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Monday, February 04, 2008

Back to normal

[February 4, 2008, email to family and friends]

Hi all -

Thought you’d appreciate a brief final update on Roxie. She’s been home for just over two weeks now, and in that time, she has really gotten her full spirit back. She was weaned off all her medications last week, and today we were allowed to stop the supplementary nutrition she was getting nightly through the TPN line. Roxie is happy, strong, and both virus-free and seizure-free ... we love it, and we feel very lucky.

Thanks so much to you all for your constant support.

Love,
Phelps, Kate, Roxie & McRae

Journal entry

It’s hard to believe how bad things seemed a month ago. Waking up to your daughter shaking uncontrollably, eyelids blinking repeatedly, eyes staring right through you. Spending all day and night at her side, her in a medically-induced coma, day after day expecting things to get better and when they do, they turn south again the next day. Having to see your daughter “bagged” and given manual breaths while they figured out how to get her breathing on her own again. It changed me. (How could it NOT change a parent?) I’ve never been as focused on something in my entire life. It FORCED me to focus. Gave me clarity.

Slow down brother. Slow down.

Home sweet home


[January 23, 2008, email to friends and family]

Dear Friends -

Presbyterian released Roxie on Saturday and within a couple hours of being home, Roxie ate her first meal in nearly three weeks. Needless to say, we were ecstatic. She continues to improve and even was moving around like her old self on the floor this afternoon.

We’re weaning Roxie off some of the sedatives she was on for so long in the hospital, and, with the help of a home health agency that’s on call, she’s getting the necessary calories and nutrition through a TPN line (an IV-type line that stays in her arm). Much progress is being made, and we expect to be off all sedatives by Tuesday, and for her to start eating much more regularly at that point (she’s only eating 20-25% of her typical intake right now).

Most importantly, she’s just happier to be home. That goes for all of us, including McRae who has been a great help and loving presence for Roxie despite the frustration of having her family gone for so long and not really understanding it all.

Thanks to all of you for your constant support. We couldn’t have made it through this difficult time without you.

With much love,

Phelps, Kate, Roxie, & McRae

Light spirits on the Peds floor

[January 18, 2008, email to friends and family]

Hi all -

I wanted to let you know that we received some great news from the doctor yesterday. After 17 days at Presbyterian Hospital, it sounds like today or tomorrow should be our last. Needless to say, the mood in Roxie’s room late yesterday afternoon was light-hearted!

Roxie is doing really well, with nice-sounding lungs and seizure control. That said, it has been one week now since she has been off the ventilator, and she still hasn’t taken food or drink orally. Our best guess is simply because she’s stubborn just like any Sprinkle, but we’ve also been told by the doctors and nurses that this isn’t too unusual.

Typically the hospital likes patients to eat/drink on their own before releasing them, but given Roxie’s heightened sensory issues, they agreed that she may be more likely to eat/drink at home in her comfort zone. So ... yesterday they put a central line into her that allows her to get nutrients/fluids through it until she eats/drinks. Along with a nurse who will stop by the house periodically, we will administer all Roxie’s medicines orally and all her nutrition through this central line, that is, until she begins to regularly eat/drink on her own. We were pretty amazed that this was even an option, and we are confident this will get Roxie where she needs to be faster.

From our entire extended family, thank you for your persistent thoughts and prayers, food and cards. This has been, and continues to be, a spiritual and humbling journey, and we will never forget your support.

Love,
Phelps, Kate, Roxie, & McRae

Food from friends is glorious

[January 16, 2008, email from my sister Ellen to me re: dinners]

Looking forward to seeing y'all in a little while.

Wednesday Night (Jan. 17th): Spears
Thursday Night (Jan. 18th): Debbie Rubenstein
Friday Night (Jan. 19th): Ann McCain
Saturday Night (Jan. 20th): Anthony & Samara Foxx
Sunday Night (Jan. 21st): Amedios
Monday Night (Jan. 22nd): Jennifer Hawthorne
Tuesday Night (Jan. 23rd): Cate Martin

Stage two: uncertainties abound


[January 13, 2008, email from Ellen to friends and family]

Hi all,

Roxie is continuing to improve and is resting on the main pediatric floor at Presbyterian. Even though she is getting better, she is feeling miserable and is going through Detox, which is very hard on her and Phelps & Kate of course. They expect that will continue to get easier on her in the next couple of days. They had a scare today when they thought Roxie may be having seizures, but a recent EEG looked good. They are going to do a repeat EEG tomorrow morning to make sure she isn’t have seizures. Assuming this EEG is good, she should be on her way to going home. Please continue to keep them all in your thoughts and prayers. The reality of a child that has been under heavy sedation, pain medicine and with breathing tubes for 8 days, is difficult, since the recovery from so much trauma is hard on anyone, especially Roxie, who has such sensory issues and low muscle tone. But, as we have all seen, Roxie is tough and a fighter, and will hopefully be home soon. Thanks again (I know I have said this so much) to everyone. Please keep the support coming, you are so much of what makes it possible for Phelps and Kate to get through this.

