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.

Somewhere along the way...

Dr. Demain felt that Alana was having sinus issues. Yes, she was a baby and sinus cavities are not formed and yes it’s unlikely that a sinus infection started in her when she was 3 months old but she had signs that lead him to think that. She had developed saddle bags across the bridge of her nose. She had dark circles under her eyes. Labs were done and she was having elevated white counts and CRP levels (C-reactive protein is a measure of inflammation on the body). His theory was that the cough was being caused by drainage dripping down the back of her throat and causing irritation. If we could clear the infection then she should be fine. This was going to be done by starting her on antibiotics above the normal amoxicillin (which we learn she’s allergic to) or z-packs. She had a series of x-rays done to see if the bitty sinuses she did have were compacted. I need to back up though; one of the things that I’ve failed to mention is that by 6 months of age Alana has had so many ear infections that I’ve truly lost count. That tied into Dr. Demains thoughts as well. If she was so blocked up then the ear infections could be a direct relation to her whole head issue. So onward and upward again. He starts her on stronger antibiotics, a 6 week course of Clindamycin. After that we will redo her sinus x-ray and hope that the coughing will stop.

Okay, alright, no worries…the coughing hasn’t stopped. I think she’s even managed to get another ear infection on top of all this. She’s continuing to have multiple things going on here. She’s falling further and further off the growth charts and she’s having rashes on her truck and legs. Her feet have started to peel so bad that she cannot walk; the skin is cracked and bloody. Her teeth have started to come in and they don’t look right. They are tan looking and pitted. We take her to the dentist and they ask if I used a lot of antibiotics while pregnant (no) or if she was a preemie (no, remember the “overcooked” comment). Again, now what the duck chuck is going on. We were seeing either Dr. Demain or her primary pediatrician every week. From her primary we were getting “Kids are sick all the time” or “We see children like this all the time in the office and they outgrow it” finally what became one of my favorites, “If you hear hoofs in the distance you think horse’s not zebra’s”.

All the while we are trying different antibiotics and different approaches. We’ve moved onto drugs like Ceftin, Biaxin, Sulfatrim, Predinsolone, Prevacid, Nasonex, and Albuterol. In a time period from January 2005-January 2006 she was on 17 different or repeat courses. Now tell me, where in the bloody hell was I?? Why didn’t I take more notice that my baby, my 16 monthish daughter, was on more drugs than most geriatric patients?? Yes I understand that again, nothing I can do, can’t go back, shouldn’t beat myself up over things that I didn’t know. The fact still remains that I trusted the doctors and they didn’t come through like they should have. My bad.

Now after 6 months of straight antibiotics things actually get worse. Alana was running a fever for a few days, nothing that unusual, but this time she was different. May of 2005 now and she seemed to be having a hard time breathing. We took her back to the primary and for the first time there is something very clear going on. She has gotten her first pneumonia. We were admitted straight from the primary’s office and she was given more antibiotics, more steroids, and albuterol. She tested negative for RSV, and other bacterial infections. She did however test positive that she had already HAD Epstein-Barr virus. Not that she had it then, but that she’d already had it and gotten rid of it. Now at the time the doctors chalked it up to a mistake with the lab. There was no way that an 18 month old had already contracted and gotten over EBV. Another thing that they take note of with Alana is that she’s again got an elevated CRP level. Normal range is below 12 (normally) and her’s is 30.

We do our time in the hospital and now both Larry and I are asking more questions. More detailed ones. How in the world could she have gotten pneumonia when she’s been on antibiotics for 6 months? How and why is this going on? We leave the hospital and are home for 2 days. She’s running a really high fever again and we rush her back to the doctors. She’s now got “otitis media with perforation”. I don’t know who cried more that day, me or her.

We spend the next months battling infections. Her skin, her ears, her body. We try more drugs. More time. More everything that we are told. The infection in her lungs doesn’t really go away now. She’s always coughing and she’s breathing faster with each little ear infection. She’s constantly miserable and we can seem to do nothing that will help her.

By January of 2006 we go and see an ENT on our own. He looks at her history, she’s at 30 or so ear infections and there’s been some mention that maybe her adenoids are large and causing blockage. That if they are removed, then possibly her sinus cavities can drain and stop the backing up of her face. The ENT we see is great. He feels that PE tubes would have benefited her awhile ago. He also believes that he can look at her adenoids while he’s in doing her ears and if they seem enlarged then he will remove them. We agree and in the middle of January she undergoes her first surgery.

I cried. I admit it. I was a wreck when they took her. She didn’t care. She was in la-la land with the help of some versed. I think when you are waiting for them to come and let you know that everything is A-OK time stands still. It’s so strange. That surgery was the first procedure that she truly had and it was the one I cried the most at. It had been such a long road and when they even hinted that she might be better after this. No more cough, no more ear infections. No more antibiotics. There was hope that this would end.

She pulled through like a champ. They adenoids did need to come out and they were large. Dr. P put the tubes in place and came out and told us how wonderful she had done. We waited to see her. And we waited. We saw kids who went in after her come out and go home and yet we waited. Finally after an hour or more they came and got us. It seemed that Alana didn’t want to wake up. She was quite fine in la-la land and was not to be disturbed. Well this wasn’t good enough for a nurse there. She got the bright idea to wake her up. Mentioning something like, “Oh sometimes they just need a little help waking up…”. Famous last words! Needless to say after Alana screaming her little head off for 45 minutes they decided that she was well enough to go home. Yea thanks lady. We had to listen to that screaming for another 4 hours. Again, looking back this showed us something with Alana that would come in handy in the future. If only I hadn’t been such a slow learner on that one though.