April: Hope on the 8th floor
THE HOME STRETCH Authored April 30, 2013
Isla's looking good, and we are planning on "rooming-in" with her this weekend, for a tentative discharge date on Monday morning! Her broviac site has healed, and she will finish her round of antibiotics on Friday. We will continue to work with a speech therapist during "home visits" at the Ronald McDonald House to her her with feedings. Unfortunately, it looks like she will have to stay on the Tolerex formula for awhile longer per Dr. Forbess' orders. We're glad we've already maxed out on our insurance because we hear that nasty stuff costs several hundred dollars each month!
Over the weekend, she will be disconnected from all her leads and electrodes, and we will be entirely responsible for her care, including completing assessments, weighing her, recording her oxygen saturations, and administering medications. These are all things we will need to do at home for the Safe at Home program at least until her Glenn surgery. We're a little nervous but looking forward to it. Some day soon we will be able to put her in her stroller and take her OUTDOORS!!
SLEEPY SATURDAY Authored April 28, 2013
Still catching up on sleep from the craziness of the past couple of days, Isla is napping the day away! No changes to her care plan have been made. We're taking it slow and are in no rush to get out of the hospital.
She's continuing to get feeds 2x/day by bottle and has been doing really well. We're hoping they will do another swallow study to determine if she is still aspirating into her lungs. Because the last swallow study (done about 6 weeks ago) showed that she was, she's been on formula thickened with rice cereal. Ironically, the thickened formula makes it tougher to pull through the nipple on the bottle, so she has to work harder to get the food out. Watching her with the bottle reminds me of trying to slurp a Wendy's frosty through a straw...damn near impossible!
The swallow study exposes her to about 4 minutes of constant X-ray, so they like to space them out as much as possible. If they do one too early and see she is aspirating a little bit into her lungs, she'll stay on the thickened formula protocol for at least another 6 weeks. So the goal with that is to wait as long as possible before doing another study. In the meantime, she's getting stronger at sucking!
MINIMAL STIMULATION Authored April 27, 2013
After a stable night and morning, Isla was moved back to the 8th floor, into our old room. We've learned a lot in the past 24 hours about how to keep her calm and have developed some hypotheses about how best to care for her. It seems that whenever something goes amiss, doctors' natural curiosity gets the best of them and they want to find the answer--which translates into a battery of tests, check-ins, and other things that disturb Isla. Anyone who has spent time in a hospital knows that every couple of hours you get disturbed. With Isla, it's like a constant procession of therapists, doctors, nurses, medical students, physician assistants, surgeons, and others come in to see her. Part of what perpetuates the cycle is the fact that CMC is a learning hospital, and every medical person works on a team. Each level of care, from the nurse taking care of her to the head surgeon, involves a team of 3-8 people that change shifts every 12 hours. If each person assess her even once during their shift, that translates into literally dozens of prods each day! It seems like she gets into fight-or-flight mode where she doesn’t want to sleep, because she knows she is going to wake up to a heel stick or cathedar probe or something equally uncomfortable. Last night we saw her wide-eyed and agitated for hours, to the point where she didn’t even bat an eyelash when she got a needle poke for the umpteenth time. The most obtrusive things aren’t the only problem; even the simplest assessment of unswadding her to listen to her heartbeat or take her underarm temperature seems to piss her off. So we've spoken to the nurses and have devised a plan of care with minimal interruption. There’s even a term for it – “cluster care”, that we wish we had learned about months ago! They posted this lovely sign on the door, and hopefully people will heed it. The lion and lioness in the den are getting extremely protective!
BACK IN THE CICU :-( Authored April 26, 2013
After several more pokes and prods, Isla worked herself into a sleepless rage this afternoon. We finally got her calmed down, but she was extremely alert--just sitting in the chair with us, sucking on her binky and staring at the ceiling. Every time a nurse or doctor came in the room, her heart rate and breathing went up and she would start to squirm. Thankfully the nurse noticed and put her on a "no touch" wait for everyone except us, which helped a lot. After several hours awake, irritable, and de-satting, they put her back on oxygen through the nasal cannula and ultimately decided she should spend the night back in the CICU for closer observation. So, we packed up our room and moved back downstairs for what we hope will be a short visit. Good news is, she had calmed down considerably once her fever broke around 7pm, and when she finally got transferred to the CICU around 9:30pm, she was doing a lot better.
The doctors suspect the removal of her broviac line a few weeks ago might still be causing her some residual problems. They are doing all kinds of tests to determine what exactly is causing fever spikes, and she seems particularly sensitive to changes in temperature. If Isla has a fever of even 100, no one on the entire floor will be sleeping all night!
So, one step forward, two steps back. She looks a heck of a lot better this time than she did last time she got really ill and was intubated for 9 days. Her move back to the CICU was precautionary, not an emergency. But still very upsetting for all of us. She hasn't slept in about 20 hours. When she got her dozenth heel stick of the day, she didn't even flinch. We think she's in blind survival mode. Poor baby. Will keep you all updated!
