Posts

Showing posts from January, 2020

Restoration

Image
Good evening    everyone. Wow it has been almost 5 days since my mom last wrote anything. I thought it only fitting that I, Mac,    give you all the update.  Hi there! So this morning I took a little nap before my appointment, while also trying to avoid my siblings. Well you see my sister her eyes are all goopy, while my big brother has a cough and his ears hurt. My mommy used a special tool  🔭 , a tad bit smaller and her  🩺 . Well I mean she is a doctor so she made sure they feel better. I am praying that they keep their distances, because I finally have some white blood cells and I need them to count. What’s been going on/  ✅ lab work today   *I didn’t need to get any transfusions!  🥳 ✅ got my second Synagis injection (protect from RSV) ✅ bandage over my semi-permanent line was changed today     *I do not like that at all. All that stickiness is hard to get off, and to help they use a spray that is cold  🥶 ✅ almost completed my weaning off of pain med

Home sweet home

Image
Good evening everyone. It has been a full 24 hours since Mac and I have been home. Truth be told, we had an absolute amazing and safe first night.  My mother has spent the previous night with us, as Elvin who has been having a runny nose stayed back with our eldest.      *its ironic as I say ‘eldest’ as one day they truly will be So as we geared up to pack up all of our items from our humble abode, I had warned, that any longer in our current state, we would purchase a welcome mat and possibly bring a ring doorbell from home (so we could at least be warned at whom ever entered)  🤗 So laundry was being done and bags being packed. Now you may think what in the world could you possibly have brought in. I mean when you know you’re going to be in a hospital for some time you try to bring things that remind you of home. Like blankets, or a picture of Mac with his siblings. My mother went in search of a dolly to load everything (2 trips this woman had to make). ‘ Your going

Persistent prayer

Image
Good morning It has been a few days since my last posts. During that time I was a bit frustrated with all the changes that was going on. It was as if someone had tied my arms behind my back and pushed me into the water, and yelled ‘SWIM’! The reality is often times when the Lord has placed you in a season in which you will struggle through a trial of sorts, well He is asking you to trust Him. You see Emerson’s life was chosen before I even knew him. I often think if I do something enough times it will work in my favor.  My husband knows this all too well, when it comes to doing things in around the house. I often hound him so much that eventually he completes that task. Beauty in all of this is that since I’ve been here in hospital, my husband has picked up the reigns and does things without me having to ask. As always I will be honest.  2 years ago my method would have been in the form of nagging Now, my method is as follows: bring it to the foot of the cross. Allowing Ch

Frustrated mama

Good morning. As I sit next to Emerson as he wrestles to get back to sleep, I yearn for calmness to pour over him. Yesterday was a bit overwhelming and honestly frustrating. I mean I’ve been doing fine as far as being held up at this luxury hospital 🙄. Don’t get me wrong the service has been wonderful. Well it’s just that things weren’t going to plan for Emerson.  You see each day the medical team, along with their attending (head doctor in charge of your care during your admission), gathers around and talks about what has happened, what they desire to happen and all the diagnostic results (labs, imaging) that has led them to the conclusion. As you all know Mac doesn’t follow the rules. His white blood cell count was still not rising as expected and his electrolytes were whack, top that off with the fact that he started to refuse his bottle 😩. At this point I’m just feeling like we take a few steps forward to go right back to where we were. On top of that with the transition of

Need to breath

Image
When we make plans, God laughs. Well I try to explain that to Emerson’s oncologist, Dr. V. Every time that he happens to be on service and creates a plan it doesn’t quite fall to plan.  Today was going to be busy:  ✅ Switching from morphine to methadone (starting at noon)      *soon after Emerson was fussy and irritable. An additional medication that was supposed to relieve him, increased his respiration’s and heart rate.    *put on high flow oxygen (after they suctioned him with a long skinny tube) ✅ Going to continue with fluids right now and replacing the electrolytes, but overnight will stop fluids and restart the nutritional stuff just for 10 hours (will adjust the electrolytes there)     *fluids have been stopped chest x-ray ordered: concern his lungs are a bit wet, so to speak      * ✅ Giving GCSF Granulocyte-colony stimulating factor; also known as colony-stimulating factor 3 (CSF 3), is a glycoprotein that stimulates the bone marrow to produc

P.C.: Prayer and Care

Thank you for baby Emerson that you can take his cancer out and he can get well so we can play with him. (From the mouth of  ATH my nephew) . This was his prayer thus evening prior to going to bed. Now what exactly is a prayer? It is defined as follows:  *a solemn request for help or expression of thanks addressed to God or an object of worship.   Now we can all be honest about how we pray. Often times there is selfish intent and our desire is to fulfill something for ourselves. Thing is God already knows the ‘desires’ of your heart. However if you see out His word "Take delight in the Lord, and he will give you the desires of your heart." Psalm‬ ‭37:4‬   It’s not as easy as just wishing something and hoping it will come true. God is not a genie in a lamp (like Aladdin  🧞‍♂️ ) One must first seek out the Lord, in doing so you may come to find out that your heart desires are not aligned with what He desires for you. If that is the case you will find yours

God’s plan: he is full of mercy

Image
First thing first I am so thankful that God has breathed life into Emerson’s lungs.    Many of you may have received my message about two young children who are both on hospice.      *this is a healthcare of a terminally ill patient   One is a 7 month old child, admitted to the same unit Mac is on. As you know, Emerson is 7 months old. Over in Texas a young boy A., grandson of a wonderful woman of God at my church, Ms. E. He is older, middle/junior high age. He was diagnosed with cancer sometime ago, and had been doing well, but this past week had some setbacks.    As I sit and look upon my child sleeping peacefully, my heart breaks and aches for their families. No mother desires for any illness or pain to befall their child, and when it appears that there is no medical intervention that could bring solutions its Devastating. As a mother you want to do everything for your child, and it almost feels like your hands have been tied behind your back.  You may be thinking, as

