Friday, July 31, 2009

Haven's Friday Report

This is what we are doing tonight....Right now Haven is standing in front of me working on a butterfly my friend Aleah gave to her. She has been working on it for a while.

I just thought I'd throw out some news from the Friday visit.

Well we hope we're working on getting rid of the C. Diff - I believe they are giving her a few more days before they decide if she needs to be on a different medication.

Besides the viruses contracted by being in the hospital the doctors are extremely happy with the results so far from Haven's treatment. He even exclaimed to Kris today how much extreme pressure he was under to go in front of his peers and request Hi CY treatment for Haven with no known info as to whether or not this would even do anything. We can tell he is pleased so far.

Her doctor has decided to leave the Hickman line in for now. He said we are not even in a safety zone yet where they would feel comfortable removing it. That at any time she might need to have a medication that requires that line. So as long as it is not infected we will keep it.

Haven has been sleeping PERFECTLY at night and she has been able to make it to the potty about 90% of the time - even with extreme diarhea. She can actually feel when she has to go potty now. She is also feeling some pain. Not as much as normal people but she is feeling it. She definitely has more energy than she did before and just her wanting to exercise and do stuff is awesome.

We still have issues on food and drinking and the 30 other miscellaneous symptoms. I don't have a report on her Prolactin and am not even sure it's been tested since the start of this. She won't meet with Endocrine until the end of Summer for her growth hormone testing and Coritisol levels. She will meet with Pulmonary once she is cleared of the viruses. We will probably move her sleep study out to September or October when she is not in a danger zone. I really don't want any other viruses right now.

But we are so far happy with what we have seen and it's only been a few weeks. We and Haven have so much invested in this medication and the wonders of science and the knowledge of our doctors and we're trying not to get on them about seeing signs. We know her doctors have a lot invested in Haven and her treatments and the hopes that this actually works and can save her from ROHHAD. Only time will tell......

She will have another MRI of the Ganglioneuroblastoma Tumor in September to ensure that it has not grown over the past few months.

Anyway, we're going to enjoy the weekend together and get some more long walks and exercising in.

love to all
M

Haven working out

These are horrible cell phone pictures but they are funny none the less. Haven's physical therapist came on Thursday and they worked out for about an hour. Check her out!
Here she is working out the arms by tossing a balloon. Her therapist wants her to get a ball to practice throwing and catching. So I will pick that up this weekend.

Here she is throwing the balloon again. She had a great time and actually enjoyed getting her body moving. She was also running around kicking it. We noticed she favors the right leg here (as well as, going up the stairs). She did an awesome job!


After her workout her little hairs were all sweaty so she wanted to put a towel over her head. She slept for about 4 hours after work out. She really loves doing it and I think it gets her body feeling better.

Thursday, July 30, 2009

Finally adding photos

I've had some major computer issues this week and I'm not sure how long my laptop will even work tonight...so I'm adding some photos to Haven's flickr site but this is one of my faves.




Last Sunday Kris and I took Haven on a short 10 minute boat ride in the harbor. No one was on the boats so we thought it would be something different for her to experience. I'm especially happy we did it now because she's even more locked down with the C. Diff virus.



But I love that her eyes are once again becoming a clear blue color.

Clostridium difficile or C. Diff

FROM MSNBC site about C. Diff

Scientists cultured the imprint of a health care worker's gloved hand after examining a patient infected with Clostridium difficile, known as C. diff. The larger yellow colonies outlining the fingers are clusters of the potentially deadly bacteria responsible for at least 300,000 infections a year in U.S. hospitals. The patient had showered an hour before the specimen was collected, say researchers.



I received a phone call yesterday from Oncology that Haven has now tested positive for Clostridium difficile or C. Diff. I have found articles on MSNBC about it. It is a very serious virus and we are taking all the precautions we can. After work yesterday I ran over to the hospital to pick up some medication to help her with it. Seems as though she has had it for a few weeks now. Just takes a while to find it.

What is C. Diff:

C Difficile, or clostridium difficile infection, is a disease commonly contracted in hospital. C Difficile causes diarrhea and can also cause damage to the lining of the bowels. Generally the symptoms are mild and patients suffering from C Difficile recover fully in a matter of days. However, if C Difficile is contracted by a patient already in a weakened condition, it can be much more serious or even potentially fatal.


We know Haven contracted it while in isolation at the hospital in Peds Oncology. However, everyone always made sure to wear gloves. There were however, many times I was concerned about the cleanliness of the hospital.

THE KITCHEN???? Who monitors the kitchen. The people bringing the food in weren't always wearing a mask - I know for a fact they didn't wear them coming up the elevators and how many people are in the elevators when they are bringing up the food? Did the people in the kitchen clean their hands? Is the kitchen even clean?

How about the time the kitchen brought a cup to Haven for her drink and there was about 1/4" of DUST in the bottom of the cup????? What's with that??? And how about the 3 times they brought her EXPIRED yogurt that we returned and complained about. Should a child or anyone on an intense chemotherapy eat from the kitchen?

How about the bed and the guy putting it together? Where has the bed been and is he clean? His hands were all over the bed with no gloves! The whole tent smelled and is normally used for Schizophrenia patients to keep them locked in. HOW CLEAN IS IT?

I GUARANTEE the next time Haven is in the hospital for an overnight stay we will be extremely strict on who comes in and did they wash, are they wearing gloves, where is the mask? She also WILL NOT eat from the kitchen in the hospital. I will make and bring food every day. She is supposed to go in for surgery again and she will not eat at that hospital.

Tuesday, July 28, 2009

Physical Therapy

Haven had her first visit with her physical therapist today. She was very cool and I like her a lot. She told me a bit of her background - she completed school at Chapman in CA and stayed in the west for a long time and somehow ended up on the East coast. So I thought it was kinda funny - we discussed our West Coast preferences.

She really worked Haven today and I can tell you I have never seen Haven do the stuff she did today.

Easy stuff was to have her walk and push on her hands to show her strength. I know Haven's arms are strong because she can wrestle me very well. It's more her legs.

The other day I made Haven use her left leg to get up the stairs. Although she was extremely mad at me for making her do that I noticed that she definitely has less strength in the left leg and prefers to use the right. By the time we got to the top of 6 steps she couldn't pull herself up anymore. This was also the leg they noticed the bone density loss.

I think she worked on Haven for an hour. Made her sit and stand over and over without holding anything to help her up. Made her climb the stairs, she did push-ups, laid on her side and lift her legs up over and over again. I was laughing at the push-ups. When her dad does push-ups she likes to kick him to make him work harder - so I told her that since she did push-ups she'll have to make dad do them.

We now have some exercises to work on with Haven. She was completely worn out after PT and fell asleep before the therapist was gone.

Kris will work on Haven's exercises tomorrow and then the PT will be back on Thursday for more work with Haven. Once we get the Hickman removed Haven can begin going to the pool for therapy. I hope with the walking and now the PT she'll begin to lose the weight too!!!