FUSSY THURSDAY Authored April 25, 2013
Isla has had a light fever on and off for the past several hours. She had a gastric emptying study this morning, which necessitated her to go without a meal for about 6 hours. This pissed her off enormously. Poor thing has gotten disturbed every few minutes for temperature, blood pressure, and weight checks. After a particularly fussy afternoon and another fever spike to 101, the nurses decided to do more tests. She's now getting more heel pokes for blood tests and a urine sample with a cathedar stick :( Will update when we know more.
MORE TIME ON “THE FLOOR” Authored April 23, 2013
Good couple of days so far! Isla's doing well on two bottle feeds per day and plumping up like a champ.
Since her fever a couple of days ago, the doctors have been trying to figure out what caused it. The two main suspects are a urinary tract infection or a local infection to her broviac site. There are some small lumps on her femoral region up from her broviac insertion site, which are probably harmless little chunks of tissue. It could possibly be some left over material from the broviac line itself, and there was some discussion today about slicing her open to figure out what was stuck in there (to which mommy contested heartily). For now, they've decided to treat her with a course of antibiotics and see if it goes away. Either way, she isn't having any other symptoms of infection, so it sounds like the doctors are trying to cover all their bases.
Meanwhile, we are learning a lot about the Safe at Home program. Fun fact: Safe At Home is in fact an acrostic for--get ready--
Shunt dependent patient
Algorithm
For
Effective
At
Home
Outpatient
Monitoring through
Education
Obviously they've put a lot of thought into this! We're talking about getting a pediatrician in Dallas (at least until she comes home to Commerce after her next surgery), home health visits from a speech therapist at the Ronald McDonald house to help with her bottle feeding, weekly visits to the cardiologist, and some other things. Figuring out everything with insurance is quite a messy ordeal. The formula she is on costs around $500 per month (!) but will be covered since it is medically necessary. We'll also be sent home with a pulse oxygen-o-meter and medical grade scale to keep up a daily log of her oxygen saturation and weight. More pics & video added!
FIRST WEEKED ON THE 8TH FLOOR Authored April 22, 2013
We’ve had a good weekend. On Saturday about 4am, Isla woke up and shrieked until about, oh, 2pm. We had our first taste of an exhausting, frustrating love-you-Isla-but-please-shut-up-so-we-can-get-some-sleep marathon. She was running a light fever, so they drew some labs to check to see if she may be sick, but so far they haven't found anything. She had a fever of about 100 for 12 hours or so and it's gone now. She isn't showing any other signs of sickness, so we're hoping it was just an effect of methadone weaning.
When I got back from a quick trip back to Commerce this afternoon, they had taken Isla off the nasal tube, and she's doing great without oxygen support. Just as I was gushing over how cute her face was, having been hidden under medical tape for so many weeks, she flailed her arms up and whipped out her feeding tube! Once she stopped shrieking about that travesty, we had a photo shoot! It was the first time since the day she was born I've seen her whole face without medical stuff on it. Unfortunately, it was time for her next feed so I got to put in a new tube, which she didn't like at all. Now she is hanging out with a full tummy staring up at her mobile. Hoping she will sleep well tonight!
THE 8TH FLOOR Authored April 18, 2013
Our first 24 hours on the 8th floor has been a whirlwind. We are learning a ton of info, keeping notes and logs of everything that she does, and providing most of her care ourselves. Right now, the doctors are working her up towards "bolus" feeds. She has been on continuous feeds through her tube for several weeks, and the goal is to get her to tolerate 2oz in one feeding. In the next week or two, they'll also be weaning her off oxygen and her methadone and Valium. Some kids do go home with an O2 tank, but they don't think Isla will need one.
In our care conference yesterday, we met with several doctors, nurses, and specialists to talk about Isla's treatment plan. The CICU attending physician did warn us that many babies go up to the 8th floor (or "the floor" as they call it here) only to return to the CICU if they hit speedbumps. He told us that this could happen if Isla gets sick--as we saw a couple of weeks ago, normal childhood illnesses like tummy bugs can really bring them down temporarily. For now, we are adjusting to life with our baby 24/7! Some firsts today:
We had a meal in the same room as her
We sat on the couch with her
We spent the night as a family
Mom carried Isla downstairs to get X-rays at 5am...the first time I've ever carried her somewhere!
We took her on a wagon ride!
CARE CONFERENCE April 17, 2013
We have our care meeting with all of the necessary staff, doctors, physicians nurses and equipment coordinators today in a few hours. we'll have our own room and a little more privacy. The move has been a long time coming, let's hope we don't lose our minds up there!
Next big steps after the care team meeting:
Parents learn how to take care of Isla 100%
48 hours of parental only care
Release!
