Tuesday, March 31, 2009

Luke has caught the "Plague", the horrible, nasty flu bug that has infected our home!

It looks like Luke has caught what we jokingly, but very seriously call the "plague." It began last week with Lily throwing up on Wednesday all day and night. Then Friday morning I being the mom that I am, thought the boys just wanted to get out of doing school when they were both complaining of having stomach aches, little did I know they were both beginning to come down with the plague, they threw up most of the day and night and continued to do so until Saturday morning when they began to get a little better. Saturday morning as we were getting up I went down to wake up the girls and found out that Amy was not feeling well, she had a horrible stomach ache, oh no, we realized that she to had the plague with it's full vengeance.

That day some of us went down to my parents home to visit with some very good friends from out of town. When I got home I thought my tummy was doing some rumbling and was in complete denial that I was too coming down with the "plague" until I began to violently throw up for the entire night, it didn't stop until 7:15 a.m. Poor Gordy was up with Lily throwing up in her bed, Zeke throwing up in his bed, Amy crying that she was in horrible pain, Luke alarming because of his sleep apnea oxygen needs and listening to his wife lose her cookies over and over and over again. You have to understand that I don't throw up often, I think the last time was when I was pregnant with Isaiah 10 years ago, but this flu doesn't care if you hate throwing up, it makes your body do that until you dry heave, not even a sip of water is kept down. I sucked on ice chips until about 5:00 p.m. Sunday when I finally thought it was safe again to try something, ate a small piece of bread and half apple, with a little Sprite. I felt and looked horrible as I had broken massive blood vessels in my checks from heaving so hard. I felt a little better on Monday, but my back was killing me from the ribs I had knocked out during my episodes, therefore went to the Chiropractor to get an adjustment, that helped immensely.

We kept praying that Luke would not come down with this horrible plague, I kept hoping that he was the one to begin it with his throwing up last week right before Lily began, but no he has it full blown. Gordy and I woke this morning to a little guy throwing up, when we went to him we realized that he was literally surrounded in diarrhea, after giving him two bath's to get him completely cleaned up we put him out on the couch with plenty of protection under him. He has continued to have horrible diarrhea, a high heart rate, throwing up, the works all day long. The only praise is that his oxygen levels have not been horrible he has only had to have about 1/2 liter tonight.

I spent the day along with the girls cleaning today, we have bleached and washed any blankets, sheets, clothes that have we have been in contact with, we've also been using dish washing soap with bleach, washing all the towels often, you get the picture, lots of work. As mentioned in my last post Luke is scheduled to get his tonsils out next Tuesday, please pray with us that this flu will not completely knock him out to where he will not be able to keep that surgery from happening. Would you also pray that Gordy and Natalie will not come down with this horrible flu that has been plaguing our family for the past week. I too will pray that y'all will stay healthy from all the flu bugs that are flying around and that you will not come down with the "plague."

Love in Christ,
Luke's Mommy Suzi

Wednesday, March 25, 2009

G-tube Excitement Today at Luke's Doctor Appointment

Luke once again had a very hard night last night, therefore I decided when I got up today I should take him back into the Dr. today. I guess I was thinking that maybe he needed to get going on another round of steroids, the Dr. agreed with me and therefore I'm hoping this is what he needs to get over this round of sickness. When I was lying Luke down on the exam table I started taking off his shirt and realized his g-tube was missing. After looking around I decided that I should run out to the van to see if it was there and sure enough I guess as I was taking him out of his car seat I pulled it out. I grabbed it and and ran/fast walked back into the exam room, washed it off and put it back in. The Dr. was pretty amazed at how well I handled the situation, if only he knew how fast my heart was beating and the fact that I was trying really hard not to freak out totally. I had to change all of Luke's clothes as he was pretty stinky from all his stomach digestion gunk that got all over him. I hope and pray I don't ever have to that again.

