Oh my goodness... I am BEYOND frustrated.
We spent four hours in the ER today. After a step backward today on the eating front, I called the pediatrician. She directed us to the ER to get IV fluids for Jonah. So after getting to the ER, we were assigned a bed and a curtain and we spent four hours, got seen by about three sets of doctors, all for them to decide he didn't need IV fluids after all. I think they might would have done it just as a precaution if he had been a "normal" kid, but didn't want to do an IV unless it was absolutely necessary given his fragile skin. Of course once we were there he drank four ounces of Pedialyte and three ounces of formula. AND he had a wet diaper. Don't get me wrong. I'm thankful he didn't have to get an IV, but geez, it was a long afternoon. The one good thing about today is that now, if we have to go back again, we will be directly admitted to the pediatric floor and won't have to go through the ER again. So things will be faster moving (and hopefully less germy) if we find ourselves in this boat later (ahem, tomorrow).
And then we got home and he only ate an ounce before bedtime. Grrrr. He only ate 6.5 ounces of Pedialyte and 9.5 ounces of formula. But so far he's still crying tears and peeing at least every six hours. I don't know how long this not eating can go on before we have to take additional steps though. He's losing weight, and he's getting more blisters and not healing as well as usual.
I feel like we HAVE to have a backup for when he gets sick. It's not fair to force feed him (and it's impossible) and it's too much weight on my shoulders. I don't feel like I can do it anymore, selfish or not. It's too much pressure, and I feel like it's just making his aversion to eating even worse.
If they had said, "We should do a g-tube today," I would have said, "Go to it." We're thinking, talking, and planning (just in case), but I am so over all this. If this is what happens when he has a little cold, what's going to happen when he gets a two week flu bug or something like that? I don't feel like it's safe to not have a backup for when he doesn't want to eat. Hydration and nutrition are just too important.
But I'm sure I'm talking too early. Who knows what will happen over the course of the next few days? I just want it to be really clear. I can't take this daily (hourly) back and forth, and neither can he. I want him to eat when he wants and when it's fun but to still get the calories and nutrition he needs. I don't know what the answer is. Everything with EB seems to be lose/lose.
37 comments:
(((HUGS))) How frustrated you must be! I will pray specifically that he eats more tomorrow and that this is behind you soon. Praying that you get some rest too! (((HUGS)))
Praying for lots of eating and drinking tomorrow!!! And for some relief and rest for you. Here I am frustrated with allergies in my little ones...us mommies sure do let everything settle on our shoulders, don't we?
Oh Patrice....my heart is heavy for you. This is a decision that will not come lightly for you and Matt. You will do what's right for Jonah, you always do. Prayers to you, Jonah and Matt.
I have absolutely no way of understanding what you are going through and the pressure you are feeling, but I do know God will help you through it. I absolutely LOVE all three of you, even if I do not personally know you. I actually took a nap this afternoon and had a dream that I met you. Sorry if that is beyond weird, but honestly it was neat. Who knows? Maybe someday it will happen. I am praying for Jonah to stay adequately hydrated and get the nutrition he needs, and I am praying for your strength. :) I hope things get better quickly!
I was on my way downtown when I got your tweet about going to the ER. Prayed then, and again as I drove past the hospital. So sorry you had a rough day. Will continue to pray for Jonah to eat - and for no gushers.
Praying so hard, for a hungry little Jonut, and a comforted mommy!
Maybe you should take him over by the ER tomorrow - since he decided to eat there... :) only kidding for a quick smile... but isn't that how it always work when we're worried about our kids and get them to the Dr - and tell them the issue and then they seem to instantly prove us wrong (or not as drastic as we say)?!
I can't imagine how frustrating it must be! I know how frustrated I get and our kids do not struggle with a serious health condition... we're praying for you all!
I read your blog from the beginning yesterday, and I can tell you a few things about the g-tube. 1, you'll do the right thing either choosing to get it or not, you have made wonderful decisions for Jonah his entire life with such grace, I'm a huge admirer. 2, g-tubes can indeed be handy.. I know several parents who sleep better at night knowing that no matter what, they are able to get formula and water into their children. It's in no way selfish to want him to be well fed and hydrated.
Hang in there and I'll be praying for you and the little man. Your story is truly amazing.. the part that touched me the most though was when you said early on "Sometimes I don't want Jonah to be an inspiration, I just want him to be 'normal' and healthy." thank you for sharing your story with such honesty.. it's beautiful.
Oh my....I am so sorry...for all of it...I hate that your beautiful family faces the issues it faces. Hearing this tonight...just makes my stomach churn in knots...I can't imagine how you must feel. I will be saying EXTRA prayers for ALL of you. May the Lord BLESS you all with FAVOR and give you what you NEED!
Saying a prayer for you tonight.
Would an NG tube be a less invasive, temporary option? Or not because of possible blistering?
Praying for you guys.
Patrice, I really have no right to give advice since I don't know you at all and know only a tiny bit (from what I have read here) about EB.
