Monday, November 30, 2009

Back Home

Gracie did her miraculous turn-around thing again and we are back home tonight. We were given the option to take her home or keep her longer for observation. We opted to take her home and just keep an eye on her here. She was drinking just fine so dehydration was not an issue. She was pretty much back to baseline (aka what she was like prior to the seizure). The only lingering issue was her balance. In the past, this returns but it takes a bit longer. The doctors were actually concerned about what germs she could pick up while still in the hospital. They felt she would be better off at home if we were comfortable taking her home. She is currently tucked in and sleeping safe and sound at home.

This was a rough ordeal for Rita this time. Rita likes to get to see her in the hospital and see for herself that Gracie is alright. We didn't have her do that this time. First of all, if she got to the hospital right away, I'm not sure it would have reassured her any. Secondly, Rita would be confined to the room Gracie was in rather than get to explore the play rooms (this is often a perk she enjoys while Gracie is in the hospital). Thirdly, there is no need to expose Rita to more possible germs. Her school was closed today and tomorrow due to a water main break so Rita had a lot of time to think about Gracie today. Rita also caught her seizure and I think it scared her - she did amazingly well, but it scared her nonetheless. Tonight, Rita was clingly and emotionally needy. I think it will be good for her to be home tomorrow with Gracie and a parent. It should help her to settle back down.

Thank you for checking in. Please keep praying for Gracie and Rita. Thank you!

Back in the hospital

Gracie is back in the hospital tonight. She has pneumonia - again.

She had a seizure this afternoon while outside playing with Rita and two friends. Apparently, Grace felt it coming on and just sat down in the grass. She then laid down and started to shake. Rita came running in the house yelling that Grace was laying down just staring up at the sky and she was shaking. I grabbed the Diastat, the medicine to stop the seizure, and ran out while Tom just ran. We took her inside and gave her the medicine - the seizure did not react. After 5 minutes we gave her another dose and called for the ambulance. Gracie's seizure lasted about 25 minutes total and she did not wake up afterwards. The doctor and medical team at the local ER were quite concerned. When Tom and I got to grace in the yard, her head was on a piece of wood (for landscaping). We don't know if she hit her head or not. She had a CT scan and everything was fine - although it did confirm sinus congestion. She had a chest x-ray and it confirmed pneumonia - in both lungs.

Apparently there was some concern that she was in septic shock again. The transport plan to move from the local hospital to CHOP called for her to go to the PICU. By the time the transport team from CHOP arrived to get her, Grace had finally woken up a bit - enough to alleviate some of the fears the doctors had. She was taken to 7-West - Neurology. As she arrived at the room, she finally started to speak again - my sign that things will be alright. She is being treated for pneumonia and there are plans to start respitory therapy in the morning.

Thanks for checking in on us and please take a moment to say a quick prayer for Gracie's healing.

Thursday, November 19, 2009

All's Well That Ends Well

Just as I though things were starting to settle back down into some semblance of normal, more chaos hit! I was finishing up lunch when my cell phone rang. It was Rita's teacher calling to tell me that her school was being evacuated and someone needed to come pick her up right away. Apparently, there was a gas leak in the vacant building next door. I called Tom to see what he was up to and to see if he was able to pick Rita up. Tom asked if I had the message from day care about Gracie; she was having a low sugar episode and they were worried she was sick. I said I would pick up Gracie after I got Rita.

I didn't think about the fact that the entire area of Rita's school would be bedlam and streets would be shut down! They had evacuated the students to the gymnasium of the high school across the street - which was also being evacuated as best I could tell. There were emergency workers and vehicles everywhere - police, fire and ambulances. Despite the chaos, they were very well organized and were keeping very close track of every student. Rita was brought out and the minute she saw me she burst into tears. I guess she held it together and then just lost it. It took a little while to convince her that this was all just safety precautions and that everything would be alright. She was very worried about all of the ambulances sitting around. Rita was also upset that she had to leave her back pack in her classroom. At six years old, it was just a bit too much for her.

Rita and I got settled and managed to get out of the area. We got to Gracie's day care just at the end of nap time. We gathered up her things and picked her up off her nap mat to carry out. I could see just how nervous they all were about Gracie - the medicine to stop a seizure and a pair of rubber gloves were right on her mat and the teacher was laying down right next to her. Day care gets an A+ for preparedness! Gracie seemed to have several things going on - she wasn't eating and appeared to have a low sugar episode - hence the shakiness. They gave her a few cc's of apple juice and then got her to eat some peanut butter and some turkey. This seemed to have solve that problem. She appeared warm to them so they took her temp. She was just at the 100 degree mark. Somewhere in the midst of all of this (and Gracie's version of the story varies with each retelling), she was either pushed or hit. She had a black eye and a cut on her eye. In addition, she has a chesty sounding cough.