Luke's tonsil/adenoid surgery is set for April 7th at 5:00 p.m. I was happy that it got changed from the 11th, but also sad at the same time as this is Isaiah's 10th birthday. We are going to celebrate Isaiah's birthday the weekend before and I will take him out to lunch for our annual Mom lunch, but I'm bummed I will be spending the night at the Hospital on his birthday. I really hope and pray this surgery will fix his desaturation problems during the night that he has been dealing with for the last 2 months.

Lily woke up throwing up today and has continued to do that for the better part of the day, please pray that she is doing better tomorrow and that whatever she has is not spread to others, thank you. I need to get my clock back to sleeping during the night, it has been so hard to sleep while Luke is struggling, but I've have suffered lately from my lack of sleep. I did get a 2 hour nap today, which for me is very unusual, I don't like wasting time on naps, therefore you have to know that I was desperate for sleep.

Love in Christ,
Luke' s Mommy Suzi

Tuesday, March 24, 2009

So Many Prayer Needs, Such a HUGE GOD!

Today is my Mother's Birthday, Happy Birthday Mom! I took the kids down to Olympia to go to lunch with her and some of my other family today. Luke did pretty good while we were there but when we got home he began to get a real runny nose and tonight he is back to not doing so good again. I have him on 2 liters on the nasal cannula and the flow by oxygen going to keep his stats up to where they should be. Needless to say he still needs prayers!

I don't think I ever reported back to you what we found out from his EEG. When I took him into the Neurologist he told me that he saw seizure activity that corresponded with Luke's video taken at the same time. He told me that Luke would go into high tone and look to the right each time and that was a seizure. I told him for years now Luke's right hand is extremely sensitive and if you touch it without telling him or even if he touches his hand on something he will go right into the high tone looking to the right pattern. But if you tell him you are going to touch his hand he will not go into that pattern. The Dr. told me that this was the first time he has ever seen anything like what Luke is doing. I could tell he was stumped, in fact he asked me if it was ok to share this with some of the other Dr. in the office to see what they thought, I said that it would be ok. Needless to say he wanted to put Luke on Keppra, which is a seizure med, but I've heard about Keppra and it has bad side effects, so I told the Dr. that Gordy and I would talk about what we wanted to do. We have decided to wait until Luke gets his tonsils out to see if that helps with the seizures, since we think they are partially related to his oxygen deprivation problems.

We have scheduled Luke to get his tonsils out on April 11th, not the date I would of chosen since it is the Saturday before Easter, but it is the first available date the Dr. has. Therefore we will most likely be in the Hospital on Easter again this year. Though we will see if it actually happens, I'm pretty sure he will need to be healthy to do this surgery, they just postponed his Botox injections, which should of happened today because they didn't want to sedate him while he is not healthy. So much going on, so many appointments, so many Doctors, I'm hoping and praying that as soon as he get's his tonsils and adenoids out he will get healthy again and stay that way for a very long time.

So many people need prayer right now, I almost feel bad asking y'all to pray, but I know that we serve a HUGE GOD who can handle all our prayer requests. Here are some urgent prayer requests: Sadie Belle,
Baby Mia and Samuel Lockwood, they all need prayer for more information please check out their blog sites, they are listed in Luke's Prayer links.

Love in Christ,
Luke's Mommy Suzi

Sunday, March 22, 2009

All About Luke! Update, Birthday Pictures and a Video!

Luke is still sick! Gordy and I were talking this morning about how horrible last night was. One of us were up at least 4 to 5 times every hour all night long, I said to him that's why I don't go to bed at night, I hate having to keep jumping out of bed. It was his oxygen levels, then his heart rate, then his food pump, then his oxygen levels, then his heart rate, then his oxygen levels, then his food pump, you get the picture. . . Luke is on Augmentin which is a pretty strong antibiotic, I think it has helped some, at least what he is coughing out is no longer yellow.

