Pictures!

Daddy and his boys after church
Mommy and her boys (no comments about how my hair is the same color as the tree....!!!)

Truett -ba-guett

Jay and his baby brother

Daddy reading to his boys, I am so happy Dillon was lifting his head and looking at his book!

Jay helping Daddy rake the leaves, I love how the rake is bigger than him!

After raking we had some fun!

Truett in the leaves

My three little men!

Ok so Jay loves to pick on his brothers.... at least it is done in brotherly love!

Praise the Lord! Dillon has been doing so good he was able to go out without pulse ox or oxygen or suction and I was confident he was ok. I love being able to take him without all those tubes and wires we can do so much more with him! I love you Dillon!

Mommy and her sweet Dillon boy

Thanksgiving Day with my grandparents, uncles, aunts, cousins and aunt's parents in VA. We had a great time seeing everyone! I am so thankful I have a wonderful husband that said we were still going even once our nurse canceled out. He stayed up 2 of the nights with Dillon and I was with him the last night.

Sitting around talking, having fun together!

Great Grandpa and JayDonn. We love you Great Grandpa!

Making Apple pancakes. It is a tradition in our family, Grandpa makes them for special occassions. Last time we went to VA Grandpa thought it would be the last time we got them, and he said that again this time - but I told him I don't believe that since he was wrong last time. Praying for you Grandpa. (My Grandpa has stage 4 cancer, but God is good and he is doing well and is mostly pain free right now!) This time I got to help with the pancakes and put my sweat and blood into them - literally... i shredded my finger and was bleeding! hahaha It wasn't bad just enough to get a bandaide for!

Truett kept crawling under Grandpa's chair and laughing about it.
Daddy and two of his boys

Grandma and I working hard in the kitchen....

....while Grandpa and the boys are napping in the living room.

Aunt Sherry holding Truett

Aunt Sherry Uncle Donn and two of thier children with Truett

Daddy was so tired from taking care of Dillon two night in a row and the day before that we got up at 4am to drive to VA.

Mommy and Dillon - Jay took this picture all by himself

Jay took this picture of Grandpa and Gramma all by himself too!

Josiah put lights on the holly berry tree outside Grandpa and Gramma's house. It looked so good!

Truett looks like he is trying to stand ;o)

Sitting up like a big boy!

Look at my little man go! 6.5 months old, crawling, sitting and grwoing up WAY too fast!

Mommy and Truett

Hope you enjoy these pictures of what we have been up to recently! I need to post some videos here soon but at least these are finally on!

Hope you all had a wonderful Thanksgiving and looking forward to the season of celebrating our wonderful Savior's birth!

Updates

Let's see, what's been going on?

Josiah: Working, helping with the kids, singing for church, men's book study with men from church, video crew at church, etc.

Tiffany: House cleaning, laundry, caring for the kids, video crew at church, home school with Jay, etc

Aren't we exciting?

Now for the fun ones in the family...

Dillon: The brace was allowed to come off on Oct 27. He had been doing great with it off. Dillon has been going to church with us again. Yesterday he went to a vision class at the YMCA that his vision teacher heads up. He loves it! He was cooing during the circle time and did a craft. I even helped him finger paint the icing on his cookie and smell and taste the icing. He had a great time.

For almost 3 weeks he has been off ALL oxygen all day long!!!! Praise the Lord! I can't remember a time when this has happened. I think the robinul he is on to dry up his secretions are helping him to breathe better (since he isn't drowning). I am thrilled! Do you know how nice it is to just carry Dillon outside one some sunny days we had without having to take the pulse ox, suction and run oxygen tubing all the way out? I don't think I could describe how nice it has been to go out and just have oxygen in case we need it, but we haven't needed it! Instead of going through a huge oxygen tank every week we have been going 2 weeks and still only half empty! Thank you Lord! I can't thank you enough for the blessing it has been these last few weeks!

Nursing situations continue to test me. In every way, patience, being positive, trusting God, not hurting anyone, etc. We have had a lot of on going issues that I am trying to figure out how to handle them so they won't continue to happen and all the while trying to make sure Dillon's care is being done and without making everyone hate me. If I am too nice things don't get done, if I am too business I get people upset with me. I would rather have people upset with me, but even that is hard when I have to have a business relationship with people on a daily basis for the rest of my life! Please continue to pray for me. I don't think I will ever have this "figured out" as I am dealing with so many other people and I can't control how they act/talk/work/etc let alone how I act/talk/ etc.

Nov 18 we have an appointment for aquatic therapy at CHOP. It is the evaluation then we will schedule the actual appointments. I can't wait! I think Dillon will do great in the water!

