Almost 2 years later.

It has almost been 2 years ago that our little Micah was so sick. He will be turning 2 years-old in October. So how is life 2 years later? Well, Micah just loves to eat everything. He is growing up to be such an amazing loving child. He now has a new sister who is 4 months old and he just loves her. Micah also loves his big brother Josiah. You would never know that Micah at one point was so sick just by watching him play and living life today. God truly is great. Again we are so thankful for Erlanger's T.C. Thompson Children's Hospital and Dr. Devoid.

Doing well...

It's been awhile since we updated the blog and we wanted to update you on our little Micah. It's hard to believe that he was only 8 weeks old when all this started. Micah will be 7 months old this Saturday. He is growing and starting to meet his developmental milestones. Micah is developing such a cute personality. He is currently drinking Pregestimil milk and is now taking stage 1 baby foods which he cannot get enough of. Our other son Josiah has been such a good big brother to Micah. We just love our sons so much and things are now just getting "back to normal" which equals a less stressful life.

Sink or Swim

On the 3rd of February Micah had his follow up doctor visit with his GI doctor. The feeding tube that went into his nose was removed and he was placed on strict bottle feeds. Our doctor told us that it would be sick or swim. Either he would do well drinking strictly from the bottle or he would need his tube put back in. We thank God for how awesome Micah has done. He has had no trouble drinking from the bottle and he has been putting on weight. Micah continues to do well and he has even been on Pregestimil a milk that requires that his gut works harder to break down the milk. We are thoroughly enjoying him at home with a relatively normal life, although we are still very protective and cautious with him. His big brother absolutely loves him and always wants to watch tv and play with him. Thank you again for all your thoughts and prayers and for being with us during what was a very difficult time. Your support and concern meant a lot to our family.

Doing well...

Micah continues to progress very nicely. He had an appointment this week with his GI doctor and had a good report. Micah is now taking Neocate milk by mouth at 9am, 12pm, 3pm, 6pm, and 9pm. We just started feeding him by mouth with this schedule and so far he averages about 25mL per feeding. He is still receiving tube feeds via his nasal jejnum tube (which he had replaced this past Tuesday). Except his tube feeding times are from 6pm until 10am. This feeding schedule is supposed to stimulate his hunger drive and encourage him to eat more by mouth. We just love having him home and are excited that he is improving so nicely. Micah does still have a way to go before he is back to "normal." Josiah loves Micah at home and has been such a great big brother. And I just love having my family back home.

A Happy New Year

So far Micah has been home five days now and he is doing well. He is still receiving IV TPN but we are in the process of weaning it off and we are also increasing his nasal jejunum tube feeds everyday. So far he has been able to tolerate the increases of his tube feeds (Neocate Milk) which are currently up to 30mL/hour. His stools are looking normal again. We are all happy to be home. Josiah just loves his little brother. It has been a bit of an adjustment getting a schedule set up to give Micah his medications, start his IV TPN (which he gets at night for 12 hours a day) and his tube feeds which run 24 hours a day. Micah has a follow up apointment with his GI doctor this Tuesday. We are over the major hurdles but we still have a way to go. It has been a great new year so far and we are excited to see what the new year will bring. We wish and pray that you all have a Happy New Year.

We are going Home!!!!

Well Micah has been admitted for 32 days and we finally get to go home today. Hard to believe that we are actually being discharged from the hospital. Micah is still receiving IV TPN and will still have his nasal jejunum tube feedings. The plan is to wean off the IV TPN and continue the tube feeds. I'm not sure how long that process will take. We have a home health nurse who will visit with Micah at home. Home health just delivered an IV pump and a feeding pump. I'll take a picture and post it once it's all set up. It will take up to six months for Micah's intestine to completely heal. So far he has been able to avoid any central line infections. Hopefully he does not have any problems with his central line otherwise we will be back at T.C. Thompsons. We are so thankful to our friends, family and Juan's (My) co-workers (Erlanger's Trauma Service, Adult ER and CDU) who supplied us with food and drinks everyday. Without them this admission would have been extremely difficult. They have all been such a blessing to my wife (Patricia) and especially Micah. We also want to especially thank Dr. Devoid (Pediatric GI doctor) he was so wonderful to us and Micah and did such an excellent job. The nurses at T.C. Thompsons were wonderful as well. They took such good care of our son. So we are excited that we are home but at the same time scared. We will be setting up and giving his IV TPN and Tubefeeds. Good thing Patricia and I are nurses. Yea we are Home!!!!!!!

