"We are going to focus on LIFE for Katya. I believe, one day, she will amaze the world."

Dr. Ben Carson on Katya Dueck

Monday, April 9, 2012

Three Weeks

Today it has been three weeks since we left our home in the country and headed for the big city. Three long weeks that feel more like several months. Three weeks filled with miracles, three weeks filled with tears, smiles, and laughter. Three weeks of stretching our faith, three weeks of seeing God protect and provide in the darkest moments. Three weeks of missing our Todd and Kristina, three weeks of wondering how we can do this, and knowing that only with God's help and the help of His hands and feet here on eath will it be possible . . .

Three weeks of incredible stress for our family, that has been lightened by the prayers, letters, phone calls, texts, and packages and cards that people have lovingly sent. Three weeks of daily support from the special needs support group in our town which we appreciate more than words can ever, ever say. Three weeks of feeling the warfare raging for our daughter's life and the souls of our family, and three weeks of knowing that God will win in the end, no matter what happens to our earthly bodies. Three weeks of strange foods and three weeks of strange noises waking us up all night long.

And yet in the midst of those three weeks, one thing was a comfort and constant in our life--and that was our room at the Children's House. Clean, airy and comfortable, and ours. And even though the room was small for our family of 4, and then 5, when Katya got out of the hospital, it was enough, and we were happy there. The rest of the house provided a common kitchen, common toys and play area, a generous library with lots and lots of books for all ages, couches for Katya to lay and rest on (which she needs to do a lot) and so on. It was awesome.

Today we lost that constant comfort. Due to an influx of new families coming into JHH we were told we needed to pack  and leave. A friend, Janet, drove 3 hours in with her daughter to help Charity pack and clean as Paul and I were mostly tied up with appointments and tests for Katya this morning at the hospital. We couldn't have done it without Janet's help.

After the van was loaded, I went to check out and settle up our bill. $20 a night for 20 plus nights. I admit, I was struggling with some less than happy feelings. Knowing Katya is very physically weak and needs to spend a large portion of her time laying down and resting made for some not pretty feelings when I contemplated the fact that we were going out into the world without a single place having been found for us yet. I could feel anger pushing and wanting to well up. After all, it's not OUR fault that Katya's care was botched badly by the residents which landed her in PICU fighting for her life, thus extending our time here well beyond what originally had been told to us was a likely scenario.  Why should we be punished for it so to speak by losing our one security during this stressful time? Where could we find a place for our little family of 5 to stay? Mixed in with all this pull towards self-pity and anger was also a sense of curiosity to see what God would do. After all, the office manager for Dr. Carson's office had already spent a good bit of time working the phones and trying to find a safe place for us to stay, and was coming up with dead ends every which direction!

While I was feeling a bit sorry for myself, the secretary for today told me that there was no bill to pay--"It's already taken care of!" After I questioned her, I found out that the entire bill had been settled up by several sources, but all in conjunction with the local special needs support group! I was so totally blown away by that, that it kind of helped me get refocused and stop feeling so sorry for our family.

For awhile (thankfully not real long--maybe 20 minutes?) we aimlessly circled around and around the JHH area, trying to be patient and just wait for God to show His plan to us . . . the phone rang, and it was Dr. Carson's office manager. She finally had found one place nearby that might have a room. The price was very steep . . . but it was a room if we wanted to go speak with them ourselves. We went, not having a lot of options late in the afternoon, and knowing Katya needed to have a place to lay down and rest, not be sitting upright in the car as we drove around and around.

