The "unofficial" 100 day update

Today is technically day +97 but we have most of the results from Olivia's 100 day post-transplant evaluations (if you just want the medical stuff then skip to end of this post, if you want all the details then read on but don't say I didn't warn ya).

Today was a really long day. I'm sitting down and relaxing for the first time all day and it's 9:30 at night, that should tell you what kind of day it's been. I set my alarm for 6am this morning, which means that Peter woke up bright and early at 6 am as well. This sleeping in the same room business is tough. We had to leave the house by 7:30 so that we could be at the hospital by 8am. That didn't happen but we weren't very late. I had to run up to the 4th floor of the Children's Health Center (home of the PMBT clinic) to drop off Olivia's urine sample. Then we headed over to the 4th floor of the hospital for Phase 1 of today's evaluations, Olivia's EEG. When we arrived we had the "sedation discussion". This has been one of the more frustrating parts of the transplant process.....to sedate or not to sedate. They always begin by asking me if Olivia needs to be sedated. My response is always the same--I don't know! Lets talk about what it is that you need her to be able to do today...sit still for 10, 20, 30 minutes? Does she have to be absolutely still or can she watch a movie and move around a bit? Will there be loud noises? Can she sit up? What does this test involve. Some medical tecs are great at explaining what it is they need Olivia to do so that I can make the decision about sedation. Olivia has a "difficult airway" which leads to complications with sedation so I try to avoid having her sedated whenever possible. Olivia had an EEG prior to her transplant but she was sedated (they combined this test with several others that were being done at the same time). The technician explained that the set-up process of the EEG wold be the most difficult and that once they were set up then it shouldn't be too bad. If Olivia was okay with her putting the stickers on her head then things shouldn't be too bad. Alright, decision made, lets try it without sedation. I give peter one of his teething biscuits to keep him happy and they start hooking Olivia up. They had to make all kinds of measurements to make sure they were placing the electrodes in the right place. By the time they were finished Olivia's head was COVERED with over 40 different electrodes. For the most part Olivia was very good during this process. She kept busy with putting pretend electrodes on my head. She also took this opportunity to smear whatever goo and paste they use to attach said electrodes all over my hair. Whatever, as long as she's still and quiet. It took about 45 minutes for them to hook Olivia up and then the test began. Peter was happily playing peek-a-boo with us, I was laying in the bed with Olivia who was happily watching Barney on TV. We sit still like this for about 15 minutes. I'm keeping Peter entertained by talking to him as I'm cuddling with Olivia to keep her still. The technician walks in and says good job, now lets get her to go to sleep. What? It's 9:30 in the morning, she's not tired, she's hungry. She still hasn't had anything to eat at this point and has been talking about chips for most of the last 15 minutes of the test. Well, lets give it a try says the technician. She suggests that Peter get in bed with Olivia and I and we all lay down to take a nap. Wouldn't that be ideal. Olivia and Peter both begin crying and continue for another 15 minutes. Finally the technician walks back in and asks if I think they are going to go to sleep. It's not going to happen is my reply, do they need her to be asleep, our doctor didn't say anything about that. They continue on with the test and we finally finish and head back over to the Children's Health Center.

I stop at the gift shop to get the promised chips (chili-cheese Frito's...YUCK) and we begin Phase 2, a pulmonary function test. Before transplant we lucked out and got a fantastic technician who was able to get Olivia to cooperate and we got great results. Today we were not so lucky. They are trying to measure Olivia's lung capacity by having her take a deep breath in and then blow it out. I tried to explain this to Olivia and then we started the test. I was huffing and puffing like the Big Bad Wolf trying to get her to give it a try but she didn't take a single deep breath or exhale. I knew that the results were not going to be good.

Phase 3 took us downstairs for an echo cardiogram. I gave Peter a bottle because I was worried the whole milk I had brought wasn't still cold enough and he happily drained the bottle and fell asleep in the stroller. With Peter asleep I could focus on Olivia and she did a great job during the echo cardiogram. She laid down next to me and watched 2 entire episodes of Dora while the doctor performed the ultrasound. Olivia also amused herself by smearing the ultrasound jelly all over my hair. It took a long time but they were able to do a really through evaluation.

