Monday, June 29, 2009

prayer request

Update: We did dressing change from 5:00-6:30, and at that point, Jonah did not have any blisters. Maybe good news? Maybe not. I don't know what the turn around time is for cause and effect blisters, because I can't usually determine the cause and effect. I mean, he rubs his face ALL THE TIME, but I can't say, "Oh that blister was caused by that time he rubbed his face." Normally, we wrap him one day and then 24 hours later is when we find new stuff. So... still be praying. It literally will take a miracle for him not to blister. But hey, that's what we'll pray for. I'll update when I know. And just so you know, I'm not super angry with the nurse or anything who mishandled him. I mean, obviously, I wish he had been creative in his problem solving and figured out a different way, but I know more about EB than he does and it's MY responsibility. I'm not beating myself up or letting the guilt get to me, I'm just saying. I'll always be the EB expert, and it will always be MY job to educate. That's just the way it is. And for the record, he was great at drawing blood and only had to stick Jonah once, and got the whole 10 cc's in one shot. I was extremely thankful for that. I just felt it important to clarify that sadness and worry are more my emotions than anger. That same nurse has been a jewel for us figuring out meds and answering my (almost daily) questions. He even went and dropped off Jonah's morphine prescription refill one day because it couldn't be called in, and I couldn't leave the house. But yeah, I plan to take pictures and show the staff the result, just so they understand the effects and WHY we have to be so careful. As always, thank you so much for keeping Jonah in your prayers.
*********************************************************

Jonah just had his fourth month check-up and things look pretty good. Dr. B was happy with his height, weight, and head size, and they are all consistently on the 25th percentile curve.

I do have a couple prayer requests:

- There is a wound on his thumb that she seems a little concerned about (and that seems to be causing him some pain when touched) and has asked me to keep an eye on for infection. Please pray that Jonah will continue to resist infection, and that Matt and I will be able to discern the "subtle" clues (her words) that let us know that it truly is infected. I'm just so afraid of missing something.

- They had to take 10 cc's of blood today for his genetic testing. When they did, the nurse used a tourniquet on his arm, which put a ton of pressure on his skin. They put those things so tight! It took me off guard, and even though I said something about it, I kind of got the "we have to do what we have to do," so I just stood by while they did it. I didn't even think to get them to pad it with some Transfer or anything. Also, instead of just putting some pressure on his injection sites, the nurse just rubbed and rubbed the shot spots. Again, I asked if he had to do that, and he said yes. Whereas, after talking to the DebRA nurse, she said just pressure without the rubbing would have been sufficient. Please, please pray that Jonah will not blister terribly on his arm and on his upper thighs. I'm so scared as to the damage that may have been done. Ten minutes of stuff like that can cause us three weeks of healing work and Jonah a lot of unnecessary pain.

I just don't feel like I was a good enough advocate for him today. The only part of the blood draw I had thought about was the needle part, so when they put the tourniquet on him, it just completely caught me off guard. And he's had plenty of vaccinations, and they've never rubbed on him like that, so I didn't even know that was a possibility. I definitely would have told them NOT to ahead of time. I just feel so responsible. It's hard when you know how hard you work and how diligently you care for your child so he will NOT blister or get infections, and then, all of a sudden, he's in someone else's hands, and you feel like you have no control. I just didn't speak up more because I didn't know what was medically necessary.

But now, I'm educated. I just hate that Jonah has to suffer for me to learn the hard way.

Please pray that it won't be bad. When he's gotten bad blisters on his thighs before, they've grown and grown to where the whole top of his thigh is just raw, open skin. And it is impossible to wrap him there, because even though I wrap him up to his groin every time, he kicks his legs and everything just rolls down off his fat little thighs. Not to mention his diaper rests on his upper thighs, so having raw skin there is NOT good. It's so NOT good for so many reasons. I'm freaking in my head a little bit. Maybe it will be okay. Maybe it will be okay.

Please pray.

87 comments:

Anonymous said...

Patrice....praying and praying and praying for sweet Jonah.

Michelle in Va said...

Praying for Jonah and you to have peace of mind. You are doing a great job with that handsome little fella. Keep it up. Praying daily for your family.

libby @ ninesandquines said...

patrice, i'm praying for you that he does not get an infection and that he doesn't get more sores from his procedures today...but i have to admit....it's just after 11 and i can't believe, on a monday no less, that you've been through all of that before noon!

Heather said...

I will definitely be praying that today does not cause blisters for him and that God gives you & Matt insight into any subtle signs that Jonah has an infection.

