Meeting with Dr. Cooper

Today I had an afternoon meeting with Dr. Cooper, Haven's Pediatrician. We meet about every 6 weeks to review Haven, where she is and was. We go over any notes that I have and get them in order for the other doctors Haven visits.

We reviewed the notes from Cardiology and Pulmonary and what the doctors had written in their reports. I got my copies for my files. She said I could probably copy their upper notes to take with me to any new doctors so we do not have to go through it all over and over again! Good idea.

We're still waiting for anything from Cardiology. I mailed the halter back to them on Monday so I'm not sure when they would've received it.

We have a meeting with Endo on May 4th so we reviewed some medical info from Susannah's mom and thought it would be a good idea to mention to our Endo. Susannah just recovered from surgery for Cushing's Syndrome. Which Haven has been tested for a few times. She copied me on an email she sent to my favorite mom in Europe and a few areas caught my attention!

We are doing well on the Pulse Ox machine. We know how to use it and I am confident in the results now - after talking with Pulmonary earlier this week. I keep a detailed log of her stats throughout each night.

I discussed Chicago with Dr. Cooper today and it really helped to talk to her as she has no bias to go or not go. Kris and I discussed it tonight and I believe we have come to a decision. Kris will discuss it with Oncology tomorrow and then we will confirm what we are going to do. We have been thinking hard on this decision and I have been working with our case manager.

I found some of Haven's old records yesterday while digging through boxes. Some reason I feel like I already said this but don't remember. Anyway, we have her blood records from July 2006 and two of her MRI reports from 2007. So I will scan that in and email to all of her doctors.

Until the next doctor appointment tomorrow - that is today's update!

Love to all
M

So many people to thank

and I've never met them.

This banner was made for Haven as she was featured today on another blog! Thank you so much for featuring our baby girl!

I have to say the mother that featured Haven is amazing to me. She is part of a family of 11!!!! She has 6 boys and 3 girls.

Refusing naps

Haven is doing very well on the pulse ox every night. We have lots of log books now...I keep the pulse ox one next to her machine by her bed. Then we have one for blood pressure and then I have one I keep my journal notes in. Haven is still refusing day time naps due to having to be on the machine - but she will crack one of these days and I will get some readings during the day.

I did find some paperwork from my hospital visits when she was a baby. Well...a baby meaning 2 1/2 years old. Had lots of blood work that was done then. I was digging for pictures and found it all. So I'll send that over to Oncology to review. Gives them something from July 2006 when we started this. I also found 2 of the MRI reports that I can send as well. So that is good.

I spoke with our case worker tonight about Haven going to Chicago. We still need to discuss with Oncology before making our final decision.

We made soap tonight.....and I turned blue. My hands are bright blue from the dye for the soap. I squeezed the bottle and the blue exploded...so that was nice! I should look nice and smurfy tomorrow.

Mason and Haven text each other now. It's cute but I think both Julie and I start to go a bit nutty because they text very slow and we have to write it out and then they change their mind. Haven wants to fill up the entire screen with smiley faces. It's cute, believe me. Mason also called to talk to me tonight. We discussed the important things like American Idol and dinner.

Hope everyone is having a great Wednesday! :) Love to all

Spare time.....

So I had about 20 minutes of spare time tonight!! Whoo hooo....I figured out how to do a slide show. You can see it to the right. I made a quick one to see if it worked and it did.

Haven's blood pressure was up pretty high (from her normal readings) today. I'm not sure what that is - could be the chemo or could be anything. We also have a couple of infected toes again. So we did a super soak and then put peroxide on them. Then I have to put her Altabax lotion all over them. But to be honest, I'd rather do this than have surgery on the toes. Pulmonary is concerned about Haven getting more anesthesia than necessary and most likely that will be highly noted in her files now - more than before.

I have been working on Haven's site. I'm going to update her story a bit more in the Haven Kristina section to the right. I have also put her slide show over there. It's in the best order I can do for being half asleep with one eye open! :)

Anyway, I just want to thank all the wonderful moms that write to me, comment on Haven's blog, or send me a message through facebook. I am very happy to have started this blog - 1 for Haven and 2 for the ability to help moms connect with each other.

I have a close friend mom hanging out in Europe who emailed to get info on another mom here in the states. I happened to have her info and knew about her daughter and was able to connect them. This is what I hoped would happen and it's great that everyone gives info to each other about their kids that may just help one of us in our quest for a treatment or even a proper diagnosis!

