Today's the day...

What a busy day yesterday was! I picked up the Sequel (a portable O2 concentrator) for our trip and I am going to have her use it today while we are around town to make sure we are all comfortable with it before we leave tonight. It's bulky and to be honest, I like her ladybug better!

She was so bloody cute yesterday when her friends James and Dylon came over. She hasn't seen them in a awhile and they brought her over a wonderful stuffed giraffe and the whole family prayed over it before they gave it to her so it was meaningful on so many levels. They played upstairs then went outside on the swing set and she was giggling and hugging them. She had taken off her O2 right as they got here...she thinks it makes her look funny, and for the 10-15 minutes that they were playing she was short of breath but refusing to settle down (I wasn't trying very hard to make her I admit) and as soon as they were gone and she put it on she was breathing a bit better but PT ended up being rough.

So today is finally here. I've got a few last minute things to take care of and hope to have a really good day with all of the girls. We leave late tonight so I will update again after her first appointment tomorrow afternoon.

“Each time we face our fear, we gain strength, courage, and confidence in the doing.”

Seattle--again...

After all the ups and downs there is still things that have to be done and that includes the next big test she has to have. Every 6 months to a year Alana has to have an ECHO and EKG done to look at her heart. This is for a couple of reasons but the most important one is to look for pulmonary hypertension. When children, or anyone for that matter, is on O2 it is something that you need to keep an eye on and she in no different. I really like her heart doctor. He’s told me on more than one occasion I am Alana’s advocate, that if we are not making headway with someone to move on or make more noise until we do make some headway.

It’s nice when I can report great news here and so after having her ECHO and EKG the doctor told me the results right there, her heart looks great! Whooo HOOO! There’s no evidence of PH and everything else looks good. She’s still has her murmur and we are told to keep a close eye on the episodes of tachy and bradycardia that she’s having and if things get any worse or we notice fainting spells or other to bring her back right away. Otherwise we are good for 6-12 months. It’s so nice to have an appointment go smoothly and to leave with no thoughts of bad news to share. This was just last month so guess what?! We are here now, the present; crazy huh?

I’ve now been kicked back in my chair for awhile trying to think of where to start…she’s still having bad days, a lot of them in fact. To summarize this month in regards to her and her illness it’s been slow going. She’s been having fevers closer together and had a good set this weekend. As well as that she’s been really struggling with PT to the point that she was over 2 ltrs of O2 and still struggling to breath. I sit at poolside and watch her try with all her might to swim with help from a float or other and she cannot do it. Her feet and her hands no longer work in coordination with her mind. It makes me cry at night.

She went into McDr (yes, we are now calling her McDr, Dr. McArthur, according to Alana) today to see if she has developed pneumonia again because she’s coughing way more then she was even 5 days ago, she’s running fevers, she’s pale, and she’s needing O2 at higher flow rates. The good news is, that just from looking at the x-ray and not having the radiologist report yet, it looks OK. There are still infiltrates in her left lobe but they are always shifting and there. Tomorrow we should have the full report and will make the decision to start antibiotics.

We did talk about her increased lack of coordination, the fact that it’s been months now since the cough started again and then the biggie that she’s not gaining weight again. And in again I mean in the past 2 years. She still has not gained back the weight that she lost in October and December and in the words of the dietitian, her growth is “stagnant” all the way around. We’ve heard mention, from some of her other doctors that a NG or G-tube might be in her future but I’ve been resistant to think about it. I don’t know how long that can keep happening though. I was looking through photos of her way back in Craig when she was 3 and she has on this jacket that my mom made, well this weekend she was wearing that same jacket and it was still a bit big on her. *sigh* McDr said today that we might have to talk about this soon, like in a few weeks. If we do an NG tube and she gains weight then she will have to have a permanent g-tube placed to help her in the long run. Not something I want to think about right now.

McDr also mentions “progressive” again. I did it, I couldn’t help it; I started to cry. Please someone explain to me why I can’t seem to hear that word and not get upset?! I get it though, her increased loss of coordination, her increased O2, her increase in autonomic issues, her increased motility issues, the fatigue, the fevers being closer together, they all scream progression. Don’t cry just breath, right?