Phoenix's Mom said...

Praying for sweet Jonah and for mom and dad!

Marisa said...

Miss Patrice, you are his mama and you are certainly sufficient. I think guilt is one of Satan's favorite tools. Jonah is blessed to have parents that care so incredibly much for him. Praying for you and your family...today especially.

lifelaughsandlove said...

Saying lots of prayers for Jonah (and for your peace of mind). Don't beat yourself up about things. I feel like whenever I go to the Dr's office my mind goes blank, and I don't say what I need to say and I allow myself to be pushed around by the nurses. It's a learning process and next time you will be better prepared. You're doing a great job and Jonah is so lucky to have you for a mom!

~Amy

Jessica K. said...

praying and praying and praying for Jonah and also for you guys!

jennifer said...

my heart swelled with such huge understanding for the appointment you had. i've been there with my mom before. i've seen her cry in the car with frustration on the way home for how she would replay stuff in her head - wishing she would have thought to do, say, react to a nurse or doctor or procedure differently. hang in. this stuff is really hard to deal with, constantly on the fly like you are. different folks, different attitudes, and all the while trying to be respectful of the fact that they did go to medical school and all... remember you are the absolute best mom and advocate jonah has - and you are excelling at it. we'll be praying for jonah and for you.

Elizabeth said...

Oh, Patrice, we will be praying...but, you are not alone. I had moments that I felt bad for in my preemie's history, but we just had to be more aggressive the next time. We had things happen that caused him hives and rashes and he never blamed me...love from VA

justcindy2 said...

Patrice ~ Breathe in the Holy Spirit. You ARE Jonah's advocate and an awesome one at that. Every parent has something that they would change in hindsight. EVERY ONE OF US! God is there to hold you through this. Rest in the knowledge that you were given this precious child for a reason. You are the best mommy for him, handpicked by Him.

Mary Ellen said...

I will be praying for those specific areas and that they wont blister. It is so hard to know what and what not to say when you are with the nurses and doctors. I know that I have made several nurses and doctors upset with me for being so stubborn about what they I will and will not let them do. You ARE doing a good job and you cant beat yourself up for this. Praying for you as well :-)

Coco said...

Patrice,
When I was in Lamaz with my first I will never forget the instructor adamtly saying, "you are your childs only advocate. No one will ever care about them as much as you!" Little did I know how many times that would run through my head at times I was afraid to speak up! Our first wound up being born with multiple, severe food allergies. It gave me the strength I guess to speak up which I normally wouldn't do. Jonah is only 4 months old - you will get more knowledgeable and vocal with time! He will never remember this time, which I think is God's way of protecting our children from their parent's learning curve! Don't beat yourself up, you are learning about all of this as you go along! You are doing a wonderful job of caring and advocating for Jonah! You are going through a lot - cut yourself some slack and know that Jonah loves you no matter what! Telling the nurse how you want blood drawn will eventually become second nature. I know I'm rambling a bit, but I just want you to know that you are doing great! REALLY. It takes time to get the hang of being a parent let alone all the extra you have on your plate! Don't, for one second, let Satan convince you that you let Jonah down! You haven't! Just love him and the rest will come in time...

Staci said...

Praying. You are doing a great job with Jonah and his care. Perhaps it was the nurse who should have been better educated about EB! Next time you'll tell them how to do it and if they have a problem with it you could kindly request someone else who will respect your wishes. It's hard when you are dealing with medical professionals to speak up and against something they have said because you feel like they would know better than you. However, NO ONE knows your child better than you :) Keep up the good work Mama!

Sunny said...

patrice, not sure if you ahve considered supplementing jonah to aid in healing, but I am including a link from generation rescue about vitamin C supplementation after shots. Jonah is unfortunately at greater risk of reaction due to immuno-compromise, and possible infection. Vit C. can help with detox. If you can avoid tylenol, try. Acetaminophen reduces the body's ability to detox and should not be given after vaccines. Anyway--here's the link:
http://www.generationrescue.org/vaccines.html

email me if you want more inf: sunshinebabies3@yahoo.com

Sharon said...

Patric, I'm lifting your sweet boy up in prayer!!

Anonymous said...

Always praying for sweet little Jonah.

Anonymous said...