With all you have to deal with as you care for Jonah, it seems especially cruel that you have to struggle just to keep him nourished. I can feel the worry and frustration in your posts. I agree that you need a backup for his nourishment in case of illness or significant refusal to eat. You need some peace of mind regarding this.
Vicki in Tennessee
(a grandmother who reads your blog regularly)
Hey Williams Family! You are amazing!! It is quite obvious you know what is best for Jonah, so whatever you decide will be best!! A family member is a total health nut. She was raving about the benefits of coconut water for dehydration. Just get a coconut and drain the juice. I think you have to put a nail through the holes then crack it....it's been awhile since I have cracked one though. Maybe you could offer some of that when he refuses the Pedialite?? Or add some to his bottles. I had never heard of it before so I thought I would throw it out there. Hang in there, just one hour or one day at a time, praying for yall!! Jonah is so cute, I LOVE the pics!!
Saying a prayer for you tonight. I cannot imagine how frustrating that is. I understand how you can feel a g-tube may be the best course for your backup plan. I will pray that he eats more and gets back to his "healthy" self again.
Hi Patrice, you don't know me, but I read your blog and have prayed for you and your sweet Jonah for a few months now. Anyway, you are always on my mind as a mother, because I can only imagine the stress you go through. As another one of your friends mentioned, mothering is frustrating. period. not to mention all that comes when your child is dealing with all that Jonah has to deal with. So, you stay on my mind a lot, and I try and pray for very specific things according to what you write. Thank you for your transparency. So, I will be the first to say I am very ignorant about your situation (except for what you share), so I might totally be giving you an empty resource here, but I also know a family who has a son that has problems with eating (that is putting it mildly, really). He has completely different issues than Jonah, but eating has been one throughout his life. I believe he is about 3 yrs. old now. Anyway, a g-tube is one thing they have had to make decisions about in their past, so they can relate to you, I would assume, on some level. I am going to give you a link to a post that the mother wrote about feeding her son, because it describes their entire journey all in one post, and she talks about a place they have gone to (twice, I believe) for help. She calls it eating camp. I have NO idea if this might be something that is even remotely helpful to you and for Jonah's specific situation, but I just felt God telling me to try and connect you with this family and their knowledge. I don't know what your financial resources are for Jonah's health, and I also don't know anything about this place (Our Children's House at Baylor)...but, if it can be of ANY help, I pray God will lead you to it. Blessings to you for this day and all of those that are to come. May God give you peace, energy, and the ability to continue moving through your journey with Jonah.
Love, one of your prayer warriors,
Alison Thompson
the link to their blog post is: http://thephillipsphamily.blogspot.com/2008/09/feeding-kanyon.html
our family website...
www.thethompsonfamily.wordpress.com (in case you want to know who I am!)
Praying for your sweet little guy... and you too!!!
I will pray for Jonah tonight...
a blog "friend" from Wisconsin
((((HUGS))))
Praying for all 3 of you to feel better, and for your mind to feel at rest with any decisions you may have to make regarding Jonah's eating.
Continuing to pray for Jonah.
Our little man had therapy today and his therapist just went through a trainging seminar in Florida. The speaker, well known in the feeding therapy arena, did a half-day presentation on G-tubes ( how perfect is that timing considering we are prob. going to get one for Cor at month's end!) and she told the class that the old thinking that g-tubes are bad, proof of failure etc has gone out the window..and that current thinking is that they are good and GREAT for getting through particularly tough times in a medically fragile child's life...a way to get from point A to point B...from infancy until an age when the child can be reasoned with etc...
It doesnt mean that Jonah cannot eat, by mouth, it just means that in times like these, when illness or stress prevent him from consuming what he needs, you are able to be on the OFFENSIVE and get him the nutrition in those times that he just can't eat. You are actually keeping him away from the hospital by having a backup..saving him from those germs and treating him at home preventing dehydration etc.
Plus, Patrice, you deserve to live a life that is outside the second-by-second stress of ounces and fluids. You know? You would be giving Jonah freedom from being forced to do something that he doesnt want to do. And who knows, it might open up a world of eating once he is free to explore new foods at his own pace, and taste, on his own!
Of course, you have to be 100% sure that the decision is best for Jonah...because his medical needs/risks are far more precarious than what we are dealing with Corrigan...but I feel SO much of your stress and anxiety and I want BOTH of us to feel like we have some control over our children's disorders. A gtube just might give us that!
Praying daily and full of love for the family that you are.
Mindy~
I am so thankful that he drank for you guys and that you are home. I have felt so many of your feelings- for the first year of Bennett's life I did not think I could handle the thought of a g tube. Then, when he was 13 months, refusing the bottle, on the verge of dehydration and ended up in the hospital with a bad virus, the Lord took away my g tube fears and as a mom I just wanted nutrition and hydration for my baby...in whatever form he needed. Feeding stress is like no other stress I have ever experienced- I felt SO helpless on so many occasions, and bless his little heart; he just could not help it. You are supported on this journey and whatever ends up happening, there is no doubt that Jonah is a truly beautiful and special little boy! Hugs, Kelly S.