Dillon did GREAT for the vision teacher today. I hung a black sheet in his therapy room that is the background for him to look at objects. We used it for the first time today and Dillon did so good. He kept opening his eyes to find a pink ball she had as she brought it into his view. I am so happy! He was actually opening his eyes, locating it and locking his eyes on to it.

Later today I picked Dillon up and heard a loud POP in his left leg. I didn't have a nurse here with me so I called my mother in law (who works on rehab floor in a hospital) and I called Josiah. Josiah came home from work when he heard me in tears. I thought for sure I dislocated his hip again. Right after it happened his eyes became huge and his heart rate went up and his whole body was tight. I called the ortho doctor and his nurse said to wait a couple of days. A couple of days? I think I dislocated his leg that he just had MAJOR surgery on and we have to wait a couple of days? I was a mess thinking I did something because every time we touched him his heart rate would go up. We decided to take him to a local ER and have them X-ray to see if any damage was done. It turns out it was just a ligament or something because the X-ray looks good. So I could have waited - but them I would have been torturing myself wondering if he dislocated it again and if he was hurting and if he would need surgery again etc. It feels much better to know the X-ray showed it is ok. They said the ligament could hurt for about week. :o(

JayDonn: Jay has been doing great with school. He can write almost every capital letter now. He loves doing school work. The only time we seem to have trouble is when the work is too easy for him. I was working with him on piano too and he couldn't do a simple 1-2-3 and I couldn't figure pit why. Then I remembered! Just because the book says to do right hand right doesn't mean I have to. I started with his left and PRESTO he got it! I have to remember he is a lefty! I can't remember any of the funny things he has been saying recently. I will have to start writing them down to put them on here. For a long time after Dillon's surgery Jay was in "melt down" mode. Since Dillon is coming out of it and able to go places with us again Jay is doing much better. His world is returning to normal. He is too smart for his own good! :o)

Truett: Truett - my baby - is growing up so fast! He is trying so hard to crawl. He gets his legs up under him then kicks out but usually doesn't go too far. If we put him on the inclined floor he can crawl the length of it (8 feet) in no time at all. He doesn't sit yet, but he doesn't stop moving long enough to sit. I think he will crawl before he sits. He still projectile vomits all over the place. Last night I held him above my face and he puked into my eye, in my nose, in my mouth, and covered my shirt. It was nasty! He sleeps in his crib in Jay's room now so we only have to heat one room. He usually goes down about 11pm and sleeps until 7am.

I think that is about all for now. I have to remember to update more often and to get pictures/videos on. Maybe one of these days - when I have nothing to do - I will sit down and catch up one them.... hahaha.... maybe. Thank you to everyone who reads this blog and everyone who prays for us. You don't know how much it means to me to know that when I feel like quitting, when I feel so down and discouraged there are people out there who are praying for us. No one told me the hardest part to being a Mom is having a special needs child, and the hardest part to having a special needs child is all the other people I have to work with on a regular basis.

ER and Family Fun

Josiah's brother and sister in law came in this weekend for a wedding. When they arrived, however, we were at CHOP's ER. :o(

Let me catch you up...

Wed morning when the nurse got here she took Dillon's temp and it was 102. Yikes! But we thought maybe he was just warm and we had to get out the door to get to CHOP for his post op appointment for urology and ortho. One the way to CHOP Dillon vomited so many times, he was fighting his brace, he was going crazy! It was non stop the whole way to CHOP. When we got him to the first appointment we saw his stomach was puffed out (and since he was having such a hard time, he didn't get food.) We vented his belly and got a lot of air out of his stomach and he still had a fever. We went to the next appointment and put him on the bench to rest while we waited. I carried him back to the X-ray room, then into the appointment room (let me remind you, Dillon is NOT light!)

While we were waiting I heard the doctor in another room telling a little baby (maybe 9 months old) "It isn't THAT bad!" as he/she was crying while having his/her brace adjusted. Then Dr. Sankar came in and said the brace has to stay on for two more weeks! My heart hit the floor and my blood pressure hit the ceiling. I specifically asked at the last appointment what the chances were that the brace would need to stay on longer. He told me "Almost never. I always take it off after 6 weeks." Well this time he told me, "I always take the cast off after 6 weeks, then put a brace on but since he already has the brace we will just leave it for 2 more weeks." What? Why wasn't that explained to me when I specifically asked? Because he isn't listening to me, he is always in such a rush to get out of the room. I was so excited to let life get back to normal for Dillon, Jay, me, everybody! Jay has been having a hard time the last 6 weeks and I was so excited that everything would start to go back to normal. Well it won't. Anyways, then Dr. Sankar started ripping, and yes I mean ripping, the tegaderm off of Dillon's incisions. I told him to stop and that I would do it at home. He wanted to see them, however. Then I asked him to get adhesive remover and he said "No, tegadrm comes off easily" Well Dillon's heart rate jumped up, he got all tight and mad. Remember now, he is horribly sick and doing bad as it is. Then when he was done ripping it off he started to pull off the steri strips that are on top of the stitches. The nurse suggested he stop and just cut the loose part off so he did that. Then he started to rip the sock off of Dillon's leg that was stuck to him. Again I told him to stop and the nurse told him to let us soak it at home so it won't rip Dillon's skin. After he was done, I looked at Dillon's legs and saw tons of red cuts in it where the tegaderm cut him. The nurses answer "Oh he must have very sensitive skin." I know this! This is why I asked him to use adhesive remover, this is why it is written in his chart to be very careful with adhesives.