The price was pretty terrible compared to the Children's House, but when I called a family who had called earlier and offered to help pay for a night of lodging for us, they went and paid for the whole first night! (thank you so much!!!!!)  The town house is only available to us for tonight and tomorrow night. If we must stay longer in Baltimore, we will need to trust God to open up more lodging. But for now we are safe and have a roof over our heads. It's hard to stay here compared to the Children's House because it's so un-homelike, and there are no toys, or books or anything for the children to do. There is no comforting library filled with books and the peaceful bubbling of the fish tank. There are no fridges with food to grab, and no friendly faces. No one is here with crafts, therapy dogs or massages, and neither are there free tickets to local attractions for Charity and Chad to enjoy. But we are grateful anyway, for a place to sleep that is safe and clean.  There was even a rocking chair that I put to good use with Katya and she fell asleep quickly when tucket into the twin bed in the room she will share with Charity tonight.

Tomorrow Katya has a 12:00 pm appointment with Dr. D. He will be giving us input on whether or not we can leave town with her and head home. The swelling from the leaking cerebral spinal fluid is not getting less--if anything, it's more. However, Dr. Carson feels she is stable at this point from his perspective as her neurosurgeon,  and can probably be cared for at home for now with weekly labs to monitor her body's response to the meds, and follow up visits with him. We are evidently in this process for awhile to come yet--maybe another 8 to 10 weeks. At this point, it's anyone's guess whether or not Katya will have to have surgery to try to find and repair the leak . . . Dr. Carson is fervently hoping and praying that with prayers it will heal on it's own. But before we can take Katya home, Dr. D. must also release her from his perspective as her plastic surgeon.

And now, I leave you with a photo.

Katya with Dr. D. the day she was released from the hospital.

We are so very grateful to Dr. D. and his careful and thoughtful planning pre-surgery that enabled far  more to be done for Katya to reconstruct her head and face than Dr. Carson had dared hope for! And whenever I look at Katya's head of hair, I am super grateful for the fact that Dr. D. was willing to go way, way, way out of his personal comfort zone to work with Katya's intense desire to keep her hair. I can not wait for the swelling to go away, and her head to heal to the point that we can put her hair into holders again. Right now, her scalp is so sensitive that we don't even think about doing anything with Katya's hair except the most gentle of brushings each day. Some snarls from surgery are still in her hair because her scalp is so tender we don't dare do more than we have already done to try to get them out.


Annie said...

How I sympathize with your feelings! The only other person I ever knew to stay in one of these facilities, was like you - tossed out too soon. She was trying to stay near her daughter who wss in ICU...and in her case there was nothing for it; she had to go home.

I am not sure how this should be handled, but at this point I'm feeling as though it would be better to have a policy allowing anyone coming in, to STAY until they are ready to leave.....or, at the very least, to be quite honest upfront that you might be asked to vacate suddenly and withut warning.

I'm with Katya! I love her soft, fluffy blonde hair!

Milena said...

I can almost not believe my eyes when I look at that photo of Katya! She looks amazing :-) What a good thing that you were able to understand (despite her not talking) how important her hair is for her! And what a gift that she was able to keep her hair!

Such a lovely surprise that your bill was paid for you!

Cerebral spine fluid leaking sounds rather serious to me! Is there at all a possibility that it will heal by itself or will waiting cause Katya more harm? I understand how you wish to avoid more sugery, but I'm still worried :-)

Mike and Christie said...

Even with all the swelling, she looks FANTASTIC! WOW!
So sorry you are still there. That must be so frustrating! Praying for a solution.

Monica @The Mennobrarian said...

Even with the weight loss, she looks beautiful. Anyone could see God's provision in her continuing recovery. I can't begin to imagine how frustrating this is for you, and scary, and all the many feelings of uncertainty you are experiencing. What a blessing to have so many who are concerned for your family and who are being used by the Lord to help during this difficult time. Thank you, Jesus!

Brenda said...

Oh Hope!! I had no idea any of this was going on! Oh how I wish I lived there, I would want to help. Please know.. you are in my prayers. God bless you, and your family.. and especially Katya.

GiggleBug Mama said...

Hi, I know you don't know me, but I live here in baltimore, 10 minutes from JHH. Your entire family is welcome to come stay with us... Free of charge until you leave. My youngest is a longtime patient of dr Carson...


My name is cherie