Tuesday, June 28, 2005

Jenelle's new gas tank (ie: G-tube)!  Posted by Hello

Thought I'd share a photo of what Jenelle's new G-tube looks like. The "tube" you see sticking out is temporary, and will be replaced in 6 more weeks with a "button" that will be flush with Jenelle's tummy. It doesn't seem to bother her, and is compared to a "body piercing" in a way. Weird, huh?

Friday, June 24, 2005

We're home - without answers!

We left the hospital yesterday evening around 6:00 p.m. As I was dressing Jenelle in her regular clothes so we could leave, she started laughing and giggling as if to say "Ha, I'm finally going home - told ya I wasn't sick!" After getting home late and working on 4 loads of laundry (how that piles up when we aren't home I'll never know!) it was much too late for me to put my mind into a meaningful update. I'm still tired today- so I'll be brief. The CT results were "normal" and ruled out appendix, G-tube dislocation and, I didn't realize it with my last update, but colitis as well. Without more bloody stools, the GI doctor didn't feel a colonoscopy was warranted. Bacically, GI is now pointing us back to Neuro saying her symptoms are "neurological" and of course Neuro wants GI to look further into it - either way we are home and Jenelle is still cranky and is still having diaharria. Someday it would be really nice if we could get a simple, "This is what's wrong, and this is what you need to do to stop it!" from our doctors… maybe someday.

Prior to leaving, they switched her formula to a "pre-digested" brand called Peptamen Jr., and started her on a "pro-biotic" to help the bacteria in her tummy. She was all smiles after taking that, except for a brief period of inconsolable crying after her bath last night. Also, she still suffers from insomnia and didn't fall asleep until almost midnight. So, our two possible answers are that she had something viral (which I doubt because she hasn't been at school or daycare long enough to get sick!) or she was not tolerating the new formula. Basically, Jenelle stumps the doctors once more.

Brett and I are thinking we should start looking into food allergies. The very good news regarding that end is that we have a close family friend who just happens to be the best pediatric allergist in Southern California! We will follow up with GI Doctor and Dr. Patel on Monday and will be requesting a referral to see the allergist, Dr. Gillman, as soon as possible! Ironically, Dr. Gillman is the one who pulled strings for us to get an early Neuro appointment back when Jenelle was only 6 months old, so I guess we've gone full circle now. The only "specialists" Jenelle isn't seeing these days include an Oncologist and Cardiologist (thankfully!)

The good news is that her seizures are under control and we aren't seeing any. Also she has somehow gained a pound since her G-tube was started, so that is good as well. Thanks for thinking of us this week and for the special prayers. I'll update next week after our follow up appointments.

P.S. - Brett said you know you’re a regular at the Emergency Room when you have them on your "online bill pay" to cover all our co-payments. Lets hope we can eventually have a quiet summer and leave the nice people at the ER alone!

Thursday, June 23, 2005

Still in the hospital

We are still in the hospital. Jenelle was doing well this morning and has only had a few seizures all day. They checked her for Roto Virus, but that was negative. There is a new Neuro here at CHOC, Dr. Peng, and we spoke earlier today. She agreed with me that Jenelle’s seizures are the least of her problems, that they are most likely out of control due to this fever, sickness thing. After getting most of our "recent" history (meningitis and 9 ER trips in two months), she felt the seizures could be "masking" the real problem, which is most likely GI. So far, I like her thinking! She said they would give Ativan if the seizures got out of control again, but would leave the rest of our stay to the GI department.

Jenelle is fine and is acting like she has been prior to this admission (sometimes irritable, fever, diaharria, etc.) If they wanted to send us home I'm sure they could, but I’d rather not have to return to the ER again.

