Thursday, March 5, 2009

jonah - thursday, march 5th

Jonah is looking great! We just went back, and he's actually almost smiling.


His white blood cell count is still low, lower than yesterday. That's disconcerting to say the least, but hopefully his added nutrition will help him heal more and resist infection. They talked to us about possibly getting to hold him soon, but Dr. Furlong says she'd like to see his WBC count going up before we hold him. We are TOTALLY okay with that. There's no way I'd hold him if it meant we might be risking infection. It's funny, but after missing out on so much after we lost Gabe, I'm thankful for every wiggle, squeek, or facial expression. For now, that's so much more than enough. We don't take a single bit of it for granted. Don't get me wrong though - as soon as they say we can hold him, people better get out of the way. I won't be responsible for my actions.


He's had a rough day so far, but it hasn't seemed to phase him too much. He started the day getting his TP tube in followed by a biopsy, followed by a dressing change. Redoing all the bandages really takes a long time. I felt bad that he had to go through so much, but really he just seems drugged and content more than anything else. We haven't tried another bottle yet since he was having all that done and has been kind of out of it ever since. I'm anxious to try again since he's done pretty well the last two times.


Specific prayer requests right now:
- that he will eat, eat, eat on his own so we can get that nasty tube outta there
- that the tube will ONLY help, and not hurt
- that his WBC count will go up and he will resist whatever infection is trying to get him
- that his pain management and dressing changes will continue to go well and that he'll continue to be strong


The photographer from the Journal was just here. When the he asked Dr. Furlong how Jonah was doing, she simply responded, "He's still very sick." It made me so sad. She is telling the truth - he still is very, very sick... deep in the woods. Sometimes I get it in my head that it's just some blisters on his skin. How I wish that were true. Although we remain hopeful, sometimes the reality of what's going on really slaps us in the face. I just feel like I can't bury another child. I don't care what kind of care he needs, how much it costs, or how hard it is. We just want him to live for a long, long, long time. We want to see his kids have kids.


Lord, let Jonah live so that he may praise you.

41 comments:

avbernat said...

I am praying and praying that you will NEVER have to bury another child. That thought is far from my mind even with Jonah's condition. He's very very sick - true, yes reality. But he is here and he is treatable. Continue to be the wonderful mother that you are. Continue to love on Jonah and keep having the faith that he will victoriously triumph over this horrible disease.

Baby Jonah, you are constantly in my prayers and in my thoughts. It pains me to see you suffering, but know that you ARE A FIGHTER! We all believe in you and believe in God that he will give you the strength to overcome this. We all love you and we cannot wait for the day that mommy and daddy can hold you in their arms and take you home... where you belong.

Chris Hilton said...

In the light of this post I thought that everyone including Matt and Patrice might appreciate knowing who the physician consulting from Vanderbilt is.

Who is Dr. Jo-David Fine, MD, MPH

Dr. Fine is a Professor at Vanderbilt University School of Medicine. He serves as Professor of Medicine in the Department of Dermatology and also as a Professor in the Department of Pediatrics. He is the Principal Investigator and Project Head of the National Epidermolysis Bullosa Registry (1986-present).

Dr. Fine is board certified in Internal Medicine, Dermatology and Immunodermatology. He is a graduate of Yale, the University Of Kentucky and the University of North Carolina. He completed his post graduate training at Duke University Medical Center, Massachusetts General Hospital and Harvard Medical School, and the Lahey Clinic Foundation. He completed his Fellowship in Immunodermatology at the National Cancer Institute. Dr. Fine also completed residencies and fellowships at the University of Virginia, Harvard Medical School and Johns Hopkins Hospital.

Dr. Fine's expertise is in Epidermolysis Bullosa, other bullous diseases, immunodermatology, immunopathology of the skin, and clinical epidemiology. One of his greatest accomplishments is that he has been the Project Head of the National EB Registry, the largest cohort of EB patients in the world. The primary goals of the Registry were to characterize the different forms of inherited EB existing within the United States, to determine the risks of specific clinical outcomes within these types, and to promote EB research worldwide.

