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. :)

Recovering well...and planning to go home soon!

"Sleepy Santa" is the talk of the unit this afternoon. As word spread from one nurse to another that he looked so cute sleeping in here, many have stopped by to peek in and look. I love that he is able to make them smile. :) Isn't he precious?

The plan, for now, is to go home (well, back to our Cincinnati apartment) on Thursday! I didn't think I'd feel comfortable enough taking on his care to WANT to leave, but by now I feel I NEED to leave the hospital. Five weeks has been long enough! I also have to keep in mind that 97% of kids from this unit are readmitted at least temporarily. Most likely in the coming weeks or months he will develop a fever and need to come in for a few days. It could happen more than once. Some kids come back long term, but the ones whose parents I've met have different diagnoses than WAS. (In fact, I haven't met any other WAS parents at all.)

Please pray that Nathanael would nurse well. His weight went down two days in a row as we stopped tube feeds during the day in order for him to feel hungry so we could try to return to nursing. His weight came back up a little today, but we want to see it back up just a little more, and we'd like to see him eating better, before we give him so many hours off tube feeding again. He seems to remember how to nurse, I just think his little tummy doesn't have much room, as it has been empty for almost four weeks. The adjustment should take time. So we will go home with the feeding tube still in, and a special pump system to deliver mommy's milk at a rate of 2oz. per hour for 12-16 hours a day/night.

Please pray for a smooth transition out of the hospital. Jeff will be coming from Columbus to help us move, then my parents will come in for the weekend to help me, and when my dad goes back to work my mom will stay.

Would love to write more, but "Santa" just woke up... :)

Still Going Up (by Bree)

Okay, so I couldn't wait until tomorrow to post this: Nathanael's blood counts were still going up as of this morning, which is great news! Here are the two that we're really watching right now:

White Blood Cells - 6.6 (Up from 3.5 on Monday, normal range is 5.0 to 19.5.)
Absolute Neutrophil Count - 5.21 (Up from 1.78 on Monday, normal range is 1.00-9.00.)

More good news is that some of the problems caused by Nathanael's treatment are starting to be resolved. His weight seems to be returning to normal, when it had fluctuated as much as half a kilogram (from 7.14kg (15 lbs 11.3 oz) up to 7.77 kg (17 lbs 1.5 oz) last week, back down to 7.17 kg (15 lbs 12.4 oz), which means that he's no longer retaining so much extra fluid. That probably helped the situation with the low sodium level, which resolved itself several days ago. It also helped his blood pressure, which was high for awhile, and is being treated with amlodipine and diuril, as well as occasional doses of lasix. Probably the biggest problem in recent days has been his low oxygen saturation overnight. To combat it we have given him a dose of decadron at bedtime to help open his airway, and we have used an oxygen mask several inches from his face to "blow by" extra oxygen. So far tonight we have not used ANY extra oxygen, and his saturation has not fallen below 99! (We had a night late last week where his saturation hovered for a short time between 88 and 92, which scared me.) It's encouraging to see these improvements.

The best thing though is that he is starting to feel better - he even smiled a few times! He "played" with the PT, the OT, and the speech pathologist today, and even nursed for a few minutes! :) This was the first time he had nursed in 2 weeks, so I was very pleased. Needless to say, I'm thankful to have a good pump in the hospital, as I've been told that the fact that he gets breastmilk in his feeding tube is helping him, BUT it is MUCH nicer to nurse him that to spend time with the pump. (Seems like I've said that before, but I am so thankful that it looks like he'll take to nursing again that I couldn't help repeating it.) All these things point to his recovery from the mucositis, and to his feeling better in general. Please join us in thanking the Lord for His graciousness to us as our little boy continues to recover. Please also keep the other families here in prayer as you think of us. Many have difficult situations.

We are so thankful for your prayers, and it is our hope and prayer that the Lord will use this in all of our lives to show us His love, and to help us love Him more. Blessings to you as you stand with us through this season.

What stirs your affections for Jesus?