Love to all......I'm going to sleep now!

Thank you everyone for your help!

Thank you everyone for helping me with the pulse ox machine. I have been bugging Julie for 3 days now about the machine and types of pulse ox probes she uses. I have received quite a few emails about the machines and heart rate related information.

I talked to Pulmonary today and they also answered a few of my questions about the machine. She actually thought the doctor showed us how to use while in his office. I found out that Haven needs to be on the monitor every time she sleeps - not just at night. So this means naps and Haven wasn't happy about that. So she refused to take a nap today and stayed awake all day so she wouldn't have to be on the machine. I also have to make sure she has a constant pulse (no skips) for a full minute before taking the actual reading or it won't be correct.

Thank you Dawn (in the comments) I did find the number on the side of the machine and Pulmonary also gave it to me today. I was a bit concerned when they had to call insurance to find out why I only received 5 probes. But - again - as it was not explained to me - we need to use the same probe and change out weekly. So the 5 probes are actually a full month supply. I have to agree with Dawn - the beeps comfort me but also keep me awake. I know Julie says they mute their heart beats too and will hear it if it alarms.

I also want to thank Maureen - I received a huge box today with 4 pads and 3 packages of diapers. Haven loved the feel of the new diapers. She said they didn't hurt her belly or bother her scar. She was pretty excited about them!!! Thank you guys. She was also excited to have the new pads. We've been using puppy training pads - and although they work somewhat they have this horrible smell that really makes you feel a bit ucky. I always have to spray them with something. The smell is to attract the puppy to go to the pad.....but it smells horrible and I don't think it's good for Haven to sleep on them.

Pulse Ox Machine Question????

While watching her oxygen I am able to watch Haven's heart rate. Now the machine is hooked up perfect and we have excellent readings - nothing is malfunctioning. Haven is laying perfectly still.....

My question to anyone else on Pulse Ox: Haven's heart rate seems skips sometimes. Sometimes it does a double click really fast and sometimes it seems to skip a beat. Does your machine do this? Is something messing up even though all lights are green and no alarms are signaling?

Sometimes it goes...da...da..da..da..da..dada..da..da.........da..da..da..da..dada..da..da..da..da..da..da.

I guess I just have to wait for Cardiology to get back to me on the over night monitor they put on her. I have been reading up on Tachycardia to understand it, as this is what she went to Cardiology for. Usually with ROHHAD a child will develop Bradycardia (slow heart rate) - I have not seen reports on Tachycardia.

Ugggg....I really just want to be able to sleep not stay half conscious!

Bed Pads and Laundry

So...when you are lucky to have a ROHHAD child you get to do A LOT of laundry. I probably average 10 loads of laundry every week. I probably have more than 20 towels in the laundry room at one time. Our children get dehydrated so fast having ROHHAD that they have to keep drinking. I think Haven drinks a couple of gallons of water a day and her pee is still yellow and she still tests as dehydrated. A ROHHAD child can pee 2 to 3 liters of fluid at night.

So imagine waking up 2 or 3 times a night to change the sheets and pillow cases....sometimes a comforter. And it's not only wet - it's dripping! I have plastic on her mattress, plastic over her pillows, puppy training pads (because stores don't sell bad pads for kids), and towels in the bed to soak it all up. Still some nights everything is SOAKED! We've had to do complete showers in the middle of the night.

Well I have been checking out the Grayson bed pads for adults. They can hold up to 1600 cc of fluid but they are expensive. Maureen, Sophia's mom, is awesome. She sent me a few of these bed pads to check out and some adult diapers to try. I have been hesitant about buying adult diapers because I wasn't sure if they would fit her right. So this will be perfect to try out. I know some of the mom's double diaper.

Also - if you haven't checked out our links to the ----> right...........these are randomly updated with events, news, and our friends. Sophia's school is having a fundraiser for her and I would love it if you checked out her website and read about her fundraiser. Anything helps and they are only asking for $5!!! Check it out!!

Thank you Maureen for the help with the diapers and bed pads.....can you believe I'm actually saying "I'm excited to try bed pads and diapers!"......what our life has become!

Sleep well tonight.....