Hickman line

I can't stand this port. We have to change her everyday and she is
allergic to all tape we use. We've tried 4 different types of
dressings. If we get an infection here we are in trouble!
--misty

EDIT: After our visit to clinic today it has become urgent for Haven to have the line removed. While we were meeting with the Hi CY specialist they contacted her surgeon's office to get Haven in for a physical and approval for surgery. We love her surgeon so we feel good about this surgery. Plus I really want this line removed.

They will do a swab test on Friday to see if it has a fungus growing and to confirm there is no fungal virus around the port. It has a hint of green near the wound site and it's pretty red.

Haven will have the Cathoport accessed on Friday to clear it out and prep it to start being used again. I'm guessing surgery in the next 2 weeks for Miss Haven. This will be her 6th surgery in 1 1/2 years.

3 weeks and still have virus

It's been 3 weeks since finding the virus and Haven still has it. She has to have 3 weeks consistent negative testing....so again we will start the 3 weeks over again. However, I can guarantee Miss Haven is still infected. This time we had blood in the sample and that really bothers me.

Haven's counts were on the lower side today - lower than they had been but I was told with blood in her stool that her counts would go down. Plus she is still trying to get rid of this infection as best as she can.



Vancomycin-Resistant Enterococci (VRE)

Miss Haven out for a stroll around Fells Point

We finally found out what the virus is that Haven has. She was supposed to be in Pulmonary this morning at 9am. They called Oncology to discuss Haven's situation and precautions for her but then called me back and due to her virus she is unable to come to their clinic until she is confirmed negative. It's best for her health and any other immune suppressed children.

It is called:

Vancomycin-Resistant Enterococci (VRE)

They are a type of bacteria called enterococci that have developed resistance to many antibiotics, especially vancomycin. Enterococci bacteria live in our intestines and on our skin, usually without causing problems.

VRE, like many bacteria, can be spread from one person to another through casual contact or through contaminated objects. Most often, VRE is spread from the hands of a health professional to a patient in a hospital or other health care setting. VRE is not usually spread through the air like the common cold or flu virus unless you have VRE pneumonia and are coughing, which is rare.

VRE infections generally only occur among people who have weakened immune systems, such as people with long-term illnesses or people who have had major surgery or other medical procedures and have been treated with multiple antibiotics.

If you get a serious infection with VRE, you may be isolated in a private hospital room to reduce the chances of spreading the bacteria to others. When your doctors and nurses are caring for you, they may use extra precautions such as wearing gloves and gowns.

Monday, July 27, 2009

Thank you everyone

Just want to send a thank you friends and family for sending stuff to Miss Haven. She has received puzzles and hats and scarves. My aunt and Grandma sent her some scarves from a friend and my friends have given her puzzles.

One of my friends had some scarves sent to Haven from iwearitwell.com. The owner is a cancer survivor and she decided to make scarves for people going through chemo that are super soft on the head. From experience she was able to pick the best fabrics. Haven's favorites were the ones she was able to make herself. Lisa ordered some that were white and came with fabric markers. Haven worked hard on these and has worn them since. Check her out.


Here she is working on her scarf. Coloring and making it beautiful.

Here is the final product! She's awesome. She worked on these for about an hour. So beautiful.

Busy weekend

Well I guess it started on Friday. Haven was suppose to get her IVIG Chemo on Friday. This is usually a 6 hour chemo but with her levels doing pretty well they decided not to give it to her and would wait a couple more weeks.

Instead Haven received an immune booster in the form of a shot - she was not ready for this and neither were we but she made it through pretty well. This will be tested in 4 weeks to see how her immune system is handling it.

Then we have had a lot of issues with the tape staying on Haven's body. Normally we're supposed to change her port dressing once a week. But with Haven we have to change it every 2 days. It just won't stick to her. She had it changed on Friday and this morning she woke me up saying we had a tape emergency. So I had to change it this morning. I came home from work tonight and the tape is already coming off again! I know the home care is getting irritated because I keep calling and they keep asking why I have to change it so much. Last week we had to change her 3 times.

Last Friday the doctors listed Haven as high maintenance on her port. Which means the risk is greater than the benefit. They want to have surgery to remove it as soon as possible. We just can't keep it covered. They said some patients just can't wear the tape - the skin rejects it. Of course, I would have that rare child! :)

Saturday we did a lot of house stuff but we did get to go for a walk!

It wasn't windy so we let her take her mask off for the picture. She is wearing a new scarf she got from my friend Lisa.

Wednesday, July 22, 2009

Wishing for sleep....

So it's 11pm. All is quiet but the last few nights have been this way. Tonight I am hoping for sleep.

The past couple of nights Haven has woken up at 1am and pretty much woke me up about every 45 minutes through the entire night with extreme diarhea. Her stomach has been hurting for for an entire 2 days now. I have to rub it constantly. Tonight she asked me if I my belly ever hurt like that when I was little and what I did to make it feel better.

Then tonight her gums were bleeding really bad. I know her teeth were fine. We went to her dentist a week before her treatments started and they said her teeth were great and nothing was loose. Not to expect her to lose any teeth before age 7. Now with an infection they are starting to bleed and she is complaining of pain there.

It's crazy because we aren't allowed to talk of if we've noticed anything good or bad from the treatments yet because it's too soon to discuss that stuff. But there are a few things we've noticed:

1. Pottying - she is doing EXCELLENT on the pottying. I think we only have small accidents when sleeping now. Even with the intestinal infection - she makes it to the potty every time and she can wear the same diaper all day long.

2. Blood Pressure - Haven is now officially off the Amlodipine. She has been off for about 3 weeks now and her blood pressure is great. She was on this for 2 years and to be off this is awesome.

There are still many areas that we have no changes in and two main ones are food and sleep. Both are still crazy. Although I do think she is starting to feel pain - which is good but not something she is used to.

Anyway, I'm going to go to bed. I have a few hours before we're up for the night.

RESTRICTED!!!!

Yesterday I took Haven to the hospital to get her testing and lab work done. We had to bring wonderful bagged surprises for Nurse Katie. :) This was Haven's 1st repeat testing for the viral infection. I guarantee she still has the infection so we will restart our 3 week of negative testing next week.


Here is Miss Haven hanging out in the isolation room. She is not allowed to stop at the front desk and get her vitals done where the other children have it done. She is also not allowed in the playroom so we had a bit of a battle there. They brought everything to her. Blood pressure was great 100/65 but her weight is now 78 pounds. This I was not happy about but we did only start walking this past weekend after over 4 weeks of laying in a bed.



Nurse Katie taking Haven's blood. Our port wasn't working too well so it had to be flushed extra to get the blood flowing.

After Katie checked Haven out the Hi CY specialist came in. She only works with children who are on the Hi CY treatment. She asked me if I had all the rules and if we were following them as these are the best way to keep Haven infection free.