Later in the afternoon, and especially after meals, Jenelle became very irritable. All day her heart rate has been elevated, and her apnea monitor has been sending off alarms. She is too agitated for our nurse to even get vital signs. We met with our GI later in the afternoon and discussed our options. She wanted to get an x-ray of her G-tube site to make sure it was still in place, and thought we also needed a CT scan of her GI tract. Something is causing her serious pain, especially after eating.
They eventually did a CT scan of her belly with “contrast” and we are still waiting on results. They hope to rule out appendix, intestinal issues, and mis-placed G-tube. We are still waiting on those results, which is why we are still here. If the CT Scan is normal, the other possibility is Colitis. From what I know, Colitis is when a person does not respond well to something in their diet. It can cause stomach/intestinal cramping, vomiting and/or diaharria, blood in the stools, low grade fever and of course, irritability. The symptoms fit perfectly, especially since Jenelle started supplement formula when we left the hospital last month (after the meningitis) and just a week before these symptoms started to rear their ugly head.

At this point, we do not want to go home without some answer and/or comfort for our girl. Hopefully we’ll get that answer tomorrow, and at the very least, we can switch formula or something to make her better.

Jack is doing well for those that have asked. Did I mention our “fish emergency” from Monday night just before leaving for our Angels game? With my just getting home from work, and us frantically trying to get out the door in 10 minutes to drop off the kids, Brett quietly suggested I “save the remaining fish” before we left. For some weird reason, Jack’s fish tank was polluted, and 4 of our 7 fish were belly up. I fished out the three we had left, and put them into one of my big measuring cups and left everything for after the game. Jack noticed the tank, and said “Mommy, Rainbow Fish No. 4 is dead!” The funny thing in that comment is that we had “Rainbow Fish No. 1, 2, 3, 4, & 5” (neons) and Jack automatically assumed “the dead one” was Rainbow Fish No. 4! Brett gave me a break from hospital duty this evening and I got to spend time with Jack. We went to the pet store to buy some “replacement fish”, and I decided to get a new Beta fish to keep in our Kitchen. Jack has named him “Azul!”

Thanks for the continued prayers! I’ll keep you posted.

Tuesday, June 21, 2005

Back in the hospital!

Well, Jenelle is back in the hospital! Yesterday she had a low grade fever, so I called Dr. Patel since it hasn’t been a week since the G-tube was placed. He of course told me to go to the ER for blood work and other tests. I called Brett with the news and neither of us wanted to go. We had a babysitter and Angels tickets and really needed a break. So we decided to check her before leaving for the game, and after. She was fine when we got home around 10:00 and fell asleep earlier than usual. This morning she has a slight, low grade fever of 99.9, so we decided not to go to the ER. However, when I was changing her G-Tube bandage, I noticed blood, so I decided we needed to go.

Jenelle had already been given Motrin less than a half an hour before we arrived at the ER, and was running a fever of 101. They saw her immediately, started IV fluids and ran blood and urine tests. Of course, the test results were fine – no sign of infection. They checked the G-tube site and said the blood I saw was something called “granulation”, and apparently completely normal. The site looked fine and was not infected. So, we were hoping to go home, until unfortunately, Jenelle started seizing. As you know from my last update, we haven’t seen seizures in a while. She had quite a few and needed Diastat, her emergency seizure med. After that, the Doctor felt she needed to be admitted for observation.

So, here we are – our favorite place in the world – NOT! The good news is that because her problem is most likely viral, we have a private room. The bad news is that she has continued to have seizures and had to be given Ativan (another emergency seizure med) before coming up to her room. She was doing well, but started to have seizures again. So, not sure how long we’ll be here, but I’ll update when I can! Please pray we can go home tomorrow!

Monday, June 20, 2005

Jenelle's "Gas Tank"

When we entered the elevator at CHOC last Wednesday to go to the place where Jenelle was to have surgery, Brett and I looked at each other and said, "I hate this place!" Clearly, there wasn't enough time to pass between this stay and our last less than a month ago when Jenelle was there for 8 days. Thankfully, the only "highlight" of our stay this time was the earthquake we felt on Thursday before going home.

