About Me

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Born in Atmore, United States
Wife & Mommy. I have a wonderful husband who loves me deeply and three great kids. I believe in my Creator who guides me everyday. My favorite interest are stage/theatre, music/singing, antiques and art.

Thursday, August 14, 2014

St. Jude week

So...I've wanted to sit down and write, but who has time for that?
Updates and upcoming events are as follows.
 Ivee has struggled with congestion. It isn't really mucus, it's just thick, thick saliva. I think she has some allergies, and we used a prescription allergy spray on her. However, I don't think it helps. After the next few events, I'm going to push her to be allergy tested. Obviously, I will have no food allergies, as she doesn't eat by mouth, but seasonal allergies HAVE to be in the picture. For those who do not know the full understanding of her issues, the gist is:
Paralyzed vocal chord=aspiration of saliva
Aspiration of saliva=oxygen absorption problems in lungs, and enzymes getting into the lungs from the saliva that doesn't belong there
She has had to have breathing treatments throughout the day to thin secretions, and then has to heave to get all the secretions up as mom suctions them out with a machine. This all in an effort to keep her oxygen levels in the 90s (if you don't know, we all breath at a 97%+ oxygen intake as normal people, even on our bad days). Ivee breaths at 90-93 on a daily average, and when congested she stays around 88-89. These stats would put most of us in the hospital. She had pneumonia, for the first time ever, in June and the child is still struggling to get back to her normal. She has had a few xrays since in TX, and there has been something on the film to concern her pulmonologist. He believes it might be scarring from a previous illness, but is not certain without the following...Friday she had a CT with contrast dye Friday. We will receive results next week. 
We are in Memphis for MRI cancer scans and other check ups. She is a VERY hard stick, and by the grace of God, someone invented something called a J-Tip so she doesn't feel the shot. Every hospital needs these things! Emla creme and freeze spray are great, but J-Tips have them beat! She was stuck twice today, the first time she flipped, but the second time she was brave, as she keeps stating. We are, once again, praying for clear and stable scans. She is currently in MRI and we see Dr. merchant this afetrnoon. 
Ivee has a tonsillectomy/adenoid scheduled in Sept. She sleeps with a Bipap and oxygen at night, and does have some obstructive sleep apena. (This is quite evident when I am sleeping with  her  at night and she rolls on her back) I know she would benefit from the surgery, but oxygen is a problem, sedation is a problem, and that tiny little mouth is a worry.
PRAYERS- It's what we need, what we always need. Taking care of my little girl is a full time job, and not one that I can call into if I'm sick, tired or need a break. She is our families blessing, but it can be a huge struggle, especially in seasons like this one where I can't seem to do much to help.
I adore all of you that check in, pray and love on us. YOU are a blessing!!!

Friday, June 27, 2014

Oh, wait...the Foleys didn't drop out of existence?

