Homeward Bound

WOO HOO! We are heading home this evening. Ty has been up walking with a walker. It was a very challenging fight, but he did it. He cried the whole time. He is extremely stiff and sore. He only walked a bit, and was ecxhausted from it. The PT said that it will just take some time to regain that strength. We know that sitting around and lying around will just make it worse. So we have to encourage him to use it even though it is painful. He is still getting accustomed to the walker and trying to learn how to use it. Home health will be bringing us a walker to use. The nurses will be coming in shortly to give me the 101 on how to use Ty's PICC line. So we are getting the ball rolling. It is so good to hear the words you can go. We are all so exhausted. We thank each and every one of you guys for your wonderful prayers, and acts of kindness during this difficult time. We could not have faced it alone without the care of our family and friends.
I will periodically be updating the blog to fill you in on Ty's progress. Keep praying for a smooth transition home and continued recovery. We might be bringing Ty to Kidzfest tonight for a tiny bit depending on how he feels and what time we are discharged. We should have a wheelchair for this. We certainly don't want to overdo it. As for tomorrow, I am taking my sweet Tristan to see the Cheetah Girls. We have had tickets for a long time. She has been wonderfully obedient during Ty's hospital stay. I have just been so blessed with a great daughter. She deserves some mommy time tomorrow. Well, until next time.

Up and at it

Ty is up and at it with the coloring this morning. He is still having trouble moving his leg, but PT is on their way today to help assist him. He is sitting straight up right now and coloring in his Justice League coloring book that his Pre-K program sent him. He just colored a picture of Wonder Woman, or "hot girl" as Ty has been calling her. That child is a mess. We are hopefully going to get him moving a little bit today. Last night was a good, restful night for him with only pain meds before bed, and this morning when he woke up. He is acting like himself more and more each day. He has been fever free for 36 hours and his blood count is starting to get back to normal. We are maybe going to be able to come home tomorrow. We will see. Thanks so much for the prayers. I will continue to keep you posted throughout the day.

PICC Line is In

We have our PICC line!! YAY! Ty is resting tonight. He had a productive day and is doing quite well. Pray for no fever tonight. It is a crucial night. PT should be by tomorrow to assist him in moving. I will keep everyone posted. Check out the video from Mark Shultz that I have posted at the bottom of my blog. Go all of the way down. If that won't make you cry, nothing will. As much as I feel that way about Ty; I can't fathom that God loves him more!!! I couldn't move it up to the top b/c I am on Andy's laptop, and I couldn't get it to work. I am also not checking my email on Andy's laptop, b/c I can't so if you have emailed me and I haven't answered you that is why.
Love ya lots

Update

Ty made it from the bed to the chair this morning for the first time. It is the first time he has been off of his back since last Friday. He did well. Andy and I decided to give him a bath, but his pain is still there. Let's just say the bath didn't go over too well. Ty screamed so loud that I think the whole UT campus heard him. His hip is really sore, but I also think he is afraid to start moving it b/c he knows what it has felt like. PT will definitely be needed to help us get him moving. We are still waiting on that. I think they are trying to get the PICC line going first. The PICC line nurse was in around 2:15pm. She tried to get the PICC line in without Ty going under GA. She was able to get it into his vessel, but unable to move it along due to Ty's scar tissue from the 50 thousand (not really but it feels that way) IVs he has had in the past. He was extremely brave as she did her thing. He did cry, but never kicked or thrashed around. I can tell you now I would have been up off of that bed. Needless to say, it wiped him out and he is asleep now. So he is now headed back to the OR under anesthesia for them to put in the PICC line. Hopefully they will only gas him just a bit. It is a pretty quick procedure once it gets going. We are doing okay. I am exhausted from sitting here. Andy is doing okay, but he is antsy. We all know how he can't sit still for anything. We just want to come home- really, really bad. My poor little man is also allergic to the detergent that the hospital uses on their sheets. He has a rash on his back and butt. He has been scratching it quite a bit today so they are going to get him some cream. We have fixed that, and now he is laying on his fuzzy blanket from home. Still no BM. I am beginning to think it will be on my shift tonight after all. I will update more after the PICC line is in. All in all it has been an okay morning and afternoon.