We got home from the hospital Thursday evening, and I started to feel very overwhelmed. One good thing about Jenelle being on a feeding tube is that insurance pays for Pedisure (which is so expensive, it should be a crime!) Meds sure have been a breeze as well! Late Thursday evening, the "home health" people delivered our IV Pump, IV stand and case of Pedisure along with IV supplies and paperwork. A nurse showed up at 8:00 pm and stayed until 10:00 pm showing me how to work our new toys! Jenelle will be getting 2 cans of Pedisure slowly pumped into her feeding tube over 10 hours during the night. This is in addition to our normal feedings by mouth during the day and should supplement her daily nutrition adequately.

When Jack got home on Thursday, I sat down with him and explained that Jenelle had surgery and was now going to have a "feeding tube" sticking out of her belly. After explaining what it was for and what it looked like and that he should never, ever touch it, I asked if he wanted to see it. He said yes, so we went into Jenelle's room where she was in her crib and I pulled up her shirt to show him the tube. Jack looked at the tube, then said, "Mommy, she has a gas tank now!" (he is right in more ways that one!) And that was it - he was relatively un-phased by the whole thing!

Jenelle was quite irritable all weekend - which is understandable. I swore to the doctor and nurses that if anyone was going to "pull out" her tube by accident, it was going to be Jack. Well, guess who almost pulled it out the first night? Yep, me! I was putting Jenelle back into her crib after a diaper change and the tube got caught between me and the crib rail. She screamed and cried, I screamed and cried, and if anything, I think I just made the incision area a bit more sore than it was, and luckily the tube did not come out! The great news is that other than the few seizures we saw after surgery, Jenelle has not had any. Her behavior has been different since we got home; she is not sleeping well at all, and still cries inconsolably at times - the party queen of the night has returned, but she's a cranky queen! Sometimes it is as if she just wanted to be held by Mommy - which while I love it, it can be exhausting 4 days in a row (which further demonstrates why I prefer to be a working Mom!) At the worst, she could be demonstrating typical two year old behavior - which is wonderful and frustrating at the same time! The insomnia is not fun, and I have a call into Dr. Patel and Dr. Shields to see if they have any ideas.

Other than that - we are hanging in there! We are tired and frustrated, but we're hanging in there! Thanks for the continued prayers -I'll keep you posted! Oh yes, and Happy Belated Father's Day to all the Dads out there!

Wednesday, June 15, 2005

Jenelle gets her G-Tube!

Jenelle’s G-Tube placement went well this morning. After we were admitted, they started right away to hook up an IV. After 7 attempts, they finally got one started in her foot. I was beginning to worry that this was a bad sign. Regardless of the problems with the IV, the “procedure” was quick and they said Jenelle woke up laughing! They took a biopsy of her esophagus, and felt the cells were undamaged. We were scheduled for a PH study; however, the doctor felt it was not necessary after seeing the inside.

We were in our room less than an hour after the surgery, and Jenelle cried a bit at first, but has been doing well ever since. I think the crying was most likely her coming off the anesthesia. She has had some seizures, but that is to be expected, and none have been very long.

Her “tube” is placed about an inch under her sternum – higher than I originally thought it would be. Seeing this “foreign object” protruding from my beautiful baby’s belly was difficult at first, but I’m starting to get used to looking at it. The “tube” will be exposed for two months allowing the site time to heal. After two months, Jenelle will receive a “Mickey” button, that will seal off the site and be flush with her skin (and of course, barely noticeable.) This whole process reminds me of that cow at the UC Davis School of Veterinary Medicine. You may have heard of it - the one with a hole in its stomach that they use to show visiting school kids how a cow’s four stomachs digest food? That cow is most likely no longer alive as I recall hearing about it when I was in elementary school. Anyway, like that cow, we now have a direct rout to Jenelle’s tummy, and we’ll never cry again at meal time – we hope!

