Reindeer & Santa

The Christmas Season has arrived and Little Miss Minion is learning new vocabulary to go along with it. Yesterday, she asked for “reindeer song” in the car on the way home from daycare and then asked “santa coming?” off and on for the rest of the evening.

She is talking much more since her surgery and my theory is that the fluid was slowly building up and pushing on the part of her brain that controls speech. Less pressure=more talking. Some of her delay could be due to the PVL (essentially, this is dead or damaged brain tissue) but it’s hard to know for sure.

This spring brings the expiration of her enrollment in the early intervention program that gives her physical and speech therapies. She probably won’t qualify for PT since she is pretty much caught up with her peers, so that will be one less specialist. Speech is a toss up right now. There is a big jump coming in expectations and if she doesn’t keep up, she might qualify for services through our local school district. I have a feeling she will still qualify but she’s improved so much over the past few weeks, it’s hard to tell.

Hoping everyone is having a cheery holiday season so far! Remember to wash your hands and keep the cold/flu/RSV germs away!

Brain Surgery #5

First of all, Little Miss Minion is doing well and we are home. Don’t let the title of this post scare you. 
Monday night, we noticed that LMM was acting like she had a headache. She still doesn’t really talk much, but she was rubbing her head and crying off and on. She had speech therapy that night and seemed ok except for the head rubbing and generally seeming a little “off.” Tuesday was more of the same, but the problem with hydrocephalus is that the symptoms of a shunt malfunction are very subtle until they aren’t anymore. Irritability, being cranky, headaches…but when it happened for the third day, we listened to our guts and took her to the ER. They did a “shunt series” X-ray, which takes pictures of the shunt in its entirety to make sure that all the pieces are where they should be. Sometimes the distal catheter (the end where the extra fluid drains from) gets moved or blocked. Sometimes the system gets disconnected. Everything looked ok on the shunt series but they couldn’t explain the crankiness and headaches so the neurosurgeon wanted a CT scan to see the ventricles. Sure enough, one of her shunts had stopped working so the cerebrospinal fluid wasn’t draining like it should have been. 
They admitted us to the PICU (pediatric intensive care unit) to monitor LMM and decide on the timing of the surgery. As soon as we knew the shunt wasn’t working, surgery was a certainty. There is no other way to “fix” hydro. So we were taken to the PICU to spend the night. 
LMM is now two, and she knows a little bit more about what is going on. She handled it really well, and fell asleep on me while we were walking down to the surgery suites. They gave her a little bit of a sedative to keep her calm while they took her back to get prepped and while it was kicking in, she started cracking up laughing. It was a nice stress reliever. 🙂
The neurosurgeon came out after surgery to talk to us and said the surgery had gone well. We got to come back and see her in recovery while the anesthesia wore off soon after. After a few minutes back in recovery, we were cleared to go back up to the picu. As they were wheeling her out, the nurses at the central station all waved to her and she waved back from her bed. 
Within an hour, she was chugging water. An hour after that, she was onto jello, and soon after that, she was cleared for real food. Everyone was impressed at how fast and how well she was coming off the anesthesia. Last time, she was groggy and slept for most of the day. That was also about 23 months ago, so she was much smaller. 

We were discharged the following afternoon and LMM has been back to her regular happy self. 🙂
Many thanks to the incredible nurses we had this time. This hospital is not our first choice, but it is the one that her neurosurgeon primarily works out of. Our nurses were hands down the best we’ve ever had at this hospital. 

Looking Good

Little Miss Minion had a follow up MRI this morning to make sure that the old shunt is working, the ETV is working, the new shunt is working, and that there aren’t any pockets that aren’t being drained by the aforementioned methods. And the verdict is….Cleared until February 2016! The neurosurgeon was “ecstatic” and “very happy” with how her MRI looked, so hopefully we are in the sweet spot where everything is in balance.

Her physical therapist is pretty happy with her lack of regression over the past month. We’ve had to cancel 2 sessions because she was either in the hospital or still recovering. Usually, babies regress much more after surgery and she had two in two weeks.

She’s started playing with her toys more. She grabs them and actually grips things. After her bottles and 20 minutes of upright reflux rest, we usually lay her down on her mat and let her play with her toys. They hang from a support so she can bat at them and grab them. Her favorite is a zebra that Mr Minion named Paul, because “why not?” Next is a fish that I named Joe after Joe Pesci, whose real name is Joey Fisher. Then we realized that we had Joey and Pauly, the Goodfellas gangsters, so we named a doll that she loves Marie, since all the guys were married to girls named Marie in the movie.

