Great News!

We received great news! G-man's excisional biopsy showed no cancer or lymphoma!  We are beyond excited to hear this news! I can't begin to explain the weight that was lifted when I received that e-mail!

We are still waiting on cultures to get back. A general culture came back and after 72 hours showed no bacteria growth.

*sigh* Now I feel like we are back at square one with trying to figure out what is causing all of the swollen lymph nodes all over his body. Don't get me wrong, I am beyond excited that it's not cancer; I've just got more questions! I can't wait to meet with his ENT to re-group and keep moving forward to find the cause.

Thank you for all of your prayers and good thoughts!

G-man's Excisional Biopsy

G-man had surgery yesterday. (read here for back story: When Our Children Are Sick.) We had to be at the hospital at 8:30 am. We didn't find out later that his surgery wasn't until 9:50  am. I was worried at this point. I had a hungry baby that was asking to nurse every once in a while...which was heart breaking. Aside from this, he did surprisingly well waiting! There was a cute little play room that we were able to wait in. Instead of the boring, sardine packed adult surgery waiting room.

We were soon called back to the pre-op area (where they gave him a bear!)


We were met with very friendly nurses and doctors. We were then visited by his ENT doctor who was very reassuring that the surgery is a simple one. I feel comfortable with him as we have an established relationship as he is also our older son's cleft lip/palate surgeon.

The second doctor who saw us was the anesthesiologist. He was very friendly and great with G-man. He did look familiar though; I knew I had seen him somewhere before but I just couldn't pin point it so i didn't say anything. Andy did speak up though and asked him if he got told that he looked like Mike Rowe! It immediately clicked in my brain that it was the show Dirty Jobs I had recognized him from. He laughed and said that he got comments all of the time. After chatting for a bit he ordered some relaxation medicine for G-man so that the would easily go with him to the OR. It was heart wrenching watching the anesthesiologist walk with him to the OR.

From the time he left my arms, to the time we were by his side again was a little over an hour. The wait really wasn't that bad. My husband had a prescription filled at this facility (one we don't normally visit); so that took the first 20 minutes or so. We then headed to the cafeteria to grab a bite to eat. By the time i was finished with my sandwich the ENT doctor was calling me. I ended up missing the call because my phone wouldn't recognize that I was swiping to answer! He left a very nice voicemail that everything went well and that he did has "a lot of swollen lymph nodes and they took a few to send to pathology." He couldn't stick around as he had to head back to his regular facility. He took time out of his normal clinic day to come do Grayson's surgery on a day that he normally doesn't do surgeries! So, after listening to the voicemail, my husband and I quickly head back to the waiting room to be reunited with out sweet baby.

Our oldest son was born with a cleft lip and palate. In his 8.5 years he has had 7 surgeries. I thought I was used to the whole surgery process. I've gone through it all before. (with my oldest son and my husband) The one thing I forgot was how babies look when they are still in the deep dream state of anesthesia after surgery.

Our little mister doesn't normally just lay on his back like this:




I admit there was a moment that had to catch my breath because he looked so lifeless. That was a little irrational as the doctor had just spoken to me about how well he did. I pray that I never have to see Grayson like that again.


I am so thankful that he has bounced back to his normal self quickly! The pain of this minor surgery will quickly fade from his memory; unfortunately the worry that comes with awaiting test results will remain with me for 1-2 more weeks.

When Our Children Are Sick

It is so tough when a child is sick. It's even harder when there aren't any answers to WHY the child is sick.

My youngest son, 16 month old, G-man, has Chronic Lymphadenopathy (swollen lymph nodes >1cm for longer than 6 weeks.*) I first noticed a small lymph node on the left side of his neck back in October while I was playing with his beautifully fluffy strawberry blonde hair.


Around this same time my other children were sick so i assumed he was getting sick as well. I didn't give it a second thought until we all came down with strep throat at the end of October. On Oct. 28th me and my two older children were diagnosed with strep throat. At the kids' doctor's appointment G-man was diagnosed with a double ear infection. I brought up his swollen lymph node to his doctor and we both agreed that it was probably related to his ear infection. We then started a 10-day course of antibiotics.

