More of the same

Okay, here we go again.

On Tuesday, we were finally able to get the VCUG done. We went in, and because the ER doctor was able to get the barium out a couple weeks ago, Simon had the VCUG. Everything with that was normal.

On Wednesday morning, we had an appointment with the Pediatrician, Dr K. Scott had taken the day off work so he could help with the kids. We all went in. I don't think the doctor really even looked at Simon. He knew we had an appointment scheduled with the GI doctor for later that day.

I had called two weeks ago to get an out of network authorization to see the GI doctor. Dr K's office never got it. They saw that there was already a referral in his chart, and decided that he didn't need another one. They were wrong. They told me that it would take a couple weeks to get the authorization, and we wouldn't be able to see the doctor until we had it. We already waited a couple weeks after requesting it. I was a little angry.

Finally after a few hours filled with phone calls and frustration and holding my tongue and trying not to scream at everyone, we were going to be able to see the GI doctor. Dr D was going to make an exception because he wanted to see Simon.

We went in for the appointment, and Dr D was great. He looked at all the records and results of all the tests already done. He gave us the results of the Celiac test, NEGATIVE! He examined Simon. He ordered more tests. He said that Simon is gaining weight, but not fast enough. He wants Simon to see a Geneticist.

We went and had more blood drawn. More tests and more appointments. My baby is not growing, and we don't know why. The doctors seem to be fishing now. They don't know, so they just order test after test. When do we stop? If all the results keep turning up negative, do we keep looking, or do we stop?

Maybe he is just a small baby. Maybe he is going to be built differently than my other boys. Maybe he is normal for him.

I know it is all in God's hands. I don't like waiting. I don't like not knowing. I keep reminding myself that I have four beautiful boys. I have an amazing husband. I have so many other things to be thankful for. I need to stop complaining. I need to stop dwelling on things that are not perfect in my eyes. I need to start thanking God for the things I have been blessed with.

Who am I to think I deserve anything I have?

I am nobody! I am nothing without Jesus!

6 months

When I was growing up my parents started to celebrate half birthdays. At first I thought it was pretty weird, but came to love it. We would get half a cake. I think that was my favorite part. My mom would make a round cake, cut it in half and make it a layered half cake. What a great idea, and great memories.

Yesterday Simon turned 6 months old, and I was remembering the half cakes. Has it already been 6 months? Where has the time gone. Though he wouldn't be able to have the cake, I almost made one. For me of course. He can have peas and rice cereal. ; )

Happy 6 month birthday Simon. Keep growing bigger little buddy.

Chunky?

I think it's happening! I think he is actually getting some fat built up.

Simon had extra skin on his arms and legs. Now, he still does, but I think it's less than before. Maybe it's just me being hopeful, but I don't think so.

Ever since going into the ER he has been happier. We have been able to set him down. I have so much free time now because I am not carrying him around all day. He loves tummy time. The boys love playing with him on the floor. He does really well. 

We still have some more doctor's appointments, and more tests, but things are looking up. We are also looking up, thanking God for the provision and promise.

A Light At The End Of The Tunnel

Ever since we left the hospital at the beginning of February, Simon has been referred to all sorts of doctors. All of them do the same tests over and over. There are never any results. I was getting sick of it. I wanted answers and they weren’t coming. Every time he saw a new doctor, they started at the beginning. He was supposed to see the GI doctor that he saw in the hospital for a followup. Because of insurance, he couldn’t. Simon’s primary doctor (we’ll call him Dr. K) referred him to see a GI doctor that insurance will cover.

On Thursday, we went to see the GI doctor. Not good! I will never go back to that doctor EVER again. After asking me why Simon wasn’t following up with the doctor he saw in the hospital, he said, “So now I get stuck with you.” I didn’t like that he didn’t care about my son’s health. He obviously didn’t want us there, and made that clear by not listening to what I had to say. He said Simon wasn’t gaining weight because he wasn’t eating enough. He is eating 5oz every 4hours, and we have been attempting rice cereal, but he still pushes it out with his tongue. The doctor didn’t like that answer. He said Simon shouldn’t be doing that and should be eating at least 1 Tablespoon of rice cereal three times a day by this age.

