Haley’s Giggle

Haley is back in the pou and having an uneventful day (aside from vomiting and her excruciating diaper rash that is a result of having no immune system– it can’t heal and it keeps getting worse). Finally a chance to breathe, and a chance to write with more than a hour of sleep under my eyelids. Whereas before I dreaded the thought of going to the Pou, because that meant more wires and not being with favorite nurse, last night’s move back from the ICU was a dream.

In the end, they still can’t figure it out. Even if they say that it was the over-nebulizing, it’s not clear what started it all in the first place. Her primary doctor is tortured by it, but the ICU doctor was relieved that it didn’t persist and discharged her. She actually now belongs back in her regular room, but due to over booking, they literally gave her room to someone else. So, she’s still hooked up to more wires than necessary, but at least this is a 1:1 nurse to patient ratio. Our stuff is packed back onto a stretcher, covered in the canary yellow surgical gowns, while we wait for a new room.

From the time it began, which was Wednesday way too early morning at 1 a.m. until the moment she came back here, which was Thursday night at 8 p.m., the importance of being another pair of eyes on your own child, taking note of what goes in her and when, and what if any reactions take place, cannot be overlooked. And it’s OK to question the doctors, or tell them what you noticed. It’s more than OK. It’s your responsibility. I look up to the tubes with clear liquid hanging down into large machines that dispense the medicine into her catheter, and I try to guess the medicines in each bag. So far, I can tell a few of them by shape of container.

The monitor is no longer addicting, and I don’t watch it like a stock market ticker tape anymore. Her oxygen saturation is at 100, which could not be better. Her respiration rate today has been in the 30s, and right now I’m looking and it just read a new low of 22. Of course this myserious lung issue can come back at any moment, because it’s not clear what it is. But until then, she’s doing much better. She even smiled a few times today. And ALMOST giggled. ALMOST. And the doctor said we could see some white blood cell counts as early as Monday. So even though Haley is breathing easy, I’m still holding my breath until i know the transplant engrafted.

Guests today were: Savta; Aunti Jojo (my sister), who came in from Dallas; Gramps; and Heather and Bini, who surprised us with their visit and awesome homemade spicy pecans. 

Funny moment comes from a conversation between Aunti Jojo, who is a pediatric cardiologist and the nurse, after the nurse gave Haley a bath.

Auntie Jojo: I’ll help put on the electrodes (sensors that feed Haley’s bio stats to the monitor).

Nurse: Hey! You’re doing a great job!

Auntie Jojo: I’m a pediatric cardiologist.

Nurse: Wow, you’re good. You want a job here?

This blog will be a short one, even though the events of the day demand it be lengthy. I have been up now essentially a day and a half (minus three hours, not contiguous). Essentially, Haley was taken to the icu in the middle of the night (this hospital doesn’t have an icu), but this icu is not equipped to handle a post-transplant patient, so there was not isolation. Tonight she is back in the Pou, which i can’t believe i’m saying I’m thrilled at. The ICU didn’t even have a crib.

Special guest though was Carrie, one of my sister’s best friends, who works at this hospital on a another floor and tried to at least get us some answers when it we were put in a strange environment not hearing from our own doctors the whole morning.

The good news is that her breathing has calmed down, and there’s no other sign of infection or other issues at this point. I’m sorry the daily haley fix is so short. More, much more, tomorrow.

It’s the first day of Spring, or so we’ve been told. Today was quite a roller coaster day, and I haven’t had any highs to report, so I’ll start with all of them.

 The Good News: She opened her mouth today for the first time in 3 days, and even put in an object or two (the doc’s gloved finger, the oxygen hose, the stethescope, etc.) because she’s teething so bad. This is good news. Because it means that all of the mucous and saliva she’s been chipmunking away will be easier to remove, etiehr through her own drool or a less invasive suctioning. She also said “bababa” alot. So her mouth must be feeling a little better. She was a bit animated and quazi smiled, and almost giggled a time or too.  And her fever broke by the end of the day.

The Bad News: She had a high fever today. This of course is usually a sign of infection, and since she has no immune system, it can be quite dangerous. In addition to tylenol, they ordered the usual– blood work, chest xray, etc. I felt her shiver, and felt her grow increasingly limp. She’s still breathing too fast. They say that it’s all of the mucous that’s blocking her airways, making it very hard to breathe, tiring her out. The doctors are very concerned about her getting too weak, so they are keeping a very close eye on her, doing the nebulizer every two hours, suction every hour (both to clear the airways) and keeping her on oxygen (to make sure her oxygen saturation level is at its maximum). They took an EKG to rule out any heart issues. The doctor said today, “I just want to make sure it’s not heart failure.” Then he walked out. First I heard of any such complication. She also vomited a few times, per her normal routine now.

The doctors were in and out all day. The head of the department. The attending. Two fellows.  few residents. Haley’s favoritet is this certain attending who said today, “if you don’t see Haley one morning, it’s because I ate her up.” He is very close to her, gives her lots and lots of kisses. I don’t blame him– even through her cute little pout, she’s extremely delicious.

Guests today were: Savta, Saba, and Aunt Elana. Savta made a poster of Anna and Haley. That now accompanies the calendar.