Weary and Ready to Be Home

I was SO hoping that I would be reporting that we were home finally.  But, alas, we are not home.  Still at the hospital.  It's Wednesday night.  We are wrapping up the 16th day in the hospital.

Clinically speaking, Peyton is ready to go home, so that's great.  Now, that said, she is having some issues holding her oxygen level up where it should be, so that's a concern.  This may be her new normal though.  On the other side of things, the doctors are having to meet as a team (which they seem to regularly), but they are having to coordinate with other specialists in-house as well as talking with the geneticist in Boston on certain issues. 

I did not speak to the doctor myself this evening, but the nurse said that they want to be sure I know CPR and that we have everything set up to be at home.  There needs to be a plan in place for how to deal with these "apnea events" (just a polite way to say that she stops breathing).  I kind of equate them to having seizures.  No...I'm not saying she's HAVING seizures.  I'm drawing a comparison here.  When she had the first major seizures, we went by ambulance to the ER.  When she stopped breathing at home the first time (a minute or so), we went by ambulance to the ER.  She has had a couple events in the hospital, so we were where we needed to be.  When she continued to have seizures at home, we had to monitor how long they were and what her mental status was after the seizure ended.  Only once have we had to use the emergency meds for seizures that are too long.  So I'm wondering - when she stops breathing at home, at what point do we now call 911?  If she comes around quickly do we just assess her and if she's "normal", stay home?  Or do we have to book it to the ER every time?  How are we supposed to handle these events?  And like seizures, there's no telling when (or even IF) there will be another event.  Do we need an apnea monitor at home now?  We have a pulse ox monitor, but it doesn't measure her respiration rate.  Do we need to keep her on the pulse ox all the time now?  These are just some of the questions we have that we need answers to before we leave here.

So, as you can see, while we may be physically ready to be out of here, it isn't as simple as that.

Say a few prayers please.  Mostly for her that she can get home, but also for me.  I'm pretty weary.  I'm hanging in because of the hope that we'll soon be home, but I had hoped it might be today and, while I totally appreciate where we are in the process right now, the fact that we did not get to leave did something to me.

And I just want to thank the people who have been so good to us.  I had some people from church come up to visit (separate visits) and a couple others as well.  I really appreciate their thoughtfulness - from the visit itself to the books, snacks and so on that they brought.  And to those who have helped and who have offered help in the outside world, I am so thankful for you as well!  I really truly appreciate it.  It all means more than you know.  I'm so grateful to you!

Holding Pattern

Yesterday was a relatively quiet day. Peyton did not have a good night's sleep at all on Thursday night. She woke up a little cranky, but if I'm being honest, I truly felt like she was a little better and that perhaps we were heading in the right direction.  

Peyton, having not had the best night's sleep, fell asleep around 1:30pm. I thought that was fine - she probably needed a nap after the night's sleep she had. She basically fell asleep by the time the respiratory therapist was finished with her. When the RT came back 3 or so hours later, Peyton was still asleep. Her treatments involve lifting her up, putting a vest on her, hooking her up to a machine that inflates the vest and it vibrates at a pretty good force in order to help loosen up any junk in her lungs. She also gets a number of nebulizer treatments as well as inhalers. She slept right through that, perhaps only opening her eyes briefly once or twice. The next RT came in around 9:00pm or so. Same scenario. She'd pretty much been asleep since 1:30pm. But I figured she'd wake up completely at this point because she was still on the nasal canula for oxygen and she needed to be put on her bipap mask. Her canula is taped to her cheeks. That would definitely wake her up! Well, it did...briefly. And by the time I had the mask on her and started up the machine, she was pretty well out of it again. 

Sometime after midnight, while she was on bipap, her oxygen levels dropped and kept dropping to about 80-81%. I watched for a moment and the nurse came in since she had seen that on the monitors. I hooked up supplemental oxygen to her bipap machine. We shouldn't normally have to do this because the bipap keeps her levels where they should be...most of the time. I got the oxygen going at 1 liter and the same exact thing happened again. I bumped it up to 2 liters of oxygen. She did well on that amount. In the meantime, her heart rate was up in the 140s and even up to around 150. Even when she was sound asleep, it was in the mid 120s. Mid 120s is usually her normal "awake" rate when she's well. Because of all of this, the nurse called the RT to come in and take a look and she paged the doctor. All of this was going on between 1 and 2 am this morning. I think the doctor was in sometime shortly after 2. Of course, she was sleeping soundly and seemingly peacefully. There wasn't an explanation. 