Exhausted

Well....I am exhausted. Friday was a long night with checking Haven's stats on the O2 monitor. Then last night I did a check at 9pm, 10pm, 11pm, 12am, 1am and then finally fell asleep to have some crazy weird dreams. Woke up at 3am and checked her readings again. Heart rate was around 110 and oxygen at 94. Then Haven got me up at 4:30am because the alarm was going off on the machine. At that point I realized I never heard the alarm which is a good test and means if there is an emergency I won't hear the alarm.

So we're gonna have to work on that tonight. I believe it alarmed because I'm trying to spare the use of the bands. We only got 5 with the machine so I have to find out how I'm supposed to get more. I really wish someone would've explained something to us about the machine and who we call for supplies.

This week should be a calm week. Haven will be in Oncology on Friday. We'll be discussing Chicago and our thoughts and feelings regarding that. We're still discussing how we feel about it and are still not sure what we want to do. There is a lot of work to do with insurance. I spoke with our case worker on Friday and there are a lot of hoops to jump through to find out if it's even a consideration. That will be discovered throughout the week.

We hope everyone had a wonderful weekend. Love to all.

1st night on the pulse ox machine

Yesterday we received Haven's pulse ox machine. It is similar to the hospital portable machines. Needless to say, it came to the door and no one showed us how to use it. So when I came home I figured we'd better practice before we got to tired.

After about 30 minutes of playing with it I called Julie and begged for her help! Hey, she's a pro right! There was a moment of concern and laughter as I checked my reading. My oxygen was coming in at 75 and my heart rate (sitting on the floor) was at 165. So we were certain that I would be heading to the ER as I should be passing out! :)

Haven's machine is the "band aid" type that wrap around the fingers or toes. So my dad came over and we decided to check his readings. Wha La! He figured it out. I kept reading the 50 page manual that came with it and realized something important.

"Cold fingers or toes may cause a false reading"......well there is only one thing left to do. The hot foot! All of her other fingers and toes are always cold. The hot foot worked!!!!

So last night I took her readings through out the night as instructed. The Cardiologist wants to see her down in the 80's while sleeping and we want to keep her oxygen around 95. Here is what we had:

10pm: O2 levels: 98 and heart rate: 97 (excellent)
11pm: O2 levels: 94 and heart rate 120 (she was beginning to talk in her sleep too)
12am: O2 levels: 97 and heart rate 122 (still only slightly talking)
3am: O2 levels: 98 and heart rate: 162 (we were really talking in our sleep at this point)
7:15am: O2 levels: 97 and heart rate: 133 (we were awake and ready to get up)

So am I happy that I know what's going on with her at night? YES. I am happy with the oxygen levels - it will be interesting to watch and compare each night. I am not happy with the heart rate while sleeping. But I can say that I felt more comforted knowing she was hooked up and would alarm if anything was crazy.

We are also checking her blood pressure twice a day. We seem to run normal in the morning and high at night. This is what I have been noticing lately. Will be good to discuss with Oncology next week.

Well it is about 75 degrees today. Haven and I are making care packages for our friends and then we're going to head to the post office and to Walmart to load up on diapers and pads. Dad is out biking today....gotta soak up the sun before the Seattle rains hit again next week.

Has anyone ever used the Grayson washable bed pads? I found some on the internet - they are $9.00 each pad but I will buy some if it actually works.

Love to all - have a great weekend.

Pulmonary, Oncology, Cardiology - Oh My!

Well we made it through. The past two days have been filled with lots of doctors and lots of talking!

PULMONARY:

We were very happy with this appointment. I really like our doctor. He listened to everything, explained the difference between obstructive sleep apnea vs. central hypoventilation and how they see it in a sleep study, he had talked to Oncology before meeting with us so he already knew about Haven and pulled up her records while we were in there. It was great. We spent over an hour with him.

A few areas discussed:

Haven's breathing and where she is right now: he noted that her sleep studies were pretty good right now and that we would continue to monitor her closely for any changes. He said her last sleep study showed her highest CO2 level at 49 and when she starts to pass 50 is where the concern would be. We have a sleep study scheduled for August 15th and a follow up appointment with him on July 23rd.

He did say he didn't expect Haven would suddenly stop breathing in the next month or even the next 6 months but then reminded us that he can never say that for certainty because we don't know how ROHHAD acts in every child. At most, he said she would probably only need to go on a bi-pap machine in the next 6 months but didn't think we should worry about that yet.

