Isaac was fairly content this morning waiting for surgery.  Of course once he realized we were not giving him a bottle his attitude changed a bit.  We spoke to his Plastic Surgeon, Dr. French, before surgery and she said she had been thinking a lot about Isaac.  She wasn’t certain that he needed to have a palate repair at this time.  Isaac makes it hard for anyone to get a good look at the back of his mouth.  We decided to have her get a good look at his palate after being put under and determine if he in fact needed a repair.

Early morning bed head

We were able to take Isaac back to the OR around 8:15am.  We then went to sit in the waiting area, knowing we’d hear from Dr. French or the OR Nurse on whether or not the palate surgery was taking place.  Well about 15 minutes later Dr. French came out to let us know that she got a good look at his palate and he does not need palate repair at this time.  What a relief, this kid can still enjoy his bottles.  His bottles are his comfort and had he had his palate repaired he would not be able to have a bottle for 2 to 3 weeks.  Prayers have been answered!!  Heavenly Father sure has an interesting way of testing us, as this is the second time we’ve prepared ourselves for a surgery and it was not needed.  It definitely proves to us that his Doctors are providing the best care for Isaac and his development.

As for his Syndactyly release, Dr. Scott released his pinkies today.  We had thought it would be his index fingers, but he decided to start with his pinkies.  His hands are wrapped in Coban and he will keep those on for 3 weeks.  We originally were told he would have full casts.  We will not need to do dressing changes for the first 3 weeks.

Since Isaac only had hand surgery today, we are able to go home after spending a couple of hours being monitored in recovery from anesthesia.  We are excited to start 2016 outside of the Hospital!

  I had my last treatment of chemotherapy today.    I was a bit nervous I wasn’t going to be able to get it as I spent the weekend in the hospital.

I am so ready to start healing and returning my body to normal, if there is such a thing! Hoping the next few days are nothing like last week. 

My last chemotherapy treatment

After my treatment last Tuesday I felt pretty good and then by Wednesday afternoon I had nausea and was vomiting.  I could not keep anything down.  Zane took me to the ER on Friday night.  They ran labs and my kidney function was low and my magnesium was low.  I ended up being transferred to the hospital and admitted.  Saturday morning my potassium was  very low, to the point that I was .1 away from it being critical.  I was given 6 bags of potassium on Saturday and labs were done again.  After all that potassium my numbers only went up by .1. I had another 6 bags overnight.  Sunday morning my potassium had come up, so I was able to take pills instead of doing the infusions, but my magnesium was low.  By the afternoon my numbers had come up enough that they gave me the ok to go home.  So, Zane brought me home Sunday evening.

Here I was in the ER. I had some major dark circles under my eyes.

I will be getting my abdominal port out on Friday, but I will be keeping the chest port in for the time being.  I will need to have bloodwork done each week to check my chemistry.  If my levels are low, I will have to go in to the infusion center and receive whatever is low.  I will also be getting Scans done again in 3 months.

I feel like I can’t thank everyone enough for their support.  If there is one thing that we (Zane and I, especially Zane) usually don’t do, is ask for help.  We have no problem giving of ourselves to help others, especially Zane.  So many of you have just stepped up and didn’t give us a chance to say “no, we’re ok” and for that we are extremely grateful.  I feel so blessed to have such wonderful Family and Friends.  Thank You and We Love You!!

I’m posting the link to the shirt fundraiser if anyone is interested.

https://www.booster.com/eagar4lifesweat

Last Friday I went in for a scan.  My Oncologist decided to have me do scans before my last round so that I can have my ports taken out soon after I’m done with my last treatment.  I was a little nervous of how the outcome would be.  I am so happy to say I received a call back that my scans were clean!  Hallelujah!!  Many prayers have been answered!  We are so thankful for all the outpouring of love and support we have been shown!!!

Today I am starting my last round/cycle of chemo.  So, next week I should be having my last treatment.  What a relief to be coming to an end.  Each week of chemo has brought its challenges.  About halfway through my abdominal port leaked after treatment.  I went back to see the radiologist who put the port in.  He checked the port by injecting a dye in while I was under X-ray.  The port turned out to be fine, no kinks or leaks within the catheter.  Thank goodness.

After the first treatment of my 5th round I had the worst nausea and could not hold anything down for a couple days.  I couldn’t even keep my anti nausea meds down to help.  That was probably the worst week I have had since starting treatment.  By that Friday I was finally able to keep food down.  Thank goodness for my Mom, who came to the rescue to tend to me and help with the kids!  Sure do Love her!

