Patiently waiting

The past two days have been relatively uneventful, something for which we are very thankful. Here is the latest update.

Sutton has been spiking a fever almost once every 24 hours, but it is easily resolved with a little Tylenol. He has had more secretions from his nose and mouth as well. ENT came in this afternoon and we discussed the possibility of infection since we are post-op day 3. It is a valid concern, but the surgical site isn't red or tender and there are no other signs of possible infection. He has been on a broad spectrum antibiotic since surgery, so the consensus is that we watch and wait. Watch and wait is a perfectly acceptable option from our perspective. If he does have an infection, it is possible that he could go into the OR over the weekend to have the site "washed" to keep it as clean and ideal for surgery as possible. We hope that we will not have to enter the next surgery under less than ideal circumstances, so we ask for prayers that we can continue on a reasonable path of recovery from one surgery in preparation for the next.

Tomorrow the physicians from anesthesia, ENT, plastic surgery and pediatric surgery that will be involved on Monday are having a care conference to discuss their game plan for the esophageal repair. I have already mentioned why the other physicians are involved, so I wanted to clear up why plastic surgery is involved. Pediatric plastic surgeons deal with the tiniest parts of a child's vasculature and, if it is necessary to use a segment of his small intestine or colon, then the plastic surgeon will be responsible for making sure the tissue has a sufficient blood supply once it is used to repair the esophagus. There is no exterior physical issue they are trying to correct.

Also, the drain from the surgical site in his neck is not putting out much fluid. Again, the doctors are not immediately concerned, but because of the (for lack of a better word) loose nature in which they closed up his neck so that they could return to surgery, it is possible there is something that is leaking. I am not sure if they are concerned about the areas where they resected the hygroma or the stitched off esophagus, either way prayers for everything to be sufficiently intact would be greatly appreciated.

Sutton seems to be feeling better and we have a firmer grip on his pain control. He is still breath holding when he doesn't like something. His vent settings are now in what they would consider extubation status, where he is doing all of the work himself and getting just enough assistance from the machine so he doesn't feel like he's breathing through a straw (since he is, in fact, breathing through a straw). That is definitely something that was a concern for us going into this based on his poor extubation in the NICU, but based on this run we are hopeful for extubation next week after surgery.

We have also started nutrition for him. They are using his G button now, though what he is receiving is negligible (one ounce over 6 hours). His feeds will not increase until after surgery for his safety, so they are meeting the rest of his nutritional needs through IV nutrition.

He has also finally begun to move some of the fluid off of his body from Monday and he is looking progressively less puffy. They gave him a one time dose of a diuretic to jump start this on Tuesday, but his kidneys were still pretty sleepy from the procedure Monday and only began to kick in to high gear last night. We are hopeful he will continue on this path and return to his normal size before they have to puff him up again.

Because of these fluid shifts/redistribution from surgery and the overall fluids he is taking in through his PICC line on a daily basis, his hemoglobin was down from yesterday. It is not low enough to meet the blood transfusion threshold and he is otherwise asymptomatic (he is not pale, having difficulty breathing, etc.) so we are taking a watch and wait approach here as well. He will have another set of labs drawn in the morning and his team will assess if a transfusion would be appropriate at that time. If his counts don't rise by at least a point or more he will require a transfusion in order to go into surgery.

We thank all of you for the continued prayers and are hopeful for Monday. We realize that what they are working with is not ideal, but it is not impossible either. Please continue to pray for Sutton's continued recovery and health as well as the physician's at the care conference tomorrow as they use each of their individual talents and abilities to best serve our child.

"Let us hold unswervingly to the hope we profess, for He who promised is faithful." -Hebrews 10:23