Well no....I never got any rules. Kris and I were trying to figure out what we could do with Haven and where we could take her. I had talked to the other mom and she gave me a general outline of her son. But I never would've guessed at these restrictions. Obviously what we did last weekend with her IS NOT ALLOWED!

Place Haven can't go:

  • Grocery stores
  • Churches
  • Malls/Department stores
  • Restaurants
  • Crowded outside places
  • Gardens with lots of plant life
  • Pretty much anything that has a door and contains people
  • If it's windy she should not be outside

We also are supposed to have her in the GREEN mask not the pink mask. The pink one does not protect her from any germs. Those are only for the health care workers and us so we don't sneeze on her or give her germs. So of course everything ran through my head of where we took her and with only the pink mask on. She will now only wear the green mask and I got a few more from the hospital when we were there.

Food Haven can't eat:

  • Fresh fruits and veggies
  • Soft cheeses
  • French toast
  • Microwave food must be checked for any cold spots
  • NO CHINESE
  • No fast food restaurant food
  • Nothing from a machine (fountain soda or soft serve ice cream/yogurt)
  • All meats cooked to a specific temp
  • Meats must remain separate from other food in grocery cart, shopping bags and refrigerator
  • No DELI meats

Well....no one told me about deli meats and we've been eating stupid turkey sandwiches. Pretty much anything someone could touch or could be outside is not allowed. So now I'm relooking at our food again. It has to be low sodium, low sugar, low fat, low carbs, and not touched by anyone!

I was a bit upset that we didn't have all of these rules ahead of time. There are 10 pages of rules so the above is only a few. We can take Haven out she just can't be where any other people are! AWESOME!

But we will follow these specifics very close as we do not want anything to prolong her treatments or to cause her to be back in the hospital. EXCEPT they want her to drink whole milk - I have to draw the line at some point. We only give her skim fat free and that will remain as is.

Tuesday, July 21, 2009

Sunday outing on the promenade

We start each day with a flushing of the port. Haven needs 3 cc's of Heparin each day to keep the port from clogging up. She does very well with all of this.




Then we went out for another stroll on the promenade. I really wanted to get Haven to walk this time. She did... she probably walked for about 30 minutes for being unable to stand.




I think she had a lot of fun out there. We talked to the ducks in the water and waved to all the doggies in the park. She really had a great time.

That night I surpised Haven with a new puzzle. A 500 piece puzzle. She was going crazy until she realized how big it was. It took us about 1 1/2 hours to get the border together. This one we worked on together. As you can see, she was getting a bit tired after such a long walk and then working on the puzzle!
Monday I came home from work and we immediately went out for our walk. Haven really wanted to go look for doggies and watch them play. So we spent about 45 minutes wandering the harbor.
Then we came home to eat and start our puzzle up again:


Haven stayed up until midnight with me working on this puzzle! Check it out - we did a 500 piece puzzle in about a half a day!!!!!! It's beautiful...now what do we do with it. I hate to take it apart! She did such a great job.

Thank You's and Sending Packages

There are always so many people to thank -

My friends for making us dinners
My friends for buying Haven hats and puzzles
So MANY people in the world I don't know that send her little gifts and cards
Our friends for listening to us complain and vent about the entire situation

but I have to give a huge THANK YOU to Jim and Jeannie - Grandpa Beard-Off and Grandma Sing. For all your help and covering the costs of our BMT housing and sending us grocery money. I can't tell you how amazing you are because you already know. It's just awesome and we'd never ask you for it...... You guys are amazing! :)

Oh...as for packages! Please do not send to the hospital - we are now in the BMT housing. Although we have an address there we prefer not to receive them there. We're having packages sent to my mom and she will get them to me. If you haven't received the address I will send it out.

Love to everyone!

mmmmm....real food

So my friends at Under Armour decided to cook up a plan to make us some good home cooked meals. We're tired and the last thing on our mind is cooking and grocery shopping and doing normal life. Plus I'm so sick of eating Turkey sandwiches I am banning deli meats! Then there is the cost of the grocery store --- yes only 1 grocery store in the area! It is at least 2 x or more than our store just 35 miles away! Lean cuisine meals are $4 a piece here but at our house are $2. One pound of hamburger meat here is $7 - I only pay $3.50 at home. Oh and the Colby cheese - not really a premium cheese...not gormet...just Colby -- $11.00 a pound!!!!!!! Normally I get 3/4 pound of cheese - well I didn't look at the price and paid $9.00 for CHEESE!!!!! What the......

So we are truly grateful to all my friends at work - so many have signed up on the sheet to make us dinners 2 nights a week. I have to say ----- SHANNON ---- the meatloaf and mashed potatoes!!!! LOVED THEM!!!! Awesome dinner and I can't tell you how nice it was to have real food!

thanks to everyone - love you lots!

Moving out

So some know we moved out.....we kind of laid low for the weekend and just let Haven get used to more new surroundings. She's pretty confused as to why she can't go home. After talking with the other mom I asked about rules of taking her outside. I didn't want to keep her locked in a 1 bedroom apartment for another few months. We are happy we moved out but not happy about the infection.

So we are allowed to take her out for walks but she must wear her mask and is not allowed anywhere with a crowd of people. So we took her down to the promenade and walked around the harbor.

A few pics from our outing:

Kris and Haven on our walk. We probably stayed out for 30 minutes. She was pretty exhausted and trying to get used to it all. We hadn't been told by doctors where we could go or which mask she had to wear so we figured the pink one was enough. She really likes the pink more than the blue.

Me and Haven hanging out. This boardwalk goes on forever. We started at the Korean Veterans Memorial and enjoyed the scenery.



Haven LOVES puzzles. After a nap she wanted to work on her new puzzle. This is a 100 piece puzzle and she did the entire thing by herself. I had to take a picture of her last puzzle piece. She was very excited to finish it.

The BMT housing is very nice. I was very concerned before we got there but it is small enough to get to her if she needs us and to hear every noise but we're also not used to being in something this small. Kris took Haven on a tour of the housing. There is a rooftop deck that the kids can go on. We haven't had Haven up there yet except to see it on the first day. Maybe we'll take her up this weekend.

This was a huge day for her. She didn't actually do any walking since this was her first time out. We knew she'd be exhausted and we didn't want any tripping or falling. I'd prefer to just wrap her in bubblewrap and leave it that way until this new port is out!

Lots to catch up on

Well....I've been exhausted. I can barely muster the energy at night to type on her blog. Honestly, I wish I could say how I really feel about this disease and fighting cancer and dealing with chemotherapy but I think it would be too much for some people to hear. This sucks. We try as hard as we can to keep Haven happy and not depressed but we know she is. How could she not be? She has never had a normal child life. More than 75% of her life has been in and out of hospitals and getting medical treatments, surgeries, crazy medications.

