still worried

Still a worried momma! over the last couple weeks I've realized that Logan's oxygen level has actually been lower than I thought. He looks great- is still active- still playing and actually doesn't look that blue to me. However on the playground at school Logan's o2 was between 69 and 74. If he goes below 75, he is suppose to have oxygen, but there is not an order for o2 at school because in the past he would only drop that low if he was sick, then he was home or in the hospital. My first call was to the cardiologist when I realized that he couldn't stay above 70 playing on the playground and not above 75 just picking up toys- he quickly recovers with rest. His cardiologist feels like it is a pulmonology issue. So, after not being able to get into the pulmonologist, I requested a x-ray from the pediatrition and the x-ray was negative for pneumonia- Logan's usual cause for low O2 with a pulmonary cause. So, I decided we would wait a week and 1/2 for the pulmonology appt. Well, Logan ended up in the hospital Saturday morning. He had a 103 temperature and the er doc thought he had a aspiration pneumonia- Noone else really agreed, but the dose of iv antibiotics made my little guy feel better. Logan's pulmonologist came in, he doesn't think that the low O2's has to do with pulmonology. So, we see him in the office on Thursday and he says Logan looks and sounds great. Ummm, what about the low O2 with movement? I put a call into the nurse of the cardiologist again. I am having a really hard time being patient. I'm having a really hard time not worrying way too much. Not sure what options are out there to treat a 3 year old with tricuspid atresia and portal vein thrombosis???? I keep wondering if I am overreacting? If I should just enjoy the time we have here with Logan.

Snuggling with my little man now. But feeling very sad and worried. Trying to rememer that God is in charge and is watching over my little guy. The cardiac catherization yesterday was alittle discouraging and worisome. We went in thinkig IF there were collaterals they would be coiled and all would be great- well stable for a while. I was hoping he didn't have them because i didn't want logan to have another condition we would be continually TREATING. Guess what he has them but,from what know in now they cannot TREAT them. They are too large. Logan has created a whole network of tiny vessels. Right now Logan is functioning fine. He doen't seem to drop oxygen levels too low for him on an everyday basis. When he gets a respirtory infection he has needed extra oxygen. My concern and i am sure future discusion for his cardilogist is what does this mean for his future. Will he keep creating these and how do we manage it and will the blood flow going out the collateral get larger causing lower o2 levels. Just a worried mama. Of course they said if he didn't have the portal vein thromosis this would be simple. They would just do the fontan. I think this is what is most difficult. Each Medical condition lo has effects the treatment plan.

Benifits of School

"Surgery" went well! Logan is home and doing good. So, one of my friends was on FB discussing Kindergarten and I think education in general. I'm not sure if I'm just weird, but I believe that schools do a pretty good job at what they do. No, they are not perfect. But, I think it's our job to teach our children to have an attitude for success. I have taught Jack most of the accademics he knows. But, since being in Kindergarten he has come home with new songs, wanting to make a behavior chart at home because they have one at school. He is loving Kindergarten even though the worksheets for math he is bringing home is counting to 5 and comparing numbers to 5. Ummm he can compare numbers to prob. 100 and def knows how to recognize numbers to 100. But, in my opinion that's not the point. The point is knowing how to follow directions and actually completing an assignment. Most kindergarten teacher's realize assignments like those are easy for most of their kids, but getting a strong base is very important. If Jack's teacher was to call me and say she thought he should skip kinder and go straight to 1st grade- which academically I know he could handle, my answer would be absolutely NO! Yeah, this week they are learning their 5 senses- yes he knows his 5 senses, but doing the activities is fun. His teacher this year is REALLY good at teaching students to learn through play and SONGS. I love this! Once they hit 1st grade in most cases, play and songs disapear and so much of that is important. As I do work with Jack most days on Reading and Math in a direct instruction approach, I do believe in learning through fun is important. I also believe that Kindergarten teaches kids to learn how to learn- how to sit in at a table "desk", complete an assignment independently. Kinder also teaches how to listen to a teacher. The kids are exposed to a whole lot of literature! I've told Jack that there is fiction and non fiction, read both to him, explained the difference many times in the last 5 years. Yesterday he says to me- "Mom did you know that there are books that are real and books that are made up- Mom I want to write a book that is real"- Ummm yes, I know that- fiction and nonfiction- he was like yeah- that's what I said. So even though I've said it 50 times to him- his teacher saying it once- it stuck. I think I plant the seeds, so that he can retain the information when it's taught formally. Aaron and I have discussed "education" in general a ton. His opinion is that it is rediculous that often the 1st quarter is spent reviewing the previous year. Yeah- that's true, but so much more is taught during that time. I think school gives us life skills that are difficult to do in other environments- I have home schooling friends and I'm sure they can teach these skills also- I think it's just harder. Things like working independently (life skill), taking tests, realizing that I don't get all the attention all the time. Learning there is a time and a place- talking about the weekend doesn't work during work time. Many of this carries over to real world jobs. Wheather you were the fastest at your math facts doesn't really make you a better employee or parent. But, your ability to listen, follow directions, work independently, solve problems will matter! I personally believe in the education system- I want my kids to do well in school and not to struggle- I did enough of that for both of them. Chances are Logan will struggle, but will hopefully learn to work hard and persist even when it's hard. I can go on and on about education and how to teach and what I believe is important. And yes, I've often wondered if homeschooling could work for our family- Jack would be extremely advanced in academics. I just really like the social community for learning.

