Another week, another ER trip

Emily earned herself a trip to the ER yesterday, after a long 4 days of trying to avoid it. On Friday, she had a bronchospasm that lasted three hours. It was horrible, but she was managing to maintain her oxygen saturations, so I waited it out. It did worry me and I packed a bag for the hospital, but then of course the spasms stopped. It was definitely the scariest breathing episode she's ever had. The GOOD thing is that it proved that the trach was the best thing we did for her. She was able to breath and get nebulizer treatments and suctioning without a fight. What a relief the trach is! Saturday she had another bronchospasm that lasted an hour. During the spasm I gave her a dose of Ativan, thinking it might calm her down. Thirty minutes later she was still spasming so we gave her breathing treatments even though they weren't due for an hour. Then she got some other medications that she was due for, and finally it calmed down. This time when she was spasming, she was not maintaining her saturations. Again, thank heavens for the trach! I was able to hook her up to oxygen and manage her at home. I did page the pulmonologist when this episode finally ended though, because I needed help with managing these. She called in a prescription for Atrovent nebulizer treatments, and told me to try that along with the Ativan in the j-tube next time it happened. So of course, Sunday, it didn't happen at all. We thought that whatever it was, was over. Until Monday morning, when she woke up doing it at 8 AM. Her morning nurse banged on my door to wake me up (Don't judge! LOL Jacob had the day off from school so we were sleeping in). She said "She's not breathing good! Come see please". Ugh, nothing like that to get a Mama out of bed quickly. I went in, and she was spasming again. We gave Atrovent via the nebulizer, Ativan via the j-tube, and waited a little. It stopped after about 20 minutes. We thought we were good, and then it started again. It went on, off, on, off. I paged the pulmonologist again and said we needed to be seen. She told us to come to the ER. We went in and did a chest xray, trach sputum culture, and some swabs. Her xray was normal and her swabs for RSV and Influenza A & B were negative. They tested her CO2 end tidal volume, and it was good. The decision was that we could go home, and raise her oxygen a bit while we wait for a sleep study. We know she has sleep apnea, and it's most likely central apnea. The pulmonologist feels that she will end up on a vent when she's sleeping, and wants to do part of the sleep study with her awake. Seems like an oxymoron to me. ;) She wants to get a better idea of what the spasms are. So, here's to another week of another journey. Hopefully it was the last issue we will have for a while! We have been home from the hospital for 3.5 weeks, which is a pretty good run for us lately!

We made the decision ...

Emily was discharged from the hospital last Thursday late at night, after a 16 day stay and antibiotic treatment for a line infection. She gets line infections because her motility is horrible, and causes a leaky gut. So we went home Thursday night, and I got her TPN prepared. When I lifted her shirt to connect the TPN to her Broviac, I realized that the nurse who discharged us must have pulled the line somehow. It was coming out of her skin a bit and had been bleeding. I took pictures, redressed it, and sent the pictures to the GI and TPN nurse. They called the next day, Friday, and said to bring her in for xrays. We had to be sure that her Broviac line was still in far enough to use for TPN. As I prepped us for a quick ER trip for an xray, Emily spiked a fever. Of course. So we headed to the ER, only 14 hours after being discharged. They did labs and blood cultures, but her fever had dropped and she was acting fine. They sent us home. Saturday night they called to say her cultures were positive and we had to come back inpatient. :( We went in late Saturday night, and got a room of the pediatric floor early Sunday morning. This coming Monday, Emily will go to the OR to have her Broviac pulled. The will place an IV so that she can continue some nutrition, although it won't be her regular TPN. She is scheduled for surgery Wednesday, to place a new Broviac. She is also going to be getting a tracheostomy. This was a hard decision. We have gone back and forth over whether she should have a trach or not. Her breathing is great, her lungs are clear. But her vocal chord spasms are out of control and there is nothing else we can do about them. When she has these spasms, she has horrible coughing episodes and gagging/choking spells. She desats, turns blue, but worst of all she really PANICS. It scares the crud out of her. We can't easily suction her, because of her oral aversions. I manage to suction her orally but it's not easy. Trying to deep suction her, through her nose, takes four adults to hold her down. It's not feasible. So in order to prevent aspiration and allow her to breathe without coughing and panicking, we are going ahead with the trach. It is an impossibly hard decision to make. I am trying to remain optimistic. I am hoping that she will be able to make noises and laugh audibly, even with the trach. This is big surgery she is having. She will be taken to the PICU after surgery. I will try and update here as soon as I can!

