It's been two weeks since our last appointment. Clara had her Hickman taken out, and we have loved watching her flourish. With that thing gone, she has only changed the slightest bit in her behaviors as a result - like sleeping on her tummy now without having to tuck her knees underneath her to protect herself from the clamps cutting into her belly. Really, she doesn't have a clue. But we would look at her and just FEEL that she was different. We've loved giving her a bath every night, and she LOVES taking them. It is always right after dinner and Daddy wipes the majority of dinner off her hands and face while I run the water. She comes tearing around the corner and immediately starts counting 1, 2, 3...weeeee! in anticipation of being put in. I have to remind her that we have to take of her clothes and diaper. She is more than happy to assist by stepping out of her pant legs and pulling her shirt off (recent developments in her abilities).
Yesterday, we took her into the hospital for her normal labs and check of her skin. We got lots of GREAT news.
Her weight is up from 7.75kg to 7.9.
Her length is - longer. Somewhere around 72-75cm. She hates this part and is quite a squirmer.
Her CBC is finally back into the "stellar" category. Her white count is up from 4.2 to 6.4, and her ANC is up from 1400 to 1900.
We asked the nurse practitioner to give us an updated projection of her treatment through the end of the year as our insurance is changing and at this point in time will not cover her care at Stanford past the end of the year. We believe there will be new options available by the end of October so aren't panicking yet. However, I wanted to know what the plans were for her immuno-suppressants and immunizations. The nurse practitioner said she would have a conversation with the doctors and let me know. Answer:
No. More. MMF!
This cuts out an entire month of my anticipated treatment plan for Clara. In fact, if everything continues the way we think it will, Clara will be done with her immuno-suppressants and all of her other meds the day after the baby is born. In 10 weeks, we are expecting a baby and a Clara without and NG or meds. INCREDIBLE!!!
We are planning to go into the hospital for an infusion of IVIG as Clara has remained borderline low for 2 weeks. The doctors want to move us to having appointments every 3 or 4 weeks and so have decided they might as well just give her an IVIG dose so that they don't have to keep bringing us in weekly to see if it does or doesn't dip below her transfusion threshold.
The Boyle household is awfully happy. Without MMF, Alan and I even got to go to bed together for the first time in as long as we can remember. And it was the first time Alan has been to bed before midnight since before she was diagnosed. Alan's parents have been in town this week, and Clara has thoroughly enjoyed tossing Daddy and I off to the side and playing with her newest favorite play things! :-)
Alan took Clara for a walk last Sunday and I drove to meet them at a county park. Clara is walking well enough now that we let her out of her stroller and let her walk around on a couple of cemented areas. Fortunately, she was excited enough by the fact that she could just walk and walk and walk in this expansive area, that she didn't start bending over to touch things (which is a no-no for her) until after we had been there for a while. Of course, most of the pictures are of her from behind. She was like a little Energizer Bunny. Going and going and going.
Look! I have my shoes on and I can walk OUTSIDE!
No-No, Clara. Stay out of the dirt!
See y'all later!
No, that is not a basketball in Mommy's shirt...that's my baby sister!
So that we will never forget and so that you all can see how tolerant and amazing our daughter is, I give you: Clara's last dressing change of her Hickman central IV line.
Looking a bit beaten up and worse for wear but VERY excited about this day! We were waiting for the Nurse Practitioner to come take a look at Clara's skin for her weekly appointment before heading downstairs to wait in yet another exam room in preparation for her Hickman removal procedure. It was a much more fun day for all involved because Daddy was with us! It made it much easier on Mommy and much more fun for Clara since she wasn't allowed to eat or drink until after her 12 noon procedure.
This is what Clara's Hickman looks like. The catheter (IV line) is actually in her heart and comes out of her subclavian artery in her neck and then in is tunneled just under the skin. It comes out on her chest just above her nipple where you see a little bluish circle called a biopatch with writing on it. The biopatch helps protect the open hole in her chest where the tube comes out. The biopatch and part of the tube are then covered by a square, transparent, shiny adhesive dressing. We then loop the catheter (because it is really too long for her little body) right back on top of the dressing and hold it in place there with the long piece of white foam tape. You can then see it runs down her torso between her nipples before it splits into 2 lines - one smaller and one larger in volume. At the point that it splits, we snap the lines into a stat-lock which has the butterfly-like wings coming off of it. This helps secure the line to her body and takes any impact or pulling that might happen on the line without pulling the IV out of her body. The two pieces hanging at the end have little blue caps that allow you to screw on syringes for infusion or for drawing blood. The blue caps also act as a mechanism for preventing blood to flow out. The blue caps had to be changed out for new ones twice a week. And just in case of possible failure of the blue caps, there are two white clamps just before the blue caps that clamp the line shut so that blood won't flow out. All of this has been attached to her torso since November of last year. Since you don't want water to creep just underneath the transparent dressing, we would have to cover ALL of this with GLAD Press and Seal Wrap if we wanted to bathe her. That was quite a hassle, and although it was an incredible discovery to learn that Press and Seal clings to skin so well, it was still a dangerous undertaking and a bit difficult on a moving squirming baby - even if she was fairly still. So glad to see this thing go now that it is really no longer needed. It was just in the way, a source of potential infection, prevented her from having a real bath, was no longer drawing blood dependably for her lab appointments, and required daily "flushing" of the line with heparin to prevent blood from clotting inside the catheter line. As of September 1, 2011 - Bye Bye Hickman!