Insurance people stink!!

Thought I would take some time to write about our latest journey. Logan is scheduled for ear tubes, hydrocele repair, and an abr this morning. Part of me is like yeah, here we go again- these are just routine procedures. Then there's the part that is like every other mother out there freaks when their child is going under anesthesia for even one of these things and I'm really not super worried. So, I start questioning if I should be more worried. What I think it is, that we've done so many of these non invasive procedures, that I have almost become immune to the panic. As I am typing this at 4 in the morning I'm thinking, maybe I'm a little more stressed about it than I'm allowing myself to feel. I'm not even sure the lack of panic is because I know God is there taking care of my little guy. Yes, I know that He is there for Logan and have asked for prayers. I even explained to Jack that Logan was going to have surgery and that we should say a prayer for Logan. Of course all Jack heard in the whole conversation is, I get to go to Ms. Phyllis'. I'm glad I have a great neighbor that my kids love when it comes to this type of thing. So, this afternoon was spent on the phone with the insurance company. Apparently because the hospital moved and supposedly didn't tell the insurance company, Logan's appointment with the urologist was not fully covered. The reason this was a huge problem is because the urologist is part of the surgical team tomorrow and they were telling me he is out of network. What? So, I went to the ins. website found his name 10 times with 10 different addresses in their list of people that are in network. They said well with the address that he is claiming this under, he is not in network- all of a sudden it hit me, duh- the hospital moved addresses. So, then the person I was talking to said well you will have to file an appeal for this claim and you need to get pre-approval for tomorrow. So they forwarded me to the pre-approval lady who said, I don't know what the problem is- that dr. is right here in the system with that address- by this point I was probably giving a little attitude- I'd already spent quite a bit of time arguing with the other lady. So I asked the pre-approval person to tell the claims people where she found the docs info and she said well I can transfer you to them. I was like, NO, I am not going to discuss further about how they cannot find the docs name. While all this was going on, I had put a call into the dr. office because I thought maybe they could shed some light and umm we need to get this figured out before tomorrow. Finally hours later, after several messages left at the docs office, they said we already have the approval- like totally nonchalant. Ummm why then did I just spend the last 3 hours discussing with people who don't care about our situation and "can't help" us. And why couldn't someone at the desk tell me this instead of transferring me to the voicemail of the billing person. Ugh!!!! So, while this was going on I kept thinking, do we cancel all 3 procedures or just the urology part- It took 3 months to get all 3 docs on board to do the procedures on the same day and now you’re telling me one of them doesn't accept my ins. company. I was slightly freaking out- maybe more than I should have. Thank God, it is all resolved and yes the surgery will be covered tomorrow as in network. I really, really do not like insurance companies. The hundreds of people they employ to do "customer service" have NO customer service abilities. I think it's a rule that they are not allowed to "think". They have to follow the xyz script and well unfortunately the xyz script doesn't usually pertain to us. Thinking of the positive, I got 3 hours experience of standing up for my kid. The procedures.... Ear tubes-normal every day procedure. We are going to discuss the benefits/risks of the long lasting tubes before the procedure. I think Lo is on set 5 at this point. Hydrocele/hernia- I really don't care for the doc doing this procedure. Lo's had it done before, before he was mobile. Part of me doesn't know why we are putting Logan through this part because I believe there is like a 30% chance that it can come back. That is probably why we've procrastinated it over 2 years. The concern is that it would become herniated and then we would be doing emergency surgery. I was not told what recovery is, so after researching on my own (one of the worst things I can do sometimes) I'm realizing that Lo may be home from school for 10 days and not allowed to do physical activity for even longer. Ummm for his physical development and the physical therapy that doesn't sound too great. ABR- is a simple procedure but it takes so stinking long. This will be his 2nd ABR. I was reading about it again and thinking, oh I wish there was a way to get Logan to do a normal hearing test. He is so afraid of the hearing "booth" that we have yet to get any results. He was terrorized from the stuffed animals behind the glass- they don't even try to use those anymore, but it doesn't matter. He is afraid. Some things are behavioral with him, but the hearing test is not a "I don't want to do it and you can't make me do it situation" It's I'm terrified to go in there situation. I know how to cure the I don't want to with a little candy motivation. But, fear I don't know how to fix. We've tried lots of things. It shall be an eventful day of waiting. Tubes are like 10 minutes, Hydrocele repair is about 30 minutes, ABR is about 1 hour to 1 1/2 hours. Plus the getting him to sleep part and waking up. The urologist mentioned an overnight stay, but we shall see. Personally I'd rather go home. So, prayers that all goes as planned and that there are not complications from anesthesia and that recovery from hydrocele is really a piece of cake and I was reading wrong information. :)