It's been a rough road but it seems to have calmed down!

I haven't kept this blog updated, and I feel bad for that. I hope that most of you have found me on facebook, because I am better at updating there. I have lost almost 50 followers over the last 4 months. :( Hopefuly I can earn them back!

So here's the recap. Emily had been retching and vomiting every morning for months. It started in January, and progressively got worse. She had been getting three bolus feeds of blenderized diet during the day, and 12 hours of g-tube feeds overnight through the pump. She started throwing up in the morning to the point that she was losing weight and becoming dehydrated. The GI said he thought it was seizure related.

In March it was so bad one day that I took her to the local ER, because I assumed it was out of control seizures. They loaded her with ativan and such and sent us home. The next day it was just as bad, so I drove to UCLA where we see neuro. We were admitted through the ER for an overnight VEEG. The vomiting and retching were unrelated to seizures. We were discharged after two days. We made it a week at home, and then had a GI appointment. I explained that it was NOT seizure related, and it was getting worse. The GI said (in his exact words) "She looks like shit. You need to be admitted right now". We were admitted to CHOC and began testing. An Upper GI showed a loose but intact fundoplication and no hernia. An endoscopy showed redness consistent with persistant vomiting but no abnormalities. Biopsies were normal. Her g-tube was changed to a gj-tube, and we tried feeding through the j port instead. A gj-tube goes in the stomach and then threads into the jejunum (intestine) to allow you to feed the patient and bypass the stomach. This made things much worse, she would scream in pain and vomit bile non-stop. She had a PICC line placed, and was sent home on TPN.

We were home for 3 days and then we had a pediatrician's follow-up appointment. She sent us straight to the ER. Emily was still retching non-stop, even on TPN, and had a UTI. They discharged us with meds.

Two days later Emily had her VNS (electric implant for epilepsy control) surgically placed at UCLA, she went home the same day. The next day we went to CHOC's ER for continued vomiting. This time she had an Upper GI done with small bowel follow-through, although it was done incorrectly so it didn't give them any information. They started worrying about pancreatitis or gallbladder problems. We did ultrasounds four times, a CT scan, and many xrays. She has sludge in her gallbladder but nothing more. During this stay she pulled her PICC line out and had to get a new one. We were inpatient for 8 days and discharged still on TPN.

Two days later we took her to the ER at UCLA because CHOC had said they didn't know what else to do with her, and she was still retching. She was diagnosed with another UTI and had another Upper GI done. She was discharged after 3 days.

Two days later (notice the 2 day at home pattern) we had to go back to UCLA to the Urgent Care, because she was throwing up the antibiotic they had prescribed for the UTI. She was then prescribed IV antibiotics which I did at home with the TPN.

The day after this ER trip, we went to the ER at CHOC because she was draining blood from her g-tube. They said it was to be expected when you retch as much as Emily has been. Her blood counts looked okay, so we were sent home.

Two days later (see!) we were back in the ER for screaming and retching. We were admitted to CHOC for almost 3 weeks. They ran more ultrasounds, xrays, etc. Durning this stay she finally had a Broviac placed. It came out two days later and was replaced. She was sent home again on TPN, and CHOC said they had no clue what to do with her. They kept saying she should go to UCLA and be considered for a small bowel transplant. But they couldn't tell me what was wrong with her, so how could they say this? It was a nightmare. At one point during this three week hospital stay we were told we should take her home on hospice. Ugh. The pain team was consulted and she got some relief. Thankfully we decided not to do hospice since, again, they had NO idea what was wrong with her.

We were home for almost a week and then took her to the ER with a fever. Anytime you get a fever over 101 with a broviac (central line) in place, it's an immediate ER trip for blood work. Luckily her labs were good, so they said it was a virus and safe to take her home. Two days later (damn this two day pattern!) they called back and said to return her immediately to the ER. Scared the crud out of me. Turns out she had a UTI and they needed to prescribe antibiotics. They couldn't just call them in to the pharmacy?

We made it almost three weeks at home, and then the retching got worse again. We went to a GI appointment and were told "Emily is a mystery. Somtimes we don't even try to figure her out anymore". That is not very reassuring! So we took her to the ER at UCLA because their GI and motility departments are award winning. She was admitted for 10 days. She was diagnosed yet again with a UTI. She had a gastric emptying study, electrogastrogram, and some test where they determine your caloric needs based on your O2/CO2.