I was so hoping that we would all get to church this morning, but I didn't wake up until 9:25 after finally getting 2 straight hours of sleep. Luke is on lots of oxygen, the nasal cannula and his flow by. I'm going to go get him into the bath and am hoping that will help perk him up a bit. This journey has become almost impossible to continue on lately, I realize that is not faith talking. We need prayer more than ever, prayer for Luke to get better, prayer for strength and sleep, prayer for our hope to be renewed, prayer to stay strong, prayer to continue to trust God in our circumstances, prayer to be able to thank Jesus for the good days and the bad ones, just lots of prayer.

Here some pictures from Luke's birthday: The family helping him celebrate, Luke has just tried some frosting and seems to think maybe he likes it, Luke is riding on Daniel, who is pretending to be an elephant and finally Luke is whiped out after all the excitement.

Here is a video of Luke on his Birthday, at the Children's Therapy Unit with Eric his OT. He was doing so well that day touching that purple pad, which is a switch that will turn on a electronic toys and this day he was turning on the music.

Did you enjoy the pictures and video, please let us know, we love comments!

Love in Christ,
Luke's Mommy Suzi

Thursday, March 19, 2009

The Sickness, Vicious Cycle Returns with a Vengenance!

Her's sweet Lily loving on her sick brother the other day!

Just quick update to say Luke is sick! I'm sorry for not getting on sooner, but my computer has been tweaking out on me. I went to put some pictures up last night and it wouldn't let me log in. Luke started getting sick on Monday afternoon, by Tuesday night he was full blown sick, I took him into the Doctor yesterday and he said it's not pneumonia thankfully, were not sure what he has. He's running a fever, coughing out yellow gunk, on oxygen, throwing up, you get the picture. We still have not heard from the Doctor wanting to take out his tonsils, but now we will have to wait again until he is healthy, what a vicious cycle!

Please pray,
Luke's Mommy Suzi

Tuesday, March 10, 2009

Happy Birthday to Lukie Boy, he's 6 years old today!

Today is Luke's birthday! It's hard to believe he is 6 years old, time flies so fast. He is spending his day going to appointments, not what most kids would want to do on their birthday. He began the day with his Auntie Cindy coming over to get him ready for the day and to do some exercises with him, then we went to his OT appointment, who was so excited to see Luke doing so well working with his switches.

We were going to be done after that but we had to change his ENT appointment from yesterday to today, because of a schedule mix up with the Dr., so I decided we might as well make it a full day so that we can take off a day later in the week, therefore right now he is the Hyperbaric Chamber. He's doing pretty good, though he keeps yelling at us to let us know that he wants to be done, when he's not watching the Rescue Hero movie he's going right now.

After we are done with his ENT appointment we are going to Grandma and Grandpa's house for dinner, he always enjoys visiting at their home, so I guess it will be a good ending to a very busy Birthday. I will share some pictures and all the results from his Doctor visits next time I blog.

Have a great day,
Luke's Mommy Suzi

Monday, March 09, 2009

EEG results, Neurologist and ENT appointments this week Luke has it all!

Today is a beautiful snowy day, though I hope the snow stops soon, Luke has lots of appointments today and I don't like driving in the snow. We begin the day this morning going to the Neurologist, he will share the results from the EEG Luke had last week. The EEG Tech said she didn't see any seizure activity, but not to get our hopes up they had to study the test because Luke has unusual brain activity. Duh, he suffered a brain injury!

Then this afternoon, if the snow stops I will take him to Port Orchard for a HBOT dive. After that at 4:00 we see his new ENT Dr. at which time he will probably be recommending a tonsillectomy and adenoid removal for Luke. Luke has been doing so awesome this last week, I'm having doubts whether I want to put him through that surgery. We need God's great wisdom in the matter!

