A Day in the Life

In the past week since leaving the hospital, we have gotten a lot of questions regarding how Lexi is doing at home, and what her care at home has been like. So we thought we'd try to cover the major meds she is on right now to give people a sense of what her days are like. Somewhat amazingly, none of the shots we give her or medicines we force down her throat keep her from smiling, laughing, dancing, and doing all the things we love about her (at least not for longer than a few moments.)

Amoxicillin - This is the antibiotic she is on to help fight bacteria in her body. RSV grabbed all the headlines while she was in the hospital, but she also had pneumonia and two separate staph infections running around her body during that time. Amoxicillin is a refrigerated liquid which must be given orally to ensure the staph infections or other bacteria growing in her body are knocked out.

Lovenox Injections - Lovenox is an anticoagulant, or 'blood thinner,' which helps prevent the formation of blood clots. Or in Lexi's case since we know she has a blood clot in her leg, it should prevent more clots from forming, or prevent her existing clot from moving around the body or getting larger. Lexi has to get two Lovenox shots every day, one in the morning and one at night. Unfortunately the pre-filled Lovenox syringes given to us by the hospital pharmacy are too high of a dosage, so each day we have to set up a sterile lab at home, put on latex gloves, and carefully fill two smaller syringes with the right amount. The reward for our efforts? A daughter who probably hates us as we pin her down and attack her with needles to the gut twice a day every day.

Ativan - Ativan is potent and fast-acting anti-withdrawal drug #1 in her arsenal. Its sedative and amnesic effects apparently can calm withdrawing patients, or even be used to sedate patients before medical procedures. It's also used to treat chronic anxiety and depression, so it's possible the docs just aren't telling us that's the real reason she's taking it. After all, could you really blame the kid if she had panic attacks or was depressed -- she has spent months in hospitals, and now she has Mom and Dad using her black and blue stomach as a pin cushion and forcing oral meds down her throat 24/7 at home. Ativan is a refrigerated liquid given every 6 hours round the clock, with dosage levels declining between now and early March.

Methodone - For kiddos specifically doped up on opiates for extended periods of time, Methodone is the drug of choice to combat withdrawal symptoms. Methodone's primary uses are to prevent narcotic cravings and/or block the euphoric effects of opiates like heroin and morphine (we hope docs are targeting just the latter unless there was some funny business going on back home while we were in Iceland.) Given Lexi was on morphine during much of her 17 days in the hospital, and given she was on higher than normal doses due to previous usage, she needs Methodone to wean off of it, in order to avoid the dry mouth, limb twitching, and discomfort that Lexi has experienced in its absence. Methodone is a room temperature liquid given every 6 hours round the clock, with dosage levels weaning over time. We have taken over these duties from her primary nurse Crystal on the Peds floor, which is probably for the best since nobody ever laughed when I kept telling Lexi she was getting Crystal's Meth in the hospital.

Synthroid - Since Lexi has hypothyroidism, a condition whereby her thyroid gland does not properly regulate the body's metabolism and energy levels, she has to be on Synthroid. That in and of itself is not newsworthy, as she has been on this drug for quite awhile. One and a half pills need to be crushed, dissolved in 10ml of sterile water, and given orally via syringe each morning. What is newsworthy, though, is that all of the other drugs flowing through her body this month have throw her thyroid levels out of whack. So now Lexi needs blood drawn regularly to identify these levels more frequently, so dosages can be altered accordingly. Not a big deal, other than it seems cruel to pile on another handful of needle sticks, directly because of what other drugs and needle sticks are doing to her body.

Probably the most amazing thing of this whole ordeal is just how well Lexi handles it all. Sure, she screams when needles are coming her direction, but it's just for a few brief moments, and then she's back to loving life again. She might occasionally go three stooges on us with the eye pokes to try to exact a little bit of revenge, but all in all she handles everything amazing well. How she continues to smile and laugh throughout everything she's been through in life is truly inspiring.

Daddy's Sweetheart

Since Lexi didn't get to wear her Valentine's outfit for Valentine's Day, we decided she should wear it today. We are still celebrating her heart, and the fact the hole is starting to close, so we figured it was pretty fitting.

