Sunday, March 22, 2009

jonah - sunday, march 22nd

Today was a good day with Jonah. He did well with his bandage change. I think the higher dose of Ativan (still not a large dose) is the ticket. I think we could probably start weaning him off the morphine now. (Ugh, I hate that I just wrote that - too good to be true?)
His blood culture remains negative, although he is still on Keflex because of his "wound culture" (the biopsy spot that's a little infected). At one point, they actually thought he had MRSA (resistant staff infection) on his skin, but it looks like the Keflex should take care of it after all. He began taking Bactrim (an oral antibiotic not typically used on babies under two months) when they thought it was MRSA, but he's been able to stop that now. Bactrim is not the greatest option because it could have made him jaundiced or neutropenic (low WBC count), but is still much better than IV drugs. Had that not worked, we would have been looking at a broviac.
I'm beginning to feel each day there is one day closer to an infection that will require IV antibiotics. As great as they are, they can do very little for him at the hospital that we can't do at home. We can do his wound care, and we can go home on Ativan and Tylenol or I can wean him off the morphine myself. The risks are beginning to outweigh the benefits. Unless there is a solid reason we need to stay, I'm going to push for us to be out in a week. If Jonah gets an infection, it means broviac, which means intubation, which means a very high possibility of respiratory problems (something we have not had to deal with yet - thank God, but is very common in Junctional EB patients). Right now, I'm thankful for the extra hands, but I know we will have lots of help once we're home, and I think all the nurses Jonah has wooed will be glad to stop by for a visit. Brenda? Sabrina? Stacey? You know you can't resist.
Just look at this face...
I LOVE me some Jonah snuggles. What can I say? He's spoiled. He's rotten. It's the best.
Uncle Peyton FINALLY gets to hold Jonah.
A handy dandy cloth diaper designed especially by Nana. A really soft knit t-shirt with a pocket. We slipped a trimmed down pampers in the pocket and voila! Soft on the outside, absorbent on the inside. Still a little leakage out the sides, but certainly an excellent work in progress. Go on with your bad self, Nana!

53 comments:

Mike and Molly Spivey said...

We are still fervently praying for Baby Jonah! I am enlisting all the prayer warriors I know! I know you are ready to get the little man home! How we are praying for God's Healing Hand on Him!

Oh - I love this baby and I don't even know him!

Anonymous said...

Patrice,
Have you considered a fundraiser for Jonah through www.insiderpages.com? You create a team, we join, then we review places we shop. Each review gets a dollar.
My church did this for a family who lost their home in a fire, and we raised a lot of money to help them rebuild and get clothes and things.
You could do it through your church, and raise money for bandages, cloth diapers, medicine, anything Jonah needs.

I was glad to see Jonah had another great day! Once you figure out what kind of cloth diapers work best, you should post details so we can have our local churches help make them!

avbernat said...

Oh my goodness, he keeps getting cuter with every picture you post. You are all so truly blessed to be in the presence of pure cuteness and a miraculous and determined fighter. I love ending my Sunday evenings with reading your great posts. I will pray hard that Jonah fights of infections and does not get jaundice... you definitely don't need another obstacle before taking home. I can't wait to see pictures of that either! HEE HEE!

Loving and Praying for Jonah on the West Coast

Analiza and The Bernat Family
California

Brandy said...

He's so adorable!! just keeps getting cuter with every picture :) I'm so thankful for the continued good news and am praying that he'll be well enough and ready to go home with you guys SOON!

Shannon from Mn said...

I find myself not able to go to bed at night until I have read about Jonah. He is precious and such a fighter. I am so happy to hear you talk about getting him home. If there is anything we can do to help you do that please tell all of us so we can get to it.. Keep the updates coming and God bless Jonah!!

Tracy said...

I would definitely start to push for his homecoming. You are absolutely right about the risk of infection outweighing the gain of the staff caring for him. It sounds like you are down to meds and dressing changes which could be easily done at home. While it wasn't ideal, our NICU did send some babies home on morphine (dyed blue so it was never accidentally confused with any other meds.) Hopefully you can get him to Ativan and tylenol. To speed the process at discharge, you should start finding out now which home health companies your insurance uses and make sure they carry the dressings and other supplies you will need at home. Sometimes they have to be ordered. You also may have to send extra paperwork to insurance so they will cover the exact brands you want. Again this can take a few extra days so not a bad idea to do it while you are still in the hospital. Good luck in what is hopefully the homestretch.

Katherine said...