I will pray, but I would also recommend that IF, heaven forbid, any of what they did results in big blisters, that you take him right back in there and show them exactly what their actions did to your son. I suspect that ignorance can lead to continuing to things as they normally do when they don't really understand exactly what the consequences can be. It makes no sense at all that they would "have" to rub and rub and rub the spots where they gave him his shots. What for, exactly? And keep in mind that you are on a STEEP learning curve here, so cut yourself some slack. You'll know next time to speak up. Don't be afraid to do so either. Basically, if someone is doing something that you know could possibly cause him blisters, make them STOP until you are *convinced* it is absolutely necessary. Nothing they were doing was a matter of life and death, so it's not like making them explain things to you would be a problem time wise.

Jane said...

Patrice, I kept up while on vacation via Leigh, and saw the pictures you posted, Jonah is really growing and such a cutie. So glad he got a good report today, but will be praying for the specific requests you made. I think you should ask your doctor to red flag Jonah's chart to make anyone that is working with him aware of his skin problem. All of that sounded completely unnecessary to me. Hang in there and don't feel guilty, you and Matt are doing a wonderful job.

Lorraine-bo said...

Praying for Jonah ... and for you!

Anonymous said...

Don't beat yourself up. You couldn't have expected this. Don't be afraid to speak up, though. Remember that most doctor's offices have RN or LPN's with additional certification in giving shots. That's plenty of training for what they do, but not for special cases like Jonah. You already have far more education in caring for him than they do.

Also, they make velcro tourniquets - it would still put pressure on his skin but wouldn't pull quite as much (since they don't have to over-stretch them to tie them). I bet you could get the med supply place to order one for you. You could put it in a doc bag/first aid kit of supplies to take with you to doctor's appointments.

Jonah is a handsome young lad. Thank you for sharing his story with us. :)

Anonymous said...

Praying for you all. I'm having faith that everything will turn out ok.

Ebeling Family said...

Hey, Patrice!
Sorry I haven't commented in a while! I see you've been doing some pretty cool stuff (like going for a walk~ thats TOTALLY exciting! ! !)
I'll be praying specifically for Jonah to have no blisters from the trauma done to his skin.. and also that the medical people who work with him are a little more sensitive to his condition~
and, finally, praying for you to have peace at heart.

~em

1 Peter 5:6-7
"Humble yourselves, therefore, under God's mighty hand, that he may lift you up in due time. Cast all your anxiety on him because he cares for you."

Katie said...

Patrice,

We'll definitely be praying for sweet Jonah. I don't know if you have joined any EB groups, but I have found those to be the most helpful with blood draws, etc. Before we had Ella's blood taken for her genetic testing I consulted with other moms on what to do and they were the ones who told me to bring extra transfer. I never would have thought of it on my own. Hindsight is 20/20, but this might be helpful for the future.

Also, on the infection, look for green. Not a muted green...bright green. Everyone would say this to me and I had no idea what they were talking about until one day I saw it...bright green. You'll know it when you see it.

Katie

Sewconsult said...

My heart just skipped a beat when you described the nurse & the procedure. The DOCTOR should have prepared the nurse for a more cautious approach. Prayers are being said for Jonah & his parents. Prayers for healing, calmness & stamina to go the distance.

Tricia said...

I will pray. And realize you are a good mom. It is hard to know when the medical professionals know better than you and when they don't. God bless.

The House of Garcia said...

The kids and I are praying really hard he does not blister. How sad the professionals didn't know themselves to at least put a cloth or something on his arm. Oh and I will tell you that they do NOT need to "rub" the shot spots. Simple range of motion will do the same thing. They are just trying to prevent knots in his legs where they meds went in.
It's so hard advocating for our kids sometimes. Please don't blame yourself. Next time you will remember and can "educate" the person doing the blood draw and shots. We are the professionals when it comes to our kids! :D
Many Blessings and soft huggles.

"The Weavers" said...

You are a wonderul mommy!I know exactly what you mean,about not speaking up when at the doctors office sometimes.You assume they know what they are doing and that what they are doing is necessary to get the job done.When I've learned recently with my second child some of the things they do are just to get the job done faster.I will pray for Jonahs little thighs,and that he will not have any blisters.Bless him.I hate when they put those things on them before drawing blood,my little one has sensitive skin,it usually always irritates her.I can't imagine what it does to little Jonah's skin.Try not to worry to much,I know it's hard,as a mommy I think it just comes natural!I will be praying for God to give you peace,and for God to to soothe sweet Jonah's skin.He is just absolutely adorable!!God Bless!

Keely said...

As a new parent we all have moments where we think we could have made better decisions about our baby's medical care. Sometimes things come at you so fast, there's no time to think twice. Don't take it so hard. You're doing the best you can and it's hard to second guess doctors or nurses when you're a new parent.

