Update: Ambrose & Procedures

Ambrose returned well from his Endoscopy procedure yesterday afternoon. His upper GI tract (esophagus, stomach and duodenum) was viewed and appeared normal. He does have some mild bruising in his stomach, which is consistent with vomiting, and not a concern. He came out of anesthesia with no problems. The doctor had to inflate his GI tract a little with air in order to get the images, so he was a little distended and very cranky for a little while.



Overall, he's been a very happy little boy in the hospital. He spends most of his waking hours playing and rough housing with Daddy, who has been staying with Ambrose most of the day and every night.


Speaking of rough housing, all of Ambrose's big brothers came in for a quick visit last night. Charlie and Ambrose were very excited to see each other and got in to a squealing match. They also waved "bye-bye" to each other. Ambrose had hoped to get a handful of Charlie's mullet while he was here, but Charlie didn't give him an opportunity.


This morning (Friday 4/30) Ambrose had two procedures done. The first was an Upper GI, where Barium was pushed into his stomach through his G-tube. The procedure was done by a Radiologist, who was able to track the Barium through Ambrose's stomach to his small intestines. The results could be seen on a large monitor and showed no abnormalities found in his digestion. Following that procedure, he had a Modified Barium Swallow Study. This test involved Ambrose being seated in a chair next to an x-ray machine. There were 6 different cups set out with Barium of different consistencies. He was then spoon-fed a small amount from each cup. We were able to watch and see if he aspirated or if he swallowed correctly. It revealed that he is able to swallow "spoon thick" or "honey paste" liquids, but not standard liquids. This is the same results as his last MBS, conducted in February, so he hasn't improved much, but he hasn't gotten worse either. He is scheduled for an outpatient swallow clinic next month, and will probably begin intensive feeding therapy after that.


This afternoon, Ambrose's G tube Mic-Key button was exchanged for a low profile G-J button. It uses the same surgical stoma, so this procedure did not require surgery or even anesthesia, only an x-ray afterward to confirm that the tube was properly placed. The J tube snakes through the stomach and duodenum into the second part of the small intestine: the jejunum. This equipment is a new design, so I wasn't able to find an image online (we'll apparently be the first to upload), but it looks pretty much like the former, but with an additional port. The new button enables us to feed Ambrose either into his stomach or his jejunum. In fact he's already trying his first (and hopefully his last) elemental formula, EleCare. If he tolerates it for a couple of days, he can go home. Let's keep our fingers crossed, we don't want to have to go through a whole series of formula trials like before. Once he's fat and healthy, we hope that the doctors will be able to find the root of his problem so we can treat more than just his symptoms.





Also, the results of his biopsies came back mostly fine. There is some acid reflux damage to his esophagus, so the GI doc has ordered Prevacid.


We'd also like to clear something up. Someone accused us of not doing what is best for Ambrose and that "in an effort to please others we lost track of our own intuition and Godly wisdom." This is a very frustrating and arrogant comment. Let us assure you that we are always and only trying to do what is best for our son. This is the reason he's had all the tests done, we've moved on to our second GI specialist, and why we're attempting to stay on top of all his feeding issues. What good would it do us to try and please others if it would harm our little boy? While it's true that he tolerates the goat's milk well, it is lacking key nutrients that will help the growth of his head and the development of his brain. It doesn't provide him with enough calories to gain the weight that he needs to maintain a steady growth curve. It's probably easier to digest than formula precisely because it's half the strength of formula. Right now we need to beef him up fast and the only effective way to do that is with formula. And if the stomach won't tolerate it, we'll have to bypass it to the intestines. But the bottom line is: that boy needs to put on some serious weight, ASAP. We've also discovered that the protein content in goat's milk is almost 10x the maximum that he should have at his size. It would not be prudent for us to take a chance on damaging his kidneys (the risk is high, due to his being born three months early). We are not willing to allow this to happen. Please understand that we are trying to do everything possible to give our child a chance to have a normal life and to learn how to eat healthily. We are always praying about the decisions and seeking to do God's Will for our family. If you have grave concerns on how we are treating Ambrose, then you can call or email us directly.

Thanks again for all the prayers and we'll let you know when we discharge home or if anything exciting happens first.

Ambrose in Hospital

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

Today Myra was transferred back to the rehabilitation facility. She is looking forward to resuming her therapies.

Many many things have happened in the last week. My mom has been doing great in the ICU. She has her ups and downs, but, overall, she's beginning to get her strength back. A few days back she had a chest tube inserted to drain fluid. They first drained 1200cc and then another 1200cc the next day. Suction was then added to remove the air that had gathered around her left lung. Thursday night her pulmonologist did a pleurodesis on her lung at her bedside. It was similar to what was done on her right lung, but without the need to be in the operating room. Also, she had a port placed in her chest to receive meds and, eventually, to receive chemotherapy.

Today I visited with her and she was in great spirits. She was even weaned off the oxygen! Amazing turnaround. She's been doing physical therapy in the ICU as well! Soon she may return to the Rehab facility, which she prefers to the hospital. The oncologist would like to begin treatment on the cancer as soon as my mom's strong enough. It was also mentioned that the source of the cancer may be pointing to the pancreas and not to the breast as originally thought.

We continue to pray for her recovery and hope she continues to get stronger. Thanks again for the wonderful outreach and concern for her. Keep praying!

Ryan

P.S. All the boys are doing well. Colds are almost gone. Charlie has a huge shiner on his forehead. Ambrose is trying to crawl. Josef is afraid of the Chick-fil-A cow. John Paul continues to be the inquisitive one with all the questions. He'll be five next month! The two big boys can really make those little boys laugh!

Happy Boys!

Over the weekend, Myra had many visitors from near and far, out-of-state and overseas (Spain). We're not sure if it's related to the support from her visitors or from all the prayers, but she seems to have rallied. Myra is in good spirits and has a lot more energy. She was moved from the ICU to Palliative care earlier this week, and last night was moved to a rehabilitation facility. She is eating, even feeding herself and doing some physical therapy; rolling over and sitting on the edge of the bed, etc. Her overall demeanor is very positive. No one really has an explanation.

Last week she was given 2-4 days to live. They disconnected the monitors, discharged the high-powered antibiotics, and pulled the chest tube. After the grim report the doctors gave us last week, we had started to do research on funeral arrangements. The doctors did not seem to think she would make it through the weekend. We then met with the Palliative care nurse to arrange a Hospice transition. But, after a night of 5 hours of uninterrupted sleep, she rebounded and started to gain some strength. You could see the change in her eyes. She was no longer being heavily drugged for the pain and was even able to get her smile and humor back. She will now receive three hours of physical therapy every day. She will meet with doctors as needed.

Thanks for the continued concern, support, and prayers.

A biopsy Tuesday showed that Myra has stage 4 cancer in her right lung and is not well enough for the doctors to treat it. She is alternating between a Bi pap machine and high-flow nasal cannula to assist her in breathing. A respirator would be the next step, but in Myra's case, this would be considered extraordinary means, and would only serve to prolong her suffering. Because of this Myra has requested not to be put on a respirator, she also has authorized a "Do Not Resuscitate" order. The doctors say it is day by day now.

Myra is awake and alert and aware of what is happening, and is enjoying her many visitors, including several from out of state and abroad. The hospital has allowed her grandchildren to visit and she enjoyed and appreciated the opportunity to see them.

There is precious little time left and the family appreciates your continued prayers as this is obviously a very difficult time for all of us. Please pray that Myra has a peaceful transition to her heavenly home. God bless you. Thanks again for all the prayers. We greatly appreciate them.

Ryan