Another good day with Jonah.
I spoke with doctors about leaving the hospital early next week, and they said they understand my concerns, and that the expectation is reasonable. Don't worry, unless something changes, I don't plan to break Jonah out without medical consent. I think we're all on the same page, knowing that I can care from him from home just as I have been in the hospital and knowing that he is much more susceptible to bad infection there (hospital) than here (home). We're going to have a conference with dermatology, neonatology and Jonah's potential pediatrician later this week to discuss. We will work over this next week to slowly lower his morphine dose, but I'm not sure how long it will take and whether or not they'll let us come home on it. I'm (along with lots of help) trying to get our ducks in a row concerning supply ordering, arranging for home health care etc. We've applied for all the disability income stuff and Cap-C. Thanks for all your suggestions and comments. There's an excellent social worker at the hospital helping us with all the details.
I'm very sleepy tonight, so I'm not going to post more now. I go to bed with my heart heavy for Stellan and praying that God will yet again perform a miracle in his life. Having lost Gabe already and having such a fragile life in Jonah, I know only too well how MckMama feels. My heart aches for her, and I just pray that both of our boys will be home very soon, where they belong - living full and long, long, long lives that glorify the Father who has saved them.
Monday, March 23, 2009
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44 comments:
So glad that Jonah has had a good day and that the end is in sight for him to be home, where he belongs. I always look forward to your updates. Love the pictures from yesterday. He is so stinkin CUTE!
I've been thinking of Stellan all day..praying for him and Jonah tonight! Hope you get some rest and are refreshed tomorrow!
I haven't posted in a couple days - but I'm still here and still praying. I do hope you get to go home very soon - you are right, you are better off (infection wise) being at home. I am glad that you are working through all the logistics (finances, bandages, home health care etc.). It will only help when you get outta the hospital!
Get some sleep tonight!
Janel
I just said to my husband, "I hope there is a Jonah update!" and whalla - there is an update! Glad that he had a good day! We are praying for both Jonah and Stellan. Praying that Jonah is able to go home next week! I pray that you will be given the strength and wisdom to get everything set and in place for his arrival in your home as you care for baby Jonah! I know that will be a sweet day for you both! Get some rest!
woo hoo! go social workers :)
sorry, just had to root for my fellow social work peeps. they do an awesome job, and i'm so glad they've been able to help y'all out.
another positive day--also a huge praise. i'm just waiting for you guys to announce when you're coming home. that will be such an amazing, wonderful day.
My heart is heavy as well. Sleep tight mommy, daddy and baby Jonah!! My prayers are with all of you and with Stellans family tonight.
Hearts and Hugs
Marie
I've been praying for Jonah and Stellan all day. It hurts to be reminded of the fragility of the status quo ... that things can turn on a dime. We love you so much and are praying that Jonah continues to rally and that his health improves hour by hour, minute by minute. Hugs to you all!
Another great day! Praise you Jesus! I, too, am heavy hearted for Stellan and his parents tonight. God is doing a mighty work in these young warrior boys! What a purpose and plan they must have in their future! The enemy is under our feet along with all of his lies, deceit, confusion and pain! Thank you Lord for Jonah and Stellan and the power that is within them, through you, to fight! Thank you for their lives, their future's, and your promises! We love serving you Lord!!!
I will help you bust out of that joint and get Jonah home! ;)
I am thankful that the drs are working with you and listening to your concerns. Praise God that these drs have devoted their time and gifts and are so wise. Is Jonah really more at risk at home to infection? I would have thought it was the opposite.
I am so thankful for every new post of hope.
Jonah has stolen this family's hearts and we will pray for him as well as baby Stellan.
I hope you sleep well.
God bless you, Patrice.
I'm so glad your days are getting better. Trust your motherly intuition. And my heart is heavy for Stellan as well. But the amazing thing about our God, is loves both babies and is listening to all of our prayers at the same time. Sleep well and am praying for another good day tomorrow for you.