Believe me, your medical/parental instict will come in time. For me, after my first son got to a certain age (I think he was about 8-9 mo old) & I built up my parenting confidence , I finally felt like I could stand on my own two feet and call the shots.

Do the best you can with the knowledge you have and learn from past decisions. That's all you can do as a parent. : )

Hoosiermama said...

praying that little Jonah would have no ill effects from his rough treatment at the doctors office. Also praying for your protection from the one who accuses. Don't let him make you feel bad, God gave Jonah to you because He knew you would take wonderful care of him. Ask God to give you the boldness you need to protect Jonah, He won't let you down.

RLR said...

I'm with sewconsult and Staci - the doctor/nurses should have been more prepared or told you what was coming beforehand so you could weigh in.... So sorry that you had to go through this - but know that we ALL have mommy guilt in one form or another.
I'll continue to pray for your family - and especially for your specific requests this week.

Ma Ledford said...

Sweet Patrice -
You are an awesome mom and advocate for your sweet son! Do not let the Deceiver get a hold of your thoughts. Praying for Jonah as well as protection over your thoughts.

Baby Bird said...

I am praying right now and will throughout the next several days!
How did your Rumba Dance thingy go?
Rest in Him...Father will be with you and Jonut:)
Love, Aimee

Heather said...

Praying with all my might for healing, strength and for your peace of mind and will be passing the word on. It will be okay Patrice. Please don't feel guilty; we've all felt that way at the doctor's office. God and time are on your side.

Shannon said...

Please DO NOT blame yourself. Those things happen...

If he does blister, I would return to that office for their education. Especially since you (and Jonah) are the ones who have to deal with the ramifications of their actions.

It's unacceptable to treat a child (or anyone) like the average patient, if they clearly need exceptional care and cautious treatment.

I'm actually a bit shocked a nurse would not automatically give Jonah extra care....ask you questions about what to do, etc.

K said...

It will be ok. I have felt the same way you have so many times. I hate taking my son to the doctor because so many times in the past I have felt like I wasn't a good enough advocate for him. So many times I have just taken the doctor/nurse at his/her word. But, take heart, God will keep Jonah safe. When we feel like we have fallen short as parents, we can rest assured that our Father will fill in the gap. You are the best advocate for Jonah you can be because you are talking with the Great Physician. We'll be praying with you.

Mira said...

As a first time parent to a 21 month old, there have been several times when I wish I had been more of an advocate for my daughter. After the fact I always think that I should have spoke up or said no to certain things. Being a new mom is about not only learning what is best for our child, but learning how to stand up for what we think (or know) is best. Don't beat yourself up for not speaking up. I find it difficult to do so, especially at the doctors office, because you expect that the professionals should know better. Just learn from it, and keep on going. That is really all we can do. I will be praying for peace of mind for you and for Jonah not to blister. God Bless!

dg darling said...

I'll be praying. Don't be hard on yourself though. You are an amazing Mom and you can't foresee everything. But for the recoerd, I'd be frustrated too! Oh I hope he doesn't blister...

mandi @ it's come to this said...

I'm praying!!

Caro said...

Praying hard for sweet Jonah and his freaked out mommy.

LucieP said...

Praying for you!
Don't beat yourself up....you didn't know and now you do!

Jonah is so lucky to have you!!

Peggi said...

Praying that Jonahs skin won't blister. If he does have trouble I would take him in to the doctor so they can see what they caused. I was wondering if DEBRA has handouts for proper shot and blood draw procedure of EB kids. It would be a good thing to have because it wouldn't be just you telling the nurse or doctor, but a foundation with much experience in the medical side of EB.

Take care and keep your chin up.

Anonymous said...

Patrice - I feel so sad for you and Jonah. I have 3 boys and can tell you that the range of "what they have to do" if very broad. If you feel so bold, you may want to consider calling back to the Dr. office and speaking to the office manager or Dr and explain what happen and ask if 1) they can label his chart for no elastic tourniquet for blood draws and no friction. 2) they can assign you a nurse or two that you could come see and educate about EB and build a relationship. Then only schedule when that nurse(s) is/are available. That way you are not educating over and over again at your regular Dr. office. Just a thought. You are his best earthly advocate and you are doing a wonderful job!

Danielle, Winston-Salem

Cindy McNeal said...

I am crying thinking how you must feel. You didn't know. Don't beat yourself up. I would tell all nurses in the future your feelings prior to shots or blood draws. I will pray for him not to get any sores or blisters from this appointment. Keep us informed. Thank you for the love you have for him. He is truly blessed to have you as his mommy.

Claire said...