A few days later his neck exploded with swollen lymph nodes. I called her back and she still thought it was because of his ear infection. After the course of antibiotics was done his lymph nodes continue to grow and multiply. At this point, my mama bear starts to show up. There is something else going on. I pushed for blood work and oncology. He had blood work done 4 times (once at birth and 3 times since October). The first two times in November were all within "normal" range and consistent with the numbers done at birth. The third time, Dec 5th, there were lots of changes in his blood work. It concerned me because the rest had been consistent. Even though the change was still in the "normal" range, I was concerned. the doctors have all told me not worry about it. I'm one of those that thinks every person has their "normal"

I met with the oncologist...I anxiously waited for this appointment. I thought MAYBE I would get some answers or a "it might be this...". Nope. All I got was "I'm 85%-90% sure it's not cancer." Which is great, but also frustrating at the same time.

I WANTED ANSWERS!

What is going on with my baby?

I finally requested a referral to see our ENT doctor. (I couldn't just make the appointment because this was his first time seeing Dr. P.) Dr. P is wonderful. He has done my older son's cleft lip/palate surgeries for the last 5 years. I met with him and FINALLY a doctor with a plan.

<rant> Instead of all of the other ones who couldn't give me answers to what is going on with my son and never had a plan to move forward. They wanted to leave it as "We tested for this, this, this, and this. They are all negative." OK, great, but that doesn't answer why my son has chronic lymphadenopathy. </rant>

During our appointment with Dr. P we realize that G-man was never tested for cat-scratch disease.

I start thinking "Oh! Great! That HAS to be what is going on. Simple enough, just let it run it's course!!"

Nope. That's not it either. *sigh* Back to square one.

So now the plan is to do an open biopsy. They will make a small incision and take out the largest/most abnormal node and send it off to several departments for examination. Hopefully after this point we will get some answers.

I hope and pray that it is nothing serious. Some may say that I'm over reacting. I'd rather be too cautious and it be nothing, than be so laid back that we miss something.

Having a sick child and not knowing how to properly treat it is leaving me a bit helpless. Which may be why I'm advocating so much for figuring out what this is. I've had experience with misdiagnoses before, I don't want it to happen to my son.

*Coughlin, Andrew. "Pediatric Cervical Lymphadenopahty." Utmb Health. Utmb Health, 24 Sept. 2009. Web. 15 Dec. 2015.

*Read about his surgery here: G-Man's Excisional Biopsy

Being a mommy...it's not the only reason I'm tired 24/7

After becoming a mom everyone and their mother told me I would be tired forever.

For.EVER.

ugh.

That didn't sound fun but I dealt with it because I loved my baby...fast forward to 8.5 years later and 2 more kids later and I'm more tired than ever!

I always chalked it up to the sleepless nights. People would tell me I need a sleep study for sleep apnea. (Which I did but the test was inconclusive and I didn't want to do it again!)

Finally, I contacted my doctor for some blood work to figure out what is wrong with me.

My youngest is now 14mo old and I'm getting a little more sleep; although, by 11am I am falling asleep while playing with my kids. This is not right. I should not be this tired.

There were times I napped while the little was napping that the older kids would wake me from a nap to ask me a question...I started falling asleep in the middle of my sentences.

I could NOT stay awake. I did this several times to my son, even when just relaxing in my recliner. I was so tired I physically could not keep my eyes open.

I kept thinking "Stay awake! Open your eyes! Why can't I form a coherent sentence? Why does it sound like my speech is slurred? I know I haven't had any wine yet!"

I'm still working with my doctor to figure out a bigger picture, but in the mean time she is treating me for iron-deficiency. Which causes chronic fatigue. It's hard to explain what this type of tired is to people who are just tired from a late night. It's hard to explain it to people who are not suffering from iron-deficiency/chronic fatigue.

When I say "I'm tired." I'm not saying..."Gosh I had a late night, I'd really like to take a power nap and be good for the rest of the day."

It's me saying: "I literally can't keep my eyes open anymore. I am going to endanger myself or someone else if I don't sit down or go lay down right now because I might fall asleep and fall over."

I have to FIGHT these sleepy spells. I splash water in my face, do jumping jacks, sing at the top of my lungs while clapping. Anything to try and get my blood pumping and catch that second wind.

Sometimes most times I lose. :/ It's hard when I know my children need me or want me to read them a book or sing them a song and I physically can't.

I'm learning to take pro-active steps everyday. Most days I forget, but some days I'm really good at taking my iron supplements/vitamins/walking. Reminding myself that I feel better, even for a little bit, after doing my daily morning routine helps to motivate me to continue with it.

Hopefully this phase of my life will pass soon. In the mean time, I will continue to just keep swimming.