Speaking of no explanations.... We still have no idea what is going on with Peyton. This is our 12th day in the hospital and there's no answers. Let me reiterate that this is not the fault of the doctors or hospital. They are doing everything they can. Trust me on that! I find no fault in anything they've done. Earlier in the week, I decided to email Peyton's geneticist in Boston to let him know what was going on. Not because I'm doubting anyone's abilities here but because I know that we're all sitting here scratching our heads. I thought maybe, just maybe he might have some ideas. As it happens, he is at a conference on metabolic diseases. He thought it interesting given everything going on with Peyton right now. We exchanged a couple emails and he then sent me one which I passed on to Peyton's team here. It had instructions to call him while he's at this conference. The doctors rounded this morning and they have apparently been in touch with him during the night via email and phone. He has some specific tests that he would like run. Per his request, they checked her ammonia levels in her blood. It came back as 80, which is a bit high. He was looking for something over 100 I guess. That said, they were going to get in touch with him about that since it was close. They may do a 24 hour urine test (she'd have to be catheterized for that). I think he wants her to begin IV copper supplementation, but getting that is not as simple as getting iron supplements, so they have to talk to pharmacy here. There's also some sort of steroid that he was talking about putting her on. Since there are a variety of tests he also wants her to have, the doctors here want to find out if those all need to be done before starting this steroid. Starting the steroid isn't the problem...it may just need to wait until after these tests. The bigger issue is the copper. We'll see what happens. 

Right now we're just in a holding pattern. Peyton's definitely more alert but her heart rate is higher than normal and she's not back to her base line. She is a mystery and she is leaving everyone scratching their heads. Keep on praying for wisdom and guidance for her doctors. This is as frustrating for them as it is for us. I wrote a post on my blog in the wee hours of the morning this morning. It's a little about Peyton and about community. You can read that here:

http://fontenblog.blogspot.com/2012/10/peyton-iphones-and-building-community.html 

And also just a little side note, I wanted to share that I had written a blog post last month as a "Compassion Blogger" - that is, I will from time to time write blog posts to promote the efforts of Compassion International in sponsoring children around the world, lifting them out of poverty in Jesus' name. September was "Blog Month", which means they utilized Compassion bloggers to the extreme to push to get 3,108 children sponsored in the month of September. They got 3,159 sponsored!! I wrote posts during the month towards this effort. One of my posts was selected as a "Best of Blog Month" post and was featured on their blog. You can read that here:

http://blog.compassion.com/dear-god-on-compassion-and-gratefulness/ 

So, we're just hanging tight here and we'll wait to hear what all the doctors come up with. I'll keep you posted.

Remember Last Month?

Today was going along just fine, although Peyton was pretty irritable and her heart rate was a bit higher.  The doctors made their rounds and we were sharing all our concerns about her.  They left the room.  The nurse came along.  He was in the doorway at the cart {they have carts in the hall with their computers and some meds/supplies are also locked in there}.  I lifted Peyton up into a sitting position so I could make adjustments so she'd be more comfortable.  Almost immediately she kind of threw her head back and was staring off into nowhere.  Then things seemed all to familiar.  Remember when she stopped breathing last month for about a minute??  It was happening AGAIN.  I called to the nurse who called down to the doctor who was still in the hall but up a bit.  Everyone came in.  They didn't call a MET but someone asked if they should.  The episode lasted about 30 seconds this time.  I was able to grab for the suction while the nurse got her oxygen going.  The doctor was just seconds behind coming into the room, but she was pretty well through it when she came in.  Her heart rate was elevated, although it has been all day.

