What does your breakfast table look like?

Anyone out there?

Ok so did I not make the message clear in my last update that we are dealing with scary stuff? I normally get several comments about my posts but this time I only got two. I know I haven't been a good support to you all because what I've been coping with for the last several years has consumed me but I still need your support.
It may be scary and you may not know what to say and feel helpless but silence isn't the right option for me. Many of you have asked what can you do? Don't hide from me. I want to hide from this but I can't. Please stay by me with your e-comments at least. It requires so little effort and commitment. No time at all really. Not like the support I need day to day that looks like meals or help with the kids, dishes, laundry, shopping and cleaning that only a few offer to help with. I'm overwhelmed and now I'm alone too. Please reach out to me.

Spring

Kyle's new diagnosis

We talked to Dr Risma from Cincinnati Childrens Hospital Immunology yesterday. We have been waiting for the results of a work up we started earlier this month. She called and said that Kyle has an immunodeficiency and possibly an immunedysfunction. She said we need further testing before we can decide the treatment. I recognized a few numbers and letters and know she was speaking english the whole time but I'm not sure what all she said. I finally asked if he needs a bone marrow transplant and the doctor said no, because it wouldn't help him. Alan did understand though and he is trying to tell me. He said basically the generals of Kyles immune system are dangerously low. That causes the rest of the immune army to run amuck. It's far more complicated than that, but thats all i know for now. As far as intervention for now, we just have to be vigilant about washing hands all the time. Anyone coming in to our home, anyone touching Kyle or any of the rest of us have to wash first and Kyle needs to limit exposure to large groups and avoid places with known illnesses.

We have to get the infection in kyles abdomen resolved before we can do further testing and workup. So, step one - go to another new doctor tomorrow. Step two - wait. Step three- go back to Ohio. Dr Risma said his food allergies/intolerances are related to the immunedeficiency and dysfunction but the how is still not clear. So he needs to be followed at a tertiary care center with expertise in immnology and GI and colorectal. There are only 5 spots in the country we could go. This work up will likely take most of a year, so no changes till then.

From a personal side, Kyle is still Kyle and nothing looks different on him from yesterday to today, but knowing that there is a hidden problem like this is a heavy blow. It requires grieving again. Sigh.

As for how Kyle is feeling. He feels poorly and has low energy. His bottom is bleeding and his body has a petechial rash all over. He is really patient though and is content to play his ipad, watch tv or just be held. He is such a sweetie.

So, thats all the news for now.

Spring

Night meds, 10 tonight!

Elmo's "owies"

Original work by Kyle. Meaning Elmo has owies like me

Cincinnati trip 4, day 7

Well we are leaving in the morning for Idaho. Kyle is responding well to the iv antibiotics and we will be discharged straight to the airport in the morning. I'm so glad that Louise has been here with me.

It's been a week at the hospital. Literally. The two days Kyle wasn't in the hospital he had clinic visits literally all day long. We have done no sight seeing and very little playing. Thats what happens with two admits in obe week! Poor Kyle has had 4 iv's and one blood draw and one missed stick! And two OR visits. It's been fun.

I have "danced" toe to toe with colorectal surgery, GI, allergy, pain, psychology, infectious disease, and immunology. If anyone needs me to advocate for them speak now before I take a break and sleep for a week! Oh right, I can't I'm going home to soothe the ruffled souls at home who have missed me. Well get in line. I'm taking applications for next week. Then I have to repay myself and recover because as cool and strong as I have been, nothing is free and I'll have to work just as hard to recover as I've had to I order to take Care of Kyle. I sure treasure my little man! I also sure value doctors like Marc Levitt, who is not only amazingly skilled but a patient advocate too! He is the reason things turned out so well.

I understand Kyle on a new level and I have a plan of care in place for each of the above areas and it's going to be quite good for him. I've used my brain alot. I've got a great team assembled. I'm not worried about if his life is in danger after today. There are a lot of things pending and some will be new problems that I have to learn about. They will have to be grieved over. I'm never sure what the future holds but I'm ready to face it.

The team leaders are Marc Levitt, colorectal, Kimberly Risma - immunology, Bill Putnam - GI, Connelly,- infectious disease.

Albonia - allergy and Franchosi - Gi did not make the team.

So I'm hoping that over days and the next few weeks my body will un-tense and I can pay the emotional toll from the week.

Day 8, heading home. Nite nite

Spring

Aunt Wezz and Kyle

Cincinnati Ohio may 2012

Cincinnati trip 4, day 6

Busy day. Hard day. Don't want to do this one again. Kyle got admitted for a bad infection again and IV antibiotics. New providers on my "black list". New favorite provider. Wish Alan was here, So glad Louise is here.

Spring

Cincinnati trip 4, day 5

Today was a record day. We has a 5 that's right, 5 hour clinic visit. Lots of waiting. 3 RNs 1 fellow and 1 md. Dr Kimberly risma, immunologist.

She asked how we got to her clinic. I told her the EE clinic put us on your schedule. More than that I don't know. She was very nice and appeared very knowledgeable and after we discussed Kyles issues said, that's a lot for you to deal with took my hand and said I'm going to add to that List. She started to explain how, I became totally confused (which is hard to do to me...). When I said I felt like I was missing something she said she was too and we needed to wait for the labs to come back. And wouldn't say more. It has something to do with T cell malfunction And lymphocytes etc. I called again later back to our nurse and she dodged my questions. And just said wait.

It feels like they are slowly preparing me for really bad news. I'm aggravated I don't know what yet. I have some guesses but none are good. It feels like one of those defining moments in life is approaching.

