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Fighting for Answers

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I never did have a chance to update with what life as a mom to a baby with a G-tube was like, before our lives were in another whirlwind mess again. We had almost two full weeks at home after two weeks in the hospital with my baby girl, and it was definitely interesting trying to get used to feeding my daughter through a tube in her stomach.

Sadly, it didn’t end there. We were hoping this was the end of the hospital stays, but God had other plans…Here is a little bit about what has been happening through clips of my Facebook statuses and some pictures:

March 17th:

“Liz had several severe choking episodes tonight. We think she may not be tolerating her feeds since the pediatrician told us to go from 3.5 oz. to 4 oz today. Will be calling a few doctors tomorrow. The bad thing is, she has so many specialists it’s hard to know which to call in these situations. Still feel sick to my stomach from it all. Nothing like your baby turning beet red while choking that will make your heart drop to your stomach.”

March 21st:

“Elizabeth has continued to have severe choking episodes where she stops breathing. We spent the morning talking to doctors and specialists none of who can give us any concrete answers. They told us to go to the ER, but the Macon Children’s Hospital already told us when we were there previously, there was nothing else they can do.

So now we are on our way to the ER at Scottish Rite Children’s Hospital in Atlanta. Please pray for safety traveling and that they don’t turn us away. We are hoping for better doctors with more answers.”

Fighting For Answers
Our view from my daughter’s hospital room.

March 21st:

“We got to the hospital about 3 pm this afternoon and have had exceptional care. We spent about 3 1/2 hours in the Emergency Room and basically told her entire life story from beginning until now and gave them my binder full of paperwork I have saved. The ER doctor said that he couldn’t admit us, that usually only her regular doctors can, but he made a few phone calls to plead our case and we have been admitted.

Tomorrow we will see a GI, a Neurologist, a Speech and Occupational Therapist and possibly a Pulmonologist. On top of that they will do blood work, a swallow study, and change her feeds around. They don’t really have many answers for us right now except that everything is pointing to neurological disorders, but that’s all we know. Basically, we are getting a second opinion on everything.

They also weighed her and she has lost 6 oz. in two days. She is back in failure to thrive at 1 percentile. Right now, we don’t know how long we will be here, but everything here so far has been amazing as far as the care. I really feel we are in good hands and did the right thing by coming to Atlanta.”

March 22nd:

“Adam broke my heart this morning when he told me on phone: “Come home, Mommy!”

It’s hard when your three year old can’t understand why mommy and the baby have been gone for two weeks. But it’s even harder when mommy and the baby come home for two weeks and then leave again. Adam is autistic and although he is smart, we have a hard time explaining and helping him understand what’s been going on.

I struggle with not being there for him, and how it affects him to have both mommy and daddy gone so much. Now that we are in Atlanta, we are over two hours away from him and hearing him so sad on the phone just breaks my heart.

March 23rd:

“Not too much has happened here at the hospital so far. Since it’s the weekend there is only so much they can do. Yesterday, we saw a Speech Therapist who talked with us and scheduled Elizabeth a swallowing study for Monday. We also saw a Nutritionist who we talked to about her weight issues and her severe gas issues. She is putting her on Simulac Alumentum again to see if it helps with the gas and also at a higher calorie intake for her as well. If this doesn’t help we will try Neocate which is a presciption-only formula.

We also talked to the pediatrician in charge of Elizabeth here for over an hour about everything – the whole picture. She is saying she thinks this is either a neurological or genetic disorder. The problem is all the tests that the neurologist told us to do will take time, it’s just the way it is, so for answers there is not much more to do, but wait for the test results to come in. She is leaning toward Mitrochrondrial Disease, which is also what the Neurologist in Forsyth mentioned.

We also will be seeing a GI today to get a bigger picture on her issues, they are concerned maybe her Fundoplication (the surgery she had) slipped and is not in place, so they will be checking all that by x-ray.

The pediatrician gave Liz melatonin last night to help her sleep. She has been hardly sleeping for us, and it’s been miserable. Last night was a lot better. They also, did a culture of her G-button site because it is infected, so they are making sure it’s not anything worse than that.

We are not sure how long we will be here, the pediatrician said she won’t let us go without some kind fix for the choking. They are going to teach us CPR for infants so in case we have trouble at home we will know what to do, and they are also talking about sending us home with an apnea monitor so that we can know if she is choking or stops breathing or something.”

