Quick Update

I'm sure some of you are wondering what is going on and why I have not posted.  Sorry, but I have been busy and the times I was going to post I was not feeling up to it.

I ran a temp again the week after being home from the hospital and had cultures done on the line again.  All came back clear...Praise the Lord!

I went to the Ortho doctor two weeks ago in regards to the hip replacement and we are just going to keep on eye on the hips with X-Rays every 3 months.  Nothing substantial found to warrant that big of a surgery  Praise the Lord!!

The Neuro doctor discharged me.  He said I have mild peripheral neuropathy and also autonomic neuropathy.  For the autonomic, I could have more testing but even if I did, it wouldn't matter regarding treatment.  I have a low blood pressure and dizziness.

Today we went to Rockford for the Rheumotoligist follow up and she did a cortisone injection in each hip.  Yes, I am sore and hurting, but this too shall pass.

I go Wednesday to Chicago to see the surgeon who placed my pacemaker to have it checked. It is now sitting on part of my hip bone. They are concerned of it having dropped since the leads can pull out of the stomach and get tangled in the intestine or be "shocking" another organ.  We are at a point, I believe, of needing to make the decision of it being placed back up or having it removed.  He will need to be in contact with the Dr's from University of  Chicago so we are all on the same page in agreement of the choice made.  If I have it removed, then I have worse nausea than I already fight is the only thing.In the mean time, I will continue to trust God for my miracle.

So thankful for the strength He gives me day by day.  So thankful for Him being by my side and being so faithful.  So greatful that He cares and understands and will never leave me through all this, but continue to guide my steps.  He keeps pouring His blessings upon me.  I can't imagine going through all this without God on my side and my wonderful loving husband.

Home Sweet Home

God is good...all the time!  On Thursday night, I was admitted to the hospital for pain in my 'Hickman Line' port entry area and up into my clavicle and a low grade temp that I had since Monday afternoon.  The doctors were hoping to rule out a port infection and with much prayers, thankfully it was ruled out.  Not sure if it was phlebitis or not, but it sure hurt (and still hurts).

Anyhow, I was discharged on Saturday and home by 2:30 that afternoon.  So glad to be home and resting in my own bed.  No blood pressure checks or nurses coming in to bring me medicines, or any pokes for blood!:)  I do miss someone answering my call light!  I keep waiting for someone to come.  Ha!  Shane and the kids have been wonderful at helping and taking excellent care of me.

So thankful God gave me strength to make it to church tonight!  It felt so good to be in the presence of God, especially on Easter.  Glad I just don't go to Church on holidays because it would be a long time till Christmas! :)  So grateful for His LOVE and Sacrifice HE made so that I could live.:)

At home in bed for the night and letting the kids do a camp out on our bedroom floor.  Oh what fun.  Hearing them all giggle, just can't help but smile.  SO much to be thankful for!!  I am Blessed!!!!!!

A Few More Things...

I feel like a whirlwind has come through, but so thankful God is my Comfort and Peace in the storm.  I received a phone call from Chicago saying they received a letter from the Rheumatologist and that the report shows that my hips are not in good shape.  I have had pain for the past few years and it has worsened the past 6 months. It is from the malnutrition.  They are concerned that it will break just by walking and requested I see an Orthopedic doc ASAP.  They had me cancel out the knee surgery and focus on the hips.  They want me to have hip replacements to both hips. Both before they break and I fall or before they get worse. I have an appt on Mon.  

Since Monday evening I have had a low grade temp and tenderness around my port site that has gotten worse since last week.  My In Home Care Nurse suggested I see the surgeon regarding it to make sure I don't have an infection.  Went today to see him and not sure if it's a low grade port infection.  I'm on Bactrim right now and if things get worse then get in touch with him, otherwise call him Thurs. and give an update.  So glad I wasn't admitted.  I thought I'd better pack my bags just in case.  I always have a suitcase ready to go just in case I ever get admitted I have everything all together.

     My inlaws are here from Texas visiting us ( I mean the kids). :)  It has been a fun time.  It will be sad to see them go.  Feels like they just arrived. Got a big day planned tomorrow.

Praying I get a good nite sleep.  God has been so good to me and to my family.  I am so blessed!!  Don't want to fail to give Him THANKS for all He has done and is going to do!

Today is tomorrow's past

My what a shocking day it has been -truly!!!  Today, I went to the Chiropractor and had a wonderful adjustment after a rough 2 nights.  SO thankful she's understanding and caring.  

After that, we went to Dixon and had an appt. for PT to fit me with crutches for my knee scope on April 17th.  She trained me on the crutches and walker and then we went to Arthur's Deli to enjoy a salad and baked potato (for Kelsey and Shane) and to waste time since I had 1hour and a half till the appt with Neurologist.

Saw the Neurologist at 1:30.  He is a very nice doctor and it's looking like my nerve issues may be autonomical neuropathy.  He wanted some nerve testing done which would take about an hour.  Since we were already there and they were able to do the testing right then, we, or should I say I went to it.  Yikes and oww are two words for that kind of test.  Not positive but I think the test was an EMG study.  All she did was my right arm and right leg.  I just wasn't prepared to feel exactly what I felt.   I felt like a kid again sticking the Operation game tweezers into an electrical outlet. BUZZZZZZ!:)  Get the idea?  On the 16th of April, we go back for the results on it and discuss the next step. SO thankful tomorrow's a new day.
       
Shane preached tonight the and his title was "Getting Passed The Past And Pursuing The Promise'".  It was very good.  His text was Phillipians 3:13. I enjoyed it and want to get the CD of it.  Was a bit tired from today and didn't get to rest like I wanted to have, so I probably missed a few points.
           
