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, October 31, 2010

Nathanael talking and playing

Vent: I just needed to share this...

Okay, I noticed that in the last several days it helped me to share some of my frustrations with friends who understand our situation and some of its limitations. I'm sharing this now to make myself feel better, and to give a glimpse of our daily ups and downs to others who pray for us and want to understand. So here goes...

In Cincinnati we have one lead doctor, a nurse-practitioner, and a nurse coordinator who help us communicate with that doctor. Of course she is backed up by an excellent team of other doctors, and there are other wonderful NPs and nurses, as well as child-life specialists, social workers, a speech pathologist, nutritionists, etc. Every time we went in for clinic or infusion visits we were seen by a doctor - many times someone else, as our doctor travels internationally on a regular basis. One of my favorite doctors was a hematologist who always wanted to take Nathanael home with her! We also had great experiences with other teams: the pain team docs and nurses, the CVC (central venous catheter) team nurses, the lactation nurses, the pharmacists, radiologists, and many others. They all answered to our doctor, who is both an immunologist AND a blood/marrow transplant specialist, and who handles MANY transplants for children with rare immune deficiency diseases.

Here in Dallas we have a BMT doctor in the Center for Cancer and Blood Disorders, a nurse coordinator, and a team of residents/fellows/nurse practitioners. We also have an immunologist (in the Outpatient Pavilion) who has another nurse coordinator and a team of nurse practitioners. Additionally we have now been referred to a dermatologist (outside the hospital), a team of endocrinologists (inside the hospital), and a general surgeon (who handled the surgery a few weeks ago), as well as the team in Special Procedures, where immunology patients go to get infusions. What's difficult for me right now is that I feel like we have a team with no I end up taking the snap every time. What's the problem, you may ask? I AM NOT A MEDICAL PROFESSIONAL!!!

I realize that our situation may have been complicated by our choice to have the transplant done somewhere else, but I still have no regrets about that choice. I recently found something on the website of a family whose sons had bone marrow transplants at Cincinnati Children's (our visits overlapped a little last year, though I didn't know the family personally), and after losing both sons to the same rare disease they have started a foundation in memory of their boys. Their story is gut-wrenching (get the tissues if you plan to check out their site), but the description of their decision to start fund-raising for an outpatient housing area for transplant patients at CCHMC really sums up much of what we love about the hospital. Below is the link:

"In addition to the knowledge, we thought the team approach to rounds was extremely important and helped reduce the rate of error. By having a doctor from each discipline present, everyone was able to discuss the issues, concerns and plan for each day. Daily rounds typically consisted of between 12-15 people."

Here are two quotes they used from the CCHMC websit that really stood out to me:

"Our multidisciplinary team has performed more than 1,300 transplants in the program’s 20-year history - currently about 80 children each year. In 2009, our experts performed 93 transplants- making us one of the largest programs in the United States."

"The immune deficiency and histiocytosis team at Cincinnati Children’s treats patients with more than 80 different kinds of immune deficiency and histiocytic disorders. Our physicians have developed treatment regimens that improve survival and are now the international standard of care. These specialists manage each stage of patient care, from immunologic testing to bone marrow transplant, if needed."

Having said all that, I do understand that it must be a challenge to be the "caretaker" doctor for someone whose lead doctor is out-of-state, and not available for questions. When I call Cincinnati I almost always talk to the BMT/Immunology Nurse Coordinator (I should have his number on speed-dial by now!) and if he's not around I call our nurse practitioner. They both have access to our doctor, and ask her all the questions they can't answer for me themselves. However, everyone involved in the situation presumably agreed to their assigned role, and I thought that also meant they agreed to communicate with the others involved in Nathanael's care.

If you're still with me, thanks for listening! I don't expect everything to be easy, but there are challenges to our current situation that are different than I had expected...and it helps me to share this with friends so I don't feel so alone.


Tuesday, October 26, 2010

Who is that masked man?

He's looking for places to "pounce"... Anyone want to open their door to a praying mantis before too many other kids are out on Sunday night? Drop me a note to let me know if you're in McKinney and are interested. We'd like to get him out a little bit and he'd love to show off his costume for some friends. :)

Saturday, October 23, 2010

No more heparin syringes in my diaper bag!

This afternoon the house is quiet...what a treat! Since the boys are all fast asleep and it's storming outside, I decided to work and clean in the kitchen. I threw in a load of laundry, washed a bunch of Nathanael's toys, and then decided to organize and consolidate medical supplies.