Another thing that I haven’t mentioned is that next week we leave for Seattle Childrens again. If you recall the last update I mentioned this and it’s now that time. Her appointments start on the 10th and we have no idea how long they will last. We are meeting with this guru on mitochondrial and other metabolic diseases and she will be having another surgery, this time a thigh muscle biopsy. No word on what day that is going to happen as we are meeting with the surgeon and the GA clinic on Thursday to see what they think about her going through another surgery. It will be while we are down there (don’t get me started on Seattle Childrens again!) is all we’ve been told.

So as usual we have a lot going on around here. Its summer break and the other 2 chicky-poos are home and I love having them around to myself during the days and taking them places with me. They are all giggling upstairs right now and its music to my ears! They are supposed to be folding their laundry but I think I will let it slide that they are not and in its place they are playing with each other.

Now that we are in the now, the present, the moment I will be doing the updates as they happen. The laptop is coming with me to Seattle so that will make things easy to keep current, also, here’s another link that I will be using while we are having “issues” or in-patient stays:

http://www.caringbridge.org/visit/alanastephens

On that page you can sign up for automatic updates whenever I post something. I will still always be on here, but it’s nice to have automatic updates when we are going through something big with her.

Seattle Genetics

After confirmation of Alana’s new issues (low muscle tone, RR & HR issues, de-SATs, etc.) the referral to Genetics was pretty easy so on March 25th we met with Dr. Wallace from Seattle Childrens Genetics department here at the Alaska Clinic. Dr. Wallace was very nice, and seemed genuinely interested in Alana’s health and background. She did come in with a short list of things she felt Alana might have, Hyper IGD, Muckle-Wells, TRAPS, Mitochondrial disorder, and a few others. I was able to knock off a couple right away due to gene testing but a couple still remained, Muckle-Wells & Mitochondrial disease.

During the physical examination portion of the visit she pointed out things with Alana that we never really noticed, for instance, her eyes are a different shape then all of ours, her hair is sparser and coarser as well. She has a single palmar line on her hand (simian crease) were as no one else, all the way up to grandparents & aunties and uncles, do not, and a few other physical features. Then there were things confirmed that we did know, her hands and feet can be burning hot and red while her core is 96 degrees. She has rash “spots” on her body, almost eczema like in nature but do not respond to meds, she has mild over lapping toes and the list continues.

One thing that we were grateful for was that she noticed Alana’s teeth. They’ve been a concern of ours for awhile now as they are chipping away from the bottom up and pitted. The dentist keeps a close eye on her in regards to this, the technical term is Hypoplasia enamel and it’s just what it sounds like, low to no enamel on her teeth. The doctor thinks that this may be a clue as to what’s been going on with Alana all along but until more tests are done there’s no way to know for sure.

What ends up happening are 2 things, 1: Alana does a couple of special urinalysis’s to look at Muckle-Wells and Mitochondrial disorders. 2: If the testing for Muckle-Wells comes back negative then we will have a referral to see a mitochondrial specialist in Seattle and look down that alley. Here is some brief information on both diseases so you can see what we were looking at:

Muckle-Wells syndrome is a disorder characterized by periodic episodes of skin rash, fever, and joint pain. Progressive hearing loss and kidney damage also occur in this disorder. People with Muckle-Wells syndrome have recurrent "flare-ups" that begin during infancy or early childhood. These episodes may appear to arise spontaneously or be triggered by cold, heat, fatigue, or other stresses. Affected individuals typically develop a non-itchy rash, mild to moderate fever, painful and swollen joints, and in some cases redness in the whites of the eyes (conjunctivitis). Hearing loss caused by progressive nerve damage (sensorineural deafness) typically becomes apparent during the teenage years. Abnormal deposits of a protein called amyloid (amyloidosis) cause progressive kidney damage in about one-third of people with Muckle-Wells syndrome; these deposits may also damage other organs. In addition, pigmented skin lesions may occur in affected individuals.

Mitochondrial diseases result from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. The disease primarily affects children, but adult onset is becoming more and more common. Diseases of the mitochondria appear to cause the most damage to cells of the brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems.
Depending on which cells are affected, symptoms may include loss of motor control, muscle weakness and pain, gastro-intestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual/hearing problems, lactic acidosis, developmental delays and susceptibility to infection.

