Friday, April 29, 2011

One Year Down. Sadie by the Numbers.

One Year Old
365 Days
3 hospital stays
100+ doctor appointments
251 therapy sessions
15 different medications
2 intubations
5 days on a ventilator
5 prosthetic shells

Countless smiles, coos, smooches, and loving glances

Happy 1st Birthday darling Sadie.

Monday, April 18, 2011

The Wrong Side of the Crib. Team Sadie.

Since Sadie's been home from the hospital she's been a little crabby. Adin likes to say that she woke up "on the wrong side of the crib."

She is still attached to three cords - one for her oxygen, another in her nose (NG tube) for feeding, and a third attached to her foot (her pulse oximeter which monitors her O2 levels) Most likely, she is mad about all the darn cords attached to her. Although she may also be pi*&?ed that she can't wear her cute outfits. Her current attire is old sleepers with one foot cut off. You see, she currently can't wear clothes that go over her head due to her oxygen tube, and she needs one foot free for her O2 sensor. Thus, our one-footed sleeper invention. Adin says we should market it and make millions ;)

Our days have become exponentially busier as Sadie is always cycling between feeding time, oxygen monitoring, breathing treatments, and medication administration. Nursing was never a career I considered, and I'll admit, it's a little stressful. Good thing I love my patient. We are hopeful that we can wean her off of the oxygen soon, and the NG tube will go away once she shows no aspiration in her swallow study.

Our hospital experiences with various medical professionals have made us extremely grateful for the team we have in place to oversee Sadie's care.

Dr. Lori Walsh, Pediatrician - I knew Dr. Walsh was a keeper from the moment I met her in our prenatal visit. She was truly interested in Adin's PKU (Phenylketonuria). She even called at 8 pm one evening to discuss what she learned about the genetics of PKU. Dr. Walsh has been the key player in coordinating all of Sadie's care. She truly understands Sadie and her condition and has been the ultimate partner throughout Sadie's journey.

Dr. Srishti Nangia, Epileptologist (a long word for "seizure doctor") - Both times Sadie was inpatient at Children's Memorial, Dr. Nangia visited us every single day - including weekends. We've been on the roller coaster with Dr. Nangia since the very beginning. She helps us through ups and downs, listens carefully, and knows Sadie quite well. She is a wonderfully compassionate, thoughtful, and caring doctor.

Dr. Hawke Yoon, Opthomologist - We met Dr. Yoon when Sadie was just three weeks old. Our journey to her diagnosis started with Sadie's eye exam under anesthesia. He quickly won our hearts when we asked about the procedure. Not finding a piece of paper handy, he pulled out his pen and started drawing a diagram right there on the bedsheet. The first few months of Sadie's life, we saw Dr. Yoon almost weekly. And he just has a cool name.)

Dr. Tadanori Tomita, Neurosurgeon - Dr. Tomita monitors Sadie's choroid plexus papilloma. Sadie receives an MRI every few months to check the growth of the tumor. If it gets too large, it can cause a condition called hydrocephalus, which would require a shunt and brain surgery. We know that we are in good hands with Dr. Tomita.

Roland Scott, Ocularist - Roland Scott fabricates Sadie's eye prosthetic (conformer). He fits Sadie's eye very carefully, and given how sensitive her eye is, we see him quite frequently. She gets larger conformers every few months as she grows, and he is always very careful and patient as he molds and fits each of them. Ocularists are hard to find - there are only about six of them in the Chicago area. Roland is actually the second that we've seen as we weren't entirely happy with the first. We joke that his lab resembles Dr. Frankenstein's - pots boiling over, him in a white lab coat, but overall, we've been very happy with his work.

Robyn Blackford, Ketogenic Dietician - Robyn oversees Sadie's ketogenic diet. Even though she was booked with patients, she helped us get Sadie into the hospital to start the diet on an emergent basis when her seizures were almost non-stop. She is a wonderfully knowledgeable and kind individual.

Michelle Johnson, Home Nurse - It was Michelle who ordered Sadie emergency oxygen for us to have in the home. A week later, Sadie ended up needing that oxygen to get her through until the ambulance arrived. Had we not had the oxygen, Sadie would likely be in much worse condition. Michelle was introduced to us through a great organization called Hope's Friends.

Team Sadie will be growing this week, as she has appointments with a few new specialists - a pulminologist (a doctor specializing in respiratory issues), and a urologist. We hope the pulminologist will be able to offer some insight into why these darn respiratory viruses have hit Sadie so hard. And, although she is now pee-ing more frequently (pause for knocking on wood), we initially made the urologist appointment after she was holding her urine for up to 12 hours between diapers.

I'll brag about her therapists (who are also wonderful) in a later post. Although we would change it in a heartbeat, we are grateful that we have gotten to know such wonderful medical professionals and feel confident in their care for our darling daughter.

Friday, April 8, 2011

Sadie's first ambulance ride. Prayers, prayers, prayers.

Looking at the title of the last blog post, I hope I didn't jinx poor Sadie. After battling cold symptoms for a few days, Sadie awoke early Tuesday morning with labored breathing and a "barky" cough. We hooked her up to the pulse ox to check her O2 levels. The machine read 83%...we started panicking. Luckily we had the emergency oxygen her home nurse had sent over the week prior. We started her on O2 and she quickly rose to 100%. Adin and I knew that we had to call an ambulance to transport her to the hospital, as we couldn't take her without supplemental oxygen.