I was talking to another mom going through the same thing and getting the same treatment. She was telling me how exhausted she is and that she just can't focus on anything else. She has no idea what is going on in the real world. We talked for a long time while doing laundry. Her son is 6 years old and has Neuroblastoma Cancer so we had lots to talk about. I assumed that may be she'd been searching as long as I had as to what was wrong with her child. I was giving her details about Haven and how long we have been doing this and working to find out what is wrong with her. She laughed at me and I smiled and she said "I can't believe you've been doing this for almost 4 years - we've only been doing it for 1 year". She went on to say she didn't know if she could do it that long and how insane we must be.

It was just a good conversation and now we're in the same BMT housing and I see her a lot. I've met her son and talked to him. Just the cutest sweetest boy. She wanted to get the kids together to blow bubbles or play......but Haven is on isolation until this virus is gone. Right now I just don't see an end to this virus. I believe Haven went to the bathroom 15 times today. Needless to say she is in pain and now her stomach is constantly hurting. I can't fix it and I don't know what to do. There is no medication to get rid of it.

So, I have lots to catch up on and will post a couple posts to get it all up there. I have added new pictures to her flickr site you can check out.

Benefit Ride for Haven


We have some great friends out there who are willing to help out any way they can....even when we don't ask.


Three of our good friends, who also ride mountain bikes, devised a plan to help out where they can.


I received an email about 2 weeks ago from our friend Tom. He wanted to know if it would be ok to do a small benefit ride for Haven. Of course I said yes - let me know what you need from us. Well....that's all he needed. About a week after that I got another note from Tom, Zach, and Sarah that they were putting this huge event on and had park ranger approval and lots of support from other companies and people willing to volunteer.


I can honestly say, we've never know anyone with more energy and more enthusiasm than Tom. He is just awesome. We can't thank him enough and we appreciate everything Zach and Sarah are doing with Tom. The entire mountain bike community has totally chipped in on this with raffle prizes and gift certificates.


The other amazing thing.....they've never met my daughter! I have come to know many people over the past couple of years who love my baby and have never met her. These 3 have only met Kris and I one time.....but still do anything they can to help out.

The best thing about this is that this many more hundred people know about Neuroblastoma Cancer and ROHHAD Syndrome. Most of them probably never heard of either and now we're spreading the word.


I know in this economy it's hard to think of what you can do to raise money, awareness, or donate but our friends are doing an awesome job. I couldn't ask for more. We appreciate everything they are doing and we hope they have LOTS OF FUN!!!!! We can't wait to see pictures from the event.

Good luck to everyone out there....eat lots of food and have a GREAT time! I have a perma link to the right on Haven's site and you can click the picture above to check it out too!

Thanks again T, Z, S.....

Friday, July 17, 2009

Another infection

Today Haven was wisked away by nurses in protective gear as we were informed that she has another infection. This one a viral infection in the intestines. I have emailed our family members more details but the quick and dirty (I'm tired) is:


Haven has a gastrointestinal virus that requires her to be isolated from other children on the floor now and will be placed in a separate isolation room. She is required to have lab work on her potty and blood for 3 weeks. She needs to test negative for 3 weeks straight in order to be considered clear of this infection. There is no medication to give to her for this right now. One of the other worries is that this can enter her blood stream making life extreme hell! Right now it's up to her body to get it out.

Seems that this was received - as we had been warned could happen - by being in the hospital for a long period of time at a 0 count immune system. There is so much more bacteria in a hospital and the push is to get the kids out as soon as physically able so they do not have these issues.

So for the next 3 weeks she will be checked and checked again for this virus and HOPEFULLY she will kick this one like she did the last one.

I just can't believe we keep going along - one day we get good news and the next day we get horrible news......I'm not sure how much longer we can do the roller coaster! We just want to take our baby home!

Thursday, July 16, 2009

A bit more training and walkthrough of the BMT housing

Well about 13 days in to our Hi CY treatment I sat down with the Social Worker (as stated below) and reviewed everything we're about to do and everything we're about to need. One major thing was the housing we are required to move to after the hospital.

They set us up on a tour of the housing and we did the walkthrough with two of the managers of the foundation that the housing falls under. Little did we know and we weren't told until almost 2 weeks in to it that insurance does not cover the housing but we are still required to live in the housing. So I asked how much the housing is and it's $600 a month. Well.........not a bill we had planned for nor do we have a budget for. AWESOME! Just when you cancel cable to try to cut down to cover medical needs another bill 3x the amount lands on your door! I'm still working on all the co-pays and getting those paid. I believe we are now at around $3,000 in co-pays needing to be paid for the first half of the year. I was able to get a quite a bit paid with her earlier Team Haven support.

Since there is no assistance for a ROHHAD child we really have no one to call or ask for help from. And the Cancer foundation that had sent us gas cards and grocery cards was now out of business due to the economy. We are trying to get assistance from other Cancer organizations but since no one is really donating they don't really have anything to give.

Then this past Tuesday I spent 2 hours with our in home care nurse. She did the "parent orientation" package with me. Reviewed all of Haven's supplies that are used with cleaning and changing the dressing of the central line. We reviewed the medications that she is on and if I understand how to administer them when in the house. Personally, I still don't like cleaning the line and changing the dressing. I'm still scared to do the Heparin flush. I don't like it. I get very nervous. So I really prefer Kris to do this.

Haven has slept much better the past 3 nights now. Only a couple of hours of yelling and then it's silent. We're still dealing with diarhea and extreme fatigue. I would think after almost 3 weeks of diarhea she'd be done!

oh....and I'm completely and utterly sick of eating turkey sandwiches. I can't stand another turkey sandwich. I have decided there will be a year long ban of deli meats in my house once we get home. Lean Cuisines are no better.....but what do you do when trapped? Spend $20 a meal in the cafeteria or eat another damn turkey sandwich!

Thank you to everyone for checking in on our baby. Some exciting news: My 5 year old can do a 300 pc puzzle all by herself! I'm now getting her 500 pc. :)

Wednesday, July 15, 2009

NEED SLEEP......

Well Friday - Sunday were amazingly horrible. Haven's sleep walking has been extremely INSANE! We've never seen her like this. It lasts all night. One night she was trying to run away pointing at the ceiling telling me some guy was trying to hit her with a hammer. I have no idea where that came from but I had work on her for a while to get her to calm down. Then I'm changing completely full diapers at least 4 times in the night. I think I had 5 coffees on Monday before I even knew what was going on.


Then Monday and Tuesday she has slept beautifully! Slept all night - no noises - no yelling. We even made it 4 hours without an accident in the diaper and made it to the potty each time! Super excited about that.



Here is my baby girl. She refuses to look at the camera right now. She is wearing her new gown from Emmy. It has monkeys all over it - her favorite gown.

Haven is doing well with everything so far that has been done to her or happened to her. There is only one area she has issues with and that's mom and dad constantly want to rub her head or kiss her head. She doesn't want anyone touching her hair or kissing her head. She is very protective of her baby hairs and doesn't want anymore to come out. So we try as hard as we can but we just want to kiss her little head so much. We keep making sure she knows how beautiful she is and how much we love her. She asked me tonight if her scars were beautiful. Of course they are. So we discussed each of her scars from surgery. She likes me to check them all and make sure they are ok. Then she is happy.