Ellen

Dinner train ... unbelievable

[January 12, 2008, email from my sister Ellen to me re: dinners]

Hey Phelps,

So sorry that Roxie feels so bad. I know it must be so hard to watch her feeling so miserable and not be able to do anything about it. Hang in there, you and Kate are unbelievable parents! Below are the people bringing meals for this week. Four more people have asked to do a meal but I am waiting for confirmation back on the dates following these...I will let you know.

Love you,
Ellen

Saturday Night (Jan. 13th): Joan Rizzo
Sunday Night (Jan. 14th): Allison Hertzler
Monday Night (Jan. 15th): Amedios
Tuesday Night (Jan. 16th): Lance Kinerk
Wednesday Night (Jan. 17th): Spears
Thursday Night (Jan. 18th): Debbie Rubestein

Almir & Amra bringing something Saturday for snacks.
Jonathan tried to bring dinner, told him no.
Chris & Denise Pineno tried to bring dinner, told them no.

Thinking we're out the door!

[January 11, 2008, email to family and friends]

Dearest Friends,

Roxie had her breathing tube (and two other tubes) pulled out this morning and is doing great! She’s breathing well on her own and is relaxing as she comes off all the sedatives. This was a huge step toward being well enough to go home, and we are so relieved. I truly cannot thank you all enough for your thoughts and prayers and gifts and food and everything else. It has been amazing and humbling to experience, and we love you all.

We’ll keep you updated once we know more, but we expect to be in the ICU for another couple days and then probably a day on the main floor before heading home.

Thank you.

Phelps, Kate, Roxie, & McRae

The day I got religion

[January 8, 2008, email from my sister Ellen to friends and family]

Hi all,

I just wanted to get another update out to all of you. Roxie had a tough morning today. They had a really hard time getting her oxygen levels where they needed to be and had to manually give her breaths for about 1 1/2 hours. Her heart rate and other vitals went bad during this time and it was a very scary 1 1/2 hours for Phelps & Kate. Roxie is now stable and has been since the incident was over. The doctors made the decision to switch her breathing tubes to infant tubes (so they are smaller) and these seem to be working. I don’t understand the specifics but they increased the pressure in the tubes but decreased the volume. Because of all the stress to her body this morning, they have spent the afternoon trying to allow her to rest. Therefore, along with the sedatives and pain medicine, she is also on a paralytic drip. They also added a direct line into her arteries to take a constant blood pressure reading so they can keep a better eye on everything. Roxie’s blood readings (alkaline vs. acid levels) are improving and the CO2 levels are also improving. As you can imagine, this was a very frustrating setback, but the doctors and nurses do believe she has turned a corner and is getting better. Her Chest Xrays continue to improve and she has much less secretions coming out of her lungs (they said today that the fluids coming out is now clear, not yellow anymore), so her body is doing a great job of fighting off the RSV and pneumonia. The hard part is figuring out how best to get her breathing on her own. As you all know, Roxie is a special patient because the combination of her low muscle tone and high sensory issues. When they decrease sedation, she is just so sensitive to everything that she gets agitated...so they are moving slowly on this.

They do not know the cause of the crash Roxie experienced today, but one of the nurses believes the most likely cause was a mucus plug in her breathing tube. We don’t know for sure and just pray that it doesn’t happen again. The goals over the next few days are to get Roxie off the breathing tube, maintain seizure control and decrease sedation. All of this will have to occur before they can leave the hospital.

It looks like they will likely be in the hospital for a while longer. If any of you want to do a meal for them and haven’t had a chance yet, please respond to this email. No pressure, just know this email list has grown and wanted to let everyone have an opportunity. We have dinners covered through Sunday (other than Saturday night).

Again, thank you to all of you for your thoughts, prayers, food, visits, emails and phone calls. Your friendship and support of the entire family is more helpful than you can know.

Ellen

A much-needed good day

[January 7, 2008, email to family and friends]

What a difference a day makes.

After a tough Saturday, on Sunday morning Roxie rallied big time. For the past 24+ hours, she’s been steadily improving and her lungs and levels are looking good. I want to thank you all for your thoughts, prayers, and well-wishes. It has made a huge difference to our entire family.

The latest expectation is that we can get Roxie out of the ICU in 2-3 days and then out onto the pediatric floor for a couple days after that. We hope to have her back home by the weekend. The stay is longer than a typical child would experience mainly due to her low muscle tone and sensory issues; everything just takes a little bit longer. Roxie has handled everything like a champ, and so has her sister, who sends messages (and various items!) to Roxie every day wishing her well.

Thanks all. We are a lucky bunch.

Phelps, Kate, Roxie, & McRae

Life in the PICU

[January 4, 2008, email to family and friends]

Our Dear Friends,

First of all, thank you all so much for your prayers and well-wishes. I can’t tell you how much it has meant to Kate and me.