I'm so sorry. How stressful for you. I have just an inkling of how you feel. Once my daughter got sick and couldn't keep anything down for a couple days. I was so worried. The doctor was ready to admit her to the hospital. Instead I dripped pedialytle down her throat every 7 minutes for 5 hours. I'm sure this is nothing to what you go through. I will pray for him.
Hi Patrice-
I SO wish I had something wise to offer here. It's always so much harder to make decisions when you're in the thick of a crisis (at least it is for me). I'm going to pray specifically for you and Matt to have clarity on the g-tube situation, and that you'll have peace as you try to get Jonah to eat/drink in the meantime.
And always, ALWAYS, am praying for sweet Jonah!
Love,
Laura
Praying for you Patrice and praying that Jonah can eat and drink tomorrow--all he want to and then some more.
I've spent so much time in the ER, between my husband on chemo and his constant need to be rehydrated, and my lately my Mom, and then myself. I never have grown to love it, but I do so appreciate the ER staff for all they do. They sort of are forced into specializing in everything all the time with a break from the trauma. They do amazing work, all in an effort to help us feel better. I've never left the Er in under 5 hours. Never. That would be a treat.
I love my son's g-tube because it gives me the ability to relax about his eating (or not eating, as the case can be at times). Like you, I got to the point where I could no longer DO THIS with regards to trying to keep my son hydrated and balance out how many calories he took in versus how many he puked back up. The stress of that is beyond understanding unless you've done it, and you have EB on top of that.
My personal thought (which means zilch, I know) is that you should get the g-tube and take the stress of one thing out of your life.
I know you'll do the best thing for Jonah, though, because you always do, and no matter what you do, everyone is here to support you through it.
I read your blog every single day and I've fallen in love with your family and Jonah! You're all so strong and I admire that. I'll be praying for Jonah's health and rest and comfort for both of you!!
Sorry Jonah is unwell. I know you are hesitant to get a PEG, but my daughter's PEG has saved us many a hospital trip and IV because no matter how she feels I am in charge of her calorie intake!
I will pray for Jonah too...
We will be praying for Jonah (extra special) this week that he will drink some of that delicious pedialyte and some formula! I hope you can get some rest in the meantime. He is looking more and more like you!
Hi Patrice:
So sorry that you guys had to go the ER. With an EB baby it can be sooooo stressful. Praying extra hard for God's guidance with the Gtube. I hope you decide to have it put in. I really think it would help so much. I wish that Leah had one put in when she had her trach done. I really think that eating well does help their skin. Leah did not eat well either, just like Jonah. Meg always had a problem feeding her. Taking care of the skin, plus the feeding issues is enough to drive you crazy.
Hope that God gives you the answers you need soon. Please take care of yourself. Love you guys. Love Leah's Nana
I am so sorry that you are dealing with this stress on top of everything else. I pray that this situation gets better soon. I have been there with the eating difficulities with my daughter. Although she does not have EB, she had an aversion to food and for 6 months, we watched her constantly refuse food and lose so much weight ~ frightening as she was a peanut to begin with. Many, many trips to the ER for IV fluids (and several trips that ended like yours with them deciding she was okay enough to avoid the IV ~ so frustrating!) We were able to avoid the feeding tube when her GI doc prescribed an appetite stimulant that worked. Two years later, she's still a peanut but now will eat enough ~ praise God. I am praying you find a solution that works for Jonah and gives you much needed peace.
Beloved, I wish above all else that you would prosper and be in health even as your soul prospers. 3 John 1:2
Prosperity and health are yours today!
God bless you! And bless you and bless you! Praying for you and Jonah and that eb just goes the heck away!!! Unless, this is just what is needed by someone, by lots of someones, peeps who need to see God in action, through tough and tougher, see His people dealing through bad times and worse, and never loosing faith and hope and trust. You can do it! You ARE doing it. And He's really not going to leave. He really is holding you and is just as frustrated and just as sad to see your pain and suffering. But He knows...
Sometimes a change of scenery also creates a change in eating/drinking. Is it nice enough outside you can go for a walk? Sit at the park? Even go for a long drive with the windows down? Lots of times when kids are either excited about something or bored (in the car) they will drink without realizing it. I hope today is better for all of you.
How frustrating! It is SO hard to tell when they are dehydrated : ( I am so sorry he's having such trouble eating/drinking. I cannot imagine how much weight is on your shoulders to try to get him to. Praying for you guys.
i can only imagine the flustrating journey that you find yourself with eating and intake daily...i have a very horrible eater for what ever reason but strangley enough if i freeze her food like popcicles and give them to her she will entertain the idea and fool around with it more sometimes i cut it up in pieces and she will finger them, i have gone as far as freezing milk and cheerios...which are soggy at the time of freezing...im sure youve done everything but you just never know when on person insane trick could be a new trick for you...also if i switch where she eats everytime she takes more some times she is in her stroller and we move from yard to yard, watch a movie even play, i have even feed her in the tub...
I was just sitting here thinking about you and said a little prayer...hoping that Jonah is eating better today, and praying for clarity and peace of mind for his wonderful parents! ((HUGS))
Hang in there, Patrice. Praying for you!!!!
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