We'll be home for Christmas...

And probably miserable :(

Jayden tested positive for the flu this morning...We had to skip the flu shot for him this year b/c his seizures were not controlled. I have no idea why things are so bad for him right now. Why can't he catch a break. It just seems like a nightmare that I cannot wake up from. He's still having seizures everyday and b/c of that, the Dr decided that it was best for him not to take the Tamiflu b/c it does have seizures as a side effect. She warned us that his seizures will increase b/c his immune system is fighting off the flu. So that will mean multiple seizures a day. My poor baby. We have to keep a close eye on his temperature and just try to keep him comfortable, but otherwise it has to run it's course.

Thank you Dr. Bishop!!

Finally some answers about the GI issues and what was considered "picky eating" by other professionals.

J had his GI appt today to follow up on the foul smelling, sandy stool. Dr. B walked into the room and sat down and said "Okay, so fill me in on what's been going on." I love that about her. She is prepared to listen. We should be able to say the same about all MDs but unfortunately we can't. I told her about the stool being sent of by his pedi b/c it was very foul smelling and that they suspected giardia. However, the test came back negative so they referred him to the GI. She told me that giardia is recurrent and will not always show in every stool sample. One sample can be completely negative and the next can be FILLED with the giardia bacteria, so she wanted to just go ahead and treat him (like his pedi wanted to do). She then asked me about his diet and I told her about his eating habits and that he only eats bread, fries, processed nuggets, and yogurt on a daily basis. I also told her that I have been told for months now that it's just a phase. She disagreed. She said that even with a phase or picky eating the child will still get a variety of foods within a month, but Jayden's variety doesn't change and it all seems like its texture specific. She also went back into his chart and saw where he had a hard time starting solids as an infant, so he has always had a feeding issue. While I was talking to her, Jayden signed "eat" and I pulled out a granola bar for him and started giving him pieces. Before he asked to eat he had been running around the room like crazy, but to eat the pieces I was giving him, he sat down and stared into space while chewing. So the Dr just watched him chew. She said that he was trying way too hard to chew the little pieces I was giving him and she could tell that he wasn't able to chew it enough to swallow it without pain. I always knew this was an issue. So she looked at me, almost apologetic, and told me that he is going to need a battery of tests done and then she wants to put him in feeding therapy. Honestly I wanted to just jump up and hug her b/c this has been going on for far too long and I was tired of being made to feel as if I am the crazy person. She said that there is a chance that his feeding issues could be behavioral, and feeding therapy would help with that, but before she puts in in FT she wants to make sure that it's not painful for him to eat before we force him to do so. From watching him, she thinks there may be pain associated with feeding. So tomorrow morning he goes in for a barium swallow. Then after that they will schedule an EGD with biopsy. I feel so uneasy about my baby going under anesthesia, but at the same time, I am so ready for them to figure out what's bothering him. I'm also upset that it has been ignored for so long. Her main concern is that he may have scarring and narrowing of the esophagus, which would require extensive care and multiple surgeries. We are going to take this one day at a time. I walked out of the clinic so relieved that someone finally listened to my concerns and that my son is finally going to get some help and relief. Keep him in your prayers please and I will surely keep you all posted!

I think I'll have some lemonade....

Well, like they say, when life throws you lemons, make lemonade!! My surgery went well this morning and I'm home resting now, although in some pain which I'm fully aware will get worse once the anesthesia completely wears off. That will make for an interesting car ride tomorrow :( I'm hopeful (prayerful) that the pain will get better by morning and I'll be fine, but I know I need to prepare for the worse. Or truck has two rows in the backseat. Traveling with us will be my parents, my niece and one of my nephews, and Daddy, J, and I. We are going to try and install J's carseat in the backrow and I'll have half of that seat to stretch out on. And if all else fails, my pain pills are my new BFFs!!

J woke up really early this morning, almost like he knew I wasn't there. My friend was here with him and fed him his breakfast. She said after breakfast he played a bit but she could tell he was looking for me. He kept saying "Mom?" "Mom?". And then he satrted to get tired and had a meltdown and was crying out "Mommaaaa!!" My poor baby missed me!!! My friend fed him his lunch and the he fell asleep. He was asleep when I got home from the hospital and I can't wait for him to get up so we can cuddle. The best part about being the mom of a momma's boy!! I love it. He will help me to heal faster I'm sure! I love my boy!!
"

Wicked!!