STRENGTH

Last night was my night to stay at home with the other two kiddos and sleep in my own bed. Oh how I hate to leave my Ty-Ty, but how I long for my bed and my other babies. I have learned to treasure the time that I spend with them. Not that I don't already, but I think sometimes I take it for granted that I am able to be with them so much. It has made me sad not to have mommy routine this week.
On to other things though b/c I digress. Dr. Blackmon (Ty's ped.) and Dr. Crawford (Ty's ortho.) came in to talk to Andy this morning. Praise the Lord that Ty's fever went down after a dose of Tylenol last night, and did not return. I have no doubt that this was the power of many prayers being lifted up on his behalf. The docs stated that Ty's blood work looks real good, and that our next goal is to get Ty to have a BM. He has not gone since last Thursday. AHHHHH! Granted he has not eaten, but still I can only imagine. So Dr. Greg told Andy that he would have to give Ty an enema if he had not gone today. He also told Andy not to worry that he would make sure that happened on my shift. Okay, Greg if you read this... Not so funny;) What has to be done must be done though. The non-glorious side of motherhood.

The next step is physical therapy to get him up and moving. Also he is slowly being weaned from the morphine. He is rather cranky at times, but I know I would be too. He can either be high as a kite, or hateful as a bear. It just depends on the level of drugs in his system at the time. Andy said he had a decent night. The nurses had to change his IV. It did really well though. It lasted in his left hand from last Friday until last night- almost a whole week. They moved it to the right hand last night. We are praying to contine to see good results and soon his PICC line will go in. It looks like he will probably miss the Trunk-or-Treat festivities that our church is sponsoring, but I will be sure to load him up with his favorite M&M's- or wim wims as he would call them when he was little. He is a chocolate lover just like his momma! He and Tristan are suppossed to be Lucy and Peter from Narnia. How ironic that Ty is Peter. I know this child is so strong! It reminds me of a couple of verses

Psalm 18:32-33

It is God who arms me with strength, And makes my way perfect. He makes my feet like the feet of deer, And sets me on my high places.

I may just bring his costume to the hospital. He has a toy sword, and has been dying to play with it since I bought it.

We continue to covet your prayers. It is so hard to see your child in this situation. I also know this promise is true from Romans 5:3-4

And not only that, but we also glory in tribulations, knowing that tribulation produces perseverance; and perseverance, character; and character, hope.

Through all of these trials that Ty endures, I will hold on to this promise. For it is exactly that, a promise. God's word does not lie!!! I am honored that HE is shaping our character through it all. I am anxious to see what the Lord has in store for Ty. It is something really big- I have no doubt about it. I will continue to update the blog often as Ty is recooperating. I am staying at home for a bit with Evan this morning. My mom will then come to watch him while I go to the hospital for my shift tonight. It looks as though we might be on the tail end of things now. I pray that we are. I am grateful for a couch to lay on in the hospital, but it sure isn't like my sleep number bed.

By the way, the "hot" anesthesiologist came in to check on him yesterday. He was sleeping though. She was so sweet to do that. Children's has been great. I meant to put this in my last post, but forgot. Ty's bottom tooth was loose before his first surgery. The docs pulled it out while he was under GA, and then they put it in a little bowl and taped four one dollar bills to the top. They brought it to us, and told us that the tooth fairy had visited in the operating room. Ty thought that was so cool. I just thought it was a great thing to do. He lost his first bottom tooth last week. Here he is from last week after losing that first tooth. I love this picture.

I just got a call from Andy while typing this update. Ty is sitting in the chair! WOO HOO!!! Keep those prayers coming.

Calling all Prayer Warriors

PRAY! PRAY! PRAY! I just talked to Andy, and Ty's fever is back up to 102. I am beginning to become frustrated, and yes, I will admit I am frightened. We are dealing with some serious staph, it is highly aggressive. I will post in the morning, hopefully fever free.

Feeling a bit better

We made it through the night with some decent rest. He is still having hip pain, but Dr. Crawford says that he really stretched out the joint with the scope yesterday. He has been fever free since early this morning so we are looking for it to continue on to the 24 hour mark. His blood work should come back tomorrow too. The pain should start decreasing tomorrow, and hopefully he will start to get back to normal. Physical therapy will come tomorrow to help him begin moving his right leg again. We are still looking at 3-4 more days in the hospital at least. Keep on praying!!!

Here We Go Again

Ty just came out of his second surgery of the week for the septic arthritis of the hip. The ortho doctor, like me, did not like his 102 fever last night, and even though after his blood work showed minimal changes we made the decision to go back into the hip for another look for more bacteria. We know that Ty never does things like he is supposed to do them; so after three days of his pain not really diminishing we knew something probably wasn't what it was supposed to be. It turns out that he had 3 cc more of bacterial infection inside his hip. The doc took a scope into his hip to examine the joint and cartilage. He says it all looks great, but that once again we caught it in time. He said he would not have gotten better had we chosen to wait for another surgery. In fact, he would have gotten worse. So now he has had his hip washed out one more time, and prayerfully is on the mend. He is once again on the Tordol and also Morphine for pain. The good news is that the bacteria is staph. It is a non-resistive staph, and they know just what type of antibiotic will treat it. It has just been a really aggressive staph. Tomorrow should be a day of recuperating after surgery, and hopefully the next day will go much better. Please keep him in your prayers still. By the way, thanks so much to my co-workers at St. Mary's for the yummy looking edible arrangement. Ty can't wait to dig into those Mickey Mouse shaped pineapples. We love you all.

