Tuesday, December 25, 2007

 

posted by Devin's Mom 12:00 AM

Thursday, December 20, 2007

 

Better Late Than Never!

posted by Devin's Mom 11:11 AM

Wednesday, December 12, 2007

 

Happy Birthday Devin!

Tweleve years ago, a sweet little blue eyed blonde came into our family. Now, he is not so little, not so blonde and has moments of not so sweet. We have decided we will keep him. Look for a picture later this evening.

posted by Devin's Mom 3:44 PM

Saturday, June 09, 2007

 

Four Years and Relay For Life

Today is Relay for Life. I decided to check on the date for Devin's second transplant and discovered it was today! Four years ago, we brought Ryan in to donate bone marrow to give to Devin. Here is what I had written at the time:

Day Zero...Transplant Day!

Today was the big day, Day Zero or Transplant Day. Ryan was not scheduled for surgery until 2:30 pm but on the off chance we could get an earlier time, he could not eat anything after midnight and only clear liquids until 9 am. Greg, Kierynn, Ryan and I went down to hang out with Devin while we waited. He was started on levoquin yesterday, an antibiotic.

Dr Frangoul came in to check on us as did Becky, one of the transplant nurses. Since Ryan was part of a study in using the GCSF shots in child donors, we filled out some papers on how he reacted to it and if he had any problems. Since he didn't even say ouch in the 5 days he got the shot, that went very quickly.

We had to be down in the Pediatric Surgery area by 12:30 with Ryan so we went down and waited. And waited. And waited. About 2 pm, Greg went back up to Devin's room to check on him. When he got up there, Kristen called and said that the Surgery people had called the house and said if we were not there immediately, the surgery would be cancelled! Greg ran back downstairs, went storming back into the surgery area to point out that we HAD been out there for almost 2 hours. He found the correct person, who said a mix up in paperwork had caused the mild panic. Everything got cleared and Ryan was called back to his room.

Once there, he got his vitals and such taken care of. He opted to not take the versed, a mediacation to relax him, since he doesn't like the taste. He was fully awake as they wheeled him back. He did request a root beer smell in the mask to put him to sleep. There are all kinds of scents that he got to choose from. Once he was put under, an IV was started and he got a caudel block.

Greg and I went back up to Devin's room to wait with him while Ryan was in surgery. An hour after he went in, we had Dr Frangoul come in to tell us that they were very pleased with the results and the marrow was currently on the way to lab to check it out. Ryan was still in recovery when I went upstairs to be there when the bone marrow was started.

Up in Devin's room, Dr Frangoul let me know that they had gotten the same volume from Ryan as they had 2 years ago but with 50% more cells...which is what they wanted to see happen with him getting the GCSF shot. Devin was given cortisone and benadryl and then Ryan's bone marrow was brought in. There were two bags of bone marrow, for a total of about 300 mg. It took a little over 3 hours to give it all to Devin and he had no reactions to it.

Ryan stayed down in recovery for quite awhile since he was feeling pukey but close to 8 pm, he came up to Devin's room. Both boys were pretty well down for the count by that time and mumbled at each other. Kristen came up to spend the night with Devin.

Both the boys got a stuffed leopard today. Ryan has a normal leopard that he named Tropic and Devin got a snow leopard he named Snow.

Devin's counts today are not handy but I believe his WBC was 0.4 PCV 22 and platelets were not back yet. They will jump tomorrow from getting the bone marrow.

It was quite a day and so hard to believe it has been 4 years already! Devin was honored as a Survivor today at a luncheon for Relay for Life. We got a picture of both boys, which I will get scanned in.

There is a problem with the archives at the moment, not sure why. Not to worry, they are all still here, I just can't get the link active on the web page at the moment.

Devin has a swollen ear at the moment, we are keeping an eye on it. We think it is from a bug bite and nothing serious.

We have kept pretty quiet here since nothing much is going on with our boy. His next clinic and endocrine appointment is not until September.

posted by Devin's Mom 11:06 PM

Tuesday, April 03, 2007

 

Bleck



Here is Devin while waiting, waiting, waiting to be seen. At least he was entertained.

Bleck sums up how I feel about our new hospital. Several weeks ago, I got word that Devin's records had been sent to his new doctor and to call for an appointment.

I called, verified they had the records and made Devin an appointment. The office asked for a referral from his primary pediatrician so I called to request that. The day before the appointment, I got a reminder of his appointment.

Even though we are less than 30 miles from the new hospital, it took almost 2 hours to drive there. Gotta love the DC traffic! Since the parking garage was almost full, it was all valet parking. We were directed to the oncology floor rather than the clinic but eventually made it to the clinic.

After waiting an hour, I signed consent forms. Another 2 hours passed before they told me that Devin's referral was not there and could we reschedule. Because of the school schedule here, I had to take not only Devin but Iain out of school for the day. So, I drove almost two hours, sat for 3 hours, paid $7 for parking and drove another 2 hours back home for nothing. I still can't figure out why NO ONE called to tell me the referral was not there. I would have made sure it was taken care of. They knew before we got there the referral was missing. I was not a happy mom.

I spoke to the office the next day and asked that I get a call back to tell me specifically what was missing so I could make sure it was sent before I rescheduled the appointment. A week passed with no word from the clinic. I called back to find out what was needed and got this response: "Oh, we got his referral last week, you just need to make an appointment." Thanks, nice of you to call and TELL ME THIS. ::::sigh::::

So we go through the entire thing again today but this time, the referral was there and we only had to wait 2 hours to see the nurse practioner and an attending. Since nothing is going on with Devin, there was not a lot to say. He will be seen again in 4-6 months and also see the endocrinologist then. maybe we will get to meet his actual doctor. I realize that there is no pressing need because Devin has nothing going on medically but it would have been nice to meet him. I just feel like we have been shuffled to the side. It makes me really appreciate how great Vanderbilt is and all of the staff.

I am just not at all impressed with our experiences so far and frankly, at this point, I would be worried if something were to happen to Devin that would require him being seen there long term. I keep telling myself that this only reflects on the administrative side of things, not on the caregivers but it is hard to convince myself of this.

So, we have to call back in June to get his next appointment. Thankfully, his referral is good until September!

Too bad flying back to Nashville for his check ups are not an option.

We are settling into Virginia nicely. There is a creek right behind our neighborhood where the kids can go catch minnows and crawdads. Devin really enjoys his school. Ironically, his teacher has family in Dickson! We got a puppy a few weeks ago, an English Springer Spaniel named Tinsel. This week is spring break so tomorrow we are going to fight the traffic and go to the National Zoo.

posted by Devin's Mom 3:13 PM