Praying, sweetheart.

Cxx

LB said...

Oh my goodness, praying, praying! It makes me cry when I realize how helpless you must feel over these things! I will pray that no harm has been done. I hysterically cried when I left my son at daycare a few weeks ago (he's a few weeks younger than Jonah) and they called me because he was crying and they couldn't get him calmed down. I can't imagine having to go through what you do on a daily basis. Not only praying for Jonah, but for you too!

The Fabulous Baker Boys said...

Patrice sweet girl - you are a TERRIFIC mother and advocate for Jonah. Please have faith in yourself. We will continue to pray for you all.

Love and prayers
Stacey

Janel Waters said...

sending prayers your way! I am so sorry that you have had to go through all of that.

I HATE going to the Dr. specifically because of stories like yours. I have had my share of "bad experiences" when it comes to what I refer to as "lazy" medical professional. They learned it one way and paint every patient with the same brush - like robots going about their day. Use your voice and use it loudly if necessary.

I have gotten off of a procedure table because a lazy nurse insisted that the only way to do an IV was with tape. When she realized how serious I was - she got with the program and I helped walk her through the IV process for EB patients.

Sure they have had some extra schooling - big deal! they are still just people - people who constantly need reminded that every patient is NOT the same.

You are a wonderful mom and a perfect advocate for your son - let this be a learning experience, not a set back.

Please let us know how Jonah is doing!

janel

LA said...

Patrice, I'm praying for you and Jonah. IF and I hope not, he gets blisters from the rubbing, it would be a great opportunity for you to "teach" the doctor's office. Tell them in the nicest way you can, that Jonah must be handled differently than other children. I'm an educator and we have to make lots of accomodations for our students who have medical needs. They should be willing to learn in order to benefit Jonah and other children like him. I'm praying for no blisters though.

And the mother guilt thing is horrible. Don't beat yourself up; Jonah will love you no matter what!

Rebecca said...

Patrice,

Praying for Jonah - and for you!

You are a great advocate for Jonah, and you will learn more and more - you know your baby best, so trust that 'mama bear' instinct when you feel it - you can do it and Jonah is blessed to have you!

Hewett Happenings said...

Patrice, I will be praying for Jonah, as I already have been. I know this is repeating some of the above, but don't blame yourself. Yes, you are still learning. Next time you will be prepared and will be confident in what you tell the medical staff. Also, YES, the doctor should have notified her staff as to the special treatment Jonah's condition requires.

Hang in there, and NEVER feel quilty about questioning medical personnel.

Penny said...

Do NOT be hard on yourself. They are the Professionals--- you're the new mom. They should know better! Don't feel guilty and I WILL pray they didn't do damage to him. When my daughter had a blood disorder, nurse's could never get her IV in. I had to learn to insist that we would wait on her pediatrician to start her IV when he made his rounds, because he could get it in with just one or two sticks versus five and them still have to call him. You'll learn as you go who to ask for. Talk to your doctor about it and let her talk to them or do it herself. Doctors are perfectly capable of doing the "nurse's jobs" themselves. Request it! =)

kdliberty said...

I am sorry you ran into such an idiot at the Doctors office today.Next time make them put a sock under the tourniquet. Strange but true, a nice thick soft sock works best for preventing problems. (This staight from the mouth of a RN that draws blood regularly on very frail skinned elderly patients.) Praying for Jonah- KD

Anonymous said...

Praying that Jonah will not get bad blisters from the shot he had to get. May you have peace in Knowing that you are an amazing advocate for him. Sometimes there are things we have no control over and as you said you learn from the trials that occur. You are both wonderful parents to Jonah and I want you to know that. I know that God is watching over all of you and guiding you. May he continue to give you the wisdom that you need.
Praying and Believing!!
Kelly

Anonymous said...

Praying Patrice! Praying! We are praying! I know about having to learn the hard way. I really do. I think another time I would be sure to clear things with the doctor. They come in before shots, blood draws and all. Express your concerns and how YOU want to do it. Then have him/her explain to the staff how to do it. They will accept it from the professional better than you. This is important: standing up. YOU CAN do it. You really can. I believe in you. It will be okay but we will continue to storm the gates of heaven on your behalf. I am still in shock that he is ALREADY four months old! Way to go Jonah! Jennifer in Southeast, NC

Anonymous said...

Hey, me again. I just was reading MckMama's twitters about some new SUPER SOFT cloth diapers. The link (if I copied it down right!) is http://hyenacart.com/mandis

Something worth thinking about maybe. Hope it helps. Jennifer in Southeast, NC

Lauren said...

