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

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!

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.