Logan's medical story

I'm sitting here with tears coming down my face after listening to a friends post about her child with some of the similar medical conditions as Logan. Logan's story-- It's actually quite an amazing journey. Logan was born at 37 weeks, he was given normal apgar scores, but when I was holding him in the room, I kept saying, he looks blue. Logan was taken out of the room for some of the normal hospital stuff. After what seemed like too long I sent Aaron to go check on him. Aaron walked up to the doctors working on Logan, apparently he had stopped breathing. By the time I saw him again, he was in the NICU having an ECHO by the cardiologist. At that time we learned that he had tricuspid atresia. The plan was for him to have 3 surgeries to make his heart the most functional. After about a week we went home with our little baby, who was finally eating and doing pretty well. The next 6 months are quite a blur. During that time we saw many specialist, he was on home oxygen at one point, transfered via ambulance from Naperville to Chicago. He also had 2 open heart surgeries. We had friends, family, and great doctors keeping us going- oh, I should add in the Ronald McDonald House too. During this time we also learned that he had a significant hearing loss, and possible vision problems. So, as time went on Logan kept getting respirtory infections until they finally decided he was aspirating on his formula because of a paralized vocal chord. So, at this point we were doing ok. Heart condition, I can handle- I understand- I have a heart condition, it makes sense to me- he will live and be ok with it. Hearing loss, at that time was ok because most of the loss was in one ear and the ENT felt like Lo would learn language without hearing aides. And his vision loss also seemed to be just one of his eyes. So, with Early intervention coming into the house constantly. Lo was starting to make some progress. Our next wave of bad news started with a scheduled MRI- Logan would need to be sedated. When they did the blood test, they found that his blood sugar had drooped really low- after several rechecks, an edocrinoligist was rushed in- At some point, they diagnosed him with Septo Optic Displasia (The diagnosis the eye doctor thought Logan may have and it was the reason he was having the MRI) So, the very reason he was having the MRI actually caused his low blood sugar. The awesome endo that saw Logan noticed that his liver was enlarged. More bad news coming in the same hospitalization. They did some ultrasounds and found that Logan had portal vein thrombosis. This is extemely rare in young children. He was only alittle over 1 at the time. We also learned that his veins are wired very strangely so the traditional shunts used to "fix" it wouldn't work. The next discussion was a liver transplant which was also quickly dismissed because of Logan's complex heart condition. They sent us home to wait and see. Logan wasn't having any major symptoms. Logan got a hearing aide when language wasn't developing, he was still drinking thickened liquids, very picky about eating any foods except for crunchy. We discovered that he had a milk and soy allergy. The milk allergy is significan enough where he could have an antiflatic response. The soy allergy was diagnosed because Logan kept throwing up over and over again after eating foods with soy. Logan was still receiving EI as much as he was healthy enough to participate. I found an infant massage class and the PT had a ton of ideas of how to get Logan to walk. Soon after he started at BDI and was pushing a walker and actually moving upright. We were thinking about last summer at the lake house and he was still using the walker. Logan walks indepentently now. His speech continues to get better. Logan had major sugery on his stomach 2 years ago. The portal vein thrombosis began to effect his life. He had no energy, had constant GI bleeds because there were varices in his esophogus and stomach. Dr. Superina removed the varices, placed a G-tube because prior to the surgery Logan didn't have enough energy to eat, he also placed a nisson. Logan did fantasitc after this surgery- he was like a whole new child. This past spring, Logan had 4 pneumonia's in a row- which prompted us to see a pulmonologist who thought Logan may be aspirating even on honey thick liquids- and the FEES (type of swallow study) confirmed it. Logan is now using the G-tube for all liquids. We have had several follow up appt. this last week. Cardiology is happy with how his doing. Pulmonalogy was also happy to see an active 3 year old. Endo couldn't believe how much he was talking. His recent endoscopy showed only very small varices- he did have a very inflamed stomach though. I have an amazing little miracle here. Yes, he is delayed and small. But, he is constantly making progress. Logan goes to a special needs pre-school. He also has Physical therapy and speech therapy. When I think about how much this little guy has been through, I am totally amazed!

