Big brother James as Captain Jack Sparrow and big sister Alexis as Dorothy. Our church has an annual Trunk or Treat in the parking lot of our building. It was Saturday night and they had so much fun. 

Cass 10/30/04 

10/28/04

This week was up and down for Cass. He started breathing really shallow on Monday, like he was panting and taking about 100-105 breaths a minute. His heart rate was up about 180-190 and his SATS dropped into the 80's. Tuesday we went and saw his pediatrician and she sent us over to the radiologist to get a chest xray. It came out negative so we thought we would take him to his pulomonologist the next day, but that night the nurse from the pulmonology clinic called and said that his pulmonologist wanted us to take Cass to the ER. So we spent the evening at the ER where they took cultures of his trach and nose for RSV and pneumonia.They wanted to keep him over night to watch him but we have nurses and I didn't really want to lose the great nurses we have, and they really could do the same job watching him at home then at the hospital. They watch him even closer than if he were in the hospital. Wednesday his heart rate was high again this time up to 200-205 and his SATS dropped to 72%, with shallow breathing and no matter how much oxygen we gave him the SATS wouldn't go up. His whole body was bright red but he didn't have a temp. He was diurphretic and clamy. It was pretty scary because he was in pain and we couldn't do anything to help him. Thursday we spent all day at the doctors from 10 am to 4:30 pm. We first saw the GI doctor and they noticed granulation around the stoma of his feeding tube so they carterized it. That was painful for him. We saw the dietician next and adjusted his feeds and added an oil to his milk. Then we saw the pulmonologist where he set up a plan for us to follow if his heart rate should race like it did again. Hopefully it won't happen again. Cass has had a rough week and hopefully it'll calm down a bit here for him. He is up to 9lbs. 13 oz. today, gaining a good amount this week, but still considerably below the weight where he should be. Today he slept for most of the day, so I guess it has been a good day for him. I'll write more as we go along. Wednesday is the big day we talk to the genetics doctor, and I can hardly wait!!

10/23/04 "Trips to the Doctor"

Thursday and Friday doctors appointments went really well. On Thursday his pulmonologist was pleased with how his trach site looked. He was a little worried about his breathing so he gave him a stronger dose inhalation solution called DuoNeb to helped open his bronchioles. Everything else looked great to him and we'll see him in another 3 months or sooner if needed.
We also met with the dietician on Thursday and she wants us to increase his intake from 37ml hour to 40ml hour. She also increased his diet from a 24 cal diet to a 27 cal diet. He needs to fatten up. We're going to leave him hooked up to the feeding tube 24hrs and take him off only when needed. We'll meet with the dietician again next Thursday to see how the weight gain and feeds are going.
Friday's appointment with his pediatrician went really well too. He gained weight so he's up to 9lbs 4 oz. Little by little he is gaining. She was pleased to see how well he looked. It's amazing how much 2 oz can affect a baby. We'll go see her again in 2 weeks.
Thursday during Cass' bath he started to react more in the water. He loves his bath time and has started splashing and kicking the water. He is so happy in the water. While I was washing him he hit another mile stone. I was holding him up to see if he would put weight on his legs yet and he did. He hasn't at all up until this point. His doctor was happy with this mile stone. It's a sign that he is getting stronger. I know it doesn't seem that big of a deal, and with my other two children at this age I wouldn't have thought about it really, but for Cass this is a big deal since his muscle tone is so weak. I'm excited about it.
We're continuing this week with 19 hour a day nursing care. I don't think I can handle any less. Our insurance told us that the coverage for it will run out soon. Ryan and I are waiting for them to drop us. We're trying to seek out all our options. We looked into purchasing a secondary coverage plan but it won't kick in until 2006 and it's not cheap. If anyone has any advice, suggestions, experience with this kind of thing it would be greatly appreciated if you could share with us what you know.
The nurses that are helping to care for Cass have been great. I think they're all smitten with him. They have all meshed well with our family. We feel greatly blessed for the ladies that have come into our home to help. They are a great group of skilled nurses and they are taking care of us.
We're so thankful for the members in our church for all they do for us. For their strength, service, prayers, and love. I'm so thankful for those who have stopped by to express their love for us and those who have taken my children for a few hours. I'm thankful for all of our friends and family who live else where and send their love and prayers our way. And I am thankful for those who have happened to cross over this webpage without ever knowing us before and who have the love in their hearts to share the sorrow and happiness in our lives and to pray for someone you haven't met. I have a testimony of prayer and I know that our Father in Heaven listens to our prayers. We miss all of our friends and family who can't be here and know that your thoughts are with us. Thank you all, again!

10/21/04

I'm sorry that I didn't clarify what exactly Cass' syndrome is. It's called 4q Deletion Syndrome. His specific one is 4q34.2. We're not sure exactly what problems he'll have or what will happen. We're trying to deal with it day by day and be thankful we are together. Thank you all for your added support. It is very comforting to know others are reaching out to us.

