The New Normal

Well Rayne and I survived another trip to Birmingham on Tuesday. It wasn't too bad, I think. I'm still adjusting to some of the news and we are still waiting for lab results to come back.

In general Rayne is doing okay. She is almost back up to 23lbs (she had lost a little weight during this last illness), and she is just shy of 33inches. Both stats are on the growth chart!! Wahoo!!! Rayne was also healthy for her appointment which was surprising for the Pulmonologist. He asked what I did and I told him Rayne just finished an antibiotic a few days before. The doctor laughed, smiled and said "Well that makes sense". I teased back that she'll probably be sick in less than a week, that's just how it works.

Which brings us to the main point of our story. Given Rayne's first round of lab work, her reaction to the Pneumonia vaccine, and the fact that this last cold didn't go away until she had a steroid and an antibiotic she definitely has an immune disorder. How bad it is we have to see how the repeat lab work comes back.

Now when most people hear immune system issues they think autoimmune disorders. Autoimmune disorders attack cells that are supposed to be in the body leaving nothing to attack the bad cells that invade the body. Making the body weaker and unable to handle illness well. Rayne has the opposite problem an Under reactive immune system.

Under reactive immune systems don't activate when a virus or infection invade the body. The virus or infection can sit and incubate for days or weeks before the immune system kicks in. But of course by then it's too late to kill the virus without the help of antibiotics and in Rayne's case steroids too. The other down side to the under reactive immune system is that it may not react to a vaccination properly. So if if Rayne is to get a vaccine it may not protect her from getting the illness.

What does this mean for our little family you may ask? Well it means we have to be a bit germ-a phobic.... urg. Fred and I have always been great believers that kids need dirt. That kids need to play outside, that it's okay if there is a little dirt under their nails every so often, that the house doesn't have to wiped top to bottom every week with bleach, bussed restaurant tables are clean enough, and if a kid at church as a runny nose it's okay to play with them. Well we have to change our way of thinking. Yes Rayne can still play outside but hands have to be washed/ and or sanitized a lot more. We have to work on keeping the house and pets cleaner. Wipeing down the places we sit and eat when we go out. The biggest things is we have to minimize Rayne's exposure to illness. Fred and I have to do the best to stay healthy, and not pass on anything we may pick up. We have to be careful about the kids play with Rayne and if they have runny noses or lots of coughing we have to try and keep her away. Pretty much we just have to act like parents of a newborn, but with an active toddler. Yup no challenge there...

What this means for our friends and family. Be prepared to have us come behind you to clean, to ask you to wash your hands, to see if you have any hand sanitizer, or not stay very long if you or your child is sick. Oh and we may smell "weird" because of the essential oils we use to try to keep everything at bay. We don't do any of this to be offensive but we have to do everything we can. As it is Rayne will probably be starting a low dose of daily antibiotics to help boost her immune system. But the more she is on antibiotics the more resistant she will become. Amoxicillin  is already non effective, and she has a long life to live yet.

In the next week or so the lab results should be back and we will know if anything else needs to be done. As for now this is our new normal.

pH Probe- So old.

This is an old copy for some new friends to see. 

Looking back it is almost surreal. I hardly know what happened when; if it wasn’t for the record keeping I’d probably be clueless. But I’m getting ahead of myself.

