He did do well during his dressing change tonight, but we're unsure of exactly how much medicine he was on. He threw up his first dose of morphine and Atavan, and had to get more... so knowing exactly how much was in his system is a little difficult. Although there has been some talk of the road to home, we were told today that we're still looking at "several" weeks. They have to ween Jonah off morphine, find some pain medication he can have from home, and get his wounds in better shape to where his pain will be manageable with just Tylenol. This will be a long process involving us letting our support people in on his nightly dressing changes one at a time, "living in" where we take care of Jonah in a suite at the hospital, arranging for a home health care nurse, making sure all our bandaging supplies are lined up etc. before we go home... so we still have a ways to go.
As we were doing his dressing change tonight, I noticed a big lump under his arm pit. He has swollen lymph nodes under both his arm pits and in his groin. His WBC count is up, so the assumption is he probably has an infection. We won't have the results of the blood culture for 2 to 3 days. For now, they are starting him on oral doses of Keflex. Please be in prayer that the oral drugs will be enough to kick this thing - if the blood culture comes back saying he needs some big gun IV antibiotics, we'll be looking at another PICC line of some sort -either in his neck or the broviac. If he has to get the broviac, he will have to be intubated - that is very, very bad considering there is usually tracheal involvement with his kind of EB. NO MORE TUBES! I don't know if the infection might be why he's been so inconsolable. He was also pretty gassy today, and I guess there's still a possibility that he's lactose intolerant (although we've had no indication of that before now). Please pray that we can figure out why he's acted like he's in so much pain and that we can remedy it. I know all you moms (and dads too) know how it feels to know your child is hurting and how completely useless and desperate you feel when you can do NOTHING to make it better. His constant crying was about enough to send me over the edge today. I was in tears myself several times.
Here are some pictures from the last couple days (when he wasn't screaming):
72 comments:
Your son is so beautiful as is your strength and your love for God. Thank you so much for allowing us all to be a tiny part of his journey....
Praying for you from Utah
Kelly
The pictures are so peaceful looking.Prayers for your family and especially little Jonah.
Praying for little Jonah!
Patrice, I pray tomorrow goes better for Jonah, and that he has more days like Saturday and Sunday. He deserves those kinds of days.
You and Matt are also in my prayers. I pray God continues to give you strength.
Praying, Patrice. You're right, it's a horrible feeling when we're unable to help them. Praying that it's as simple as a growth spurt and not an infection, and definitely praying that Jonah has many more great days than bad ones.
thank you so much for the daily updates. i so want your son to be healed and your family to go home. It is sad to hear the pain you and your son are haveing. It is 1am and been checking your blog every hour to hear how you are. As i go to bed i will say a pray. Please get some rest. I wish we knew Gods plan but we do not. I wish your family some peace. god bless
Praying for your beautful baby Jonah and for you too....
Praying that Jonah feels better quickly and will only need oral meds, if any. I am amazed at how he has grown, looking back over his pictures. He has a BEAUTIFUL face. Many hugs for you!
Baby Jonah is beautiful and the pictures of him are just precious. Praying for sweet Jonah and the rest of your family too.
Babara in AZ.
I've worked with kids for a long time - sometimes babies do just scream inconsolably over nothing! Though it does certainly sound like Jonah's not feeling good at the moment, there will be times where he is yelling...and maybe nothing is wrong - he's just doin what babies do! It's awful when they scream, and I imagine twice as awful when he has such a painful condition. He looks like a tough little guy!!
Marie.
Hey guys, I hope today is a better day for little Jonah, and for ya'll. It's hard to know they're in pain, but to not know what's causing it. I like the little sling thingie ya'll have set up for when he's sleeping...that's a cool idea! And I swear, he gets more and more handsome every day... Ya'll keep hanging in there, we'll keep praying...
He is such a handsome young man!!! He is never far from my thoughts and prayers! And you are also...I can't imagine the pain, God however, knows. Rely on Him.
oh he is such a handsome man! we are continually praying for all of you!
My heart is breaking for you, Matt and Jonah. I definitely know how it feels when your child is in pain and you can DO ABSOLUTELY NOTHING! It's a bad bad feeling. I hate it.
Hope today is much much better for all of you.