We hope to get some smiles out of her soon!

Love to all

M

Monday, July 13, 2009

Baby Hairs vs. Naked Hair

I have been too exhausted to write much lately. I don't think I slept really the past two nights. Haven is extremely intense in her sleep and the screaming is only getting crazier. I'll have to go in to the sleep walking post later....this is about Baby Hair vs. Naked Hair.

Last Thursday I talked to Haven's nurse Kim and asked her since Haven seems to be doing very well and going as planned and her hair isn't coming out did she think that maybe she would keep it. It was cool, I believe Kim struggled with giving me a "maybe" but did say that most kids do lose it. But it was day 13 and Haven hadn't lost it yet so I was hoping.

I called Kris and told him that there could be a chance that Haven might keep her hair and that I was happy we'd never talked to her about it so she didn't worry.

It wasn't more than an hour later I gave her a shower and had a handful of hair wrapped through my fingers. I hid it from her and threw it in the trash and gently rinsed her down. Then nothing else happened.

Friday was similar. Nothing crazy on the hair at all and I was still extremely hopeful.


This was Haven getting her medicines and vitals done by one of her favorite nurses, Claire on Saturday. If she's not sleeping she's on that computer. She was still enjoying a 90% full head of hair. Only a small bit had come out. Really nothing too major. We just kept hiding it from her. The picture I had below was from way underneath her hair so she still couldn't see anything crazy.

This was Haven when she woke up on Sunday. It was scary how fast. She woke me up around 5am saying that she was really itchy and felt really cold. She said something was in her pillow. So I turned on the lights and I almost passed out. I couldn't believe that over night it was gone. Everything was in her bed and all over her. I didn't know what to say to her and we weren't prepared to tell her that it was going to completely come out. It just happened so fast.

There was so much itching and sensitivity to her scalp. I contacted my sister-n-law Martha, she was diagnosed with Breast Cancer in her early 20's, for advise on how to help Haven with the itching and if she could send before, during, and after pictures to Haven so I could show her.

She was quick to offer a solution that she used. First she shaved as much as she could of her hair and then she used tape to get the little hairs off. I told this to Haven and she gave me this look like I was crazy and that Martha was even crazier. She told me absolutely no way was I gonna shave her baby hairs or put tape on her head. She wants to keep her baby hairs. So we'll keep 'em.

She did freak out a bit that she didn't want people to see her baby hairs and she needed a hat fast. So I tried to find a hat and drove all over Canton to find a store. I hate cities and I'm not a city person.....all they have is little boutiques and on Sunday it's hard to find anyone open.

I finally found a shop that had scarves and picked out a beautiful Haven pink one. Brought it back to her and was informed that it wasn't really Haven pink because it had a bit too much red in it. So I plan that my daughter is going to be a designer like her dad which will drive me insane. I can only handle one designer in the family!

She is doing pretty well all things considered. We are all getting used to the hair but we try to not baby her too much. She won't let us touch it or rub her head and when you look at it you just want to kiss it all over. :)

We love our little girl.

Sunday, July 12, 2009

Thanks Emmy!

My friend at work, Emily, has over the past year become Haven's surrogate Aunt in MD. She is constantly keeping up on Haven and getting her crazy little gifts that no one else would ever find. Haven just loves them.

Well I was talking to her about how hard it is for us to find a gown at the hospital that fits Haven. There is only one type it's the green ones that fit her and Haven goes through maybe 10 gowns a day so keeping them on the floor for her is hard. We even take all of them out as soon as they bring up the new load of linens.

Well Aunt Emmy sent a picture to Haven of a hospital gown and she freaked out. She had to have it right away. First Em and I figured it would be best to start with a proto and make sure the fit is good. I sent some measurements specs over to her of the gown that fits Haven and WHA LA!!!

Over night Emily made her a beautiful gown. I brought it in to Haven on Friday evening and she just loves it. Had to get a shower and put it on immediately to walk around the floor and show all the nurses.

So here she is - her new gown from Em.


Saturday, July 11, 2009

Big day

We've had a few things to discuss today.

EDIT: On Friday Haven had a pretty full head of hair and only a small bit coming out. Saturday she woke up to this pile in her bed and she threw it on the floor. Last night I cut her hair to a bob length thinking maybe we'd be able to keep a bit of it. This morning we woke up to about 75% of her hair in her bed. At this rate I guess it will be completely gone by Tuesday.

Currently we are trying to find a place to get scarves. I told her I would look for scarves that were light fabric since it's summer and get some pretty colors and stuff. She was happy with that. It's the itching from the hair that is driving her crazy. I just can't stop it. Every 10 minutes I'm wiping hair off her back to help her out.

Friday, July 10, 2009

ROHHAD slowly enters the world.....

It's been a slow long process of researching and sending info to different organizations hoping to get the word out there about ROHHAD. I spent a lot of time collecting info and getting it out there. Many of the Moms of ROHHAD helped me out. Especially grateful to Vicki for all her research and info on her daughter Leigh Ann. Julie has been my rock and constantly giving me any info I need about her family and Mason. Reading other blogs from other families and learning about their children. EuroMom for knowing more than a million doctors I've talked to and overloading me - thank you!

It's crazy at the hospital with people who haven't worked with Haven. I've had a few people come up to me and say "Did you know your daughter's picture is on the Internet?"

Well at least it brings a chuckle to me. Yes I know she's on the Internet. It wasn't a hard choice to put her on there. So few people know about ROHHAD and the only way to get the info out there is to tell our story.

Last year I kept bogging down the NIH and sending info on ROHHAD to them. After about 3 months they emailed me back thanking me for the info and that they had researched it and have put the info on GARD.

Well tonight I randomly searched ROHHAD as I usually do and wha la...it's now on NORD!

I met with our social worker this week and she tells me "sorry, there is no assistance or organization for ROHHAD". Yes I know.

My only hope is that some day there will be an organization that will help children and families with ROHHAD. An organization that helps you because you have the illness not only when you stop breathing on your own. It's a hard disease.

My child is still able to breathe on her own - many can not. They rely on ventilators.

My child has 70% of the other symptoms of ROHHAD. So where do we go from here? You can't get assistance on "inability to feel pain" or "inability to show emotions or cry" or "inability to sleep because your mind doesn't know it's day or night" or "lack of sensation to know to go to the bathroom" or "even if you don't eat you'll gain weight".

The more people that know hopefully will help in bringing about help for our children.

Children we constantly think about with ROHHAD:

Leigh Ann
Mason
Sophia
Joshua
Nikki
Euro
Malaysia
Jenna
Carla

We love all of you. thank you to everyone for getting the word out there and sharing your story. It really makes us stronger in the fight!

Thursday, July 9, 2009

Exciting night of sleep!