J has his own broom and dust pan b/c he LOVES to help me clean the house. Today I walked in the living room and caught him doing this!!!




Well tomorrow morning I have to have an outpatient surgery for a bulging blood clot. Yep. The day before our trip to Disney. The surgeon said it is not safe for me to travel such a long distance with the blood clot b/c it could rupture. So say a prayer for us!

Sick Day

I woke up this morning in severe pain. Nauseating pain. I got J out of his crib and had to put him in bed with me for a few minutes, hoping the pain would go away. It didn't. I called my mom while I fixed J's breakfast and she told me I needed to go to the Dr TODAY! Well I usually don't go to the Dr much, and the primary Dr I have on my tricare insurance is AWFUL, yet I never got around to switching. The way Tricare works, they won't let you change your PCM immediately, unless the Dr moved or we moved. Otherwise, it takes 30 days to change the Dr. So I bit the bullet and called the Dr's office for an appt. Here's how the call went:

Me: Good morning. I am calling to see if Dr. C has any available appt's for today.
Receptionist: Dr.C's father died so he's out and we don't know when he'll be back.
Me: Okay, is anyone seeing his patients while he's out?
Receptionist: No.
Me: So what are his patients to do if they need to see a Dr ASAP or have an emergency?
Receptionist: Emergency?
Me: Yes ma'am. He is a Dr correct?
Receptionist: He's a clinic Dr.
Me: But clinic patients have emergencies.
Receptionist: Go to the ER.

I had to hang up on her b/c there was so much that I could have told her but it wasn't worth it. That clinic does not care about it's patients. I am so angry and I will probably take this a step further and report them. I called Tricare and explained the problem. Tricare called and they actually were able to give Tricare a date on when he'd be back, but she told me that they had no idea when he'd be back. He wouldn't be back until the middle of August so Tricare allowed me to switch Drs. I saw a Dr and I have an ulcer. Ouch.

Hospital Stay

Well, on Wednesday J took a turn for the worst. Fever, crying, and he stopped eating and drinking. Also, the nurse got his results from his bloodwork on Monday and his iron levels were really low. So he was admitted to the hospital for dehydration and stomatitis, on his mommy's 28th birthday :( His gums were really red and swollen, and very sensitive so he didn't want anything to touch his mouth. It was so sad to watch him in so much pain, but I felt relieved that he was getting fluids through the IV.

It is a chore, having an active toddler in the hospital for days with an IV! Once J got the fluids in him, the next day he was ready to get down and run and play. But I couldn't let him b/c he would get tangled in the IV. He would protest for a while, but it was always easy to get him to just lie in the bed with me and cuddle all day. That's how I knew he was still not 100% b/c normally J would freak out at the thought of lying still for days!! His blood work and body temp went back to normal pretty quickly but the Dr wanted to keep him in the hospital until he was able to eat and drink again. By Thursday night, he still hadn't eaten or drank anything and I was very discouraged. We prayed and prayed and Friday morning, J woke up and asked for juice. I hoped out of bed so fast before he changed his mind! He drank 4 oz without taking a breath! I was so very happy for him! He continued to drink through the day and I made sure the nurse knew this. He was discharged this evening, but not before we both were traumatized by the nurse who decided that he needed a new IV this morning. First, she wanted to try and start on in his foot so that his arms could get a break. Well she thought she found a good vein in his foot and went to insert the HUGE ADULT SIZED NEEDLE into my baby's foot. She missed, but continued to dig in his foot looking for the vein. My baby was SCREAMING. Crying like he'd never cried before. Gasping and screaming MOM MOM MOM MOM :( I told her to just take that out and put the IV in his other arm. So she tried the other arm and the same damn thing happens, she misses his vein and digs and digs, all while my baby is screaming his little head off. I was pissed off b/c he was finally feeling better and now she is putting him through more pain. He was trying to climb off the table to get to me. I started to get dizzy for some reason and I told her "Please just stop. Let's wait until the Dr gets here b/c he may not even need an IV anymore." Then I immediately had to sit on the bed and they had to hand J to me b/c I almost passed out. I think I had an anxiety attack from seeing him in so much pain. After that ordeal, I hugged him until he fell asleep and he slept for 3 solid hours. As soon as he woke up he asked for more juice! I knew then that I did the right thing by asking her to stop digging in my baby's arm b/c he didn't need another IV.

