It’s been about three months since I posted anything relating to medical issues with our kids. Can it be? Has it really been that long? Doesn’t seem possible, does it??
Well, we’re all hanging in there and nothing major has occurred. Summer went by quickly and now we’re back in the swing of the school routine. Jonah is back to getting speech therapy three times a week as well as assistance with certain tasks related to speech and language comprehension. This is good and will hopefully continue to reinforce his need for ongoing articulation practice with his sounds. Later next week, he will see the Speech Doctor, who will conduct a few tests and perform a nasal endoscopy to assess his velopharyngeal insufficiency. BIG WORDS! But it will basically help us determine if he needs further corrective surgery, as well as help create a platform for which to request from the insurance company that we not have an annual cap on therapy sessions.
As you may recall, in early July, I posted that we had a follow-up appointment with a surgeon we were considering taking over Rees’ care after the retirement of our previous surgeon. The result of that appointment led us to consider what other options we might have or if there even were any. In early August, we sent out a mass communication to various plastic surgeons and craniofacial clinics across the USA. As I had said in a previous post, we did actually receive responses from various locations/doctors. Additionally, we also found that we could request an online 2nd opinion from an expert at a very highly esteemed Children’s Hospital. This piqued our interest so we looked into it. We also looked into the hospital, the doctors (experts), etc … we were very impressed and excited at the thought of obtaining an opinion from a location with such experience and prestigious accolades. In order to request an “opinion”, we had to pay $650 up front! YIKES! We were hesitant at first but based on the information that we had and our desire for a particular doctor’s opinion, we went for it. The process is initiated by a Third Party and we had to complete a questionnaire to initiate the process. We provided very detailed information regarding Rees and all that he has been through, including more than a dozen photos to back up the information that we provided. During the initial contact with the Third Party (that was actually a Staff Physician who contracts with said Third Party), we were SO IMPRESSED with the information they provided, the care and concern they showed for Rees and all that he had been through, the way that they went over EVERY DETAIL we shared with them and even asked questions to ensure they understood. We thought, “WOW! If the doctor who provides the ‘opinion’ is this attentive and detailed, we will be in excellent hands!”
Now, I’m sure I don’t have to tell you … if you are a consistent reader of these posts, you can easily determine that Rees has a VERY LARGE medical file. The Third Party takes on the task of collecting ALL medical records, including diagnostic imaging, and then sorts through it to create a file that includes Clinic/Hospital notes, Procedure/Surgery notes, Imaging notes, Laboratory results, Pathology notes, and miscellaneous information. They take it even a step further and bookmark pertinent documents and pieces of information that would be necessary for the “Expert” to generate his/her opinion. THIS INFORMATION IS INVALUABLE AND WORTH EVERY ONE OF THOSE $650!!! Thankfully!!
Unfortunately, the “expert opinion” was not of the same quality. Truly, we were very disappointed to find that the doctor who we thought was going to be our next “GO-TO” … likely will NOT be. Here’s why: 1) Rees’ given diagnosis that we have up to this point was not defined and explained as we were told it would be. Rather, a generic, most likely scripted and very short two sentences was provided. It was very impersonal as it did not seem to even relate to Rees’ condition. 2) Specific responses to our specific questions were evaded; we did not actually get any concrete answers. 3) This doctor seemed to suggest that Rees’ situation has not been the result of the diagnosis we were given, which is fine in itself, however, there was not substantial or corroborative information to support this statement. 4) The responses seemed to suggest that the doctor did NOT review ALL of the information that was presented. There’s nothing I’d like more than to pick up the phone and call our former surgeon and say, “hey, what do you think of this?” … but that doesn’t seem very appropriate for me to do. I mean, he DID retire after all … I probably should let him, right?
Now, all that being said, it was not a total loss. As I said, the administrative portion of this process was absolutely outstanding so, to make use of the work that was done, I printed out the documents that were compiled and sorted them into a binder in the same way that they were organized for the “Expert”. I even printed screen-snips of several of the CT images.
I’ve begun going through the documents, highlighting terms I’m not familiar with, underlining phrases, looking things up for clarification … it’s all very interesting to me and it’s also important to me that I have the best understanding possible for what Rees does or does not need, has or does not have. I can’t help but shake my head as through all of the documentation I re-live Rees’ medical ordeal of the last year.
