New Blog for Nathanael

We recently started fundraising with COTA to cover Nathanael's medical expenses, so updates about him will be on his new blog from now on: Please check out the blog, pictures, and opportunities to help, and feel free to pass along the link to others. We appreciate your concern!

Sunday, September 19, 2010

Day +300 and nothing new to report...

So, here we are...300 days post-transplant. Not like that's supposed to be a big milestone, but I think when we started this journey 13 months ago we thought we'd be farther along by this time. Doctors say that it takes 1-2 years to rebuild an immune system, and in the past 200 days or so we've learned why: setbacks.

By all accounts Nathanael sailed through his first 100 days, but after that things got a little more complicated. His central line infection (in March) put us back in the hospital for 2 weeks (and on heavy antibiotics and high-dose steriods - which needed to be weaned over 12 weeks). His bout with autoimmune hemolytic anemia kept us in Cincinnati for a month instead of a week, and put him not only on steriods again, but also on retuximab (which supressed the growth of his B-cells, an important part of the immune system). His two urinary tract infections in the past month have put us in the hospital twice (again on heavy least we're not on high-dose IV steriods anymore!), we've seen his weight fluctuate, and have had to use an NG tube again for a few weeks. Now we're at home, but still giving IV antibiotics (Gentamiacin - at least it's Q24hrs, instead of Q6 or 8!) for another two days. We're also facing a VCUG test to make sure that he's not experiencing any kidney reflux that could be causing these UTIs. Any time a catheter is inserted (as was done for urine collection, and will be done fpr the test) we run the risk that he'll get an infection, so I'm not thrilled about this. We also need to get a surgery date for circumcision and central line removal. (Part of the issue here is that before his lines are removed we need to test out a new form of immune globulin to make sure he tolerates it well. If he doesn't, then we'll have a port put in his chest, but if he does, he can be free of lines!)

So those are a few of our setbacks, but another result of all that is that Nathanael still takes between 8 and 13 oral medications each day (some of them 2x and some 3x daily). Giving them is stressful for all of us (I think it's even hard on Jamison to watch...) as it seems like some awful kind of torture. Despite all my best efforts, the most effective method I've found is to lay Nathanael in my lap, squirt medicine in his mouth, and pinch his nose so when he cries he is forced to swallow. UGH! Yes, I've tried blowing in his face, tickling/kissing him, putting it into the side/back of his mouth, distracting him with Daddy/TV/big brother, hiding it in some of my name it, we've tried it. I may resort to putting an NG tube back before too long. It stinks for my baby to have another tube in him, but giving meds becomes EASY with it in. Even checking placement (a little bit of an irritation) is pretty simple - just get me my stethascope and a clean, empty syringe...all I need to hear is a little "pop" of air in his tummy. So because most of these medications are given to prevent illness/infection, he will need to take them until his T and B cells grow, which could be MANY more months.

Last year I met a woman who spent day +365 back in the hospital with her son, and I was so sad for her. She had been so kind to me on my first day inpatient with Nathanael, and I couldn't imagine being that far post-transplant and having to go back into the hospital, but at this point it actually seems feasible. This really has been a much more difficult journey than I had imagined. I now realize how little I knew about this from when Jeff had his much has changed. It does make me see how God had protected my brother though. How else could he have survived having two older siblings in school, bringing home germs every day? What about the possibility of GVHd with all of the sun exposure? (Or was it just God's providence that we lived in northeast Ohio, where they get fewer days of sun than the pacific northwest?)

So, apart from all of that, Nathanael is a pretty happy little boy. He is quickly becoming more mobile now that he feels better. He is starting to try out an "army crawl" and today reached the edge of his blanket on the floor and grabbed hold of some of Jamison's (large) puzzle pieces. (Of course, I quickly grabbed the pieces and wiped his hands with Wet Ones - away with the germs!) He LOVES to watch his big brother, and he is interested in everything around him. He has started to eat solid foods again (he really liked the mac n cheese in the hospital!), and is now taking sippy cups with both spouts and straws.

Jamison is becoming more and more independent...just ask my mom, who just spent a week with him! He wants to do everything himself, and sometimes that wears me out, and sometimes it warms my heart. He has been asking us recently, "Teach me to pray" so his most common prayer these days is "Dear Jesus, thank you for this day, thank you for this food (yes, even at naptime!), thank you for ______ (loving us, for Nannie getting home safely, etc.). Please give us a good day (or night's sleep), and please use us to glorify your name. In Jesus' name, Amen!" It is so sweet! Of course, what's NOT so sweet is when you want to pray something else and he throws a fit. Sequence is very important to him, so he likes things in the same order each time. And he is very proud that he's growing up into a big boy. He likes to talk about how someday he will grow big enough to reach the ceiling. We just keep reminding him how tall we are, and that someday he'll be as tall as (and hopefully taller than!) we are! ;)
I thought you'd enjoy a few recent pictures of the boys. I'll post some videos later this week, and I've been meaning to find some one-year-old pictures of each of them to post side-by-side...I'd like to see the similiarities and differences, and it would be fun to see how much Jamison has grown.
Please do keep us in prayer, as it's so easy to get discouraged these days. Pray for opportunities for Jamison to play with other kids and to learn to share, for Nathanael to continue to recover and stay healthy, for him to respond well to his new medication, and for the right date for surgery, for Brad and I to be focused on the Lord and caring for our family, and for God to use us in some way to bring glory to Himself through all of this. Thank you for standing with us!

