so far, so good

Elizabeth has been doing well. I have her sleeping in the spare room downstairs so she isn't too far from me. I check on her several times during the night to make sure her breathing is good. She is not allowed to do any exercise, so no basketball yet. She can shoot, but we don't want her getting winded. Her airway is just not ready yet. She will be in AP government class in the Fall and Honors English, so she has summer work for both classes. That is how she is spending her time.

Thanks for your thoughts and prayers and comments.

Home Sweet Home!

We are home. Please pray that we have an uneventful week. We want Elizabeth to just rest and heal until her surgery next Wednesday. We will drive down Tuesday afternoon.

THank you all so very much for all of your prayers. I'll post our homecoming pictures tomorrow.

just out of O.R.

Elizabeth had her bronchoscopy/laryngoscopy this morning. The surgeon took a look inside her airway and particularly at her graft site. Please keep praying because the graft is not taking as well as it should. It should be covered in a pink mucos membrane by this time and it is only partially covered. You can still see the white rib cartilage and some granulation tissue growing on it. The granulation tissue can potentially cause a problem if too much of it grows it would obstruct her airway. Granulation tissue is a normal part of healing, but they don't want too much of it in the airway. Elizabeth will go back to the O.R. next Monday, August 4 for another brochoscopy/laryngoscopy to see if the healing is happening correctly. If they don't like what they see, she will be admitted for more procedures. For now, she is sleeping at the Ronald McDonald House and we will drive home tonight. If she feels anything different in her breathing or swallowing we have to bring her right back down here. It's a 4 hour drive, but Dr. Cotton feels that it's safe to go home for a week.

New friends

We met some new friends at Ronald McDonald House. Anwar Alrishidi and her mother. Anwar is having airway reconstruction surgery on Tuesday and will have the breathing tube and everything, just like Elizabeth. Anwar still has a trach, so this surgery will make it so she won't need it any longer. She noticed Elizabeth's scar on her throat and approached us. She asked about the scar and told us about her trach. She is very nervous about her surgery and wanted advice from Elizabeth. It just so happens that Elizabeth and Anwar are the same age, both born in September 1992. The girls have exchanged emails and plan to keep in touch.



Doesn't Elizabeth look great? I took this picture at Starbucks. She loves the double chocolate chip iced drink.

So, tomorrow she heads back to the Operating room for a bronchoscopy/laryngoscopy to take a look at the healing process. We are praying for a very good outcome so that we can go home for a couple of weeks before her next bronchoscopy/laryngoscopy.

Saturday

Today we slept in til 9:00AM, took our time getting up and ready for the day and then went to a nearby place called Bruegers Bagels for breakfast. We met a very nice family there with two adorable golden doodle puppies. We ate our breakfast and petted the dogs and then we drove around a little bit. Elizabeth didn't feel well and broke out into a cold sweat. She said she felt light headed and hot. She was not hot when I felt her, she was actually cold and sweaty. We drove back to RMH and she took a nap. She slept for 3 hours and when she got up she felt much better. She is having some pain in her neck. She is just not ready to be doing much of anything yet. She just needs to rest.
Tomorrow we will sleep in and then go to Mass at the hospital chapel at 2:30pm. That will be our day.

A nice visit

So, last night Elizabeth's boyfriend, Curtis, and his mom Angie came to visit us. THey stayed 2 hours. It was a very nice distraction for the both of us. Curtis, Angie and 2 of Curtis' friends will be going to Kings Island today. All four of them plan to stop in to visit us tomorrow.

Curtis and Elizabeth

in the garden/playground at RMH


We are just hanging out at Ronald McDonald House until Monday when Elizabeth will have her next procedure....a bronchoscopy/laryngoscopy under general anesthesia. That will be her 67th time under anesthesia. Dr. Cotton will be looking inside her airway to make sure the graft is still holding and he will be looking for any excess scar tissue. She has had trouble in the past with her airway healing too fast and overgrowing new tissue which then had to be removed with laser surgery. Hopefully that won't happen this time. The surgeons can't believe how well she is doing this time. Dr. Cotton says that Elizabeth still holds the record for the youngest LTP patient to ever be allowed to come out of sedation the day after surgery while still intubated when she was 3-1/2 years old. She had 2 ribs grafted into her airway when she was 3-1/2 and was intubated for 21 days! She was up, out of bed and in a little wagon just 3 days after surgery and we would pull the wagon around the ICU. A little later she was up walking around the unit. I have lots of pictures of that. I wish I had them with me so I could post them on here. I will do that when I get home.



