Monday, March 31, 2008

Mon. 3/31 - update

This morning started off great! Caed was in such a good mood when I got to the hospital. (boy it sure is nice to walk in to a smile!) He was doing so good that he was even talking and laughing with Dr. Goldthorne (a rarity!). She asked him if he wanted to get out again today since it was going to be such a nice day. He actually said yes this time. Instead of a 2 hr. pass, we got a 4 hr. one. I wasn't sure how it was going to work since he has the feeding tube in now, but they just clamped it off, so he was able to "go free" for awhile. They did go ahead with the blood transfusion today. It took 4 hrs., so we didn't get to leave the hospital until 5:00. We (Caed, Reagan, my mom, and I) went back to the same park as before, and this time he felt a little better to actually "play" some. He went down a couple of slides, sat in the swing, did the teeter-totter, and rode in the jeep again. However, he would do a few things and then want to go sit on the blanket awhile....get up and do something else for a few minutes and then sit back down. You can tell he doesn't have much energy. The little that he did today wore him out! We had been at the park almost 2 hrs. when he started crying wanting to go back to the hospital. We were a little disappointed since we still had 2 more hours to be away, but also knew his body was telling us it was time. Daddy and Grandaddy also got to come for awhile to see him play. Another cool thing about today was that we got to change rooms. They had one of the big corner rooms available and asked if we wanted it. It is much bigger (can fit 2 beds)! So now, Todd will have a "nice, big, comfortable" bed to sleep in at night. He was a little worried about it, hoping he wouldn't get so comfortable and not hear Caed. ha! At first Caed cried and cried when we told him we were moving to another room. As many different times as he has had to "move" somewhere else (for certain procedures), I don't think he believed us that this one was actually "good!" Todd will fly out tomorrow around noon to head back to Celina for a few days. Hopefully, this week will be a little easier since it's not as long, and also now that we have a system for those of us taking over his night shift.

Again, our main prayer need is for Caed to begin eating and to keep it down! Today he ate 4 bites of yogurt, 1/2 vanilla wafer, and 1 bite of applesauce. (and they were forced) His eating is obviously crucial for us to be able to go home. They increased his amount on the feeding tube to 15 cc. Hopefully this will begin stimulating all the organs involved in the digestive process. They have "been on vacation" the last 31 days!

We also want to say a special THANK YOU to all of you reading this blog right now that we have never met! We don't know you....and you don't know us......and YET you are lifting our son up in prayer!!!! It is beyond our comprehension how far reaching this has become. Thank you, thank you, thank you....for caring enough to pray for Caed! God is at work, and YOU are apart of it! May you be richly blessed!!!!





Sunday, March 30, 2008

Sun. 3/30 - update

Today was not necessarily a bad day, but it wasn't really a good one either. He and Todd had a pretty normal night (sleep a few hours....throw up....sleep....go to bathroom....cramps....sleep....throw up....). He was crying a lot when I got to the hospital this morning. Just didn't seem like he felt very good. The drs. came in and didn't really have any new information. They decided to keep his feeding tube amt. the same for today, and will just continue to watch his input vs. output. The rest of the day was the same as yesterday: a few moments of smiles, but primarily crying and overall not feeling too great. My dad came this afternoon and took over while I went to Idalou to spend some time with Reagan and Caleb (our 2 long lost children whom we don't get to see much). It was so hard leaving the hospital. Not because I don't trust my dad (quite the opposite!), but just knowing that if Caed had it his way, Mommy would NEVER leave! I snuck out while he was sleeping, and I dreaded the moment when he woke up and realized I wasn't there. My dad said he did ok the rest of the day, but did have those moments of crying for me. I enjoyed having a "free day," although I feel guilty for even saying that. I want to be with Caed every waking moment, but it sure takes a toll on your body (physically and especially mentally) living at the hospital. I think days like today are good for all of us (even though Caed may not agree). Caleb and I took a long nap together on the couch this evening, and it was so good to have that time again with him. He's not the same baby that I remember before all this happened. He is growing and changing so fast. His 2 mo. checkup is coming up, and my good friend Marilyn (nurse) has made arrangements for him to see a pediatrician here. His office is in the hospital just downstairs from Caed, and he is very aware of our situation and everything that we have been through. I am thankful again that the Lord is taking care of all the details!! It was also good to spend some time with Reagan. (although it was less because she was so busy playing with her cousin) However, we did have a moment just the 2 of us where we talked about everything going on. She had tears in her eyes as I talked, and for the first time I realized how much her little world has been turned upside down this last month too. Our family is scattered! Todd and I only see each other in passing (in the mornings when I relieve him, and at night when he relieves me). Reagan and Caed only get to see each other a few times a week and obviously that time is not a "normal" play time. Poor Caleb (good thing he's so young and doesn't know any better), but he has literally only had a few days of his life where we have all been together as a family. It's things like this (and countless others!!) that make it so hard to understand "why?" this has happened to us. I was reading in a devotional book (thank you Amy...it's exactly what I have needed) and I turned back to March 1. This was the day it all began. It was SO good, but I will only write a portion of it:



"Your situation is filled with uncertainty and is very serious, but it is perfectly right. The reason behind it will more than justify Him who brought you here, for it is a PLATFORM for which God will display His almighty grace and power. He not only will deliver you but in doing so will impart a lesson that you will never forget. And in days to come, you will return to the truth of it through singing. You will be unable to ever thank God enough for doing exactly what He has done." (Streams in the Desert)



So, even though we can't fully comprehend the reason behind all this, we CLING to the fact that God loves Caed more than we do, and "He has chosen this special child to do a great work through a tough journey." (thank you Robin for these beautiful words) I prayed for my children when they were tiny babies that God would use them to do great things. Even though it's hard to understand the means by which He sometimes chooses to do them, we can rest assured that this is one of those times that I prayed for!