Little Mister broke his arm. :(

Friday morning around 8:30am I told the kids to play in their newly cleaned room. Three minutes later I hear screaming...from my son.

(I thought that he landed on a toy and scratched his back.) I laid him on his back and tried to calm him down to find out what happened. 

That is when I noticed this.... 

*WARNING TO SQUIMISH* 

this is a picture of his crooked arm.

   

I quickly covered the rest of him in a blanket just in case he got cold. I grabbed my phone to call 911. Andy had the van and I didn't have a way to get Eli to the hospital. I then call my friend up the street and ask her if she could take Charlie for me. Then I call Andy and tell him what was going on. 

 The fire truck arrived before the ambulance. They used one of my cardboard boxes and splint his arm. One of the medics kind of irritated me because he was like "oh he'll need surgery and we need to get him to UCDavis." Even though I explained that we are Kasier patients and need to be taken there. He insisted on UCDavis, I didn't feel like arguing and just wanted my son to be taken to the hospital. (Insurance will cover it, but I don't know if we'll have to pay OOP and then get reimbursed). 

At the same time they are taking Eli out to the ambulance, Andy gets home. So I leave with Eli and Andy stays behind a few minutes to make sure my friend has everything she needs for Charlie. 

 The ride started out like this:

 

and ended like this:

  

 We then got to the hospital, he was given a room right away and seen by some doctors right away. They were all very nice and informative. 

 

 He got some pain meds... 

 

We then went and got an xray done of his arm. The lame tech asked him if he could flatten his arm. umm NO, and move your hands because you aren't going to try and do it for him! his right arm on the table thumb up, like a karate chop.

  

 Then we waited around

 

 

 When one of the nurses walked out he said "She sounds like a man." LOL :embarrassed: I'm SO glad she didn't hear him. 

Then it was time for them to get ready to set it. They gave him heavy sedation so that he would go to sleep and wake up and not remember then setting his arm.

 

 

Andy and I walked out of the room for a bit. Neither of us wanted to stay. Well I originally wanted to, but then Andy suggested that I not stay. We came back to a freshly casted sleeping prince. 

 

 When he woke up he told me that he had a dream that he went to outerspace. He didn't see any martians, but he did bring me back a moon rock. He would wake up for about a minute and then conk out. He woke up saying different things and singing different tunes. He woke up one time and sang "God is bigger than the boogie man." and then went back to sleep. lol 

 After spending 9 hours in the ER, he was ready to go home!

   

 Asleep for the night...hopefully.

 

Surgery #5

On August 30th, Eli had another surgery on his cleft lip/palate. 

They took away some of the thickness in his nostril and re-opened his nasal cavity. The surgery last time left him with a tiny opening to breathe through. That was 2 years ago. I had NO idea that he had a hard time breathing through his nose. He would always wake in the middle of the night complaining about his nose, mostly when he had a runny nose, and I would get frustrated because...

"IF HE WOULD ONLY LEARN HOW TO BLOW HIS NOSE!!! "

I said this several times.

(go ahead and pass me the mother of the year award)

They also revised the scar on his lip and the space between his nose and lip. They also took a piece of cartilage out of his left ear and placed it at the base of his nostril so that it wouldn't collapse. Therefore, he has an incision behind his left ear to get skin to cover the part they took in the front of the ear. Poor baby.

Without further ado...pictures in the hospital.

His nurse, Kathy...which he refused to say...said her favorite color was green as well!

Here, she is explaining the O2 monitor. She said that it was like a little hug. I pointed at him and said "E.T., phone home." He looked at me like I was crazy.

We had a little surprise for him...we bought him a Leapster Explorer. He was beyond excited! We also bought him the Ben 10 Ultimate Alien game....which was a HUGE hit.

Here are some after he got his "happy juice" to make him calmer. When they took him back the anesthesiologist was awesome. Eli started to cry, but the anesthesiologist raised his bed and asked Eli to hold on to the invisible steering wheel. Then he asked him to step on the gas pedal. When Eli did that, the bed started to move so he got to drive himself into the OR.

Here he is when we first saw him after surgery. My poor little guy.

I can't believe how much he has grown. This was his first surgery at 2.5 months!

Warning:

Bellow this text are some pictures of his incisions.

Here he is after we got home. He felt awful, but he was back to his normal self the next day.

I can't believe how GROWN UP he looks in this next picture. he looks WAY older than 4yrs 4mo!

He is my brave little man.