Another very interesting discovery related to this process is that in order to receive the “2nd Opinion” from the “Expert”, we have to select a doctor who will also receive the report. What we didn’t realize, however, is that in order for US to receive the report, the doctor whom we selected to also receive the report MUST sign a release for it first. We were not aware of this little tidbit but wouldn’t have expected it to be a problem. Since our former surgeon was no longer available, we listed the doctor who we saw for Rees’ last surgical follow-up. However, this doctor REFUSED to provide his signature to receive the copy of the “2nd Opinion”. Well, … THAT WAS DISAPPOINTING!!! We were still able to obtain the report after providing the information for our family doctor who was quite willing to sign for the report. With this in mind, it was revealing for us to find within the medical documentation the notes that the REFUSING surgeon had dictated at the follow-up visit we had with him.
ONE THING I HAVE LEARNED TO BE TRUE, based on the documented notes from the various doctors involved with Rees’ care, … they do not tell you EVERYTHING that ends up in their dictations.
One of the main reasons we pursued looking for other doctors was because during that surgical follow-up appointment, while the surgeon was very friendly, knowledgeable, and experienced, we felt that he was not completely comfortable with the next steps for Rees. We understood that his scope of care was limited. Instead of having three different surgeons complete three different surgeries, we prefer to have one doctor capable of handling as much as possible. Now, we have found from his notes that he is concerned about the viability of the procedure that he touted as the one he has performed numerous times and as being the best route for constructing a nose for Rees.
What we do agree with that was noted in the “expert opinion” and previously understood from our former surgeon and the follow-up surgeon, as well as a kind and informative email response from one of the craniofacial centers that responded to our inquiries is that … Rees needs to heal. His body needs time to recover and replenish after all that he’s been through. It will likely be a year from his surgery this past May before he has another surgery and, at that point, it might only be to remove the hardware holding his skull together.
We are uncertain of the next steps and the words of our former surgeon echo in my mind, ...“he may never have a nose like you and I do.” But I do know that what Rees needs, … the best that we can do for him … is to be patient, to be diligent in our advocacy for him, and to continue to be his loving, caring, compassionate, eyes-wide-open family. Sometimes, that is super easy in theory … I’m his Mama and I love him and I don’t even see what makes others gasp.
But sometimes this is difficult to accept as other words and expressions continue to accumulate and linger in my mind …
… the little boy in the post office who says, “Mommy, look at that boy! He has a funny nose!”
… the teenage boy who took out his phone, continuing to make obvious attempts at getting a photo during a school program.
… the children playing in the water nearby, their audible gasp and then look of shock, as they stare while whispering amongst themselves.
While we wait for him to heal, we have other considerations that we are pursuing. Both he and Jonah will have a consultation with Urology next week. Neither of them have been circumcised and due to all the surgeries that they started so quickly after arriving in the USA and their surgeon refusing to allow circumcision simultaneous to another procedure, it just wasn’t something that had priority. However, even though this is really 'late in the game' we do feel that with all that they have going on, this is a “difference” we do not want them to have to deal with. A couple weeks after that, Rees will have another consultation, ... with Hematology. Due to excessive blood loss during surgical procedures and the blood reactions he has encountered on several occasions, it was noted by our former surgeon that he should be evaluated. We think that is probably a good idea and enough time has (potentially) lapsed since his last surgery to allow us to begin looking into this.
Beyond that, in January, we will also have a “Full Craniofacial Team” consultation with a different health system. The team there received the letter we sent out this summer and they are very eager to meet Jonah and Rees. We are interested in hearing what they have to say (but in no way committing to receive care there until we have evaluated all our options) and how they will do their assessment, which will be done in a 4-hour appointment. Eek!! One of the things that intrigued us right off the bat is that their “Full Craniofacial Team” consists of two Plastic Surgeons, a Neurosurgeon, ENT, Speech and Audiology. In discussing and scheduling this appointment, reference was made like this: “oh, I’m sure you’re used to this with all your kids where you were previously cared for …” Uhm, … no, no we’re not. I can tell you that in the ten years that we had care for all our dumplings, we NEVER saw our plastic surgeon with our neurosurgeon AT THE SAME TIME! Speech was a referral and done at a completely different location. And we never saw ENT or Audiology … EVER. So, will this be overkill?? It will definitely be different … but not necessarily wrong … and maybe different will be good! I guess we’ll find out.
In the meantime, we are enjoying Fall and all that it brings. We love pumpkins and mums and the changing leaves. Happy Fall Y'all!!!