I do NOT recommend anyone going to Dr. Sankar. He may be a great surgeon, but he has no bed side manner to be dealing with children. He is in such a rush he doesn't listen to questions and give you honest answers. After my 6 week check up I will start going to another hospital for Ortho.

Dillon has 2 more weeks in the brace - he can come out for a bath but that is it. Then he is allowed to come out of it without even having another X-ray. The biggest fear is if the leg crosses mid line it could dislocate the hips again.

As we left CHOP Dillon was doing as bad as ever. He was horribly sick so we rushed him home and put him on CPAP. He did calm down a bit, but still had his heart rate 140-180 (better than up to 230 like it had been at the hospital). I had given probably 80 drops of oreganol through the day. That evening his fever went to 103. That night we were trying to figure out what was going on with him, we thought he didn't have a bowel movement since Sunday evening since it wasn't recorded anywhere in the nurses' notes. That night, our nurse called off and they couldn't find a replacement. Which I am not sure why because the two nurses I have had since both said they could have done it if they would have been told when I was told (5pm) instead of 9pm or not being told at all. Thursday morning I called the doctor and told him everything that had been going on... you guessed it... he sent us to CHOP's ER. They did an X-ray which showed some back up, but not a blockage of the bowels. The blood work came back clear, and they did a strep test. By this time, Dillon was doing great. Other than the 4 sticks it took to get his blood/IV. They ran some fluid and said it is probably a virus that has to run its course. Josiah came to the hospital with his brother and sister in law and we were all there for several hours.

Since then Dillon has been doing much better. I think it was a virus and the oreganol knocked it out of him much faster. He still isn't handling his food as well as normal, but it is much better than it was. Friday we went to Valley Forge park with everyone except Dillon who stayed home with his nurse. Yesterday Grandpa, Grandma, Daddy, jay, Truett, and I went to Lancaster to see animals, eat ice cream, and buy pumpkins. Since we had a call out we had extra hours to use so again Dillon had to stay with a nurse. I can't wait for this brace to come off so he can do things with us again!

Tomorrow! Tomorrow!

Tomorrow! Tomorrow! You're only a day a away! After 6 LONG weeks - Dillon will be getting his brace off tomorrow Oct 13 at 1pm (ish) He has been stuck in this bed for the last 5 weeks, moving only to his right side. Just yesterday we finally put him on his belly for the first time since the surgery... You can see how hard that was!
He was so happy! His heart rate came down, his oxygen levels were great, he slept so comfortably. He has been on medicine to help with the secretions, but he still loves his belly! Tomorrow, Baby tomorrow! He can have baths again, go on his belly, be HELD, go out with us, start therapy, be moved around. I don't know who is more excited him or me!!!

Truett liked to eat his toe, the one with the red light. He would make a funny face at the taste, but then look at the glowing red light and have to go back for another taste! Truett now rolls all over the floor. You leave him on one side of the room and find him someplace else a few minutes later. He is trying to crawl but can't quite move yet.

Postural drainage. You have to get creative! Actually he would slip down in the brace so his G-Tube was be pushed by the stomach strap, so we would do this to "pull" him back out of the brace a little so the tube was in a better place.

I am so bored with my hair. It is so thin after having babies so I was trying to decide what to do with it. I wanted to dye it to a dark brown with hints of red. Well this is what I got....

It was CHERRY RED. OOPS. Well a friend on facebook explained to me that you can't go from light brown to dark brown without going to red first, so actually I did need to do this. So then I added brown on top of it and then got it cut. So this is what I am now....

Still much more red than I had wanted, but at least I don't look like a cherry anymore...well now I just look like a cherry with chocolate syrup on it! hahaha Oh well at least it is hair and hair grows back and dye will eventually wash out! :o)

Not again!

