Another trip to the ER for Memorial Day Weekend!

Well, Jenelle just couldn't go longer than a week without a trip to the ER. Just as we began Memorial Day Weekend with some fun at home, Jenelle started crying inconsolably with a fever of 101. It was around 9:30 on Friday night when I put in a call to our doctor to see if they had Saturday office hours - I was convinced she had another Urinary Tract Infection because her crying was sporadic. I really did not want to go back once again to the ER. However, once the on-call doctor returned my call and heard Jenelle's symptoms and recent history of meningitis, she insisted we take her to the ER if not then, first thing in the morning. Dreading the ER on a Saturday morning, I called ahead to find out they were actually not busy, and opted to take Jenelle in that night to "get it over with!"

At the ER, we had the same nurse who admitted us less than two weeks ago, and a doctor who recognized us from a recent visit prior to that. Literally, we've been to the ER at least once a week in the past 6 weeks, except of course for the week we spent at CHOC. They ran blood and urine tests which were normal, and sent us home around 2:30 a.m. The ER doctor felt Jenelle was probably coming down with a "viral" infection (she had a slight runny nose on Friday) which of course would explain the slight fever. Of course with the recent Meningitis, we had to be careful. We slept in the next morning, and thankfully with the help of Children's Tylenol Cold, we made it through the rest of the weekend without a runny nose, crying or fever!

Just a few minutes before we thought we needed to call the doctor on Friday, I was able to "capture" Jenelle's laugh and giggles on a video clip. I've posted the clip at a website I created on MSN under the "Documents" category on the left hand side. Go to the Curran Family Home Plate on MSN Groups to enjoy it (you may need to create an MSN account for free to view it!) I've also posted two "still" photos below that show Jenelle's new smile on this website as well.


Still photo of Jenelle's laugh 


and another smile! 

She has been laughing and smiling daily - though we aren't sure yet what provokes her. Still, the reward of laughter is small, but one we will greatly accept. Our Kidney Doctor appointment was postponed because Jenelle hasn't had her ultra sound test yet, which has now been scheduled for Monday.

As always thank you for the continued prayers. I'll keep you posted!

Appointments with the GI Doctor & Regional Center

We had a busy day with Jenelle yesterday and fortunately it was appointments that kept us busy and not the ER! Our day started out with a trip to the GI Doctor. As I said previously, Jenelle has not gained weight in 15 months, and has not grown in height in almost 12 months. They agreed that a G-tube is necessary. Some of you have asked, so I'll try to describe a G-tube; it is a tube that is inserted directly into her stomach so that food can be provided via a tube, and not by mouth (think Terri Schaivo). The GI Nurse Practioner said she felt we could probably get by with minimal use of the tube for distribution of meds and nutrition in the mornings and evenings, and give "oral" foods during the day when meds are not being given. She didn’t think it would take long to catch Jenelle up on her weight but could not give us an estimate of how long Jenelle would need the tube. That has been my biggest concern because I have been told hat once a child is on a G-tube, it is hard to get them off it. We are now waiting for insurance authorization to set a date for surgery (out patient) but were told Jenelle could have the procedure in the next 10 days. While she is having the surgery for the G-tube, they also want to run a test and biopsy for reflux. This may require a 24 hour stay in the hospital because a probe needs to be inserted into Jenelle's upper GI tract to measure PH readings and look for cell damage from stomach acid, if any. So technical!

Yesterday afternoon we met with Regional Center for Jenelle's bi-annual IFSP (Individual Family Service Plan.) This was actually Jenelle's last IFSP as she will be transitioned to our local school district in October when she turns 3. When that happens, we'll be dealing with the world of "IEP" (Individual Education Plan - those of you in special needs education know what I'm talking about!) We have a new case worker, and from what I'm hearing from other families, we've been very lucky to have had our first case worker for so long. I was very happy with this "new" case worker because she had already prepared contracts to keep all of Jenelle's therapies the same, and was quite open to our request to have Jenelle evaluated for Speech Therapy. Usually Regional Center only pays for a child to get Speech Therapy if the child is at the developmental level of 18 months (which Jenelle is not on paper). However, she agreed that we certainly had reason to request an evaluation because Jenelle has been showing more signs that she understands words and knows people by name. It would be wonderful to get this therapy started prior to her entering the school district in October, so I hope that works out. We will meet again in 3 months to have Jenelle evaluated by the school district, and get that process started.