Saturday, March 29, 2008

Sat. 3/29 - update

Not too much to report today. He has now had the feeding tube over 24 hrs. and is doing better with it. I think he has realized it isn't coming out. He doesn't mess with it, only scratches his nose under all the tape, etc... occasionally. They have increased the amount he's getting to 10 cc/ hr. (not much at all) Dr. G said he was a little anemic, and might possibly give him some blood tomorrow. His temp. has been better today (just low grade). His white blood cell count is ok, so they still aren't sure where the fever is coming from (possibly just something he's caught from being up here). He had a good afternoon in particular. Grandaddy found lots of money in his ears, and he really liked that! They also had a good game of "potty basketball." (you can't imagine how creative you have to be when you've been here as long as we have). Things are still just going very slowly. We are trying small amounts of food again, so hopefully we will see progress there. He has been in very little pain today and the throwing up is MUCH less!!! (no more bile.....yea!) So, the main prayer request now is him being able to eat and KEEP IT DOWN!!!! We love you all and thank you for your prayers, visits, cards, emails, posts, gifts, etc...... We continue to be overwhelmed how the Lord is using you all to minister to us during this time. What an awesome picture of what the body of Christ is supposed to look like.






Friday, March 28, 2008

Fri. 3/28 - am update

The scope went well. They said the suspicious part of sm. intestine they were worried about looked fine. She said it was a dark blue color and things were flowing through it. It possibly was just contracting when they did the upper GI the other day. Although they don't know for sure. Dr. Higgins did go ahead with the nasal feeding tube. It goes all the way down into part of the sm. intestine. They will first start it out slow (almost like baby formula), then hopefully progress more. Caed was NOT happy when he came out of anesthesia. They had a big oxygen mask (covered his whole little face) and of course the nasal tube. He has been crying wanting it gone! They said that will be our main focus: keeping it in!! Anyway, for now...we will just try this and see how things go. Thanks for your prayers (at ALL hours of the day and night)!!!!!!!!! The Lord's presence is here in his room, and we know he has Caed in his arms!

Thursday, March 27, 2008

Thurs. 3/27 - update

This morning started out pretty good. He was up from about 3am on...sleeping sporadically. Finally at 6:00, he told me he wanted to ride in his wagon. I told him it was still dark outside and everyone was asleep. But, he insisted. So, we rode through the halls and across the sky bridge. It was a neat time because it was so quiet and we were the only ones "out and about." Later that morning, he began laughing and being Caed! He was playing basketball with his stuffed animals (the goal was the trashcan!) He was being so silly and we had a good time laughing at each other. It was short lived and the pains and throwing up started back up. He did however get a 3 hr. nap this afternoon. I know he was exhausted! This evening ended very good though. My parents and Reagan came up and he had lots of fun playing in the playroom, running through the halls, and even eating a few bites of ice cream. As I am writing this, he has gone 6 hrs. without having any pains or throwing up. (a HUGE change!!!!) Please pray that this continues through the night!! We got the results from the upper GI today. It didn't look good. It's hard to describe, but basically there is a small section of sm. intestine (5 inches) that looks like a piece of string. They are not sure whether it is just constricting or a partial obstruction. The dr. said it's a straight shot, so it should be easy to get a good look. If it is an obstruction, they will more than likely take him back to surgery tomorrow!! We don't know details of what the surgery would entail, but obviously we would be taking MANY steps back. It was so good to see him "normal" tonight, but hard thinking we may not see it again for awhile if he has another surgery. I know we say this over and over, but we feel it so strongly. We obviously pray for complete healing in Caed's body and desire more than anything for there not to be a 3rd surgery...BUT we also believe he is in God's hands. There is nothing that has happened or will happen to him that is not in God's control. Like I've heard my dad talk about this week, "Lord...YOUR will be done, not mine!" That is an incredibly difficult thing to say, but we know that God is using ALL of this for Caed's good (and ours) and HIS glory!

Monday, March 24, 2008

Wed. 3/26 - update

Today again was filled with lots of pain! He just generally felt very lousy all day. Still running a low grade fever. They are doing a blood culture just to make sure there is no new infection looming. They did go ahead with the upper GI this morning. Poor guy....when we entered the room, he saw the dr. and said, "I don't want that drink!" However, they gave him the chocolate version this time, and he drank it better. We could see it moving fairly quickly through the stomach and then once it hit the sm. intestine it just stopped. (or slowed down greatly!) Throughout the day the x-ray tech came to our room to get more pictures. The last one will either be late tonight or in the morning. So far, they said it is moving faster than it did the first time. (although still very sluggish, and they could still see the barium from the LAST test still in him). BUT...we will take this good news and praise the Lord! IF they see that there is no obstruction, they want to re-scope him sometime later this week (to make sure things still look ok there), and also will insert a nasal feeding tube. (he will be under anesth. so that is a blessing) This tube will go directly to his stomach, and they said sometimes this helps to stimulate the digestive process. Right now he is getting his nutrition (TPN) intravenously. So.....there are a lot of possibilities coming up, but again depending solely on what the GI series show. Last time he had this done, the results were not very clear. Please pray for clarity in the x-rays and wisdom for the drs. for the next step. One nurse told me that Caed wasn't "following the rules" with the condition that he has. The drs. have been having to shoot from the hip with him. We have been very pleased with ALL of his drs!! We trust wholeheartedly in their decisions, and know (from things they have said) that he is a top priority on their list. Another prayer request would be concerning Todd. He drove back to Celina Mon. night. The church is being SO supportive with his absence; however, he just feels he is getting behind. This week was very tough with him being gone. Not only has Caed not been doing well, but I have had to take on double-duty (with the help of my dad) at the hospital. It has been draining! I know it has also been extremely hard on Todd not being here and feeling helpless where he's at. We already have 2 weeks of flights scheduled for him to travel back and forth, and we are finding a system that allows me to leave the hospital for 4-5 hrs. each evening to get a little sleep. The Lord is providing in areas where we need it, but we are just seeing how much more difficult it is when one of us is gone. Thank you AGAIN for your continued prayers!!!!!!!!! We're going to get through this!!!