Dr. Fine serves on the Board of Trustees and the Scientific Advisory Board of DebRA of America. He is an active participant of the Medical and Scientific Advisory Panel of the DebRA International Research Review Board.

Fine lauded by U.K. physicians association

5/18/2007 - Jo-David Fine, M.D., professor of Medicine (Dermatology), has been elected to a fellowship in the Royal College of Physicians.

The Royal College of Physicians is the oldest medical association in the United Kingdom and one of the oldest in the world. It was established in 1518 by a royal charter of King Henry VIII, and seeks to set high education and training standards for physicians. It has more than 22,000 members and fellows worldwide.

Anonymous said...

Praying for your Baby Jonah. I have a three year "Gabe" and can't begin to imagine what your family is going thru. Our thoughts and prayers are with you continuously!

Katherine said...

Patrice, I think we all keep talking about Jonah being the fighter, but I forget what a fighter YOU are! You are inspiring me every day, both you and Matt ... and all of the family out in the waiting room. You are such great advocates for Jonah, such a strong mommy and daddy already, fighting with everything you've got to help him get better. Keep the faith, girl ... you're doing a great job.

p.s. Got sick of moderating all those comments, huh? :)

Kristie aka Mommy said...

We are continually praying for the Williams Family! Hope that he continues to get better, and that you can take him home soon. Just wondering if you all have noticed any new blisters popping up?? We'll be praying that he starts sucking those bottles down!! :)

Jolanthe said...

Praying for you all - and so excited to hear he is keeping down his bottles!! :) YEAH!!

Diana said...

I am a mom in Michigan and I just wanted you to know that I have thought and prayed for Jonah often in the last few days. I am confidant that our same Jesus who was raised from the dead, can heal your little man. My prayer for you is that when the enemy tries to creep in with fear and discouragement, that the the Lord's peace that passes all understanding will guard your heart and your mind. I am praying that you will be cuddling that sweet babe very soon.

Familia Alba said...

Patrice, you are such a corageous, faithful, inspiring woman. I admire you so much. Keep up your faith. Jonah will be fine. Thank you for sharing this experience with us. It gives me strenth and makes me wish to more fully follow Jesus Christ. I'm praying for brave Jonah too.
Love
Marta

Melissa said...

i am praing for your baby. i hope your baby feels better soon. love brenna

My 6 year old daughter has been quite touched by Jonah's story and she wanted to write you a note to let you know that she is praying for him. We are all still praying hard for you sweet baby.

Melissa :)
www.withasmile.wordpress.com

Likeursoperfect said...

I don't know if you have heard of this website, or if you have already been, but it is one that I think might help you a lot. http://debra.org/
It's made for the support of research on EB, and for the support of those living with it and their families.

Likeursoperfect said...

Sorry to keep bugging you with comments, but I don't have an email for you. Here is some more information that I got from this site that may help your "right this second" situation:

Prevention of Blisters

Handle gently: Avoid lifting babies or children from under the arms; instead, place one hand beneath the bottom and another beneath the head/neck to lift. A pillow, egg-crate (foam) pad or sheepskin may be used beneath the baby to prevent friction against the skin while lifting and holding.

Do not rub skin: Since blisters can be caused by friction, the skin should be patted rather than rubbed. Before blood tests or immunizations, the area can be cleansed by gently pressing or patting the alcohol pad against the skin.

Dress in loose-fitting clothes: Clothing that rubs the skin may cause blisters. Avoid or alter clothing with binding elastic. Avoid harsh buttons, snaps and zippers. Non-binding diapers or cloth diapers may be used. Elastic may be cut from the legs of disposable diapers to help minimize blistering.

Avoid excessive heat: Overheating tends to increase skin fragility. Maintain a moderate environmental temperature (including your car) and do not over-dress.

Do not use adhesives on the skin: Tape or band-aids should not be applied to the skin because they may cause blistering.

Lubricate the skin: Aquaphor or Vaseline will help decrease friction.

Pad Bony Prominences: Gauze sponges, secured by rolled gauze, may be used to pad elbows, heels and knees if infant get blisters from kicking against the sheet in the crib. Soft socks may be placed over lubricated hands and feet to prevent blisters.

