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...

Going "Home"! (by Bree)

We're out of the hospital! In fact, we've been "home" (at our rental place in Cincinnati) for almost a week now, and have been so busy taking care of Nathanael that I haven't taken time to update this page. Of course, I've also taken a little time to sleep, eat, and rest a little. :) It has been great to have a live-in support-system/housekeeper/cook/baby-holder. Since I was on my own with the little guy for 5 weeks in the hospital (don't get me wrong, the staff was great, and many of them helped me out by staying with Nathanael while I ate a meal in the kitchen just down the hall) I have enjoyed the change to a situation with a 2 to 1 caregiver to baby ratio!

Our days are busy: we give 2 medications by IV twice a day (and that process takes about 90 minutes total), four medications twice daily through his NJ (feeding) tube, three more meds three times daily through his NJ tube, and two meds orally (mouthwashes, given on little sponges in his mouth - wish I could catch those facial expressions on camera!). Oh, and we also give him about 24 oz of milk over 12 hours each night through his NJ tube (that means getting up once or twice overnight to add milk to the feeding bag). Did I mention that in between we need to wash syringes for his oral meds, clean pumping supplies and milk storage bottles, do laundry, dishes, cook, eat and sleep? No wonder I need a helper!

Of course we do find time each day to play with Nathanael, and he is a delightful little boy. He is starting to "talk" a little more, he loves to sit up (supported), grab toys, and watch things and people. When we go to the hospital (2-3 days/week) the nurses love to see him. He seems interested in everything around him, and in most ways is growing, healthy, and thriving. The doctors are very pleased with his progress.

Here are a few recent pictures: going home from the hospital, posing for a picture at home with Santa (Uncle Jeff), who came in from Columbus for the afternoon/evening to help us move. It was great to have help with all the stuff we had accumulated in our room. It was also really nice just to order carry-out Chinese for dinner - we ate while Nathanael slept in his car seat. My parents arrived later that night while the visiting nurse was here, and both of them spent the weekend with us. We decided that we didn't want my dad to leave, as we had dubbed him the best baby-soother around - every time he held Nathanael sleep came quickly...sometimes for both of them!

In other good news, Nathanael has remembered how to eat! He is now nursing half a dozen times a day, and doing well! Of course, we continue to feed him milk through his NJ tube, but have reduced his tube-feeding time from 24 hours two weeks ago, down to 16 hours last week, to 12 hours now...yea! Thanks for your prayers! :)

We still miss Brad and Jamison like crazy, and try to talk with them by phone or skype every day, but so far things are going fairly well. God's goodness has been so clearly demonstrated to us in many ways: gifts, letters, packages, prayers, phone calls, good lab reports, strength through tiring days, etc.

We do love to hear from you, and enjoy knowing what is going on in your lives as well. I am thankful that even from a distance we are able to share - even in some small way - this leg of the journey together. Just think of us when you hug your loved ones, and remember to be thankful for them even when they drive you crazy...it's good to have them close enough to hug! I look forward to having that problem again!

Our other good news is that we've had two birthdays and an engagement in our family this week! Joyce's birthday is today (Happy Birthday Nana Joyce!), and Jeff celebrated his birthday on Monday by asking Julie to marry him! We had all been waiting and wondering when this day would come, so we're very excited, and hope to be together to celebrate their wedding day sometime in the next year or so. :)