10/19/04

We finally got a scale from the hospital. We had the hardest time trying to locate one that we could rent, but the hospital called yesterday and said they had one for us to borrow. He's still at the same weight as last week. We have his first appointment at the pulmonologist on Thursday and also with the nutritionist.
His SATS have been dropping into the 60% but then will bounce back up with help of oxygen. It seems he has to have more and more oxygen lately, or maybe it has always been this way I'm just noticing it more.
It's hard for me to think that he has any mental disability because he is so alert and interactive with others. Last night we were eating dinner and put him in the bouncing seat on top of the table. He watched everyone so intently and enjoyed being a part of dinner. Ryan and James were play fighting with swords and laughing and Cass was getting a kick out of the two of them. He looked as if he couldn't wait until he was big enough to play with them. He has this toy that when he kicks it it plays music, lights up, and parts of it spins. He loves it and is entertained for a while. It just seems that he is okay. He kicks the toy to make it spin over and over and reaches for the rings, he puts his hands together, he sucks on his thumb and grabs his ear while he sucks on his thumb, he seems to be doing normal things that he should be doing. We'll see, I guess, what his disabilities are when we meet with the genetics specialist.
We're still dealing with ways how to pay for the help he needs. I know eventually the insurance wants to cut out the home nursing care, hopefully it won't be anytime soon.
Things are getting back to some-what normal. We carved pumpkins with Lexi and James on Saturday and they really enjoyed that. They're getting excited for Halloween to come. James wants to be Captain Jack Sparrow from Pirates of the Caribbean and Lexi wants to be Dorothy from the Wizard of Oz. They love to dress up, but even more they love to eat candy. They helped me decorate the front door and loved it.
I better go feed the kids. I'll write more later. --:)

10/16/04

This past week we've been busy with trying to get all the equipment we need. Cass is adjusting well to being home and so are the rest of us. He sleeps pretty well and seems to sleep through being suctioned most of the time. He gets upset easily though when he's moved around too much. He loves to be held and falls to sleep easily in your arms. His temperature regulator in his brain doesn't seem to function well because one minute he's sweating profusely and then the next minute he's cold. His temp is all over.
Yesterday was his first check up at his pediatrician since his homecoming last week. He lost 1/2 an ounce this week which is surprising since he's on 21 hour feeds. So, his feeds were increased from 35 ml hour to 37 ml hour and calorie intake increased. He seems to be tolerating it well. He still vomits at least once a day and it usually occurs around 7 am. We decided to elevate his head even more to a 45 degree angle. Maybe it'll help the acid drain better out of the G tube.
We also heard back from the Genetics Specialist from Children's Hospital in Seattle. The initial chromosome test said that everything was normal, but something just didn't sit right with her so she ordered a retest. It turns out he has all 46 chromosome XY. Normally we all have 2 of each chromosome 1-22. Cass has all that, but further exploration of his chromosome showed that his #4 chromosome was where the problem was. One chain of his 4th chromosome was normal, but the other had a band missing. It's called deletion 4q34.2 or qter and it occurs during embryonic development for no apparent reason. Some symptoms are mental retardation, unusual facial and cranial malformations, heart defects as well as limb deformities. How severe his symptoms are, we're not sure but the doctor believes he may have a milder case. The problem is that there isn't a whole lot of literature on this topic because it is rare. We don't really have an exact guide to what to expect because there isn't any literature on his exact case. We'll meet with the genetics specialist in the beginning of November and we'll have more information by then, hopefully. He just seems to be so alert it's hard to believe that he may have some mental development issues. If anyone knows anything about this topic it would be greatly appreciated. All I have is what I've read on the internet. It's good to have a reason to why he's having so many problems so we can work with it. For the most part we are in good spirits and are prayerful that all will work out for the best. It's in the Lord's hands and we trust fully in Him. Thank you for all of your continued prayers and thoughts. We are truly blessed!

10/13/04

It has been so great to have Cass home, and a little overwhelming. I'm thankful we have nursing care. I can't imagine what it would be like not to have the help. Last night we couldn't find a nurse to cover so I had to stay up and care for him until about 5 this morning. I don't want to do that again. I have a migraine and I can't sleep during the day because of the other two.
Cass is doing good. I think he is happy to be home. His SATS drop still and he still needs oxygen and a few fevers. For the most part he seems more relaxed at home. His brother and sister are sure happy he's home. They check on him every morning when they wake up and throughout the day. It's a lot easier to have him home instead of having to go down to the hospital daily. I love being able to come and check on him in the middle of the night.
We're adjusting and trying to figure out a schedule that will work for all of us. The older two have been wonderful for a 2 and 5 year old. They have been great kids and very helpful.
Monday Cass had a doctors appointment and weighed in at 9lbs. 2.5oz. Not a whole lot but at least he is not losing. He also had 5 shots to catch him up on his immunization. Poor little guy! It was so sad not to hear his cry but see his face in pain. We'll go back on Friday to be weighed again and if he hasn't gained then we'll increase his intake.
I'll write on Friday to let you all know how his appointment went. Thank you for all your thoughts and prayers. We feel greatly blessed.