Blister Care and Prevention of Infection

Wash hands before administering skin care: Hand washing is the most effective measure to control infection.

Do not remove clothing or dressings that are stuck to the skin: Materials that are stuck to the skin should be soaked until they can be removed easily. This can be done at bath time (in the tub) or by applying room temperature water or a soaked compress directly to the bandage.

Cleanse skin daily: Skin may be cleaned with a very mild soap such as Dove.

Drain blisters: Blisters tend to increase in size if they are allowed to remain intact. For this reason, most blisters should be drained when they are about the size of a dime or if they appear tense. Sterile needles or lancets may be used to puncture the side of the blister roof. A tiny pinhole may re-seal and allow the blister to refill, so take care to open the blister roof adequately. The blister roof should be left intact to facilitate healing and comfort. A mild antibiotic ointment may be applied to the area to aid in the prevention of infection.

Apply topical antibiotics to lesion: Mild, over-the-counter antibiotics (Polysporin, Bacitracin) are effective in preventing infection and may be rotated every month or two to discourage bacterial resistance. Bactoban, like all antibiotics, should be used only when infection is present. (signs of infection include increased redness, swelling, pain and warmth). Prolonged use of Bactroban has been associated with the development of resistant Staph infections.

Apply non-adherent dressings: After application of topical antibiotics, a non-stick dressing such as Mepitel, Vaseline Gauze or Telfa should be applied to denuded or unprotected areas. Next, rolled gauze is wrapped around the non-adherent dressing and is then secured with a tubular dressing retainer. The dressing retainer will prevent the occurrence of tape accidents.

Change dressing daily: Daily dressing changes are recommended and can be coordinated with a bath or cleansing of the skin. Some contact layer dressings, such as Mepitel (Molnlycke Health Care) may be left in place for several days, although the secondary or outer dressing should be changed and the wound assessed daily.

Nutrition

While"breast is best" for most babies, breast feeding presents a special challenge for infants with EB. Infants with blisters and lesions in the mouth may have difficulty nursing or sucking from a regular baby bottle. Mothers may decide to provide expressed breast milk to their infants. The Haberman feeder (http://www.medela.com) is a cleft palate nipple which incorporates a valve that facilitates easy delivery of the formula without the need to suck hard. This works well for babies with a fragile oral mucosa.

* Infant mouth care may include gentle cleansing with a spongy toothette.
* A dry nipple will stick to lips and blistered areas, causing more damage. You may moisten the nipple with water or Vaseline prior to feeding.

Keep Growth Charts: It is important to chart the growth of an infant/child with EB. Such charts provide essential information for evaluating the adequacy of the diet. A nutritionist should be consulted about the nutritional status of an infant with EB if there are questions or concerns about weight gain. Many infants with EB require fortified formula to meet their increased caloric and protein needs.

Nurturing

It is not unusual for nursing staff and parents to avoid handling a baby with EB, with the hopes of minimizing blisters. Learning the correct way to hold the baby will instill confidence in the caregivers and allow the baby to receive the emotional support and closeness he/she needs. It's a good idea to use the crib as a "Safe Place." All dressing changes and other unpleasant activities should be performed at places other than the crib (for example, on the changing table). The infant should learn to connect the crib with comfort.

Continuity of Care

Continuity of care by the nursing staff and other care-givers is essential.

You may contact Debra of America with questions or concerns:

(866) 332-7276
(nurse@debra.org)
(www.debra.org)

Mom in Texas said...

He is beautiful. I am praying for your family.

Megan said...

Still praying. Thank you for the updates. I'm so glad he did so well with both bottles this morning. What praise. Stay strong!

Baby Bird said...

Sweet Patrice...lots of good and not so good today...Praying that God will be with you and give you your hearts desire! He still has your precious Jonah in His loving arms!
May you and Matt be blessed with His overwhelming love, care and sweet peaceful rest!
Much Love, Aimee

Goldylocks said...

Coninued prayers for you and baby Jonah...what a sweet, beautiful, strong, baby boy he is.

Watts Family said...