Well last night was again an adventure! After Haven took the Benadryl for the itching of the antibiotics she fell asleep. By 12:30 am she was in a complete sleep walking fit. I have never seen her like this EVER! She was kicking me and punching me. Then she started trying to claw my arms and bite me. The nurse and I were trying to calm her down and get her still so I could change her diaper. It just wasn't happening. Then she started screaming and yelling and this entire time I was worried that she was going to yank on one of her ports.

Just when I finally got her calmed down she began to crawl up to the top of the bed on her back. I had to keep grabbing her feet and dragging her back down. It probably took 10 minutes of fighting to get her diaper changed. I could barely stand my back her so bad trying to hold her down and lift her body to change her.



Today she has mostly stayed in this position! It wasn't a very active day. The doctors have come in and checked out her port for any signs of infections and her gums have started swelling up over her teeth so they are watching that.

Two nights ago Haven kept dropping down in to the 80's on her oxygen. She has had really horrible snoring issues since coming in to the hospital. Kris said she actually went down to 84 a couple of times. That the pulse ox alarm was going off constantly.

Last night Haven kept waking herself up choking. She had this horrible gurgly sound in her throat and a loud deep snore. I believe she woke her self up 7 times choking. I tried to check her oxygen each time and I only remember seeing it at 93. It could be all the medication and it could be all the fluids they've kept her pumped up with but no one really seems to concerned about it. We are more concerned and keep pointing it out.

Wednesday, July 8, 2009

Fighting some sort of infection

Today was a busy day for Miss Haven. She has had a fever for quite a while today. We've been watching her since yesterday since she was running a bit warm and having chills. With the fever Haven received many visits from doctors today. With worry that there could be an infection in the port lines they had to access the other port today to get cultures on both ports. She has also had the diarhea for about 5 days straight now. She can barely make to the end of her meal without spending 20 minutes in the bathroom.

With the bad dehydration from yesterday the doctors decided they would reduce the Acyclovir medication from 3 times a day to 1 time a day. She receives that at midnight now. But with the fevers she has been started on another 2 medications.

She is on antibacterial, antiviral, and antifungal medications. Then she is also taking a medication that is trying to jump start her bone marrow in to making healthy cells. Today she began two new medications to fight the infections.

The bone marrow medication really hurts her bones. Last night we ordered the Dilauded because she was hurting so bad. It mostly affected her shins, ankles, and neck.

One of the new medications for the infection really did her in tonight. We were told it's not an allergic reaction but if it goes in to fast the body sort of freaks out because it is overloaded with antihistimines. She developed what is called "Redman's Symptom". Pretty much she went in to an itching and scratching frenzy. Yelling that her hair was hurting and just digging at her face. Then she turned red from face all the way down around her shoulders and back. This is the Redmans symptom. So she was juiced up with Benadryl. She has to take this medication every 8 hours so on her next dose she will get it at a slower pace.

Tomorrow we should find out the test results from the labs and cultures taken today. I really hope they don't find anything crazy.

She is sleeping right now with a bit of snore. She has had a couple of choking issues and our nurse came in to check on her but all is ok.

I hope she gets some good rest tonight and let's hope for a calm day tomorrow. :)

Love to all
M

Tuesday, July 7, 2009

Our Past 24 Hours

This has been the WORST 24 hours we've endured so far and I'm sure we will have many more of these days.

I spent my first night ever in the hospital with Haven. Kris always stays and he had been at the hospital for the past 12 days straight so I had to give him a break and let him get some sleep.

I'll start the night with Haven never slept. She maybe got a total of 1 hour of sleep last night. Haven does not handle change very well. She likes an extremely structured scheduled and the switch of me staying and dad going home just threw her off. She talked about it for over 5 hours that she didn't know I was staying and dad was leaving. Even though he told her 4 times exactly what was going to happen.

At 6am on one of the nurses visits she told me Haven would need a blood transfusion today. So immediately I was wide awake and sent Kris a text. I wasn't sure I could handle a transfusion. I didn't want it to be on my day. She needed the transfusion because her resting heart rate all night was near 170 and her counts are now at 0.

Haven had the worst day of diarhea. Every single time she ate something she spent the next 20 minutes in the bathroom. Every single time. By 10am her stomach was hurting so bad she couldn't get out of bed.


Start of transfusion

At 11am her transfusion was brought up. Completely freaked Haven out to have a big
bag of blood hanging over her head with a tube going in to her chest. She wouldn't hold the cables and she wouldn't even look at it. The transfusion was to last for 4 hours.

They had to stop the transfusion at 2 hours because Haven was starting to get a fever and had some severe chills. They immediately stopped it and took her labs to check what was going on.


Haven was also very dehydrated today from all the diarhea the past few days. This caused a major depression by 1pm in Haven. She is usually allowed to be uncabled for 4 hours. Today she was not allowed to be disconnected. We had to do lots of pee testing and drinking lots of fluids. I believe she had about 64 oz of fluid before lunch - not including what was going in to her port.

The transfusion (what she got of it) did help to lower her heart rate in to the 150's through the afternoon.

By 6pm Haven was allowed to get the cables off for 30 minutes to get a shower and some walking time in. This began the most emotional part of my day for me.

We were getting undressed and she asks me if she can have a hug. Of course, she can have a hug anytime she wants. While giving me a hug she says "Mom, I feel very lonely". My heart immediately sunk. I've been with her all day and tried to keep her happy but she kept saying she just felt lonely. She can't see anyone and she has to stay at the hospital and she couldn't take the cables off, the child life girl didn't come see her today, no one came to play with her. This was hard - I can't even express how horrible this was to hear.

We got our shower and Haven came up with the idea to wear her grippy socks in the shower so she wouldn't slip again. These worked great.

After the shower we prepared to take our walk. It takes about 5 minutes to get her covered and masked to take a walk. She was walking very slow and pretty shaky. She told me she was feeling a little dizzy but still wanted to walk. We made it about 20 feet and she looked at me and said she had to get to her room - she couldn't walk anymore.

We got to the room and she just couldn't move anymore. I carried her (all 73 pounds) to the couch. She then told me her "feet wrists" were hurting. So cute. I couldn't figure out what a feet wrist was....then I realized it was her ankles. The leg bones, ankles and her neck were destroying her. Then the chills came again. She was absolutely freezing inside but about 200 degrees on the outside.

I got her in the bed and covered her with 3 big blankets and she was still shivering. After I got her calmed down I called the nurse in. She looked Haven over and called the doctor in. The doctor told me that the G-CSF would cause bone pain because it's forcing the bone marrow to start creating an immune system again and it hurts. The doctor ordered her Dilauded for her pain and tylenol for the headache.

When I left around 9pm Haven was able to sit in the bed and was trying to color some pictures the nurses printed for her to put on her wall. The Dilauded was on the way up and her night nurse had a complete run down of the entire day and reviewed it with us.

Sunset before I left her room

I called Haven around 10pm and she was getting a foot massage from dad and watching TV. Her next dose of medication is at midnight so I hope the medication kicks in and gives her a good night of sleep.