Dillon's patch to dry up his secretions was done and I couldn't find a doctor to write for more. All the doctors kept saying have the first doctor who wrote for it write again - well that was the PICU doctor and they don't write for anything once you leave the PICU. I don't know why messages weren't being given right but they weren't. We got an appointment scheduled with a Pulm doctor... but for some reason my doctor didn't call my normal pulm doc he called a different one. This new one WANTED Dillon to be full of secretions so he could see how bad he really is. huh? That means we are risking an aspiration so he can see for himself it is bad? Why aren't we seeing his doctor who already knows his baseline?

So our appointment was yesterday, we left 1 hour 15 minutes before the appointment. But due to the flooding and sink holes and accidents on the road it took us 2 hours to get there. We called 2 or 3 times to tell them how late we were and they said to keep coming. Once we finally got there the nurse told me we had to go home and reschedule. I argued with them that we were told to keep coming. She made a phone call and said I don't know who told you that but you have to go home. I kept arguing with them and told them if they didn't see him I would have to take him to the ER (he was coughing SO bad by this time for hours!) The nurse practitioner finally came out and said she was the one we talked to on the phone. I explained Dillon's health issues to her and she went to talk to the doctor. They finally said they would see him, but they didn't know how long we would have to wait. It didn't matter - he needed to be seen.

It wasn't too long of a wait and the doctor was in. He was talking to me about options to dry up his secretions and asked if we are sure we want him "dry and sticky" I said yes I have to for the next two weeks. He said Oh you only want it for 2 weeks, oh then that is no problem I can write for it, that wasn't what I was told. AHHHHHH Why wasn't the message given properly that I am looking for help with his secretions for the 2 weeks we have left in the brace then after that we can position him like we normally do?????

Anyways, the doctor and I decided to put him on the medicine he is allergic to. We are doing a low dose and have upped our limits for oxygen to 4LMP if needed. This medicine we can adjust the dose up or down based on what he needs, the patch he was on is an all or nothing and tends to dry him up too much. The doctor also wrote me a script for this in case we need it.

On the way home and to the pharmacy to get the medicine guess what Dillon did. Aspirated! After coughing the ENTIRE 1.5 hours home he aspirated. He projectile vomited brown stuff from the back seat to the dashboard. He has been sick ever since. He started with a fever, high heart rate, non stop coughing, tight muscles, etc.

The new nurse last night didn't understand when to give more of the medicine so he was coughing all night and so he is having a bad day. His oxygen levels are ok so far on the new medicine so we shall see.

I appreciate all your prayers. I am sorry I have to ask people to pray all the time for us, but it makes a difference and it helps me to hear from people that you are praying. There is such a comfort in knowing that people are lifting our son up to the Lord! Thank you!!

Hot Air Balloon

Remember how Josiah bought us a Hot Air Balloon ride for my 25th birthday, but it was canceled due to weather? Well we got to finally go on the ride last night! It was awesome! I started getting nervous as we were driving there, then I was fine, then I got nervous as it lifted off... but it was totally awesome!!!

Here we are meeting up with the group...
They said they used to do all the work, but people always wanted to help so now they let people help set everything up and take it down.

It was HUGE but this is not a "big" balloon they said! We almost didn't get to do it since it was still pretty windy but at the last moment they decided to go for it! He said the balloon is 50K but since the owner wanted pictures of flowers and her dog on it it was 65K. Wow!

The fire was so hot right above our heads. It was cool jumping into the basket then lifting so gracefully off the land.

Look at the view! Awesome!!

Thank you Josiah - this was a wonderful birthday present and I will never forget it!

The sun setting in the distance.

We actually hit trees with the bottom of the basket to slow down then only had 2 bounces as the basket landed. It wasn't bad at all. Then the men jumped out and moved the basket into the field a little more. We happened to land in a field that wasn't privately owned. Some men saw us hitting the trees and thought there was trouble so they ran over, but it was just how you slow down a giant balloon filled with air and a basket full of people I guess!

All I can say is totally awesome and I would love to do it again sometime! Thank you Husby!!

Compared to Daddy

Mom K pulled out her notes from when Josiah was little. She has a lot of them but I am pulling a few things to put in here.

Daddy at 5 months compared to Truett at 4 months:
Daddy: "His hair falling out a lot now in his bath water and when he lies down."
Truett: His hair has fallen out in a line around his head.

Daddy: "He has rolled over a couple of times but is not real good at that yet."
Truett: Rolls all the time now. He made a giant circle around our floor yesterday as he rolled from back to belly to back to belly, etc.

Daddy: "He can sit up with support."
Truett: He is not sitting up at all yet.