Now, you know that it's been just over two weeks since Nathanael's line-removal surgery, but it just hit me today: I no longer need to carry heparin syringes in my diaper bag! :) This is one more step towards becoming a more "normal" mom. (Please note that the word normal is in quotes... that's on purpose since I know that normalcy is a relative concept.) For me this is a lot like the time following my second surgery in 2002 when I stopped carrying Neurontin and Oxycontin in my purse: I felt "normal" again. (I'm pretty sure most of my friends don't carry narcotics around, just as they don't carry heparin.)

Don't get me wrong. I feel like I had adjusted to our "new normal" and had learned to be prepared, with Central Venous Catheter emergency kits in our cars and in the house, with heparin and saline syringes with me in case I needed to flush Nathanael's lines while waiting to see the doctor. I even carried Duoderm (extra thin skin protectant) and Hypafix (flexible tape) for when he had an NG tube, as those were the most helpful things we found to keep it in place. I'm just thankful that these things are no longer part of our life. (Well, we could possibly use an NG tube again, but unless he gets sick it's not very likely.)

So today I am thankful that the Lord has closed the chapter that included my little boy having tubes in his chest. We still have a long way to go towards recovery - in many ways - but this is progress.

Oh, and do y'all know anyone who needs 27 syringes with 3mLs of 10u/mL heparin? They don't expire until 2012.

Friday, October 15, 2010

First "real" bath in 11 months!

Here are a few pictures from the past week:

The day before surgery (10/6/10 - with the extra dressing covering the end of the red/left line after it seemed to rupture/break):

In the hospital: isn't the gown just too cute on him?

A few days later, during his first "real" bath in 11 months! (Yes, apart from once when he made such a mess that I HAD to cover his chest with plastic wrap and clean his legs and bottom in a small tub of water, this really was the first time he's ever been allowed to just sit in water and play!) So he's not exactly in a bathtub yet, but this is better than sponge-bathing, which has been necessary in order to protect those dressings on his chest all these months.

These pictures are funny to me because of the way he put his foot up on the edge - he does that in his booster chair too, and he also puts his right foot up in the air when he's really funny!

Here he is showing off his chest - not even a single stitch! (No stitches were used - the lines were so small that the surgeon just let the skin heal without them, and they're now just small scabs.)

Jamison wasn't really too interested in the whole thing, but he LOVES to sit around in his bathrobe after taking a bath. Someday the boys will splash together in the bathtub, but for now this is a significant improvement!

Thursday, October 7, 2010

Lines are out! Let the fun begin!

Thank you for praying for us this morning! Though I was quite nervous, all went very well this morning, from getting up and being on time for our 7:15am check-in, to having BOTH procedures done at once, despite the fact that only one was scheduled, to Nathanael waking up quickly and feeling pretty good immediately after surgery. God blessed us in many ways today and we are very grateful.

Please do continue to pray for Nathanael in the next several days as his incision and line-openings heal. We need to change his diapers as soon as they're wet (and especially if they're dirty!) in order to promote healing and prevent infection. Now all that's left on his chest are a few band-aids covering the holes where those lines went stitches were used! In fact, once his incision and openings heal we can even put him in a real bath and let him splash!!! :)

Thanks again for keeping us covered in prayer today,


Wednesday, October 6, 2010

Pull those lines!

Just an update, for those of you who know how much I am tired of those central lines in Nathanael's chest...please pray for our family tomorrow:

Nathanael's central-line-removal surgery has been rescheduled for tomorrow. I'm pretty sure that one of his lines split this morning while I was flushing it, and I was pretty scared. (I've done this almost every day since January, most days I can do it without thinking much...but today once it happened my hands were shaking.) After hours on the phone with our nurse-coordinators both here and in Cincinnati (also trying to set up consults with a dermatologist and an endocrinologist) I heard back from a surgeon who was willing to do the surgery tomorrow morning while he's on call. This is a blessing, as it needed to be done soon (it had been scheduled for 10/15), now we can go ahead with his immune globulin treatment on Monday (which we would have needed to postpone), and I didn't have to drag both boys in to the hospital today to have the nurse check the line.

Please pray that I would get up on time to leave by 6:00am, that Nathanael would go back to sleep in his car-seat, and would sleep until he gets into the OR, as he'll have to fast after midnight (and it's easier not to eat when you're asleep!), that we would not encounter germs as we enter the general surgery area, and that all the doctors and nurses would be especially cautious because of his lack of an immune system, AND especially that the surgery (line removal and circumcision) - and his recovery - would go smoothly. Oh, and please pray for Brad, Jamison and I, and praise God with us that after 11 months these lines will no longer be part of our lives! :)

Sorry for all the details...but I wanted to share how to pray/praise specifically. Thanks for praying with us!