Either way you shake it they were scary things to look at. After waiting a few weeks the urinalysis came back and they were normal. Go figure. That did mean that we needed to start the next step, meeting with the doctor in Seattle about the mitochondrial disease.

While that is in the works things just keep on keeping on. Alana is working on another flare up and we are trying to keep her comfortable and most of all, out of the hospital. Her cough is increasing again, and the fevers are coming much faster and closer than they have in the past. She’s sleeping for 4-5 hours after PT and OT isn’t much better. She’s on 1.5 liters of O2 to function enough to do PT and OT but she’s still having incredible amounts of fatigue, not eating well nor drinking, mumbling and not making sense when she’s talking, de-SATing for no reason, chest rattles, rashes, red, angry spots on her tongue, and motility issues that are causing her a lot of pain.

Things stay this way and weeks go by with no change. Finally I bring her into the ped’s office and it’s just that, it’s just Alana unfortunately. The great news is that she’s able to stay out of the hospital and we just keep an eye on her. This works out well because she has an ECHO and EKG coming up as well as her patch testing for her allergies. Oh yippee right!

First is her allergy testing and this always makes me nervous. At the appointment I mention the bowel problems and pain she is having so Dr. Demain believes that we need to repeat the whole 21 food panel on her to make sure she’s not responding to wheat, milk, or soy which are known conspirators. This makes me even more nervous…what if she tests positive to those as well as the foods she’s already off; beef, chicken, pork, turkey, corn, carrots, rice, oats, eggs.

The patches go on Monday, off on Wednesday, and then final read on Thursday. No PT this week because they cannot get wet so yes, that also means no shower or bath for this water baby. By Monday night it was apparent that her back was itching and hurting. Argh.

Long story short the final read was typical Alana. Untypical. Dr. Demain could only think of 1 other child that he’d ever tested that was somewhat similar to what was going on. Great news, we tested negative to some foods. Bad news, she tested positive to some new foods. Here was the new list: beef, pork, wheat, soy, barley, rye, oat, & peas. Starting in 1 month we could pick one of these foods to try and reintroduce; rice, corn, eggs, chicken, turkey, & carrots. We could do one food, teaspoon a week over 3 weeks, and watch to see how she responds. *sigh*



You literally win some, you lose some. Up next; ECHO & EKG.

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.

PT & OT here we come...

Things do continue in the same fashion as they have been, unfortunately. Her baseline is officially changed now from mediocre to crappy. On top of that she is having a harder time with shortness of breath, fatigue, and eating. Even at this point she has not gained back the weight that she lost over this last illness and she’s coughing more. Something new that does come up is a physical therapy evaluation. This is done for a few reasons, her fatigue, the evidence of muscle weakness and/or wasting, and her overall wellness level. We meet with a wonderful PT, Mrs. J, and after a few sessions with Alana she requests that another gal, an OT who works with children who have lung/breathing/heart issues sit in and give her input as well in regards to some issues Mrs. J is seeing in regards to Alana and her breathing issues. I am fine with this because heck, maybe she will notice something that can help.
Here is what they had to say in their report to the doctors:

“Alana is a bright and engaging 5 year old little girl” (okay, had to put that in here that that was the first thing they said =)

“Alana had difficulties coordinating co-contraction of her trunk for stability when attempts were made by therapist to elicit. Endurance is quite poor as a 5 year old child should be able to participate in an hour of sub-aerobic physical activity without immediately falling asleep upon cessation. However this lack of endurance doesn’t appear to be simply due to de-conditioning as Alana tries to be an active child. Alana appears to be a very busy active child with endless energy. However, it seems to this therapist that it is easier for Alana to remain in motion then to do stationary tasks that require core stability and subtle grading of muscle control.”