Daddy at 3 years compared to JayDonn at 3.25 years:

Daddy: "Josiah has some pretend cats, dogs, birds and a boy he calls his brother Tommy."
JayDonn: Jay had a pretend friend, I can't remember his name. but his friend was around almost a year ago. He was green and had wings, and only came out when the neighbors were making loud noises.

Daddy: "Can make Ezra laugh a lot by pulling on him or half sitting on him but sometimes gets too rough."
JayDonn: All I can say is DITTO! Jay does the same thing to Truett. And he laughs but then Jay will get rough and I have to step in to keep everyone happy.

Daddy: "Usually gets 1-2 reminders a day - often for disobedience and talking sassy."
JayDonn: Well pretty much the same thing! Disobedience and talking sassy are his biggest problems.

Daddy: "Loves to chew gum."
JayDonn: Everyday he asks me if he can have more of Grandma's gum, or anyone else who ever had gum that he knows of. He almost always spits it in the trash rather than swallowing it.

Daddy: "Likes to make up words."
JayDonn: molly-golly-sholly-folly-crawly, etc He rhymes words and totally makes them up. It is so funny!

Daddy: "Shows an independent spirit and often needs rebukes for talking sassy."
JayDonn: I don't think I have ever met a more independent child than Jay. He has told me not to come get him from class, that he "can do it" about everything!!, he has tried to ride his bike by himself to walmart to buy a fish, etc.

Daddy: "Likes to talk."
JayDonn: From the moment he wakes till the moment he falls asleep it is non stop!

Too funny how much my boys are like their Daddy. Mom K didn't remember things like the gum or making up words, but that is exactly what Jay does.

Drugs - I can't stand drugs!

This morning the nurse told my mother in law that Dillon's ketones were at 40. She didn't know if that was good or not but knew that I said to tell me if they were less than 80. I'm glad she remembered to tell me! It is very important! Dillon's ketones should be "large" or 80-100. We check them by a urine strip and it changes color; the darker the purple the better. Mom K tested herself this morning and thought it was between 40-80 based on the shade of purple. I tested this afternoon and thought it was close to 40 as well.

We called the doctor and he said if they go below 40 we have to call, if they are still at 40 tomorrow we have to call, if we see any increased seziure activity we have to take him to the ED (emergency department).

The fear is that when there are less ketones in the brain he is not in full ketosis. This means he could go into a prolong grand mal seizure that could be life threatening. So far there is no increase in his seizures, Praise the Lord!!

One of Dillon's nurses started looking some things up for me since there has been no change in his diet or what we are doing with him besides the new pain medication he is on. She believes the valium may be throwing off the diet. I am not sure yet. But here is some things I am finding that disturb me greatly:

1. These drugs have sedative and anti-anxiety properties as well as being anti-epileptic. They are in fact only fairly week drugs against epilepsy, while their tendency to produce sedation and dependency greatly limit their usefulness. In practice, these drugs should never be used as a first choice, but rather reserved for those situations where epilepsy remains uncontrolled despite treatment with adequate doses of other anti-epileptic drugs. VALIUM (Diazepam, Roche Products Pty Ltd) (Great he is on that one, has been for 2.5 weeks and will be for the next month probably! Good thing we are trying to wean him back on how often he gets it already)
2. These drugs were widely used in the 1950's and 1960's, but are now considered to be obsolete. They are not very effective in suppressing seizures, but they frequently cause slowing of the intellect and depression. Withdrawing these medications can be extremely traumatic, with anxiety, restlessness, tremors, insomnia, and an increased risk of convulsions being prominent as the drug leaves the system. PHENOBARBITONE (various manufacturers) (No he isn't on this one now, but this is the one they put him on a a 12 hour old baby and had him on for months after birth! Love it!)
3. This is about Valium and the keto diet: Tablets 2mg Lactose, Maize starch, Pre-gelatinised starch No quantitative data provided. (meaning there is strach and sugar in it which are normally not good for the diet and may be enough to throw it off!)

Will find more and post more later.... Until then please pray Dillon does not have any complications with his diet and that we can get him back into ketosis! Thank you!

Dillon update

Well on Tuesday we took Dillon to the doctor, and just as I guessed, he has pneumonia. His lungs sounded horrible! The secretions were so thick he couldn't cough it up. At one point, before we took him in, we had him on CPAP with 3 liters of oxygen and he was still holding his oxygen too low. He did cough up a large amount and then started to do better, I think he cleared a plug out of his lungs. He started on an antibiotic and by the next day he was doing much better.

The next day he had his follow up at CHOP for othro. They took new X-ray and said the bones look great. The hips are right where they should be and everything is going good. We have another appointment in a month in which time they will do another X-ray and will probably take the brace off.