Endocrine appt.

So, I am probablly worrying too much! Logan had an endocrine appointment yesterday. I wasn't real concerned. His blood sugars have been great! And I thought that Lo had been gaining weight in the last 3 months. Well, he was about the same weight-down alittle. He got alittle bit taller. I know that growth slows down at 3, but the endocrine seemed alittle concerned. They are thinking maybe it is more related to GI than his growth hormone levels. Well, we did the blood test to find out what his growth hormone levels are too. Which in January were undetectable and then then next time they were checked were alittle higher. We will find out in a couple weeks if they are at least detectable. I'm not sure if there is more of a problem- is it GI related or is it endocrine related? Should I even be concerned- he is acting and looks healthier now than he has in forever? Alittle background- he has Septo optic displasia- can cause low blood sugars, Dumping syndrome- really high highs and then drop really fast. He has been doing G-tube feeds all night and has seemed to have corrected the symptoms of the dumping syndrome almost entirely:) When lo was gaining weight consistantly he was feeding overnight and off all allergin foods even though the only allergy he tests positive for is milk, but has also been diagnosed with a soy allergy. His stools always have whole food in it. Like if he has brocolli, when he stools it looks exactly as it went in even the same color. My hope is that some of what he eats is actually being digested. He is on formula that is for super sensitive stomach's- given to kids who have difficulty digesting. So, he get nutrition from formula even when he doesn't digest the actual food he puts in his mouth. But, we have lowered the amount of formula as he is easting more. I am just wondering outloud if he isn't digesting "real" food, so when the formula is lowered- is he not getting enough calories/nutrition. Then why doesn't he digest food? I know he can "dump" food expecially when he eats alot at one time, but I am wondering if there isn't more. I don't know what else it could be- definately done my own research- and Lo's been tested for everything under the sun. Often I don't feel listened to as a mom, but since we changed GI's he has looked into everything and has listened to me. So, hopefully I am just overreacting and he is fine- will gain extra for our Dec. appt. I tend to worry, and thought I would share my worry. Today, I will pray for answers as we figure out what is or is not going on.

Inspiration

So, this facebook image is the inspiration for my blog. Yes, we all have storms in our lives. Some sneak up on us, Some come in really slow. Some you barely notice. others destroy parts of our lives. Yet, as this is stated so well, we come through our storms as a stonger person/family. I give it to God for helping us through our storms even when we forget to ask for the help. Our God is amazing!