I know how anxious you are to just have sweet Jonah at home with you. I'm so glad you feel confident enough to handle it ... I'm not sure I would be as comfortable with the idea as you are! You guys continue to amaze me, and I can't wait to see you and hug you around the neck. I was going through withdrawal, so I was glad to see pictures tonight. :) Love you so much!

RNRPRN said...

I was wondering if anyone mentioned the amazing benefits of breast milk to you? I suspect that you;re not nursing Jonah as I've never seen any mention of it. I'm not sure if it's too late, but you may want to consider nursing him. Your milk contains anti-bodies and other amazing elements that no formula can even remotely mimic. These antibodies can help him fight off infections and help him heal faster. I FIRMLY believe that my 7month old made it alive and infection-free of all of the ruthless viral/bacterial illnesses that my 4-year-old new-preschool attendee delightfully herself caught and brought home. She managed to infect my 2 year old, but my youngest never caught a thing. I cannot tell you how much I believe that that needs to be attributed to breast milk. You may see wonderful results with some of this powerful source of nutrition.
God bless little Jonah.

Jenny said...

Sending much love and many more prayers that you can take Jonah home soon!!
Hugs from Perth
Jenny and Doug

Anonymous said...

Seeing his cute face just lifts my spirits! Still praying for Jonah - for all the strength necessary to get him home and well on his way in what promises to be a very blessed life!!!

The Peoples Family said...

As I look at the blog day by day, I think the wounds that we see are looking better as each day passes. We can pray that those areas stay wound free and that the unexposed areas begin to heal.
Passing this on to an internet Monday devotional group I am involved with.

Kara said...

Still praying for baby Jonah. Gosh is it possible he is getting cuter every picture?!?! Even though I do not know you or baby Jonah I love you guys as family and pray for you along with my own. God bless and I hope the little man gets to go home where he belongs soon!!!

Anonymous said...

Jonah is looking fantastic!! Still praying for you all.

nancy said...

Push, Patrice, Push to go home! It sounds like a no-brainer to me! The time has come and you feel you are ready! He is such a big boy in these last pics and beyond beautiful! Nana, way to go inventing this diaper for your baby!

daphne carter said...

We are from Winston-Salem and our little Granddaughter, Maddie was at Brenners for seizures at two wks. Now 15mon. and fine. Our church, North Myrtle Baptist Church, is praying for Jonah and your family. Every night, he is the last person I pray for.
Love to you all,
Daphne Carter
North Myrtle Beach,SC

Stephanie said...

HOME! HOME! HOME!!! I cannot wait until you get to take him home and out of that hospital. Praising God for their care but so excited for Jonah to be home and taken care of by the people who are MOST qualified.
oooh, I want to just eat him up!! He is so beautiful. God's power evident through that sweet, sweet face.
Go, baby, Go! Into all the world preaching the gospel. What a high calling on Jonah's life... and yours and Matt's!!

Laura said...

I had forgotten your mom could sew. So cool that's she's able to help you with at least starting to figure out Jonah's diapering issues. I remember she used cloth diapers on you and your siblings at least through Sarah, so I'm sure she'll be a big help.

You guys continue to be a big part of my prayers and now I'll add that going home become a reality!

Looking forward to all the new designs you guys come up with for diapers and clothes. The flames are really cool.

Laura S.

Channe said...

What a great idea about the diaper - hope Jonah gets to go home soon! We'll continue to pray against infection.
The Karabas

Stephanie said...

Praying Praying Praying for healing and HOME!!!!! :)

Love the diaper..you go Nana!!!!!

Sandy Moore said...

I Praise God for inspiring people to become doctors . . . and let's praise Him for those who have invented medicines and for those who have invented medical equipment! AND, let's praise God for parents like YOU Matt and Patrice!! May you enjoy all of your time with Jonah. I love you all . . . and don't know you, have never met you, but we are brothers and sisters in Christ. Please know that I continue to pray for all three of you.

God Bless.
Hope you have a wonderful day.
Sandy Moore

maurerjen said...

Oh my goodness, he's adorable. I just cannot get enough of looking at that boy! I'm so excited that you found something that would work for Jonah with diapering. If what your Mom made works, I'd be glad to take her pattern and sew you some. The more you have the less laundry you have to do, and the more time you have for snuggling. :)

Holly said...

He is so cute! How much does he weigh now, he looks so BIG. I love the little hats, especially the green one. We are still praying for Baby Jonah.

Michelle in Va said...

