Samuel Is HOME!!!

Just a quick update for everyone that Samuel came home from the hospital today!!!! His surg. went well on Wed, and we are adjusting to his new feeding schedule with his feeding tube. If all goes well, Samuel will be able to have some time each day off the feeding pump. This will give him a chance to play, practice rolling and just be a kid without being hooked up to a machine. The doctors said Samuel will probably be on the feeding tube for 3-6 months. During that time, he will continue to receive care from a speech pathologist at home. Due to his condition, his voice box and muscles in his throat/mouth are a bit weaker than they should be. The speech path. assistant will help him to begin speaking and using his muscles. We'll also be seeing a heart/lung dr. to keep an eye on his lungs--the aspiration issues did impact his lungs some, so we'll have to give him breathing treatments for a while. A GI (stomach) dr will also follow him and monitor his progress and feedings. Samuel will still be at increased risk for lung/breathing issues, so we will continue to pray that he stays healthy and out of the hospital, free of breathing problems. Thank you all for all your prayers, calls, messages and gifts. We couldn't get through this time without all of your love. Bless you all!!
Tracy, Jeff, Shahra, & Samuel

Wednesday Update

Hello All Samuel came through surg. and has his G tube. He is doing ok and resting now. He did have some problems with Oxygen stats during the surg. They believe this was due to the anesthesia, but they will be watching him carefully over the next 24 hours to make sure his levels don't drop again. Right now, they are checking his meds and seeing what he will have over the next 24 hours, which will include extra breathing treatments and extra monitoring. They were also unable to secure an IV line, so they will start feeding him using his new G tube in the very near future. That's about all we know for now, looks like we'll be going home Friday if things go ok. Tracy, Jeff, Shahra and Samuel

Tuesday, November 20 something

Hello all-- Not to much to report today. Samuel had his swallow study today, and he didn't do so well. He wasn't able to swallow food that was "thin" or "honey thick" any foods he eats will have to be pudding thick. They aren't sure why he isn't able to swallow more foods at this point. To be sure there isn't anything major wrong, they are going to run a brain scan this evening. This will make sure there aren't any tumors, or developmental problems that we need to address. The RN I spoke to said they do this for everyone who gets a G tube and not to worry. They also did a EKG (heart scan) because his oxygen levels did drop a bit during yesterday's procedure. We'll know the results of both of these test tomorrow, though we aren't to worried about either. Samuel's surg. will be at 1 pm tomorrow, and should be a straight forward G tube placement. If everything goes ok, he'll be in the hospital a couple more days to be sure he has time to heal, etc. We're looking at going home on Friday??? or Saturday?? (no one has actually said these days, but based on what they say about recovery, that is my educated guess). My mom has been staying with Samuel and has learned the ins and outs of our children's hospital. She has even seen the various iron statues of nuns which occupy the halls of the hospital and found her way to the basement cafeteria (not an easy task). That's about all. We got good news that Samuel's friend from the care center "Little M" went home from the hospital today. Samuel and "Little M" had cribs next to each other at the care center in Ethiopia, and "Little M" was in a different hospital for a different problem all week. "Little M's" mom and I decided to take about the kid's black berry privileges for a while...we SWEAR they are conspiring together to worry us all to death :) In any case, "Little M's" homecoming was good news. OK, we'll update you all tomorrow!
Tracy, Jeff, Shahra and Samuel

Samuel to have 2nd Surg. Wednesday

Hello all-- Samuel had a procedure today in which 2 drs. used a scope to look at his lungs and stomach. It showed a normal stomach and digestive tract. The top muscle of the stomach closes pretty well (not perfect, but good enough, this means we can control the spitting up without having to stitch the top of the stomach shut). The lungs and airway show that Samuel does have tracheal malasha (spelling?? his airway is floppy, leading to loud sounds when he breathes and increased risk from aspiration). The airway also showed signs of aspiration, meaning liquid has been getting into the lungs. This was expected. The drs. decided to do the swallow study tomorrow to see how bad the aspiration is, but Samuel will have a G tube put in either way, so he'll have another surg. on Wednesday. For now, they don't think they need to stitch the top of his stomach shut, and they don't think they have to put a tube into the intestine (both of which would have made the procedure much more complicated). so, that's where things are. Samuel is looking at surg/procedure #2 for Wednesday and will be in the hospital until AT LEAST Friday. No much more to say than that. Samuel is in good spirits, though he has an IV in the hand he usually sucks on, so that makes him a bit unhappy. Thanks again for all the prayers, and a HUGE shout out to Erin and Ryan who came and sat with my mom while they did the procedure today and brought lunch and dinner. They ROCK!!! (Jeff and I had to work, so we weren't there until the late afternoon) Thanks again to everyone.
Tracy, Jeff, Shahra and Samuel.