Tues. 3/25 - update

Well, we seem to be developing a pattern here. Good day, bad day, good day....... and today was a bad one. He started about 2 am having the severe pains and throwing up. That lasted pretty much all night and morning. Our guess is the little bit of food he had yesterday might be the cause. ??? He was in pain the whole day, and threw up 7 times (so far). I really struggled with taking him to the park. However, he kept telling me (in between cries of pain) that he DID want to go. Even his walking was so different than it has been in recent days. He stayed hunched over and took tiny little steps. Putting him in the van was so emotional for me. Oh, how I wanted to drive past the park and keep going and going. Seeing him sitting in the back seat (in his sweat pants and tennis shoes) was too much! It all looked so normal, yet I had a VERY sick little boy riding with me. Knowing that if we never went back to the hospital, he would probably die. When we got to the park, he slowly made his way over to the rest of the group (my grandmother, Megan, Xan, Reagan, and my mom). At first he just wanted to lay down on the blanket and pillow. He looked so weak! Finally, he decided he would sit in a swing. Then, later we got out the jeep and he, Reagan, and Xan drove it around awhile. The whole time he never once smiled or said a word. We stayed for a little over an hour , and finally he began crying saying he wanted to go back. The minute we got back to his room, he threw up again. I know it was good for him to get out, to see something new, but I just hate that it was on a "bad day." I'm sure the drs. will give him more passes. Hopefully next time he'll be able to enjoy it more. The main report from the drs. today was: they took him off ALL his antibiotics (he's been on 3 heavy duty ones for 3 weeks now), they said sometimes they can cause nausea, so we'll see if it makes any difference (don't think so, but it's probably good for him to get off some of the meds regardless), also they want to do another upper GI sometime this week (possibly tomorrow). They are not sure if there is just some "mechanical" problems or if there is an obstruction. Again, time should reveal it. ???? Thanks for your prayers today. Even though park day didn't go so good, it was a blessing to just "get away" for awhile. The Lord spoke to me throughout it.....the music on the ride over was uplifting, seeing other "normal" children playing so carefree and realizing it is a BLESSING that we all too often take for granted, and looking forward to the day (with hope!!) that Caed will be riding in that back seat again with his tennis shoes on and knowing we CAN drive far, far away!





Mon. 3/24 - update

We had a really good day today! He was in much better spirits. This morning when the drs. came in, they said "waiting" is the plan for now. They also agreed that this little boy needs a break from the hospital. They are giving him a 2 hr. pass tomorrow to leave!! There is a park nearby with a playground, lake, and ducks. It's supposed to be a beautiful day. Reagan is also getting to come. When we told him about it, he said, "No...I don't want to go!" As much as he hates being in the hospital, that bed has also become great security for him. Any new thing we try he totally opposes. Then he sees it's ok, and all is well. Hopefully the park will have the same results. He did GREAT with his walking today (or should I say running). He wanted to be outside a lot and walked all over the place. While inside, there were moments he was "running" through the halls. Reagan came up and stayed most of the afternoon/evening with him. They had a good time together just the 2 of them. Caed also ate today!! (sm. amount of apple sauce, milkshake and goldfish!!!) His GI dr. has given him the ok for any foods other than fried or fatty. He did have some pain spasms tonight; those bowels are hopefully trying to move things through. Please pray that our "park adventure" tomorrow is a good, positive, helpful time. I know God can use his creation as the BEST therapy!!

Sunday, March 23, 2008

Easter Sun. 3/23

He is risen! He is risen indeed!!!!!!!!

Happy Resurrection Day! This was definitely a 1st for us: spending Easter in a hospital. However, it was good, and God was HERE! They took Caed for more x-rays first thing this morning. They were short and easy...thank you Lord! We spent quite a while looking at the results and talking with the dr., but in a nut shell: his bowels are still extremely sluggish (he still had the barium in them from the upper GI done several days ago), but doesn't see any reason to go back in at this point. He said time should reveal any other problems (if there are any). However, he said it will be a group decision, so we'll see what Dr. G's opinions are probably tomorrow. Caed was very melancholy today (kinda like the weather here in Lubbock...cloudy and dreary). My family came up to visit, and we hid eggs here in his room. He really didn't get too excited, just wanted to lay in his bed. He cried several times with pain. My mom read the Easter story, and then my Dad talked about it (using Resurrection Eggs). Regardless of the circumstance, it was a neat time for our family to be together and remember what this day is truly about. Todd's mom came up a little later. Like I said before, it was definitely an Easter first for our family, but a special one we will always remember. Just as Christ defeated death, we know that same power still is alive today! We believe He will also have the victory over Caed's sick little body. Praise you Jesus for all you have done and WILL DO!



Saturday, March 22, 2008

Sat. 3/22 - update

Praise the Lord!!! We had a really good day today! Overall he was in a much better mood, and he smiled, talked, and laughed more. Normally his mornings are pretty good, but it's the afternoons and evenings that are bad. However, he did great the whole day today! He never had any bad pain spells and just seemed overall more content. He walked to the elevator, down to the lobby, and out the door about 15-20 yds. (he wasn't necessarily happy about it...he wanted his wagon) But, we cheered him on and bragged all day about how far he walked. The drs. have been concerned about the fact that he hasn't started ANY food yet. (other than an occasional popsicle) He doesn't want anything!!! (even candy....his favorite vegetable) He told me he didn't want to eat because it would make him throw up. (there might be a little truth to that, but we have to start somewhere) So, today we really tried to "make" him eat a few bites of Jello, milkshake, etc.... He did really good. Our hope is that he will see it's ok and want to try more things. Another big concern of the drs. is the amount that he is throwing up each day. I think that is the main thing they are looking at as far as possibly going back in for another surgery. One dr. said today that there might just be a small "kink" in the intestines. Time could possibly fix it on its own, or "going back in" might be the solution. We don't know. I'm sure by Mon. or Tues. Dr. G (surgeon) will have decided on the next step. Thank you all for praying for Caed. We saw its power today!!! Also thank you for praying for Todd and I. Today was such a needed encouragement for me.....thank you God for renewing my strength!!

