New Traditions

December through to January is a busy time for Gracie and for that matter all of us! Gracie's family day (the anniversary of when she was placed in our arms in China) is December 12th, then we have Christmas, and her birthday on January 3rd. There are all of her big occassions for the year. This year, I want to start new traditions that do not involve hospitals!!

Last year for family day and for Christmas, Gracie was in the hospital. For Family Day, she was in with pneumonia and we discovered she was allergic to sulpha drugs (of course, after having received two doses of them!) We totally skipped over celebrating her day. For Christmas, Grace had a seizure in the early afternoon. She had excellent timing as she got to open all of her presents from Santa before needing to leave the house and prior to us putting the dinner in the oven! We spent the remainder of Christmas in the ER. We celebrated her birthday with no problems - but as we said that was her last birthday cake for a while as she was starting the ketogenic diet the next week.

This year, we need to celebrate family day in a new way - the traditional Chinese meal will have to change as she can't eat many traditional Chinese dishes - too many carbs! We did purchase gifts for both girls from China to give them on their family day. We will be able to give that to Grace and maybe go out for crab legs (or as Grace calls them, 'crap'.)

For Christmas, we are looking forward to just simply staying at home this year! We promised the staffs at the local ER and at CHOP that we would not be seeing them until Easter. We gave each other our holiday greetings before Gracie left the hospital last week!

For Gracie's birthday, we are trying to figure out something that does not involve food. Gracie knows about birthday cake and candles. Tom has been working on some recipies for cheesecake so that we can try a keto-cheescake with candles for her. It has to be something that we can serve to everyone as Gracie catches on right away if she gets something different! I think the cake and candles will be the key thing - and of course the singing :-)

The pictures are of recent hair cuts and a picture of Rita and Gracie with Rita's classroom project, Kingston. Kingston came to stay for two nights in the middle of November.

Thanks for checking in!

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.

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!

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!

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!

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 :-)