I was challenged by a feature I read in Leadership magazine the other day. Interestingly enough it was an interview with Matt Chandler, pastor of The Village Church, a mega-church in a Dallas suburb, who was recently diagnosed with a brain tumor and whose "Pray for Matt Chandler" page on Facebook has over 31,000 followers less than a week after its creation. In the interview he is asked what it means to "war against sin", and his response is what caught my attention: "We want our people to think beyond simply what's right and wrong. We want them to fill their lives with things that stir their affections for Jesus Christ and, as best they can, to walk away from things that rob those affections..." What a concept!

So when I read this the other day, I felt as though God was challenging me to consider what things really do stir my affection for Christ, and I came up short. I couldn't think of anything. Later, some conversations with old friends caused me to thank God for His work in their lives in ways that I could not have imagined, and suddenly it dawned on me that among other things, like the beauty of nature, God's transformational work in the lives of those around me was what most stirred my heart to love Him more. So today I am thanking God for His work all around me in the lives of others.

I once heard a description of God's work that makes so much sense to me, that I think is worth sharing. It was about getting up in the morning with the knowledge that God is already at work, and that we are to simply join Him in what He is already doing. Scripture tells us that "we are His workmanship, created in Christ Jesus for good works, which God prepared beforehand so that we would walk in them." (Ephesians 2:10) He gives us the privilege to join with Him in His work, and so often I overlook that in favor of fixing my eyes on the minutiae of my own life (or the myopia of focusing on my own life) Did Jesus not say that to gain my own life I must lose it?

Since I've written this post over a several day period, my thoughts feel fractured and disorganized, but I did want to share it with you anyway.

Oh, the other thing I'd like to share is that Nathanael's counts continue to rise. Thank you Jesus!

Here come the white cells! (by Bree)

We have some white cells today! This is the best news I've heard in at least two weeks:

White Cells - 0.4 (They have been at 0.0 for about two weeks or so, normal range is 5.0 to 19.5.)
Absolute Neutrophil Count - 0.08 (Have also been at 0.0, normal range is 1.00-9.00.)

The exact words from my nurse practitioner were, that he's "showing beginning signs of engraftment"...yea! Now, these levels could still fluctuate greatly for awhile before we see continuous improvement, but this is still very encouraging.

We're still watching his sodium levels (checking his kidney function with renal tests - draws every 6 hours or so), and he is only taking in half as much milk as they would normally like him to have, as we're trying to avoid irritating his stomach. Oh, did I mention that his NJ feeding tube has moved up into his stomach? It's now an NG (nasogastric) tube, which is okay in some respects, but could cause problems with his digestion. He also vomited several times on Tuesday, and the most recent time was Wednesday morning, so we'd like his stomach to settle a bit before increasing his milk intake. (Meanwhile I'm stockpiling it in the freezer...at least we'll be able to take it home to use later!) He had a few respiratory issues on Tuesday night, but last night was much better, and he seems a little more like himself today. He even stayed awake to interact with the OT when she came by to see him!

Please continue to pray that his body would heal. I mentioned the issues above, and he also still has signs of mucositis throughout his digestive tract. Since that has an impact on his breathing we're keeping an eye on his oxygen saturation, especially when he sleeps. We also had his feeding tube maneuvered back into his intestines (to bypass his irritated stomach) this afternoon, so he seems to be in a little more pain. Ugh. Pray for safe, restful sleep tonight, and an even better day tomorrow.

Big Smile

I needed to share this picture with you to remind me that sometime soon my little boy will feel well enough to smile again. Right now he's pretty sick - which is normal for this stage in his recovery. That doesn't make it much easier for me to watch though. Please pray for restful, restorative sleep, for engraftment, and for protection from possible illness (Graft vs. Host) and from the medications used to manage his current condition.

This second picture shows one of our pastimes (when we have time!). You can see that Nathanael is thoroughly engrossed in his book - maybe he'll be a reader just like mom, dad and Jamison!