We are working on trying to decrease his pain medication a little so he is only on what he needs. He is on Tylenol and Oxicodon at the same time then Diazapam. We were giving one then 3 hours later another. We are now trying to wait four hours in between each med. We let him sit outside one day in his wheelchair for lunch to enjoy the sun and wind. Today Josiah, JayDonn, Truett, Mom K, Dillon and I went on a walk to the park right up the road. We had a picnic and Jay played a little then we walked back. Dillon's heart rate was pretty high by the time we got home and he is resting now. I think he does like to feel the sun and the wind, though.

Last night we (Josiah, Mom K, Truett, and I) met up with some of my extended family who was coming into Lancaster for a Sight and Sound production of Joseph. It was pretty neat. It has been over four years since the last time I went.

Mom K is planning to leave on Tuesday, after being here for 2.5 weeks. We couldn't have done it without her! We have had 3 nights I think since we got home from the hospital without night nurses. The agency is part of the problem. They knew we didn't have a nurse for several days but no one told me so I didn't know to try to find a replacement. Please continue to pray for me as I am finding new nurses and deciding what to do about people who have major communication errors (that is the politically correct way of saying it, but not how I feel like saying it!) I have a new agency starting on Tuesday night and a few new nurses. Hopefully we can all work together to make sure Dillon's care is the top priority!

Jay never ceases to amaze me at all he says, does, his funny faces, etc. Truett is absolutely adorable. He is such a happy and content baby.

Well that should bring you up to date with the happenings around our house. We truly appreciate your prayers for Dillon. He is doing better than I could have imagined! God is good!

Tomorrow

Last night Dillon started on BiPAP and was taken down to CPAP today. Then his oxygen was taken from 2 LMP to 1LMP. They also started food again for him tonight. His heart rate went up a little, but nothing to major. Tomorrow they will probably "sprint" him. This means they will take him off of CPAP and just put him on oxygen for a few minutes at a time to see how he handles everything. They have put a patch behind his ear that is for motion sickness but has the side effect of drying up secretions. It seems to be helping so hopefully he will be ok without CPAP. He HAS to be on his back, which is the worse position for his secretions.

Tomorrow they are also planning to remove his epidural which has been working to keep him numb from the waist down. This was to keep the medication from effecting his lungs (breathing). Tomorrow when they take it out they will probably have to increase the other pain medications - which comes with the risk of depressing his respiration. Please pray he will be able to breathe with enough medication to manage his pain. Please pray for wisdom for Josiah and I in knowing if he is in pain and needs more medicine. The doctors/nurses are being great at asking us how we think he is doing since we know him best. It can be hard to tell with Dillon since he can't tell us and I don't want him to be in any more pain than necessary. I am praying God would give me extra wisdom in knowing exactly what Dillon needs or doesn't need.

Everyone at CHOP has been great so far this time. I took in note cards that explain what is and what is not seizures and so far everyone seems to be listening to us. This is a huge improvement! Please pray they would continue to listen to us - the LAST thing Dillon needs right now is to be drugged to a state of unconsciousness over something that is not a seizure!

The swelling in Dillon's left foot was doing a little better. It was finally warm again today instead of being ice cold. They are checking it every 4 hours with a Doppler to make sure they can hear the pulse in it. The nice thing about the brace over the cast is they have loosened some of the straps right now while he is swollen and they can make it tighter as the swelling decreases.

I am so afraid of the pain he might be in as he wakes up and is taken off more of the pain medicine. It breaks my heart to know he might be in horrible pain - and that I caused it. I handed him over to the doctors to cut his bones in half! But, Josiah keeps reminding me, he was in PAIN before the surgery. Every single day he was hurting and he was bruising himself on his wheelchair from pushing so hard against it. So my biggest prayer is that this will offer him some long term relief. I know the next 6 weeks are going to be hard but it will have been worth it if it helps him to not be in pain afterwards! I know he will probably have to have this surgery one or more times again in the future, but I am going to do everything I can to prolong the next surgery!

Thank you so much for praying for him. I believe he is surpassing everyone expectations due to prayer! God is helping my little man fight. Thank you!

Truett Rolled!

Tonight Mom K, JayDonn, Truett and I went to church then came home. Josiah doesn't have to work tomorrow so he is staying at the hospital with Dillon.

A few days ago Truett rolled a few times from his stomach to his back - which of course is the easier of the rolls. Tonight he rolled from his back to his belly! Several times! He is laying in Dillon's bed and rolling around as he sucks his thumb. Good job Truett! He is about 3.5 months old.