The latest

Ty has a fever this evening. We were looking good at being fever free for almost 24 hours when this afternoon he started to spike the fever again. They did more blood work to see if the bacteria might be back. Pray that it is not. I am at home tonight to rest while Andy is staying with him in the hospital. When I spoke with Andy a moment ago, his fever had come down from 102 to 101.7 with Tylenol. He is still on the Morphine for pain management. He will see a physical therapist tomorrow to try to get him up and moving. My poor little angel boy has been laying flat on his back since Friday evening. I know he is so weak, tired, and in pain. I pray for this to leave his body immediately. Thank you so much to everyone who has visited, brought him toys, prayed for us, offered to help, and those who are helping us out. What would we do without you? Thank you too to my church buddies that work at ETCH. I so appreciate you checking on me, bringing me food and praying with me. Ty will pull out of this. He is a fighter.

On a funny note, here is a picture of him last night while on the morphine high. The shower cap has shampoo in it for bed baths. It is too cool. Andy was washing his hair.

Still hangin' in there

Ty is still hanging in there. I need to update my original diagnosis from the last post. Ty's toxic synovitis (ts) developed into septic arthritis of the hip. This occurs when a bacterial infection collects in the hip. This is much more serious than the ts. TS is just a little inflammation of the hip joint, which goes away in 3-7 days. It can be treated with basic ibuprofen.



We talked with the doctor today, and the infection is indeed staph. What type of staph we do not know yet. We will probably know that tomorrow. The doctors have told us that hopefully by late today or tomorrow his pain will start to lessen some. His body is slowly fighting its way back to normal. Ty had a bad night with pain last night. His leg continues to cause him unbearable, and unbelievable amounts of pain. He is on morphine and tordol, a iv ibuprofen. The plus side to these are that they make him feel better, almost too good. The down side is he hasn't been resting well b/c the drugs are making him high as a kite. He just talks, and talks and talks. You would really think he was just fine if you didn't know any better. Last night though we let the medicine wear off too much before he received another dosage. This caused his pain to be unreal. At 2:00am this morning I was at my wits end. While waiting for the drugs to kick in Ty turns to me and says, "Mommy, I love you. I wish you could be in the hosipital" I about lost it. I try not to cry in front of him though. Gotta keep his spirits up. I have been telling him over and over how I wanted to be in his bed taking the pain for him. I am sure that is what he meant when he said he wished I could be in the hospital. This child is a lesson in preserverance for me and the rest of my family. Oh how my God uses situations to glorify His name!!!

He is resting as I type this. I think he is so exhausted that the sleep has started to overcome the power of the drugs. This is good b/c he so needs his rest. They checked his blood count this morning and we are waiting for the results. They want to see it either remain the same or decrease. The good thing is that his fever has gone down. I pray that this is a sign he is on the mend. The blood counts will tell us for sure. If the counts are looking like they should, then hopefully we will get Ty's pic line in in the next couple of days. Then once he is stable he can come home. He will be on iv antibiotics at home for some time, possibly weeks. He has yet to move from the bed. So my next prayer request is for the pain to go away enough so that he can move out of the bed. I am praying that he will not have to undergo physical therapy for this hip. That is a question that I have for the orthopedic doc when I see him today. All in all the summary seems to be improvement. Slow and steady, but it is coming. Please continue to pray. Love ya lots, until next time....

