Surgery on Wednesday Afternoon

We discussed with Elias' surgeon today what the plan for him should be. After careful consideration we agree and will move forward. With the many failed extubations we have been pushed into a corner with not many options to escape. So after deliberating the potentials, pros, cons, and draw backs it appears our best course of action is to do a tracheostomy. This decision was not one that was made by the doctors very lightly. Elias is much smaller than they really like to perform this surgery, so there is the possibility it will not work. However, this is only a slight chance. Their main concern is trying to create a safe but manageable airway for Elias. Most of all to get everything out of his face and mouth to make him a little more comfortable. To leave him intubated for much longer is not really a safe option for Elias anymore. He is extubating himself on a regular basis (he did it again last night) and each time he must be reintubated. That causes irritation, swelling, and potential a life threatening situation should they have a difficult time getting him intubated in a timely matter. There are many more options available for him in terms of respiratory therapy. He will be hooked to a vent still to start, but can be "tested" without the need to extubate. It is as simple as connecting and disconnecting. Si Pap is another option if they feel it necessary. The ultimate goal will be to wean him off full time support or possibly only getting part time support with the Trach tube. This is not the end solution to Elias' airway issue because the Tracheomalacia is not convincingly present. It is still more the granulation tissue at the bottom of the airway and the narrowing in the bottom of the trachea. The problem is Elias needs to kind of grow out of this and that takes more time than they want to leave him intubated for. With the tracheostomy it is as mentioned a safer more accessible airway to allow him that time. This is a reversible procedure and Elias is likely to have it for one to two years. The downside to that is it appears he will not be able to make sounds, cry, or speak while he is trached (there will be faint sounds similar to what he has with the intubation). As the surgeon stated this is a big draw back for babies this young and causes obvious developmental delays in that area. This is why they do not like to resort to this unless absolutely necessary. There will be speech therapy to help once the trach is removed.

Still with us? We have only just begun....

They also want to go ahead and do the Gastrostomy. We will refer to this as the G-tube going forward. The main concern here is we have not "tested the stomach" with feeds since the major fiasco back the end of May when they thought he aspirated his feeds or had a reflux issue. Well, practically all children with TracheoEsophageal fistula with esophageal atresia have some degree of reflux problem. The severity varies from child to child. So this will be a brave venture that will require close management. They do make tubes with jejunal connections (past stomach in digestive system which is where Elias' feeding tube is now placed) the issue here again is his size being too small.

Next they also want to do another Bronchoscopy while they have him in the Operating Room. The surgeon feels like the stricture in his esophagus may be aggressively closing. He wants to view it again and do another esophageal dilation. He is thinking of placing a silk suture line through his esophagus and through the mouth to act like "bread crumbs leading you back" should the stricture become so tight nothing can pass. He thinks that Elias will have to undergo a series of dilations for a little while, possibly as often as every three weeks. Again something that will be closely managed.

So the surgery is planned to go in this order:

1. Bronchoscopy
2. Esophageal Dilation
3. Gastrostomy
4. tracheostomy

Quite a line-up for our little fighter. He is certainly in for a long rough day. That is probably the most difficult thing, seeing how much he has endured thus far and knowing that there is even more surgeries he will have to go through over the next few years.

So How Much Longer Will He Be In The NICU?

Probably the most deflating part of the discussion was "the time line." It is certainly very difficult for them to say, but they expect about 4-6 weeks of recovery of the Trach & G-tube. After that it is likely that Elias will be sent to another hospital for the transition home. That is expected to be another 2-3 weeks. As usual this is if everything is perfect with no issues, problems, set backs, etc. This puts us in the mid-September range....ugh!!! That was difficult to swallow. That is all Michael wants for his birthday now, for Elias to be home. Please continue to keep Elias in your thoughts and prayers, particularly on Wednesday. I'm sure Wednesday will be a very long day at the hospital, but we will give mobile updates as we can. One final positive note...we will all get to see Elias' face free of obstruction for the first time.