The doctor on call this week was Dr. William Berquist, MD not only is he a great doctor, but he's also a really personable guy. At our clinic appointment they let us know how Dylan's labs are. At our visit prior to this the doctors were concerned with the level of Dylan's anti-rejection medication. Their concern was that it was too low (they want it between 8 and 10...Dylan was at 6.6) so we added half a milliliter (1/4 of a milligram) of Prograf to bring it up to a good level. As we sat waiting for a room our transplant coordinator came out to let us know it was even lower than before.
Saying we were frustrated would be putting it mildly. There is a lot of fine tuning and tweaking to get this to a good level. Now the question, why? Why on earth would the level go down with a higher dose? Amber and I both asked if it had something to do with the time we give Dylan his medicine, but were told it was not really going to make a difference if we were giving it thirty minutes to an hour earlier than before, as they give a 1 hour variance anyways. Despite the issue with his Prograf levels his labs looked really good. All his liver function tests were normal and trending down faster than anyone could have predicted. The doctor started talking about changing doses of his Prograf to try and get it to a better level and I suggested that we see if the level goes up by us just switching the time we give it to him (medication level must be checked twelve hours after the last dose). We were certain that was the only thing that had changed with the last two lab draws. I am sure we have mentioned before, but the medication has very strict rules about the way it is given, there is no food/drink for an hour before or an hour after taking it. It makes it difficult for dinner if he can't eat from seven to nine and we are trying to get it during a better time for when he returns to school. Since Dylan's labs were so good the doctor agreed to let us try a little experiment and move the Prograf dose back to eight. This will make the lab draw as close to twelve hours after the last dose as possible. We then had dinner with our family that live in the area and then made the drive home. What a long day it had been.
Thursday rolled around and we made our way back to the life we are attempting to adjust to. The labs were again taken and we made our way to clinic later in the afternoon. We were again met by our transplant coordinator whom cheerfully let us know that Dylan's Prograf level had come back within range and was now at 9.2; to say we were elated would be an understatement, we were so happy to know that what we thought was going on ended up being correct, and furthermore were extremely happy that Dr. Berquist was willing to let us do this experiment and trust what we were thinking. It really goes to show how great these docs at LPCH/Stanford are. It could of been very easy for him to say no and continue adding more meds to combat what the labs were showing. Over the years Amber and I have learned that sometimes you have to think outside the box and really dig deep and trust your instincts. If we hadn't done this throughout the years I don't believe D-man would be here. I strongly believe in mother's intuition and I feel through this process (like anyone going through life/death hard times) it forces you to be this way.
As of this moment Dylan is the healthiest he has ever been in his life. Literally all his labs were normal last lab draw and the docs seem to be really happy with his progress. Dylan will remain on a 2x a week schedule for the remainder of the month. As long as his labs stay to this trend, they will start with removing his Prednisone (steriod) next week, which means Dylan is one step closer to going back to school. Dylan did start a new med this week though, which is Bactrim (antibiotic) and this will remain for 1 full year; a bad thing about this medicine is Amber is deathly allergic to it (Sulfa based drugs cause anaphylaxis in her) but on the flip side, its only for a year.
I myself have been dealing with some ups/downs, I feel like such a weak person saying that but its true. I started back at work full time this week and to say its taking a toll on me is an understatement. It feels good to be back to the ole grind but at the same time I just don't have the energy level I did before. I'm also battling insomnia even more so now, as I think the stress level is not helping with anything. I also have been dealing with some fairly decent pain and major acid reflux issues. Those who know me know I have a "bad stomach" but this issue now is totally different. I feel this overwhelming amount of acid in the back of my throat and churning in my guts, one morning I even threw up bile...its really uncomfortable and I called the docs to see what might be going on or if this is normal. They took me off the Protonics they had prescribed and now have me on Nexium, which is another type of drug to treat acid reflux. I was advised if my symptoms are not better within 7 days that they would need to go take a look and see what's going on. I'm really hoping the meds help, I really don't want to deal with any complications and not looking forward to a endoscope or something of that nature. All-in-all I'm really grateful for where we are with everything and I'm doing my best to keep my head up in regards to my own recovery. Folks keep telling me that I need to take it easy, that I shouldn't be working, and that I need rest above all else. I agree with most but I had to return back to work and resume life and make money again. Just because extraordinary circumstances have been put on us doesn't make bills stop and the rest of the world stop revolving...just like everything else, we're doing the best we can with what we got and we're just trying to find that fine balance between it all.
Thank you everyone for your continued support of our family, we are far from over with everything that is going on, and we're so grateful for where Dylan is at with his recovery...all we can do is be hopeful and pray that this trend continues, as we know in a drop of a hat how fast life can change in these kids like Dylan.