I love my baby and I can't stand seeing her go through this. Kisses and hugs Miss Haven.

Monday, July 6, 2009

Mailing Haven

HI

Please if you would like to send Haven anything contact me via email for the address. I have a few people leaving comments on her blog to send her something but it doesn't give me your email address to write back.

My email is: haveyroo@gmail.com

Thank you all!

Misty

Sunday, July 5, 2009

Feeling icky

Yesterday we decorated Haven's door. When we do our laps around the 8th floor she always looks at the other kids doors and really wanted to do her door. She kept falling asleep so it took quite a few hours to do this. She really loves it.

Haven has been feeling pretty ucky today. She has stayed curled up in a ball under the blankets for most of the morning. I did get her up to take a shower when I got in this morning. It's just a quiet slow day. Haven is moving slower now and gets small bursts of energy. But most of the time she looks spaced out and just watches TV.


Haven has been asking for her family blanket that Grandma Sing made for her. So I asked the nurses a few times and carefully washed it and was able to bring it in. It definitely brought a huge smile to Haven's face to have it on her bed instead of the white ones from the hospital.


We get Haven's daily counts and today she is in the black on a few of them. So I know we are now at the point of ugly. For everything she is going through she is definitely keeping her smile and still trying to do stuff during the day.

I started this at 10am and it's now 10pm. Haven is very sick tonight. She has been sick and down most of the day. She took a 3 hour nap this afternoon but was really achy and I massaged her legs while she slept for about an hour of that. She has been nauseous all night. I received a text from Kris that he is massaging her feet and legs and trying to get her to relax.


She started a new medication this morning on top of the other 3 she takes around the clock. Her WBC (white blood cells) will be at 0 by tomorrow and this medication helps her body to start up the remaking of WBC.


I'm just waiting for my next text to let me know she is ok and sleeping. The nets around her bed have been amazing. The nets have been great at keeping her from falling out of her bed. The sleep walking is completely insane on this medication.


Ok....I can't even think. I'm off to bed.

Saturday, July 4, 2009

Sending Mail

We've been asked over and over again if mail can be sent to Haven at the hospital or if it should be sent to her house. Well she won't be home for a few months and I know she'd love to get some mail. There are a few items that CAN NOT be received in the Oncology floor.

GUIDELINES:

1. PLANTS - no plants or flowers of any kind
2. LATEX - balloons must be mylar ONLY - no latex
3. STUFFED ANIMALS - no stuffed animals
4. CLOTHING - these can be sent to our house but she can not have them in here because she can't wear them
5. NO NUTS - Haven is allergic to nuts and can not have them near her

Note: Haven is on a special diet in the hospital - please no candy of any kind

Sorry to have rules but it's to keep Haven and other children on the floor safe.

Haven can receive cards, books, puzzles (she loves 100+ piece puzzles), DVDs, games, and stuff like that.

For the address please email me. Otherwise we will pick up packages at the house and go through them to bring them in to her!

Thank you to everyone for asking how to send her mail. She will be very excited to have it coming here. Love to all

Friday, July 3, 2009

My baby girl

Well....here is Miss Haven's new bed. As you can see, the clowns came to visit her today. She only let them barely in the room and she wouldn't move from this spot or let them in any closer.

After Kris had to tie her down with sheets to keep her in the bed during a major sleep walking incident we were ordered a "tent" that goes around her bed. It has net sides that are zipped closed when she is sleeping.

Last night was the first time she used it and Kris said it worked great. She was very active and he said the nets caught her a few times. He and Nurse Hatal watched her for quite a while. The nurse just loves Haven and her sleep walking episodes. She had a very long conversation with Haven while she was sleeping.

Haven also loves doing her walks around the floor. She is allowed to be uncabled for about 2 hours a day and as soon as those cables come off she grabs her shoes to go walking. She is so tired of being locked up in her room. Plus when she makes the rounds all the nurses just love all over her. She also gets to play in the playroom with freedom.

I like when we are not cabled because it makes bathroom time much easier!

Thursday, July 2, 2009

Locking down the sleep walker!

This morning when I arrived there were sheets tied to the rails of the bed criss crossed over Haven and bed against the wall and Kris on the other side. When I asked what was up I was told we had a bit of a sleep walking issue last night.

Kris tied two sheets in a X over Haven but not touching her. So that when she started to get it up it would push her back down and he'd wake up. He didn't get to sleep until about 5am. She kept trying to climb over the side of the bed.

The nurses and doctors were concerned and have ordered a "tent" to go over Haven's bed. This will keep her zipped up in the bed at night. When it arrives I will share a photo of what I'm talking about. But I think this will definitely work and will help to give them both a better night sleep.

Dr. Cooke came to see us today - he is our Endocrine doctor. He was off for the day but wanted to come visit Haven and see how she was doing. He gave us an update on some of her labs that he ran last week. Her cortisol was a bit off but not at all alarming, growth hormone is just a tad under what it should be, and ACTH came back great and no signs Adrenal Insufficiency.

Our friend Sophia has been showing signs of AI and is being monitored for that now so I knew exactly what he was talking about.

I also talked with Julie for about an hour the other night about her meeting with Mason's doctor. They were able to talk to Haven's doctors about her treatment and how they came to the conclusion of what to use. It looks as though Mason may start on a testing program of many of the same medications Haven has tried over the past 2 years.

Thank you to all of our friends for constantly checking in on Miss Haven and sending her cards and gifts. We have been receiving the gifts but as of now we just can't bring them in. As soon as I can give them to her I will! :)

Love to all
M

It has begun


When I came in this morning Miss Haven looked and felt great. She was checked out by her nurses and doctors and was good to go. She was uncabeled for about 2 hours and we headed to the play room. She got to play with Jessie for a little bit and worked on a puzzle.


We began her new medications around 1pm. So far by 5pm Haven has had 3 naps. She hasn't had a nap since we got in to the hospital so it's a bit of a change but we were told she'd start getting tired easy. Around 4pm the nurse brought in her mouth wash. We will get a new bottle each day and must swab her mouth with the wash every few hours.

While I was doing the first wash I noticed a mouth blister - which wasn't there this morning. Then the nurse pointed out another one. So we definitely have the mouth sores starting already. Then we had another round of fun stuff in the bathroom and she started telling me that her feet were feeling really tight. I checked them out and they looked a bit swollen. I had the nurse come in and check on her and look her over. We decided another nap in a completely dark room might help the headache.

During her sleep the nurse was asking me about her Tachycardia. Her resting heart rate was staying between 145 - 160. So they are watching that - I'm used to Haven's high heart rate but with all the medications they are monitoring it a bit closer.

I tell you it's crazy to see the counts drop each day. She came in at 17,500 on white blood cells and today is at 4,000.

Wednesday, July 1, 2009

Day 4

Today is Wednesday - I believe. You start to forget....I'm so tired that I have put my car in reverse twice now when I thought I was in drive. Luckily I have not had anyone behind me. I have an insane migraine and I know Kris is exhausted because he has not slept since the start of chemo.