Friday, March 21, 2008

Fri. 3/21 - update

O God, You give strength to the weary and increase the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but we who WAIT for You, O Lord, will renew our strength. Isaiah 40: 29-30


As I sit down to write this, my body and spirit are so very weak! I can only speak for myself, but I have definitely hit a wall. We have now been on this journey for 21 days....have had our ups and downs....and now feel like nothing has really changed and we're supposed to just WAIT. That is actually what Dr. G said this morning. We're going to give the new meds a few days and if there's no change, they will consider going back to surgery. We felt so positive a few days ago with Caed's progress, but the last couple have seemed to be steps backward. The mornings seem to be fairly good, but the afternoons and evenings have been filled with pain, etc.... Tonight Caed began having the severe pain spasms again. I know it wore him out because he fell asleep very early. I decided to sneak out while I could (my parents were there and Todd was on his way). My plan is to go to bed early tonight. We have been putting in 14-16+ hr. days/nights (as well as a few 36 hr. ones), and it's really taking a toll. If we were seeing lots of progress, I think it would be easier. However, most everything has stayed the same. We knew from the beginning that a big element to this was going to be TIME!! But, when you're in the middle of it, time seems to stand still. Please continue to pray for healing in Caed's body, but we're also asking another prayer for those of us "living at the hospital." Like the verse says, pray for the Lord to renew our strength as we (patiently) WAIT on Him!!!! He makes ALL things beautiful in HIS time, and we know that HIS timing is perfect. Things that we cannot see....He sees!! He has a perfect plan set before us (one of prosperity and hope), and we do not want it any other way!! Pray that we will not miss a single thing that He is wanting to teach us through this experience. Again, we love you all and THANK YOU SO VERY MUCH for your continued prayers and words of encouragement. We could not make it through this without each and every one of you!!

Reagan & Caleb

Many of you have asked about Reagan and Caleb. They are doing great!! Reagan (7) has been very busy playing w/ cousins, going to movies, swimming, etc... She is truly "on vacation." However, my mom said on Wed. she finally broke down. She told her, "I just MISS playing with Caed," and then she cried and cried. My mom told her it was ok and that we have all cried too. This was the first time for her to get emotional about the whole ordeal. Caleb (6 wks.) is also doing well. Hard for me to say because I haven't been around much. Only get to see him occasionally and for a few minutes at a time. He is growing, growing!! His first month of life is a complete blur. He was 3 wks. old when this all happened. I have struggled greatly when I do see him. It's almost as if he's someone else's baby that I'm holding. I don't know the "tricks" anymore when he's crying, etc... It breaks my heart! However....there is also GREAT comfort and peace in my heart. My grandmother and sister-n-law, Megan, have truly become his other "mommies." They are with him 24/7. I know he will not remember any of this, but Todd and I will!! But just as the Lord is getting us through the ordeal w/ Caed, He will also get us through this time of MISSING our 2 other children!!! How we long to be back together as a family again!!!




Thursday, March 20, 2008

Thur. 3/20 - update

Today started out very good. I brought Reagan up to the hospital with me this morning. The Children's Hospital was having an Easter party at 10:00 in one of the playrooms, and I thought Reagan and Caed might enjoy being there together. He was SO happy to see his sister again! The party went well, and he hunted lots of eggs. He wasn't able to bend down to pick them up, but he would let Daddy know when he spotted one. The "Easter Bunny" was also there, but Caed wanted nothing to do with him. Throughout the party he kept asking me, "What if I throw up?" We assured him it was ok, and that we had all the necessary "items" in case he did. He got tired during it and wanted to sit down in front of the aquarium to watch the fish. That didn't last long either, and he was ready to get back to his room. Once there, he DID get sick. Poor guy, I know he is getting tired of throwing up so much. HOWEVER.....we have noticed a huge change there. Instead of every 2 hrs., he is now up to about every 4-6. He started his new meds for the ulcers, and we also have been staying more on top of the nausea med. (one of those, if not all are really helping in that area) The GI dr. said the biopsy they took of the ulcers came back negative (meaning they were not caused by a bacteria). He said these were "stress ulcers." Not in a way of being "stressed out," but rather your physical body going through a MAJOR trauma and it being greatly stressed. They also said the meds should really begin making a difference. (I think we are already seeing it) This afternoon however, Caed was really in a lull. He was very whiny and didn't want to do anything (go for walk/ride in wagon, etc...). He just seemed extremely sad! He had such a fun morning with Reagan and his cousin Haylee. I'm not sure if sometimes there is a big let down after he has had a fun, good time. Those things or people eventually are gone, and he is still stuck there in that room (alone). We are thinking about bringing Caleb up to see him tomorrow. Again, it's one of those things you know will make him SO happy and yet SO sad. (he hasn't seen him in 3 weeks!) The drs. are still not giving us any time frame in how much longer we'll be here. It literally is one day at a time. His surgeon told us yesterday that we would give these new ulcer meds 3-4 days, but if the pain spells he's having continue to be intense, we would consider another possible surgery. Right now, we are seeing a change in Caed as far as the pain and also the frequency of throwing up. They are not gone, but definitely LESS!! We are optimistic and are praying things continue to only get better. PRESSING ON............!!





Wednesday, March 19, 2008

Wed. 3/19 (am) update

Praise God!!!! We got good results from the scope this morning. He has several ulcers in his esophagus and 2 bigger ones in the stomach. Treatable with medicine!!!!!! They took a biopsy, but we're not too concerned that anything will come from that. They will begin some heavy-duty medicines through his IV, and also another that he will have to take for several months. This was such an answer to prayer! (one of the few times you HOPE they find something during a procedure like this) Thank you ALL for praying for Caed on a daily basis, but specifically for the scope this morning!! There was such a calm, peaceful presence when we entered the endoscopy room. They had the radio on a Christian station, and it was playing "More Than Enough." Todd and I sang along to Caed, and it was a small, simple reminder the Lord gave us that HE is here, and HE truly is MORE than enough that we need. Caed's dr. will come by later this evening to discuss what they found and I guess the next steps from here. We just pray the meds start working quickly, and there are no more post-op problems. He still is in a lot of pain (1/2 of which is not ulcer related), and also still throwing up bile every couple of hours. Hopefully, he will get some relief SOON!!!!!!!!