Heartfelt Love,
Sandy
He is so so sweet! I'm sorry he had a rough day! I hate to hear that! You are so good at keeping us updated and thank you for that! I will continue to keep you guys in my prayers!
Shannon
I was just wondering how much he weighs now? He looks like he has gained right much weight since birth and looking at his pics. He looks so peaceful in the last pics.
These are two of my favorite quotes:
"Never, Never give up." Jim Valvano
"So do not worry about tomorrow for tomorrow will bring worries of it's on. Today's troubles are enough for today." Matthew 6:34
Thanks for the requested info on "ways to help" You are not in this alone. You have a world of people just begging ways to help out with monetary monies, but most of all our God is the ONE who will ultimately be the hero and helper in all of this little fighters life! "Our God is an awesome God"
Sending hugs, kisses and prayers to you, Matt, and "our" Baby Jonah
Nancy Lee:)
I ready your blog every morning, and I am praying for you now. I sing one of my favorite songs to my kids a lot, and I think of that song in my head when I see pictures of your little man. Do you know "Fingerprints of God" by Steven Curtis Chapman? I truly can see the Fingerprints of our Father in Heaven when I look at your baby, and he is a wonder in the making and God is NOT through. Hold on to the faithful One.
Blessings,
Daisy (Alabama)
Praying that today is a better a day for Jonah. That little guy is absolutely beautiful! He is precious. He looks like he is trying to help with his bottle in the picture of him enjoying his bottle.
I will be praying that everything begins to fall into place according to God's plan so you can get your sweet boy home.
Have a blessed day. I will be praying for you today too!
Jennifer
Brooklyn, MI
Always praying, Patrice. Thanks for letting us know exactly how we can be lifting Jonah and the rest of your family up to our Father. We love y'all!
The Kernodles in Dallas
Prayers to you all. He looks beautiful in those pictures.
He is beautiful.
There are no words to describe how it feels to watch your child be in pain. I think about Jonah all day. Your story has struck such a chord with me. I tell everyone I know about him so they can pray for him and pray for things to get easier.
I am so touched by your story and pray for you guys constantly. I know it is so stressful when your little one is upset, but sometimes, babies cry, it could be a growth spurt and he is more hungry, it could be colic, it could just be practicing to use those little lungs more. I know it is so easy to focus on the EB and think everything is related to that, but he is still an adorable little boy and growing up is hard in and of itself! Your strength amazes and inspires me!
I know you suspect Jonah has an infection and I also know he is in pain because of his blisters but....you mentioned that he isn't happy unless he has a bottle in his mouth....he looks to be gaining weight and he is almost 3 weeks old--maybe he is having a typical growth spurt? Just an idea, mine have had these periods often as newborns. Praying for you EVERYDAY OFTEN and thinking of you JUST as much! Much, much love and so very many sincere prayers daily from my heart to yours.
Hi Patrice. He may ahve just been having soem big crying days. I know we had a few days like that with my son, where he just seemed to creasm for two days straight and couldn't be consoled. We ahd no idea why! But he was also very gassy.
Hope today is better, and I will pray for him esp. concerning the infection.
Thanks for keeping us updated. My day doesn't seem complete until I've had a report on your precious Jonah.
Maybe if he has a bit of an infection, that is why he is inconsolable. I know when my baby was sick a couple of weeks ago he was extremely fussy. Also, what another poster said (Susana) is if he's going through a growth spurt, he might be crying unless a bottle is in his mouth.
I'm praying that he doesn't require anything more than oral antibiotics and that he has a great day today. And, as always, we're praying for you and Matt and for a miracle for sweet Jonah.
Karla
YES excessive fussiness is a sign of infection. Hopefully its not in his blood and just on his skin.
If you are going to be staying weeks more, maybe ask if transferring him up to the regular peds unit with a private room is an option. You'd be able to stay with him 24/7 and the less traffic around him the less chance he'd pick up an infection or a cold or something. You could have him in reverse isolation which means ANYONE who comes in (besides you) would have to be gowned, gloved and masked for his protection. Just something to think about.
Both my kids got infections in the hospital, my daughter's in the NICU, and my son's in the PICU. I am not a big fan of hospitals:)
He could have silent acid reflux which is common in EB babies and since he lays on his back a lot, it could be irritating his throat. I remember when my daughter was in the NICU there were other babies (preemies) with reflux that they got to sit upright in a bouncy chair for a few hours a day to help.