The hourly updates from the surgery

Well I tried to get these in the right order, but they're not. Oh well at least they are all there with the times and everything. I had updated facebook every hour when they gave up updates so I didn't want to lost that information. One thing that wasn't on there, because I wasn't told was Dillon did have a blood transfusion (about 200cc of blood).

Surgery update

Dillon is out of surgery. Will try to update tomorrow. Surgery went from 10:50am untill about 8pm (about 9 hours!). They had to do the most invasive procedures on the left hip. This means they had to do an extra incision and dig out the hip socket and even cut the pelvis bone and use part of the femur bone to change the angle of the pelvis. He is still intubated in the PICU and on a LOT of sedation drugs. he is having a lot of little seizures though. He is such a little fighter - he is still waking up, opening his eyes, lifting his arms in the air, coughing against the breathing tube to clear secretions up and out of the tube, breathing "above" the tube (he is doing the work not the tube) etc. They gave him more sedation drugs to calm him down. Please continue to pray for him.

Will post more tomorrow. Thank you!

Surgery!

Friday Sept 3 Dillon will be in surgery. He has to be at CHOP by 6:15am for a 5-8 hour surgery.
Here is what he is having done:


a. Bilateral femoral osteotomy - this is where they are cutting both femurs, re-angling the bone and putting them back together with large “L” shaped plated and screws
b. Cutting both Iliopsoas tendons
c. Pulling the left hip back into place, if it does not go in on its own they may need to cut additional muscles, dig tissue out of the hip socket and/or cut the pelvis and use part of the femur to re angle the pelvis.
d. Injecting dye into both hip socket to exam the degree of damage
e. Releasing un descended testicles
f. Double hernia repair


I wanted to finish catching up before now but didn't have time with all the pre-op stuff. Ohj well, will play catch up later. Please be praying! He is going to be in a lot of pain and mad that he will be strapped to a brace afterwards for 6 weeks!

Will update tomorrow if possible.

Nursing problems

We have been having a lot of problems with our nurses, I would appreciate prayers in this area. I am having to learn how to be a “manager” and check up on people. I have never held a position like this before so I am totally out of my comfort zone with this. But for Dillon’s sake I have to do it.

I found out a nurse was signing off on giving a medication for months and he didn’t even know where it is in my house! Needless to say I fired him, but as far as I know the agency still hasn’t fired him and told him the reason I fired him was just because I found someone who could work more days. Why didn’t they tell him I fired him because he falsified documents? Why didn’t they report him to the nursing board? Why didn’t they fire him? I don’t understand how they are “upset” at what he did but take no action about it. The medication he wasn’t giving for months was throwing Dillon’s diet off and causing him to have a lot more seizures everyday than he would have been having! This nurse was also told 4 times not to turn the volume of Dillon’s oxygen monitor to the lowest setting. It alarms for a reason, it is loud for a reason. If it is going off you need to hear it, I just don’t understand people….

Another nurse, from another agency, fed Dillon way too early one night and he projectile vomited – I know because I was here and saw it. When I asked her if she fed him early she said yes 9and she fed him in about 10-15 minutes even though I told her it had to be done over 30-45 minutes). When I told her she can’t do that she said “I am an adult too you know. I am not a child.” To which I replied that she needs to read her nursing instructions because they are there for a reason – his protection! The next morning I read her nurses note and it said that she fed him at 12 and gave meds as ordered. She said nothing about feeding him too early and too fast, nothing about the vomiting (which he did aspirate on and I had to give natural antibiotics to clear him up). We reported this to the agency and they did an investigation and she no longer works for them. (At least this agency takes falsify documents seriously!)

Other nurses keep calling off – usually at the last minute. Even when they do call off with a few hours notice we are almost never able to find a replacement. A nurse just today gave one night notice that she is quitting (because she never wanted night shift and the agency knew this – I told them myself – but they still kept her on anyways.) So now, we have 11 nights open for the month of September that we are *trying* to fill.

There have been even more problems though. As I started looking back – no one has been doing range of motion and everything I read about Dillon’s upcoming hip surgery is that it is preventable if people were doing range of motion. He may still have needed it, but not this young. Having it this young ensures he will need to have it one, two or more times in the future. Why aren’t the nurses doing range of motion on an immobile patient? I thought that was standard procedure. I now have it doctor ordered to be done every shift.

The agency thought it was ok to have a nurse who worked all day at another job come to my house that night, knowing that she was then going to work all the next day. I don’t see how that is possible unless you are sleeping somewhere and I don’t want them sleeping while caring for Dillon. He needs them to protect him or he gets eye infections from secretions, struggles to breathe when the CPAP comes out of his nose, gets pneumonia from lack of infection control and cleanliness, etc.