Tuesday, March 18, 2008

Tues. 3/18 (am) Update

Just a quick update for today: the dr. came and gave us her "new plan." They will go in tomorrow morning with a scope (he will be under aneth.), and will be looking at his stomach primarily. It was very involved in the whole volvulus (twisting bowel) in the beginning. She said he may have developed a severe case of gastritis (?). All his numbers (cell counts, electrolytes, no fever, etc....) are looking very good however. IF he does have this, they can treat it w/ medicines. IF NOT....we will be looking at another surgery by the end of the week! PLEASE PRAY with us that it is gastritis!!!!!!!

Monday, March 17, 2008

Mon. 3/17 - update

Today started out very good. When I got to the hospital this morning to relieve Todd, he and Caed were shooting dart guns (at Mama of course) and having a fun time. You could just see relief on his face. It was so good to see his smiles again! We went for a walk to the elevator and Caed rode in a wheelchair as we went on a tour of the hospital. We took him by the cafeteria, chapel, and gift shop. (what an exciting trip!! ha!) We just thought he'd like to see something different. (he wasn't too impressed) He had some "special" visitors today, the Owen's (neighbors across the street in Celina), and Reagan and his cousin Haylee. He smiled so big when they came in the room (all 6 girls)! I know he enjoyed so much seeing them again. After they left, things began getting worse. He had more pain spells, but also suffered quite a bit today w/ anxiety. I know he is sick to death of that bed, the hospital...everything about it! Even though he doesn't feel well, in his mind I know he just wants things to be back to normal. He also threw up quite a bit more today. Normally it's about 2-3 times.....today was 7. When Dr. G came by this evening, you could tell she was a little concerned about that. Caed is only taking a few sips of juice or water each day. He can't even keep that down. But, primarily it's bile that he's throwing up. His dr. said she would give it 2 more days. If the throwing up is not better....she was going to "come up w/ a new plan." That scares me to think what that means. Obviously his digestive system just isn't working. Nothing is being able to go all the way through. That's our prayer now. Please pray things get better in the next couple of days....that the throwing up will lessen...and that the bowels will "start moving!!" (and of course for him to be in less pain) We had a couple of a good "fun times" with Caed today where he smiled, laughed, and was his old mischievous self (w/ the dart gun). They are such precious moments to us! We cling to them and pray we continue to see more and more. Oh, how we MISS that funny personality of his!! Overall, like I've said before, he is one sad little boy. (just so opposite of the real Caed) Thank you again for praying with us! We love each of you and are so grateful he is being lifted up by SO MANY on a daily basis.

Sunday, March 16, 2008

Sun. 3/16 - update

Well...what can I say, the last 24 hrs. have been extremely difficult. Caed was in pain constantly! They gave him med. for it, which only knocked him out. So, if he wasn't sleeping, he was crying out in excruciating pain! We really became worried b/c it reminded us of how he was doing the day this all happened. Dr. Goldthorne (surgeon) ordered a cat scan for this morning. Poor little guy... being wheeled off AGAIN to some strange place was hard for him. He told me (in between cries of pain), "Mama, I'm scared." I rode up on the gurney with him which helped a little. It was the longest afternoon we've experienced. Just waiting for the results. If it was the sm. intestine again, that would be devastating news b/c he can't loose much more or it could be fatal. All I prayed for was "Please let it just be GAS PAINS!!!!" (as bad as those are, we can get through it) Finally Dr. G came back and said she could see lots of air pockets throughout the bowels and also a big one in his colon. Thank you God!!!! She ordered a heavy duty suppository and said it should help to relieve some of it. Meanwhile, he threw up LOTS of bile!! The air was causing everything to get backed up. After about 45 minutes with the suppos., we had a party!! ha! (it worked) Afterwards he just lay calmly in the bed (something he hasn't done the last couple of days). We still haven't gotten a smile, but hopefully this will continue to work and we can see our Caed again. He continued to have some pain spasms, but they weren't nearly as severe. We pray things only get better from here!

Saturday, March 15, 2008

Sat. 3/15 - Update

Today was a pretty rough day. Caed was in a lot of pain! We started Demoral again and also some med for anxiety. He slept on and off from 2:00 - 10:00 pm. I know his little body needs the rest. He hasn't been getting any the last several days/nights. We really were concerned today just b/c it seems like he isn't getting any better. However, after talking with the dr., we are reminded that he may be at the peak of the pain (as the bowels are waking up more). She wants to do a cat-scan tomorrow to take another good look. They finished the last of the x-ray series (that they started yesterday) this afternoon. What they determined was that his bowels are extremely sluggish. His dr. told us he is progressing more than she thought he would be at this point, but yet that his bowels are still very sick. It's just going to take time. She said he is also experiencing a classic case of "hospitalitis." This child is extremely sick of being here and basically being bed-ridden the last 14 days!! The smiles that we had seen and loved are now gone. If he is not hurting in pain, he is whimpering w/ sadness. Pray not only for his body, but also spirit as they are both very weary.

Wednesday, March 12, 2008

Fri. 3/14 - Update

Not a lot of change today. This morning the dr. ordered an upper and lower GI. The pain spasms he is experiencing are normal, however they also want to make sure nothing else could be causing it. (more blockage in intestinal wall) We went down to radiology and struggled to get Caed to drink "the drink." (who could blame him) He only got 4-5 sips down, but the dr. was very good to him and said it was ok. They got a few x-rays, but sent us on back to our room and said they would bring the "portable machine" throughout the day to finish the x-rays. They were tracking "the drink" through the intestines, but said it was going really slow. The last one (hopefully) was this evening. We are praying they got what they needed. It was a very stressful morning waiting down in radiology. Just the thought of something else being wrong and then another surgery was too much! As Caed lay there on the table, we prayed. Just as the Lord knit his little body together in my womb, His hands are still there. I prayed for the x-rays to come back completely normal....so much so they would baffle the doctors. A song also came to my mind sitting there in that dark room in the basement of the hospital. Again, those of you who know Caed well enough know that his favorite song is Blessed Be Your Name (or Yes'm be the Name....as Caed calls it). If it comes on the radio, he wants it as loud as it will go. Or, he will get on his drums or guitar at home and play and sing at the top of his lungs. He knows every word. It has been SO fitting throughout the past 2 weeks. As hard as it is to walk through the "darkness," we know that God is still on His throne, He has the world in His hands (including our Caed), and HE is Worthy!! (not just in the good times) We trust Him and know that regardless of what those x-rays are going to show tomorrow, HE KNOWS BEST!!!!