To all the mom's reading my blog, trust you motherly instincts. If a Dr tells you one thing but you feel that there is more wrong with your child, go with your gut. J started getting ill on Friday and we took him to the ER in Memphis with a 104 fever. He was basically given motrin and ignored b/c he wasn't "sick enough". Well had I listened to the nurses there who said just give motrin/tylenol and he'll get better, my baby would still be in pain and probably worse off. Maybe if they would have looked in his mouth on Friday night, he would have been treated sooner and possibly could have skipped all of the pain he went through. It's sad that many Drs and nurses don't put their heart into their jobs. Mommies, don't ever feel that you are over reacting. If you think something is wrong, call the Dr until you feel comfortable and your child gets the treatment he needs!!

Poor J-Man :(

He's really sick, but getting a little better...

Friday morning he woke up crying, which is NOT like him at all. He usually wakes up singing, playing, or saying Mom Mom constantly. So when I heard him wake up whining I knew something was wrong. He felt a little warm, so I gave him some Motrin. We had to leave at nonn on Friday to drive to Memphis for a photography seminar I was attending. We got on the road and J slept like a log. When we got to the hotel (we stayed at the Memphis Hilton and it's awesome!) he was just fine, looking out of our hotel room window at the ducks in the pond, saying WOOOOOOOOOOOOOWWWWW and "kack kack" (Quack quack). I grabbed my things and left Daddy and J for the night. We had a little break in the seminar so I ran to the room to see what they were up to and Daddy had J tucked in bed and he looked very concerned. He said J had been trembling and his skin was burning up :( I took his temp and it was 103. Daddy ran to walgreens and got some Motrin and told me to go back to the seminar. The seminar was done at 11 and I got back to the room and J's temp went up higher, even after the Motirn. It was then at 105. So off to the ER we went. We got there and the triage nurse gave J some motrin and told us to undress him. Then they called us to the back and put us in an exam room, where we waited for a Dr...and waited....and waited...and waited for over an hour. Not one single person came in the room to check on him. I was so angry!! I asked a nurse walking past the room to bring us a form to sign to leave without being seen. She gladly bought the form (one less patient they had to see huh?) and I signed it, while she said that she believes he was feeling better. I had to tone her out b/c I was gfoing to tell her some nasty things b/c my child was NOT properly treated. He was IGNORED! We went back to the hotel and got a few hours of sleep before getting on the road. We stopped for lunch, but J wouldn't touch it. We figured it's his teeth coming in b/c he's cutting 2 molars at once. I gave him some more Motrin and we got on the road. Once we got home J cried NON STOP and grabbed his mouth until bedtime. He even whined in his sleep. Sunday was the same and he was still refusing any food. I was giving him motrin/tylenol around the clock, teething tablets, and anbesol, but nothing helped him. He was miserable and so was I. Monday morning he woke up crying again and had a 102 fever, so we went to the Dr. He fell asleep in the exam room and I peeked in his mouth and saw white blisters all over! It was my first time noticing them b/c he wouldn't let anything touch his mouth! So then I knew why he had been so miserable. The Dr prescribed him 3 different meds for the blisters and a maalox/lidocaine mixture to numb the pain. His gums are VERY swollen and red. The teeth that have been in his mouth for months now look like they are just peeking through the gums, just to give you an idea of how swollen they are. It's so hard to watch him in pain like this. He is so hungry but can't chew, and doesn't understand that. He wants nuggets but he can't chew them. Today he was asking for his fruit snacks. I gave him one and it hurt his mouth so badly! He threw it down and then tried to pick it up again and eat it b/c he really wants it. That is so hard to watch!! I just want to take all of his pain away. Please keep him in your prayers.

Well we did make something out of the 2 hours wasted in the hospital ER...When time is being wasted, what's a photographer mom to do?? Take pictures of course!!






And a little video of my boy being silly even with a fever of 104. He thought I was taking his picture at first so he say "Cheese!" He was eating pretend food b/c he's so hungry :(