If all continues to go well, we should be home tomorrow. Tomorrow should be full of “instructions” for us to learn how to feed Jenelle. Who knew nutrition could be so scientific! Our roommate tonight is absolutely wonderful – a sweet 13 year old girl doing a PH study. They said they are “frequent fliers at CHOC” like we are.

Thanks for the continued prayers – I’ll keep you posted!

Monday, June 13, 2005

A quiet weekend for once...

Well, we made it through a weekend without a trip to the ER (knock on wood!) The only casualty this weekend was our television as it decided to break early Sunday morning as I was putting in a DVD for Jack. If you want the full blown details on how the TV died, just ask Jack - his recount of the story is hysterical and includes some spectacular sound effects!

Many of you have told me you get worried when there are no updates, and then you worry also when there are too many updates! I just can't please everyone can I? I must admit, a lack of emails can be concerning if we are in the hospital, but if Jenelle is doing well it usually means we are relaxing and enjoying the down time! I wish we could all be at ease with Jenelle's stability, but as we know with Jenelle, she likes to surprise us from time to time. So, no news "usually" means good news - unless of course we're in the hospital, which would be bad news! See - no way to please everyone! That said, onto the details of this update…

Jenelle is going in for surgery this Wednesday at 9:00 a.m. for the placement of her G-Tube. Honestly I have very mixed emotions about this procedure. I realize the benefit of it and the need, but yet feel it is a step back. Jenelle will stay overnight for observation, and for a reflux study. Hopefully this will be our shortest stay at CHOC this year. Last week, Jenelle was eating well (which made me question the need for the tube) however over the weekend she decided to stop eating again. She is so skinny right now, Brett and I fear we might break a bone if we life her too tightly. So, it will be a good thing to get the tube, and will definitely take the stress out of meal time (and hopefully save some tears for both Mommy & Jenelle as mealtime often leads to tears these days.)

Jenelle is still laughing and smiling from time to time - that has been a true delight! She is also "scooting" around quite a bit and sometimes I'll put her in front of the TV, to find her 5 minutes later in the kitchen (a length of about 10 feet). I hope she continues to "scoot" after the G-tube is in place. Unfortunately, she still cries inconsolably at times, and we still do not know the cause. The GI doctor has approval for a colonoscopy, but wanted it done prior to the G-tube placement (which means we'd have missed work all week!) We decided to wait to see if it is necessary after her hospital stay this Wednesday.

So, please keep us in your special prayers for Wednesday - that surgery is uneventful! I'll try to update when I can.

Tuesday, June 07, 2005

Kidney ultra sound and VCUG test

Jenelle had an ultra sound of her kidneys yesterday morning, along with a "VCUG" test/ A "VCUG" is where they look at the bladder with an x-ray after inserting some dye via catheter to make sure urine from the bladder is not backing into the kidneys. The radiologist told me after the tests that all looked normal, and Dr. Patel left me a message yesterday with the same information.

We managed to make our appointment with Dr. Shields at UCLA, and it was probably the quickest trip we've had yet! Dr. Shields wanted to personally see Jenelle because he too felt if she was to have problems from her recent meningitis, it would be now. He said any complications after meningitis could cause her to lose significant skills permanently, so he had to make sure. He got a first hand view of Jenelle's crying episodes, and felt she was definitely feeling pain from something - either a GI issue and/or some type of headache. He did not feel the crying episode was seizure related. He mentioned that it may be a good idea to check her for Glaucoma because children often experience pain with the high eye pressures associated with Glaucoma. I told him that might not be such a far stretch because I was diagnosed with Glaucoma when I was 22 (and have lost some vision because of it) and my Father has had Glaucoma for sometime. Glaucoma is hereditary, though I've never felt pain when my pressures were high. Yesterday there was more spots of blood in her stool. I have a call into our GI Doctor to see if they can't do a work up to see if she has an upper GI ulcer or something that could be causing the bleeding. Right now, we are just waiting and playing the insurance waiting game for authorizations!