Jonah is a Champ...such a fighter! I love the headband. We will continue to pray for him in Texas...and as they say "Everything is Bigger in Texas" So BIG prayers heading your way. GO TEAM JONAH!!!

Many Blessings,
Amanda

lesliemarie said...

Just found your blog from Steph "Livin in a Boys World." I'll continue to follow and pray for you! Hang in there, little momma...God is GREAT! (even when life isn't always good)

Tricia Belfonti said...

As one mom to another who have both dealt with "sick" babies and I hate that term - if the positive makes you feel good then you need to focus on the positive. RUN with it! I truly believe with all my heart that a positive mama definitely helps babies to recover quicker. Jonah is sick but he's ALIVE!

A little story for you: my daughter was born with multiple heart defects. We're HUGE Disney fans. So every day and night when she was in the hospital recovering from surgery, I would whisper in her ear "we're going to get you better and we're going to take you to Disney World. We're going to ride Small World and meet the princesses and Mickey Mouse and it's going to be amazing." That was my promise to her - to get her healthy enough to go to Disney.

And today, she's 4 1/2 years old. She has had three heart surgeries but she's amazing. The most amazing child I've ever met. And she's been to Disney 3 times so far ;).

focus on the positive and let the doctors worry. They'll tell you when you need to worry.

My prayers are with you all that Jonah gets to do all the wonderful things children do: first smile, first laugh, first steps, kindergarten screening oh, wait - that was my first for today ;)

Take care and God Bless you all!!!!

Jane said...

Patrice, it is just awesome to see the outpouring of love and care for Jonah, you and Matt. I think everyone all over the world is going to know adorable little Jonah. I know you must be overwhelmed with the prayer group and all the comments you are getting. It is wonderful people are trying to be so helpful and caring. I know there have been ups and downs today, but concentrate on the ups. Being in NICU with a sick baby is not a good experience, one of my twin granddaughters was in there for over 30 days, she weighed a little over 2 lbs and had heart surgery. The twins will be 8 this month. Just know Jonah is in good hands and what a blessing those units are availble. You have blessed us all in sharing Jonah's life and I hope you can for many years to come. I am and will continue to keep all of you in my prayers, and will include your prayer requests. Praying Jonah's feedings continue to improve. May Gob Bless

Jenny said...

matt and patrice.
i admire your strength. you both and jonah have been and will continue to be in my thoughts.
jenny snyder

Patti said...

I found your blog through Kelly's Korner. We are praying and believing, God is faithful!

natalie said...

Patrice (and Matt),

I found your blog through Kelly's Korner. I've been back every day to check on precious angel Jonah and I even joined the Facebook prayer team for Jonah.

Your comment "I just don't think I can bury another child." struck a chord deep, deep inside me. While I haven't buried a child, we've suffered two devastating miscarriages. Your faith is such a tremendous inspiration. God is working miracles in your life and in Jonah's life. He is using you, in the midst of this trial, to reach people and encourage us to reach to Him. Your life story is turning people to God. What an amazing testimony of God's majesty!

Please know that we, strangers to you on this earth, are lifting you up to our Father. We are praying for Jonah's healing so that he goes home with you so that he can forever praise the one whoe healed him.

Love in Christ,
Natalie

Stephanie said...

Put some pictures of my boys praying on my blog and on your facebook group. Jesus said to NEVER GIVE UP IN PRAYER so we won't.
Boldly approaching the throne of grace-
Stephanie in TN

Anonymous said...

Sounds like Jonah had a full day...the little guy has been through a lot. I pray that his WBC count improves and he will show everyone that he can drain his bottle. Jonah looks really good in the pictures you posted earlier. Stay strong for your little tough guy. Jonah is a beautiful fighter.

Gail
Annapolis, MD

Tabatha said...

I am praying for your family and that precious boy! I did a blog post asking my readers to pray for Jonah and also added your button to my sidebar. Your family is on my mind!

Anonymous said...

Praying for you everyday. When I read your post today, Jerimiah 29:11 came to mind.

"For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm, plans to give you hope and a future."

God has great plans for Jonah.

Jennifer

Janel Waters said...