Good luck
I have to echo a couple sentiments from previous comments - sometimes, babies cry and not every cry is EB related.
My 2 1/2 year olds nickname is STILL Fussy. She used to tell people her name was Fussy. She cried, whined and fussed constantly!! And, she is healthy as possible.
He is at the age that he is probably going through a growth spurt and wants to eat constantly, coupled with the fact that he probably doesn't feel great with an infection.
I am so sorry that you have had a couple rough days and I will pray that you have good days to come!
praying for all Jonah needs!!!!
Oh, Patrice, we are praying that Jonah will have another weekend like last weekend (and start it a little early). We hope that things will start to improve and he will not have an infection. He's so beautiful! Thank you for the pictures. They are a great reminder of what we are praying for. Dawn M.
Hopefully you see this...just wanted to let you know that I have sent out an Amex Gift Card (it's not much, but am sure it can help) - I had to send it to the church because Amex won't send to P.O. Box. Also I had to truncate the name of the chuch so I could get Jonah's name on it! Praying for you every day and for Jonah!!
Oh goodness...I wish I could reach out and give you tons of hugs of strength. I cannot imagine the pain of seeing and hearing your child in so much pain and feeling so incredibly helpless. I am checking in with you daily and praying for you. I can't start my day without checking in on "My Jonah" as I've taken to referring to him personally (he's just a sweet, sweet looking boy) even though I know he belongs to you, he's lifted up in prayer by me and so many others. Continue to be strong and hopefully he has a better day and weekend with you. Hugs to you! (( )) (( )) (( )) from MI!
Hi Patrice, I wanted to offer a suggestion about his screaming - do you think he could possibly have reflux? My son had that and he would wake up from a sound sleep, screaming like he couldn't get comfortable and something was bothering him. We didn't figure it out until he was probably 2 or 3 weeks old. He didn't do any major spitting up until later, so it wasn't so obvious at first. We tried prevacid and one other medicine that didn't really help, but liquid prilosec did the trick. That may not be what's going on w/Jonah, but I figured it may be worth asking. I hope that the oral meds take care of Jonah's infection and that he (and you!) start feeling better soon. I will continue praying.
Praying for a good day today. I love the pictures of Jonah - he is so darn cute and pulls at my heart every time!!!
I'm praying for a day with less crying...calm moments you can just be with Jonah...wisdom and peace as you continue on this journey...and so much more.
Hugs and prayers!
So sorry that your little man isn't feeling well. I will be praying against the infection and that he would get the relief and rest he needs. I love the pictures. It always makes my day to see his sweet face.
My heart just breaks to see Jonah and know that he is in so much pain. I know God has a plan for him, and only He knows it. I will continue to pray for your entire family and Jonah - that he is completely healed, if that is God's will.
My heart just breaks to see Jonah and know that he is in so much pain. I know God has a plan for him, and only He knows it. I will continue to pray for your entire family and Jonah - that he is completely healed, if that is God's will.
Hello Patrice, Matt and little Jonah.
I am unsure how I found your story, but I did and now I am thinking and praying without ceasing for all of you. I am a former neonatal nurse and your story really makes me miss what I use to do. Your son is so sweet! I'll bet you just what to eat him up! He is such a cutie pie.
One of my favorite quotes that I hope helps you today on this first day of spring...
We don't know what the future holds..
but we know WHO holds the future.
I pray this helps you today and in the days ahead. Try not to think about anything other than this moment. My prayer for you as his parents is that you feel the peace that passes understanding, and your whole being is filled with strength to be there for your little boy.
I pray for the relief of pain for your little one and a peaceful day and night.
I don't have to tell you two that Jonah means DOVE.
What a peaceful name you have given your little fella.
Peace and Love,
Linda Dodds
Davenport Iowa
Thank you for the pics of sweet Jonah. He is so cute and really growing. I am praying constantly for all of you, especially sweet Jonah. He is a fighter, as we have all been witnessed to. I pray the oral antibiotics will clear up his infection and he begins to feel better soon. I pray for strength for you and Matt and your families. Keeping you all in constant prayers, with love. God is so good!!!
