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!

Tuesday, January 26, 2010

Visiting Friends (in the Hospital)

Well, Nathanael must have decided that he missed his friends in the BMT Unit at the hospital, because this week we spent a few days there. It started with him being a little more fussy than usual, then an unplanned visit to "day hospital", the outpatient unit for kids being treated on the Hematology/Oncology floor, and then a visit to the Emergency Department (ED, not ER anymore...) on Sunday, which culminated in our admission back to 5A North, the BMT (Blood/Marrow Transplant) Unit.

In addition to the symptoms we noticed, the doc who saw us Sunday appreciated that Nathanael's fontanelle, or soft spot, was bulging, so he ordered a head CT to rule out a brain bleed, and a spinal tap (now known as a lumbar puncture, or "LP" for short) to rule out meningitis. UGH! The CT went fine, as the little guy slept through it, but I was really scared of the LP. (As a side note, those of you who know me well know that I have a bit of a fear of nerve damage (previous experience with it has been frustrating), and had hoped to avoid epidural or spinal anesthesia for myself with both of my deliveries, and of course was unable to do so. My experience the first time was not positive, while the second time was not so bad.) HOWEVER, that's all to say that I was NOT in favor of someone sticking a needle into the spine of my baby, for fear of the damage that can occur with such procedures. I prayed silently for strength, and for the doctor to be skillful, and asked questions about the necessity of the test. After being convinced by the doctor and my husband that the test was necessary, I relaxed a bit. Nathanael handled it like a champ - he cried less than he did for the placement of his NJ (feeding) tube! The doctor took a few minutes to find a suitable place, then had an attending come in to get his assessment, and once the nurse and I held Nathanael still for the actual procedure, it was done in a matter of minutes. I was SO THANKFUL!

So the head CT and LP both came back negative, which is to say that he did not have a brain bleed or meningitis. They still decided to admit him, however, to treat him with IV antibiotics and to watch his symptoms more closely. We had noticed over the weekend that despite what we had been told about how his condition (including his behavior/personality) should have improved, he continued to be very fussy, to experience what felt to us like abdominal spasms or dry heaves, and that he was not at all interested in eating. When we called the BMT doctor on call Sunday morning he told us to come in so Nathanael could be seen, and at that time we put our overnight bag in the car (and I took a quick shower!) just in case.

So we ended up staying inpatient from Sunday night through Wednesday around 2:00pm. It wasn't too bad, as I had my mom around to bring food, to come up and watch Nathanael with me during the day, and it was less stressful than our previous experience, in most ways. It was however, tough to get sleep, difficult to have Nathanael's sleep interrupted by hospital routines, and all of a sudden I was not in control of his medications, which was simultaneously liberating and challenging. I could write more about all of this...but for the sake of time I'll cut to the chase: it's good to be back "home" in our apartment. It's lots of work to take care of a baby who needs so many medications, but I would MUCH rather keep him at home than stay in the hospital, and I am SO THANKFUL that the Lord has allowed us to get back home so quickly. Thank you for your prayers!

Oh, and as for the title of the post, it was great to see some of the friends we had made during our earlier extended stay, but we left them with a picture of him, and in the hopes that we'll just visit them sometime when we're in for the day, rather than during another inpatient stay. ;)
Jusi in case you're wonderimg, this picture was taken a home, with Nathanael's new NG tube in place...but that's another story...

Sunday, January 17, 2010

The Perfect Storm

If I had written this a week ago I might have titled it "Smooth Sailing...", but this week a number of circumstances came together to create "the perfect storm" that rocked our little boat quite a bit.

We were sailing along - doing well enough that Nathanael's doctor thinks we may be able to go "home home" (to Texas) in early March instead of late March - until our little guy began to eat less and less. His labs showed that his kidney function was somewhat diminished, not enough to normally be of concern, but an issue for him because of the number of medications he still takes every day. The bottom line is that he needs adequate food (fluids) in order for his body to properly flush his kidneys. So when he went from 70+ minutes of nursing each day down to less than 40 minutes, we were obviously concerned.

