**The adventures of Avery continue**
Updates...For June 28^th to July 6^th....

YAY...this means I am actually up to date on the updates....Phewwww!!
Now to keep updating.....

"Lots going on but not a lot a happening....if that makes any sense at all"

Much of the same continues......with vitals up and down and feeds slowly moving forward. An IV was put in place the beginning of this week, and I was so thankful that it went in the first shot...Praise God!! Concerns of dehydration were part of their reasoning, but I was not really convinced he was dehydrated. He was clearly not getting enough nutrition, or fluids to keep him hydrated. Avery was to have an MRI with sedation and intubation on Tuesday, which went very well. This IV lasted about 5 days which was Awesome!!!
I have not received the full report from the MRI, but my understanding is that it was more or less unchanged;with no new infarcts!
Avery started on a medication last Monday to help with motility issues, neurology gave the go a head. At first he seemed to have a little less gaging /retching/coughing.....ect.. ect....

One of his seizure medications have been decreased, because we think it is an attributing factor in his increased oral secretions. He has not had any of the side effects from this new med that we were really concerned about and our hope is that it continues....

Always keeping to mind that ...."My(Our) Hope comes from HIM ---Psalm 62:5.es.

Seizures are somewhat increased,discussions of new seizure medications have been taken place.....I have shared my thoughts and concerns in regards to many of the suggested medications, the epilepsy service doctor was going to talk to Avery's own doctors and get back to us . Avery's actual epilepsy specialist came in at the end of the week and discussed further with us about their treatment options and was planning to speak to the CCS team(Coordinated Care Service ) in regards to this and also find out what their plan was with moving forward regarding his feeding /motility issues.
Back on to the issues on the GI front (feeding intolerances), as I mentioned a medication was started during this past week....as the week went on, still no signs of concerning side effects, however we had increased issues with retching/gaging/coughing ..ect..ect..which is an indication he is not doing well tolerating the feeds. As of Saturday we have stopped moving the feeds forward because of his intolerance's. The above medication is scheduled to increase today (7/6/09).Tylenol is still being administered every 4 or so hours,for discomfort.

Ohh and on a side note Avery has started to cut his first 2 teeth...ohhh boy what fun...so we know that this adding to his irritability/and some increased drooling/secretions..that's what happens when you turn ONE!

Discussions for a Nissen Fundoplication have been talked about last week although they had really hoped to hold off as long as possible, but surgery has been consulted. This is a n area that I am really seeking discernment from God, this surgery for a kiddo with severe neurological impairments could really go both ways, it could help tremendously or make things much much worse;due to Avery likely being on seizure medications ongoing, we know that these medications cause more issues with motility issues;therefore increased reflux and higher chances continued aspersions. When considering any treatments for Avery there is often more than one thing to consider.....Avery's quality of life NO matter what that is.... is “Top Priority” to Joe and I ... we hold close that God knows what the plans should be for our son....we just need to be discerning!

"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future----Jer 29:11

Another feeding treatment that has been kinda danced around is what you call ...Total Parenteral Nutrition (TPN), a method of administering food intravenous and therefore receiving the nutrition he needed(a central line would once again have to be placed ), which has it's own significant risks and benefits. We so don't want to go down that route. Over the weekend one of our primary nurses has started the process for a team meeting to take place, so ALL these things can be discussed with all teams involved in Avery's care! As of this morning Below is a little information about the Fundoliction.

The Fundoplication is a surgery done to control Gastroesophageal Reflux Disease(GERD). This condition if left untreated can cause a variety of complications including esophageal cancer and lung damage. Most reflux is controllable by the use of medications but occasionally the medications don’t work or just aren’t enough. When this is the case, the doctors have to turn to surgery. Here is a description of what happens in the surgery.
The "fundus" (hence the term fundoplication) of the stomach (top portion of the stomach) is wrapped around the back of the esophagus until it is once again in front. The portion of the fundus that is now on the right side of the esophagus is sutured to the portion on the left side to keep the wrap in place. When completed, the fundoplication resembles a buttoned shirt collar. The collar is the fundus wrap and the neck represents the esophagus inside the wrap. This has the effect of creating a one-way valve in the esophagus to allow food to pass into the stomach, but prevent stomach acid from flowing into the esophagus and thus prevent GERD. If the child also has a hiatal hernia this will be repaired at the same time.

I don't think it is coincidental that my Scripture verse for today was ...

“We do not know what to do,but our eyes are upon you---2 Chronicles 20:12”