Jenelle started back to school this week and seems very happy to be back in her old routine. She has been having more bouts of giggling to the delight of her teachers and caregivers. Unfortunately our worst complaint of late is insomnia again! Poor Jenelle can't seem to find a way to get sleep when we put her into bed, so of course, we are sleep deprived as well! I spoke to UCLA today about it and they wanted to check her Dilantin levels, but felt is may be the culprit. Other than that - no complaints as our lives are slowly getting back to normal, whatever that is for the Currans!

We thank you all for the continued prayers and wish you all a wonderful and safe Memorial Day Weekend. Our next appointment is with our Kidney Doctor on June 1 - I'll keep you posted!

Jenelle is home!

Jenelle was released from the hospital on Wednesday and we finally got home in the late afternoon. Jack was very happy to see his sister again, and she even managed a small smile for him as well. We have found it is better for Jack if we avoid using the "hospital" word when Jenelle is admitted. However, 8 days in the hospital was a long time to avoid the subject with Jack. He immediately asked me if her "broken brain was fixed" and I explained that Jenelle was actually sick with the tummy flu, similar to the one he had experienced a few days prior to Jenelle's admission. He was content with that answer, but has asked each night since we've been home who was actually sleeping at home that night. At bedtime on Wednesday night, we had a special treat. I was reading books to Jack, and Brett brought Jenelle in to join us. Brett was being playful with Jenelle and lifted her into the air up to the ceiling. Jenelle smiled and giggled loudly in response! She has never done this before, so Brett continued to do this getting a laugh from her each time (about 10 times in a row!) She seems very happy to be home. Jack asked me if Jenelle could sleep with him that night, so I had to explain that she was safer in her crib. It's nice to finally be home!

I wanted to wait for our trip to UCLA before updating everyone again. We saw Dr. Shields at UCLA yesterday and brought him and his team up to speed on our 8 day adventure at "Spa CHOC." Jenelle pretty much looks like a train wreck with her bruises from lab draws, and her new found "allergy" to tape and latex that we discovered sometime last week upon leaving the PICU. Would you believe it? - Jenelle had only 2 small seizures yesterday - her best in weeks! Jenelle came home with Dilantin added to her regular seizure meds, and Dr. Shields thinks we should continue on a very low dose for the next month to give things time to settle down. Jenelle has not gained a pound in 15 months, and is actually 2 pounds lighter than she was in the fall. Dr. Shields is in favor of her getting a G-tube, and felt we should get that started before putting her back on the Ketogenic Diet again. He said the Diet often can lower her immune system, but definitely was not the cause of her recent illness. So, he loaded us up with prescriptions, and plans to see Jenelle again in early July.

Many of you have asked - Jenelle's meningitis was not contagious because it was bacterial and not viral. She went back to daycare this morning with her brother, and we are to see her pediatrician this afternoon. We have an appointment with the GI doctor next Wednesday, and I imagine we'll get a surgery scheduled for the G-tube placement. She still is not eating solids and I fear she has lost some skills. Dr. Shields suggested she had been through a lot and it may take a while for her appetite to come back fully. We are hoping with time she will eat better, and realize a G-tube will help with nutrition and meds.

For those who have commented on it, yes, my sense of humor is still in tact. How could I survive without it and my sense of sarcasm! It has been a long two weeks, and I am looking forward to a relaxing weekend with the family. Thank you all for your extra prayers these past two weeks. We really appreciate it.

Almost home?