Hard to believe our oldest is turning 11 on Friday.  Worked a full day with her in me till I went to the hospital that night having my water leaking.  We wouldn't be leaving till I had a baby in my arms.:)  The fun and anticipation of new parenthood.  Kelsey is growing into a beautiful young lady that loves God with all her heart and has always had a tender heart towards life.  So blessed and thankful God blessed us with her as our sweet miracle from Heaven above.  May God continue to guide her steps and may she always seek His face and His will.

Appointment update

         I'm sure some have you are wondering if I'm ever gonna update this.  The answer~YES!:)    We have been busy and I've been waiting for some Doctor's to call back.

My appointment on Monday with the Rheumotologist was uneventful.  She felt a few spots and said that I had Fibromyalgia and osteoarthritis in both hips.  She offered me a cortisone shot in the hips, but I'm going to wait a month before doing that.  We are not treating the fibromyalgia at this time.  I did notice that a good night's rest made a difference in the pain of the muscles that she had pushed around on.  The bones still ache but praying with the supplement of the vitamin D that will help.  So I am to follow up with her in a month or so.

Had the appointment with the Ortho Dr for the knee.  No change there.  I did have a few good days with the cortisone shot but that was it.  He told me that gave him a lot of info right there.  He feels that the pain is caused by something structural in the knee and needs to be scoped.  He gave me the option of doing it now, or waiting a month or so.  It's a 50/50 chance either way.  He just said he hates to see me wait and endure the pain when he's hoping the scope will help eliminate the pain.  I am waiting to hear back from them fora date,  but I'd like to see if it could be done the second week of April or so.  We'll see.

We have had some wonderful services in church lately and the Lord has moved in a marvelous way.  I can't wait to see all that HE has in store for us! So thankful for the power of prayer.  I hunger for more of Him.  To know Him more and desire to read His Word more, seeking His will and not my own.  So glad that my life is in my Creator's hands.  The One who knows me, cares for me, and loves me just as I am.

Sorry it's a quick update, but it's getting late.

Update

Just wanting to give an update on our latest events.  I went to Chicago Feb. 29th for a follow up from the G and J tube switches.   No good results from that switch, so now we are waiting on  a phone call from Chicago regarding a date for a nuclear scan of the intestines.  Dr. Semrad (GI) would also like to do a deeper tissue endoscopy biopsy the following day after the nuclear scan.  So we may be looking at a hotel stay when we come for the nuclear scan.  She also would like to do a full thickness biopsy sometime down the road.  She also mentioned that she would like me to see a Neurologist to see if there is any neurological disorder that she could be missing, along with a Rheumatologist for all the bone pain.  


On the 19th, I see the Rheumatologist in Rockford, and on the 20th I see Dr Gabriel for a follow up with my knee.  


I am so glad that my hope is in God.  God is so faithful and has never left me.  So glad I can place my cares at His feet.  I don't have to fear because He holds my tomorrow.  


We had a very exciting weekend .  For those of you who don't know, we added to our household 6 more feet.  We let the kids pick out a chicken each to care for.  They are only going to have them for a couple weeks.  My how they are getting bigger.  They each choose ones that were all unique in color to tell them apart from each other. Kailey has a yellow chick, Kelsey's is tan, brown, and black, and Matthew's is a grey and black.  They love to eat and make messes.  We take them out and hold them in our palms and they snuggle in and go to sleep within a few minutes.  It won't be too long before they have to go, with their chirps getting louder and them growing.  We've all been enjoying them.


I'll update again soon, but wanted to get a post on here to get it going.  
  

In a nutshell....

In April of 2009, I developed an unexplainable gastrointestinal illness that took me from being a very active lover of food, participant in home, church, and community at 145 pounds down to a weakened 88 pounds.  After several visits to several doctors, it was determined that my case was an unusual and unexplainable case. 

Thankfully, in May of 2010, God opened a door for us and a new team of doctors came on board and introduced a new series of testing that discovered what exactly my illness was.  The revealed condition is called Gastroparesis, an incurable disease which causes the stomach to become paralyzed and unable to process food.  After failed trials with medications from around the world, a feeding tube was placed in my nose and went to my intestine to bypass the stomach.  After  about 2 months of tolerated feedings and some weight gain, they decided to place a jejunostomy feeding tube directly into my small intestine.

In September of 2010, I was seen by a surgeon specialist at University of Illinois at Chicago and I was able to receive a gastric pacemaker in order to electronically stimulate my stomach.  For the first month after surgery, things were really improved.  I was finally able to eat REAL food!  I even had a Blizzard on my home from the hospital!  Unfortunately, the honeymoon only lasted for about a month and the symptoms were coming back.

Months went by with just maintaining the feeding tube and trying my best to keep going.  In June of 2011, a gastrostomy tube was placed in my stomach which allows me to vent the gastric juices and whatever does make it to my stomach.  This was to placed to prevent me from feeling nauseated and having to vomit so often.

In the fall of 2011, the doctors placed a port into my chest wall that allows me to receive ‘TPN’ which is a bag of IV fluids made specifically for me to allow me to get the nutrients, fats and vitamins that my body needs.  We had also found out that the Gastroparesis had moved from my stomach and was now also in my small intestine. 

I am now at the point where I am unable to tolerate any ‘j-tube’ feeds and solid foods and have been totally dependent on the ‘TPN’.  Now even a glass of water makes me sick.

There have been several ER visits, tests, chest tubes, blood infections, severe allergic reactions, and even close calls where I wondered if I was going to live through the day.  But God has been faithful through every trial that I have been through and this trial is no different.  God has given me strength, determination, and a great support group of church, family, friends, and even people that I’ve never met.  I am a believer in miracles and I am trusting in God and his timing in my life.