Hospital Pictures

No, we are not back in hospital! Just wanted to share some pictures from our last stay. Noah is doing well and we have made it through a week at home! Thought it was time I posted about how things have been going here. We had started working up on his feeds in hospital, and he left hospital with his GJ feed of Tolerex running at 17cc/hr with supplemental full TPN. We are now at 30cc/hr of Tolerex so we should soon be able to stop his basics and just run lipids over 10hrs at night as well as D5W through the Infusemate at 5cc/hr during the day to keep his central line open. We are unable to lock his line at all, due to his high risk of clotting. This is where we were at before Noah went into hospital in January, so it feels really good to be back here again! His new central line is working wonderfully and we've had no issues at all. He is also completely weaned off the Phenobarb, finally!

Noah's stoma is healing very nicely too and no more leaking which is SO wonderful!! It must be so much more comfortable for him to not have constant stomach acid leaking and burning his skin. Because the stoma is healing, we are unable to have our second tube for drainage, so we have to live with an NG tube (a tube inserted in his nose down to his stomach) to vent and drain his tummy. It's not pleasant for anyone, but it should only be for a few weeks and then our surgeon can insert a GJ tube that has a port to the stomach for venting and a port to his jejunum for feeding. Noah seems to be quite used to it now and has stopped trying to pull at it constantly.

Kailyn turned 8 on Tuesday, so her and I got to enjoy a mother/daughter night out. We went out for dinner and then to the spring tea at girls club. Can't believe I have an 8 year old already! Other than that, it's been a quiet week here and we haven't ventured out of the house much with Noah in tow yet. We are just enjoying being at home as a family, and it's always a bit of an adjustment period for everyone when we first get home. Noah is a busy, typical two year old these days. He is into everything and his favorite pastime lately is to empty out the cupboards. It's still hard to believe that he was so very sick when you see him now! His full recovery is truly miraculous!

~HAPPY EASTER~

In Christ alone, my hope is found

He is my light, my strength, my song

this cornerstone, this solid ground

firm through the fiercest drought and storm.

What heights of love, what depths of peace

when fears are stilled, when strivings cease.

My comforter, my all in all

here in the love of Christ I stand.

In Christ alone, who took on flesh,

fullness of God in helpless Babe!

This gift of love and righteousness,

scorned by the ones He came to save.

'Til on that cross as Jesus died,

the wrath of God was satisfied.

For ev’ry sin on Him was laid

here in the death of Christ I live.

There in the ground His body lay,

Light of the world by darkness slain

then, bursting forth in glorious day

up from the grave He rose again!

And as He stands in victory

sin’s curse has lost its grip on me;

for I am His and He is mine

bought with the precious blood of Christ.

No guilt in life, no fear in death

this is the pow’r of Christ in me

from life’s first cry to final breath

Jesus commands my destiny.

No pow’r of hell, no scheme of man,

can ever pluck me from His hand

til He returns or calls me home,

here in the pow’r of Christ I’ll stand!

In Christ Alone - Newsboys

Good Friday

When everything is wrong

The day has passed and nothing's done

And the whole world seems against me

When I'm rolling in my bed, there's a storm in my head

I'm afraid of sinking in despair.

Teach me, Lord to have faith

In what you're bringing me will

Change my life and bring you glory and...

There on the storm I am learning to let go

Of the will that I so long to control

There may I be in your arms eternally

I thank you, Lord, You are the calmer of the storm.

You rebuke the wind and the waves

Once again I find I'm amazed

At the power of your will

Cuz I'm a child of little faith

I feel the wind and forget your grace

And you say, "Peace, be still."...

There on the storm,

Teach me God to understand

Of the Will that I just cannot control

There may I see all you love protecting me

I thank you Lord, You are the calmer of the storm.

Down Here ~ Calmer Of The Storm

Home

After 51 days in hospital, Noah finally came home yesterday! There were a few times during this stay that I thought we'd never see the day. We are just so very thankful to finally be home and together again as a family. As this is a public blog and not private, and I'd like to keep it that way, I feel unable to share all the events of the past week. But trust has been broken between us as a family and the medical staff, and unfortunately, I feel that we are no longer part of the team in Noah's care. It will be very difficult to regain that and I can't even begin to imagine how to do that. The worst part is that we know this will not be our last hospital stay, but it will be very hard to go back when Noah gets sick again. A huge thank you to the staff on CH5 who have been our support through a very rough time. Please pray for a good long break this time. We need it now more than ever.

The Hits Just Keep On Coming

Noah got back on the ward on Thursday and was doing very well. Then Friday came along and things fell apart... somehow, someway, Noah's brand new central line came out. No one knows quite what happened...I discovered it, but it had been well secured and hidden away from little hands so I really can't see how he could have pulled it out. It was very frustrating and I just felt sick about it. But whats done is done. 

So that meant it was back to the OR yesterday for ANOTHER new line. This one was very difficult to put in and our surgeon thinks it's because Noah likely has another clot in his subclavian. He will need to have another ultrasound to confirm this. Noah spent yesterday night in PICU and is now back on the ward. Once again,  thankfully, he looks no worse for wear. Poor little guy has to go through so much... it's just not fair and he just can't seem to catch a break these days. He now has to have someone watching him day AND all night until that line has a chance to heal and become more secure. He has no more spots to put lines in right now, so it is absolutely critical that he keeps this line. He has a sitter to stay awake in his room all night to watch his line so I feel like I've kind of been booted out and I am at home for the night. Not sure how long we will have to watch him this diligently as we certainly can't stay awake all night once Noah is home!

Good news... the nurses are not striking!

Noah's Timing

Seems that Noah already had it all figured out and just wanted to remind everyone around here that he calls the shots! Around noon today, Noah's jugular central line came out. I'm not exactly sure what happened, whether he pulled it or not, but suddenly, there it was...on the floor! So our surgeon was called and Noah was put on the emergency OR slate for today. He went to the OR around 5:30pm and just after 9pm had a new central line, stoma revision and a skin biopsy done. He is now in PICU to be monitored more closely overnight, but everything went really well. He is extubated and he has his morphine infusion back, so he's a sleepy little guy. He's in the same room he was in a couple of weeks ago, and it really brings back the reality of everything he went through. I wasn't quite ready for all this today, but I can breathe a sigh of relief now that it's all over and we are one big step closer to going home!

Doing Well!

This post is long overdue, however, it is more difficult to get on the internet now that we are back on the ward again. Noah continues to do well and look even better each day! He is completely off the morphine now. We have switched his Lorazepam to Phenobarb. This drug is usually used to treat seizures, however, it has the same effects on the body as Lorazepam but is supposed to be easier to wean off. Since we weren't having any luck with the Lorazepam weaning, we thought we'd give this a try. However, so far, Noah is proving to be a very difficult one to wean off the Phenobarb as well. Fluids are still an issue as well as hypercalcemia, which no one has any explanation for. He is still dependent on the Lasix to help his kidneys work. The hope is that with more time, all these things will settle out on their own.

Noah also has a surgery date for Tuesday, March 11th for a new central line and his g-tube stoma repair. We were hoping it would happen this week, however, anesthesia feels that Noah would do better if we wait a few days more before having to intubate him again for surgery. However, there is talk of a nursing strike here and the strike vote is set for March 10th. This means that as early as March 11th, nurses could be on strike. Praying that doesn't happen as it could put us in a real bind here!!