He ordered a bunch of tests, including 10 different blood tests, an ultrasound, and speech therapy. Yes, speech therapy for a 5 month old. Confused? I was too. He didn’t even address the fact that Simon still has barium in his system from the upper GI they did a month ago. I am supposed to return there in 1 month. Not gonna happen! I am not waiting that long to see if he will pass the barium on his own, and to see if there is anything else wrong.

After I left MR CRAZY DOC MAN’S office, I immediately called Dr K. We went to his office and even with a waiting room filled with patients, we were seen right away. Dr K said he didn’t really care for this GI doctor, but insurance rules must be followed, or I pay everything up front.

Did I mention I dislike insurance? Let’s just say that I am not a fan of insurance rules. Why can’t they just cover you wherever you go? I am thankful that we have insurance.

Dr K added some more blood tests to the list and said to get the blood tests done at the outside lab that the GI wants to use, and go back to see Dr K in one week. More waiting. He mentioned that Simon probably shouldn’t have been released from the hospital. WHAT?!?

All I want is to get the barium out of Simon’s system so we can get the VCUG done. If they want to order more tests, that is fine, as long as we don’t ignore the first problem.

I don’t know what to do anymore. I am trying to do what is best for Simon, while trying not to ignore my other kids. I am stressing over the fear that something might be seriously wrong, and trying to trust in God.

I spent all day Friday on the phone trying to figure out what to do. I called the insurance company to see if they would approve coverage to be seen by the original GI doctor from the hospital. The answer was NO! I was in tears a lot, and really just confused over everything. I feel like a horrible mother because I forgot to make lunch for my boys. Jameson finally came up to me and said, “Gavin and Teagen are sleeping, and I’m hungry.” I felt horrible and broke into tears again.

I called Scott because I really needed my husband to guide me. I needed him to tell me what to do. I was overwhelmed and couldn’t function on my own. Scott came home from work early, and sent me to the ER with Simon. He said that the only time anything was ever accomplished was at Joe DiMaggio’s Children’s Hospital, and that is where we needed to go. Of course he was right.

When we got to the ER there was a lot going on. They were very busy. I didn’t even see a doctor for 2 hours. That was okay though cuz I could have been waiting a whole month. Dr A came in and I told him the whole story. He looked at the records that I had with me from all the doctors Simon had seen. He looked at the tests ordered, and asked why they hadn’t checked for Celiac yet. He added that test, and then ordered lots of blood drawn and an x-ray, and an ultrasound.

It took three nurses and five attempts to get an IV in. Not fun! They filled six pediatric tubes with blood. That seemed like a lot. Half was to check for Celiac. We got the results back for blood, x-ray, and ultrasound, and everything was normal. It will take two weeks to know about the Celiac, but that is what Dr A thinks it is. Simon is showing all the symptoms of it. Very treatable. He would be gluten free for life.

Next, Dr A was very concerned about the barium. He told me that barium turns to cement in the body. He sees lots of babies in the ER after having barium. Simon was pretty bad though. He gave him an enema, and Simon gave birth to a huge ball of cement barium. It was about the size of two quarters.

They removed the IV, gave us a prescription and sent us on our way. We will find out in two weeks if the Celiac test is positive, and if it is then they will do a biopsy to confirm.

In the meantime, Simon slept through the night last night. He woke up this morning, ate, and hasn’t cried once. He is currently playing on the floor. I wasn’t able to set him down without him screaming before. I believe his is a lot more comfortable after getting that barium out.

Thank you everyone for your prayers and support. I am a lot less stressed after last night and getting answers and seeing a doctor that cared, and Simon is obviously more comfortable. Though God doesn't follow my timeline, He has always provided for and taken care of our family in His time, and we know He always will.

Thank you Lord, for taking care of our whole family. Thank you for guiding us in where to go and what to do. Thank you for my husband. Thank you for the doctors that cared. Thank you!