Friday, September 10, 2010

Happy Birthday Nathanael!

Happy Birthday Nathanael!

Since we spent Nathanael's first birthday (August 19) in the hospital we didn't really celebrate at home until later. However, the Child Life staff in the Hematology/Oncology unit made a wonderful banner and put it up in our room (it's now in our living room!) and brought gifts! They offered him a cake, but I decided against ordering a sheet cake for him, as I didn't want to eat it all myself!

So when we finally sat down to open some presents Jamison was more excited about it than Nathanael, but I thought I'd try to chronicle the present-opening. After thoroughly washing Jamison's hands I asked him to help his little brother...and it was so sweet!

While we were at the hospital Brad and Jamison enjoyed a visit with PopPop David and Valerie, and we enjoyed a short visit (and some clean laundry!) when they came down to the hospital. :) Hopefully next time we get together we'll all be in the same place at the same time, and we'll get to celebrate at least one family birthday together!

Okay, so I tried to upload some cute videos, but I'm not sure if they'll work, and I'm having trouble (could be browser-related), so I'll probably try again in a few days. Hope you enjoy the pictures though!


Saturday, September 4, 2010

What do I need now?

Okay, so here's my newest challenge: clear, meaningful communication. Those of you who know me well know that I can use LOTS of words and STILL not communicate a clear message, so this post is an attempt to answer what some of you may be thinking, and in the process to clarify how people can continue to support us as we walk through this phase of our journey. I'll even use bold type to make sure it's clear. :)

I need conversation. I need people to call me. It can be really hard for me to call people, and it's pretty easy for Jamison and Nathanael to take up my whole day...but I need to talk about something other than dinosaurs, volcanoes, Disney characters, and what one animal said to the others. Don't get me wrong - I'm thrilled that Jamison loves to talk to me, and I love that he's so curious about things (He asked me the other day if God could move an active volcano, and when I told him that He could move it into the sea if he wanted to Jamison answered with, "Wouldn't the fire burn up the water?" He was referring to my favorite OT story in his children's Bible where Elijah prays on Mt. Carmel and the fire burns up the whole alter and all the water around it. I LOVE that he thinks that way!) BUT I still need to talk to friends about life, parenting, work, sports...whatever. I do also like to talk about Nathanael's treatment, doctor visits, medications, and how both boys are doing in general.

I need help cleaning and organizing. Because the vast majority of our time (well, mine, Jamison's and Nathanael's) is spent in our house, I am finding that there is a lot of work to be done here to create a calm, relaxing environment. Keeping a clean, organized home has never been my strong suit, and I could use help finding things that work for me. Of course, Brad and I both have moms who are naturally clean and neat, and are great at these things, but only so much can get done during their visits, and then I still have trouble keeping up with the systems set in place. A good friend recently lent me a book on organizing, and I subscribe to, which would be really helpful if I had a way to check email throughout the day for the cleaning reminders.

As a side note, we can have people in the house, but I like to know that whoever is coming over is healthy, that the members of their household are healthy, and then I have them remove their shoes, wash their hands, sit on a sheet on the furniture, and keep their distance from Nathanael. Everything we can do to limit the introduction of new germs into our home (including pet dander) makes it easier to keep the boys healthy.

I need help with random errands. This one occurred to me today when I realized that I have LOTS of plastic bags to be recycled, but I rarely get to a place where I can recycle them. And even though I could get the boys in the car and drive to the store I can't get out and leave them in the car while I run in to drop off the bags. Ugh! Also things like dropping off dry-cleaning, making photocopies of various paperwork for applications for programs like the Medically Dependent Children's Program (MDCP) and mailing things through the post office or FedEx/UPS would be really helpful. Most of these things are rare, but tend to pile up since I can't do them without help.

I need understanding, or compassion, even in the face of confusion. This one must be the most difficult, but I had to at least mention it. I know that many of my friends will not get what it's like to be in my shoes now, and to many my self-imposed restrictions may not make sense at all. However, please consider that everything we do is geared towards protecting the health of our boys, and keeping our family together. With that in mind, I wash my hands MANY times a day (more than I can count, I'm sure) and limit contact between the boys, wash any toys, clothes, burp cloths, etc. that hit the floor before Nathanael can touch them again, change my clothes (and Jamison's) after we play or work outside or in the garage before re-entering the house and sitting on the furniture...ALL so that we limit Nathanael's exposure to new germs. I tell Jamison that we want Nathanael to stay healthy because it helps his recovery, but also because it allows our family to stay together, rather than two of us having to go back to the hospital. I pray that it doesn't scar him (no, that's not a typo...I meant "scar" not "scare") for life, but I feel like I need to be honest with him and to motivate him with something that's not only in Nathanael's best interest, but in his interest as well.