10/09/04 "Glorious Day!"

He is HOME!!! We are so happy to have our little baby home. We just got done with all the orientation for the machinery he has to be on. Talk about overwhelming!!! I'm thankful we have a nurse right now to help us adjust. I don't think we'll be going to a whole of place for awhile. He has so much equipment we have to drag around everywhere we go. He's home now and will get stronger quicker. Thank you for your prayers and thoughts. We'll keep you posted!

10/08/04 "FINALLY!!!"

Tomorrow is the day we bring Cass home. Everyone is ready, but nobody is more ready than I. Nurses are ready, doctors are ready, insurance ready, we're ready! He's doing great and I think he's ready too! Don't get me wrong, the hospital staff has been great. We couldn't ask for greater love and care for him, but it's been 6 1/2 weeks since he first went into the hospital. Most of his life he has spent in the hospital. I am so anxious and excited and so are everyone else in the house. I know it's not going to be easy but I know we can do it, and he'll get stronger more quickly if he's at home. He's far from being healed, but he is at least on the road to recovery and hopefully in a few years he'll be running around the yard following his big brother and sister healthy. We'll keep you posted!!

10/7/04 "The Ball Is Rolling!"

It's in the works for Cass to come home by this weekend. Wouldn't that be great!! His room is all ready, the nurses are set, and the doctors are agreeing that he needs to be home, especially before the hospital gets filled with too many sick kids. Right now he is on isolation to prevent him from getting sick. There's a limited amount of staff who work with him and they all have to wear the gowns and masks before they enter his room. Hopefully we can keep him healthy so he can come home. He is still on a few meds which he'll probably still take when he is home. He had an EEG yesterday and the cardiologist was pleased with it. They took him off Lasics which protects his heart against infection; they really didn't want him to go home on it. Everything is starting to roll for him to be released. We are so excited, and I think it's really going to happen this time! We all got our flu shots to protect him and he'll start his RSV shots in two weeks or so. I pray that he will stay healthy so he doesn't have to go back to the hospital, but that's getting ahead of myself. Thank you all for your continued support and prayers. We will keep you posted.

10/5/04 "Hopefully Will Happen"

We received a phone call this morning that the insurance will cover home nursing care through the rest of the year. Then hopefully my husband's work can have it put in the policy come the first of the year. So Cass may be coming home this week! We're more than ready to have him home. I'll write more later as the plans solidify.

10/4/04 "Monday Morning Latest"

This morning we found out that the doctor is sending Cass down to the 6th floor from the 7th where the PICU is. This is a very good thing. It's not home, but it's out of the PICU. We'll have a more private room for him so we can be there and not bother anyone else. It's a step closer to home.
Cass, as usual, is in a happy mood today. He smiles at everyone and doesn't want to miss on anything. He even smiles when they draw blood from him. He is such a good baby, with the best disposition. He adds so much to our family and we're so happy to have him in our family.
I'll post more later as we learn more of what's going to happen. Thanks!

10/2/04 "A Little Outing"

Since the weather has been so beautiful and unusually warm for this time of year we took Cass on a little walk outside around the hospital grounds. He and his big brother, James (2 1/2), sat in a wagon while Cass' dad pulled and I trailed with the IV pole behind. He enjoyed it and it wiped him out for the rest of the evening. We were able to take some pictures. Cass' big sis, Alexis (5), was at school and was unable to join the fun. Today we all went to visit him and spent a good while there. Lexi was able to sing to him and decorate his room with more of her drawings. They miss him too. A least the hospital is close enough so we can all spend as much time together as possible. The staff there has made it so much easier to leave Cass when it's time for me to go home. They are his family away from home and have been so loving towards all of my family. It makes it less stressful on all of us and makes for a pleasant trip when the whole family visits.
He has gained weight, weighing in at 9lbs and 3.5oz. Last Saturday he weighed in at just 9lbs. He is slowly but surely progressing in weight, but we still have a long ways to go. Before any more surgeries, he needs to be healthy and atleast 10lbs. He is on a 21 hour feed and 3 hours off through his feeding tube so he is pretty much eating constantly, except for those 3 hours. He's also on a higher calorie diet to hopefully boost his gain alittle. Since his tracheostomy and the GJ Feeding Tube he is more awake and interacts a lot more. It's amazing what breathing and eating can do for ya!
We're still trying to figure out the whole home nursing situation and insurance thing. Nothing new has changed with it. We're hoping something or someone will budge so he can come home this week with home nursing. His health has been great, he is stable and no new fevers or infections, knock on wood. So I guess we'll just wait...