Then on tip of that Kyle developed on infection at the revision site. It's quickly spreading and getting bad.

Anyway, lots to look forward to for tomorrow. I'm packing the hospital bags just in case...

Spring

Cincinnati trip 4, day 4

It's been a long, intense, lonely and exhausting day.

Kyles ok. The center of his belly button is gone. It looks a little disturbing but it is what it is I guess. Another thing to adjust to. Hopefully it works better now. Kyle left the hospital to tonight. He was very happy and made happy sounds on the way to the car and as we drove away. He is snuggling on my shoulder now to sleep. He wants to be held alot! It's very sweet! I got a cold and my eyes are getting goobers. Louise just arrived and I should see her soon.

I'm too tired to give my normal detailed accounting of today. For you technical types I'll just have to fill you in later.

Spring

Fwd: Mom and Kyles day

I thought a real life conversation might make a good update on Kyles day.  Enjoy...

Spring 

Begin forwarded message:

From: Spring Bean <springcbean@gmail.com>
Date: May 7, 2012 7:32:02 PM EDT
To: Capture The Magic Blog <sabean1.climber@blogger.com>
Subject: Mom and Kyles day

Spring: Now I'm annoyed about the "big system" that I have no control over!

I'm waiting in the prep (it's Been almost two hours now) for Kykes endoscopy Etc without a real plan for what will happen afterwards. I'm tired of explaining Kyles needs over snd over. And having so many different opinions and thoughts. I hope this is worth it.

Alan: it will be, hang in there.

Spring: Will it. Where will I go tonight?  The hospital is so much easier than a hotel or home for Kyle. It reminds me that he really does require institutional levels of Care....Not to say that it's better for him but in a twisted way it's a nice break for me.

Kyle just went to sleep for the  procedure. Gi and colorectal are both saying sure he can stay but want to have the other team make up the strong medical justification for insurance...
I don't really care but I smiled politely and told them how nauseated he gets and about his large residuals and low sats... Anyway. I don't care I'm hungry and have a headache and am sick of the drama.

Alan: You are doing beautifully.  Get some food, get away from the situation and something should work out.

Spring: Gi says his insides look good. Francisis expects biospies to be normal. Then the next step is introduce new foods and rebiospy in 3 months.

Alan:  Biopsy results were not cool  we are not going to keep doing this five times a year.


Spring: Yea. I'll see how the rest of the info goes and then we can make plans from there. You felt like its worth it to do this. It's hard not to be emotionally up then down with each interaction because we've anticipated it so long. I'm trying to follow my own wisdom and not get too hooked by incomplete data.

So far the info and possibilities are the same as we suspected. Because of our knowledge and life with kyle there is rarely something that blows our socks off now   

It could be liberating for him to be able to eat more things without risk. Although I'm not enthusiastic about reintroducing things he hasn't tolerated. I consented to a study being done by the Gi guy in Denver. Sounds like his expertise is as great as these guys here, not that I'm saying I want to start over with another new doc but simply that we have another option. Denver may feel less challenging to follow with. Cheaper shorter flight...

Alan:  No comment yet.  Let's see how we do.

Spring:  Agreed. I feel disappointed  in the preliminary report. I feel caught in a river current that I can't control. It's not a pleasant feeling for someone who loves control.  

Alan:  I'm done splitting up the family for medical travel.

Spring:  Yea I know...

It's amazing how whatever the family wants is never he same as the hospital plan. If I wanted to go I'd have to stay if I wanted to stay Id have to go. Why?  (that's rhetorical) my mind is numb. I'm exhausted and all I've done is sit at the hospital, hold my child and leave my life to someone else's discretion.

Alan:  Yeah, I know.  I love you.  Keep up the good fight.

Spring:  Thanks well they decided to keep him. They made him npo. They should thank me because he just started retching after they gave him zofran in the OR.  So I vented his g tube before giving him his night meds and I got out 100cc!!!!  All that worry about the insurance company is now gone because he truly needs the IV fluids as "twas foretold" by yours truly...

That means likely tomorrow he will be here overnight again because as I said his tummy doesn't wake up....I don't want to stay tomorrow....

 Stay tuned! 

Kyles hospital buddy Elmo

Yes Elmo has an IV and a g tube like Kyle!

Cincinnati trip 4, day 1

Hello! Kyle and I are on our way to Cincinnati Ohio again. Alan is staying home to take care of the other kids. We plan to be there for a full week. Longer if needed due to complications. My sister Louise will join me half way through.

Kyle will be admitted to Cincinnati Childrens hospital tomorrow morning. He will have a couple procedures on Monday and surgery on Tuesday. Depending on what the surgeon finds and how he does determines when he gets released. Then Kyle has 2-3 clinic visits a day for the rest of the week.

The surgery is to fix a complication from the surgery in October. The procedures and clinic visits are to reevaluate his food allergies, metabolic disorder, chronic pain and immune system.

Merlin, Kyles service dog, missed coming with us in his role as a service dog by only a month or so. He started working in public with his little vest a few weeks ago and our trainer hopes that he will pass the first public access test within a month! I'm so pleased with our little dog! I'll miss him too!

I'm not "looking forward" to the next week. But I'm ready to get on with it. It's going to be a hard week. These things always are. It makes it worse to pretend that it won't be so I say "bring it on'"!

Spring

Our budding businesswoman

Sierra has set up her first business. Making flower duct tape pens. She charges $2.00 each. She has sold them at school mainly. She has now made $14! She said that the other kids at school have started making them so her orders have dropped off. Bummer. But what a great first business venture! She has now had her grandma Bowden advertise them for her on her website. Good luck on selling!

Spring