Today Ambrose was admitted to Phoenix Children's Hospital. We have been waiting a week for a non-surgical bed to open and today we got the call. At last week's appointment with his GI Specialist, we were told that the doctor would like an endoscopy to be done, some biopsies of his esophagus, stomach, and small intestines, and a possible feeding tube switch from a G-tube to a G/J-tube. The Nutritionist said that their office sees the "worst of the worst" and they consider Ambrose to be one of the worst they currently see.
Over the last nine months, we've struggled to find a formula that Ambrose can tolerate. He would vomit after every feed. In December, he was switched over to goat's milk and tolerated it well. He gained weight and, for the first time, took an interest in feeding by mouth. However, the Nutritionist urged us to go back to the formulas, because he said the goat's milk is not considered a proper, whole nutrition. Although we supplemented the goat's milk with the missing nutrients, the protein content is more than recommended and could potentially harm his kidneys. The GI and Nutritionist have ordered numerous formulas for Ambrose, but with each formula he continued to vomit after every feed and refused to take any food by mouth. He's also lost weight with their plan of care. Last week, after another weight loss, there was a heightened concern for his nutrition and hydration. That was when the order was written for him to be admitted to the hospital.
After last week's appointment, we gave him Pedialyte for 24 hours, then reintroduced the goat's milk. He tolerated it well and even began to show interest in oral feeding. Tomorrow we'll have a better idea regarding the plan of care for this hospital stay. We will alternate shifts staying with Ambrose.
Ryan's mom discharged from rehab a few weeks ago. She has been receiving nursing and therapies in her home. She has been to the Oncologist and received the results from some scans done last week. The MRI showed five spots on her brain and also cancer around her lungs. In the last two months she's been told the cancer was in various places. After many tests, they have still not pinpointed the primary source.
All the other boys are doing well. Charlie is very close to walking. He's really good at sneaking up the stairs. Josef is starting his terrible threes a couple months early. The other day, after asking him to go get his pajamas from his room, he said, "Why do I have to do everything?!" Of course, we know which brother he learned that phrase from....or maybe it was from Gina. Ambrose started crawling a few weeks ago, despite the pelvic brace, feeding tube, and being tethered to the oxygen tank. John Paul tested for Kindergarten this week. On Thursday, April 29th, we will celebrate his 5th birthday! He's been counting down the weeks and days.
We'll try to update as much as we can with Ambrose's status.
Ryan and Gina
Subscribe to:
Post Comments (Atom)
We shall storm heaven with prayers for all of your!
ReplyDeleteThe Golonkas, XCP family
I'm a former student of "Miss Metzger" and I am happy to see that you two have created a loving, flourishing family!
ReplyDeleteI hope Ambrose's situation improves and thank you for sharing your experience. Your family is in my thoughts and heart.
(When I was one of MM's students, she cracked down on students who plagiarized internet essays as their own and caused quite a stir; I really respected that!)
In storming heaven, we'll be praying for the intercession of Pope John Paul II:
ReplyDeleteO Holy Trinity,
we thank you for having given to the Church
Pope John Paul II,
and for having made him shine with your fatherly tenderness,
the glory of the Cross of Christ and the splendor of the Spirit of love
He, trusting completely in your infinite mercy
and in the maternal intercession of Mary, has shown himself
in the likeness of Jesus the Good Shepherd
and has pointed out to us holiness
as the path to reach eternal communion with You.
Grant us, through his intercession,
according to your will, the grace that we implore,
in the hope that he will soon be numbered among your saints.
Amen.
The G's
I am sorry to hear about Ambrose not thriving. I will pray that if there is any anatomical type of problem that it will be found and corrected, and that you will get Ambrose back home soon and find peace in feeding him foods that he can digest and not throw up. He was doing soo well the last time I saw him....enjoying a variety of fruits, veges and cereals,gaining weight and NOT throwing up. Every good and perfect thing comes from the Father above... goat milk is the only milk mentioned in the Bible..God provides all we need for physical and spiritual growth...it is our industrialized society that has marketed plastic and harmful foods like baby formulas to feed the masses. I don't understand how taking away a food that was well recieved and tolerated balances against one that causes a baby to throw up constantly and lose all interest in food. How can it be that the supposition that he might get too much protein, and therefor get kidney problems (very doubtful) weigh against the reality that the little guy is being tormented at every feed and now ends up losing weight and being dehydrated. You should be angry with the doctors for such poor advice. There are plenty of healthy people that are completely intolerant to cow products, and soy is rarely tolerated by adults, let alone the immature digestive tracts of babies. Sometimes in an effort to please others we lose track of our own intuition and Godly wisdom. Ambrose has communicated in every way he possibly can what his needs are...please listen to the wisdom of the body that God created for that precious baby.
ReplyDelete