The ambulance arrived at 2 am, and delivered Sadie and I to the ER at Lutheran General Hospital. Ambulance protocol is to take the patient to the nearest ER. I was a little nervous being at a different hospital than Childrens, which we know so well. Although I prefer Sadie's doctors at Childrens, we've been quite pleased with the staff and facility at Lutheran General.

We are on day 4 in the pediatric ward. What started as cold symptoms turned out to be metapneumovirus, which is similar to RSV (the virus that hospitalized Sadie in January). Sadie is also showing some cloudiness in her lungs, which could be a mild case of pneumonia. The doctors are trying to figure out why these respiratory viruses are so hard on Sadie. They suspect aspiration, which is where some of the liquid one consumes goes into the lungs instead of the stomach. She will be having a swallow study to explore this further. In the meantime, all liquids are going through an ng tube (through nose, down throat, in tummy). She REALLY did not like that ng tube going in, and actually punched the nurse with her little bandaged IV hand.

Throughout her hospital stay, her seizure activity has been quite low. And, we finally were blessed with her first seizure free day*. I always feel like I need an asterisk after that statement, as it is possible she had a twitch here or there that I didn't see, or a mild episode in her sleep. The picture above is the page from Sadie's journal showing her first day with no seizure activity. We have been keeping these journals since she was 4 weeks old (we're now on journal #3.) Each page is a different day. We track the time and duration of the seizure. I used to count every single spasm per cluster, but once they got up into the hundreds it was just too depressing.

We also track her fluid intake and diapers in the journal (since she has decided to hold her pee for hours and hours, and poo for days. More about that in a future blog post.) We have also been advised to see a pulminologist to oversee Sadie's respiratory issues. Her team of doctors grows.

The analyst in me wants to overanalyze exactly why her seizure activity has been so low. (I see a spreadsheet in our future:) But for the time being, I'll be grateful for this blessing. Maybe all of your prayers are working. Keep them up!

Sunday, April 3, 2011

Social Sadie. Warning, sickness ahead.

The past few weeks, Sadie has been quite verbal and is often taken to having long conversations in her crib in the middle of the night. She's not cranky or upset, she just wants to chat. She'll do this for hours on end, but simply prefers to do it between the hours of 12 and 4 am. We hope this bodes well for her future verbal ability.

She has also been quite active, and has gotten close to rolling over. She keeps herself entertained talking and moving, moving and talking for hours at night in her crib. Adin and I will alternate getting up to check on her. The conversation usually goes something like this.

Cathy: Honey, can you get up and check on her?
Adin: Arrgh...
Cathy: I think she just said "daddy." She obviously wants you.
Adin: Arrgh... (rolls onto his side and climbs out of bed)

Seeing as how she likes to communicate with us, we've started to teach her sign language. We're currently teaching her two signs - "milk" and "more." We've done better with the "milk" sign, and swear that she is trying to do it on her own!

She also does a funny thing when she's dosing. Her eyes are little slits and we ask her if she's "fake sleeping." She typically responds with a big smile although her eyes are still mostly closed.

Speaking of sleep, we broke down and tried the melatonin one night. She slept for a record four hours (four hours, people!). Unfortunately, the next day was a crazy high seizure day for her. Its hard to discern whether it was the melatonin or another factor. So for the time being, we're holding off on the melatonin until we're at a more stable place with her medications.

Speaking of medications, Sadie is still on her four seizure meds (Topomax, Vigabatrin, Clonazapam, and Dilantin). The latter two are the ones that seem to be showing some positive improvement. We're still weaning Topomax, albeit very slowly. Vigabatrin will be weaned next. It will likely take us until June or July to get her off both, as long as we see no adverse effects.

Speaking of adverse effects, we've heard from many people that seizure activity often spikes right before a child gets sick. We think that is what happened with Sadie earlier this week. We spoke with the on-call neurologist after she had a really rough night and morning - seizures happening every 5 minutes. The neuro advised us to give her Diastat (emergency medication). This is a huge thing for us, as it was the first time we've administered Diastat at home. It was a little nerve-wracking, but it stopped the seizures. She, of course, was way out of it for the rest of the day. Not suprising, as Diastat is a form of Valium.

Because Diastat can suppress breathing, we hooked her up to her new pulse oximeter to monitor her O2 level. Pre-diastat, her O2 was about 95%, post-diastat she hovered around 85%. I was again on the phone with doctors, and was trying to avoid the dreaded "take her to the ER" response. (Sidebar - love love love the folks in the ER at Children's, but we feel like the past few times we've been there, Sadie's been hit by a wrecking ball as they try to get her O2 levels back up.)

So, we took her to the pediatrician. Luckily by that point, her O2 had gone back up into the 90s....whew - crisis averted. In the meantime, our lovely home nurse (who sees Sadie once every two weeks) had an oxygen compressor and tanks delivered to our home. So - we've added to our beautiful collection of medical equipment. Lo and behold, two days later, Sadie comes down with a horrible cold. The seizure increase served as our warning sign.

We forge ahead as Sadie approaches her first birthday at the end of this month. So hard to believe that our little girl will be one soon. Even through all the hospital visits, doctor appointments, therapy sessions, etc., she has been our joy and the light of our lives.