Updates

To say it has been a rough 2012 so far would be an understatement.  I am already looking forward to 2013 and it is not even August yet.  Luckily all of our issues have been manageable, but it has just been one thing after another this year.

We took Casey in for her 6 month pulmonary check up last week, and he asked us how things have been since he saw her last in early January.  By the time I finished rattling off the different issues I could see his head actually spinning.  He didn't even know what to say. 

We started off the new year by trying a new medication for Casey's stiff legs.  That medicine caused all kinds of issues (GI bleeding, urinary retention, high heart rate, etc.).  We finally got her off of the medicine and most of the side effects went away.  Not all though, after that we spent some time in and out of appointments, tests, etc to try to find out why Casey wasn't having normal wet diapers.  The tests came back to say that she is okay, but that she is pretty much always walking a fine line between hydrated and dehydrated.  So we do everything we can to get her as much fluids as possible, but her GI issues only allow so much.  It's a tough balancing act. 

We went about a week then Casey got an eye infection, that led to an ear infection, that ended up being a double ear infection that came back as MRSA (staph).  NO FUN!!!  Casey had to take some pretty serious antibiotics to kill off the infection and this did a number on her tummy.  She was crying a lot as well.  We thought the crying was from the pain in the ear and tummy issues and that after the antibiotics that she would be fine.  The medication finished and she still kept crying.  The ENT checked her out and said the ear was better and that he wasn't sure why she was crying.  We went round and round and finally after a couple of weeks (very long weeks) we figured it out.  Casey's neuropathy pain had gotten out of control.  Her neuro increased her neuropathy medication and it did the trick.

We went a couple of days with a happy girl, and we had to start working on switching her formula.  The one she has been on for years changed from a can to a carton.  We were told it was the same formula, just new package.  Wrong!  They changed the way the calcium and vitamin D were being added (and it is more of both) and this led to constipation issues.  We already had Casey on medication for constipation and really didn't want to have to increase or add more medications if we could avoid it.  Instead we wanted to find a formula that she could switch to.  We compared labels and found an elemental formula that seemed like a close match.  Wrong again.  Elemental formulas are made with certain digestion enzymes that are supposed to be easier to digest for kids like Casey that have digestion issues.  Well, Casey is allergic to one of these enzymes.  Instead of helping to digest it shuts down Casey's digestive system completely for about 24 hours.  Anything we put in she throws back up.  After about 24 hours we had to slowly build her up from pedialite to a mix of pedialite and formula.  All the while she was still retching, crazy high heart rate, low oxygen (she had to be on oxygen for a day) and the retching caused her ulcer to bleed so we had GI bleeding on top of everything else.  Since she was not able to take anything in, she stopped having wet diapers again.  We had to go back to using a catheter to make her pee.  It took us a full week to get her to be able to handle formula again.  Luckily we had some of the cans left that we could use while we got her back on track.

Casey did good for about a day, then a miscommunication led to Casey getting the elemental formula again.  All of the same issues came back.  All Casey had the first time was about 100cc (just over 3 ounces- a can of soda is 8 ounces- it took us over a week to get her to cover from less than have a can of soda's worth of elemental formula).  The second time we caught it pretty quick.  She had been given about 45cc the second time - just over 1 ounce.  However, the second time was actually worse.  Since she had been so sick for the entire week before, she had not had time to fully recover.  She did not have any reserve of fluids to fall back on while her digestive system was shut down.  We spent a lot of time on the phone with her doctor, and were very close to heading to the hospital a few times in the first couple of days.  Luckily Casey was able to take some pedialite after about 12 hours and we were able to get her hydrated enough to bring the heart rate down to a safe level.  We still had to use the catheters for a few days, and her heart rate was safe, but still very high. 

Casey's doctor said she would call in an order for Casey to get some fluids via an IV at home.  This sounded perfect!  We could get Casey hydrated with out having to worry about her tummy issues.  We learned that if you are not an established infusion patient with an infusion company, this is not an option on a weekend.  Of course this would all happen first this Saturday morning. 

We had finished our surplus of the old cans and had no idea what to do for formula once we were able to get Casey back to that point.  As luck would have it, we had a secret weapon (we didn't even know it).  One of Casey's nurses had a baby in April.  She is still breast feeding and offered breast milk for Casey.  Breast milk is much easier to digest and Casey's weak little body could take advantage of the antibodies in the breast milk as well.  We talked with Casey's doctor about it before starting.  Everyone was on board and thought it sounded like the best approach.  For anyone freaking out reading this, milk banks are actually very common and very safe.  This was even better, we knew the source personally and trust her completely. Casey's nurses really do love her and will do anything for her.  I think this nurse went way above and beyond.  It's pretty amazing to see people care so much about our little princess.

Casey did great with the breast milk and bounced back pretty quick.  We worked up from pure breast milk to a combination of breast milk and formula.  Just this weekend Casey was finally able to go full formula.  We decided to go back to her original formula (in the new package that caused her to get constipated) and we doubled her constipation medicine.  We really wanted to avoid adding more medicine, but it wasn't worth putting Casey through weeks of trial and errors with formulas that were hurting her.  So far she is doing okay with the increased medicine. 

We have worked with Casey's doctor to get the infusion order filled.  Since Casey is always borderline dehydrated, having the infusion on hand when we just can't get enough fluids into her tummy will make a huge difference.  Sadly that will mean that to get the fluids we will have to have a nurse come out and start an IV, but it's better than letter her heart race for days on end while we try to get it down slowly through her stomach. 

So far this year we have had to add catheters to help Casey pee and now IV's to help hydrate her.  Both are ordered as needed, but neither are things we were planning to see anytime soon.  You do what you have to do though, and you just figure it out.  The good news is that Casey is doing better this week.  She has been watching movies and playing some.  All of the elemental formula has been removed - and banned- from the house.  Hopefully we can have some time to try to enjoy the rest of the summer.  We hope everyone is well.

The Good & The Bad

Let's start with the good news.  Casey has responded really well to the increase in her neuropathy medication.  We saw a difference immediately.  She has been sleeping better at night, and the nonstop, inconsolable crying has finally stopped.  She was breaking our hearts.

Casey's BFF Makayla moved away last weekend.  Her mom was also one of Casey's nurses.  We miss them already.  Luckily we were able to squeeze in one more play date at the accessible park before they had to leave.  Casey loves Makayla (and Maritza- her mom);  hopefully they will come to visit soon and often.

We are still having a really hard time getting Casey's formula issues resolved.  I won't go into a lot of detail.  We tried a new one last Thursday and with about 3 ounces we had to stop (a few hours).  Casey is still recovering from all the affects of that formula.  We added it to our 'Never Again' list. 

We have a few more things to try.  We are in the process of trying an alternative now.  We will see how it goes over the next day or so.  We are really hopeful that this works.  We are down to the last can of the old stuff.  When it's gone, that's it.  Hopefully we will post good news of a new formula for Casey in the very near future. 

We are kind of laying low over the past week or so.  Casey has been trying to recover from the formula that did not go so well, and Tim and I have been pretty busy with work and projects. 

Casey did get to go to one of her favorite places before she got sick (in addition to playing with Makayla).  Casey LOVES her dentist.  She has lost so many teeth.  She only has one left up front.  She looks so cute.  While at the dentist we found out on of her bottom front PERMANENT teeth is coming in.  She is growing up way too fast. 

That's about it for now.  We hope everyone had a fun and safe fourth, and that everyone is enjoying their summer so far.