Ellen related to many of you the really great news we got yesterday from the neurologist ... the types of seizures Roxie most likely had on Wednesday were not the kind that would affect her brain development. That was a huge relief.

Roxie’s condition remains stable and she’s still heavily sedated and on a couple of anti-epileptic drugs while her body fights off the RSV and pneumonia. Our goal is to get her to the point where she can breathe and cough up stuff on her own and have her sedation lowered. (They’ve had her on the breathing tube to help her lungs rest while she’s fighting off the crud and so that they can suction out the secretions that build up in there.) We tried to remove the tube today, but she wasn’t quite ready, and we’re going to try again tomorrow. Right now, she’s resting really well.

Once she’s completely kicked this thing’s butt, we will be able to head home ... they are telling us it’ll likely be mid-week. Thanks again to all of you. We are extremely lucky to have such family and friends.

Warmly,

Phelps & Kate

Caring friends

[January 4, 2008 email from my sister Ellen to me re: dinners]

Phelps,

Here is the current meal schedule. Everyone knows that y'all would prefer no company during the hours of 6:30 to 8 PM while you are home with McRae, so they will all plan on dropping off either before then or dropping and running. Jenny Beacham is bringing over some snacks sometime this weekend, I told her I thought some one would be there most of the time so to take stuff by the house whenever.

Tonight (Friday): Robb and Tammie Beatty
Saturday Night: Worrells
Sunday Night: Saldarinis
Monday Night: Nofsingers
Tuesday Night: Prices
Wednesday Night: Maddreys

I will let you know as more people call and email me back. You have amazing friends! They are all so giving and care so much about y'all...cool!

Love you!
Ellen

Follow-up email …

Additions to that:
Thursday: Clifton and Michelle
Following Sunday: Olins

Hope you are doing okay. I love you.

No long-term effects from seizures

[January 4, 2008, email from my sister Ellen to friends and family]

Hi all,

Not much to update since Phelps' last email except to say that the neurologist did confirm the type of seizures Roxie was having were "partial seizures". I don't know much about what that means other than they are harder to get stopped than general seizures but that they almost never cause lasting effects to the brain once they are stopped. Therefore, no one expects that once we get Roxie well from the RSV there will be any long term regression or delays from the seizures. So, that is great news. Roxie has been stable since Wednesday afternoon and is continuing to strengthen. The nurses and doctors have been fantastic, Phelps & Kate are very happy with
her care.

All that being said, Roxie is still expected to remain in the ICU for another couple of days and likely in the hospital for awhile after that. They are basically kicked out of the ICU from 6:45 to 8 PM in the evenings, so they are coming home to spend some time with McRae before she goes to bed and get a chance to have dinner. So, I know a lot of you have asked about meals and if you would like, I know those would be much appreciated. Starting tonight, through the next 7 days would be great for dinners. Please let me know if there is a night you would like to do. It would be great if you could have the meals to their home by 6:15 that evening, since they really would prefer to have down time with McRae once they are home, since they are seeing her so infrequently right now.

Thanks to all of you, if you would prefer to support them through thoughts, prayers, bringing snack foods (fruit, muffins, etc) or in any other way, that would be wonderful too. Please don't feel any pressure to bring a meal if that doesn't work for your family.

Phelps & Kate are so lucky to have friends like all of you and all of your support has meant more to them than you can know!

Ellen

RSV triggers breakthrough seizures in Roxie

[January 2, 2008, email to friends and family]

Hey all –

Some of you know about Roxie’s seizure episodes this morning, but others don’t. I thought you’d all want to know the situation and/or appreciate an update.

Roxie is currently stable and sleeping soundly beside me in Presbyterian’s Pediatric ICU. She experienced a couple of 20-30 minute prolonged convulsive seizures this morning, one at home that triggered a 911 call and the other in the ER a couple hours later. We have had her seizures under control most of today and she is heavily sedated to let her rest.

We found out that she has RSV (Respiratory Syncytial Virus) and her body’s response to fighting it likely triggered the seizures. For some reason, Roxie was showing no signs of RSV (coughing, sneezing, runny nose, much like a cold), but she may have just started down that path last night which, again, may have led to the seizure activity.

As you know, Roxie has not had a clinical (visible) seizure in about 2 1/2 years. The type of seizures Roxie had this morning were different from any others she’s experienced and their prolonged duration are classified as “status epilepticus.” This can be extremely dangerous if not treated but we think in Roxie’s case that we got them under control quickly enough that there will be no long term effects.

Right now, our goal is to get the RSV (and resulting pneumonia) gone, and a that point we will be better able to tell what kind of seizure control she has. Until then, we are keeping her heavily sedated, with a breathing tube, and seizure-control drugs being given intravenously. We expect to be here at least three more days; she is safe and in very good hands.

Please know that we have lots of family support. I’ll either send an update myself or ask my sister to in the next couple of days. Roxie’s a tough nut, and I feel certain that she’s going to be just fine. Thanks to all of you for your thoughts and prayers.

Warmly,
Phelps