Emotions

   Good afternoon. Today I would love to give you an insight to me and my immediate families emotional state. I am more than sure, that as you read this you may be able to connect to one or possibly more of our standpoints.   I will begin with Emerson. Since his birth he has been just so peaceful and happy. I mean he would smile at just about anything. But since his second round of chemo I can say that he is not a happy camper. Cool as a cucumber. Now obviously he is in a state of pain/discomfort, so often he is not so happy. Similar to me he wears his feelings in his eyebrows! As of late there is a lot of frowning. But today, he smiled, the sweetest smile. As if to tell me ‘all of this is not for nothing mom, God is working on me.’ Max our c’est la vie.    Emelia, or as we like to call her Mia/Mimi/Mama Mia. I think she is our back bone. I mean ironically because she is my ‘I say no and stop to everything.’ She has been the one to hold course the most. She continues to be ind

More testing...few hiccups

Image
Tonight will most likely be a series of short post We awoke this morning, by the grace of God ready to tackle on new challenges. We have been drinking mama’s milk from a bottle. Hallelujah! A lot more spitting up, but I was prepared for that, as we are not utilizing his belly’s button (g-tube). We are currently working on outfit #3, that’s okay because I’m so excited that Mac is taking the bottle 🤥 and still desires more despite vomiting. We had physical therapy today, which Emerson is not a big fan of, but he does everything they ask, and they are truly amazed. There had been a consult for speech therapy, prior to him taking a bottle or nursing from me, but that is no longer needed. Currently this is what  we have been dealing with the following: ✅still not producing needed number of cells to mount an immune response ✅bradycardia Normal: 100-190 (awake) or 90-160 (asleep) *Mac has dipped all the way into the 80s, and goes as high as upper 90s *Previously he was in the one-

Miracles: God is still @ work

Image
Good evening everyone. Today was SO much better, that my mommy is letting me write. Now I had to write down my thoughts before I fell asleep from the pain medication they gave me.  I know last night my mommy wrote about how I was in pain. She was not lying. You see I’ve been getting fed through this special button in my belly. Basically my milk skips my mouth and the thing called esophagus and straight to my belly it goes. Thing is, I haven’t really used my stomach in a while so it has not been cooperating. I am not vomiting as much, although I got big blobs of yucky stuff in my throat the my mom sucks out with thus blue duhickie (I hate it, it makes so much noise)! Well it seems every time they feed me I end up vomiting if I don’t get ‘vented’ (basically emptying my stomach juices). Everyday these doctor folk come in and fuss about  -how much did he eat -make sure you doing the feeds -don’t vent too much Thing is my mommy is also one of those doctor folk and well, she is

Pain pain go away...

Image
Short post here everyone. So last night went as well as we could hope. Feeding every 2 hours off for 2. Not much vomit episodes, and the stuff we let drain was improving. However since this morning Emerson has been crying, more like yelling. Despite pain medications, sedatives and anti-sedative etc. this    poor guy is wailing. I mean real tears.  At this point I have stopped his feeds and I’m emptying his stomachs every few hours, called venting. Basically I place the tube I feed him with or a wider one and just let gravity work.  Do not drink:this is what I get from ‘venting Mac I’m trying my best not to just SCREAM! I told Emerson that I am not happy that  Bad cells of cancer ➡️ led to us having to start chemo  ➡️ side effects of chemo=why we have been stuck in the hospital. The way that he has cried it would appear that someone had physically hurt him.  We are not going into the next day and he is asleep, currently. I am unsure how long this will last. He

Grateful-Plea

Image
Shout out! To all my wonderful nurses on the 4th floor of Ochsner pediatric unit. I mean honestly each and everyone of them have gone above and beyond their call of duties when it comes to being the nurse in charge of Emerson. I would have to admit that I am a bit more bias for the nurses, and thus is coming from a doctor 🙂 . I mean honestly since our first admission the medical staff has been wonderful: Dr. V (oncologist and his team Dr.F and Dr. L) along with all the resident and student doctors.  Child life: Ms. K, AE and their crew are just an absolute delight and are willing to even go do your laundry  Yet the nursing staff, is very unique, and they go above and beyond taking care of you while you are here. My mom stayed the night with me Wednesday, and nurse C. handled baby Mac so amazingly. As many of you know I was in need of some sleep and was gifted a room at the hotel that is literally connected to the hospital. So while I rested, my mother spent the night with Ma

Step back (part 2): need rest

Image
Good evening everyone. Praying that you all have had a good day @ work, school, or home. It’s a beautiful cold day. Although I haven’t been outside I can tell it’s colder as our room feels colder in our room.  Which with the news I’m going to share is just fine: Emerson has been running fevers, and remember when that happens he is on 🔥 . So a cool room helps, even if it means I look like I’m living in Alaska. Changes for today ✅ discontinued the nausea medication, zofran (ondansetron)     *as it has been shown to affect liver numbers   *started on medication called Reglan (metoclopramide) for nausea ✅  discontinued the TPN  *#1 side effect is elevated liver enzymes ✅ rundown of the actual numbers  ALT: 426–643–921–1350–*1521  AST:191–350–431–574–507 (down) Alkaline phosphates seems:362–459–430–332–268 (down) Total bilirubin: 1.1–1.5–1.6–1.2–2.3(up)     *as I’m with Mac all day I think I can see some yellowing of the white of his eyes (I will ge