Well, today was another interesting day in the hospital, and Jenelle officially stumped yet another doctor (not that we're trying for a record or anything!) In the early afternoon, the chief resident came in to inform us that they identified the bacteria found in Jenelle's spinal tap. It was some type of "strep" bacteria found in "oral infections" (usually an infected tooth, throat, ear infection and/or sinus infection.) They asked if Jenelle had had dental work recently… uh, no! So, they called in the Infectious Disease Doctor. He did some research and found only 5 reported cases of children with this type of bacterial meningitis, all of which had some type of dental work and/or tooth infection. "I've never seen this before!" he said. Oh joy, we stumped yet another doctor! So, because there were 5 reported cases, he felt compelled to call in a dentist to check to see if Jenelle had a cavity and/or abscess tooth. They warned us that if she needed x-rays, she would need to be "transported" out of the hospital to the dentists office via ambulance. FUN, a field trip out of the hospital for a change!

So we met with Dr. Mungo, a special needs dentist from Huntington Beach around 8:00 this evening (he came to see Jenelle first in the hospital before agreeing that she needed the ambulance ride to his office!) Dr. Mungo said her teeth were fine (and actually complimented me on my brushing of her teeth, which I'm ashamed to say hasn't been too regular - Uncle Jim, please no brushing lectures! ;) He felt she did not need x-rays and that her teeth were fine. He said that some special needs kids have a difficult time with swollen gums due to their seizure meds, and often they need surgery to cut away the gum (apparently Dilantin and Phenobarb are the worse medications that cause this over time.) So for now, he felt the bacteria they found in her spinal fluid may have simply been a contaminant from an outside source. Either way, tomorrow will be the last day of her IV antibiotics, so they are going to complete the course and treat is as meningitis, then hopefully send us home! Better to finish the antibiotics than return here next week!

Jenelle is still not swallowing solids. I met with the dietician today who said Jenelle was definitely failing to thrive and that in her opinion, we should fatten her up before going back on the Ketogenic Diet. She recommended Pedisure and/or Carnation Instant Breakfast. Everyone also agrees that Jenelle will need a G-tube sooner rather than later. She can get the tube which will ensure she is getting ample nutrition, and continue to work with her therapy on swallowing. We have a GI appointment next week, so I'm sure those issues will be addressed.

I've decided that hospital rooms are actually just glorified waiting rooms. You know how you always wait to see a doctor, sometimes over an hour? Well, all you do in a hospital is wait… wait for the resident to look at the results, wait for the doctor to put in the order, wait for the pharmacy to send up the meds. Like I said, "glorified" waiting room, yet fully equipped with TV and pull out bed! I guess I'm slightly loosing my sanity, but hey, at least in our private room I get the TV all to myself!

Thanks for the continued prayers - I'll keep you posted, and hopefully next update will be from home!

Still at CHOC!

We're still at CHOC! It will be a week tomorrow. Dr. Kim (another CHOC Neurologist) saw Jenelle this morning, and after speaking with me, he said he was unaware that Jenelle had an "unresolved" urinary tract infection two weeks ago (remember her allergy to Keflex and our last ER adventure?) Based on this information, Dr. Kim diagnosed Jenelle with bacterial meningitis later in the evening after the culture on the spinal tap was conclusive. Another IV antibiotic was added tonight (she was placed on a different one Sunday) and we will be here at least to Wednesday for her to finish her course of IV antibiotics. Better to be here longer, than to be back again next week! Looks like a mild case of meningitis, and that we caught it in time.

Jenelle is back to her usual self, with exception of her eating, she is still refusing solid food. Part of this could be having a tube down her throat for 4 days, and that she still may not be well. However, today I contacted the Occupational Therapist who ran her "swallow study" a month ago for her assistance, and she is going to take advantage of our being her and see if she can help Jenelle eat more. Looks like a G-tube is indefinite, but it may be a few more weeks.

Other good news is that Jenelle's seizures are under control, and back to what they were before starting the Ketogenic Diet. In the ER, they started IV Dilantin to help keep her seizures at bay, and we are currently weaning that drug and will be off of it by the time we are sent home. With the IV antibiotics she is currently getting, they can lower her seizure threshold, so they are weaning the Dilantin slowly.

Thanks for the continued prayers - I'll continue to keep you posted!