walking around at night

Monday we drove down to Birmingham, it was a nice sunny day. After admission and check in we were ready for the pH probe. Anyone who knows Rayne, should know she HATES medical professionals. I swear she can smell it in people. And then they whip out a stethoscope oh by golly you have a screaming baby. By the time we got up to the GI Lab Rayne was already pretty upset. First she had to have arm braces put on that kept her from bending her elbows to get to her face. Next she was strapped down to the table. As much as she kicks and screams I would rather have her strapped down than try to hold her. The probe was then fed through her nose and down her esophagus stopping right above the sphincter. A quick x-ray to verify position, and an adjustment of the probe it was securely taped down. The test had begun. The short lived upside was Rayne could now it. It had been nearly 4 hours.
It was a short lived upside because of the arm braces. Rayne could not hold her bottle; it was too short for her to get at. And of course being the stubborn child she is me feeding her was out of the question. So during the 45 minutes that she was allowed to eat Rayne managed a mere 1.5oz of milk. Yes I said 45 minutes allowed to eat. That precious 45 minutes would only come every four hours until the test was done. And those would be the only time she could eat or drink.  As if having a tube down your nose isn’t tough enough, arm braces and eating restrictions are now in the mix. Poor baby.
Oh and then there was the record keeping. I had to track when every eating time started and ended. Also what time she was sitting/standing up while she was awake, laying down while awake (all clothing and diaper changes), and the same ideas for sleeping, what time she would burp, cough, vomit or have pain. If the paperwork was not with you it can be very hard to remember when things happened.
In between eating times we’d go for walks in the main lobby. There was people playing Christmas music most of the day, wonderful decorations. And of course the stairs, the nice long stair case that was about three stories high. That was a lot of fun to watch Rayne go up and down them. Remember she couldn’t bend her arms. So it was something to see.  She would get tired after about 30-45 minutes of play. So we head up to our room.
Even though we were on the fourth floor our windows looked at the tops of other buildings L But with a TV/DVD combo Veggie Tales were easy to fill in the time gaps. It also gave time for mommy cuddles too. During meal times we could take of one arm brace to let her eat but we had to watch like hawks to make sure that the probe didn’t get pulled at.

I swear the pack weighed as much as she did.

The overnight… well that just stunk. Rayne is used to getting bottles to go to sleep and when she stirs in pain we would give her a bottle to help soothe her. If you had reflux in the middle of the night wouldn’t you want something to drink?? But I couldn’t give her anything. So we walked….walked… and we sang as we walked… and walked (anyone get the random reference?).  In total I spent around 3 and 3.5 hours walking the halls of the hospital keeping Rayne calm and sleeping as much as possible. Finally around 5:30 is when I laid down to sleep, with Rayne propped up in my arms. I woke up around 8 and Rayne woke up about 8:30 am, Rayne was done!!!! She was hungry, tired, sore, and probably angry. She screamed and cried until it was time to eat at 9:30. Once she got her milk she was happier. Then eggs, cherrios, and strawberries were gobbled up. In the middle of breakfast we got a call from the lab. They had someone coming in for a test at 11am. It would take over two hours. So they had decided that they were going to come early to take the probe out. YAY!!!!!!!!!!!!!!!!!!!!!
Probe was out and we were discharged by 11am.
Dr. King (the Gastroenterologist) did stop by a couple of times. And unless for some odd reason Rayne’s test comes back with a perfectly neutral pH level of 7 he will be sending her in for surgery since we don’t have another other medical options. But this test lets us know what to expect of the surgery. If Rayne’s levels are BELOW 4 (highly acidic) a lot of the time then surgery will be a practical cure. If she is in the 4-5 Surgery is still call for but we can only expect it to be say 80% effective. So she may need mild meds to help out. But either way it would be a great improvement from the current situation.
The other reason for the test is for the surgeon. Dr. King believes that surgery (especially this one) is more of an art than a procedure. So he only likes to use the best available, who requires this test. In the long run I’d rather suffer for a day and get the best then just take any ‘just let me cut’ doctor.
Having mom there was awesome. A complete life saver, I didn’t have a clue what to expect this time around so she helped me figure out where everything was and who we needed to ask for certain things.  So during surgery if I’m there by myself well I’ll know what to do. She was there to let me know I could do this oh and she put up with me snapping at her when I was just past exhausted.
During our stay as hard as it was I felt so blessed the entire time. At check in the girl in front of me was 17 and battling Cystic Fibrosis. In our wing there was a little girl 7 years old that was brought down that day in near critical condition with Juvenile Diabetes. She also had a 5 week old little brother that had the flu. That poor mom was having a very hard day. Then of course the next wing over was for restricted access cancer patients. Sure life can be hard with Rayne but boy are we blessed. She is such a wonderful little girl with a great spirit and attitude. Heavenly Father has entrusted me with His daughter and I have to treat her like the princess that she is.

Update: Rayne passed and did not need surgery a scope showed another issue entirely.