Friday, August 20, 2010

Up and Down

We have officially entered the rollercoaster part of the recovery. Joshua has done so well for so long, and we have finally hit a stumbling block.

Shane and I ran to the grocery store and to get some dinner tonight and while we were gone, Joshua's heart rate, Oxygen saturation, and blood pressure crashed. Thankfully the doctor and nurses acted quickly and upped a few of his drugs. They also got started another blood transfusion along with more fluids to help him recover. They are going to start lasix soon to help him pee off some of the extra fluid that he has started to retain.

Our nurse tonight is wonderful. In the few short minutes that we have been back, she has calmed me down, written out a list of all the drugs that Joshua is on and what they are for, she has been at his side every minute. She has encouraged me to journal, keep record of all procedures, and to take care of myself. She flat out told us that I should not even think about feeling guilty for not staying at his bedside tonight- the best thing I can do is continue to pump, sleep, and eat and drink well. I know that, but it's good to hear it from someone else (other than my husband of course.)

I will admit. I'm a bit of a wreck tonight. My heart aches. I miss hearing my baby growl and cry and screech. I want to hold him and snuggle him. I want to do more than just pray and hope and pump. I want to be home with my other children, in my bed, with my stuff. I don't want to live in "hospital land" where time goes slowly, yet too quickly, and the beeps and buzzing and hissing becomes almost comforting.

It's been a long exhausting day of good moments and bad moments. I'm trying to remember how well he's done, and just remember that Joshua is going to have these up and down moments. We are still in the most critical time after the surgery and the fact that we have gone this long without any major problems is a miracle in itself. I know that God has Joshua's life in his hands. I've fully committed his life to Him.

Please continue to pray for our sweet boy. Continue to pray for strength, peace, and rest for both Shane and myself. Continue to pray for Caleb and Hannah as they are staying with their grandparents away from home. Pray for the doctors, nurses, respiratory therapists, and everyone else that comes into contact with Joshua tonight. And most imporantly continue to pray that God's will be done.

Thank you friends. I'll update again in the morning.


Jennifer said...

The road to recovery is a like a Sunday drive in the country. It takes awhile, takes time away from "normal" life, has lots of twist and turns, ups and downs, but makes you appreciate the beauty life has to offer.

The road might have some road blocks but joshua's strenght will overcome those.

Praying for a quick speedy recovery.

And yes, take care of yourself. You will need to be rested to care for Joshua!

Heart Hugs
Jennifer- mommy to Colin 16 months HLHS

Jen said...

Hospital life is so difficult. I feel your pain, as we so have been there! It is definitely a roller coaster ride, lots of ups and downs. Try to stay strong, even though it is so hard to watch them. He WILL get better! It just takes time.
Soon this will all be a distant memory (someone once told me that when I was in your shoes and somehow it made me feel better!) :P

Take care,
Jen- mommy to Andrew, TOF

Carrie Flynn said...

Our favorite PICU doc was from England and told us to expect a "swoon" about 24 - 48 hours post op. We always appreciated that way of describing it. So glad to hear you feel great about your nurses. It makes all the difference in a mom's sanity. (what little there is during a time like this). Joshua and all of you are in our prayers.
Carrie Flynn
(mom to Tiernan-coarctation, complete AV canal, hypoplastic aorta and mildly hypoplastic LV-1 yr old as of yesterday. )

PamO said...

Oh, my heart is aching for you! I know how hard it is to sit beside the bed and feel helpless. Do take care of yourself for Joshua's sake and do keep leaning on the Everlasting arms of The Great Physician. He is holding Joshua in His hands. He has gifted the medical professionals to do what they do. He is in control.
Praying, praying, praying... and waiting for the next update...
Heart hugs,

Hope's Blog said...

I was so hoping you would not have to hop on the roller coaster and that Joshua would fly through recovery without any little glitches. I know that is rare, but I was hoping. Take care of yourself and your husband...the stress alone is hard enough on your physical and mental state.

You all remain in my thoughts and prayers.

Carolina Carters said...

No matter how much you try to prepare yourself for the "downs" of this ride, there's no way to protect yourself from the way they slap you in the face and take your breath away. We're praying so hard for Joshua, his team, and his strong mommy and daddy.