So glad to hear about another good day!! He is so handsome. He does look like he is thriving. He looks so big. Continuing to pray for sweet Jonahs healing. Praying no infections and you can take your sweet baby boy home soon. Continuing to pray for strength for you and Matt and your families.
God is so good!!!!!

Anonymous said...

Y'all are so awesome!!! We'll keep praying!
One week could be great!
Daisy

Anonymous said...

You can certainly go home on ativan and methadone! We did after my daughter's open heart surgery and it was no itty bitty dose either. I totally agree that the longer you stay in the hospital the more risk for infection. You are better off at home with a great support system than exposing him to the germs that lurk everywhere in the hospital. My daughter THRIVED at home and Jonah will too :)

Kristen said...

I had a dream last night that Jonah was home. I hope that this does happen soon. Still praying all the time and lifting this little guy before the throne!

Mindy said...

WOW! Home. I am excited and nervous for you. I think you know what I mean. More excited than nervous. Hey, Is he Long or is it just the bandages? He looks tall!! He is SO cute!

michelle said...

Go Jonah! Praying you get to go home soon...with lots of prayers!

Julie said...

Every time I see pictures of Jonah I think he is cuter than the last time I saw him!! Thank you for sharing and I'm so glad he is having more good days. I am praying for you to get him home, for his infection to clear and for a great week!!!

Hugs and prayers!

nancygrayce said...

I'm confident you can care for your sweetie at home! I'm praying he goes soon and no infections! Honestly, this blog family is full of prayer warriors!

Anonymous said...

Keep moving toward getting home - the longer he is in the hospital, the greater risk of infection. AJ got MRSA in the hospital before he was able to get home. It's just another thing that a child with EB does not need. I'm so happy you are moving closer to that day and that Jonah is doing so well.

Barbara and AJ (RDEB 15 months)

MelH said...

Patrice, we are still praying relentlessly for Jonah. Praying for no infection, praying for a short hospital stay, praying that God holds this sweet boy close during the weaning from Morphine process and praying you will be homeward bound soon. And as always praying for a downright miracle in healing and long and posperous life with your boy. I love this boy as if he was my own. I honestly feel God brought me to your blog. Following this journey has changed my life and made my heart grow by leaps and bounds. I will always be proud to call myself a mother and woman of God next to you, Patrice. You are nothing less then amazing.

Much love,
Mel

Anonymous said...

I am still praying and praying for Jonah's health. For his infections to clear up and for him to get a clear Non-Herlitz diagnosis. I praise all the progress he has made. I use cloth diapers on my baby and they are so flexible. Check out Precious Dignity. I know from experience that the woman Deanne is an absolute sweetheart and could custom make you some diapers for Jonah. http://preciousdignity.myshopify.com/

I haven't seen you post about Jonah not wanting to take a bottle so that sounds very promising. Keep up the hard work with pumping. I have nursed both my girls and know it is a labor of love to be pumping and bottle feeding but know that YOU are keeping him so healthy. Much love and prayers,

Karen in Boston

Sara said...

You can take Jonah anytime. It called signing him out AMA...Against Medical Advice. It just means you cal sue the hospital if something happens to Jonah at home. Its something doctors and nurses will NEVER tell you you have that option. I almost had to do that with my daughter. The day I went into do it, the discharge papers were waiting for me to sign!

It would be a good idea that is week you find a wound care supplier i can give you some names if you don't already have some.

2- get a home health care nurse set up and make his 1st appointment with his pediatrician. That's something most hospitals require for all babies.

If you can do all that by Thursday and the go in there Friday and tell them you are ready to take him home!

The longer he is in there the bigger chance he will get MRSA and that is something you don't want!

The Hill Family said...

I am one of your many blog-followers! I just have to say...He is growing so much. He is looking better and better with every passing post. I am praying for you and him. Stay strong and God Bless.

Mimi said...

Always praying for your family! God is good! Jonah is adorable!

Kami

Watts Family said...

Nana's are the best! Hugs and prayers coming your way!

Many Blessings,

Amanda

Anonymous said...

Hi Patrice,
I am a NNP in a NICU and want to ask you if you were definately told that Jonah would have to be put to sleep to have a broviac placed. I have seen very many babies have them placed at the bedside by the pediatric surgeon. In my experience, it is very rare that a baby needs to go to the OR. Usually a baby is given a local anesthetic, along with something like morphine or ativan. Perhaps it is not possible for him to get a local injection? If the issue comes up, be sure to ask. My impression has been that you don't want him put to sleep which is why I am contributing this. Also, to comment on someone's suggesting to take him home against medical advice( AMA)- sometimes insurance will refuse to cover the hospitalization.