Hi There, I just came across your blog, and I wanted to say hi. I will keep Jonah and you guys in my prayers. Praying for a miracle.

Lauren
www.laurensblog.greenfamily.net

Foursons said...

Please know that I don't think (for whatever my opinion is worth)that you are a bad mom. You did speak up when the nurse was taking his blood, who are you to question a medical "expert"? Yes, now you know better- and next time you'll do better. But you can't fault yourself for information you did not have to begin with.

Praying for all of you.

Elle in Williamsburg said...

Prayers, and tears, for you both on what was such a difficult day. And I agree, if he blisters there, you should take him back in so they are made aware of the ramifications of what they did. They should be going above and beyond to educate all the staff who will have contact with Jonah- period. Ohhh, I pray he will not blister! And that he is doing ok from the shots themselves- sometimes little ones have a rough time with those- I hope your sweet family can feel all the love prayers directed your way!

shoutingforha said...

I am praying that sweet Jonah will be blister/sore free. If something does appear, I agree with all the others who suggested that you take him back to show the nurse the results.

Since EB is such a rare disease, you, along with all his other caregivers, are having to learn some of this stuff as you go. I'm sure that every day brings new revelation about how different situations and circumstances will effect Jonah. Cut yourself some slack.

God entrusted Jonah to you because He knew that you were the perfect woman for the job. From everything that you've shared, I think Jonah is incredibly blessed to have you as his Mom.

Anonymous said...

Jonah couldn't have asked for a better mom. You are doing a wonderful job and I admire you for all you do to be the best mom you can be. I pray very hard for your little one and think about him often. Keep your head up girl!

MelArcile said...

Patrice,
I've been reading your blog for quite a while now, and I've noticed one thing about you. Well, I've noticed lots of things about you, but I'd like to bring up just one: You are a fantastic mother and advocate for Jonah. Don't let today make you doubt that. That's just Satan in your head. God would not have blessed you with little Jonah if there was any doubt that you would be the absolute perfect Mama for him.
I will definitely be praying for little Jonah, that he doesn't blister and that he doesn't get infected. I will second another commenter that I read: should he blister from the excessive force they used on your fragile baby, you should either take pictures or take him back in. Personally, I'd go with the pictures as to not expose him to the germs in the doctor's office.
Remember: You are doing great! You are a fabulous Mama to Jonah and Gabe. Praying for you.

Cristi said...

I pray it wont get bad. If it does, I would bring him in to show first hand the nurse who did it. So next time they will have a visual as to why he needs things done differently.

lov said...

praying praying praying
please keep us updated!!!

Debbie,mother of two said...

Praying for Jonah and that the Lord keeps in from infection and that you have the insite on seeing things ahead of time. You do a wonderful job with Jonah and just learn from the experience and go from here with your knowledge. We will pray that no harm will be done to Jonah over this. Also, this could be sometime that education could be done to the nurse. Maybe now they will read up on EB and know more when other infants come in. Praying for you all. The Lord can take care of this and wipe any problems away. I will have that faith for you today.

Erin Edwards said...

Wow, just wow. ::hugs:: I have a book of pictures I have with me at all doctor's appointments where I can show what happens. Did you get an apology? I think I would call and talk to your pediatrician where it just doesn't happen again. Even someone that kind, especially who has been so involved in the care, should have called Debra before doing the blood draw IMHO, but that is hindsight. We can only do the best we know to do at the time.

I had a nightmare last night about Ethan being in school & him coming home with a bandaid on him. I am still mad and it was just a dream;) As for blood draws, do ya'll use coban & gauze? If you need it, keep it with you, even Baptist doesn't keep it on hand ::sigh:: If the blistering gets bad and you need me, let me know. I will be happy to help any way I can!

Anonymous said...

What a good idea. How dumb I felt. Take pictures to show them! Make sure to have the "date" feature on with the camera so that you have "proof" that it was taken the day after the appointment. Way to go, Patrice! Thinking of ways to improve your advocacy. That is thinking and the answer to prayers too. Still praying (why do you think I came back again tonight!?). Jennifer in Southeast, NC

Nora Lee said...

Thank you for letting us all know specifically what to pray for little Jonah. Lifting him up in prayer.

Anonymous said...

praying, praying, praying for a miracle for Jonah.

lifelaughsandlove said...

I've been praying for Jonah every time he has come to my mind today. I'm praying for that miracle! Thanks for the update!

~Amy

Toni :O) said...