He mentioned bringing Neurology in now to monitor possible seizure activity during her next sleep study. Doesn't mean she is going to have a seizure but Haven has a history and since this hasn't been monitored in over a year he would like another record of her brain in that department.

He is a bit concerned with her sleep walking and talking. More for her safety than anything plus we were sure to explain to him that although her sleep walking drives us crazy and doesn't let us sleep - it also comforts us because if she's screaming and talking we know she's breathing.

He ordered a pulse oximeter for Haven to use at night while sleeping. They said it would be set to alarm if she reaches 94....I am sure we will hear many alarms as Haven is usually around 95-96 and a little drop will cause an alarm. Kris received a call tonight about the delivery! I did briefly discuss her sleep walking and machines but he was not worried. We will have to spot check her stats - we'll have different times at night that we will have to record them.

We discussed her ABG results that were done while under anesthesia. He is almost discounting them because the readings would be altered by the intubation and oxygen given to her. So we will have to have an ABG test while awake. We did not do this today - as he wanted Haven to meet him first without pokes and it hurts a lot.

He is highly recommending us to go to Chicago to meet with Dr. Weese-Mayer. He said he has talked to her and discussed Haven. Oncology has also talked with her about Haven. He is concerned that there could be something they are missing and wants to have a full evaluation done by Dr. Weese-Mayer and then get the results back here. He also would like to have Haven's full studies in the research paperwork to help other children with ROHHAD. I have emailed the team at RUSH (thank you Julie for all the paperwork). We'll discuss this with Oncology next week.

We discussed Haven's allergy to Ketamine. He absolutely doesn't believe it's specifically Ketamine related. He told us that a ROHHAD episode (Respiratory Failure) can easily be triggered by ANY anesthesia. Haven must be required to be intubated without question at any procedure done. He told us to make sure when she does have anesthesia that we require them to monitor her CO2 levels while giving her oxygen. He said CO2 levels can rise dangerously if not monitored at the same time in a ROHHAD child. We have agreed to have her intubated on every anesthesia procedure due to her seizure activities and respiratory failure a few times while under anesthesia.

The funniest thing we heard: he said he bets that Haven can stay under water for a couple of minutes and have no problem at all. She lacks the function of panic that would tell her she needs to get to the surface to breathe. She can withstand a high level of CO2 - which a normal person can not and they would rush to the surface. We didn't take him up on the bet!


ONCOLOGY:

We went to Oncology following Pulmonary. Haven needed to have her levels and blood work done. When we met with Cardiology yesterday he wanted to have her tested for Anemia. So this was done today as well. We will not have results back until next week. Everything went as planned here.

Child Life talked to us about Sunrise Camp for Kids with Cancer. So we are going to sign Haven up in the 5 year old camp. It's a daily camp (she doesn't stay over). It's only for kids with Cancer. There are Pediatric Oncologists and Oncology nurses on site. Our own Nurse Katie volunteers at the camp and Kim at Child Life is there. We think it will be really good for Haven. It's free for her to go and she will have a blast doing crafts. This will be in August.

CARDIOLOGY

Next we went over to Pediatric Cardiology to get Haven hooked up on her holter. We are monitoring her heart rate. She runs high so the doctor said he would like to see her have fluctuations and get down in to the 80's during sleep. We will get the results from him next week. He doesn't want to put her on medication because she is already on so much. He wants to have an Echocardiogram done every 4 - 6 months to monitor her.


Here is Miss Haven with the heart monitor on. She was happy it was in a little purse. We were worried it was going to be too big but they said this is the size everyone gets. The monitor is in the little bag and it hangs around her neck. She has to sleep and everything with it on.

Here are a few of the leads. These are on her upper chest. There are more that are up on the side of her neck and all on her belly area. She is doing pretty well but she keeps saying the tape is pulling. Luckily we don't have a hairy chest to worry about. She is definitely concerned about taking all of them off.

She is always concerned about someone putting something sticky on her port and messing it up. So she always tells nurses and doctors not to touch her port and to make sure stickies don't get on it. Luckily - we didn't have to have any there.

Well, this is long but it's been a long day. I'm going on my 4th day straight of a constant migraine. I hope Haven sleeps tonight. And I'm super excited it's Friday tomorrow and NO DOCTORS!!!!

Love to all!

Sleep Talking Episode 5000

So here is Haven...sound asleep at 7pm yesterday. My dad was having a wonderful conversation with her. This went on for over 40 minutes.