We are almost there...

Shaylins birthday was wonderful! Agh, I cannot believe that she’s 9 now!! I don’t know about other families with medically fragile children, but I know for us it has truly affected every member of this house. While Shaylins birthday was a success it also showed us something we suspected was going on with Shaylin; she won’t rock the boat, she won’t speak up about things that she should. What I mean is she is all about trying to please us, trying to please Alana by giving into whatever Alana might be complaining about. Shaylins birthday was a surprise party a day later then her actual birthday was. We noticed that she didn’t even mention anything about not getting a gift or having a party. She was sad, trying to not cry, but just would not tell us what was wrong (even though we knew). Just trying to please everyone and not make a fuss, my little Shaylin.

Things do continue to change around here with everyone. We have been on the search for a counselor to work with us and the girls in regards to Alanas fascination with death, Shaylins inability to speak up and trust her voice, Noelanis unwillingness to acknowledge that she has a sick sister and all those other issues that have come with having not only a chronically ill child, but a child with no diagnosis and more testing then you can imagine. Things due work out finally though and we find not only 1, but 2 counselors who will work with us separately, and then as a whole unit.

In the meantime Alana needs to have another surgery. This one is to remove an enlarged lymph node from her neck that has been enlarged for years. I remember the first time we noticed it, it was actually my mom who did while she was rubbing Alanas neck trying to calm her down from a fit. We took her into the doctors right away but in the end they said it was just from an illness. After a few years and it getting larger with illnesses, larger than a grape, but no smaller then a blueberry it is decided that it needs to come out and be sent for pathology.

After meeting with the ENT, same one who did her tonsils, adenoids, and PE tubes, he asks us about the ear infections she still is having and the chronic fluid behind her drums. He tells me that when she comes back for pre-op in 3 weeks, if she still has fluid behind the ears she will need to have a second set of PE tubes put in. Okay, well wasn’t expecting that but not a big deal. I am more worried about her neck and the fact that she has such a hard time with general anesthesia. Dr. P goes over how this should be an outpatient procedure, she will spend about 2-3 hours in recovery and then should be well enough to go home right after that.

The day of surgery arrives and at least things are going along smoothly. We’ve been there done that so to speak and as long as the anesthesiologist will read her chart and band and see that she’s allergic to A LOT of tapes and stop trying to stick them to her for her IV we should be good to go!

Once the surgery is over they take me back to recovery to see her and she looks good. She’s still sleeping and they’ve got her O2 going. Right before the surgery Dr. P decided that he wanted her to go upstairs to sleep of the anesthesia and make sure she isn’t having any unexpected breathing problems and due to the fact that it's been hours and she is still sleeping.

Once we are upstairs, it again is only suppose to be for a few more hours, things do change. Sigh. She was sleeping and facing away from me so first I notice her SATs drop a bit, not drastic, but enough that I took notice. After a bit of this I go to move her and as soon as I see her face I see a red, swollen, patchy tomato lying where Alana once was. I don’t even move her but open the door and get the nurse in there within 30 seconds. They give her a push of Benadryl and call the doctor. Now we are in for the night for sure. Long story short, this happens all through the night, her SATs drop, her face swells and she has a pale ring around her nose and her mouth, and they shoot her up with Benadryl. By morning when it’s still happening they are starting to wonder if this is a G.A. or tape reaction or is this something else.

We spend 2 days in the hospital and have no idea what happened. She has done this before, the red face and pale ring around the mouth and nose, and it was after surgery. Hmmm another fish in the sea, symptom to wonder about. Once she is home it still happens over the next day and a half. We stop giving her Benadryl because it’s not helping it, what is helping is getting her up and moving around. It really seems to make at least the red and white patchiness go away. Again…hmmm.

Alana continues with PT and OT and as is now par for the course, things keep changing. After about 2 months of PT once a week the decision comes up to move her PT to twice a week in the hopes that we will see a better improvement? Stability in where she’s at? Something? Well the first session of the new sessions (say that 3 times fast!) ends up telling us a lot. Backing up a bit here, after each PT & OT session she’s falling asleep within 10 minutes of leaving each respective session and sleeping for 2-3 hours. Well after 30 minutes in her second PT of the week, Tuesday and Thursday, she was falling asleep in the pool. Well gee, that’s not good. After that PT she slept for almost 4 hours straight, was asleep even before we left the parking lot.

After that it was thought that we should move the PT down to 30 minutes for each session and see how she does; does she sleep less or is she able to stay awake longer? How is she through the session; is she able to function better both physically and cognitively? Well what we see is that she’s just back to where she was with the original 1 hour session in regards to sleep but…she is able to function through the session itself a bit better. What ends up happening is we stick with the 2, 30 minute sessions. It takes 1 1/2 L of O2 for her to be able to keep her SATs up (95%) enough while she’s in the pool but that’s alright, small steps.

Going back to the lymph node biopsy; the results finally come in from pathology and the cultures grew nothing. Go figure. On top of that the path results are the same, benign lymphatic tissue mass. It depends on the day on how I look at this, some days; we put her through another surgery, that didn’t go great, for no good reason. Other days, we ruled out 3 more things that were slight possibilities.

Can you believe we are almost to the present? As I’ve typed this over this past, well almost a year, there seems like so much but yet so little. It might seem like that’s an awfully long time to recount something but think about this--we’ve been on this journey for over 5 years now. There have been so many labs, 100’s and 100’s, CTs, surgeries, months of long illnesses. So, so, many tears, smiles, sleepless nights, and days of "are we going to make it through this"? There is more to come, we are almost there, to the present, but we are not there yet. Next we meet with Seattle Genetics to go over the “new” Alana. The Alana that we are at today.