Merry Christmas

Merry Christmas. Today we were blessed to spend Christmas together as a family. Josiah and I spent the night with Patricia and Micah. We awoke early this morning at 6:45am to begin our Christmas celebration. We had a great time opening presents and playing with lots of toys. Micah had a minor set back with 2 bouts of vomiting but he seems to be doing fine today. He just smiles when you talk to him and just falls asleep when we hold him. His doctors are watching him closely and hopefully Micah doesn't have any more vomiting. Our prayer requests for today are that Micah not have any more vomiting and he continues to heal. We hope you all have a wonderful Christmas. Remembering and celebrating the birth of Jesus Christ.

1 John 5:1 Everyone who believes that Jesus is the Christ is born of God, and everyone who loves the father loves his child as well.

Day number 22.

It's hard to believe that Micah has been admitted for 22 days. When Micah was first admitted he was so sick but he has progressed so nicely. His GI doctor is starting to decrease his IV TPN dose and are slowly increasing his nasal jejunum tube feeds. He is up to 13mL/hour on the tube feedings. We were told that he may develop an osmotic diarrhea as the rate of his tube feeds are increased. But so far Micah is doing well. I believe we are looking at another 3 weeks in the hospital and hopefully if all goes well, we will be home early January. Today Josiah and I paid mommy and Micah a visit and had lots of fun. Josiah and I crawled into the crib to spend some time with Micah.

Cheerful news

We were told by our GI doctor that at some point things will get kind of boring. And I think we have reached that point (which is a good thing). It seems that the secretory process of his "slick gut syndrome" has slowed greatly. He appears to be tolerating the tube feeds via his nasal jejunum tube and his stools appear to be turning "back to normal." Micah looks healthy and chubby. Today Hannah came by and he just smiled and smiled at her. Hopefully, Micah continues on his path to healing. Our love for him continues to grow and so does our thanks for our friends and family.

Proverbs 15:30 A cheerful look brings joy to the heart, and good news gives health to the bones.

Maybe we have turned the corner...

So today is Dec 14th and we have been admitted now for 15 days. Micah's stooling was suppossed to have reduced around day 4 or 5 but we are on a little different timetable. Just the last few days have we seen a marked decrease in stool. Yesterday he only had around 320cc for the day, and while that is still alot, his poop looks more like poop and it is a huge improvement from his record day of 1200cc. He is becoming much more alert and playful and loves to smile at his mobiles and his momma of course :-) He currently looks a little bit like a sumo wrestler as he is retaining ALOT of fluid. I will try to get a picture of his huge cheeks and his solid looking body to add to the post but I don't know how so we will have to wait for my handy husband :-) The doctor ordered some Lasix for him today so hopefully he will become a peeing machine.... Well, today is Monday the 15th and I am finally getting around to finishing the post. Dr. Devoid came in today, he was off this weekend, and said Micah is definitely improving. He said his swollen cheeks are due to fat not fluid. He said that he has been giving him such a large amount of calories that he should be beefing up and developing a buddah belly. He stopped the sandostatin iv med, placed him on full strength formula at almost one teaspoon an hour, and is reducing the calories going in his TPN. So that is good news that we thank God for. He also said he would have us out of here by Jan 1st. What an encouragement it was to hear that news today. Also, Juan completes this semester of schooling today. He is taking his Chemistry final as I type. He has A's in all his other subjects - I am so proud :-)
juan & I want to thank each of you for all you have done for us. We covet your prayers on behalf of our family and thank you all for the calls and food you have provided. What a blessing you have been to us. Please don't take our lack of thank you cards be a reflection of our gratitude - we are so very thankful that God has used you to bless us. We pray that he returns to you 10 fold.
So our journey continues... God is definitely at work in our lives! Patricia.

Daddy's 2nd day

Today is my second day & night with Micah. Patricia was able to sleep in this morning at home, spend some time with Josiah, and had a chance to do some Christmas shopping today. Micah and I had an uneventful day which is good. No news is sometimes good news. It seems his output has decreased a little bit, I believe his output was slightly less than 300mL for a 12 hour period. His tube feeds are now running at 3mL/hour and he seems to be tolerating it well. His GI doctor will gradually increase the tube feeds depending on how well his intestines tolerate the (neocate) tube feeding. So it seems that little Micah maybe heading towards healing. There is a chance that the tube feeds can irritate his intestines and we would have to start from square one, but lets hope & pray that doesn't happen.

Psalm 39:7 "But now, Lord, what do I look for? My hope is in you."

Daddy's turn...