The following treatment came with excitement as well.  I slept through quite a bit of it, but when I was done I got up to go to the restroom and felt off.  I looked at my abdomen in the mirror and realized it was lopsided.  All the chemo and saline was all on the right side of my abdomen.  Ahhh, what the heck.  I showed the nurse, who didn’t seem to concerned at first but then told me to call my Oncologist if I had any problems.  She was definitely concerned, because she called my Oncologists office the remainder of the week to see if I had called in.  A few days after chemo I got a rash on the right side of my abdomen.  I assumed it would go away quickly.  Well, it was still bothering me after the weekend, so I went in to see my Oncologist.  She thought it looked like a contact dermatitis, but her Nurse Practitioner was concerned it could be shingles.  What???  That I do not need in my life at this point.  We kept an eye on it, I took allergy meds, and the rash got better each day.

  
I received this amazingly beautiful quilt from some good friends!!  What a thoughtful gift that will be treasured for a long time!  Thank you Carla, Amber, and Megan!  

 I love checking the mail and getting motivating cards, letters, and drawings!  Thank you!!!

Isaac came home Monday night!  I should have posted this already.

He had surgery on Sunday.  The surgeon went back in and cleaned up the infection in his head.  It went well and he was able to come home Monday evening.  He is on an IV antibiotic, which means every night we administer his antibiotic medicine through his Broviac line.  It has made life much easier for him to be home.

This was my off week of chemotherapy!  It has been very nice.  I still have the weird head feeling, which hasn’t been figured out, but I was on top of the nausea this time.

Working on his escape plan

Snoozing at home!

Isaac Update:

He is still in the PICU.  The breathing tube was taken out earlier today.  They also took out 2 of the five, yes you read that right five, IV’s.  He has been doing great.  Zane was able to hold him today.  He was able to have bottles throughout the day, which always brightens his mood.  He was given a blood transfusion this evening, which is the main reason he was kept in the PICU. 

Before I left the hospital last night we told the nurse that Isaac is strong willed and does not appreciate tubes or masks on his face, so if he stirs or wakes he may try to go for the breathing tube.  This made her nervous, so she decided to restrain his arms just in case.  They did continue to give him morphine throughout the evening to keep him calm.

This morning Zane told me that the nurse caught Isaac trying to pull his breathing tube out with his feet.

 Zane sent me these pictures.  The first two are from last night and the third one is from today.  
   

On a lighter note Zane came home to give me a new style today.  I thought I was going to get emotional when he started shaving my head, but it was easier then expected.  It does throw me off when I walk into the bathroom and see my new reflection.  The mohawk was shaved off after we took pictures.

I was trying to be serious!!

Yesterday I showed up for my second treatment of chemotherapy, but it is my 8th day since I started.  What a day it has been, not completely awful but not great.

I arrive and check in, order what I think I’ll eat for lunch (did I mention I love food), pick a recliner, and wait for my nurse to draw blood.  Next, we wait for the lab results and the go ahead for me to get my chemotherapy medicine.  Today was a close call, my blood counts were fine, but my sodium and potassium were low.  I really need to do better with my fluid intake.  I was given the go ahead, so my orders were put in with the Pharmacist.  Today was supposed to be a shorter day since I would only be gettin Paclitaxel through the IP port.  Last week I received Paclitaxel in my IV port.  However, the Pharmacist had an emergency drug order that came in, so I had to wait a little bit for my meds.  I was done by 2:30, it’s not like I had somewhere else I needed to be.

My lunch came and I was not able to eat as much as I planned.  Food is starting to taste slightly different.  This treatment I decided to listen to music and I was able to does off for a little bit.  I probably slept 20 minutes, but it felt like hours.

After my meds were done they unhooked me, it was tough to stand up, feeling so heavy with about 2 liters of fluid in my abdomen.  It’s terrible walking out of chemo like you’re pregnant, not so much the way it looks, but the tightness from the fluid😏.  One of these days I’ll have Zane take a before and after picture.  Maybe I’ll wear that cute countdown maternity shirt I made when I was pregnant with Isaac. 😂

So far I feel ok, I’ve been keeping up on the anti nausea medicines and try to sleep and get rest.  Last week it was about Sat & Sun that were the roughest for me.  So, I’m hoping to see if I can do better this week.

Sorry, I forgot to take a picture while at treatment yesterday!  So here’s a picture of my “sunshine” mug one of my B.F.F’s game me!!

 
Next treatment is scheduled for June 30, which will be Round 2.