She holds rattles, sucks her thumb, puts everything in her mouth, sucks on clothes, her hands, toys. She smiles and laughs all the time. She’s really nailed rolling onto her side, but she can’t quite make it all the way over consistently yet.  Her abs are not as strong since they added the second shunt and catheter, but she’s bouncing back really well.

She got her first RSV shot this week. She’ll get one per month for 5 months to help boost her immune system’s response to rsv. Most recent weight: 11 pounds,  9.3 ounces.

Finally

So, in my last post I talked about Little Miss Minion’s recent shunt surgery. It was at the hospital we hate (see other shunt revision posts for more details), and this trip was no different than the others. Between having roomates, having her sedation reaction not being noted in her chart, and the general air of incompetence, we can never get out of there fast enough. If it wasn’t for her neurosurgeon, who is FANTASTIC, we’d be getting medical care elsewhere.

Immediately following her surgery, while she’s being bandaged up and taken out of sedation, the neurosurgeon comes to talk to us. He always starts off with how surgery went, how she’s doing, and explains exactly what he did (sometimes the plan changes due to what he sees). Then it usually takes about 10 minutes for them to call us back to recovery to see her.

It was 40 minutes before Mr Minion went to the desk to ask what the delay was. We were thinking that something was wrong. Was she having another sedation reaction? Was she bleeding? Was she not waking up? What was taking so long?

We think they forgot to call us back because as soon as Mr Minion went up to the desk and said it had been 40 minutes, the attendant said they were just getting ready to call us back. I call shenanigans.

We hurried back to the recovery area, knowing she would be upset from sedation and still worried that something else had happened. We turned the corner and saw her being rocked by a nursing assistant was was attempting to feed her Pedialyte while LMM cried. Not only was a stranger holding MY DAUGHTER (cue panic of contamination, contagion), but she was already coming out of sedation and was hysterical. I immediately went to take LMM from the nurse assistant, but before I could, she backed away from me and moved LMM out of my reach, telling me to sit down and how to hold my arms, reminding me about the IV, telling me that LMM was groggy and upset. I held back the verbal assault that nearly escaped from my mouth because I wanted to hold MY DAUGHTER.

Since I can’t tell her in person, and since she clearly didn’t read LMM’s chart about her 84 NICU stay and her complications, I’ll put it here instead.

Dear Nursing Assistant Lady,

Don’t ever try and keep my daughter from me. I’m her MOTHER: I have watched her struggle to breathe, to live, with a sheet of plexiglass between us because she was too fragile to be held. I have held her with an IV, a PICC line, a feeding tube, a CPAP machine, nasal cannula. I have held her through three blood transfusions, through countless heel sticks, and with a respirator when she had meningitis. I have navigated around heart monitors, apnea monitors, and respiration monitors while doing my first ever diaper change on a baby that weighed less than 2 pounds at the time. I spent 84 days with her in the NICU, learning how to touch her, how to hold her, how to interact with her. I learned to read her body language, her cries, her cues. You may have medical training, and you may think you know her, but you don’t. You certainly don’t know me, or you would have called us back much sooner than 40 minutes after surgery. You say she “was fussy” after surgery and that’s why you delayed calling us back. Who wouldn’t be fussy after their 4th brain surgery at 6 months old? What would make you think that you can calm her with rapid rocking (Preemies hate that) incessant singing (also hate that) and shoving sugar water down her throat? Why wouldn’t you immediately page HER PARENTS back to calm her, instead of letting us sit in the waiting room for 40 minutes, thinking unimaginable things.

We are her PARENTS. We know her best. But I do have to say thank you for one thing. Thank you for finally making me feel like a mother, even though its taken 6 months to get there.

Shunt Revision

Shunts have a 30% failure rate during the first year. It looks like we are getting ours out of the way early.

I took Little Miss Minion to the pediatrician yesterday because she was hysterical for most of the day. I figured that she had an ear infection and those are a big deal with shunts. She had also been doing this thing with her eyes called “sunset eyes.” This is a term used for when a person’s eyes look downward and appear wider than usual. Picture surprised eyes, looking down at your feet with your head facing straight ahead. Pupils are in line with the bottom eyelid. This is a sign of pressure within the skull.

