What was most difficult about transplant for me?

So the boys and I got together with a new friend the other day (yay!) and we were talking about the whole transplant experience, the challenges of having your baby in the NICU, and I got to thinking: what was most difficult for me about transplant? I'm not trying to complain here, but I find it therapeutic to get my thoughts out and share them, so here goes:

What has been most difficult for me in the past 21 months is the loneliness/isolation, and great responsibility. What do I mean? Despite lots (and lots and lots) of people praying for me, it feels like only a very few have truly understood what our life has been like. I was used to having a group of friends who could relate to where I was in life, whether that was being home with a small child, having a job that could at times drive me crazy, making a long commute every day, or dealing with relational challenges in my immediate and extended family. Since so few friends have been through transplant (and the BMT world is unlike anything I've known, EVEN with my rather extensive personal experience) it does feel lonely. I also noticed that it was easier for me to have another adult around all the time (like when Mom was living with me in Cincinnati) than to be at home on my own with two little ones all day. The difference that the conversation and company of another adult makes is incredible! I know we tried to limit visitors in the past, and our caution probably made lots of our friends nervous about coming near the boys. Now we just need to move forward out of our isolation, and it really is harder than I though it would be. I see germs everywhere I go. I do look forward to church every week though, and that helps a lot as I get used to germ exposure again.

The "great responsibility" to which I referred was for the bulk of Nathanael's medical care. From birth to three months he required no extra care, and was an "easy" baby who ate well, slept well, and tolerated just being around us while I played with Jamison and prepared for our temporary relocation. However, once treatment started he required LOTS of very specialized care. During our 5.5 week hospital stay the nurses took care of all of this for me, but once we went home I was giving IV meds twice a day, flushing his central line and hep-locking it, giving a dozen or so oral meds (through the NG tube at first, then later by mouth), and running milk through the feeding pump for 8-12 hours every night (oh, and pumping the milk for that purpose, in addition to trying to get him to feed by mouth so we could do less tube-feeding). We also spent two days a week in the outpatient unit, "day hospital" for other infusions, bloodwork, dressing and cap changes for his central lines, and doctor/nurse visits. It was pretty intense for several months. I'm really thankful that my mom was able to stay with us for the first 8 weeks (and my dad came down on weekends to be the designated "baby holder") and then I had another friend come in for a week, and finally Brad and Jamison came back.

Once we moved home quite a few things changed, and we had to readjust to a new system. All of a sudden I had to do much of the same medical care (minus the tube-feeding - yay!) while managing two little boys on my own AND trying to maintain my sanity. We had new nurses, new medical supplies to work with, and a new medical team at a different hospital whose protocols were different. And I don't normally do well with change. Since I felt I had been well-trained I insisted on doing more things myself, and asked others to assist me. It was good, but also stressful. Every week for 8 months or so I personally removed the dressings from his central lines, scrubbed his chest with chlorahexidine and alcohol, placed the BioPatches on his lines, and secured the catheters under new dressings. (I should say I could not have done this without the help of our home health nurses, who were very patient with me, helped me problem-solve through many situations and while using new supplies, and helped me learn a lot.) That ordeal used to take about 30 minutes, during which time everyone in the room had to wear a mask, and Nathanael normally screamed and wailed. Afterward I'd feel exhausted. I used to say that if I drank, THAT would be the perfect time for a beer. (Incidentally, I just don't like the taste of beer...except in other foods.) Compared to that, giving IV meds and flushing his lines was EASY.

The other thing that was stressful, depending on how Nathanael was feeling at a given time, was his oral medications. It used to take about an hour each morning and evening to get all twelve of them into him. When he got sick last fall I think he began to associate his stomach irritation with the meds, and began to fight them. At one point it was taking me THREE hours, both morning and night, to get his medications in. I really, seriously considered putting down a new NG tube just for medications, but the doctors talked me down several times, citing possible harm to him for little discernible benefit. (I did argue that a sane mother was not just a small benefit to my kids.) A few times I did go ahead and put one in, but he'd normally pull it out before I'd get to use it again. Once he felt better it began to take less time, and eventually, as he got older, I could distract him with videos (we love Veggie Tales!) and he would swallow whatever nasty-tasting meds I'd squirt into his mouth. We still use videos (we're now into Kipper the Dog) for taking vitamins and brushing teeth, but now we don't take any more medicines!!! :)

Okay, so this post has been a little depressing, so I have to include some pictures of my boys. I've been told many times this week how adorable they are...and I agree! :)

Me...a skeptic? Okay...I admit it.

Okay...so I admit it...I'm a bit of a skeptic...especially when it comes to medical care. (Anyone remember the surgery I walked out of AFTER I'd been in pre-op for several hours and already had an IV in my hand?) I have learned over the years to be thankful for the doctors into whose care we have entrusted ourselves ...but I still need answers to my (fairly extensive) list of questions. So I arrived at Nathanael's check-up with a full printed page of them. When we saw the doctor she was thrilled with how Nathanael looked, and was so excited to see him. (I love this about her - she's a world renowned expert in her field, who still takes the time to personally care for each patient, and even addresses them directly, despite their young age.)

