Patient Update

Here’s the patient update….

Kramer had a rough Thursday.  It was a little better than Wednesday but still not wonderful.  As the day wore on, I think he got to feeling a little better all along.

We managed to get two things done that he had been wanting to do…
1-cut his hair
2-fix his debit card

Sometimes it’s the little things.  He’s at the point that things as little as this can be helpful…I’m so thankful because these things, I can do for him.

Friday he managed to get out to work for 3 hours or so.  That was a blessing to us both.  He so misses work..and I miss the normalcy of being in the house with the childcare kiddos by myself.

The Gannon report….
Hmm…we’re not quite sure yet.

Thursday he had a bloating episode again.  He threw up all his milk again.

We don’t know exactly what or why it happened.  He’d only had the expensive formula so we don’t know quite what to think.  Kalissa called in to the doctor and…. a suppository was prescribed.

We are all frustrated as Mayo told us he wouldn’t be released unless he was eating and pooping on his own.  Well he’s not pooping on his own.  UGH.

Everyone in the family has had a friend or a friend of a friend or niece or someone else they know who had something unexplained like Gannon has.  So we’ve all been reading about all sorts of intestinal issues doing a little “backseat doctoring” which we know is dangerous but also, unavoidable if you get this not for sure, vague diagnosis.

So someone sent Kalissa a message suggesting this:  Inguinal Hernia.

Kalissa read through it all.  It sounded plausible.  I thought it did too…Kelli did too.  Hmmm.  Well Kalissa had a follow up appointment with her local doctor and presented it to him.

He thought Kalissa had valid points and her concern.  He listened and Kalissa felt like her concerns were heard.  He told her that he was surprised a couple tests weren’t done that he thought would have been.  These were tests that we were told they were going to do if they found out it wasn’t Hirschsprung’s but never did once the Mayo doctors decided to test out the dairy allergy premise.

Kalissa then asked the local doctor what she should do.  He said it was up to her but they both seemed to feel it best that these tests get done.  Kalissa opted for a second opinion and asked for her case to be referred to the University of Iowa Hospitals.  The case got sent and they called her in about an hour and told her to bring Gannon immediately.

Thankfully Carver was already napping here…so she packed a bag and headed that way.  Craig stayed here for now and will get Carver settled with one of us Grandma’s and find out if Gannon will be admitted before he takes off and goes.

So Carver is going to be missing his little brother again.

Worrying about Gannon is hard on us all.  It’s so stressful for Kalissa.  She wants to help here but knows Gannon needs to come first.  I worry for her.  It’s also hard when her gut is telling her there is something more.  She keeps asking me, “Mom, am I overreacting?  Am I being crazy?”  I keep saying no.  It isn’t normal for a kids’ belly to blow up like this after drinking a bottle…and he’s drinking the formula they recommended.

The tummy marks are to measure how distended his belly gets.

I’ll keep you posted and let you know when we know more here.  I am feeling a little bit like it’s that movie Groundhog day and we keep reliving the same day over and over again.  UGH.

25 thoughts on “Patient Update”

  1. My “Mom gut” agrees with Kalissa. Mayo dropped the ball and a second opinion is necesary. Hoping for a more definite diagnosis this time – quickly!

  2. I’m so glad Kalissa trusted her gut and went ahead for a second opinion. No matter where you go, something can always get overlooked…even at a place like Mayo. I hope they figure out what the real problem is so it can be fixed.

  3. She’s definitely not overreacting— that does not look normal! In fact, it looks profoundly uncomfortable. Hope they get some real answers soon. Poor babe. Poor parents.

  4. I have a milk protein allergy as do all 5 of my kids, tested with positive results. This is NOT a normal reaction to a milk protein allergy and Kalissa is right to follow her instincts. When my oldest was 2, they diagnosed her issue as Crohns disease and I knew in my heart it was wrong. This was a huge, Ivy league teaching hospital, but I knew they were wrong. I consulted my boss, a doctor, and he agreed woth me. He hooked me up with a specialist in a nearby state who immediatly and correctly diagnosed the milk protein allergy which was confirmed with testing. Follow your gut always.

  5. A Mom should always trust her gut. Our daughter was I’ll when she was little. They kept telling me a virus. I knew there was something wrong. I kept bugging them. Finally they listened to me. She was at the early stages of a bad illness but because we caught it early she is fine today. God Bless you and prayers for your family.

  6. Oh, poor Gannon! My heart is with you all! I pray you get some answers soon and Gannon gets relief.

  7. Penny Holliday

    I am sad/upset about Gannon! He looks so uncomfortable! I think Kalissa is correct in following her mother’s instinct & seeking more to help Gannon! My youngest had milk allergy & her little belly distended to just a pot belly, she cont. to poop on her own, a horrible facial rash & continual screaming especially after bottle. No special formula like Gannons available at that time & we tried every formula available. Finally ended up using goats milk . Not recommending but just telling our experience to possibly help you!