I got both kids home and we had a nice snuggle in front of the TV for a bit. Rita seemed to have calmed down and was fine and Gracie woke up the rest of the way and wanted to eat! We met Tom and picked up Rita's new glasses (see the photos!) and then we took Grace to see the doctor. Notice that Gracie is also now wearing glasses; albiet sunglasses. She wants to be just like Rita!

The doctor was satisified that Gracie's lungs remain clear. She was concered that the congestion had gotten into her lungs but that does not seem to be the case - just a sniffle and a cough. She had no elevated temp or fevers in the doctors office. Gracie had eaten - pigged out actually - so there was no point in testing her blood sugars. Basically, Gracie is fine. She was in full imp mode in the doctor's office - so much so the doctor laughed and said a child with that much energy was not feeling too sick!

As the saying goes, all's well that end well!

Wednesday, November 11, 2009

Interesting Flu Study

One interesting note about Gracie's recent hospitalization to share. While we were in the ER, someone came in to ask if we wanted to participate in a study. They are tracking the level of a certain protein in the blood stream and following up on the patient outcome to see if the level of this protein is a marker for the severity of the resultant flu and the eventual patient outcome. It required exactly one drop of Gracie's blood. They were able to take that drop of blood from the blood in the lines when they took Gracie's blood for other blood work - basically blood that had no other use and was about to be disposed of.

The protein in question is the Lactate protein. The theory is that the higher this level is in the blood stream the more severe the flu will be. If I remember correctly, it is something about the body's reaction to the flu virus, produces this protein. Thus the more severe the flu; the more of this protein that will be produced. It sounds like an interesting theory.

CHOP is the regional children's hospital handling the majority of the flu cases during this pandemic. They are seeing many, many children a day with the flu. I was impressed that someone was ready with this study. This may be one very good thing that comes out of all the negatives of this flu. We were happy to be able to participate. This may actually be something that helps Grace out in a few years if she gets the flu again. It would be really handy to know at the onset how severe things are going to get.

Thanks for checking back in on us!

Tuesday, November 10, 2009

Gracie is home!

It is with great pleasure that I report we are all sleeping under the same roof tonight! Gracie was discharged late this afternoon.

Gracie was definatively diagnosed with the H1N1 virus. The doctors wanted to make sure that there was a cause related to her increased seizure activity and the high fevers assocaited with the H1N1 virus are clearly the cause. Her lungs remain clear so there is no respiratory factor for Grace. In my mind this was one of the most worrisome symptoms as this was the factor cited with so many of the childhood deaths assocatied with this flu. Thankfully, Gracie was not hit with this complication.

Gracie is generally miserable and cranky. I would expect this from any sick three-year old. She is getting headaches from the flu and an upset stomach from the TamiFlu and the anti-seizure sedative. It is not plesant for her - but not life threatening either. She can be comforted and wants to snuggle up and be carried about. It is nice to be able to do something to ease her.

Gracie was not drinking enough and she would not be released until she was taking sufficient fluids on her own. Last night, I was in the kitchen area and noticed the infant bottles. I took one in to her and filled it with her 'juice' (keto version) and she lit up. She quickly sucked down a full bottle - all two ounces of it! That is how we got her to drink enough fluid on her own. She went to bed tonight with her little bottle and a small smile.

To complicate matters, Grace was discharged while I was off with Rita to her eye doctor appointment. Rita started having problems with blurry vision from time to time. She got checked out at the pediatrician and then recommended for follow-up with the eye doctor. Well, Rita is getting glasses. She was very pleased about that. Anyhow, while she was getting her exam done and picking out her new frames, Tom was calling to have us come pick he and Gracie up at the hospital. Rita and I finished up and raced down to get them. Gracie needed some prescriptions filled but we missed the pharmacy at the hospital - they closed about 15 minutes before we all arrived. We took her prescriptions to the local pharmacy but they don't have any TamiFlu - let alone at the dose she needs. We managed with the other scripts. So we need to run back down to the hospital in the morning to get the TamiFlu prescription filled. She needs the next dose by 10:00 AM. The drug store said flu medicines are very hard to get and to keep stocked. Fortunately, we can get them at CHOP.

Thanks for checking in on us!

Monday, November 09, 2009

Hangin' with our friends at CHOP

Gracie is still here at CHOP. Once they got her fever down, it seems to be staying down. She is on TamiFlu for the flu; IV antibiotics for the bacterial infection; and a sedative to prevent additional seizures. Basically, she is under control. She is very tired and not very interested in food or drink. She is on IV fluids again tonight since she is not drinking enough.

Grace remembered the child life specialists here and perked up this afternoon to paint. She was so pleased to get to paint. It was great to see her wake up and play. The IV is in her right hand (and she is right-handed) so she had to paint with her left hand. Despite that, she thoroughly enjoyed painting!