Today was probably our worst day.

Everything was fine this morning until......................the floor was mopped. I have slipped twice and our doctor slipped once. Today Haven slipped.

We were required to get a pee check and we had to wait for cleaning lady to stop so I could get Haven in to the bathroom. I had her masked up and sitting in her bed until I thought the floor was dry. We headed in to the bathroom - me, Haven, all her cables and an IV pole --- mixed with a wet floor.

Haven went down - I had cables wrapped in my arms while holding her hand and the IV pole in my other hand. Her head hit the bathroom wall. I quickly grabbed her and asked if she was ok. She just grabbed my neck and said "no I'm not". So I knew immediately something was not good.

Remember Haven can't really feel pain and she doesn't know how or just can't cry. She hasn't cried tears her entire life - 5 1/2 years not one cry.

But she does have this look on her face that I know when it's bad. They heard Haven through the door luckily because I wasn't close to a nurse call button. They came in and helped me get her to the bed and looked her over.

Next we were down in X-ray. They had to X-ray her head and chest. We had to check her chest to make sure the port line was not pulled out or messed up. You would not even know how horrible I felt. I could've just died right there. I was so upset at the cleaning lady, the wet floor, the cables, the fact that I couldn't catch her, and she was terrified that something was wrong with her new port.

X-rays came back great. Nothing wrong with head or chest or port. So I was extremely relieved. I definitely won't be trying to pick her up or do anything until I have tested every inch of the floor after a cleaning.

On Wednesday the hospital has BINGO for all of the patients in the Children's Center. It's pretty cute and this was Haven's first time ever playing. They do it on the TV because all the kids are in Oncology, Pediatric floor, Intermediate floor, or something which they stay in for quite a while. The kids get a BINGO card from Child Life and follow along on the TV. They announce medical terms in the columns and when you get BINGO you call a phone number to give them your info. Everyone can hear you on the TV and they announce your name and floor. Haven WON twice! She was so excited.

Around 6:30 I gave her a shower - which she almost slipped in. So going forward I will have a nurse or Kris in the bathroom with me when showering her. It's just too hard. The shower is small and there is no grippy on the floor. Her weight and me being short and soapy water are not a good mix. She is now sitting in a chair in the shower which helps a lot.

We did a couple of loops around the 8th floor to get some walking time. She likes to do that because the nurses all love on her.

She then got some Benadryl because the Central Line is starting to itch due to the healing. This knocked her out fast.

Then I got a call from Kris around 9pm that she was doing the same heavy snoring she was the other night except now her O2 was staying around 96 and sometimes dropping to 94. I will be sure to bring this up tomorrow to our Oncologists. It may have been the Benadryl and if so we won't take that anymore. Kris had the doctors come in and check her and they were not concerned but I like to go back to our "normal" doctors and just inform them.


So it's 11pm - I'm trying to do one load of laundry. I have a huge migraine and must be up early to head back to the hospital. Tomorrow Haven starts 3 new medications and all have lots of fun side effects........

Good night.....I'm going to pretend 99% of today didn't happen! Love to all and thank you to everyone.

Lab Counts and Oncology schooling

This was my yesterday. I had a lot of schooling info from our nurse Claire. We get Haven's lab reports every day but all I know is I'm looking at numbers that are consistently going down but I don't know what I'm really looking at!

Claire sat with me a bit and went over each item and what the nurses mostly look at when watching her counts go down. We have a huge 3 inch binder with all of our treatment plans for Haven and all her medications and risks and what we are to do. It's huge - I've only gotten through part of it.

So I studied 4 days of blood work and labs. I had discussions with doctors that the CO2 level they are checking is different than the CO2 level Pulmonary checks on Haven. Dr. Paz-Priel said I was correct and that the veinous CO2 is not the same as an arterial CO2 but at this point none of the Oncologist believe Haven is in a stage to do another ABG. Which I agree but with the ROHHAD and what I know I will not be paying much attention to the veinous CO2.

So I was under the impression that her counts would go down immediately and was super happy that she hadn't thrown up or anything yet. Just diarhea and headaches. Which I was reminded by our doctors that they told me it would take 7 - 10 days before all the cells in her body would be completely dead. So.....I forgot a piece during the multiple hours of discussing all of this and I'm tired. :)

I have been informed that as of day 7 everything we have been dealing with now will change and Haven will become sicker and more tired and need even more help from us to get her through it.

But I learned a lot today and am able to look at her counts and know what I'm looking at and for.

Trying to remember Day 3

Yesterday was Day 3 of her Hi CY. She had an insane night of fighting nurses and Kris. She was biting and fighting so much. Then she finally calmed down and slept a bit. At one point Kris said she let out this blood curdling scream that had the nurses running in to check on her from the station up front. But she was just sleeping as she normally does at home. It's weird to realize what we've become customed to at home when you see the reactions of other people who aren't around a sleep talker/walker. Then add all the medication and she doubles up on it.

Yesterday was a lot of schooling for me.

First with the breathing issues I was concerned about the night before. Dr. Badgett came in to see us - he is one of Haven's constant Oncologists. We haven't seen him in probably 4 months since Haven's schedule was flipped around and Dr. Paz-Priel took over the main schedule and medications. It was nice to see him again and make a few jokes.

Then Dr. Paz-Priel came in - which I was really surprised to see. It must've been his day off because I've never seen him dress casually - which was nice to see and a bit more relaxed. We discussed the heavy snoring and he saw her videos that I sent to him. Since her O2 levels were at 100 and she has been super medicated, over hydrated, and not moving too much he was not getting concerned about it. Which I understand. But it's my job to point out any little itty bitty difference or change in her. Of course, he knows I over analyze and journal every bit of it for my records.

Then our other Oncologists Dr. Fernanda and sorry I can't remember the other one but he's very quiet. Came in to check her out. They check on her every day - multiple times. I explained my concerns of seizures and such when she snores like that. And they made a very good point - if she is going to have a seizure or anything else she is in the best place to have it. She is completely hooked up and monitored day and night.

Haven did extremely well considering everything she has been put through. I have tried to explain as much as I can to her about all of this. She has been asking questions and seems a bit sad at the answers:

When is Lauren coming to see me? - I don't know when she can right now

When can I go home? - not for a long time

If I don't have any more chemo why can't we go home? - because the chemo is going to make you very sick and you have to be with the doctors and nurses

Can any friends come to play with me? - these are the child life people. She hasn't been able to play with any of them yet

When we go home can we go to a store and get a small blanket for all my babies? - yes but we can't go to a store right now

It's hard. I believe she is tired of being locked in her room. I know she doesn't like all the cables. Her new port is hurting her a lot and she complains of itching all the time. I'm terrified she's going to pull on it. So I keep it safety pinned to her gown. She wants to know when she can wear her pretty dresses.

I know...in the big scheme of it all I shouldn't get upset at her not being able to wear her dresses but this is what I knew she'd miss. It hasn't even been a week yet!