During this last stay at UCLA, they managed to get her off of 6 meds CHOC had put her on. They started her on a couple of new meds. The biggest thing we did her was to compress her TPN to only 18 hours a day, instead of 24. In between, she now tolerates some blenderized diet again! Before we feed her, we give her something called "magic mouthwash" through her g-tube. It's a mixture of viscous lidocaine, benadryl, and mylanta. It numbs up her stomach enough that she tolerates some feeds.

She has finally gained some weight, she is 33 pounds! They would like her at 35. Remember she's almost 8 years old. She's teeny. :) She is finally into 5T clothing for once. We still don't know for sure what is going on, but we have narrowed it down a bit. We know her stomach works decently, it's all the small bowel and intestine that don't. What we will do about it depends on how she does over the next couple of months. The hope is that her GI tract will wake up a bit and she will be able to get off of TPN.

That is the long version. :) In the meantime, Jacob graduated from 5th grade and is now officially a middle schooler. Emily is a 3rd grader now. We are getting ready for Jacob's birthday party this Saturday, I cannot believe I have an 11 year old! I will post again soon, and hopefully be a regular updater again. :) Thanks for not giving up on us!

Remember that hole I said I retreat to?

Well I am stuck in it. I imagine I have lost a bunch of my followers since I haven't posted in FOREVER. I hope I can get you back!!

I really do retreat when things are crappy, and things are definitely crappy lately. Emily has a kleb. bacterial UTI right now. We spent the afternoon in the ER doing chest xrays and nasal flu swabs. She has been retching and gagging and coughing up this phlemy crud all week. Today at school she was doing it and she stopped breathing each time. They freaked out (go figure - it seems we are all sort of addicted to breathing!). I picked her up and went straight to the ER. We got the all clear, but they said her sinuses are a wreck. We have winds here called "The Santa Anas" and they are warm and super strong. They spur everyone's allergies, and evidently Emily is not immune to this.

We are going on Monday afternoon for her VNS surgical consult finally at UCLA. I hope and pray that they can get us in for surgery quickly. I am going to ask about having a port placed at the same time.

If you haven't given up on me, thank you! I promise to try and post more often. I have pictures and things to catch up with on my blog and I will do it soon!!

Home from the ER

We're home. The ER thinks that his Ambien needs to be stopped immediately, which I agree with. Unfortunately, he has serious sleep apnea. The ENT can't get us in for 3-4 weeks to remove his tonsils and adnoids, and then says he thinks that will only have a 50/50 chance of helping his apnea. His tonsils are hardly enlarged at all. He wants to try it first though before resorting to CPAP. My thinking is that he needs CPAP now - while we want those weeks! The ER guy agreed, and said sending a kid home with a sleep study as bad as his was is not right. I have to call the pediatrician at 8am and get in tomorrow for a follow-up and to figure out what we are doing next.

So here's what we think happened. The Ambien caused dizziness and while running in PE, he fell. He got up and ran again and fell .. over and over. Why the hell the PE teachers didn't notice this, I don't know. I will for sure be talking to the principal tomorrow! When he fell, he hit his head and got a concussion and a some sprained fingers.

The poor dude was so disoriented, throwing up (trying to, past his fundoplication), babbling nonsense, hardly able to walk. It was really scary. Luckily the CT scan showed no damage. They were really concerned for a while which freaked me out.

He is home and sleeping now. They gave him Ativan, and told me that he was okay to sleep. Hopefully he'll wake up feeling better. Bummer thing is that he was supposed to start tennis lessons today.

In the ER with Monkey

The scool nurse said he was dizzy and disoriented. I picked him up, he seemed drunk. He was stumbling around and making no sense when he talked. Took him to the ER. He told me in the car he fell during PE. CT scan was normal. Friends at school say he fell running a lap. Stood up, kept falling. Was talking but not making sense.

We're in the ER waiting for amswers.

Took an ambulance ride to the ER

My girl has never had a seizure before, but her EEG's showed spikes indicating the potential for seizures. I've been told she will have seizures at some point, and we've been lucky so far.

Not anymore. She had a 45 minute on and off episode and then was unconcious. Neuro said to call 911. We did blood and urine work, and for some reason chest xrays?

The ambulance brought us to the closest ER, so now that's awake and back to baseline we are waiting to be transported to children's hospital. They're going to do an mri or ct as soon as we get there.

Please pray for my Peanut. I am so scared about seizures!