The pediatrician sent us to the emergency room of a children’s hospital  (not our previous one) to get checked out. Apparently our usual hospital doesn’t have a pediatric neurosurgeon on call.

I’ll try to keep the language here PG, but the rest of the night was an absolute shit show. LMM was fine the whole time-this was an issue between us and the medical staff at the hospital. As you are all aware by now, she was born at 28 weeks gestation. This means that she missed out on the entire 3rd trimester antibody transfer, which means that she has a compromised immune system. We were told during our NICU stay that she is highly susceptible to infection and that she needs to not be in public places, especially once cold/flu/RSV season begins. Any kind of respiratory infection will send her to the hospital and will probably require intubation (breathing tube/respirator).

We got to the ER and the first thing I see is a little kid coughing. Luckily, the triage nurse put us in an unused office to wait, since she is a Preemie. From there, we were admitted to the ER and got several scans done. They did an x ray shunt series, which takes x rays of her head, neck, chest, and stomach to make sure the shunt is positioned correctly. They did an MRI to see the exact location and position of the intake end of the shunt, and they did an ultrasound through her fontanel  (the soft spot on the top of babies’heads) to see the fluid levels within her ventricles.

After we were admitted to the hospital itself, we were taken to the Neuro floor. Well, we were told it was the Neuro floor. We were taken to our room and were shocked to find that we had a double room with a toddler (maybe 3-4 years old) and what appeared to be the entire extended family.

Little Miss Minion has only been to 4 places in her entire life: the NICU, our house, her pediatrician’s office, and my mom’s house. The concepts of isolation and quarantine were drilled into us at the NICU, and for good reason. She can escape the Hazmat bubble when she’s bigger and her immune system has developed more.

We talked to the nurses, who brought us the charge nurse. None of them seemed to understand the concept of prematurity and immunity problems. It was shocking. It took an hour and a half from that conversation to speak to the on call pediatricians who were following her jointly with the neuro team. We explained the situation to them and they seemed to not really understand the severity either. They managed to get us an empty patient room though, around 2am. We refused to leave her in the joint room with the family reunion going on, so we holed up in a consult room and planned on taking turns sleeping in her patient room, since her nurses told us we couldn’t sleep in the consult room. She had an IV port placed in the ER, and during our 5 hours in the consult room, no one came in to check on us or to flush her IV. If you don’t flush it, the blood will clot and ruin the IV.

After we were moved into a private room, our nurse pretty much ignored us. She came in once to check blood pressure, couldn’t get a good reading, said she’s be back, and never did. We were forced to wrap LMM in adult sheets because there were no pediatric blankets to be found. Her IV started leaking at some point, probably because it hadn’t been flushed. When they hooked up the fluids, they commented about how sluggish it was. I resisted the urge to tell them it was probably because no one flushed it. We also found out that the floor we were on, which we were told was a neuro-only floor, also had general pediatric patients on it. This means kids with actual illnesses, not just neuro issues. Kids with coughs, colds, runny noses, etc. Contagious things.

The empty room we were moved to had an isolation cart outside already. The nurses this morning assumed she was in isolation, and we haven’t corrected them.

What we’ve learned from this experience is that we will never return to this hospital. We will need to figure out how to arrange care for her at “our” hospital because the compete lack of common sense among 99% of the doctors and nurses is absolutely unconscionable. We were told during NICU discharge class that being a nicu grad is a big deal, medically. They told us that when we go to the pediatrician office, we are to tell them about her nicu stay and be placed in an exam room to wait or to go to the well baby room. We were told that she needs to not be in day care. Don’t take her to public places, like restaurants, grocery stores, the mall. Limit her exposure until she’s big enough and strong enough to handle it. I still cannot believe how we were treated here, how no one seemed to understand how big of a deal this is for her.

When we go back to her pediatrician, I will be getting a letter and/or a note made in her chart that she is to be isolated from other patients and their families. I don’t understand how we were told, and told often, about the need for isolation during our nicu stay and then have her placed in a room full of strangers. I will also be writing letters to everyone I can think of so that this doesn’t happen again to us, or to the family of any other preemie.

Her surgery went well. We can go back and see her in a few minutes. Neurosurgeon said we could be out tomorrow.