Where is Nathanael in the recovery process?

*He does not take any more IV medications at home! (I do have to flush his central lines daily.)
*He takes 10-12 oral medications each morning and night, and one around 3pm daily. It normally takes me around 30 minutes to get them ready, and an hour or so to give them.
*Most of his labs (drawn every time we see the doctor) look normal, BUT he still has not started to make B cells, and has very few T cells (specialized lymphocytes that play an important role in the immune system). His recovery was set back by the treatment of his autoimmune hemolytic anemia in May.
*If all continues to go well, we expect that in 6-12 months he will have T and B cells, and at that point we'll probably start to expose him to more germs and allow him to be around other people.
*We are moving towards having both central lines removed from his chest, hopefully later this month. That means that one medication will have to be given weekly at home, using small needles and an infusion pump. I never wanted to have to stick my baby with needles, but I'm sure the parents of diabetic kids say the same thing. It would be so good for him to not have those lines anymore though, and to not have to have a port-a-cath in his chest would be nice.

*Both doctors have agreed that we can start to allow Jamison to be around other kids, but only in very controlled situations, and not in places like church. (Feel free to contact me if you're interested in a playdate! I'll have to work around Brad's schedule so he can stay with Nathanael, but Jamison and I would LOVE to get out!)

And why can't I get out more? I'd LOVE to, but at this point it's still difficult for Brad to handle Nathanael (and keep him from pulling on his central lines during diaper changes!), I want to be home when Brad is home (since we don't have a lot of time when all four of us are together), and by the time he gets home in the evening we need to eat dinner, prepare the medicine tray, get Jamison bathed and ready for bed, give Nathanael his medications (which can take anywhere from 30-90 minutes these days) and then collapse into a pile and fall asleep. That takes me from about 5 or 6pm to 10pm or so each day. Afternoon nap time is a time when I can sometimes get out, but that can only really happen on a Sunday (when Brad doesn't have a meeting), or on his day off when I'm not at the hospital with Nathanael. At this point I'm not really comfortable asking someone else to care for the boys during the day, as those central lines in Nathanael's chest still can make ME nervous after 9 months. Oh, and the other major factor for me is that Nathanael still breastfeeds about 6-7 times a day (yes, that is by choice!) and we're not working on weaning in any formal sense of the word. He can drink from a cup, and when he feels good he eats plenty of solid table food (low bacteria only), but when he feels sick he reverts back to a milk-only diet, which he has done for the past couple of weeks.

So I guess I'm asking here that friends would try to put themselves in my shoes: What would you do if every misstep could cost your child his health? How cautious would you be if you knew that your small risks taken for personal gain could land him back in the hospital, pumped full of more medications, setting back his recovery by weeks, or even months? I loved seeing my family in August, but when I thought that he had developed respiratory problems as a result of staying in an old hotel room with very poor air quality I was devastated, and began to blame myself for sacrificing his health for my needs. (As it turned out, he was hospitalized for a urinary tract infection (UTI), and his lungs sound clear (though if he did ingest a mold or fungus we might not see any signs of a problem right could take months to surface.) It is possible that he was irritated by something which caused the coughing.) But having spent many weeks in the hospital (about 9 in the past 9 months), and having talked with many other parents, I know enough to know that each small risk can be costly. I ask each day for Jesus to help me trust Him, and then I live, in whatever way I can, to take care of my family.

Okay, so I just re-read that last part, and while it sounds a little morbid, and more than a little paranoid, but I don't think it's an exaggeration. However, I know that it can also hold true for healthy kids...there's just not such a great risk with exposure to everyday germs and other people.

Most importantly, I need continued prayer. I am exhausted pretty often, overwhelmed by the responsibility of caring for both of my boys, and in need of spiritual refreshment, support, encouragement and a listening ear. In the hospital it's easy to not feel as lonely, because your community is all around you. I used to tell the nurses and social workers that they were my cheerleaders. While in the hospital in Cincinnati we parents would talk in the family lounge, which was helpful. But I haven't been to a church worship service since last year, and miss that time, as well as the fellowship that goes with it. A good friend gave me a copy of "Jesus Calling" by Sarah Young, and that devotional has been incredibly helpful, but it still seems to me that my faith is stagnant rather than growing during this time. Please pray for me, and for my family.

Congratulations if you stayed with me through this long post! I realize it's a lot less clear than I would like it to be, but honestly, I don't have the time or mental energy to edit it, so I'm going to accept that it's far from perfect, and post it anyway. So I welcome your questions or comments, as I also appreciate your friendship and support throughout this journey.