The Nasal Gastric Tube

I believe we hit a wall with AaronMatthew's Nasal Gastric tube.

The NG tube is the thing that is taped to his face. We were taught how to insert it. It goes in his nostril and down his throat into his belly.

As you can see, AaronMatthew's face is really red and irritated.
He has been pulling out his tube pretty regularly. When he does that, he will rip the tape off in the process along with a layer of skin. The tape will also start to peel off, as seen in the photos and I will need to replace it.

I tried a couple different adhesive removers like detachol and a adhesive remover pad from Medline. I find that those are harsh on his skin too and the best remover has been some organic coconut oil.

Also, we have tried many different kinds of tape. I have found that anything made from Covidien is not really sticky and is a complete waste of money. 3M adhesives work really well. We like Tegaderm. The unfortunate thing is when AaronMatthew takes it off himself.

We have tried taping his NG tube to his forehead. It looked funny, not to mention he pulled his tube out 3 times within 10 minutes.

We have had to wrap AaronMatthew snug in blankets when we feed him to restrain his hands.

The big bummer is that he has very poor muscle tone. Because of that, he has a poor suck and does not take a bottle well. We are working on that, but it is going to take a lot of time and patience.

We made an appointment to see a surgeon to put in a Gastric Tube at my request.
That would be permanent until removed. It will be surgically placed into his stomach.

Over the Hump

I took AaronMatthew to the cardiologist this morning.

We got the okay to discontinue a medicine that was used for his junctional heart rhythm. And we also got the okay to cut the diuretic dose in half. That is very promising as his heart that once had a huge hole in it and was causing him heart failure is now repaired and performing as a normal heart. Our next appointment is going to be spaced further out since we will need to see less and less of the cardiologist.

He is smiling a lot more these days. He even laughs at times. He is having a hard time sucking on a bottle. We will need to do some speech language and occupational therapy to help him along the way and to help to get him off the nasal gastric feeding tube.

He reaches for objects and grabs them.  He follows people with his eyes and turns his head. He cannot tolerate tummy time. When I flip him on his back from his tummy, he gasps and turns purple with shallow breathing. We will work on other things like strengthening  his core muscles before putting him back on his tummy.

The Revolving Door

I am so glad that hospitals are open all of the time! But I am not so glad that we have to use them a lot lately. We sure have had our use of them. I ask myself, "When are we not going to need them?"

If you think my life has been difficult from the previous posts, it just got turned up a notch!

In this post, I will tell you how the hospital has been a revolving door and our way of coping with it. This might be a longer post, but please stick with it and read all the way through it... I feel personally, that writing all of this down for all of you to read is a way for me to cope with what I have been, and are currently going through.

My husband and I moved to Detroit's Eastside over 2 years ago and have started a church. Since AaronMatthew has been born, we have held church services. We plan to start up again when the weather gets nice in our neighborhood park with BBQ's and a Bible study.

With that being said, it's only my husband and two boys that live in Detroit. We have had help from a couple of people that I have met and have become friend's with.

In mid December, I was having pain in my upper stomach. I grinned it and bared it for one night until 3 am rolling around in my bed in the fetal position. The next night, I had the same pain kick up around 7:30 pm after I ate a sandwich with mayo on it. My husband was concerned that I was having a gallbladder attack and that I might need emergency surgery. AaronMatthew was still in the hospital from his open-heart surgery.

I drove myself to the hospital and walked in hunched-back holding my upper stomach, moaning. I was checked in right away. And wouldn't you know, the pain went away right before the doctor came in! I told the doctor about my pain and he rolled up an ultrasound machine and saw two gallstones. He said, "Ma'am, you need surgery to get your gallbladder out." I said, "No! This is not happening right now I have a child in the ICU."

AaronMatthew wasn't doing well at that time and they were thinking about intubating him because of his breathing. Two surgeon's came to see me in the ER to discuss surgery. I told them I am not in pain and needed to hold off because of my baby. They warned me not to wait any longer than necessary because of complications that could arise. After that, I stuck to a very strict diet of no fat and nothing that contained any type or kind of oil. I don't recommend this as it is not healthy or good for your body or cellular structures. Desperate times call for desperate measures.

Over the course of that time, I scheduled surgery and I had to cancel it because it would have been two days after AaronMatthew was discharged from the hospital. AaronMatthew ended up with the flu about two weeks later and ended up in the hospital again for a week. And was discharged again.

I had surgery scheduled for the 12th of February. We were flying our middle daughter in to help us with the boys on the 10th. Well...

On the afternoon of January 30th I was looking forward to a long awaited nap, I was changing AaronMatthew and pulled his feet out of his outfit when I saw pale/purple feet. My husband told me to take him in the light and look at him. I did and saw purplish feet. He had been sounding like he was snoring while he was awake too. I got scared and drove him to the hospital. AaronMatthew's oxygen level was just fine. He was retracting a little harder than normal in his ribs (breathing hard), and the color in his feet had returned. He was monitored in the ER for a few hours and we were discharged.