Well, today I get to stay with Micah for the night. As Patricia has been here day & night since his admission. She is over due for a full night's sleep. Micah seems to be doing well, although he put out 362mL for a 12 hour period. His GI doctor restarted the neocate tube feedings via his nasal jejunum tube at a rate of 2mL/hour. He is still receiving TPN & IV electrolyte replacements. Hopefully, he will tolerate his tube feedings and not start re-dumping. He loves to be held all the time and is fussy when you don't hold him. But that's ok because mommy and daddy don't mind. Family & friends have been very supportive. Without them this would be even harder.

2 Peter 1:7 "and to godliness, brotherly kindness; and to brotherly kindness, love."

A visit from Josiah

Well, last night Patricia was up all night with baby Micah. She thinks he may be feeling a little better because he cried for what she thought was from being hungry. He seems to have a little more energy and looks pretty good. He smiled and cooed with us today. He does still have the dumping (diarrhea) effect but it has decreased some. His total output today for a 12 hour period was around 365mL. He remains on the TPN and is still receiving IV fluid electrolyte replacements. His blood sugar is running a bit high, most likely from the Sandostatin, as that is one of the side effects of that medication. Mommy gave him his first bath since he was admitted. Mommy says he was "stinky." No word on any of the biopsies that were taken from his sigmoidoscopy. Tomorrow, his doctors are going to send special tests to California to check for an Autoimmune assay. His GI doctor is concerned that the "Slick Gut Syndrome" may have triggered an Autoimmune response called "Autoimmune Enteropathy." Please pray hard that he does not have this "autoimmune enteropathy" as that is far more complicated and a chronic (life time) condition. Aunt Kathy brought Josiah today for a visit. He and his mommy had fun playing together. Aunt Kathy has been such a blessing as she is helping greatly with Josiah and keeping our house running. We are continuously leaning on the Lord.

Resting without pain

Last night was a bit rough. Micah had quite a bit of pain after his sigmoidoscopy but we gave him a couple doses of Morphine. The morphine coupled with TLC seemed to settle him down. I also got an excuse to sleep cuddled up with him all night long. Today he has done better. He has not acted like he is in pain and has rested in his crib for a couple of hours this afternoon. His stool output has decreased over the past 2 days - it is still alot over 150cc/kg but hopefully with the new meds they have started him on (Sandostatin and Nexium)he will really improve.... My day has continued to improve, he is still pooping massive amounts > 430cc's this 12 hour shift, but he has been awake and alert. He has cooed to me and tried to talk and smile. He hasn't talked in over 1 week. Well, the Cowboy's just lost to the Steeler's - Juan is very excited and I am sad - and I am going to rest.

a hard day...Day 8

Micah is still having large amounts of diarrhea. He reached 300ml/kg of output for a 24 hour period. Today was a busy day. Micah had a CT scan of his abdomen and had to go back to the OR for a sigmoidoscopy. Unfortunately, Micah is not improving yet. Patricia is such a good mommy and really has not left his bedside except for the day that I made her go home. He is still receiving IV TPN and IV fluid replacements. His GI doctors are really great and so are his nurses. God is forever faithful and His hands are upon him.

Micah and daddy

A very concerned daddy, who is scared...
and is praying lots.

Micah's first day after surgery

Here is a picture of Micah with his Central line and nasal jejunum tube placed to gravity suction.

Micah's first day after surgery

Micah was taken to surgery to have a
central line placed and a nasal jejunum tube placed.

Micah's Admission to TC Thompsons with Slick Gut Syndrome

I just wanted to give everyone an update on little Micah's status. Micah has been admitted to TC Thompson for a rare disease process called "slick gut syndrome" also known as Intractable diarrhea in infancy. His illness was set off by the Milk protein allergy that he has and was exacerbated by a gastroenteritis he acquired. This affected his small intestine, which eroded the microvilli of the small intestine which are essential for absorption of intestinal secretions and nutrients and also caused his small bowel to become inflamed. This causes a dumping effect of the intestinal secretions which cause dehydration and mal-absorption of nutrients. Without intervention, babies with this disease process would die from dehydration and malnutrition. Micah currently has a central line placed for TPN and electrolyte replacements. He also received a unit of PRBCs for the anemia that has occurred due to this process. He has also been running fevers so he is on some antibiotics, good thing is that so far his cultures have come back negative. He unfortunately is still dumping up to 200mL per Kilo from his diarrhea. We were told to expect to be here for the next 4 weeks and if all goes well it will take up to 4 to 6 months for his small intestine to completely heal. We were also told to expect at some point for Micah to become bacterimic at some point due to the disruption of his small intestine that will allow bacteria to flourish. Kind of scary to know that sepsis is coming to town. Anyway, he still is maintaining at the same level and has not yet began to improve, although he looks better than the first day. I just want to say that I thank you all for your support and for being supportive of Patricia too. I just ask that you continue to pray for little Micah.