If anyone still comes here to see if I'm still alive and blogging, I apologize. The thing is, I have a lot to say and just no time to sit down at my computer everyday to type it. I feel that words fall flat so many times, and as someone who loves literature, story telling and wants to paint a picture with every word, it is difficult to pull myself away from the daily activities and give into that desire to express my feelings. 
What makes today different? Perhaps it's the fact that it's day five of Ivee being hospitalized for the first time since her last battle with cancer in 2011. 
(Ivee's first night here at the hospital in TX. Mom had just returned from a five day trip with Brittney and friend and came home to this)
Since Ivee's last tumor resection, her lungs have been taking a slow and steady decline. As many of you know, she lost use of her vocal chords at 7 months of age in 2006, but she received use of the left one shortly after that initial brain tumor surgery, and to the doctors surprise, three years later her right chord was moving some. However the tumor resection in '11 knocked both chords out again, and though the left recovered it is not at it's prior strength, and the right never moved again. 
With brain stem/spinal chord pressure and adema (cyst like fluid) in her brain, along with six months chemotherapy and 63 total doses radiation to her brain, Ivee has balance problems and left side weakness, most prevelant in her tongue, if you ever want to see proof. She can walk unassisted now for almost two years without a walker, but she easily falls and has to be quite careful, and has trouble with her gate and right leg. Children who are not aware of her situation, or let's face it oblivious to their surroundings, can be quite an obstacle for her and unfortunately dangerous. I've had to at times, even in front of a parent, reprimand nicely a child who was causing an issue for her. By God's grace, I haven't meet a parent who was upset at me for having to do so. Ivee's personal struggles are not with her unability to do things other kids can do, for she doesn't see her differences, most of the time. She will gladly tell any waiter/waitress or anyone who offers her food, that she is g-button fed. If you're ever so lucky, she'll show it to you before I can stop her from doing so. She will try to keep up with the best of them, trying to walk, or even run, dancing, doing choreography, she will try it all, and does well, except for the running part. But I digress. 
(Doing in hospital PT on the third day. She danced to "Don't Stop Believing" by Journey) 
The one area she can't seem to make progress in and has been declining is her lung strength. We had her tested during this hospital stay, output and input breathing are controlled by different muscles for those who may not know. And not to my surprise, she has great in take volume, but her output is quite below average. This is why you can't here or or sometimes understand what she is saying. We can be in a slightly crowded mall, not too noisy, and I won't be able to hear her at all with all the other noise. This actually happened once, while getting ice cream. As we left the store she was in absolute distress crying, and we didn't notice till we were a but down the mall hall. We hadn't heard her ask for a bite of chocolate to taste test. Broke my heart cause she said, "I was trying to talk to you...(sob,sob)... But you couldn't hear me...(sob,sob)." She doesn't eat by mouth, and really has no desire, which is great, cause she aspirates. But every once in a while, she just wants a taste.
Aspirating is actually our greatest concern for Ivee now. We don't believe that is necessarily what landed her in the hospital at this time, but it is possible that the bacteria in her saliva has lead to her first case of pneumonia, double pneumonia that is. We have seen quite a dramatic decline in her lung health for the last year. In the very beginning of our meetings with the pulmonologist, a tracheotomy  was mentioned, one doctor quite adimate about her needing it immediately, prayerfully the other doctor wanting to exhaust all other options first. Thankfully, the doctors here in Houston are wanting the same, putting a trach as a last option. 
(this picture I took yesterday after she had to be stuck for a seventh time to get her fourth IV. They either kept blowing out or sweeping up) 
So, here on day five, I sit quite sore from sleeping on a hospital couch next to my little girl, an all too familiar sight for the last seven years. I look forward to sleeping in my bed tonight as my husband jumps in the ring for me, but my poor spirit is worried and concerned for what we must do for Ivee. It's not an "unnatural" worry, just a constant reminder of what I learned on December 18, 2006. I am never, nor will I ever be in control, I will never know the future or the outcome of even the smallest problem. All I can do is pray, and my prayers include asking that this be the last time. The last hospital stay, last worry, and that the doctors will find a fix or God will just heal her. I sometimes wish I could punch something, or maybe someone, if I'm quite honest. The only thing harder than watching your kid go through all that I have, is watching them die. At times, I was watching just that happen, and sometimes I realize, I might still be. Not a quick death, if you want to call it that, where cancer just becomes her, but one where what cancer left behind slowly takes her health bit by bit. I know it's a morbid thought, and I don't have it often, but in this post I'm just being honest. I feel very inadequate to be her mom sometimes, wishing I knew how to do more for her. 
Sigh....
But...I have not lost hope, nor have I lost praise for The Lord in all this. I know that human existence comes with suffering, but I also know it comes with perseverance, endurance and need to finish the race, even if it's just crawling or inching our way across the finishline. And today, we are weaning her off oxygen during the day, praying that our new night time regime of BiPAP and oxygen will help her once again dodge a tracheotomy. 
(She's told me she wants to play violin. I brought her a play one back from Cozumel. She is playing along with Imagine Dragons "Radioactive" today) 
Today she is feeling better though quite congested still. We pray they will let us take her home tomorrow. And let me say this as well. It seems that I only blog the hard medical and hospital related stuff, but The Lord is doing much for us as a family since we've moved to Houston. I feel convicted that I need to share those things. So, as an accountability to myself, I am putting out here today. I will blog about the great things happening for us as we are all beginning new and even maybe scary (for some) milestones in our lives. 
Thank you to all of my friends, family and even those who just love us though we've never met. Thank you for your prayers and encouragement and just letting me vent. 

Monday, February 03, 2014

So...I haven't fallen off the face of the plant....

I did however move to Houston, Texas three weeks ago. I then drove 10 hrs to Memphis yesterday, in cold and rain for Ivee's MRI scan, which she is currently in right now. Ivee meant to update, but I haven't had time between getting a kid in a new school. Unpacking boxes and taking care of Ivee and other things. 
She had a meltdown getting her IV this morning, but other than that she handled it better than last time. We will see Dr. Merchant tomorrow and get the results. Praying the headaches she's complained of lately will just be sinus issues. She is doing better with a CPAP machine and oxygen at night, but we are going to get settled in with new doctors for this in Texas this month....which by the way...I can't believe it is already February. 
Where has the time gone? Man, I love this kid! 


Wednesday, December 18, 2013

G.I.F.T Day....

Today is the day...
This is the day my baby at 7 months old took a horrible fall from a grocery cart, and God revealed her horrible secret. CANCER! 