This is the ketogenic diet initiation week at CHOP. It is ironic because the last time Gracie was inpatient, it was initiation week as well. Last time, Tom spoke to the other parents. If we stay, he may put in another cameo :-)

The Flu has struck

Well, Gracie's illness turns out to be the flu. We were giving her Motrin and Tylenol every few hours - the maximum allowed doses. She was still running a fever - up and down. With one of the spikes today, it triggered another seizure. We did not call 911 and rush her to the hospital as we were not sure what they would do for her. We called her pediatrician and left a message. When she called back the message was, these symptoms sound like the flu that is going around. Grace needs to be at CHOP. Are you comfortable taking her or shall we send an ambulance? (We drove on our own - no need to wait for an ambulance - I am faster :-) )

We expected very long lines at CHOP but there were very few people in the ER waiting room when we got there. Grace was triaged rather quickly and then seen rather quickly as well. It was quickly determined that she had the flu. The big question was how her fever was so high when she was on full doses of Tylenol and Motrin, back to back. It turns out that she may have a secondary bacterial infection. We were given the option to take her home after a dose of IV antibiotics or to leave her there for observation and monitoring. We chose to have her stay there at least for the night. For me, this was too much of a reminder of what we went through in March with the pneumonia that turned into septic shock - we don't need a repeat of that. Grace got a room in 7-West - the Neurology floor. It was a good thing because the first thing they did was order the sedative that will help prevent additional seizures while she battles these fevers.

Grace is in good hands. We hope that she bounces back quickly and does not experience any additional seizures.

Sunday, November 08, 2009

"Where Rita?"

That was the sweetest thing I heard for a long time. It set my mind at ease in a huge way.

Gracie had a seizure Friday night. It started out as a tonic-clonic (full-body seizure) and then morphed into an absence seizure. It was a relatively short seizure by Gracie's standards - only about 12 minutes - but it was not her normal seizure. Her breathing was shallow and she seemed to be fighting to come out of the seizure. We had already called for an ambulance and they were on their way when she came out of the seizure. Grace was out of the seizure enough to try to pull her arms away as they tried to check her vitals and run an IV. Typically, when she is that alert, she will also tell them NO as she swats at them. I usually take that as my sign that she will be alright - when she is alert enough to fight.

The folks at the ER checked her out and tried several times to get her to respond but she could not get any words out - she could only grunt. It looked like she was trying to talk but nothing was coming out for her. Several times they tried to rouse her and get her to respond but she was not very responsive. I must admit that I was starting to get a bit worried. After we were in the ER for about 2 hours, I picked her up so we could change her and change the bed. She was fairly limp. And then out of nowhere, she perked up, picked up her head, looked at me and then looked at Tom and said, 'Where Rita?'. Grace was going to be OK. Rita was asleep in the chair curled up in a pile of coats and jackets.

We stayed a bit longer in the ER to make sure that Grace was back to normal, or as they call it, baseline. In no time at all was Grace up and asking for something to drink and something to eat. We were all back home shortly thereafter.

Grace has no fever Friday night. As sometimes happens, the seizure is a warning that the illness is coming. By Saturday morning, Grace was running a fever and was congested. She was tired, cranky and miserable but she was going to be alright! We will watch this cold to make sure it doesn't get much worse. We have been pumping her full of Tylenol and Motrin to keep the fevers from spiking. Fortunately, it seems to be a cold that has invaded our house and not the flu - something else we are quite grateful about!!

Thursday, November 05, 2009


I am a bit behind on putting out a Halloween update. The girls had Halloween dress-up parties at their respective schools, dance classes and, of course, our neighborhood trick-or-treating. We were very nervous about how Halloween and the ketogenic diet would mix. We debated even letting Grace participate in these activites where carbohydrates play a central role. In the end, we worked out that she could particpate but that she would need to get rid of the candy and treats. For the school party and the dance class party, Gracie happily gave her bags of treats to Rita and then went to the dollar store and picked out some non-food treats there. This worked great and she was very pleased.

Halloween night did not work as well. I think Grace really felt she had earned the treats that night. Grace tends to be afraid of a lot of things and people sitting on their doorsteps dressed up in scary costumes are high on her list of things to avoid. However, she mustered up her courage and followed Rita and some friends up to even the scary houses. She every so sweetly held out her big orange pumpkin and said, 'Trick-or-treat'. She even remembered to say thank you for the treats. She did not want to part with them when we got home. We took her to the dollar store immediately after arriving home and she was not interested. She just wanted her candy. Her request seemed so reasonable but we had to say no. This was one of the times when the diet tested our resolve, as parents, to keep her on it.

We had a lovely surprise from one very considerate neighbor. When we got to their house, they had a special treat for Gracie - a bag of cashews. Gracie's favorite nut. That was one treat that she did not have to give away or throw out. Thank you Chris, Lew and Angela!!