Continuing to pray for Jonah. What a sweet little boy :)
I came across your blog through a friend of mine. I am praying for your beautiful little boy Jonah. I have twin boys (Caleb and Samuel) up in heaven with your son Gabe. My heart goes out to you and your family. God is wonderful and faithful and will get you through this. I held on to this verse: "I know He has plans to prosper me and not to harm me; to give me a future and a hope." Jeremiah 29:11
I will keep you guys in my thoughts in prayers.
His head looks FANTASTIC!!! It looks the best that I have seen. If you think Jonah is Lactose intolerant One thing that helped our son was to put him on Neocate. The formula is special and we went from a baby who was screaming and inconsolable 24x7 to a great little boy.
Patrice, You're so right that there's no more hopeless feeling than not being able to take pain away from your baby. I know you and Matt would trade places with him in a heartbeat if you could. While "weeks" is a long time to think about staying in the hospital, I am heartened to hear that it's not just an open-ended stay or that they don't think he'd be able to go home at all. I am praying for miracles every day. Love you guys so much!
I have been praying for your son and family. Maybe he is just going through a growth spurt. I have 3 children and that's how they acted when they went through a growth spurt. I'm praying that's all it is.
I have no idea how I found your blog but I do know it was God who wanted me to see it. You now have a handful of people praying for you here in Idaho. Praying you feel God's comfort & healing surrounding you & your family & especially sweet little Jonah. What a plan God must have for this precious little guy!
Jonah looks so peaceful in the pictures you posted, so sorry you are having to hear him scream. It can really get to you, even with a healthy child. I am in prayer for all of you without ceasing and think of you so much during the day. Praying his infection can be handled in the simpliest way. One of the hardest things is a baby cannot tell you if they are hurting or where they are hurting. Leigh is lactose intolerent and she screamed a lot until the doctors finally figured it out. But he should have other symptoms if it is that. She has had to deal with it all of her life. The NICU experience is like a roller coaster, you have up and down days. My twin granddaughters were in it about 40 days and I did not miss a day going in. You never knew what to expect, but we took it a day at the time and that is what you need to do. Please try to get your rest, Jonah needs you at 100% during the day. May God bless all of you and especially sweet Jonah.
I love seeing pictures of sweet Johan. What a handsome guy! We are still praying for you and still believing in that God will do a miracle here.
Blessings in abundance,
Alison
Hi! I've been following your blog since Jonah was born. Praying for him often, and for you even more. When I read your post today about him screaming unless there was a bottle in his mouth, my first thought was to look at the date. I know he has a ton of stuff going on in his little body, but is it possible that he's having a typical 3-week growth spurt and wants fed that much more often for a few days?
Hate to give advice to a "stranger", but I couldn't pass this up in case it's a simple case of hunger pain this time instead of physical pain.
I know how horrible it must be to see him so upset. Remember, too, that even non-hospitalized babies at his age can be VERY fussy- colicky stuff, growth spurts. My son did a lot of crying those first few weeks. I pray that its that and not pain from the infection or other stuff.
We are praying for you guys!
Jonah is an adorable little boy! I have been following his story and wanted to let you know I sending my prayers from St. Louis, Missouri!
Oh my, pictures 3 and 4 make me want to just melt into a little puddle! what an absolute doll he is!
I mean ALL your pictures are really great, but those two just hit me - if I weren't 61 years old it would make me want to have another one myself!
Hang in there you guys, we're gonna keep praying - and loving - for as long as it takes!
Grannie in Florida
I'm sure many have said it, but the fact that he wants a bottle sounds like a growth spurt.
Also- gassy... Can you give him Mylicon? It's safe to receive up to 12x/day (nearly every feeding)
My baby was on a liquid RX for acid reflux & was also really, REALLY gassy. It would cause him to double his little body over in pain until you could tell all the gas was out. Mylicon was a HUGE relief for him.
Be sure you are pumping frequently enough to get him the "hind milk" which is "heavier" (I believe it's higher calories too) & their little bodies will take longer to digest it. The "fore milk" is digested so quickly that it can cause gas issues. (This was all info from our lact. consult., as well as from the book "ultimate guide to breastfeeding" which has a lot of helpful info, esp. for complicated situations).