Praying as always for you sweet boy. You are the best advocate he has and he's in the best possible hands...you are doing so good, keep patting yourself on the back because it's really hard and many of us have never walked in your shoes, but we know given how the blisters look, that's it is super hard. You're doing the very best you can and Jonah is one lucky little guy. Thanks for the updates and I'll pray it doesn't get too bad for the cutie boy. Hugs and love for support from Michigan as usual!

mrs. mari said...

keeping jonah and you in prayer. you are a great mom and jonah is blessed to have you both as his parents. praying that you find peace of mind.

Laura A said...

Hi Patrice-

I'm so sorry you had to go through this, and that Jonah had to go through extra pain- he certainly doesn't need it!

I'll pray that God will protect his little body in those specific areas, and as always, will pray for healing.

Love from TX,
Laura

Anonymous said...

Strange, but you&Jonah have also been called on to be teachers. Just another helping on your already full plate.
I pray his experience does no harm.
Get some sleep.
Prayers,
2shoes

Marie said...

Unfortunately it really is a learning curve - you had no idea they were going to use a tourniquet or rub the site so don't beat yourself up. Whether he blisters or not this time, you've learned a valuable lesson and you will be prepared next time to prewarn medical staff about Jonah's skin. EB is so rare that even professionals might not know about it, so yes you will have to be the expert! You'll know next time to tell them in advance about what can and cannot be done with Jonut. And hopefully he won't get any serious blisters from this time.

I saw someone gave a link from Generation Rescue - be very, very wary of that site. It is connected with Jenny McCarthy who advocates some very dangerous practices and ideas.

Anonymous said...

Praying. Please do let us know. Hopefully there will be NO blisters at all. There is one good thing from this, though--it will never happen again, because you have found, as you say, that you are the expert! I definitely understand what you mean--I remember times when I deferred to opinions of people who I thought knew better than I when it came to my own kids--and just like you, I realized that I was able to speak up for them and people would listen. There's no doubt that your nurse or any health care professional would never want to carelessly hurt a precious little boy, so they should never mind being given some information about something they don't know. You are an awesome Mom!
Karen in Clemmons

Sara said...

Bless his heart, your heart...stopping to pray right now!
Much love~
Sara, Kingwood TX

angela jones said...

Patrice--
last summer i had twins and one of my babies had the same rare genetic nightmare as Jonah--JEB--non herlitz--
I just want to let you know--I'm shocked at the pictures of Jonah-yeah he has blisters on his face--but he looks awesome--he's smiling and has sooo much life in his beutiful blue eyes--
My baby Jacob honestly didnt have a chance because of the lack of proper care in the begining--i was sent home with nothing but vasaline gauze and a website address to DEBRA--i had to go online and educate myself night and day--and within weeks--like you said the parents become the EB specialist--I became that crazy Mom--who would stand infront of my son--and go over the rules--and educate any medical staff--from Doctors to the nurse anyone who was coming in contact with my baby--I would just tell them i understand this hospital or doctors office is your turf--but Jacob he's my turf--and if you cause him a open wound by handling him incorrectly it could be fatal--so there's no room for error---and honestly for the majority of the time i scared the crap out of them and they backed up a respected the disease and listened to what i had to say--
jacob stayed in the ICU for a large part of his short life--and i refused to allow them to do anything that would casue more damage to his skin--and there wasnt a single procedure that was comprimised by it--they just had to get very creative about the way they did things and we all worked togeather to brain storm and wing it--
its hard to be in your shoes--i know trust me--you need help and you want it--but its so hard to trust someone with such a precious fragile part of you--
we had a RN that came out to our house once a week--and she worked with me to learn how to take care of Jacob--we did it togeather as a team--she wouldnt do a single thing with out asking my opionion on it first--
im sorry for rambling--but i just felt very connected when i read your last post--
take care and give that beutiful blue eyed baby boy--a sweet kiss for me--your doing wondeful--dont doubt yourself--if you dont think somethings a good idea-let everyone know it--and keep telling them until they listen--and if they dont listen--show them some clinical photos--that usually does it!

angela jones said...

sorry its me again--but another think that was helpful for me--except in a emergency setting--was to go into the drs office--and tell them that you want to discuss in detail what they planned on doing--if there not okay with that-then i would walk...
if a nurse or medical staff ever caused injury to jacob--they never ever got a second chance-trust me I was in some bad situations--and had some very angry nurses insulted that i was telling them how to do there job--i just brushed my shoulders off held my head up high--looked in my sons eyes--and told them to not come back in his room- i was also none to bring my cellphone in the room and have the EB nurse educator talk directly to the doctor--on speaker phone--worked pretty well......