Clara's procedure went well as far as we know. We did not get to speak with the surgeon after her procedure. In fact, when they called us to Recovery, we found Clara lying on her bed with one hand behind her head (the other still had an IV in the inner elbow) watching fish in an aquarium on TV while listening to classical music. The nurse had turned on exactly what she would have asked for. She didn't have a pacifier in her mouth or her bunny thumbie or Tutu snuggled next to her. She was completely chill and hardly even showed excitement when she saw Alan and I walking up. By the time I got to her bedside, she looked at me and made her fish mouth to tell me she was watching the fishes! I was astonished and exclaimed, "Fish! That's right, Bug! You are watching the fish!" I was quite near tears. At that moment, the nurse began removing Clara's IV. Clara tightened her eyes and turned her head towards me with a few whimpers and fusses - she didn't move otherwise. I was so impressed that she seemed to know it would be short-lived pain as the tape came off and a new pressure bandage applied.
I then realized, the only thing she would still be hooked up to at that point was the heart monitor, a blood pressure cuff on one calf, and an oxygen saturation sticker on her foot. I looked at the nurse to confirm she was okay with me picking her up and got a yes. She was unhooked from everything within a few seconds and all we were waiting for was a written note from a Dr. to let Clara go home. It was so amazing to know she was free. Clara took a graham cracker and began hungrily munching as we dressed her to go home.
We were required to wait 48 hours before giving Clara a tub bath which meant Saturday, September 3rd was Clara's first bath since she was 4 months old!
We cheated a little on Friday by putting the trusted GLAD Press and Seal over the teeny, tiny boo-boo on her chest. It completely sealed it from moisture and allowed Clara to get in the shower with Daddy! Alan's parents bathed him by putting him in the shower with his Dad, and it was something Alan always wanted to do with Clara. She has been standing tub side with great interest for about a month now watching the water flow from the faucet and shower head, and Alan would always create a little stream of water for her to touch with her outreached hand. She even seemed excited by any splashes she would get on her face. It was such a great treat to let her be able to get in WITH Daddy on Friday morning. Plus, we knew it would be a good transition just in case she had any apprehension for the tub bath on Saturday.
Saturday's bath with her brand new bath toys (and there are more coming in the mail) was so much fun! Alan demonstrated splashing once, and then we couldn't get her to stop. She loves the ducky squirting water on her torso and figured out how to stick the letters and numbers on the side of the tub by simple observation of us spelling her name on the side. It is also great fun to submerge the duck, frog, and cup.
Tonight's bath was initiated by Clara. She kept declaring bath as best she knew how "Da!" and nodding emphatically when I asked if she wanted to take a bath. I couldn't run the water fast enough and she was trying so hard to climb into the bathtub to join me as I got in. The best part of the bath tonight was when we discovered she LOVES to have water poured over her head and face. We had taken her NG out earlier today because we needed to switch to the other side. She was completely tube free and LOVING being in the water. "Gihn! Gihn!" She would say as soon as the water stopped pouring. She would slightly duck her head, close her eyes, open her mouth as wide as possible with her tongue sticking out and as big a smile as one can manage with your mouth wide open. It was so sad to end it after about half an hour as it got late and the water got cold. She was NOT okay with bath time being over, but we had to wind things down and allot time for a new NG placement, plus recovery time after that kind of trauma.
She handled it like a champ, and Alan and I discussed what a big girl she is. She is so used to the NG now that once it is in place, she completely forgets about it. We loved seeing her face for a few hours today and I am kicking myself for not having the camera capture the whole day and the bathtime. I was in the tub with her tonight and didn't even think about having Alan grab the camera. Hopefully only 3 more months and we will be done with ALL her tubes. Until then, we are thankful the NG can be there to make taking so many meds almost worry free.
Life is full of so many moments of progress and continual steps towards normalcy. We got the good news that because Clara's skin has looked so good for the past 3 weeks that we only have to go in for lab and clinic appointments every 2 weeks! That means Clara will only have to get poked in her arm every other week, it will be easier for this very pregnant lady, and Alan will only have to take off a morning every 2 weeks to help me get her to and through her appointments.
Thank you again to everyone. Your support during all of this has meant so much to us. We still struggle with frustrations and exhaustion and some depression as we continue with Clara's recovery - but we are in such a wonderful place right now and your support has helped carry us to where we are and get through what we have left over the next few months. I think we can handle a few more months of an NG tube....And then life should be completely normal as we welcome Baby Girl #2 to the family and enjoy an incredible Holiday Season as a happy, healthy family!
