Day +90

It's hard to believe that it's been 90 days since Olivia's transplant. In some ways it seems like her transplant was just yesterday but in other ways it seems like it was an eternity ago. Olivia's visit at clinic today went well and I'm very happy to report that it only took 3 and a half hours (MUCH better than last week's 7 hour adventure). Our Wednesday appointments at clinic begin at 9 am. We get checked in and then the nurses access Olivia's port and draw blood for her labs and get her weekly dose of IVIG (Intravenous immunoglobulin) started. I think I've mentioned it before, IVIG consists of antibodies collected from the plasma of healthy donors, it goes through a purification process to make it safe to be be infused into Olivia. It takes about an hour and forty five minutes for Olivia's IVIG to be infused. They go pretty slowly because it's a foreign substance (from someone else's body) and it's infused straight into Olivia's veins. Olivia's school teacher comes to our room in clinic and they have school time. Peter napped for a bit while we were at clinic today so it was nice to just have to worry about Olivia for a bit. Since today was Day +90 Olivia also received her monthly dose of Pentamidine. Pentamidine helps prevent pneumonia. Olivia receives this every 30 days so this was only her 3rd time to get this medication. The first time Olivia had Pentamidine she was up on 5200 and they gave it to her as a breathing treatment, the second time she was an outpatient and she received the Pentamidine through her IV and it made her really nauseous and she kept vomiting so they had to give her anti-nausea medicine and then infuse the medication really slowly. Today they almost gave her the IV Pentamidine but I caught them just in time and had them give her the breathing treatment. When they administer Pentamidine as a breathing treatment Olivia as to sit inside this clear plastic tent and wear a mask with Oxygen and the medication blowing into her lungs. I sat with her under the tent and wore a different kind of mask so that I didn't breath in the medication and Peter happily waited outside of our room and we played peek-a-boo through the sliding glass door. The breathing treatment only lasts about 15 minutes and I'm glad we were able to do it that way instead of through the IV. Olivia didn't get nauseous at all and it was much quicker. The doctors came in and looked at Olivia. No major med changes today. We did start to talk about the 100day tests. At or around the 100 post-transplant mark they repeat the same tests that they did as but part of Olivia's pre-transplant work-up to compare how she's doing now to how she was doing prior to transplant. They will draw her 100 day labs on Monday. Monday will technically only be day +95 but that's close enough. Those test will check to see which DNA is present in her blood. In this case we're hoping to see donor DNA and ideally we'd like to see the presence of the enzyme that Olivia's body was unable to produce prior to transplant. We're also starting to schedule the rest of Olivia's 100 day tests, she will be having an EKG and an echo cardiogram next week. She might have to have another MRI but they are checking to see if the CT scan she had a couple weeks ago will be sufficient enough for now. A longer, more comprehensive series of tests will occur once we get to 6 months post-transplant. Those tests will also include a return visit to the University of North Carolina's Center for Learning and Development to evaluate Olivia's development but we can worry about that later on. Olivia doesn't have to return to clinic until Monday so we have Friday off! Overall it was a good day at clinic. As a reward for reading through that long update I have a short video of Peter demonstrating his fabulous jumping skills.



And finally....for those who have been asking specific questions about the oral medications Olivia is on here's the list....

Liquid meds

*Acyclovir (and antibiotic)--200mg twice a day
*Amlodipine (to control blood pressure)--3mg twice a day
*Enalapril (to control blood pressure)--4mg twice a day
*VFend/coriconazole (an anti-fungal)--200mg twice a day
*Prednisolone (a steroid to prevent graft vs. host)--2mg twice a day
*Tacrolimus/FK 506 (to prevent rejection of the transplant)--.6mg twice a day *Zyrtec (because her runny nose might be allergies)--2.5mg once a day *Avelox/moxifloxacin hydrochloride (an antibiotic)--170 mg once a day

Tablets (I'm sure these taste awful but Olivia just chews them right up, I know she loves to have control over the medicine instead of me just squirting it into her mouth with a syringe

*Prevacid (prevents heartburn)--15mg once a day
*Magnessium (FK 506 tends to lower magnesium levels)--200 mg twice a day
*Linezolid (an antibiotic)--200 mg twice a day
*Multivitamin--once a day

Topical Cream
Olivia is still having some graft vs. host rash on her skin but it's well controlled with these creams. We're lucky that it's not more serious. her skin is very sensitive and we are very careful about sun exposure and anything else that comes in contact with her skin--lotions, soap, etc.
*Triamcinolone--applied twice a day
*Protopic--applied twice a day

Breathing Treatments, since Olivia's respiratory issues last week we started administering the following at home with a nebulizer. Olivia has to wear a mask that holds the medication and it's hooked up to a loud electric fan that vaporizes the medicine so Olivia can inhale it
*Albuterol (opens up airways to get air easily into the lungs)--1.25 mg over 20 minutes three times a day
*Pulmicort (treats asthma)--.25mg over 15 miutes twice a day

Now that I write all that down it does seem like a lot. I can't believe that we were doing IV meds at home as well when she was first released from the hospital! I am so glad that we never had to deal with TPN (IV nutrition) at home. I don't think I could have handled all of that! I really do have my routine down. I have my med charts taped onto the cabinet doors in the kitchen so that I can reference it every time I get her meds ready. Now if you've made it through that long list of meds I will reward you with this video of Peter driving his dump truck. I have no idea how he climbed into the dump truck, I have yet to see him actually climbing in but I find him sitting in it very often.