Anonymous said...

Praying for sweet boy, and you and Matt, Patrice.
Lord, heal Jonah. Give Matt and Patrice peace and wisdom, guidance and help. Give Matt and Patrice confidence and boldness to speak out for Jonah when need be.
Lord, thank you for blessing this earth with beautiful Jonah. He is so loved. Let his light shine everywhere he goes. I pray he will never be in pain, and that you would do all kinds of creative miracles for him, that he would be a walking, talking, full of life living testimony of your greatness. In Jesus mighty name I pray, Amen
ps- Patrice you are doing an awesome job- and you need to forgive yourself for what happened at the shots. Its done and over and carrying guilt will not help you. Cast all your cares on Jesus, and us- we will throw them up to our good Lord for you.
God Bless, Carlee

katrynka said...

Hi,

I have been a pediatric physical therapist for the past 23 years. I always try to support parents in the learning curve of advocating for their child. As someone else mentioned, thankfully most situations are not life and death, so you have the right (and the time) to stop things and explore if there is a better way. Although the doctors and nurses are experts in what they do, you are an expert as well, an expert on Jonah.

One of the first patients that I specifically recall from my first year of being a PT is a little girl who had EB. As it was 23 years ago, medical knowledge was not as good then on this disorder. She was hospitalized for quite a long time, maybe more than a year (I think there were also caregiver issues.)Little "M" had a trach, and all sorts of bandages, a G tube etc. But she was a feisty little girl!! We would work on standing and walking on her own. She would get really angry at me, and she began to have a behavior of popping her trach out with her finger! The first time it set me back a bit, but after that I was prepared, and I would pop it right back, and therapy would continue. She did learn to walk, and was discharged home!

Anyway, keep being Jonah's stanchest advocate!!

Heather from Ontario Canada said...

Patrice I'm praying for little Jonah too. I also have a few questions. is it possible to give him some extra pain meds before the blisters break out ...if they do...to help alieviate the pain? Did you take some before pictures to show the comparison to the nursing staff?

Robin said...

Good morning. Just checking in on our sweet baby boy to see if there has been any change to his skin. I prayed specifically for no blisters last night and that God would comfort Jonah and ease your worries.
I love your heart Patrice, and hope that today is filled with peace for you.
Robin in TX

Cristin said...

Patrice, As I was reading this post my heart just felt for you. You said today that you didn't feel like you were a good enough advocate for Jonah today at the doctors office. As a mother, I completely understand the want and need to protect your child. However, you are a wonderful advocate for Jonah and you should never think you aren't. You have so much to deal with and you handle everything like a champ. Anyone who reads your blog knows how strong you are and everything you have to overcome. You are so brave and I am so proud of you!!!

My prayers go up for Jonah and for you and Matt! I pray that God gives Jonah healing and you and Matt strength!

Jenny J in CA said...

Praying for Jonah's precious skin, and that you will feel God wrapping Himself around you in a hug. You are such an amazing mother- Jonah couldn't be luckier and God couldn't be more pleased.

On a totally random note, you mentioned in another post your Spanish skills. Have you thought about speaking Spanish to Jonah? Since he will likely fall behind in physical milestones due to discomfort, he may jump ahead in some other milestones. If you were to speak primarily to him in Spanish, he could literally learn Spanish and English at the same time which would be an amazing skill for him to have. I'm sure there are books? websites? to offers ways to do this (we used to live in Germany, and there many, many kids are raised to be bilingual). It was just a thought that would be something extra special for you to teach him as well as allowing you to continue to speak it so you don't lose your skills while you get to stay home with him.

American History said...

Keeping you and Jonah in my prayers. I lit a candle for you at the Church of the Holy Sepulcher thanks to http://holylandprayer.com God bless.

Monkey's Momma said...

Honey, You are doing a great job and don't let anyone tell you otherwise! I have been a nurse for 16 years and I can tell you that tourniquets are rough on fragile skin. Ask your nurse or doctor what else could be used instead of that device. I am sure there is an alternative. I have used a blood pressure cuff inflated before, but I am not sure if you could use one on a baby (I have never done PEDS). I know it works on 90 year olds with VERY thin, fragile skin that tears easily.

Also, after an injection, a quick little massage of the skin at the injection site with the alcohol pad is all that is needed (5 seconds or so).

I hope this helps. Do not be afraid to stand up to nurses who are taking care of your boy. If they are a professional, they will appreciate anything you can tell them that would make their job easier and put less stress on you. I know I would.