Hospital Holidays

Happy Holidays to everyone. We are happy to report that Marleigh is doing well after another stay at the hospital. This time we were at Cedars-Sinai (which, in case you didn't know, is where Julia Roberts had her twins *Fun Fact).

Marleigh has had really low sodium because of the new blood pressuer medicne she was on (Lasiks). We thought that she was doing well, but we knew that there was a chance this diuretic would pull her electrolytes from her system. So she had a blood test 1 week after she started the drug. The result was that her sodium and chloride was very low. The Drs all thought it would be OK if it did not continue to drop. Unfortunately it did drop, much more and more quickly than we anticipated. Suddenly we were packing and heading into the hospital. When you loose sodium it can be very bad for your system and even cause siezures. Because she lost it slowly over 2 weeks her body had become accustomed to less salt so they couldn't add it back quickly, it had to be slowly raised over many days. We found ourselves spending 3 days in the hospital, mostly just hanging out in the room. Keith and Dylan stopped by during the day and there was a cot in the room for me to sleep in at night.

Since we missed Christmas, we had it a day later - Dylan didn't know the difference, thankfully it is easy to keep the fantasy alive with a three year old. He doesn't even question when the gifts from Santa are wrapped in the same paper as the other presents. And he didn' question us when we returned one of Santa's gifts to Toys R Us and exchanged it for one that worked. We had to take at least one photo of Marleigh in the hospital with that cute Santa hat. Especially since she didn't get a photo with Santa.

She has a terrible cold, they x-rayed her chest while we were at the hospital and thankfully she is not developing pnemonia. She does have an ear infection and it looks like she may have started teething. Needless to say her mood has not been the sunniest - but hopefully she'll be feeling better in a few days.

We are now on a new BP medicine (Amlodipine) and she is doing very well now that we are home. We have another blood test on Monday to make sure she is in good shape and only a couple more weeks of the ACTH. So far so good. We can only hope that the seizures do not return.


The firefighterswere bringing in gifts to all the kids in the hospital. They gave her a hippo stacker. And I gave them a hug!


Marleigh and Daddy at Dylan's Holiday Party. I'll post something from this on the other blog.

Holiday Update

Hi everyone! Marleigh has been a regular at our pediatrician. They are fabulous and soo sweet to her. I have a lot of good news to report and a few minor setbacks.

First the happy update:
Marleigh has had no seizures since October 3rd when she started the ACTH treatment. Yay!! She has been getting an injection every day until this week - she now only gets poked every other day. We finish up the last shot on January 16th.

Our neruologist had us discontinue the B6 - she really hated it, it is nasty (I felt obligated to try it since it was just a vitamin.) It is supposed to be swallowed whole but Mar had to take it crushed and dissolved in milk. Yuck. It was a real pain forcing her to suffer through it every night so we are happy that we can skip it! And while I know B6 is just plain good for brain power, I don't think it had any effect on the seizures.

Marleigh has had the WORST diaper rash I, or our Dr has ever seen. It would not clear up and continued to get worse until she had 3rd degree acid burns (yes, her poo was literally burning her bottom) over 50% of the area covered by the diaper was open bleeding sores. Yes, OUCH! We have been battling it for over 6 weeks. I have felt a little like MacGuyver with all the different ways we have tried to keep the poo off her skin and the medicine on it without putting tape over open wounds. It would be comical if she wasn't feeling so much pain from it. But now thankfully it is healing - and I'm sure it is no coincidence that she is smiling a lot more!

Now for the not so happy news:
The ACTH in a small number of patients can cause blood pressure high enough to require additional medication to treat it. Our Nerologist said he has never had a patient on BP meds, so of course Marleigh has to be the first. Unfortunately, the first medicine (Enalapril) did virtually nothing to lower it, despite daily (yes daily) visits to our pediatrician and regular increases it remains high.

Last week we had to go see a cardiologist and have an ECHO and EKG which confirmed that her heart wall is thickening because it is working so hard to pump her blood. Not good. So now we have started another BP medicine called Lasixs (Furosemide) a diuretic. It is helping to bring her BP down but we had to have blood drawn yesterday to see if it was lowering her electrolytes too much - and of course it is. So now we are in a bit of a conundrum. On Monday she'll have her BP checked again and if it is staying in a reasonable range we'll draw blood again to see if she is still in trouble with the electrolytes - then we'll have to decide what to do. But if her BP is high, we'll just take her off her current medications and try something else.

Thankfully, the woman at the lab did an amazing job drawing Marleigh's blood. She got it on the first try and somehow even got her to stop crying. I used a numbing cream but it seems like it still hurt to get poked. Or maybe she just didn't like me holding her so tight - you have to keep her still so she doesn't pull out the needle.

Anyway, we are happy for all the good things that are happening and hopeful that we can come up with a good solution for the other bits.

I'll check back in soon, when I have new info. We are really looking forward to the end of the ACTH!

Hugs,
Erin