Elizabeth in the lobby of RMH

Ronald McDonald House

Elizabeth has been released from the hospital and is with me at Ronald McDonald House. The surgeons said it is highly unusual to release an LTP patient so soon after extubation, but Elizabeth is doing MUCH better than expected. I will post a lot more tomorrow along with pictures. I'm too tired right now. We are both going to sleep.

Relief!

Look! No Leash!


My beautiful girl.


A self portrait.


THe last tube is out! She took a shower, used her hair straightener, even put a little make-up on. She looks great. She can't put her head back yet because when the made the incision on her neck, they cut away the old scar and then when she was stitched up, the skin was pulled a little tighter. Guess she'll never have a droopy chin.

ELizabeth hates tubes

Elizabeth wants this newest tube out! Only 11 more hours until it comes out. It is hard for her to eat. She was looking forward to real food after being tube fed for a week. She ordered spaghetti, carrots, chocolate milk and a brownie for lunch. She tried to eat but the tube is in the way. She says she can feel it even more than the breathing tube and feeding tubes. THat is because it is more rigid and the other tubes were softer. When she took a bite of brownie and swallowed it got stuck on her tube! She was so frustrated! It finally made its way down and she drank her milk. For dinner she just had chocolate milk and chocolate ice cream...both easy to swallow.

I went back to the Ronald McDonald House for dinner tonight. Different groups make dinner nearly every night and tonight dinner was shredded barbeque beef sandwiches, coleslaw, chips and salsa. Pretty good. I'm back in Elizabeth's room now just hanging out. We are going to watch Atonement together. I have a chair that pulls out to a single bed to sleep on in here. Much better than her old room. Oh, yeah I forgot to mention she is in her third room. It's on the 5th floor airway unit and it's nice. It's big and much more private than the ICU rooms. I told her moving down a floor is closer to getting out of here.

no talking today

Elizabeth had a good night and kept her oxygen sats up to 98 without the help of oxygen. She thought today would be a good day but it's just okay. Last night we had a big thunderstorm and the power went out in the hospital for 2 minutes, then the generators kicked in. That messed up the menu system, so we had to wait 2 hours to order breakfast. I left to take a nap and when I got back to her room she looked sad. She has a new thing in her nose. It's an impedence probe to measure her reflux from her stomach. She hates it. She said it is worse than the others because she can really feel it when she swallows and she doesn't want to talk. She gets it out tomorrow morning. Now her I.V is leaking and hurting her arm. She says it was supposed to be a good day and now it's not.
I'll post pictures tomorrow after she has a shower.

Extubated!!!

Yay! Elizabeth went to the Operating room this morning at about 11:00AM and was successfully extubated (tube removed). She is doing well and even talking a little. She ate a jello cup and drank some Sprite. She has ordered mashed potatoes for dinner. She is resting right now and trying to get rid of a headache. Her throat is much better, but the headache is a pain. She has been suffering with migraines since she was 7 years old. We hope to meet with the docs from the head pain clinic sometime this week. If Elizabeth does well through the night (meaning no swelling or need for re-intubation) then she will move down to the 5th floor airway unit. She will stay there for 1 week just hanging out and recuperating. Then next Monday the 28th she will go back to the O.R. for another scope. If everything is still looking good she will get to move to the Ronald McDonald House for awhile. We will just take it day by day and pray for the best.

I belong to a group called the Triplet Connection. I chat with other triplet moms several times a week. There are about 12 of us that are considered veteran triplet moms and we check in with each other ever Monday with our Monday updates. I got to meet one of my online friends in person last August. She lives in Indiana, close to the Ohio border, so she drove over to the hospital when Elizabeth was here having one of her surgeries. Well, she has been to visit us this time twice so far. She was here today and stayed with Elizabeth for a few hours while I went back to the Ronald McDonald House for a shower and rest.



My triplet mom friend, Becky and Elizabeth

Me and Elizabeth

Beautiful smile!!!

Just waiting for tomorrow

Elizabeth and I are just hanging out, waiting for tomorrow. Tomorrow she will go back to the operating room to have tube removed and a scope to look at how her trachea is healing. There will be one of two outcomes. 1. she will come back to the ICU without a tube! or 2. she will come back to ICU with a smaller tube in place for a few more days. All depends on how it looks in there.
We are pretty bored today. Last night at 11:00PM Elizabeth was moved to a different part of the ICU. They needed her room for a trauma that just arrived. They said Elizabeth is now stable enough to not need that section of ICU. She doesn't like her new room because she has all new nurses and her TV doesn't work very well. The picture is all red. All shades of just red. Like watching TV with rose colored glasses on.