Anonymous said...

He is looking better every day.Love and Prayers to/for all.
2Shoes

Mama & Papa Griz said...

I am not sure how I came across your blog, but I am praying for you and your son. But in one of your posts you asked about less blisters (where you stopped the gauze) while I know it is totally different, my son was burned in a propane explosion and we had to do the wound care just like you are doing with your son, we had a layer called "burn pad" , then gauze, then the netting. But the burn pad we would put in the aquaphor and play cut and paste and place this directly on the skin, then the gauze. This allowed the cream to get in there and work, rather than being absorbed into the gauze. The burn pad was amazing! It made bandage changes less painful because it would not dry out and stick to the skin. If you go to my blog and click the label “Blessings” you can see what burn pad kind of looks like. It is what was sticking out of the gauze of my sons’ bandages. I hope this helps if you have any questions please feel free to email me, bbkdavis@msn.com We were in the Burn Center at the University of Utah.

Anonymous said...

I encouraged you to keep moving towards home but I am not reccommending that you do it against medical advice. I'm sure your doctors want your family home together too. Take the time to set up a good plan for Jonah, you will be so busy when you get home that you won't have as much time to work on supplies, insurance issues etc. We will keep praying for you.

Hilary said...

Praying for baby Jonah and your family!

Beth said...

He is so sweet!!

Nana did a great job making that cloth diaper!! Go Nana!! Love it!

Praying for Jonah and for you!!

Wendy said...

Once again, Jonah is just so beautiful! His precious little face is looking so good. I hope you're able to get him home soon.

Susana said...

I hope your push to bring Jonah home soon is 100% successful. I completely agree with the infection risks as long as you are at the hospital. I will pray for this for you and pray that Jonah will continue to do well enough each day for this too, along with all the other prayers I offer in behalf of you, Jonah and Matt continually each day. I am so relieved each day to see posts such as the ones as of late. You are in my thoughts and my heart more than you could ever realize. I have never had a situation like this that isn't "close to home" so to speak touch and affect me in a way as your family has. Sending so much love to you, Jonah and Matt and, of course, daily prayers too.

Susana said...

OH, by the way, I think the fundraiser idea mentioned in one of the first few comments of this post is a fabulous, fantastic idea. I know there would be SO many people helping to spread the word of it and donate as well!

Anonymous said...

I am so excited over your continued answered prayers! You don't know me but I was asked to pray for you guys by a friend. I hadn't checked to blog in a couple of weeks and I am astounded at how good Jonah is doing. Praise the Lord for every step in the process. You have my continued prayers. I hope you get to bring him home soon!

Christie - Raleigh, NC

Molly said...

He is so very precious! Praying for you.

momma said...

he is adorable!

Jessica said...

What an amazing story you have. My heart goes out to you, your husband, and little one. Praying God's best for your entire family.

Melissa said...

Jonah is so precious and is always in my prayers. I hope that you will be able to bring him home soon. He looks so cute in his cloth diaper! I had wondered if you had thought of cloth diapers for Jonah. I love them for my baby b/c they are so soft.

Martin Family said...

He has really healed up so much! What a precious and beautiful face! You have every right to be proud, he is amazing. Your courage is awesome! I love the verse from Isaiah! So true! HUGS!!!

Lauren said...

I found your website through another friend's blog. Your little Jonah is so precious. He is gorgeous. I can't even begin to imagine the journey that you guys are traveling right now. I just felt compelled to leave a comment because the Lord placed a scripture on my heart to encourage you with. It is one that really ministered to me as we traveled on our own difficult journey. I have twin girls that were born 12 weeks early at 1.5 and 2.5 lbs. Praise God that they are healthy and thriving girls, but we struggled with a lot of unknowns while they were still in the womb. The verse I want to share is Deuteronomy 32:4. "He is the Rock, his works are perfect, and all his ways are just. A faithful God who does no wrong, upright and just is he." I had to keep reminding myself that God is perfect and He does no wrong. It is not in His character to mess up. As hard as it is to watch your baby boy fight for his life, God didn't create Him wrong. He was created perfectly. My prayer for you is that you look at Jonah and see God's perfect work. I know that that might be hard to hear, but I hope that it may have encouraged you, if even just a tiny bit. I'm praying for you.