Can't we all just get along?

Enjoying his first Jamba Juice post-transplant

I've been in a funk after our last visit with Dr. Hardy, which incidentally was the week after we returned from Duke. She was anxious to hear Dr. Prasad's take on Jaden's lung issues but wasn't quite in agreement when I reiterated what Dr. Prasad had made very clear to me: HE DOES NOT HAVE BRONCHIOLITIS OBLITERANS!!!!

Dr. Hardy was shocked when I told her that the PFTs done at Duke showed a 40% improvement after the Albuterol treatment, which essentially shows that the breathing treatments do help. Dr. Prasad went as far as to say that Jaden needed to be on them regularly for the foreseeable future. Dr. Hardy tried to explain that her testing at CHO only showed a 3% improvement after Albuterol, so in essence not much changes after the breathing treatments. I suggested that maybe the methodology at Duke differed or maybe the calibration was slightly off at one place or the other.

Dr. Hardy then went to listen to Jaden's lungs. She told me that things sounded WORSE. She heard the crackling in both lungs and all over on the right side (not just at the lower part of the lung). I was getting really stressed. What do you mean that things are worse? Dr. Prasad had said that Jaden had an active infection and was treating it with a stronger dose of the Azithromycin. Did we know if it was a bacterial or viral infection? Maybe the Azithro wasn't the right antibiotic and wasn't treating the infection? A thousand thoughts went through my mind, which incidentally I was blurting out to Dr. Hardy probably in a rapid-fire fashion.

Dr. Hardy decided she wanted yet another PFT at CHO the following week so she herself could recheck her findings. ANOTHER PFT???? Here we go again...

Jaden also had a few sniffles that morning and Dr. Hardy wanted to have an RVP (Respiratory Viral Panel, aka RVB or Respiratory Viral Battery at Duke) done immediately. She called Sherrie at the Day Hospital, but there were no appointments until later in the day. So, we were scheduled to head over to CHO right from the pulmonary appointment.

I called my sitter to check on Devin and Gia and told her about the change of plans. Then Jaden and I did a quick drive-through lunch, which you've probably guessed is the reason for my expanding waist line, and headed to Oakland.

Nurse Sherrie came in to do the test, but told me judging by his appearance, she didn't expect anything to come back positive. She also listened to Jaden's lungs and told me she heard a little more crackling but it was nothing that she was concerned about. Sherrie told me she wanted Jaden back at the Day Hospital on Monday morning so she could hear his lungs again. The PFTs were already scheduled for Wednesday.

Well the weekend came and went without any further complications for Jaden. We went to the Day Hospital last Monday and Dr. Bindu was excited to hear Dr. Prasad's opinion on Jaden's progress. I gave her the low down and once again told her about the "NO GVH" comment and then went on to repeat the three areas of concern with Jaden's lungs: interstitial pneumonitis from his pre-transplant infections, an active lung infection which was being treated by a higher dose of Azithro, and asthma. I went as far as to tell her that GVH of the lung was nearly impossible with identical sib match and this far out from transplant. Dr. Bindu seemed to concur with the last statement.

She listened to Jaden's lungs and said she didn't hear much difference from the last time she heard them (remember this was a little while ago since the group has several Attendings and we don't see the same one each time). Great. So, was this his "baseline crackling" that Dr. Prasad always spoke about?

Dr. Bindu then asked about Jaden's medications and I stressed that Dr. Prasad had upped Jaden's antibiotic and told me to STOP giving it to him after 10 days. She looked perplexed and asked again if Dr. Prasad said to stop completely. Yes , that's exactly what he said! She repeated this to the nurse practitioner and I could tell they weren't convinced. I think they were still thinking about the BO (bronchiolitis obliterans, not the B.O. from poor hygiene).

At this point, I was really starting to lose it. I felt like I was getting a different opinion from each of the medical professionals Jaden had seen. I told Dr. Bindu that the CHO BMT Team had to get on the same page with the Duke BMT Team and also with Dr. Hardy, Jaden's pulmonologist. I urged her to set up a conference call with all the parties and clear things up once and for all. Dr. Bindu agreed and said she'd set something up as soon as Dr. Walters returned from vacation. She could tell I was visibly upset and assured me things would get cleared up quickly. I expressed my dismay with the varied prognosis (asthma is on the other end of the spectrum from GVH!) and then told her I was looking for things to be resolved and a unified diagnosis and treatment plan to be presented to me from the team.

I also secretly shot off an email to Dr. Prasad and Dr. Priti giving them a heads up and encouraging them to participate in this call ASAP. I then made it clear that I wanted resolution from all parties immediately. As usual, Dr. Prasad responded promptly with a short "no problem".

Yesterday, I took Jaden in for his PFTs. It was one of the quickest tests we had ever had. I guess Dr. Hardy just wanted the spirometry test, before and after the Albuterol. We were literally in and out in 30 minutes. Unheard of! The technician told me things looked great and he didn't see much improvement after the Albuterol. He also printed out the results for me in case Dr. Hardy didn't receive them in time for our next appointment, which was next week.

Now on the personal front, Jaden has been doing so well. He's starting to really get back into the swing of things. I had asked Dr. Bindu in clinic about what the immune function test results meant and if we could ease up on some restrictions for Jaden. I knew he still couldn't go to school or be in crowds since he was on immunosuppressants, but what about the food restrictions? Could we bend a little on one or two of them? Jaden wanted to drink Jamba Juice, eat pastries right from the shelves from Starbucks, eat ice cream from the open containers at Baskin Robbins, have Slurpies....the list went on and on. I told Dr. Bindu that these were minor things to us, but each item meant getting back a little sense of normalcy for Jaden. At the same time, I wasn't going to risk an infection over a scoop of ice cream.

Dr. Bindu thought about the list for a minute and said she wouldn't know for sure until the team reviewed Jaden's immune reconstitution results. She then glanced at Jaden and told him he could have Jamba Juice. This probably posed the least danger since everything was frozen. However, she stressed that Jaden could still not have any berries and that we should have them clean out the blenders before we get the drinks. Jaden couldn't contain his excitement after hearing the news. He made me promise to take him to Jamba Juice the same day!

I was hoping to hear more good news after they team convened to discuss the results from Jaden's one year testing, but for now we'd take what we could get. It was great to see Jaden so excited.