So what's going on? We suspect that he's been teething for the past month, but that it has gotten much more intense in the last week. Teething often causes babies to nurse or eat less often, and for a normal infant, that's not a big deal...they'll self-regulate and eat as much as they need. However, as I mentioned above, Nathanael doesn't have the luxury of choosing not to eat and being okay. He needs to stay fully hydrated!

We also know that as the doctors wean him off the steroids he's been taking for the past 7 weeks or so his appetite will change. Steroids tend to cause an increase in appetite, so it makes sense that as he has lower levels of steroids in his system he will want to eat less often. My first thought in regards to that was that we should wean the steroids more slowly...but really, why would I want to subject my son to the effects of medications for a moment longer than the doctors deem necessary? Just because nursing is easier for me than tube-feeding? Certainly not.

Oh, and then we spent two days last week in the (outpatient) day hospital that were each 8 hours long...back to back! We normally have a day in between appointments, but the schedule this week was different. That interrupted his sleep, so he did not nap well at all on those days. While I might eat regardless of how tired I am, some people tend not to eat as much when they're that could have had an impact on his consumption this week.

So, in order to keep him hydrated we have increased the amount of milk he gets each night through his feeding tube, which in turn could cause him to be less interested in nursing. Like everything in the treatment regimen here, the goal is to find a balance between the two types of feeding. For me, this means nursing him as often as he will nurse, and also making/finding time to pump so I have 15 oz. of milk available for him each night. I'm so glad I have my mom here to help with cooking, cleaning, and baby-holding so I can get everything done! (Of course, I'm also thankful for my dad's help each weekend, and for my mother-in-law's help in Texas, as well as the many friends who continue to support us through this time.)

So, for those of you who read my recent Facebook post, I AM thankful for pumps: the feeding pump, the breast pump, and the medication pump, as despite their inconveniences (loud beeping, etc.) they all play a role in my son's recovery, and enable me to care for him at home.

Despite the situation I've described, Nathanael continues to do really well. His blood counts continue to improve, he shows no signs of Graft vs. Host disease, he is doing fantastic with regards to normal developmental milestones, and he is a happy little boy. The doctors expect him to have a fully functional immune system in another year or so, which is really exciting. Praise God as He continues to answer our prayers in ways we could not have imagined!

I've included a few pictures to show how much both of our little boys are growing up! I hope you enjoy them - even the ones that turn sideways, despite my best efforts to fix them.

(Oh, and you also might notice that Nathanael's cheeks are growing, and his eyebrows are getting darker. Both are temporary side effects of his medications.)

Sunday, January 3, 2010

Busy Week (by Bree)

Happy New Year! Mom, Nathanael and I enjoyed a long weekend visit from my dad, and we've spent lots of time on Skype talking to Brad and Jamison. I'm including a few pictures taken with the webcam so you can see how much Jamison has grown up in the past two months. He even likes to play "doctor" with Elmo, and sometimes with Daddy!

Nathanael is doing well...we've been "home" for almost 3 weeks now! Medical care and cleaning keep us busy, and my newest challenge is dealing with some cold sores (mine). Sounds minor, but since they're caused by an underlying virus (probably one I've had since childhood) they could be very dangerous to Nathanael, so for over a week I've been wearing a mask when I hold him. It reminds me not to kiss him, and keeps me from touching my face and then touching him. Not fun, but necessary to keep him safe. Doctors tell us that viruses are very dangerous to him, as they're so difficult to treat.

This week will be busy, as we have appointments at the hospital three days instead of two. Next week we should go back to a schedule of Wednesdays and Fridays at the hospital, with visiting nurses coming to the apartment on Monday and Thursday mornings to draw blood for labs. Days at home are easier for us, and allow Nathanael to sleep whenever he needs to, rather than have his sleep interrupted, and that makes those days much nicer for everyone!

Thanks for your continued prayers! Also, thanks for the letters, emails and cards - we love to hear from you, and I'm trying to improve my communication with others...not making any official new year's resolutions though... ;)