Maybe Home??

The bronchoscopy was quick and went smooth. Dr Rutter (ENT) got a look at the pouch repair and while the tissue had not absorbed as much as he was expecting in to the trachea he was pleased with the way it looked and was healing. He said he tried a few different length trach tubes to see what might work best and because of the lack of absorption the flaps of the pouch were still creating a bit too much of an issue. So he left in the pediatric 3.5/40mm longer trach tube in. While he did recognize that this is not the ideal tube length it was the best option for now. We discussed how we were slowly beginning to knock things off the to-do list towards getting Elias more stable with his airway issues. The CT-Angiogram was also talked about. Dr. Rutter has yet to see a 3-D reconstruction at this time, but should soon. It was difficult to say for sure on the 2-D version if the Subclavian artery or the right-sided aortic arch was placing pressure on the trachea around the carina. We will revisit this when that 3-D reconstruction has been completed and reviewed. If it is there may be a need for a surgery to relieve that pressure and potentially a thoracic-heart surgery if “replumbing” as they referred to it is needed. There is a lesser chance for the later of the two, but he wanted us to be aware of the potential that exist dependant upon what they see. So potentially 2 more unexpected surgeries to add to the growing list. Secretions and the abundant amount of suctioning required was something else of interest we briefly spoke about. It is possible to do a procedure to tie off some of the salivary glands if we can identify that Elias is truly aspirating his spit into the trachea, we will place green dye on Elias’ tongue to test. The other thought is because of the floppy area at the carina (base of the trachea that forks off to bronchi towards lungs) the back and front walls are touching frequently cause secretions to be produced at a much more rapid rate. We will do some spot checking at home in order to provide some insight.

The G-tube incision over the last 24 hours has become progressively more red and puffy. It feels and looks like cellulites, although we do not think that is what it is exactly. Never the less the surgeons decided to add a little stronger antibiotic to the regiment. It is tender, very ugly, and obviously not comfortable for Elias. He was trying to pull at it and scratch it all day. They are also putting bacitracin ointment on the site and cleaning it more frequently. The thought is potentially to be discharged tomorrow. However there are a few questions and issues of concern that surfaced late evening that need to be addressed with the doctors prior to that decision being made. Without going into specifics they basically revolve around getting some clarity on the long and short term plan and addressing Elias high blood pressure and elevated heart rate. He has had both for the last month dating back to August 12th and that first surgery that led us to this point. We also, after absorbing what Dr. Rutter spoke to us about post surgery thought of a few questions we need some answers to. So it is possible that we will come home tomorrow, but it all depends on how the doctors receive and react to our questions and their thoughts. Hopefully, they can provide some security and answers towards the concerns we have and we will be home. That would be great. Pray that we can work all the little details out that can get us home. Elias was 50/50 today in the feeling well department. Some of that was post-surgery discomfort and part needing sleep. With all the different issues and the overwhelming secretions that wake him he is struggling to do well consistently. However, when he does have his moments that he feels better, he makes the most of them and is hilarious as he blows raspberries and moves all around the bed. He is really beginning to develop an aversion to the medical staff. He starts crying (tears, no sound) and making very sad boo-boo lip faces almost immediately whenever anyone walks in the room. We hope this is simply from the last few weeks being so intense, long, & tiring and not the beginning of something that will carry forward. Only times will tell on that though. We can’t blame him if he is though. We just do not want him to dread the doctors, nurses, & hospitals so soon since he has such a long road to travel still.

A few prayers to add to your list if you would. Joshua was just released from the hospital here on Saturday post-BMT. They had their first follow-up today and his engraftment (blood cell production from transplanted marrow) percentage is down and dropping. This could mean many things including the transplant becoming unsuccessful. Please pray that it is a less serious complication and only a minor set back that will resolve quickly for the better. Tonight we also learned of yet another little boy with FA passing away. They did not have a website, but is friends with another FA family who passed the info through the group. His name was Felipe, he was 4 years old. So very sad as we also learned his father had also passed away within the past few weeks. That family has really suffered a devastating amount of loss in a short period. Please keep them in your prayers. This is the second passing of a FA child this week. It is very difficult to hear about these sweet children knowing that Elias faces the same challenges.  While we do not normally dwell on the negative and somber prognosis of FA, it is always in the back of your mind and often is brought to the forefront when events like this occur. We have stayed focused though and it reminds us to cherish everyday that God allows us to spend with Elias regardless of the outcome. He has spirit and fight like all these children do and that makes them extraordinarily special. Thank you all and may God bless all these sick and medically complex children.