We celebrated Luke's 6th Birthday on Sunday afternoon, his actual birthday is on Tuesday the 1oth this week. He really seemed to enjoy the activity and seemed to look at his cake and presents this year. He seems so much more alert this past week and so very smiley and happy or just the opposite, he's found his complaining voice again and let's us know when he is not happy. This year has been a hard birthday for me, I don't know what it is about him turning 6, except for the realization that he is not really getting better as fast as I had hoped for, crying for me has been a daily sometime hourly happening in my life lately. There you go keeping it real again, I'm praying that God will renew my joy and hope this week! Don't get me wrong I'm clinging onto hope with my fingertips, but I want to get to the place again this week when I'm strong enough through Christ's strength to hold onto that hope with my entire being, that might not make sense to many of you, but just know that I'm desperate for your prayers.

One last praise note, Isaiah is finally doing better, his cough is almost completely gone, Lily is doing better and Natalie is almost totally better, except for the nagging headache she's had a for a few weeks, please pray it will go away today for good. Thank you for your prayers!

Love in Christ,
Luke's Mommy Suzi

Wednesday, March 04, 2009

Luke Has Appointments, Appointments and More Appointments!

Lukie man has lots and lots of appointments this week and next! On Tuesday he had OT, which he is doing so well lately picking up and putting down his hand on a switch to make a toy or music go. He was working so hard on Tuesday he would actually make loud noises to get his hand to go where he wanted it to, his OT was very pleased with his progress. We left there and went straight to the HBOT center, by the time we got home we were both exhausted.

I've spent lots of time on the phone the past few days. Luke's Pulmonologist has called on numerous occasions letting us know that he is working on getting Luke into the Neurologist and ENT. Luke is scheduled to go into see the Neurologist next Monday morning at 10 a.m., but they wanted him to have an EEG before that day so he is scheduled to go in tomorrow afternoon for his EEG. I plan to take him to the HBOT center before going to the EEG, I'm praying that we will not see any seizure activity. I'm hoping that the seizures that were seen during his sleep study were caused by a lack of oxygen.

I've been talking to Luke's primary Doctor, trying to get Luke into see a new ENT, which is just getting set up at Mary Bridge in Tacoma, he will be the only ENT Pediatric Specialist in the area. There are plenty to go see in Seattle, but I would rather not go up there if I don't have to. Needless to say he is not a preferred provider yet, therefore we would have to pay out of network charges, so I've been trying to get that small detail taken care of, which is a challenge since he doesn't officially have a clinic office yet. Therefore we are seeing him in Luke's Pulmonologist office, next Monday afternoon. Another day spent at Mary Bridge, will the fun ever end???

Will you be praying that Luke's brain will settle down and begin to do some serious healing soon? I know that seizures aren't always a bad thing, they could mean that his brain is trying to make new connections. We need so much wisdom in really knowing what road to take for Luke's best healing possible. Also whether getting Luke's tonsils and adenoids out are what is best for Luke, I don't want to make that decision hastily, I've already been told by two Dr.'s that the surgery could be very dangerous for Luke. I need to be sure not live by fear, but faith, that's easier said than done some days, but I truly am trying and I know God's see's my heart.

One last prayer request is for our family to get and stay healthy. At least one to two people have been sick since January 15th. Amy, Natalie, Isaiah and Lily have all been sick this week. Lily and Isaiah are on antibiotics for ear infections, they both have a terrible cough, though Lily is doing a little better today. If Isaiah is not better tomorrow when he wakes up I'm going to try to get him back into the Doc again, he's been coughing so bad he can't really eat without going into a coughing fit. I can't help but wonder why so many are sick??? I just know that I'm sick and tired of sick and tired children, I mean that I'm ready for healthy children again. I know that many are going through trying times right now, I don't want life to be all about our family, if you need prayer please let us know so that we can lift you all up to God. We've been diligently keeping Sadie Belle, Baby Mia, Hayden, Valerie Grace, Jaynee Lockwood, Dennis, Noah and so many others in our prayers already, but we know that God is HUGE and is able to do more than we could ever imagine.

Love in Christ,
Luke's Mommy Suzi