She has had a lot of pain in her neck today and a headache that goes down to her right jaw. She is getting pain meds but the pain still breaks thru. She says the pain inside is like the worst sore throat you can ever imagine. It will get better when the tube comes out.

I'm going back to the Ronald McDonald House at 6:30 for a free dinner and then I will walk back up here. I will stay with Elizabeth until 11:30PM and then catch the shuttle back to RMH. I will get back here by 5:30AM tomorrow.

Up for a walk

ELizabeth got up and out of her room today. She walked 2 laps around the floor with the nurse.

Sleep

Elizabeth is sound to sleep right now. Her nausea is under control and she got a anti-anxiety med right before bed time.
She slept through the night last night. I finally got a room at Ronald McDonald House and I think I will go there tonight to sleep for a few hours. I will be up here again by 6AM She might not even miss me. I'm soooo tired. I'll be a better mom if I get some sleep and a better smelling mom when I take a shower.

Friday

Elizabeth is having a lot of pain. THey are trying out a new drug to see if it will help. She has to have a procedure done this afternoon where they re-tape her tube. She will be knocked out for it and paralyzed so they can do it without her panicking. She will need the ventilator to breathe for her. She will come out of it in an hour or two.
While she is sedated, I have to check out of Holmes on Eden and move my stuff to the Ronald McDonald House. I finally got a room there.

Sitting up in a chair

Hanging in there

It was a long day. Ups and downs. The nurses and I helped clean Elizabeth up and washed her hair with a special shower cap that is filled with soap that doesn't need rinsing. Just put it on her head and massage. Then I brushed her hair, the nurse braided it and she sat up in a chair for awhile. She ate a popsicle that was mashed up in a cup and mixed with Sprite. Then she threw up. I got her comfortable and then went back to the hotel room for a shower and 2 hour nap. I was gone from 11AM to 2:30PM. She was so happy that I came back. She hates being without me. A fellow triplet mom friend of mine that lives near here came to visit with us for 5 hours today. I think that is how long she was here. I lost track of time. She is great. Her visit was a nice distraction for both of us. She even got a couple smiles out of Elizabeth (at my expense because my sweet daughter was telling Becky about my snoring) I don't' snore.
They were finally able to feed Elizabeth this afternoon. They are dripping formula into her feeding tube very slowly. She has only thrown up a couple ounces. It's the first real nutrition she has had since Sunday. THey hope the feeds will get her digestive tract moving again. She doesn't want to be hooked up to the vent tonight. She is putting off going to sleep for the night because she really is trying to avoid the ventilator. The docs just worry that if she falls into a deep sleep, she will not breathe enough on her own. We will see.
I feel like I've been rambling. I'm quite tired so my writing is not flowing. The nurse just poked her head in to say that Elizabeth must be put back on the vent overnight. The doctors said the vent helps keep her lungs open even if it is only for 6 - 8 hours a night. They will give her the anti-anxiety drug and the fentanyl which will make her sleep and she won't care so much about the vent.

2:30AM - 4:30AM what we were doing

She is in so much pain. I don't know how well this image shoes up, but she says "I'm in so much pain" THis was after they poked her 3 times attempting to get blood and finally getting a 4th I.V. stuck in. The other I.V.'s won't pull back to give blood, so they POKED her on top of her hand and arm and then the 4th I.V. was placed in crook of her arm THis was going on for 2 hours starting at 2:30AM. Not much sleep around here. She is now resting with the help of fentanyl and verced.
RIght arm
left arm
sad, sad girl

still a struggle

I didn't get to talk much about Elizabeth last post. She has vomited 3 times today. Imagine having tubes going in each nostril down the back of your throat and then having to vomit. Not good. It is scary for her when it happens. She is asleep right now hooked up to the vent. She was able to be off the vent for the entire day today. She says her throat and chest feel like they are being squeezed and it's hard to breathe. When she got fentanyl for the pain that feeling subsided. She just got some anti-nauseas medicine and some verced which is anti anxiety and amnesia drug. Worked like a charm to let her fall asleep.

It's like an emotional roller coaster up here. I feel SOOO sad for her when she is in pain and feels sick and then for a brief time she will feel better and watched a movie with me and conversed with me on her white board. She also checked her facebook and posted a message there herself. Then she feels like she needs to vomit or she gets really hot or really cold or just gets sad and starts crying. I've cried some myself, but not in front of her. I am strong around her, but I feel so alone on this journey. I'm scared for her. I also feel a little helpless. She said she wishes she could just go to sleep and wake up all better. Sedation is an option, but not a good one. She would have narcotic withdrawals and such. So she said she will tough it out.