My buddy, Ethan (this is him trying on Britt's glasses...she's blind), had his 14th birthday yesterday while I was at St. Jude with Ivee doctors trying to come up with solutions to save her from another surgery. So many times we as a family have had to put normal celebrations on the back burner to help Ivee live, or get better. Ethan knows we will celebrate he and dad's special days when we get to Houston this weekend, but I'm sure he was still bummed. That is, until he got home 
and discovered his broke, older sister (who got THIS shirt from her be
sty!) had scrapped some money together and bought him a small cake, a donut, and popsicles. She barely was able to shove 14 candles on that tiny cake and quickly sang to him so he could blow out the candles. That's when I knew that we have done something right in the middle of all our struggles and my absence in the last seven years. It's hard enough to meet all your kids needs when your home life is "normal", but it is a true struggle when you have a child with constant medical problems, hospitalizations and constant traveling. But when I see my kids, my marriage, and this journey, I am reminded of what I learned seven years ago...G.I.F.T...God is Faithful and True. 

This girl and I got home last night from our whirlwind trip to Memphis. 
Medically
The pulmonologist spoke to her partner/boss and he said Ivee would benefit from a CPAP machine. So  tomorrow that will be delivered along with a suction machine, to help me get the secretions out of her throat in the morning or when she's sick. The oxygen will go through the face piece of the CPAP machine. We will have to return to Memphis in three weeks to see if it's helping. *sigh
I am grateful I have to make the trip, however. I feel like I should sing that song ..."I would walk 500 hundred miles, and I would walk 500 more".... Luckily, I get to drive. 
My prayer is that all this machinery and treatments will get Ivee to a healthy state of not needing a tracheostomy by a long shot. The concern with a child whose been what she's been through, especially the brain surgeries and double radiation is nacrosis (death of brain tissue and vascular breakdown). If Ivee's lungs don't work well, the oxygen doesn't get to her brain. Not enough oxygen leads to nacrosis, and she's already at risk. 
She's had a few headaches this past month and scans are not until February. I'm not concerned about any tumor being present, but I will be a little anxious to see how the contrast dye looks showing the health of the brain and tissues. 

And let me say how incredibly thankful I am for friends and family who go with me the 14 hour drive (round trip) to these appointments. If They didn't, I would have been alone when I've received some very bad news at times. And this time, my friend, Cathy, had to be a mule. I still can't lift really heavy things, and Ivee's medical suitcase is heavy. Cathy had to load and unload the car, and get Ivee in and out. She has made the trip many times, even short notice. I think she's been as much as my dad, who helps me out often..


Ivee's face sums it up. Life is hectic here trying to prepare for a Christmas trip to Emmett, praying the mechanic finishes fixing my car tomorrow, packing up all we need to take, finding a home in Houston while I'm there, coming home to pack up the house, and then finding the cheapest and easiest way to get it all to Houston, while getting Brittney through her graduation finals, finding Ethan a new school, and finding a whole new network of doctors to take care of all of Ivee's issues. (We will continue her cancer protocols at St. Jude. That will not change, 

It's ...craycray! That's all I can say. BUT...I know where my strength comes from. It comes from The Lord....and it comes from you all! Your encouragement is tremendous. I think you have no idea what your prayers have done for this family, what those little words you post mean to us. I don't know if you know this, but I don't tell people I'm praying  for them, if I'm not. I feel like a liar if I say that, and don't follow through. So, if I say I am praying for you, I am! I believe all of you are the same! I've seen the evidence of it in my life. Thank you friends! 

Monday, December 09, 2013

Answers?...?

I have put off writing this blog, and I have written it and saved it, and returned to see what else I need to say. Now, I'll just leave it alone and publish the thing! 
 First a picture of my heart! 

The first reason I've struggled with writing anything is that after we got back from Memphis, I had to prepare for surgery. I had a hysterectomy the Tuesday before Thanksgiving, and I had no idea how exhausting it would be to recover. Emmett had to leave the Sunday after to go back to Texas and I have been relying on my children and family to help me. Ivee also became sick that week, so she missed school. 

The second reason I put it off is there was just so much I wanted to scream out and I really needed time and a filter. I won't go back and relive all that my mind has been wondering, but here is where we stand right now. 

We'll begin with the priority, which is most of the time, Ivee's health. Many if you know that since her tumor relapse in 2011, Ivee's health has declined. The continued damage from surgery and radiation has played havoc with her sinuses, vocal chord paralysis and lungs. Mind you, this is all related to brain damage. This was why the sleep study was so important, especially after we discovered that she aspirated her secretions. 

The sleep study reveals that she does obstruct her airway multiple times in an hour, roughly every 3.75 minutes. Her O2 while awake stayed in the 90s, but once she was asleep it stayed in the upper 80s. Unfortunately, quite a few times it dipped below 80 and even once went down to 58. (I am not convinced that the sensures always work correctly) but I do believe the 80s is correct. In the morning, they drew a blood sample to check the carbon dioxide in her blood stream, and it was in a quite uncomfortable range. 