Sweet Baby Jonah! You have had a busy day! Patrice and Matt - my heart goes out to you every time I read your posts.

Your family is amazing and I admire your strength and your faith.

Definately focus on the positives of today and every day.

As always - feel free to contact me with any questions about EB - I'm always here for you and your family - I will continue to pray for you daily!

Brandi said...

Oh darlin! I can only imagine what you are going through. You and your little one are in my prayers every time I think of you. Which is often. We are praying for that count to come up! For you to get to hold your baby and feel his weight in your arms! For the tube to help him gain some weight! And that he turns into a little suckling pig and latches onto a bottle. I read a bible verse today and wanted to share it with you
Psalm 30:2-O' Lord my God, I cried to you for help, and you have healed me.

We are crying to God for help on Jonah's behalf!

Charity said...

Jonah looks beautiful...what a precious boy you have. You are continually in our prayers as we lift Jonah up several times a day. Thank you for keeping us posted.

May the Lord's peace penetrate your life.

Kelli said...

We join you in prayer for your precious Jonah!!!

Anonymous said...

I absolutely love this child. He gets more beautiful every time you post a picture! I am very proud of you for posting your praises to our Lord Jesus. I have never been in your situation but I will look to you as a role model in difficult circumstances. I give credit to God for giving you that strength but you are being obedient with praise and that is noteworthy. God does not promise us easy circumstances but to honor Him always will have eternal rewards for you. May the infinite grace of Christ Jesus sustain you.

Praying in Missouri, -Leslie

Anonymous said...

Praise God for the blessings of today...eating, still resisting infection and for showing his parents that he is strong. God provides, indeed.

Stephanie said...

Praying,praying,praying for you and Jonah!

Julie said...

What a mother you are, Patrice! I'm praying for you tonight.

Michelle M. said...

Praying for Jonah, that his feeding tube will get that food in his tummy that he needs so that he can eventually go off of it and especially that his counts will go up and fight anything that comes his way. He is a tough little guy! He is so blessed to have you two as parents!

Anonymous said...

Patrice & Matt,
Just wanted you to know we continue to follow Jonah's progress, and are so glad to see that things have been going pretty well. He had a big day, but continue to believe in his resilience despite his fragility. The added nutrition will help him tremendously.

You exhibit great grace despite your anguish - God certainly chose very special parents for sweet Jonah! We are with you in spirit and hold your family close in our prayers and thoughts.

Adrienne & Pete Provost
EB Parents in Palatine, IL

Merri L said...

Hi, you don't know me - I saw your link on a friend's blog. I have been so touched by your strong faith and your sweet babies. I wanted you to know that I have been praying for Jonah and will continue to do so. He is a beautiful baby and I know you must be such proud parents. I will be praying for the Lord to cover all three of you His peace, comfort, joy, wisdom, and strength; wisdom and discernment for the doctors; and healing for sweet little Jonah, from the top of his head to the tips of his toes. Blessings to you and your family.

Megan @ Hold it Up to the Light said...

Thanks for letting us know what we can pray for specifically....you are doing awesome Mama! I hope you are getting some rest yourself (and food, too)!!!

Know that I am praying and will be checking in every day!!!

Sara said...

Its nice to see softer gauze on him too:)

Hopefully the feeding tube will be temp. and he will begin to eat more on his own.

Dr. Fine is a wonderful Doctor. I meet him at the EB conference in 2006. I hope you will be able to meet him some day as well.

Sara
www.garrettshouse.org

karina said...

Patrice, I look forward to your updates each day. I read them after my family is in bed and pray and praise right along with you as I read.

I hope you will see the TP tube, not as a set back, but as a means to get more nutrition into Jonah (especially breast milk with all it's wonderful antibodies) so that he will get strong enough not to need the tube. It's just a boost. I would also recommend that you dribble some on his sores directly, breastmilk has wonderful healing qualities!

He's such an adorable little man!

blessings, Karina :o)

Anonymous said...

I read your story in the Winston-Salem Journal Sunday and I was amazed at your strength. The Lord is evident in your lives and God will take care of you and your precious baby. As a grandmother, my prayers are with you, as a Christian I know My God is with you.