Update

Yesterday we got another x-ray of Gracie's lungs and the haziness has cleared up, yeah!!! So we have backed up on how many doses of diuretics she receives and hopefully she will be ok. Speaking with Gracie's cardiologist, he now wants to do another echo on Monday at our appointment to see what is going on and hopefully rule out any cardiac issues that may be affecting her lungs and ability to oxygenate.


We also met with GI yesterday and good news---Gracie seems to qualify for a G-tube. I'm thrilled, I am so tired of the NG tube. I'm tired of replacing it every week because the end won't stay shut after being used to push meds and feeds through. I'm tired of Gracie pulling it out because she gets frustrated that it is always there. And I won't have to feel like I'm torturing her every time I have to place the tube and she screams and holds her breath, then looks at me with her big beautiful eyes with such a look of hurt and betrayal in them.


I hoping that with the G-tube Grace will hopefully start gaining weight and even start swallowing some solid food. She loves having the food in her mouth, but anytime it gets near the back of her mouth she gags it up.

We don't have an appointment yet, the GI doctor said that they are backed up three to four weeks, so we are looking at December. I really don't care as long as we get it done this year, since we have reached our deductible.

Busy day

Grace and I had the pleasure of being at the doctor's office and hospital for three hours today and we get to go back tomorrow and Monday! As you know from the previous post, Gracie went to the doctors on Monday, she received 4 immunizations, plus the seasonal flu shot. Monday night she was miserable and had a fever as high as 103.4, I chalked it all up to the immunizations and didn't worry too much. Grace has always responded negatively to her immunizations I think that is another reason she isn't up to date on them.

Anyways she seemed to improve some through the week but on Thursday night her high fever returned along with extreme crankiness and a worsening cough. I called the peds office Friday morning and because Grace didn't have any other symptoms, was told to wait it out till next week and if she still had fevers to bring her in.

Last night in addition to the high fever, Gracie's oxygen need increased from 1/2 liter to 1 liter (weren't wee suppose to be trying to go the other direction?) Throughout the night my mind wandered as I tried to diagnoise Grace because I am not buying a bad reaction to immunizations anymore. My possible diagnoises--1. Swine flu---but she didn't really have all the symptoms associated with this. 2. Blood infection--Gracie has been known to develop infections after surgical procedures, maybe she developed one after her cath two weeks ago? Or 3. Excess fluid in her lungs, resulting in an increase in heart failure.

After three blood tests, a swine flu suction test, and an x-ray we are leaning more to number 3. Gracie gained a little over a pound in 4 days--too much too fast. Plus her x-ray was really hazy. We are still waiting for all the lab results, but both the pediatrician and I think the problem is the fluid in her lungs. So, we have increased Grace's bumex dosages to 4 times a day and added diuril once a day. Also as a precaution we gave her a shot of rosephin today and she'll get another shot tomorrow.

We are hoping that the labs all come back fine, its promising because her white blood count is good. We will get another x-ray on Monday and head back to peds office, if things look great or at least improved we will continue our course and head up to Riverton for our much anticipated GI appointment. If the x-ray shows little to no improvement we will be heading up to Primary's to do an echo to see what her little heart is doing.

Do you ever have those days when you don't know if you should cry, scream, or just throw your hands up in the air and want to give up? I feel like I have felt that way for weeks now and to be perfectly honest it is so overwhelmingly difficult.

Gracie went in for a check-up with her pediatrician. It wasn't a well-child check, he just wanted to see her again to assess how she was doing and get to know her better since we just started seeing him. I have been thinking that there is something wrong with Grace's back and that is why she absolutely hates to sit up, when she sits, she screams and cries as if she is in pain. In the past we thought maybe she had a touch of scoliosis, but everyone told me that there wasn't much that could be done about it so lets not worry about it now. I asked the pediatrician to look at her back and after looking at her back and her curled toes, he wants us to go to an orthopedic specialist to see what is going on and also get a complete scoliosis survey done.

When he looked at her eyes he noticed that she went cross-eyed a bit and asked me if she ever had her eyes checked. I told him that I thought about it because she has struggled with cross-eyedness before, but it seemed to be getting better so I didn't worry about it. He wants us to go to an eye doctorand have her eyes checked because if this goes untreated if there is a problem, she could develop permanent blindness in one eye.

The doctor than said that he wanted me to consider having genetic testing done to see if there is anything else abnormal on her chromosomes to watch for. He just feels that though it won't change much, at least it will give us a better picture of Grace.


I'm grateful for this direction because yes I want to address things to give Grace the best possible care and scenario, but how much more can there be? She has had mild hearing loss, heart problems, lung problems, so many complications from surgeries, and now all of this, it just doesn't feel right. I try not to complain and vent too much about where Gracie is and all that she has to deal with---oxygen, feeding tubes, delayed development, poor growth---because I know so many other children that seem to have it worse than her, more life threatening conditions, but come on already, where is Gracie's break? When is it her turn to be able to excel and be a "normal" kid?

In posting this I don't want special treatment, I just needed to get this out and it is more cathartic to do so this way. I know that Grace is doing amazingly well for Grace and where she has been. I'm grateful for the little accomplishments she makes daily, I just love her and worry about her and if I can give her all that she needs to succeed in this life. Can I fulfill her medical needs and also help her have some resemblance of a normal childhood? Amidst all that is going on with her, will I be able to help her see how marvelous she is and how despite her medical conditions she isn't any less important, any less needed, any less capable of living a fulfilling and worthwhile life?

Halloween

Halloween has always been Jason's thing, but this year he had a cold, so he got to stay home while I took Morgan out. It was so much fun, Morgan loved going door to door and after each house would say, "just one more house!" The first few houses she didn't really know what to do, she said trick or treat and after she was given her treat, she thought she needed to give a treat back, so she pulled out a sucker and handed it to the woman at the door---it was the cutest thing ever. However, when the woman refused the sucker, Morgan realized that she didn't have to give anything away, and became even more excited to go to the next house. When her bucket began to get full, she stopped and shouted with glee, "Look, its filled to the top!"

It was late and I didn't want to expose Grace to so many people so she stayed home, in fact she had to get ready for bed way earlier because our cardiologist sent us a holter to monitor Gracie's heart for 24 hours. But that is another post...

Grace did however get dressed up earlier in the day as a little cow. She was the cutest little cow ever.