Family Meeting Update

We will start off with Elias and his day today, because it was another great day. He was very busy today and by the time we left he was very tired. He should sleep very well tonight. During rounds this morning they decided it might be worth trying to switch him over to just the trach collar w/humidity full time rather than ween him off the Si Pap. They took him off the Si Pap just before 11 am and when we left he was breathing marvelously, not one single issue all day!! Physical Therapy will be coming in daily now to work with him on tracking, sitting up, and stretching. He had an hour PT session today. He got an A+ for the session. They would give him breaks every so often because, as expected, not being use to sitting up his lungs would get a little tired. He would recover quickly and they would begin the exercise again. He really seemed to enjoy it for the most part, dishing out smiles and laughs left and right. It was a lot of fun to watch. The doctors approved us holding again starting tomorrow, given there are no issues with him being on just the trach collar. That will be nice and I'm sure Elias will enjoy the time.

Family Meeting

We were not really sure what to expect from this family meeting, but we were very anxious to hear what the path would be. Present at the meeting were orthopedics (hand surgeon), Occupational Therapy, Pulmonology, Ped Surgery, our Social Worker, our case worker, and of course the NICU team. Here is what each discipline had to say:

• Orthopedics

Will evaluate more closely in two weeks, but initial consult lends itself to a two part surgery. First is wrist centralization, then at 2 years Thumb politicization which is essentially turning the index finger into a thumb. Slightly off topic, we have connected with a wonderful family who's little boy is a little older than Elias. Brody just went through his procedures and had a lot of success. So it will give those of you interested an insight into how things might work. Visit Brody's blog to see how he has done. OK back on topic! The doctor then surprised us all by saying that we should continue splinting as much as possible. WOW wonder what changed his tuned from our first conversation. He also talked about the importance of stretching Elias' hands and wrist. We decided to make it easy to do a few minutes with each diaper change. His final contribution was to suggest we get a spinal film and let the spine specialist catch as early as possible any vertebral problems. As of now we do not know of any problems, but it is the "V" in VACTERL, so it is possible.

• Pulmonology

They have been seeing Elias off and on the entire time, but have played more of a supporting role. It will be once he finally comes home and with the follow-up visit that they will play a very important role in his development. They will also assess him before any surgeries to ensure his lungs are able to handle anesthesia. They will also be watching his development with feedings to ensure he is not aspirating into his lungs and develop a chronic lung disease.

• Occupational Therapy

They discussed Elias outpatient session. These will be done in home with potential for supplemental in- patient visits, depending on insurance. They will also follow-up with any post surgery therapy needed and work with Elias on motor skills.

• Pediatric Surgery

They are pleased with Elias' progress on the trach. The G-Tube is doing well too and the leakage is not a concern. They will do another dilation on Wednesday and change his trach tube. Depending on what he sees during the procedure Elias may not need anything stinting or leading the way to keep the opening to the esophagus. With that though will come a more aggressive dilation schedule at first, likely every two weeks until he is comfortable. They are also very on board with beginning the transition to Home, which we will cover shortly.

• NICU Team

At this point they are comfortable with Elias progress and feel it is time to transition him. Now the question is straight home or transfer to another hospital specializing in pediatric teaching and transition for families. This will still likely take 4-6 weeks to actually happen. There are a few things they will monitor and work on prior to him leaving. They are going to have a full developmental exam done, with us present to see where Elias stands.

• The Transition To Home

We spent a great deal of time, particularly with the case worker discussing how this would all work. Going to the transitional facility would happen when Elias no longer requires the acute care. It is also valuable to get us ready for what we are going to face when he gets home, which took us a little by surprise. He is going to require 24 hour supervision so home nursing care will have to happen. The trick is finding out if insurance will cover full or partial, if any of this. If it is full it would be 24 hour nursing care and we would both be able to return to work. If it is partial, one of us will have to stay at home with him all the time with a night nurse to come in say 11p-7a so that we could sleep. Luckily if the insurance will not cover any of this there is a program in our state that offers this care. Again the amount would vary, but we are guaranteed to get something one way or another. Someone needs to always be available to react when not if, but when Elias Trach falls out. It needs to be replaced very quickly. We had not really thought about that and no one really told us about it either, until today. So unfortunately, Elias will not be able to be left with anyone without one of us there. Going to the transitional facility can also give us time to to have everything set up with the insurance for all the equipment and supplies we will need along with the care. We all know how long insurance companies can take, with all the red tape. We are getting a case worker from BC/BS to help guide us quicker through that maze. As we said a few days ago, we both have to be VERY comfortable with changing his trach tube and prove proficiency. This may take a few tries each and you can only change it once a week, so when Elias comes home could still take some time. We are still shooting for Michael's Birthday the middle of September, but reality is it might take longer, and that is fine. We need to ensure that we can care for him as we need to and respond in an emergency.

Overall, we felt very good about the meeting. We have a decent picture of what is still left, but got a little taste of how rough the road will still be when he returns home. Some of this caught us a little off guard, other aspects we understood already. We will continue to give everything we can to Elias, and be the parents he needs us to be. We do not feel that our overall sacrifice will be any greater by what we discussed today, just different than we able to foresee. It will be a very interesting, but worthy challenge for us as a family. It is one we are willing to embrace and adjust to so that we can have our baby home, whenever that may be. If not sooner, then we will continue make the best of whatever situation we are in, until later comes. Elias has fought so hard and made us all so proud, he deserves everything we can possibly offer to our amazing little son.

Please, feel free to contact us with any questions or concerns you all may have. It is a lot to digest and frankly can be a little confusing. Thank you all again, as we have said so many times before, for all your love, thoughts, prayers, and support. We do not think you all could ever understand enough, how much your energy kept our fires burning. Every time we see Elias smile, we think of each one of you, because you gave us the courage to be strong for him. In return, Elias has been stronger (not to mention amazing) for all of us!!