Blessed Be Your Name
Every blessing You pour out
I'll turn back to praise
When the darkness closes in Lord
Still I will say
Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name
Blessed be Your name
In the land that is plentiful
Where the streams of abundance flow
Blessed be Your name
Blessed be Your name
When I'm found in the desert place
Though I walk through the wilderness
Blessed be Your name
Blessed be Your name
When the sun's shining down on me
When the world's all as it should be
Blessed be Your name
Blessed be Your name
On the road marked with suffering
Though there's pain in the offering
Blessed be Your name
You give and take away
You give and take away
My heart will choose to say
Blessed Be Your Name!!!!

Thurs. 3/13-Update

We could sum up today in 2 words: PAIN and SMILES!!! We have really noticed the pain spells to be much more intense in the last 24 hrs. They last anywhere from 5-30 minutes. This morning the dr. came by and said he could start juice today. That has been the one thing that he has wanted since this whole thing happened. Even minutes before that first surgery, he was crying for juice. When the dr. told him this morning, a great big smile came across his face! However, he can only have a tsp. every 10-20 minutes. We're needing to take it very slow to see how his body reacts to it. So far, he has done fine. We kept a very detailed log today tracking EVERYTHING!! We don't think the juice is a cause of the pain spells or vomiting. They were happening before. They ended up not doing the blood transfusion today b/c his red blood cell count was the same as yesterday. However, his surgeon said they may give him some tomorrow and that will help to perk him up. She also told us it normally takes the bowels 21 days to really begin functioning.....we are on day 8 (counting from the 2nd surgery). Caed is doing SO much better with his walking. We don't have to hold his hands now, although HE wants to. Today he walked to the playroom!! (big achievement) We even went inside and he saw a big truck that he wanted to drive. Again, another big moment, as he has not wanted to do ANYTHING!!! We also put him in a wagon and were allowed to take him outside twice today. I know the fresh air was so good for him. Another change today was taking him off his nutrition bag (liquid food) for 6 hrs. at a time. It made it so nice to walk or ride in the wagon without having to drag along the pole. The plan is 18 hrs. on the IV, 6 hrs. off. They also took him off his pain med (Demoral). However he is getting Motrin and Tylenol regularly. (which don't really do much) It was a very hard day for Caed physically. He didn't get much rest. We are posting these pictures of Caed to share with you our recent "joy moments." Like our good friend Greg (aka. Jack) said, they show the power of prayer in a single smile!!! Oh how true that is!! Thank you God for them! However, we also want you to realize 80% of Caed's days are spent in pain.....these happy moments are so few and are scattered throughout the bad ones. Please continue to pray for him! There is nothing we can do to alleviate the pain when he's having a spasm. We basically just have to wait it out. It is very difficult to watch, and you want so badly to take all the pain away and carry that burden for him. Our prayer now is that the spasms become less frequent and not as intense. He is one tough little boy and it's so hard imagining all that he has and continues to endure. Something that I have been speaking over Caed throughout this whole ordeal is "JEHOVAH-RAPHA." (which means THE LORD WHO HEALS!!!!) We ask that as the Lord brings Caed to your mind, you would also join with us in speaking His Name!!! We have already seen his healing power and have faith that He will continue.





Wednesday 3/12 - update

Well...back on that roller coaster!! Today wasn't a BAD day, but it definitely wasn't as good as yesterday. The drs. decided to pull the NG tube out of his nose this morning. We had mixed feelings about it. On one hand, it's one less thing he's hooked up to, but they had tried to pull it several days ago and his tummy wasn't quite ready and they had to reinsert it. So...we're just praying this timing is better and his body does ok without it. He did have several episodes of throwing up, but I'm not sure it would have been different if the tube was still there. Our "high" moment was when Reagan came to visit. Todd and I had decided that when they removed the nose tube, Reagan could come see him. (we were afraid it would scare her too much) He is of course hooked up to lots of other things, but since the port is coming from his chest it's easily covered up. They were SO excited to see one another. They truly are friends, and have missed each other terribly. As you can see from the pictures, it was the highlight of the day!!! However, it was short lived. He seemed to struggle a lot more today with pain and anxiety. If you are a hospital employee (of ANY kind....even the housekeeper), you will surely cause this little boy's blood pressure to rise when you open the door. He's done ok so far (as much as you would expect from a 4 yr. old), but for some reason today was not a good day with the nurses and drs. I'm sure he's getting real tired of being poked and looked at all day from SO many different faces. His surgeon said his red blood cell count was a little low, so they will do a transfusion tomorrow. Other than that, nothing new from them. We did 4 walks today, and the last one was done with very little crying. (we kinda bribed him that if he didn't fuss, he wouldn't have to go very far) We're going to have to come up with a new plan tomorrow b/c the goal is to increase the distance each day. ha! He also rode in a red wagon down the hall to the playroom. We didn't go in, but he just got a good look at where he's going to play REAL SOON! Thanks for the continued prayers!!!! Keep them coming!

Wednesday Pictures

Resting hasn't been a regular occurence so when he does we are so thankful.....even if it is induced.

This was a major moment for us.....we saw our Caed return for the first time in 11 days. He smiled and laughed and wanted to shoot Nana and Granddaddy with his new gun. We were all laughing and crying for this blessing.