Phase 4 was just a quick chest x-ray. It's a good thing this test was quick because Peter had woken up by this time and we were all getting hungry. I made a quick stop at the hospital gift shop again for a sandwich and some more whole milk and then we headed up to the PMBT clinic for our regular weekly clinic appointment.

Phase 5 was our regular weekly appointment in clinic. We got into a room in the day hospital and they got Olivia's IVIG started. As soon as we walked into the room Peter decided to spit up the chili-cheese Frito's from our earlier snack (YUCK again). So I stripped Peter down to his diaper since we were about to eat and we all piled onto the bed and had our picnic lunch. Just as we were finishing up lunch the doctor and nurse practitioner came in. Dr. Paul and Peter bonded and Olivia had some fun entertaining Andre. We discussed the results from the various 100 day tests--see the end of this post for the results. Our clinic appointment seemed to go pretty quickly. Peter was just happy to be out of the stroller. Once Olivia's IVIG infusion was complete we went down to the pharmacy to pick up Olivia's meds. We were almost out of all of her regular meds so I had a big order today. We headed to the car and headed home around 3:30pm. Peter fell asleep in the car so I was able to transfer him to his crib so he could continue his nap while I got Olivia in and started on her breathing treatment. Olivia fell asleep as soon as her breathing treatment which was perfect timing because Peter was just waking up from his nap. I started gathering stuff together so that we could leave for the Outpatient Halloween Party (more about that in a separate post coming tomorrow). I woke Olivia up and changed the kids into their Halloween costumes and we headed to the party. We got home from the party around 7:30 and I gave Peter a bottle and he went right to sleep, poor guy was exhausted. Olivia had another breathing treatment and then she happily went right to sleep as well. Overall it was a much better day than our long day clinic a couple of weeks ago, mainly because I was prepared for today to be long and tiring. I do feel guilty that Peter had to suffer though all this today. He did such a great job though!

Now for the medical stuff....

-EEG results look good. There is not any concern that Olivia is having any type of seizure activity. Olivia's lack of voluntary sleep during the EEG is not a concern, they were not expecting her to sleep (I wish I'd known this earlier when I was listening to both of the kids cry for 15 minutes).

-Pulmonary Function Test was not so good. Her lung capacity is drastically lower than it was prior to transplant. Olivia didn't have asthma prior to transplant and she's definitely having asthmatic issues now so Dr. Paul is sure that contributed to the poor results. When I told them about our issues with the test administration they decided to do another test next week. Basically as we continue to treat Olivia's asthma we expect her pulmonary function to improve. They have also started a new med (cingular) in addition to the breathing treatments that we're already doing. I also didn't do her breathing treatment before we left for the hospital this am so that may have altered the test results. I felt bad enough waking Olivia up at 7:20am to leave and I thought she could use the extra sleep, I guess I was wrong.

-Echo cardiogram was good. They got really great images and were able to get a great look at how her heart is functioning. There is not any fluid around her heart. With Olivia's increased heart rate and her breathing issues there was some concern that there might be some fluid around her heart. It doesn't look like the transplant caused any damage to her heart.

-Chest x-ray. I forgot to ask about this one so I'll have to check back at our next appointment. I will assume that it wasn't too bad since they didn't mention it.

-Labs. We are still waiting on some lab tests (the urine analysis, the chimerism results, and the enzyme test). Overall Dr. Paul is very impressed with her immune function. According to Dr. Paul these results are what they would hope to see at someone 6 months post transplant, not 100 days post transplant so that is great news! Basically it looks like Olivia's immune system is up an running at about 60% which is pretty good for just being 100 days post-transplant. We expect these results to continue to improve. We learned that Olivia is having some vitamin D deficiency so they are going to start her on a supplemental vitamin. The vitamin D deficiency doesn't surprise me considering she cannot have regular whole milk with vitamin D (soy milk doesn't have vitamin D and that's all she's drinking) and she cannot go in the sun.