“Alana does demonstrate difficulties with coordination of her body following several minutes of sustained activity. At today’s evaluation Alana was propelling herself around the pool wearing floatation with nice coordinated movements of her upper and lower extremities initially. However, following 2.5 minutes of sustained activity Alana was no longer able to coordinate her movements and resorted to flailing type movements of her arms and legs to attempt to continue the activity because she wanted to”

“Alana demonstrates 85% open mouthed breathing but with increased demands she closes her mouth and creates a valsalva to increase intrathoracic pressure thereby increase her strength and stability. Her cough is non-productive with limited intra-abdominal pressure. Her mother reports that she will cough so long that she turns cyanotic. When asked to take deep breathes or after breathing increased for activity demands Alana demonstrated paradoxical breathing, this means that she activates her diaphragm on expiration not inspiration, limiting the volume of air she can inspire.”

Summary

Alana demonstrates:
1. Significant low tone especially abdominal muscles, also indicated by mild rib flares.
2. Mild to moderate dysregulated autonomic nervous system: indicated by inconsistent pulse, oxygen saturation levels not tied into activity needs, erratic temperature regulation and breathing pattern (several quick/shallow breathes and then large breath).
3. Inefficient breathing patterns. The diaphragm, intercostals, external/internal obliques, rectus abdominis are the predominant muscle in efficient breathing patterns doing approximately 60% of the work, while accessory muscles such as the paraspinals, pectoralis muscles, serratus anterior, scalenes, SCM, and trapezius are recruited for increased oxygen needs. Alana also demonstrates paradoxical breathing.
4. Possible undiagnosed venous return disorder. Red flags include constant movement without sensory seeking quality, desaturation without movement, and sitting down/flailing limbs with fatigue.

They did her SATs before and after PT and before (without O2) she was at 94%, after she was 86% and stayed that way for awhile. This was a very clear indication to us that she needed to be on O2 more than we had been putting her on it. This report went to her doctors not only here, but in Cincinnati as well. Within a day we heard from the pulmonologist in Cincy to discuss this “significant change in her status” in regards to her O2, muscles, and fatigue. Well HELLO! We’ve only been telling you she’s been having these issues for almost a year now!

Things do come of this though; Alana is put on O2 with activity and during PT and OT (OT was recommended as well due to her sensory issues—screaming, hands over ears, fight or flight reactions to car washes, some restaurants, music class, etc. and tactile issues to clothing and other), she is now going to PT once a week and OT once a week for an hour. The plan is that once her strength is increased that we will start working with the other OT in regards to her breathing issues to try and get her to utilize her lungs better, maybe in about 3-4 months is the goal.

I’d like to say I was surprised with what the OT & PT tell us, that she has the emotional maturity of a 2-3 year old, that she is hypotonic (low-tone), her O2 needs were greater than we appreciated, and that she needs long term, 12 months or more, of PT services. I would like to say that I didn’t see any of those things but I did. I just couldn’t seem to make them better for her—again.

There are still new things going on with her every month. It’s all day by day and minute by minute. She is such a strong and smart little girl, totally like her sisters in those regards. Rock stars the whole lot of em! We are finally to the end of February and we have Shaylins birthday in March to look forward to and boy, are we looking forward to some normal fun times! We all need a break and if all goes well Shaylins party will just be the ticket for that.

Our Christmas angel...

So yep, she had pneumonia again for sure. Her CRP was elevated, she had an infiltrate in her right lung and she was miserable to boot. Needless to say we did not get to do the EGE testing that time; instead we went on home with ‘scrips for steroids, antibiotics, and orders to check back in with Dr. McArthur the next day or sooner if she got worse overnight. We did end up taking her in the next day to see the doctor and as expected there was the “do we admit her or not” issue to be dealt with.

I know I said that I’d just say go ahead and let’s admit but it just isn’t that easy. There is a fine line that I feel I can walk with Alana in regards to when to admit. At that point I felt that if she could just get some fluids in that she’d feel better, ergo, be able to stay home longer. For the time being the doc agreed and what we settled on was doing an IV in the office. It wasn’t going to be a magic fix by any means but it might allow her the strength that she needs to make it through this. While they are getting things ready Dr. Tapple, whom she’s seen many times when Dr. McArthur isn’t around and admitted Alana for her October stint, sees that we are there again. He inquires as to why, is told, asks if she’s going to be admitted again and shakes his head. I think that the Alana frustration is rubbing off on him as well…

Once the line is placed she promptly falls sound asleep and we just wait for the bag to run through her. It’s amazing how much it can hurt to watch her have a line placed even though you know that she desperately needs it there. I’ve seen her have so many placed I couldn’t tell you a number, I can tell you it still hurts me; not as much as it hurts her, but in a very different way. Over time the line seems to be working and she’s sleeping a bit better and has some color to her cheeks. This is all great news at this point as it means that there is hope that we can go home!! It’s right around Christmas time and she really wants to be the angel in the play at school and I really want her to be that angel.