Here is Caed's reaction to seeing his big sister for the first time since being here. She was just as excited and provided great therapy for her brother.

They were so happy to spend some time together and it was wonderful to see him so active and full of life.

We had tried to convince him to blow bubbles for 7 days (they are breathing therapy) and Reagan was here 30 minutes and had him getting after it. We were all excited.




Tuesday, March 11, 2008

Tuesday 3/11 - Update

Today was a much better day! The highest his temp reached was 100.9. He just seemed overall to feel better. We still had our moments of pain and vomiting, but he was more relaxed today and watched lots of cartoons. The drs. have been wanting him to blow bubbles or a pinwheel to exercise his lungs. He did it once in ICU, saw that it hurt, and hasn't been interested since. We can just say the word "bubbles" and he lets out a cry. However, today I thought I would get them out and blow them myself. (just to get his mind on something different) One time a few floated above his bed and all of a sudden he reached up and grabbed one. (it really shocked me b/c he doesn't like using his arms/hands for anything) After he popped the bubble, he smiled the biggest smile ever!! Then he began LAUGHING!!! Again first time we've seen or heard that in 11 days. It was such a wonderful moment!!! Thank you God....we needed to see that precious smile again. He pooped again twice today which was wonderful, however the drs. seem more concerned with him passing gas. I know that is a strange prayer request, but specifically that is a great need for him right now. His x-rays came back basically the same which the dr. said was ok. She said it was going to take time. Caed walked twice today and this time it was ALL the way down the hall to the window. He did great!! (even though he didn't like it) Our goal is to eventually get around to the playroom!!! Maybe someday very soon! Thanks for your prayers. We have been encouraged today. Hopefully he will have a good night for Daddy and Grandaddy (the "night shift").

Monday 3/10-Update

I guess this is what the drs. and nurses are meaning by a roller coaster ride. Yesterday was a good day, and today was not. He went in for his surgery early this morning about 7:00. (Todd even got to ride on the gurney with him to the OR holding room!) The surgery lasted a little over an hour and the dr. said he did just fine. However, after he got back to his room and the anesthesia wore off, things started going downhill. He ran fever the entire day! His infection drs. said he did have an infection, but not yet sure what kind. They said it was more than likely a fungus or viral. (but not even certain there) The fever could be a symptom of "something else." Caed struggled again with pain a lot today(always), and also the occasional throwing up bile. We did get him up out of bed to do his dreaded daily walk. He went to the hallway again and touched the wall of the nurses' station. He cried the whole way (as well as his Mamma), but was rewarded with a Batman when he got back to his bed from one of the nurses. (which he didn't care a thing about...I don't think all the toys in the world would be incentive enough for him right now w/ his walking) Maybe someday!! Only minutes after we got him back to his bed, my phone rang. It was Caed's t-ball coach in Celina informing me of his first practice tomorrow. All I could do was cry! Caed has been looking forward to playing baseball for so many months now. And those of you who know him, know what a good little athlete he is. We couldn't wait to see him out there playing on a "real team." Maybe it wouldn't have hit me so hard if I hadn't just witnessed his struggle to even walk a few feet. Again....I know the Lord is going to bless us with future ball practices, and I can promise you I won't take any of them for granted. We also learned today that he does have some pneumonia, but at this point seems under control. We never were able to talk with his surgeons (they say Mondays can be crazy in the OR), but I'm sure they will come by sometime tomorrow with the latest prognosis. I know we will continue to have up and down days, but you sure aren't prepared enough for the down ones. It just feels like such a step backward.

Thank you again for your sweet cards. I cried tonight reading them and being reminded again of ALL the people praying for Caed. (and especially from those we don't even know!) Thank you sweet Cubbies!!! I know Caed will love looking at all the hearts from his friends. Thank you also for your emails. We may not be able to reply to them right now, but please know how much we appreciate hearing from you. We love you all! Keep praying!!!

Monday, March 10, 2008

What Actually Happened?

Several have asked us what happened so here is the account:
Last weekend Todd, Caleb, and I drove to Lubbock/Idalou to pick up Reagan and Caed who had been staying w/ grandparents for a week. Caed had been fine, no problems, no tummy aches, etc... Our plan was to head back to Celina Sat. around 2:00. Todd and I were getting ready to load the van around 1:30 when Caed came to me and said his tummy hurt. My first thought was "oh great, he's getting the flu!" He threw up a couple of times and then began REALLY crying out w/ severe stomach pains. This went on for about 30 min., and by the look on his face we decided it was serious enough we needed to bring him into Lubbock to a clinic. (I was wanting to avoid the ER thinking it would be FULL of flu patients) We went to Grace Clinic and they ran several tests and x-rays and were very concerned. They told us to head to the hospital immediately. Once there, the drs. were very puzzled. His #'s were coming back extremely serious (kidney failure, etc...); however they didn't know why. Finally, the surgeon decided we needed to do emergency abdominal exploratory surgery. The surgery lasted about 3 hours and she came out and said he had a condition known as a volvulus (twisting of the bowels). Blood vessels were also wrapped around it which had caused the internal bleeding. She took out 50% of his small intestine (which was "dead") and also a sm. portion of his lg. intestine plus the value that connects the two. She said it was a very serious condition and we were "lucky" (we say BLESSED!!!) that we got to the hospital on time or it more than likely would have been fatal. Had this all happened a few minutes/hrs. later we would have been on the road somewhere in between Lubbock and Dallas. Thank you GOD that YOU ARE IN CONTROL!!!! Caed went straight to ICU with a ventilator and all. (again...VERY hard for Mamma and Daddy to see) By Wed. the drs. were concerned and decided to go back to surgery to see if there was more "dead bowel." That surgery again was about 3 hrs. She had to take out more small intestine. Since then, we've continued to be in ICU and literally each day was a roller coaster. One minute he would be showing signs of improvement and the next a step backward. It was very difficult, but the drs. kept reminding us he went through a MAJOR ordeal and that it is just going to take time! We have seen God's hand in this from the beginning: the fact that we were SO close to being on the road, that we were HERE in Lubbock where all our family/friends are, Todd's mom lives down the road from the hospital, my parents/grandmother/sister-n-law have been taking care of Reagan and Caleb (doing newborn night duty!)/Reagan is homeschooled and has all her work here so is not getting behind, etc.... We could go on and on at all the ways the Lord is taking care of even the tiniest details. Todd and I have been able to solely concentrate on Caed and not having to worry w/ parenting 2 other children. They are in GREAT hands! Reagan is doing fine. She has not seen Caed since it happened. We think with all the tubes going in him, it might really scare her. They have talked on the phone a couple of times (mainly Reagan doing the talking). My dad took over school duty last week; however he laughs that they mainly worked on P.E. and arts/crafts. She has a cousin that lives close to my parents and has LOVED getting the extra time to play w/ her. She is doing very well, although I know deep down she is worried about her best buddy, Caed. Again, thank you all for your prayers! We have felt them, and are amazed at how he is being prayed for all over the country and even world (Jonathan in Peru...thank you!!). We have never experienced an outpouring of love and support like we have through this. Thank you God that you use the storms of life to show us PEACE!!! A pastor friend here reminded us of the verse that God has CAED engraved in the palm of His hand!! What a beautiful picture and we have seen the reality of it through this event. This boy is going to have an awesome testimony one day and we know God is using this all for the good of Caed (and us!) and ultimately for HIS GLORY!!!