More discussions ensued about what's going on with Peyton.  They still don't know.  More discussions ensued about what to do with Peyton.  She had been taken off one of four antibiotics that she's on, but they began discussing putting her back on that.  They were going to stop a second one, and the orders to discontinue had actually been put in.  They cancelled those orders and have continued.  She's on 3 antibiotics that I know of for sure.  Not sure about the one that was d/c'd if that will come back or not.

I described what happened to the doctor and stated it was exactly like the episode last month, only not as long.  It is possible, as I thought last month, that it could be seizure-related.  They are going to talk to neurology and get their take on it.  She may need an EEG.

The pulmonary doctor was consulted after this and this was him finding out that she was even in the hospital.  He was not impressed.  I don't blame him.  Actually, as far as I was concerned, he had been contacted because I heard someone say that they were going to - either in the ER on Tuesday or in her room Tuesday night or Wednesday morning before she had the episode that sent her to the PICU.  Anyway, he's on the case now and his suggestion was for her to wear her bipap 24 hours a day to help keep her airway open in the event this happens again.

Because of what happened, it was decided that Peyton would be moved to the PICU stepdown unit.  So we are not where she was on Wednesday {thank God}, but she is being more closely observed here.  Not that she wasn't before...but there's more constant monitoring in the stepdown unit.  She's on the full monitor rather than just the pulse ox monitor which only measures oxygen and heart rate.

Nothing had been mentioned yet about going home, but now that we're over here, it's definitely going to mean a longer stay.  I don't know what is going on with Peyton, but I believe there are multiple issues.  If anyone from the show "Mystery Diagnosis" wants to weigh in, I'd be more than happy for them to!!

As always, prayers are appreciated!  Please keep Moira in your prayers too.  This stay is really weighing on her.  She was unable to go somewhere today because of Peyton being in the hospital so she was upset about that.  She's worried about Peyton.  Seeing Peyton in the PICU, even if only briefly, was scary for her.  It was scary for us!!  

I'll keep you posted!

911 and A Trip to the ER

Last night Peyton was not having anything to do with falling asleep. She rolled around in her crib for a while. She was laying quietly shortly before 11pm when I heard her then make weird noise. I first thought she needed suctioned. I looked at her and something was wrong. I took a moment to watch her. I wasn't sure if she was about to have a seizure. It would be her first in just under 3 years if it was. She had her head tilted back. Her chest was sucking in like I have never seen before. She was moving strangely as this was happening. She was neither inhaling nor exhaling. She was not breathing. Her oxygen was I. The 70% area but within seconds it hit 27%. Ron was not home and I was with her alone. I began rubbing on her chest to stimulate her as her face turned grey and lips blue. Her head rolled limply to the side. I will be perfectly honest - I thought she was gone at one point. I tried to call Ron but hung up and called 911. It is hard to explain what is going on when you are in tears and can hardly breathe yourself. I know they were just wanting me to focus but I wanted to slap the person on the phone a couple times. I just needed her to listen to me. She probably needed something else from me. Peyton started to come around. I needed Ron. I knew he was on his way home, but with Moira in the house too, I needed him ASAP. My laptop was up and while explaining to 911 how to get to an apartment that everyone has problems finding, I put out a message on facebook for someone to please call Ron because I was calling 911. My sincere gratitude to whoever reached him. My sincere apologies for possibly freaking out a couple hundred facebook friends including family who otherwise would not have been finding out about Peyton this way! 

She was stable when EMS arrived. Ron made it home moments before so I told him to stay home so we didn't have to wake up Moira and drag her to the ER too. I walked out with the SEVEN EMS and firefighters who responded. She remained stable on the way to the hospital and still is. She was admitted though.

I have absolutely no idea what happened to Peyton last night. I don't know if we ever will. But she is stable and is finally getting some sleep after being up all night.

Did I mention we are in the middle of moving right now?? Last time we moved, Peyton wound up in the hospital though it was not nearly so dramatic. 

I am not sure how long she will be in. I was meaning to write a post on how things are going on the genetics front. I will save that for another day, but I am trying to coordinate a couple lab tests that a couple docs as long as we are here. One is a 24 hour urine test. The only way that can be done is if she is catheterized and I can't imagine doing that at home!

So...after a very scary event, Peyton seems fine but we just don't know what happened. Prayers are much appreciated. I will update later.