Friday, February 25, 2011

Lookin' Good

Little man is now 12lbs 7oz. He is making up for lost time! Will did have an EEG this week. They will not get the results until next week. The Doctors continue to be happy with his progress. If the EEG is normal, Will should be able to stop the anti-seizure meds that he takes.

Wednesday, February 16, 2011

'Lil Snot Nose

Well, the boy has a cold. He woke up all stuffed up this morning. So, after a little road trip to see the Doctor and be sure everything was OK, he's chillin' at home. Please pray that Will is able to get over this quickly and it does not turn in to anything more serious.

It's A Great Day In The Neighborhood!

Will had his check-up in Kalamazoo yesterday with the GI surgeon. The surgeon was very pleased with Will's progress. He is gaining weight and for the most part is a happy 'lil guy. He is starting to suck on a pacifier (can I hear a collective "yes!"). That is the first step in his therapy process for learning to suck and swallow. Once he is comfortable with the pacifier, they will start putting a few drops of formula on the pacifier. Will's reflexive reaction when something is in his mouth is to try to push it out. Most of his first two months of life have been spent in hospitals and anytime he had something in his mouth it was usually because someone was trying to shove a tube down his throat. So, he will need time to overcome that response. Will meets with a physical therapist and occupational therapist regularly. It is normal for babies who have had heart surgery to have very weak upper body muscle strength. So, he will need to build his strength so that as he is learning to suck he will not tire so easily.

Thanks for continuing to pray for the Arny family as they adjust to Will's medical needs and establish a normal family routine.

Thursday, February 10, 2011

We're Outta Here!

Time to blow this joint. On the road for home! Will has done excellent today. He is already tolerating the feedings that they planned to start in two weeks. While we are very grateful for everything Bronson has done, it is definitely time to move on! Look out Coloma.....we're baaaack!

Wednesday, February 9, 2011

Answered Prayers!

Just so y'all know, Will's surgery yesterday was a tremendous answer to prayer! Thanks so much to all of you who have been so faithfully praying! The Doctor said it was really a "fluke" that they found the pyloric stenosis during the surgery. We just know that fluke is a biblical term for "our God is good, really good". Had they not found that when they did, Will likely would have been in some big trouble by next week in spite of the G tube and stomach wrap being completed successfully. In hindsight, we can all see now that Will did have all the classic symptoms of pyloric stenosis. However, the Doctors were not even looking at that since they were looking at the GI issues as somehow being related to Will's heart surgery. Some of them may have been since he had so much going on at once. But, the pyloric stenosis was something altogether different.

Will is recovering at Bronson. They are working him up to normal feeding amounts and then are looking at a little road trip home in the next few days.

Tuesday, February 8, 2011

All Fixed Up!

The little man should be all fixed up now. Surgery went well although much longer than expected due to the extra things that had to be done. Please pray that Will's recovery continues to go smoothly.

Little Guy Update

Will is almost out of surgery. Here's the deal. During Will's surgery, they found a pyloric stenosis (inquiring minds can google that!). Basically, the opening from the stomach to the intestines was too small not allowing food to properly pass from the stomach to the intestines. That was fixed as well as the G tube put in and the stomach wrap procedure. So, the little guy had his flapper between his esophagus and stomach stuck open and the opening from the stomach to the intestines closed off. Guess where all the food was going?! It is amazing the he was able to even sustain his birth weight much less gain anything. Hopefully, the right openings will be open and the ones that should close will now close. This should allow Will to properly digest food and start to work on sucking and swallowing. Eating has been miserable for the little guy so now he can start to enjoy one of life's simple pleasures - good food!

Sunday, February 6, 2011

Grow, Baby, Grow!

Will is finally gaining some weight. In addition to the GI bleeding, he has been unable to keep most of his food down. So, that means he has not gained much weight since birth. Well, several things have been done to help him keep more of his food down. Will is on a special prescription formula, his feedings are through an NG tube that goes through his nose direct to his stomach, the feedings are given very slowly (over 2 hrs. or so), he is on prescription antacids to help minimize the reflux and he is kept propped up at a 45 degree angle all the time. The test that was done last week showed without question that Will does need the stomach "wrap" procedure. This surgery will be done on Tuesday (not sure of time yet) when the G tube is put in. During the procedure they do some funky twist thing to the stomach to make the opening of the esophagus smaller. This combined with getting the NG tube out of there should allow the epiglottis to function more normally and close like it should keeping the food in the stomach where it belongs. Whewwww.....and once all that is done, Will's next big job is learning how to suck and swallow! Poor little guy has his work cut out for him. Most babies have the G tube until they are 6 to 12 months old. Let's pray that Will is a quick study and can get rid of that thing ahead of schedule!

Friday, February 4, 2011

Surgery scheduled

Will is scheduled for surgery next Tuesday. We know that he will get his G tube at that time, but are still waiting for additional test results to know what else may be done.

Happy Weekend Y'all!

Tuesday, February 1, 2011

So, here's the latest...

Will has been taken off the antibiotics that were started a few days ago. They were really upsetting his already fragile GI system. The Doctors have diagnosed him with colitis. We still aren't sure of what caused the colitis or the whys. They are giving him his formula very slowly now hoping that he will be able to keep more of it down. That means he is on a continuous feed which is not what they want for long term, but is what has to be done for now. They are also evaluating whether or not a stomach "wrap" procedure will need to be done. If I understand it correctly, the purpose of that is to make the esophagus smaller to help remedy the reflux and keep his food down. If that procedure is needed, it will be done at the same time the G tube procedure is done. We know that a G tube will be put in. The question is whether the stomach procedure will be done at the same time. Since both are surgery procedures that require anesthesia, if both are needed, it is best to do them at the same time. So, for now, the NG tube stays in until other decisions are made. Once the G tube is in place, Will will likely be sent home to start PT and OT to work on learning to suck and swallow. There is a window of opportunity after babies are born where they do suck and swallow on reflex. Due to Will's heart surgery, he was not able to feed during that time and that window was missed. So, for him, sucking and swallowing is a skill that will have to be taught. His little body is not able to accomplish that at this time. That can be a rather long and sometimes frustrating process. So, please continue to pray for Connie and Al. Will did so well with his heart surgery and the Arny family was so anxious to all be home together and establish a normal family life. This extra little complication has been difficult and frustrating to say the least. Pray for CJ and Lyndsey as they are adjusting to being apart from the parents quite a bit during this time.