Jenelle is now getting daily Zantac and Tylenol every 6 hours to see if it will help her pain. Her seizure meds remain the same (Topamax and Felbatol) and she is doing much better "movement wise" without the Dilantin. Ironically, her seizures have been very well controlled. She still has periods of inconsolable crying, but not as many as before, so the Tylenol must be helping. Thanks for the continued prayers - I'll keep you posted!

Sunday, June 05, 2005

And yet two more trips to the ER!

Well, what is worse than going to the Emergency Room on the Friday night before Memorial Day Weekend? Try going to the ER twice in one day a week later! I’m beginning to wonder if Jenelle thinks the ER is her second home. We certainly have our own private doctor and nurse there who definitely remember us each time, which makes it easier. Earlier this week I spoke to Dr. Shields because Jenelle would not stop moving – it was as if she was in pain and/or irritable about something. I took a short video clip of it and emailed it to Dr. Shields, and upon viewing the video, suggested we stop the Dilantin, as the side effects can cause involuntary movements like the ones she was making. So Wednesday was her last day of Dilantin, then she started with periods of hysterical and painful crying where we could not console her. No fun.

Then, late Thursday night, Jenelle had blood in her stool. Not just superficial blood like from constipation and/or hemorrhoids, this was dark stool with lots of blood. On top of that surprise, she has been so not normal lately – crying one minute, to laughing hysterically the next. I knew we had no choice but go to the ER, but just in case I called the doctor on call. She told me even if a “normal, non-special needs” child had blood in the diaper, it was an automatic trip to the ER. So, I got there around 11:30 p.m. (Brett stayed home with Jack) and the doctor did some blood work and started an IV. He suspected her “electrolytes were off” and said the blood work may tell them something if she was bleeding. I brought the diaper with me and everyone agreed it was a lot of blood in the stool. Unfortunately, they couldn’t get a sample from the diaper I brought in. At first the ER doctor said she was going to be admitted, but later around 5:00 a.m., he told me her electrolytes and blood work were normal so there was no use admitting her just to get her to poop for a sample! So, we left around 5:30, and slept most of the morning. Of course, Jenelle was still irritable and crying off and on all day – at this point she was refusing food. Later that evening around 4:00, we still did not have a poop sample, so I called Dr. Patel. When he called me back and said he was shocked they released her and instructed me to return to the ER and insist on a full work up with ultra sound and x-ray, and to insist she get admitted until we figured out the problem.

So, I packed a bag expecting a long weekend stay at CHOC, and made it back to the ER to find our favorite nurse on her “second shift!” In case anyone goes as frequently as we do – ask for Rachel, she’s the best! This time they ran an x-ray which showed little stool and no significant bleeding. Then, the doctor we had that morning saw me in the ER and was surprised to see me back, so he suggested we order a head CT to see if there was fluid on her brain. If her meningitis from two weeks ago had not resolved, now is when we’d see problems. The CT Technician was confused and asked why we came in for “rectal bleeding” and we were getting a head CT! Of course that came back normal. Finally we insisted that we weren’t leaving without her pooping, so they gave her an enema, and they got their sample. No blood this time! So we were sent home with a diagnosis of “altered mental status” due to her bouts of crying. Fortunately, I had left messages for Dr. Shields with information about all that was going on, and he wants to see Jenelle on Monday afternoon. If it is a new “mental status” then I suppose seeing him is the best answer!

As I’ve typed this, Jenelle has been crying hysterically the whole time. You cannot imagine how helpless we feel. I hope we figure out something soon. Oh yes, tomorrow morning, Jenelle is having her Kidney ultra sound and Kidney Reflux test. Should be an extra busy day. Her G-tube surgery is scheduled for June 15, and I’m hoping to bump that up. Please keep us in your prayers that we can resolve whatever is causing her so much pain. I’ll keep you posted...