It does end up working out and she is allowed to go home on tight orders. If she gets worse, doesn’t eat or drink in ‘x’ amount of time, or has an even harder time breathing then we have to return, not only return but return with the knowledge that she will be admitted straight away. I can handle that and I do think that she is OK enough to be at home for the moment.

The play rolls around and she’s WONDERFUL! Thank goodness for such an amazing teacher (Mrs. C) who just takes Alana in stride; she knows when to push her, how much to push her, and when to just offer her a hug without any pushing involved! I am so very blessed with some of the people that are in Alana’s life. She does her lines wonderfully and is in great spirits for the duration of the play. Lucky for us it’s not very long and she’s able to make it through without coughing to bad.
We go back the next day for another check-in and there’s been no real change in Alana. We are given the go ahead to head down to Cooper Landing to spend Christmas with everyone again, conditional; she gets no worse, the hospital in Soldotna is within a short driving distance, and nothing new pops up. This is all doable in my book so off we go to grandma’s house.

Christmas was as well as could be expected. She did have problems with eating and drinking like I’d anticipated but not to the point of dehydration. She did lose more weight, a total of 12% of her body when it was all said and done, but she enjoyed Christmas at home, with her family…not in the hospital like the previous year. It took almost 3 and a half weeks for the pneumonia to finally clear up and things never went back to the ‘old’ way again. Her baseline had officially changed, not for the better.

There are things that I don’t remember to mention in here until I am at a point like I am now. These are the little things that no one can put their finger on but are like pink elephants starting to fill up a room. Alana has had new things going on that I’ve been, for lack of a better word, ignoring. I know that sounds ignorant, foolhardy, neglectful, you name it I’ve thought it. I wasn’t ignoring them because I thought that they were not worthy to be followed, I was ignoring them because I was worried that they needed to be followed. Of course this didn’t last long at all. As Goldfinger so put it, “the first time is happenstance, the second time is coincidence, and the third time is enemy action”. None of this was really going un-noticed by me; I just didn’t know what to make of it was the problem. Here’s a partial list of what I was noticing:

Extreme redness on her face
Hot ears
Hot and red hands and soles of her feet
Raw, painful patches on her tongue
Increase work in breathing
Decrease in her SATs even with the increase in work
A lot of rashes
Sleeping 2-3 hours a day
Increase in her heart rate as well as dips in her heart rate that last longer than they should

I didn’t know what to make of those things or even what to do about them so how the heck was I going to take care of them!? I did take heart that I was not the only one noticing them, Dr. McArthur noticed them as well and agreed that this indeed seem like a new baseline even though it was lower than her crappy baseline to begin with!

Things pretty much continue in that same manner for the next few months. Alana sleeps even more than usual, she is coughing more, she’s running fevers tighter together, not gaining back the weight that she lost in October and December, having frequent rashes and tongue issues, etc., etc. Amongst all those concerns I notice that she’s just really struggling to do daily activities that she used to be able to do, swimming for instance. Granted she still had some issues with them but she still was able to pull them off. Now she can’t even do that and it frightens me to see her literally and figuratively, sink. We are now in February of 2009 and there are changes on the horizon that shake up a lot of things.

The new way of things...

By now I feel like I should be used to this; the unknown of all of it and what it will bring this round. I am not though, nothing seems to make it easier or better or even okay. The same labs are run, the same doctors are contacted, and the same things happen. She holds onto the fever for 11 days and as soon as the fever starts getting better the cough picks up and holds on tight.