When I asked the "big question" (i.e. "What does his immune response look like?") she responded with "terrific" and I think tears welled up in my eyes. I have waited 20 months to hear this, and the moment did not disappoint. We spoke at length, maybe 30-40 minutes, and she answered all of our questions. (Of course, since then I have thought of several...I think I'm going to email our RN coordinator this week.) She even said, "Go ahead and treat him like a normal baby." I was floored. "Take him to church?" I asked, hesitantly. "Yes," she said as she smiled confidently, "and even put him in the nursery." Wow. He had NEVER been to our church, and of course, his daddy is the pastor! So his "introduction" to our church family (as well as a re-introduction for Jamison and I, absent the better part of Nathanael's life) was this past Sunday, May 8, Mother's Day. How's that for God's perfect timing?!

But back to the conversation with our doctor: we never did look at the actual lab results together. Given my usual skepticism, I looked at the numbers as soon as Nathanael and I were back in the hospital courtesy van headed home. When I saw them, I was confused. When I saw CD8 (one of his T cell numbers) at 19% I didn' know what to think. How could 19% of ANYTHING be any good? Of course, then I looked at the range, which was listed as 11-32%. Whew! I guess 19% is in the middle of the range...pretty good. Of course, the absolute values made me feel better as well. The CD8 value was 871, and the range listed was 400-2300. So in most of the values he's on the LOW end of normal, but the fact that he's even in the normal range just blows me away. After 17 months of excruciatingly difficult treatment, my baby is well. Thank you Jesus!

While I feel a great sense of relief, there is a sense of fear that has crept into my mind. Yes, I did anticipate this, as we have lived such an isolated life for so long that freedom seems scary. So how do I change my life back to "normal" without my baby - and my big boy, who has basically taken a year off from normal immune development by not getting sick and building up his immunity - getting sick all the time? I have already begun to face this fear head on, as our travels back put us in a situation to eat out with the boys on the way home last Thursday. We left from Cincinnati around 10:30am, and landed in Evansville, IN, where our pilots wanted to eat at Denny's just down the road from the airport. I was a little nervous, but agreed that we could indeed "treat him like a normal child" and take the boys out to eat. (We did still wipe down the table and booster seats first...I'm not going out ASKING for trouble!) I did get a little nervous that there would be smoking, as I've been told that exposure to smoke increases the risk of respiratory illness, and I don't want to increase risks like this, but was quickly reassured by the hostess that there was not. It was also nice that the place was not crowded, and we sat in a corner. So I faced that fear, took some normal precautions, and am "baby-stepping" towards a less isolated, more normal life. Yay! Again, thank you Jesus!

"Getting there is half the fun..."

So by now many of you have heard of our unplanned adventure last weekend as we traveled to Cincinnati for Nathanael's check-up. When we learned on Friday that we had two of the three pilots needed for our trip (through Angel/Grace Flight) we began to look for someone to drive us to Little Rock, AR. (Brad had just undergone a procedure that made driving for any length of time pretty uncomfortable.) Once some friends had been located for the job, I finished packing, put things in the car, and tried to get some sleep.

The next day the boys and I left the house around 6:00am, picked up our friends at their home, and were on our way - planning to meet our pilot around 11:00am. About halfway there we got a call from our pilot, who told us that he had tried to take off from his home in St. Louis, and had to turn back due to turbulence. He apologized profusely, but told me that it was not a good day to fly, as he didn't want any of us to get sick. We called the Angel/Grace Flight on-call coordinator, who told us that we could try on Monday to start again, but could not put together a whole mission (involving three pilots, flight plans - a complicated process) over the weekend. Since our appointment was Wednesday, our friends graciously looked at me and said, "We can keep driving...it's really important that you get there."

We knew my parents were en route from Milwaukee to Cincinnati, so we called them, and they were near Indianapolis. We looked at the map, and decided to both travel towards Tennessee to meet somewhere to help divide up the driving. We kept in contact and continued to check the map, and finally decided to meet in Jackson, TN, about halfway between Memphis and Nashville. We arrived there around 4pm (central time) and made the "hand off" where we moved the boys' car seats and all our stuff from the minivan into my parents' sedan. After we said our goodbyes (and thank you!) to our friends, we started the second half of our journey.

The boys were getting pretty tired and a little crabby. Jamison had not slept since 5:30am when I awakened him, and Nathanael had taken a few short naps in the morning, but was getting pretty tired of his car seat. At one point Jamison finally caved and fell asleep, but Nathanael continued to cry, so my mom sang to him (sitting next to him) until he finally gave up due to sheer exhaustion. Of course, when we arrived around midnight both boys woke up, but went back to sleep before too long.

Needless to say ALL of us were pretty worn out the next day, so after visiting with my parents, and brother and sister-in-law (who came down from Columbus) the boys and I all took naps! We were just SO THANKFUL to be there so we could see the doctor. It was so clearly God's provision that we had generous parties to drive us each half of our trip, AND, looking back, it was so good that we drove when we did, as all of the major highways were still passable at the time (though the flooding along much of our travel route was pretty extensive).

Please do keep in prayer the many people whose lives have been affected by the flooding and storms. Seeing it from the air on the way home was pretty amazing. Some farm houses looked like they were on small islands in the middle of lakes (formerly their fields), and rivers had swelled to twice their normal size.

In spite of how tiring car travel is (for the passengers, let alone the drivers!) we did enjoy our visits with our drivers, so that made the time pass quickly...well, more quickly than it would have without the good company! ;) So praise God with us for His provision for us.