We suppose with all the positive news the last week or so, we were destined to have that step back. At least this is not too horrible set-back, but one that we were not thrilled to hear... You all get three guesses and the first two do not count...................................................G-Tube!!!
Elias yesterday afternoon, just prior to us getting there, was found in his swing soaking wet. He had been napping in his new favorite place and during that nap about 30 ml's (1 & 1/2 hours worth of feeds) of leakage occurred from the G-tube. Of course because Elias always kicks off his blankets he was freezing. His temperature was 95.5!! He was covered in the leakage from chest to feet and his colostomy bag had fallen off as well. He was given a bath and bundled up and thankfully his temp returned to normal within a few hours. So this tells us that the "plug & play" procedure did not help. It is more about position at this point and we think this kind of seals the deal with any mystery here. The remainder of the evening until we left around 10 PM the leakage was back to minimal. We are awaiting rounds this morning to hear what the plan might be now. While we do not want Elias to go through the procedure again, we are beginning to think there is going to be no other alternative. Our guess is if they do decide to do that, it will be next Wednesday while they have in the OR for the esophagus dilation. He will be under general anesthesia for that anyway, he would just be under a little longer and would avoid the need for another OR visit. Like we said, that is our theory, but we will have to wait and see what the Doctors have to say. We are at a point now where something more proactive must be done. There is more concerns, risks, and problems associated with the leakage, other than the fact the G-tube leaks at irregular intervals.
- The leakage causes him and his clothing to become wet and as with the case yesterday caused his temperature to drop. This increases the likelihood for illness.
- The heavy leakage can at times cause his colostomy bag to fall off which opens the risk for skin irritation and infection around the colostomy site. Since the G-tube stoma and the colostomy are very close together due to Elias size there is an increased risk the loose stool could enter the stoma for the G-tube causing infection there.
- There are weight and nutritional issues that are associated with or contribute to, but not necessarily caused by the leakage.
The last point is where we will focus for a minute. We reported a few days ago about Elias spectacular weight gain. However, he is hovering again at that same weight for three days now. While that is not considered horrible until a few more days go by to the nutritionist, it does show signs of potential problem. The phrase "failure to thrive" has been mentioned a few times in the last few weeks. They want to see a steady weight gain and the inability to do so brings on a score of other potential issues (IE; GI issues, absorption problems, etc.). Of course the leakage from the G-tube could be the only contributing factor, but until we get that stabilized we can neither rule it in or out. We certainly hope that the leakage is the cause for all the nutritional issues, but we do want to know for sure, obviously.
We also got a report on another follow-up head ultrasound that Elias had on Tuesday night. The grade 2 hemorrhage Elias had at birth in his brain no longer appears! So it is safe to say that bleeding has stopped. Overall the ultrasound appears stable compared to the one about three weeks ago. There are still evidence of the enlarged ventricles which will need to be watched and followed. We are not 100% certain what that could mean down the road. We will continue to research this and follow up with subsequent ultrasounds as directed.
Last night we got to spend some time with a respiratory therapist learning emergency techniques, administering his Flow vent medication, and using the ambu bag.
She also observed us doing our daily changing of Elias tie that holds the trach tube in place. She complimented us on how great a job we were doing with everything so quickly. That was very reassuring. We admit that while the thought of bringing him home is exciting, there is a little nervousness as well. Things can and will happen with the trach and we need to rely on the training we get now to help us through those tense and frightening moments. That is a little scary to be honest, but understandably so. Overall, we learned quite a bit last night. Most of it is not as difficult as it seems, but very important. We are certainly eager to learn and are trying to have fun while doing it as well. That is what the respiratory team is enjoying about all of this, plus they get to hang out with Elias and see him smile and laugh at us :) We just enjoy that while it is a very serious time we can all relax and enjoy what we are learning and hopefully it helps us to retain the knowledge better.