We've transitioned to being back at home pretty well. We have figured out a good schedule for her narcotic medication and double check each other to make certain we are making the right dosage adjustments. She's handling the step downs in dosage really well and hasn't shown any signs of withdrawal since the first night. We're also handling getting up in the middle of the night to keep her on schedule pretty well, too, all things considered.

We also have figured out how to fill syringes with her Lovenox anti-clotting medicine. Every time we fill the syringe, we feel like surgeons, putting on sterile gloves and ensuring a sterile work environment, but we manage to get it done. She's taking the shots twice a day like a champ, hardly even crying most of the time. We're getting better about not making her bleed and minimizing the bruises on her stomach, but her stomach still looks pretty beat up right now, and figures to only get worse in the coming weeks. We're also getting good at ignoring what might happen if that blood clot decided to move to another part of her body. We go to the doctor in a little over 2 weeks, and we just pray the blood clot is gone, so we can stop with these meds and not worry about that anymore. We know one thing for sure -- she is one tough cookie.

Back Home at Last

We got great news this morning when the pediatrician on the Peds floor determined that Lexi could be discharged today! We ended up waiting around until mid-afternoon before finally getting to leave, but it was certainly worth the wait. The drug aimed at treating the blot clot in her leg typically comes packaged in larger doses, so a solution needed to be devised which would allow us to give her smaller doses. Of course, anything out of the ordinary in a hospital environment causes a million people to need to be involved -- primary doctors, hematologists, pharmacists, insurance carriers, etc -- so there was quite a bit of red tape to deal with before finally walking out of the joint. Most importantly, though, Lexi is now home with us after a scary 17 night stay in the hospital. Part of us thinks that was an incredibly long, gut wrenching experience, but part of us feels blessed it was her third shortest stay at St John's!

It was wonderful seeing our daughter in our living room smiling and playing with her favorite toys once again. We still have a long ways to go before she will be off her anti-withdrawal drugs, and before we've successfully treated the blood clot in her leg, but we're grateful the hospital trusts us enough to manage the rest of her recovery from home. Unfortunately, in the amount of time it took us to sort out the dosage issues above, leave the hospital, get her prescriptions filled, and get home, she had already started withdrawal symptoms, most notably twitching of the limbs and smacking her lips repeatedly. The experience put a brief damper on her homecoming, as it showed that even 6 hours between doses is noticeably too long for all the drugs she has taken (right now doses should be 3 hours apart.) However, we know this is a necessary evil which comes with the territory of spending so much time hospital time at a young age, so we will diligently following the weaning process and have confidence she will be just fine. Although we have quite the pharmacy lab in our home right now, and responsibilities to give her various cocktails every three hours round the clock, the key point today is that we are home. And that our baby came out on top after facing yet another formidable medical challenge. We couldn't possibly be more proud of her, or feel luckier to have her in our lives.

Kisses

Lexi has bounced back from her two week nap pretty well. She's already starting to regain some of her core strength and wanted to try walking around the hospital room today. She hasn't forgotten her games either, as this morning first thing, she grabbed her blanket and pulled it over her head to play peek-a-boo. During our wagon rides, she's waving at nurses and clapping, so we're excited that our little girl is starting to come back.

There is one new thing about Lexi that is a little surprising. Before all this, when you asked for a kiss, she might offer up her cheek as a consolation, or give you a hug instead. Now that she's awake, she's giving full-fledged kisses. Although this is fun, it is a little wet, as she does so with an open mouth, and you are afraid that she's going to chomp down on your lips in the process. We're trying to remind ourselves that she's not an alligator and hopefully won't do that, and, instead, are taking all the kisses she wants to give.

On the medical front, they pulled her feeding tube today, since she has had 5 straight meals without any issues. Now we are just waiting to make certain she won't have any more major withdrawal symptoms as we go down on her anti-withdrawal medication. As soon as we are in the clear on that front, and as soon as we finally see the hematologist about the blood clot in her leg, hopefully we will have the green light to head home. We'll be kissing everyone at that point!