Pray for Ty

This is how our story starts. Yesterday morning Ty woke up complaining of right knee pain. I immediately thought it was growing pains so we gave him some Tylenol and then sent him to school. Around 9:00am his teacher, Mrs. Stephanie, called me to tell me that Ty was really complaining that his leg was hurting and he was crying. He was telling Mrs. Stephanie that he fell off of his bike on Thurs. afternoon while playing outside. I thought that maybe he had twisted his knee or even broken a bone so I went to pick him up and take him to Children's for x-rays. Mrs. Stephanie had to carry him to the car for me b/c I was carrying Evan, and Ty could not walk at all. Gramps met me at the ER and helped me get Ty in and settled. By this time he was screaming in pain. Every time he would bend his leg to 90 degrees or rotate it at all he would cry out. He was saying that his knee hurt and now his hip. The doctors took his blood and did leg x-rays. Ty's bloodwork came back fine and the x-rays showed no broken bones. The doctor just thought that he had a severe bruise from his fall. The doctor did mention that it could be something called toxic synovitis, but that usually the patient has a cold for a few days and runs a low grade fever with hip pain on one side. Ty only had the hip pain, but I should have known because Ty chooses to do things that are not by the text books. He gave Ty ibuprofen and sent us home telling us to have Ty rest and to see the doctor the next morning. So we get him home, carrying him to and from the car, house, etc. Anytime he is in another position other than flat on his back he is writhing in pain and screaming crying. Immediately I know that something just isn't right. I mean the kiddo has had his eyes cut on multiple times and never cried like this. His pain tolerance is just extremely high. I knew it wasn't a bruised hip. I just wasn't sure what we were dealing with. So after talking to a friend who has a friend in orthopedics, he suggested I take Ty back to Children's. I completely agreed, and I was so thankful to have my concerns affirmed. We get to the ER and they do more blood work. Ty's counts had tripled in the 3 hours that we had been home. He also started to run a fever. The diagnosis- Toxic synovitis. They did an ultrasound on his hip and saw fluid collected on it. So they admitted us last night and by 11:00pm we were in a room. They wanted us to talk to the orthopedic doctor this morning b/c he wanted to drain the fluid. There was a chance that it could be a bacterial infection. In fact, they were pretty sure that it was. So at 1:30pm this afternoon they drained the fluid. He got 5cc of pus out of the hip. The pus is definitely a bacterial infection. So Ty is on a strong IV antibiotic. They are sending off the bacteria to determine what kind we are dealing with. It is staph, but what kind they are not sure of yet. Most likely it is MRSA. So Ty will be at Children's Hosptial until at least the latter part of next week. When he does get to come home it will be with a pic line so that we can administer his antibiotics at home. He will have to be out of school for probably 3-4 weeks. He is in preschool, but he absolutely loves it and will be devastated to know he has to miss. Tonight with the fluid gone and the bacteria out of the hip, he was feeling a little better. He still cannot stand on his leg. It is extemely sore. The doc says that hopefully in the next day or two he will start getting back to his normal self.
That little guy has been through so much!! I know God has an awesome plan for him, and He is toughening him up for some serious battle time.
Please pray for us. That Ty would heal quickly, and that the stress of being in the hospital with two other children to care for would not overcome us. We have had lots of offers to help with Tristan and Evan. I thank each one of you who have offered, and may be taking you up on that offer. I am not really sure what we need at this point. We are taking it day by day. Just continue your prayers. We really feel them.
On a funny note, the nurse had given him some morphine right before the procedure this afternoon. It made Ty high as a kite. So when it was time to talk to the anesthesiologist about the procedure, she introduced herself. She was young, blonde, and attractive. So Ty is laying in his bed, and Andy and I are on his left side and the doc was on his right. He puts his hand to the right side of his mouth to hide his lips so only Andy and I could see him talk. All of the sudden he whispers really, really loudly. "SHE'S HOT!" I thought I would die. We all three just busted out laughing. It was so good for the soul. At least he has good taste. GO TY GO! I will keep you all posted as much as I can. Ty is in room 405 at Children's Hospital.

Love you all

God's Glory

It is truly amazing how Glorious God is!! Every time I witness another account, I stand amazed and oh so humbled. I wanted to share a praise from a fellow blogger friend of mine. Her youngest daughter Greer has a facial/scalp PWS. As you all have read from my educational blog post, she is definitely at risk for SWS. So far though, there are no signs. This is a huge Praise, and as a PWS/SWS mom I can tell you it I am sure is an absolute peace for her mommy. Check out Megan's blog at www.holdituptothelight.com It is also to the side on my fave blog lists.

As for our family, we have been doing okay. The kids had their Fall Break last week on Thur-Mon. so we took off camping in Pigeon Forge. We spent Thursday in Cades Cove where we saw lots of animals. We saw a bear, wild turkey, a coyote, and a whole family of deer. A huge 12-pointer and his family. I think Andy was salivating at those 12 points. The kids loved it, and the weather was awesome. We took a picnic lunch, and just enjoyed God's creation. I am going to post the pictures soon. Friday we went to Dollywood with some school friends. It was fun too, but the highlight of the day had to be that Ty was tall enough to ride "The Blazing Fury" This happened just since the beginning of summer when he was still too short to ride. He loved it of course. I remember it being my favorite when I was little, and I am so glad it is still around for the kids to experience. It is funny to remember the experience of riding it when you were little versus riding it now. It is really pretty cheesy. NOT to a 5 and 6 year old though.
Little Evan has cut two of his bottom teeth finally. He is starting to make it on to his hands and knees and rock a bit. I am so not ready for him to crawl. It has gone by so fast. Christmas will be here before we know it. Take care until next time.....