The anesthesiologist that was with Elizabeth during her surgery on Monday (and I also think he was with her last month), stopped up to visit her. He has talked with us and also Dr. Cotton has told him a lot about Elizabeth. He stopped up to tell her what an inspiration she is to him and that he went home and told his own teenage children about her challenges and her accomplishments despite the challenges. He thinks she is a great kid and good example to everyone.

A little better,

making baby steps in the right direction. Last night was terrible. THe nurse was not a good one. I had to talk with her about being gentle and treating patients with extra care. She was doing her job, but creating more pain for Elizabeth each time she touched her. All the other nurses have been really good. This one was young and I approached the situation like she needs to learn a lesson in compassion. I had a long talk with her and told her that Elizabeth had written things/names about her that were not nice. I also told that she is not welcome in Elizabeth's room again. She left and came back a little bit later to apologize to both of us. She really hadn't realized she was hurting Elizabeth (even though I told her each and every time she did). She said she reported our conversation to the charge nurse and then thanked me for corrective criticism. She was crying when she left our room. Gotta run. Elizabeth is beckoning me.

Prayers please

Elizabeth is struggling. She is back on the ventilator and her Oxygen sats have been dropping. She is on oxygen through her vent and they have upped the setting. Please say some extra prayers for her. She was doing so well just this morning and now she is having a little set back.

OH, also she has a problem with her intestines. They are backing up into her stomach and they may have to hook up suction to keep the bile out of her stomach. She cannot even be tube fed now because it can't empty into her intestines and so on like it should. She will only be getting I.V. fluids with a little glucose for a couple more days.

She is suffering.

feeling crummy....

Elizabeth is not feeling very well this afternoon. Morning was much better.
She has been very nauseas (sp?) and itching all over. They gave her benadryl for the
itching and zofran for her stomach. The morphine for pain might be contributing to her
upset stomach and causing the itching so they will stop that and give her adavan and tylenol instead. The nurse
used a syringe to pull back on her feeding tube and 120cc's of green bile came up. Poor Elizabeth, she
was really feeling sick from that being in there.

Doing better

She is feeling a little better today. The doctors said they can take her catheter out and disconnect the ventilator during the day. The breathing tube stays in and she will be hooked up to the vent at night. She really wants the cath out so she can get up to use the bathroom. She might even get to have ice chips today.


Here she is signing "I love you"


This is how we communicate.

I.C.U.

Elizabeth did well in surgery. Dr. Cotton was able to take a piece of rib from her right side, going in thru the old scar from back when she was 3 years old. That way she won't have an extra scar. He grafted the rib into the front of her airway. She is in a lot of pain. She keeps waking up in pain and asking for more meds. THe nurse put in a request to put Elizabeth on a pain med drip so she doesn't have to keep asking for meds.

Elizabeth has been writing notes to me on a dry erase board. She gets upset when I can't read her writing. She is very thirsty, but she can't drink anything just yet with the breathing tube in. She also has a feeding tube in place.

She is sleeping right now. Here are some pics:

Surgery has begun!

Jess, Jack and Elizabeth the day before surgery

The Dawson FIve before surgery

DR. COTTON & Elizabeth

Waiting in Pre-op

On her way to the O.R.


Elizabeth is in the two sets of hands right now.....Dr. Cotton and God. They will take good care of her. Please keep sending up your prayers for her safety and for Dr. Cotton.

one down, the Big one is next....

Elizabeth had her lingual tonsils removed on June 12 at Cincinnati Children's Hospital. The surgeons also did a little laser surgery on old scar tissue and took several biopsies of her esophagus. She is having problems with her acid reflux and because she has had it her entire life, the docs wanted to make sure esophagus is still in good shape. Good news is that the esophagus looks healthy with no ulcers. Elizabeth was in alot of pain right after surgery and she was admitted to stay over night. She did really well. The surgeon warned us that her tongue might swell and she might not be able to swallow or talk for 3 days. That did not happen. She was eating mashed potatoes and ice cream that evening and even talked to grandma over the phone! Amazing!

The BIG surgery is still scheduled for July 14. Tom, all three kids and I will drive down on the 13th. We will drive separately so that Tom, Jack and Jessica can drive back home on the 15th (as long as Elizabeth is stable). Tom, Jack and Jessica really want to be with Elizabeth during this time to support her and pray with her. They want to make sure she is "okay" before they drive back home. They will be back for visits on the weekends.

Keep praying! We really appreciate your thoughts and prayers.

Trish