That night, I could not sleep because... I was in pain. I tossed and turned all night in pain. I didn't think I had anything that would trigger a gallbladder attack, but I had been having dull pain for the past day and a half and it was just getting more intense as time went on. I was praying and almost in tears around 5 am. My husband rolled over in bed and I told him that I had been up all night in pain and couldn't sleep. We prayed together. He drove me to the hospital. We both knew they were going to keep me for surgery.

I was admitted into the hospital from the ER. My gallbladder was inflamed. My husband called Southwest Airlines and got our daughters' flight changed to the next morning. Then they cancelled her flight due to the weather. He rescheduled it, and it was cancelled again because of ice on the runways. During that time, AaronMatthew started throwing up. I was on the verge about checking myself out of the hospital to come home and watch our toddler while my husband would take AaronMatthew back to the hospital. There was a major snowstorm going on and a babysitter was not a good option at the time.

I didn't check myself out. I stayed. AaronMatthew was able to keep pedialyte down. Our daughter's flight was re-scheduled the day I had surgery. I awoke out of surgery super sick with vertigo and vomiting for 24 hours straight. As soon as I could get up and walk, I did. Whoozy and all. I walked circles around the nurses station and told them I had to go home to my husband, daughter and boys.

I came home and not even two days later... we were back in the ER with AaronMatthew. This time at the hospital he was born at. His doctor was back in town.

AaronMatthew still was sounding like he was snoring when he was awake. His respirations (breathing patterns) were fast and hard. He was breathing (we counted) 88 times a minute! He was hospitalized for four days in the ICU and was put on hi-flow oxygen, which I think helps him a lot. Unfortunately, we cannot take hi-flow home with us. We have a follow-up doctor's appointment today.

My weak moments when AaronMatthew is in the hospital are when he is getting poked with needles. For some reason, it is nearly impossible to get a needle in his vein. For that reason, there is much physical pain with my son and much emotional pain with me. I called my husband to cry on the phone with him, while they were trying to get a blood culture and IV started. He told me, "Could you imagine how God felt when He saw Jesus Christ on the cross?" I know that my child's pain is no where near as bad as what Jesus went through for all of mankind, but that does put things into perspective. My husband reminded me to have an eternal perspective and said that we are ministering to a multitude of people in the hospital from doctors to nurses to patients to family and friends of patients, to respiratory therapists, housekeepers, transportation specialists and the like. It helped to hear my husband have such a good attitude about this. We prayed and I got off the phone with him.  They were unsuccessful at getting a blood culture or an IV started.

My husband spent the nights in the hospital with AaronMatthew and most of the days as I was recovering from surgery and I began to feel fluish... again!

We were discharged again from the hospital.

I read this morning in the Bible a great word of encouragement in Romans Chapter 8. It's one of those times that when you read God's Word, (even though you may have read it a hundred times or so, it just really pops out at you and grabs your heart-- you read it and have tears). It says:

Who shall separate us from the love of Christ?

Shall tribulation, or distress, or persecution, or famine, or nakedness, or peril, or sword?

...

Yet in all these things we are more than conquerors through Him who loved us.

For I am persuaded that neither death nor life, 

nor angels nor principalities,

nor powers,

nor things present nor things to come,

nor height nor depth,

nor any other created thing,

shall be able to separate us from the love of God which is in Christ Jesus our Lord.

Romans 8:35&37-39

So not only all of this has gone on in our lives, but our oldest daughter has been in the ER three times due to a severe allergic reaction and my sister is having narrowing of her right artery in her heart and she was hospitalized the same time I was in our hometown and is going to need another open-heart surgery.

So how do we cope? Through our relationship with Jesus Christ. In Him we live, in Him we breathe, in Him we have our peace.

I cried really hard the other day and all I could say is, "Jesus help! Jesus heal my baby!"

No where in the Bible does it say that the Lord will give you more than you can handle. When the passage refers to God helping you with the load you are bearing to stand up under it, it is referring to temptation. The other passage that I am thinking of is that His yoke is easy and His burden is light. How I interpret that is: HE HANDLES IT FOR ME, BECAUSE I CANNOT! All of this is way beyond me.

If I didn't know or trust the Lord, I wouldn't have hope. I wouldn't have life. I wouldn't have peace.

And we know that all things work together for good to those who love God, 

to those who are the called according to His purpose.

Romans 8:28

...for I have learned in whatever state I am, to be content:

I know how to be abased, and I know how to abound.

Everywhere and in all things I have learned both to be full and to be hungry,

both to abound and to suffer need. 

I can do all things through Christ who strengthens me.

Philippians 4:11-13

Be anxious for nothing, but in everything by prayer and supplication, 

with thanksgiving,

let your requests be made know to God;

and the peace of God,

which surpasses all understanding, 

will guard your hearts and minds though Christ Jesus.

Philippians 4:6-7