Praise God for a good day! My prayers are with both Jonah and Stellan, and your families.
Praying for all these precious babies. God's strength is perfect when our strength is gone. He will carry us when we can't carry ourselves.
Daisy (alabama)
Hi, Patrice.
I know that choosing a pediatrician is very important. When we finally got to bring my son home from the hospital, we chose Dr. Robert Paynter at Forsyth Pediatrics, Westgate. He obviously has a strong passion for what he does. He will answer every single question you have, no matter how long it takes. He is patient, and explains everything in medical terminology, then he explains it how it makes sense to the rest of the world. He has made me feel with both of my children, that he is caring for them like they are his own. If you would like to interview him, I am sure he would be glad to meet you. And...his nurse, Heather, is equally as wonderful. We have seen her out at the mall, and she knows my kids by name. They make you feel really comfortable putting your childs health in their hands. The phone number there is 718-7777
Oh, my heart is burdened, too, sweet Patrice. I am praying for peaceful sleep for you and MckMama....I can't even imagine what you two must be going through!
Praying!
Dear Patrice,
You've done it again! Made me cry happy, thankful tears for Jonah! How good to hear that he has had yet another good day.
And then to read such a lovely prayer you wrote for Stellan and his family. Isn't it amazing how close we have all become through this wonderful computer world!
Please take care of yourselves! Jonah needs you and Matt healthy and strong for him!
Grannie in Florida
hey patrice. can you take my blog off of your blog list? i'll tell ya why later. love you bunches! i already miss jonah. :( 4 whole days...what am i gonna do? and now i won't know how stellan is doing either! double :(
Patrice,
I am currently doing Beth Moore's study on the fruit of the Spirit and tonight's study was on God's kindness and goodness. We looked at Hagar distancing herself from Ismael and that God's heart broke at the sight of this mother confronting her sons death and God unleashed his loving kindness and refreshed both of them.
It is just awesome to know that God knows the intense pain of intense love; God knows how your feel.
Praying for you and your family. Hope you sleep well and that soon you will have little Jonah at home with you.
Jennifer
Still praying for you and your beautiful boy! How wonderful that he may be home with you soon!!
Luv singingmama
What a blessing it is that Jonah is progressing so nicely. I cannot wait to see a post where you will be holding Jonah in your arms in your own home. I'm so happy he's having a great day. Our continued thoughts and prayers are with you tonight.
Analiza and The Bernat Family
California
Praying for both Stellan AND Jonah. Words cannot possibly express my hearts sorrow for ALL that you both are going through. Praying for God's healing touch and grace on your family.
Praying in Kenya
Lindy
Hi! I'm finally catching up on my blogs and am glad to see that Jonah seems to be doing well from what I've caught up on so far. I saw the cute picture of his flaming arm "socks" and wondered if BabyLegs would work in your situation. They have them at Target now and at babylegs.net. (Sorry if this is a repeat suggestion). Praying for Jonah and Stellan!
It's so great to hear that Jonah is having good days. I continue to keep Jonah in my thoughts and prayers.
I have been praying for Stellan throughout the day as well.
Much love,
~Darlene
Matt, Patrice & Jonah - Just a note to let you know I am praying for you and Stellan as well as all the other babies in this world who need our prayers. After the first time I read your update today, I went to my room and there on the TV screen was a picture of starving children somewhere in Africa and I shed tears for them just as I have for Jonah and Stellan today.
I am not saying this to make you feel that we don't need to pray for Jonah any longer. I just want all of us praying for Jonah to consider praying for all the other un-named children in this world who need God just as much. God has enough love to love them all, enough power to heal them all, and enough compassion to provide all of their needs if we will only ask and believe. Let us set this world on fire with our prayers for all of God's little children.