Due to the results of the test, we began Ivee on a regimen to have breathing treatments, two different kinds, and a cough assist treatment every morning and night to try to get her secretions out, and do this multiple times a day when she is sick. We also put her on oxygen at night while she is sleeping. After a Pulsoc Symetry Study at home, we found that she stays in the 90s 55% of the time and did not drop below 80. Though this is an improvement, this is not solving her problems. 

This is what leads us to our tough decision and heartache. The ENT and pulmonologist have meet together to discuss the options, and they feel Ivee needs a tracheostomy. 

I am mad, hurt, and desperate to not put my daughter through one more hellish surgery and have one more foreign object put in her body. To have more set backs when she has come so far!? I've cried, gotten angry, and have calmed down. I didn't want to get on Skype and tell my poor husband one more bit of bad news that has seem to come in a never ending stream since he left for TX. But, we talked, we've come to an agreement and we are pressing forward as we always have to do. 

The plan, as of today-  Ivee and I will go to St. Jude Monday/Tuesday to meet with her pulmonologist and oncologist. We will get information about doctors at Texas Children's Hospital and I will leave with the appropriate medical files I need to get a second opinion. If for no other reason, this is the reason why we have been moved to Houston. Ivee will have a team of doctors in closer proximity to her that can help us with her lungs, throat, GI, orthopedics and therapies. We will find what she needs and we will get through this obstacle as we have always done for the last 7 years. And...we know God has this! 

Our goal is to get to TX as soon as I can. Britt graduates early on Januray 10th, barring that she past all her final exams. Emmett hopes to have enough money saved to get us in a rental property. We pray the house sells by the end of December/January, or we are able to get it rented/lease purchased. 
In the meantime, while I am recovering well from surgery, I still cannot lift anything heavy, but will be trying to pack all that I can in the house. If I don't need it or really want it, I guess I need to have a moving sale. 

We have our seasons here. Sometimes we are on the mountain top, and sometimes we are struggling to stay afloat in the stormy lake at the bottom of the valley. Through it all, I've learned to trust in Jesus. I have decided to not send Ivee back to school. I sent her yesterday, before I received the news, and she came home feeling puny and has declined since then. I will be homeschooling her during this transition, until we get her help physically. So, that maybe for a long time, but I'm in this to the finish. How could I not be?! 
I've got this cutie counting on me. 

Say a prayer, or a thousand, for us. I know so many of you have never stopped praying for my family and my sweet girl. The Lord has been good to us, and in my human and feeble mind, I am so easy to forget how far we've come in these long 7 years. 

"When leave like a river, attendeth my way
When sorrows like sea billows roll
Whatever my lot, Thou has taught me to say
It is well, it is well with my soul."
-Horatio Spafford-

Wednesday, November 20, 2013

Sleep study

Two words: Hated It! 

She did, and who can blame her! Look at all these wires! 

And it took over an hour to get it all done, then we moved her, then we had to fix leads that weren't working. She only managed to disconnect the probes in her left leg while asleep. I think we are going to get much needed answers from all if this, hopefully by tomorrow. 

Tuesday, November 19, 2013

Our night in Memphis

Today has been a long, full day of appointments here in Memphis. 
We began our day with Pulmonology, where Ivee's congestion has been consistent, we confirmed her O2 saturation just doesn't want to stay in the 90s. The doctor added chest film, upper GI films, and an echocardiogram. In eye clinic we found her vision has not gotten any worse, really. New glasses are needed, but looks like eye surgery is not even a thought now. 
The chest X-ray must have been clear, but I'll find out for certain tomorrow. He upper GI showed no reflux, same as the one she had two years ago. Don't know how the echo looked, no results yet. Hoping to find out all those results tomorrow. ENT doc and pulmonologist are in some agreement about our next steps with Ivee. A determination will be made after she completes her sleep study tonight. 

And that's where we are currently, in a room in he sleep clinic at Le Bonheur Children's. We will see what is I store for Ivee after this. It is a lot to discuss and take in, and I don't really want to go into detail until I have Strong facts. 
So, I will sleep in the room next to my girl tonight, praying that she sleeps as she normally does, and we get a clear understanding of her sleep patterns, and her oxygen saturation. 

We will return home tomorrow after we drop by the Jude to see the nurse practioner. 

Thursday I have a pre-op appointment for my surgery next Tuesday. Emmett is currently in Texas and will be home this weekend. The St. Jude Give Thanks walk is Saturday, and I have to prepare the house for the realtor to hold a open house showing on Sunday. 

Pause.....just breathe! 

Thank you, friends, for checking in on us. I'm not going to proof this post, so sorry for any mistakes. Have a great night!