March 24th:

Yesterday went well. We saw a physical therapist in the morning who told us Elizabeth is behind on some things so they will be doing PT two times a week while we are here. When we get back she will be evaluated at Sensabilities to talk about regular therapy.

We also saw a GI in the afternoon and talked with her for over an hour. They have so many ideas and things we can do to figure this out and they will be taking over most things I think from here on out.

This morning she will have a Swallow Study done and an Upper GI. They are looking to see if anything has changed with swallowing and to see if maybe she has a hernia or something else wrong with the surgery. Depending on the results of these, the next step is to try a PH Probe that will go down through her nose and into her esophagus for 24 hours and will tell us if anything comes up or down and basically what she is choking on. They are also going to test her for malabsorption as she is struggling to gain weight still.

After that, they still have a lot of ideas they can do to help her. Yesterday she did have a very very small choking episode, and they were able to see a little bit what it’s like, but it was nothing compared to what has been happening at home. They are still trying different things with her feeds to see what’s going on and what helps and what she can tolerate.

Yesterday, we got to take a walk around. The nurses here let us take her anywhere in the hospital so we walked around with her and looked at things, even went outside at their little “park” for a few minutes to get some fresh air. This place is massive. It feels like Atlanta airport at times with how much going on and how big it is, but we love it.”

liz and me

March 24th:

“We’ve had quite the excitement here today. Elizabeth’s entire G-tube came out and now we are just sitting here with a gaping hole in her stomach waiting for them to fix it…”

March 24th:

“Elizabeth just had a choking episode a little while ago. It was just as bad as as it was at home. Her face turned beet red, and I yelled for the nurses and they were able to see it happen. So glad they were able to see it for themselves. Even in the hospital surrounded by good care, it makes my stomach sick.

It’s been an interesting day… The Swallow Study showed no aspiration, and the Upper GI showed no problems. Tomorrow they will do the PH Probe for 24 hours to see what’s going on. They are talking about doing an EEG of the brain just to make sure her episodes aren’t seizures. They don’t think they are, but they said it may be helpful to measure brain waves and such.”

Infant EEG
My sweet baby girl getting an EEG done.

So far, all tests have come back normal and contrary to what everyone may think, I am very discouraged about this. As much as I don’t want something wrong with my baby, I am still fighting for answers. I don’t want to go home still not knowing what’s wrong. I don’t want to go home hoping and praying my daughter doesn’t have choking episodes again.

There are still some tests results we are waiting on here at the hospital, and the neurological and genetic testing and studies still have weeks before they come in. I know there is time to figure all this out, but my patience is running out. I am praying for answers. Will you pray with me?

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  1. I have been keeping Elizabeth in my prayers – from one mom of a special needs kid to another – I know how “no answer” to what the problem is – is the worst answer. If you could only have a diagnosis and a name of what’s going on then you can fight! Hang in there. I’m so sorry.

    1. Thanks Laurel, it’s so nice to know someone who understands. You are exactly right, a diagnosis and some kind of answer and I would do anything to fix it. Hoping for some more answers today. We’ll see… Thanks for praying!

      1. Kathryn, my heart breaks for you. My son has some of the same issues that Adam has. He is mildly autistic, speech delays and he and his twin sister although they are 5 years old, still eat baby food. It’s so frustrating to be at family gatherings and see their younger cousins eating grown up food and I have to go find a quiet spot to spoon in their baby food.But I cannot even imagine having that plus a baby girl with all her health problems.It must be very scary. I’ll be praying for you all. {{{HUGS}}} from one mom to another. Hang in there.

  2. I fully understand the negative tests being discouraging. I feel the same way with my youngest. Every time we go for a new test I’m half hoping it will show something! It makes me feel guilty but I just want the pieces to fall into place so I can help him. I think it’s a normal feeling. Your family stays in my prayers and I really hope you find some answers and are able to go home soon.

  3. kathryn, i am praying for you and your family! i hope they figure out what’s wrong with elizabeth and that you’ll have a plan in place so that you can return home to adam. xoxo!

  4. Kathryn, you do not know me, I popped over from a post April Donaldson made, but I want you to know I am praying with you. Praying for answers. Praying for peace. Praying for healing. A special needs mom of two myself, I know the struggles. You can count on my prayers.

  5. Praying the Lord will give doctors wisdom to figure out what is going on with your baby girl. Praying He will also give you peace, strength, and rest.

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