Spinal Tap Results

I went to my office briefly this morning to drop off some work and go through office stuff. On my way in, Brett called to inform me that the doctor came to see Jenelle after I left. Apparently there is a "growth" from the culture of her spinal fluid taken from the spinal tap a few days ago. They need to allow this growth (most likely a contaminant and/or bacteria) to grow more to further figure out what it is, but in the mean time will be treating Jenelle with antibiotics as if it were meningitis. Jenelle is alert again today but not really wanting to eat solids. She is sleeping a lot, which is probably best since she is fighting a major infection. Until she can take her medicine with her food by mouth, we'll be needing the nose tube, and thus will still be in the hospital. They are shooting for Tuesday at the earliest to get her out - we're hoping to make our appointment with Dr. Shields on Thursday (please say a special prayer for that!)

Thanks again for the continued prayers - I'll keep you posted!

Finally out of the PICU!

Finally, Jenelle is out of PICU! It has been a very long week with lots of ups and downs – here are the details. Last Tuesday morning, just after arriving at work, Jenelle’s school called to report that Jenelle had vomited. I was immediately concerned because on the Ketogenic Diet, a meal is like medication, and Jenelle had just received her seizure meds in the morning meal. Grandma Curran picked her up from school, and I met them at Grandmas,where I gave her Diastat (her emergency seizure med) to help her cope without her morning meds. I then took Jenelle home where she napped for 3 hours. After that nap she woke with a fever of 102. I had been on the phone with our Pediatrician and UCLA, and knew we may end up in emergency (we were trying our hardest to avoid it.) I spoke again to UCLA around 4:00, when Jenelle started having another lengthy seizure. UCLA instructed me to go to the ER.

At the ER, they ran the usual blood and urine tests, which strangely enough were normal. However, around 7:30, Jenelle started having many long seizures one after the other, and in front of the ER doctor. We went from thinking we had a slim chance of going home that night to being admitted straight to the PICU. When they transported her to PICU, she had blow by oxygen through her nose, and a crash cart in the bed - just as a “precaution.” That was a scary first for us, and to be quite honest, it was the first time I have ever thought that we may lose her.

The PICU is not a pleasant place, although the nurses and doctors are simply amazing. The resident doctor had been in touch with UCLA, and had instructions on how to keep Jenelle going on the Ketogenic Diet with replacement meals and glucose free IV fluids. All was going well that night, and on Wednesday, Jenelle became really lethargic and non-responsive. After an EEG, we knew we were staying another night in PICU. Thursday morning, things looked great and Jenelle was slightly more alert and holding down some Keto formula and water. She already had a “NG” tube placed through her nose to administer her meds, and we assume the tummy virus and missed meds threw her seizures out of control. Again, we were told that we were heading out of the PICU, until Jenelle started vomiting again. At this point, I consulted with UCLA, and we decided to discontinue the diet until she could get better. We have an appointment with Dr. Shields this coming Thursday, so we will discuss everything that has happened this week and about when we can start the diet again. Because she has already been on it, we will not need to hospitalize her again to start.

So, Friday comes around, and Jenelle is again holding down water and J-ello, and again we get the word that we are heading out of PICU. Just as we found a bed around 5:30 that evening, Jenelle had a seizure lasting almost 6 minutes, followed by many more long ones. So, we are staying in the PICU for another night! Friday was a difficult day as one of the other patients in the PICU passed away. It was an incredibly sad experience to witness, and my heart and prayers go out to the family.

Today was a new day, and instead of vomiting and/or long seizures, Jenelle was more alert, but also “gassy” and uncomfortable to the point of tears. Poor kid can’t get a break! She was able to hold down some milk today and was finally released to the “Neuro” ward on the 5th floor around 6:30. Our goals for tomorrow are to get her off the IV fluids, and onto some solids. If she can manage the solids and maintain her usual seizure baseline, we “may” get to come home tomorrow. Realistically though, it is looking like Monday.

Thank you again for the continued prayers. Please pray that she can start holding down some solid food so we can go home! I’ll keep you posted!

P.S. - Thanks to many of you who have sended responses to my updates. With the slow dial up at the hospital, I have been limited on responding, but please know that they all mean so very much and help keep me going! And thanks to all of you who haven't responded but I know are thinking of us too! We feel your love and support and it means so very much!