Love you to Heaven and back,
Aunt Joyce
Patrice...one thing I'm sure someone's bound to have mentioned or you've probably thought of (So why am I posting it? Just in case!) ... if Jonah's going to be coming home so soon, would you and Matt be able to take an infant/child CPR class before he does? I'd also suggest making sure that anyone who's going to be helping to care for him take one. Now, that doesn't mean that you'll ever use it, but one thing I've found...when you have a child that's medically fragile, it's a darned good thing to know. I actually had to use it on Bryson a few times...and twice was just because he choked on his snack...an ordinary household thing, nothing to do with his medical issues at all.
Okay, that said, have I mentioned in the past couple of days how cute that kiddo of yours is???? Zack (my youngest) asked me the other day why my best friend and I were oohing and aahing over a baby (it happened to be Jonah's pics). I had already told him about Jonah, so he knew who I was looking at, but he still asked. I said, "Look, he's just so cute....". Which prompted a mumble about how woman can't stop themselves from making a fuss over babies. (Gee, he's not even quite 14 yet and already making this observation?)
Okay, I'm going now...prayers are still being said for Jonah & Stellan. I hope both little ones do well today and that they'll both be home soon!
The sheer number of families enduring overwhelming difficulties with their little ones is astounding. I thank you for your continued openness about your situation and your belief that prayer and hope is sustaining you. Your boy is in my thoughts often, as is Stellan.
--Kelley in Georgia
Praise God, another good day. I think Jonah knows hes getting to go home soon and he is ready!!! I pray for such a happy, healthy homecoming. Continuing to pray for Jonahs healing and healing for baby Stellan. God is so good!!!
patrice, such optimism and bravery and encouragement. i love how your love and faith in the Lord spills out on every post. what an awesome witness you are. and i too, am on my knees for stellan.
blessings to you as you wean your dear jonah, so he can come home to be with his family.
praising God in the little things, and in the huge. . . in the hard, and the joyful. our God is good.
Wonderful news! If there is anything I can do to help just let me know:)
So happy that Jonah had another good day and that there is serious talk of going home soon! Praise God!
My heart is also heavy for MckMama and I too am praying for little Stellan!!
Lord, please bring both of these sweet boys home with their Mamas!!
Rejoicing with you that Jonah had another good day!
I'm happy to hear that there is a process inplace to get Jonah ready to go home. I know there is alot to worry about, plan for, etc. but there is nothing like having your baby home. We will continue to pray for you in Texas!
So glad to hear Jonah had another good day. Try to get as much rest and done as you can before taking Jonah home. Things will be a lot easier on you. Thoughts and prayers are continuing without ceasing for Jonah, Stellan and families. May God Bless all of you.
Agree with you on all accounts, but mostly love hearing you say, "may both boys (Jonah & Stellan) live LONG (x100!) lives to tell HIS story and glorify their Father who saved them". Amen & Amen!!
Please Lord- be the great Physician, and do the same types of miracles as you did 2000 years ago. Heal these little boys that we may proclaim your saving grace and your glory
Praying for your little guys always! I hope Jonah gets to come home soon! God is so good!
Kami
So thankful for another good day! We're continuing to pray for little Jonah... I can't believe it is almost his 1 month birthday!
Have you considered twittering? Or am did I miss it and you're already doing it? Just a thought.
Still praying for you guys!
Patrice, how exciting that Jonah may be coming home soon! You seem to be an extremely organized and detail oriented individual which will help with the transition from hospital to home. Praying that Jonah continues to improve.
Gail
Annapolis, MD
We are praying for both Jonah and Stellan! Lots of love to both you mommies. I can't imagine. The Ryan's
How wonderful it would be for Jonah to come home with you soon! I pray throughout the day for your family and sweet baby. He has captured my heart!
hoping all is well. Looking forward to hearing some new news. =)
daisy
Still praying in South Carolina!!
Praying on the west coast!
Thank you so much for posting about us. That means a lot to me. Please keep your eyes peeled as you read my next post. You'll see a familiar name...
:)
MckMama
Praying for you in Nebraska!
For His glory,
A family with a daughter who has a very rare skin disorder, too.
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