Sunday, Nov. 20 something

Here is the latest:

Samuel IS NOT spitting up! Very good news.

The next step: the Drs. will be doing a scope tomorrow which will look at Samuel's Stomach and lungs. This will see if there are any problems that would indicate he would continue to have feeding problems that would stretch into the next few months. if the scope shows that there are problems, the Drs. will put in the G tube right away. If the doctors don't see any problems, they will not put in the G tube, but instead do a swallow study on Tuesday. The Swallow study will tell them if Samuel still aspirates (swallows fluid into his lungs). If he aspirates, he will have another procedure on Wed. to put the G tube then. If he doesn't aspirate, they will try to keep Samuel on the NG tube (a tube that goes from his nose to stomach rather than all the way to his intestines). The reason this is better than the NJ tube (going to his intestines) is we can replace the NG tube if it falls out. So, to review, below are the possible outcomes we are looking at:

1) Samuel has a scope which shows he will have swallow problems for a few months to come. G tube goes in
2) Samuel has a scope which shows no immediate swallow problems. He gets a swallow study Tuesday.

Tuesday's swallow study:

1) Samuel still aspirates and needs a G tube, which requires another procedure.
2) Samuel doesn't aspirate, and he gets a NG tube, which we can replace at home if it comes out.


So, there are many possible outcomes, each with benefits, drawbacks and risks. I guess we're just praying that this all becomes clear soon.

Thanks
Tracy

The day after November 20 something

Hello all--
We have an update and some specific prayer requests. Samuel was on an NJ tube (tube from his nose to intestine). At this point, the Drs, have pulled this tube back to his stomach, (so it is now an NG tube). The reason they pulled the tube back to the stomach is to see if he can take food in his stomach without spitting up. IF he is able to keep food in his stomach without spitting up, the Drs will be able to do a much LESS invasive surg. to assist him. If he CAN'T, the surg. will be much more extensive. The next 24 hours will tell us alot, and if this goes well, Samuel could have surg. as early as Monday. The surg. will be the insertion of a G tube. This is a "simple" procedure with 2 drs doing a scope to make sure Samuel's organs look good and inserting a tube into his stomach which will be used feed him. Only a small amount of tube will be out of his stomach and no tube will be in his nose any more. If Samuel spits up, he will need the top of his stomach stiched shut for a while OR the tube will have to be snaked down to the small intestine. These are rather extensive procedures, that have bigger risk for complications, require bigger cuts, more recovery etc. We will keep you updated. I (as ministers often do :) have to work all day tomorrow, so I won't be at the hospital at all. Jeff is with Samuel all night and tomorrow. My mom made it safe today and will also be with Samuel and Shahra. We are doing as well as we can, and my mom's arrival is a much needed addition. Thanks to all! Tracy, Jeff, Shahra and Samuel

November 20 something

Hello all Samuel was admitted to the hospital last night. He pulled out his NJ tube on Sat. afternoon, which we had replaced at the ER. Then, Tuesday night he did it again. The Dr. suggested we try to feed him normally, but he is not getting enough liquid and is dehydrated, so we had to take him to the hospital. The Dr. replaced the NJ tube AGAIN for now to rehydrate him, but it appears this tube is not our answer. We will probably be facing surg, to place a tube in his stomach or intestines (directly into his stomach, rather than through the nose). We should know some more this afternoon, My mom is coming to stay with us and help out, so this is a huge relief. I have also had the flu and had been unable to work from Sunday until today, so life is pretty chaotic right now. We so appreciate your prayers,cards, emails, etc. even if we can't get back to you right away. Keep us in prayer.