There are a few new things that have been creeping up on Alana lately though and here’s something that I feel holds true about her when it comes to new “things”: 1st time a fluke, 2nd time happenstance, 3rd time our enemy. She is now doing something that fits into that last category…she’s having periods of bradycardia (abnormally slow heart rate). Her sleeping heart rate is around 80-120 bpm and now she’s alarming because she’s getting down to 48-50 bpm and not bouncing back up unless she’s jostled. It’s enough of an issue that when it happened in the past the nurses came in and just hooked her up to the heart monitor on their own accord and watched her. When they do it again this time at 2 a.m. because she’s been alarming so much I realize that it’s time to ask the cardiologist what he thinks about it.

When the next morning rolls around and Dr. McArthur is making her rounds she mentions the heart issue and says that she is going to ask Dr. B (cardiologist) about it today and she will call and let us know what he says. Something isn’t right in the state of Denmark and it just cannot be ignored. Calls get made and guess what! Not a big deal at this time. As long as she DOES bounce back then it’s nothing to be worried about. This doesn’t sit well with me on so many levels but again, I am not a doctor right.

As Alana starts to heal from the inflammations attack on her but we are still having problems with eating and drinking. Dr. McArthur at this point is thinking that she might have to start TPN (nutrition through an IV which can cause its own mess of problems) in order to stop her from losing any more weight and not getting any nutrients and vitamins. She’s got 1 more day to stop losing weight before it has to be done. Wouldn’t you know it the next day rolls around and she’s not lost any more weight!! She is holding steady and there is hope that she is going to pull through it without needing any more support than shes already been given! Whew!

I’d like to say that we left the hospital and she was much, much better. If you’ve been reading then you may have picked up on the fact that this year has been like no other with Alana, she’s sicker more often, she’s having issues with gaining and holding onto weight, she’s getting dehydrated within a day of major illnesses, and she’s just miserable more often than not. When we leave she is better, just not better than she was a year ago. She is still so tired and fighting us on eating and drinking. She will eat 1 small meal and not want anything else for the rest of the day. She’s now starting to flux between diarrhea and constipation and that is bringing on stomach pains. There seems to be no end in sight as to what is going to happen with her the next day or even the next hour. Her O2 needs are creeping up and she is struggling with things that she could do almost with ease before. Things like swimming; she used to love to swim and was very good at it for her age. She could do stroke, stroke, breathe and she could dive off the edge of the pool and swim up to the surface by herself no problem. Now she can’t do either of those things even with help. I cannot figure out what is going on and why she’s having such a hard time with everything, is it her lungs? Is it inflammation we cannot see or find? Is she having another issue that we are not aware of? All these things are not things that I want to add to her unknown "in basket"!

Things go by really fast because it’s the holiday season. After Thanksgiving I start to gear up for Christmas and Alana is very excited about something, she’s the Christmas angel in the school play-again! Last year she was slated for the role but where was she last Christmas, oh that’s right…she was in the hospital again. :’( This year will be different though because according to the doctors this too will pass and she will be okay by the time the play comes around. I won’t mention that I’ve taken her into Dr. McArthur almost every week ‘cause her cough is so bad that she cannot make a single sentence without pausing for air and having a coughing fit. I won’t mention that Alana herself has asked her doctor how she’s suppose to talk for her part in the play without coughing. Nothing is making her cough better besides increasing her O2 and that’s a hindrance in itself.

A week or so before the play things start to change for Alana again. We have a big appointment coming up with Dr. Demain to redo her EGE testing and we are all looking forward/terrified of it! Last time we went from 3 foods up to 9 so it’s anyone’s guess how this is going to go. Her appointment is on a Monday morning but by Saturday night it’s not looking good-Alana has a fever of 102.8 and it’s climbing. By Sunday we are hanging steady at 103.2 and pushing Tylenol and Motrin to keep it in check before making her an appointment to go see Dr. McArthur on Monday. By Monday morning though things start to improve and she’s down to 100.4 and looking a little better. Not much mind you but enough that I take her to see Dr. Demain first (it’s a 6 month wait for these appointments and yes, been there done that with her fevers) and figure I will take her into the ped. after her visit with Dr. Demain. Well that goes over like a charm!

She’s lost more weight and after he listens to her lungs during the first part of the exam it all goes south. She has pneumonia. Go get a chest x-ray right away and walk the films back up with you to the office. Stop and get labs on your way as well so we can check her CRP, SED rate, WBC, and start cultures. What’s the motto? Don’t cry, just breathe.