Do take care of yourself Jill! I know it's difficult to sit a lot (at least super comfortably) and rest like "normal" postpartum women, but try! That was one mistake I made...I was so swollen it was ridiculous until we finally got home and I rested a little. Joshua needs you to be strong for him, so don't forget about you!

Lots of prayers for an uneventful night and a much more positive day tomorrow.

Big heart hugs and prayers!!!!

Amy Bennett said...

Oh, I so understand what you're going through. The life of a single ventricle kid is definitely a bumpy one and it's so hard as a parent to just sit by and trust God, but that's what He calls us to do when He gives us such special that's what we do. Having spent so much of Bodie's life in the hospital, I understand the "hospital life" all too well. But have faith - soon it will be a distant memory.:-) Hang in there!!!

Anonymous said...

As long as there are more good days than bad days Joshua is on the right track. Stay strong, and get as much rest as possible. You guys are doing so well handling everything. We will continue praying for the whole family, especially Joshua's strength.

Mike O.

Stefenie said...

The PICU shuffle is so tough. Two steps forward, three steps back. I feel for you and I have been there too many times myself with Logan. It is definitely a let down but you just have to remind yourself that it will get better. Hold onto that thought and don't let it go.

I love the pictures of you guys holding Joshua. Remind yourself of that precious moment and know that soon you will get to hold him in your arms again. Things will settle down and you will once again get to enjoy your sweet baby.

Your nurse is right. Right now you do need your rest. I know it is hard to leave him but sleep is the most important thing that you can do for Joshua. He needs you to be fully rested so you can be there for him.


Amy said...

I again find myself comforted by the comments from other heart Mommies. Not having been where you are, all I can do is offer up prayers. Lots and lots of prayers. No advice. No experiences. Joshua was on my mind every single time I woke up in the night last night (and at 8-months pregnant, you know how often that was LOL). And the first thing I did when I crawled out of bed this morning was hop online to check on you guys. You're doing fanastic with the updates, Jill. You have many, many, many people praying for you!!
Love & hugs to you & your family <3

Anonymous said...

Praying for Joshua's healing and your comfort. I watched my daughter go through this when Ivan was born and had his surgery. Although we know there is a long road to healing, in our small minds, when the surgery is over and they are doing so well, we feel like the worst part is over. Then starts the ups and downs. God is taking care of Joshua you take care of you. Praying for your entire family.
Gale Bagwell, Grandma to Ivan Taylor HLHS, CoArc

Anonymous said...

Praying for strength and comfort! And knowing that your kids will be okay being away with grandparents. My older two spent a lot of time away (five months total within the first year) and they still talk about the fun stuff they did and the special grandparent time, not the drama the way we remember it. Hang in there and stay strong. It does slowly get easier.


Anonymous said...

Jill this is all part of the CVICU Shuffle I was talking about. It truly is a roller coaster ride...his surgery was that long and scary trek upwards and now you are in the free fall of that first nosedive off the top. PLEASE PLEASE PLEASE understand that what he is going through is all normal. For the first 3 days of his life his heart had to work one way. Now all of a sudden, due to modern technology and God, his heart is having to work another way. You will experience this after the next 2 surgical dates as well. I know this sounds so simple but "If God brought you too it, He will bring you through it" I truly believe in my heart that Joshua is experiencing the shuffle because he has to get used to the new way his heart is working to substain his body.

As others have pointed out - and again I know this sounds so simple - but if you are not at 100% with rest and nourishment, Joshua is going to feel that. He needs you to be strong for him. To fight for him. To be his advocate. I know all to well "hospital time" I lived it for over 2 months when my daughter was born. You forget what day it is. You walk out of the hospital and it is night time when you thought it was the middle of the afternoon.

If I only knew then what I know now after this road I have been on. Foolishly I thought "if we can just get through the first surgery" we will be good to go. Your fight starts after the surgery. I debated about typing that. I really did. But I don't want to sugarcoat it. If you need to vent, please email me at I know what it is like just needing to scream and get it off your chest.

Shannon Egan
cp: McKenzieLayneEgan

Anonymous said...

Wanted to share this scripture with you. Hope it is okay and may bring some comfort to you and your husband and to Joshua. Really all of your family.

"But those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not faint." -Isaiah 40:31

Praying for all of you. Rainy

Christine said...

*hug thinking of you and praying for you! Take care of yourself please!!

HennHouse said...

Praying here, too.

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