday and then takes two weeks to run, so we're looking at approx. three weeks before we get any results, so that's a pretty long time for our prayers to work, so please keep praying. Joey needs to move and breathe on his own, so he can come home and be our little miracle baby. Thanks again for praying for Joey and please, please, please continue.