  8. That poor little guy!! I feel so bad for all of you. Tell Kalissa to trust her mother’s intuition. It’s got to be so disappointing that Mayo didn’t do all the testing that they said they would and that let him come home before he was really pooping. Prayers continue for you guys and for Kramer too. Hang in there!

  9. Praying hard for Gannon, Roger and your whole family. I’m so thankful she’s not trusting the doctors and if having him checked out in Iowa City. Pray they get to the bottom of the issue as soon as possible.

  10. Susan the Farm Quilter

    She is definitely NOT over-reacting!! There is definitely something weird going on with little Gannon! I’m so glad she got something to push her in a direction from a reader and that she was able to take him in immediately!! Keep trusting your gut, Kalissa!!

  11. Nikki DeRamus Moshier

    I’ve never had children so can’t offer any advice. But I am happy that she is listening to her heart and head and pushing for Gannon’s well- being. I hope it gets resolved soon.

  12. I’m so sorry this seems to continue to be unresolved. On the bright side, maybe he won’t need that expensive formula. Here’s to a thorough workup and hopefully, a quick resolution.

  13. Juddaca Heater

    I learned on my second baby a mother (parent) MUST be her child’s medical advocate & push past outside judgements, dr egos, etc. my son never slept, cried too much, & eventually evolved into vomiting what we fed him. We had no internet then. After 4 months I finally bulldozed my way into a specialist that diagnosed him with pre-ulcers in the esophagus! Came home with meds & had a brand new baby! The specialist admitted that the medical community tunes out parental concerns if the baby is gaining weight. About a year later , I was in Seattle & was listening to a “talk show” with a parent of a baby with the same symptoms & diagnosis. The dr then explained that ulcers in the esophagus have a 50% mortality rate! I almost wrecked the car! Nobody had ever told me the danger my child had been in. What if I had not bulldozed through with my questions? What if his medical mystery had dragged out to the point that they became full-blown ulcers? My child could’ve died if I had not pushed in pursuit of satisfying solution. By the way, because my baby was so sick, I was a walking zombie. I also had a two-year-old that needed attention. It is a very difficult time to try to think clearly and solve a mystery, a medical mystery I am not qualified to solve. My 23 year old son is 6’4” & strong! I thank God, often we got through that time. Follow mother’s intuition & fight for your babe! I’m praying for your family.

  14. My heart hurts to hear of the suffering that Kramer and little Gannon are going through. I 100% agree with Kalissa — there is more to this issue. I hate to say this, but a dear friend of ours went to Mayo after seeing 2 doctors in Michigan while they were on vacation. They had no idea what could be wrong with him. When he got to Mayo he had severe pain and neurological problems and he was hospitalized for just a couple days and discharged him without a diagnosis. They went to the point of telling him that he may be “early” in a disease that could not be diagnosed. When he returned home he saw his primary care physician and with a simple blood test he was diagnosed with Lyme’s disease. Not a single one of those numerous MDs ordered that test. It did not have a happy ending — He had Lyme’s for so long that the neuro damage was severe and irreversible. He is in a nursing home and cannot do anything for himself.

  15. Hurray for blog readers who offered up there own experiences and were able to point Kalissa and Craig to something else and to the family doctor who listened and worked with them for a better answer for sweet Gannon. I hope they get those answers with a new pair of eyes looking at him. Prayers for a safe journey for Kalissa and Gannon and prayers for some answers and healthy prognosis. It was nice to read that Kramer was feeling up to going to work for a few hours, normalcy is welcomed when you are dealing with cancer and the side effects of the treatment. Blessings on you all

  16. Jo you are amazing! When I read your blog, I realize how inconsequential my issues are. Continued prayers for you and the family. Gannon and Kramer deserve to be healthy. And so do you, so take time for a little R&R when you can.

  17. Thank you Kalissa for following your heart. Your baby is so important and deserves the attention he needs. Prayers that a proper diagnosis is discovered soon and sense of peace for this little one.

  18. LaNan Eldridge

    Gut instincts r so important. Prayers for answers and days of comfort for both Gannon and Kramer and strength for the rest of the family. I will share with you our granddaughter’s journey as a newborn and unusual medical condition . Take care! And I saw your quilt in the magazine….so pretty! Might have to be on my to do list!!!!

  19. Deborah DeBerry

    Have you ever heard of CDH, congenital diaphragmatic hernia? Just something I hope can be eliminated. My prayers are with all your family as you go through these struggles. God bless each and every one of you, may you rest in the palm of his hand.

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