Nurses have not been giving Dillon oral care (I know have that dentists ordered to be done every shift as well), changing supplies, cleaning supplies, etc. His oxygen humidifier has rocks of calcium in it because no one ever cleaned it. That means he is breathing in oxygen that has that built up in the water. I made a HUGE paper (about 3 feet long on the inside of the closet door where his supplies are neatly organized into individual baskets) with when supplies should be changed and people are still looking at the list and deciding what to change and what to ignore. I really don’t know what else I can do other than to clone myself and do it all myself.

I started to interview and orient the nurses myself. Which was going great – I had the best night nurse I have had in a while this way. But she was the one who didn’t want nights and just quit. I am trying to take a more proactive approach to it all. I am now asking them if they completed the cleaning list I have posted beside his bed, if they are checking his ketones, if they changed the supplies, etc in the morning before they leave. I am doing what I can even though it is so hard for me, because Dillon needs me to.

Please pray for me in this area that I would speak with wisdom as I handle different issues that arise. Pleas pray I would know when to keep a nurse and when to fire a nurse. Please pray that God will direct me to ask the right person the right thing if something isn’t being done that should be etc. Please pray we would finally get some nurses who aren’t trying to come here and sleep but that would actually love Dillon and want to take care of him.

Corvettes for Kids

Corvettes for Kids was on August 8, 2010. It was a humbling experience. Corvettes for Kids pick one child each year to be their “spokes child” and this year they chose Dillon. They have a Corvette show with a silent auction, a live auction, food, games, etc all to benefit the kids. This was their 25th year and this year their total raised for all the years went over one million dollars.

These people are all volunteers and do it just because they love helping the children with medical issues get the things that insurance won’t cover. When I pulled up and saw the huge school yard filled with over 200 corvettes, knowing they were there to help DILLON – MY Dillon – it was humbling. God is amazing how he always provides for us by using generous people. People are amazing for giving of their time, energy, and money to help. Friends of ours from church spent time getting companies to donate items for the auction and then they came to the event. I know I keep using this word, but it is the best word for it – humbling. To know our friends, family, and strangers gave of their time to help us…. Thank you.

Thank you to everyone involved in the event!!!

P.S. It worked out that Josiah’s parents and sister were able to come for the weekend. It was the first time Hannah got to see Truett so that was great too.

Our new house

I haven’t updated my blog in a long time! I need to catch up. I am going to do multiple entries so they are organized better. After my birthday, our nurse of 5 days a week for a year and a half had to sudden quit due to medical issues in her family. We miss her a lot!

First things first - our new house. We moved on July 3 and the days following. My parents were still here for it and were a big help. We hired my Dad to paint the outside of our old house to get it ready to go on the market. It looks so much better than it did. The move went well, the unpacking however is slow. We are mostly unpacked now, but there are still things that I don’t know what to do with them. The house has a good size front yard and a fenced in back yard – which is great for Jay! There is a garage that connects to the breezeway and then right into Dillon’s therapy area where we spend most of our day. It has tile floor, which I have a love-hate relationship with. I love that I can clean Dillon’s secretions off of it, but I hate that the moment I sweep and wash the floor there is still stuff there! This room is big enough for his stander, patterning table, incline ramp, mattress, wheelchair, liquid oxygen tank, cupboards with his therapy supplies, a loveseat and his area to lay on the floor. It has a fireplace in it, although I am thinking we won’t be able to use it with his huge liquid oxygen tank in the room.

Then there is a kitchen off of the therapy room, which I am using right now. It is a large eat in kitchen with a door to the back yard. This floor also has a totally awesome bathroom. The previous owners had the bathroom redone by HGTV and it has heated floor, a heated towel rack and water temp that is pre-programmable (which means it will remember Dillon’s temp so no one will make it too hot or too cold). Then down a few steps is where Dillon’s bed, dresser, medical supplies, nurses writing areas, my computer, Jay’s school stuff, and laundry is. Up a few steps from the therapy area is the other kitchen (which I currently don’t use at all) and a formal dining room and living room is then up a few more steps are the three bedrooms and a bathroom. Our bathroom isn’t as cool as Dillon’s, but it is pretty big and we have a nice bathroom set in it which helps off set the blue bath tub and blue tile. :o)

In our back yard is a big fig tree, it produced SO many figs this year and they are delicious! I had never had a fig before now, but they are so good! It is so much fun to walk in your back yard, pick fruit off the tree and eat it!

We are so thankful God provided this new home for us to live in. It is been a huge blessing to us!! Now if only we could sell (or rent) our old house that would be perfect!

upstairs kitchen (the one I am not using yet)

formal dining room

foyer

"Dillon's" kitchen

Dillon's bathroom

Dillon's bathroom

Back yard

Front yard