All that to say... You all are daily in our prayers. I couldn't sleep last night so I just interceded on your behalf.
With Christ's love and blessings,
Am in WA
He is adorable! Keeping the 3 of you in my thoughts and prayers!
Jonah is one beautiful baby boy! I am sorry to hear he has been having a hard time. Keep praying and we will too!
I'm sorry the last few days have been hard. I frequently think of you throughout the day and pray for you and Jonah each time I do. Hang in there!
I hope that today is better, that Jonah does not have pain, that his body continues to heal, and that you and Matt have continued strength!
It is exciting to even hear that you guys are starting to talk about the process of going home! It may be overwhelming and scary, but you can do it!!
Praying for you guys!
I was thinking about when my own son was fussy when he was this age. With Jonah lying down so much and not able to push out the gas like he would normally have to do, I bet a lot of his fussyness is gas. Have you tried Mylecon? We called it "liquid gold"! If it is gas, one dose of mylicon and you will know- it works immediately and there is no dosage max. It's worth a try, right?!
I am lurker...I just wanted to let you know that your family is in my prayers. Jonah is beautiful...really, one of the most beautiful babies that I have ever seen.
Stand firm in Christ!
He look so peaceful. His face looks like there is nothing at all wrong with him. What a blessing he is!
Sorry to hear that Jonah is having a rough time. I am sure that adjusting his meds as he gains weight has to be difficult. Praying that the oral antibiotics wipe out the infection. Thank you for the pictures...Jonah is beautiful!
Gail
Annapolis, MD
Thinking of you and your prescious Jonah ... God Bless!
Hugs from MN!
Rebekah, Jaden and Charlotte
Praying for you. May God heal Jonah and continue to give you strength and courage.
Jamie
Nashville, Tn
Praying for youy family. Jonah is beautiful!!!
We will continue to pray. The total change in mood happens in all babies, but since he's in the hospital of course makes you think the worst. Hopefully he was just moody and it isn't anything serious. Be encouraged that God knows exactly what is going on with Jonah and hurts right along with him and you.
I have not commented yet, but have been following your story since Jonah's birth. Like others, I am inspired, amazed, and awe-struck by your faith and insight. I know God is weaving a wonderful story with your sweet boy... one that WILL have a happy ending :)
I am praying for you and your family. Jonah is precious and I don't know if it's just me, or the camera angle, but Jonah's sweet face looks like it is getting BETTER! I sure hope so!
Sending you love and prayers from Kansas!
Hello,
I've been reading your blog ever since Brianna Morrison posted a link to it on her blog and I'm very touched by your story and by Jonah's and you and your husband's strength. While I can't give you any medical advice, I did want to tell you about a very special place here in Montreal, Canada, called St-Joseph's Oratory, it's the largest shrine in the world dedicated to St-Joseph and it was founded by a man named Brother André who was very, very well known for his ability to help people through his prayers to St-Joseph. Thousands of people were healed after prayer with him and millions of people still come to the Oratory every year to pray for healing. I've worked at the Oratory for nearly seven years now as a tour guide and I can tell you that there's no place like it, it's filled so much hopeful, positive energy. Here's the link to the Oratory's website : http://www.osj.qc.ca/en_1007_index.asp
You can contact me if you'd like for information about the shrine. I'd be happy to help you if you'd like to send prayer intentions to it or anything else. In the meantime, you and Jonah are all in my thoughts.
i enjoy looking at pictures of jonah! he is so precious!
What an absolutely adorable little face! I think he just keeps getting cuter every day!
Yes, you do have a long road ahead, but you WILL continue to get through it, one day at a time.
What a precious little boy. Praying for peace, comfort and healing for your sweet Jonah.
He is so beautiful. I love the picture that looks like he is holding his bottle. Jonah and your family are in my prayers. Jonah is an inspiration as are you and your husband.
My first thought is Growth Spurt, This would be a typical time for a growth spurt to be going on and can last several days.
Jonah is so precious, it pains me to read about him being in pain and seeing the blisters...and I don't even know you. I pray for your family every night and thank God that He gave Jonah to such a strong and faithful Mommy and Daddy.
We're praying for you Jonah !!
Hugs from Ca
Natalie
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