Tricks AND Treats

We had some unexpected tricks today thanks to Olivia's lungs. Yesterday I noticed Olivia's respiratory rate was a little higher than usual and towards the afternoon she started having the occasional coughing fit. We did more albuterol treatments than we usually do hoping that would help. I ended up sleeping with her in her room (meaning neither one of us really got much sleep) and I did a couple more albuterol treatments throughout the evening. She was breathing quickly but she wasn't struggling to breathe so I decided the situation was serious but it wasn't urgent. Olivia was talkative and active, her appetite was good and she didn't have a fever or complain of any pain. Friday we were not scheduled to go to clinic but I was pretty sure that we would end up making an unexpected visit. This morning I called the PBMT clinic to tell them about our day yesterday, I wanted to bring Olivia in so they could check things out before the weekend, of course they agreed and into clinic we went. Olivia had already had 2 breathing treatments this morning but by the time we got to the clinic her respiratory rate was pretty quick. She was inhaling between 60 and 70 times per-minute which is pretty quick (Olivia typically averages around 35-45 when she is awake). Since Olivia seemed to be having some trouble breathing one of the nurses checked her oxygen saturation right away before we even got checked in. Olivia's oxygen saturation was at 98% so that was great news! Her pulse was good but she definitely was breathing rapidly--"Faster than a goat" were the exact words. Olivia's primary doctor, Dr. Paul, isn't in clinic on Fridays so we saw a different doctor. He was actually the doctor on rotation during our first two weeks inpatient back in June. He spent a while listening to Olivia breathe and he said that he was hearing some "crackles" on her right side. They went over Olivia's most recent history----a "snot test" 10 days ago, on antibiotic X, Y, and Z, etc. Then we discussed the possible causes of the increased respiratory rate....it could be Restrictive Airway Disease as a result of the chemotherapy but it's pretty localized so that is unlikely, it could be the flu but she doesn't have any symptoms other than the respiratory rate and no one else around us has been sick, that leaves infection. The doctor ordered another chest x-ray (Olivia's second this week) and another "snot test" and some blood work. Since they were doing a "snot test" to check for influenza (both regular seasonal as well as H1N1). Whenever they suspect that it could be flu the nurses go into what I call contact-panic mode (and rightfully so, seasonal influenza or H1N1 could be deadly to these kids). They suit up in special gowns then they come in with a giant hood, they look like bee keepers. All of this preparation to perform the 5 minute "snot test". They accessed Olivia's port and drew the blood to run the labs and then we headed downstairs for our chest x-ray. Since we are on "contact isolation" until proven otherwise the x-ray went quickly and we headed back up to the clinic.

Back in the clinic they administered a different type of breathing treatment and we waited for someone to read the chest x-ray. The breathing treatment seemed to help and Olivia's respiratory rate slowed. The chest x-ray looked completely clear. They made some changes to her meds, adding the new breathing treatment and putting her back on an antibiotic that she had just finished up on Tuesday.

Our unexpected visit to clinic today also brought some treats. They had reverse trick-or-treating in the clinic today so staff members came to all the exam rooms with candy. Olivia also got to do a pumpkin craft project. Back on the 1st floor of the hospital they had trick-or-treating stations throughout the lobby and while we waited for Olivia's new medications from the pharmacy I let Olivia do some trick-or-treating. She got a bunch of stuff and she was very considerate and made to get some treats for Peter as well.

In the midst of our clinic visit I looked down and realized that I switched the kids socks, Peter has on Olivia's and visa versa. I must need more sleep, or more coffee, or both!

Contemplation

So I caught about 5 minutes of the news today. Apparently President Obama got up early this morning and went to meet the plane that was carrying the bodies of 18 service members who died in Afghanistan. I am trying to rationalize why he would need so long to make a decision about Afghanistan. Maybe there's some sort of clandestine operation going on and soon the entire situation will miraculously be resolved. Maybe the "a decision will be expected in a few weeks" is just a line that is being fed to the media as a cover while things on the ground are happening. Maybe....... Meanwhile my friends and family members are in Afghanistan working hard. I don't think they are stalling and waiting for a decision. I don't think that a "time out" was called so that our President can take his precious time making a decision. I absolutely appreciate that he's taking the time to carefully review the information and weigh all the options. But I think he needs to make a decision already. It's not going to get any easier. I think that his going to meet the plane this morning was a nice gesture but it still doesn't change the fact that he just needs to make a decision already. It all seems like such a waste--wasting time, wasting money, wasting resources, wasting lives. I'm praying for our President to make a decision and praying for all those families who are affected while the contemplation continues, praying for those families who welcomed their warriors home for the final time today. Praying that they never feel that their sacrifices are wasted.

PBMT Halloween Party

I know that I said a couple weeks ago that we weren't going to do Halloween costumes this year but I changed my mind. Last week I was playing with Olivia and Peter when I got a great idea for costumes that would be easy to make. Peter already had the red pants and Olivia had a red turtleneck so I just had to get pants for Olivia and a shirt for Peter. I bought some white felt with a sticky back and assembled their costumes. I found the blue striped hat on clearance at walmart for $2. Peter had one as well but he ripped his off and threw it somewhere about 30 seconds after I put it on him. Last night we went to PMBT Outpatient Halloween party and I think Olivia had a great time. The family support staff put together a great event and it was really nice to be able to leave the apartment and socialize with other people! They had fake pumpkins (Olivia can't be around any real produce) for the kids to paint and decorate then they had a trick-or-treat trail set up in the Duke Gardens followed by pizza. The whole evening went by in a blur and it was really nice to be able to see other people.

Here is the official costume debut. In case you're wondering what Peter is eating it is a french fry, I bribed him with a french fry so that he would be still.

Thing One and Thing Two from Dr. Seuss.

When I told Olivia we were going to a party to see her friends she was so excited. I know she misses being able to see other kids. She put her hat on all by herself and then proceeded to shout "mamma ready" all the way there.

Peter cuddled up with Molly, the child life specialist from 5200. Too cute!

The PBMT pumpkin at the start of the trick-or-treat trail.

I went back and forth about taking the stroller on the trail. Olivia said she wanted to walk and I figured the exercise would be good for her so I put Peter in the baby bjorn and off we went. Olivia did a great job holding my hand and walking along The trail was pretty short but after the rain we've had here over the last week it was a little slippery in some areas. Following transplant a lot of kids seem to have some balance and strength issues (Olivia certainly has these issues) so the trick-or-treating was calm, there wasn't any running or pushing, there were a few minor trips and falls but everyone was okay. At the very end Olivia was breathing a little heavy and I could tell she needed to rest. We slowed down and took our time. She made it almost the entire way but I ended up picking her up and carrying her and Peter the last 500 yards or so. Combined with Peter in the baby bjorn I'm sure we were quite a sight and as I huffed up the hill lugging about 70 lbs of child I regretted not bringing the stroller. We did make it up the hill and I appreciated the work out.

It was really great to see so many of the other kids that Olivia was in the hospital with. I know that Olivia enjoyed the excitement and the change of routine. Everyone got to bed a little late last night and I was really hoping that would mean they would sleep in today but Peter was up bright and early at 6:30 this morning. I was hoping that would mean a longer morning nap today but unfortunately that wasn't the case.

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.