Thursday, September 13, 2012

Just Keep Swimming

It occurred to me this morning as I was cursing every car that got in my way on the drive to work, that I could probably use a day or two to decompress from being in hospital hell for so long.  Unfortunately, after missing two weeks of work, taking a day or two off for some "me" time isn't an option.  I find myself very close to the proverbial edge just hoping to not fall off.  It didn't help that the minute we walked in the door yesterday evening, I was notified by my nursing agency that I didn't have nursing for today.  I pretty much lost it with the nurse manager and told him, among other things, that if they didn't make sure that we had a nurse today, I was finding myself another agency.  I don't think I have ever in my life yelled at someone on the phone like I did yesterday.  Like I said .... the edge.  Wisely, they rearranged things to make sure one of Jack's nurses was at our house today.  The same nurse manager came to the house today to do a recertification - something they have to do anytime one of their patients is in the hospital for more than 24 hours.  Needless to say, I made sure I was gone before he showed up.  Our nurse today - who, herself has a child with complex medical needs, came to my defense and explained to him that spending just one week in a hospital with your child will make you crazy and that you have to multiply that times two and a half in my case.

As for how Jack is doing - from what I remember of his first night home from the hospital, he did fabulously.  I was dead asleep in my bed for most the night, but set my alarm for midnight and 3am to check on him.  He woke up happy and with a smile on his face.  No doubt, he was just happy he didn't have someone turning him, changing him and doing oral care every two hours through the night. That, and the fact, that he's not feeling any pain at the moment.

It has always been one of my "claims to fame" when it comes to Jack that he has never been on a lot of medications.  When medical people see Jack, they automatically assume that he is on a plethora of medicines, when in fact he is was on only one med - Pulmicort.  We left the hospital pharmacy yesterday with bags full of new meds for Jack, which totally bums me out.  According to the nephrologist, Jack has chronically low potassium (we know this based on his blood work from all his hospital admissions dating back to March) and that the low potassium affects the production of citrate and it is the citrate that helps keep calcium levels down.  So, they now have Jack on potassium citrate every day.  Jack is also on prophylatic antibiotics to keep the UTIs at bay.   To check the affect of the potassium citrate on Jack's calcium levels and to monitor for UTIs, the nephrologist wrote a standing order for blood draws and UAs every two weeks.  Seriously?  Keep in mind that Jack is an impossible stick, so there is no way we can take him to the neighborhood lab for the blood work - we will have to take him down to PCH's outpatient lab every two weeks for all his lab work.  This kid is becoming a whole lot more work these days!  Good thing we love him to the moon and back.

There is so much to do in the next two weeks to get ready for our St. Louis trip.  Under normal circumstances, it's an exhausting adventure, but given the last few weeks, my body is about down for the count.  It will be a minor miracle if I'm still standing at the end of this trip.  But, I'll do what I have to do and ...

just keep swimming.


Anonymous said...

Soooooo glad that he is home and happy. Extra meds are annoying, but a very good thing if they keep Jack pain free and healthy:)

Just keep swimming...I like that:)

Much love to you all,

The Hogan family said...

Ann, how long have they had Jack on the potassium? I am sure this has been considered, but Keyan also suffers from low potassium and when it is critically low, her muscles contract, her heart does wierd things, her breathing can be affected, and she is in a lot of the point that she is crying. Just wondering if Jack's low potassium could also be contributing to the overall problem. I would also ask how long they want to continue to do labs and if it is very long, think about a port. Less pokes, and a nurse can draw the labs at your house. Anyhow, I am sure these are all things you have thought of, but just thought that I would throw them out to you. Have a great day being out of the hospital. Hugs to all of you!!

Sarah said...

Ann, I know how you desperately need a break. I so wish there was a way to relieve that pressure. Hopefully after you get back from St Louis the rest of the year will be smooth sailing. I know it isn't any consolation right now when you are ready to jump out of your skin. I'm happy Jack is back to his old self. Hugs!!

Susan said...

(((((HUGS))))) Isn't it great to have friends like Stephanie?! I hope that explains some things. Hang in there, you're an expert swimmer, doing a great job keeping your head above water considering the circumstances!