March 9-Sunday

Today was a better day. They seem to have a good hold on the meds. No more reactions. He rested more today (45 minutes at a time). He is still having pretty bad pain spells and wants us to rub his incision. After someone who just had a c-sec I'm amazed at that one!!! Probably more a pyschological thing for him. By the way, he has lost his belly button (those of you who are familiar with Veggie Tales know Caed will have a new song....ha!) His incision is probably about 5 inches vertical on his abd. We also had a GREAT celebration b/c he pooped twice!!!!! Praise God!! The drs. were so excited to see that. His bowels are slowly waking up. His surgeon came in and said that she wants to replace the port in his groin with a broviac catheter. That will require another surgery (scheduled for 7:30 Mon. morn). It will be in his chest. She said b/c he's going to be on antibiotics for quite awhile this is the better option. The port he has now has a large chance of getting infected. He also had a big day walking: he went from his bed to the hallway!! He hated every minute of it, but we encouraged him all the way. They were going to try to get him to do it one more time before bed. Also, the biggest milestone for me was HE SMILED for the first time in 8 days. I told him our church in Celina sent a big box in the mail and it was filled with cards, candy, snacks, and TOYS!!!! The smile was short, but oh so sweet!!!!! My dad and Todd have been taking the night shift with him, and my mom and I have been staying the days. Hopefully this system will work better and we can get a little more rest. Thanks again for your prayers!!!!

Sunday, March 9, 2008

Sunday Morning

We had a pretty bad night in ICU last night. They had to put the NG tube back in, and also were not able to take out the port (he was too dry). The catheter is the only thing that has stayed out and he has urinated several times on his own which is GREAT! He was having some severe reactions to some of the drugs. (very hard to watch!!) Anyway, finally around 3-4 this morning they had him stable enough to move to a reg. room. He now can look out a window!!! Still having a rough day today though. His NG tube is not working, so he's throwing up bile pretty consistantly. They've also given him some anxiety med. to calm him down a little (he's just been in constant pain). He walked this morning from the little couch to his bed and they will try to get him to do that a couple more times today. The dr. said the x-rays are looking a little better, but again it will be a LONG road. They said the last case like this they saw (volvulus), the child died! Again, we are counting our blessing and thanking God for sparing our son. He was very close!!! We now have internet connection up here in his room, so I will try to keep you all updated daily.Thanks again for praying!!!!Lori

Saturday Update

Here is the latest:
He's had a bad 48 hrs. filled w/ lots of pain...only sleeping 15-20 min. at a time. Todd and I have been rotating staying up with him during the nights. It's been an exhausting several days. They began getting him up out of bed and to a recliner on Thurs. Again, very painful and he just cries. But, we know that it is part of the healing process for him. (as much as we hate it) Just talked to Todd and sounds like they are trying to be a little more aggressive today: they just took the NG tube out (going down nose to stomach to continually pump out "stuff", took out catheter (which they tried Thurs. also but had to reinsert b/c he couldn't go to the bathroom by himself), and also are moving IV's, etc....back to arms (has been a port going through his groin) This will hopefully allow him to be more mobile. Todd said he has thrown up several times today b/c the NG tube was taken out. It was doing all the work for him, so now he'll have to get all that junk up by himeslf. The plan right now is to try to move him to a room tonight!!! Thank you God!! They have just given him some "sleep med" so they can take the port out. Not sure how much of that he will feel.He still has such a long road ahead of him, but we are SO thankful for the progress. He is still in lots and lots of pain, so pray that the Lord will relieve some of that and he will finally be able to get some much needed rest! He is such a trooper. The drs. and nurses have commented over and over how brave he is. (which has kinda been a downfall, b/c he won't admit when he is hurting)

Thank you ALL for EVERYTHING you have done this past week! We truly have been overwhelmed!!! It has been a picture to us of how the Lord is taking care of us through the BODY OF CHRIST!!! You all have been the vessels He has used. You will NEVER know what it has meant!! The surgeon who has been with Caed from the get-go told us a few nights ago that she truly thought he was going to die when she saw him Sat. night! As a parent you never want to hear those words, but God is using them to remind us of what a miracle it has been (and continues to be). God has SUCH BIG plans for Caed in the future and we know that this is all for HIS glory!Again, thank you for all the prayers /cards/ gifts, etc.... It means more than you'll ever know! Right now please continue to pray for his bowels to "wake up" and start healing (he lost about 60-70% of his small intestine and a sm. part of large), also for pain to be minimal, for his spirit to get better (he's a very sad little boy), and also for those of us living in the PICU (has been physically and emotionally very draining). We love you all!!!!!!!!!Lori

Caed-bear