Lessons Learned!

8-29-2001
Avri is doing so much better today. She has been going above and beyond what physical therapy has asked her to do. She has eaten real food today and held it down. Things are finally looking up. We are hoping to go home tomorrow.


Here is one thing I learned while I was up here or reminded of anyways. If you pray for patience you will be put in a situation that will require you to be patient. If you pray for courage you will be put in a situation that causes you to be courageous. If you pray for your family to be closer you will not be overcome with warm fuzz’s for each other but will be put in a situation that will bring you closer together. Pray for it all at once and you get…Well I have learned not to pray for it all at once!

Hit me with your best shot! Fire Away......

8-27-2011
I am not going to go into details, because it just gets to personal for Avri. All I am going to say is “she is hanging in there”. This poor girl is being put through the ringer. I have been trying to be positive and say tomorrow will be better, it can’t get worse right! I am learning it can always get worse. She threw up a few times last night. We had to give her a bath and the poor girl was so cold so the nurse thought she would go get a blanket all nice and toasty for her, so she could wrap up in it after the bath. This would only happen to us… “The blanket caught on fire”. I was not in the bathing room when it happened but it stunk so bad when we went in. The burnt blanket was in the sink where the nurse threw it to put water on it. All the other nurses came running because they thought the building was on fire. So in the end she did not get the warm blanket because the warmer no longer worked. Later on they decided that they needed to get another IV started but her veins are so deep and She is so swollen that the nurses could not find a spot to even put one in. So they called the anesthesiologist. She said she would come in and start one but her kids could not be left home alone, so one of the nurses went to her house to watch her kids so she could come up and start an IV. Very long night for everyone.


So by 9am today I thought we are going to start coasting now. Things can only get better (this is what all the staff keeps saying also) She did get up and walk. She did well, she was happy to see her cousins and their parents. She got a small nape in. Then the Belly ache came back and we were right back to last night’s issues again. Just when you think “I thought things were not going to get worse”…The power goes off. Avris stuff is all running off the emergency generator so for the first couple hours it’s not a big deal. It’s time to get Avri up, she is standing there and next thing I know I am covered in vomit. She shot from a good 5 feet all down the front of me. Thank goodness she has not eaten so it was mostly just water, (or I would have shot back) It was literally dripping off me. My shoes were filled. The nurse says “go down the hall take a shower and throw your laundry in the washer”. So I walk down the hall all wet and drippy just to turn around and walk back…ummm the power is off. I ended up spraying myself off in Avri’s bathroom. Maybe I am delirious from my sleepless night but all I can do is laugh about it. Matt was kind enough to bring me café Rio. (Everyone knows the dressing makes the salad) …well they put the wrong dressing with it. It was all I could do not to cry! Last night I ended up with a broken rubber band cooked into my cafeteria food dinner. GAG! So I was looking forward to something not from the cafeteria. It’s funny the stupid things that push you over the edge. I laugh when I get a vomit shower and when the nurse catches a blanket on fire but I have to contain the tears when I don’t get my ranch dressing. I need some sleep or a therapist!

8:3opm Friday, She is hanging in there, but would rather not be at this point. She is just miserable.

Friday day 4 update

8-26-2011


I think Avri is getting better. I think she had a better night last night than the night before. If you were to ask her “things are not getting better” So far we have been on a roller coaster today. One minute she is great the next she is crying. They call this the “Princess in the pea day” She can’t get comfortable no matter how she lays, she feels like she has something under her back. Her lungs are sounding better today and her fever is down. Physical therapy came in around 9:30am and got her up. She was able to walk about 20 feet out and back. She was cruising. “I think she thought she was going to be able to get back in bed when she got back" but to her disappointment they made her sit in the chair for 20 minutes. The nurses gave me permission to let her send a few people a text just to keep her mind busy. She tried to get up and get back into bed a couple times but she made her 20 minute goal. She crashed as soon as her head hit the bed.

As far as the rest of her care, she came out of surgery with an arterial line and three IV’s. Her arterial line was taken out yesterday. 2 out of the 3 IV’s failed today, so we are hanging on to that last line (keeping our fingers crossed it won’t blow) it’s not looking good. She is drinking ok, but her stomach won’t wake up so she has only had 2 small Jell-O’s to eat since Monday night. Her body is hanging onto a lot of fluid and she says she is feeling very bloated. She really is looking good despite all she is going through. She will be rolling down the hall in about 45 minutes to a regular patient room. She will be happy to have her phone back in her hands.

We were expecting her to be in the ICU possibly the entire visit. (I guess a lot of it has to do with staffing) she can have visitors in her regular room. (Any age) if you would like to come see her just keep in mind that she is still in a ton of pain and pretty drugged up. She is very slurred and sleepy. She will not want you touching her except to hold her hand. She still needs a calm quit room. She will not want anyone trying to sit on her bed or bumping it. She is at Shiners in room 15. Use your best discretion considering the things I mentioned. We are still on track to be home Tuesday. She may need a couple days to crash in the comfort of her own home. I will keep you all posted.

Day 3 back surgery 2nd update.

2nd update for Thursday


Avri is doing much better tonight than she was when I first saw her today. She had asked for her sisters a few times so Matt brought them up as soon as they got out of school. As funny as I have tried to be… I have not been able to produce the smile that seeing her sisters did. Avri held out her hands and just wanted to hold their hands and hear all about their first days of school. Of course the big question they all want to know is if Avri is taller than me now. Avri says “yes…I am so much taller than her that I look down and see the tops of her shoulders” (she was on a step) although I think she may have been looking down on me just a little bit when she stepped off onto the floor. I am sure as soon as she can walk the first thing will be to go measure. Hattie asked her if she felt like this surgery was worth it to be straight. Avri said “ummm NO …because now I can’t even move!”

As for me…I am doing good. I have been told “I am a strong woman” a few times. I have to say…I am not stronger than anyone else out there. We all at different times in our lives are faced with different challenges and they are all equally as hard. I look around this hospital. I see kids missing body limbs, some are bound to wheel chairs and some are in full body casts. I think how temporary some of my elements with Avri are and I am so grateful for the good times in between the trying times. I look around up here and think to myself “I don’t know how that mom does it.” I truly have it breezy compared to others.

I walked the girls out to the car tonight. I told them all goodbye, gave them hugs and kisses and put them in the car. By the time I had hugged and kissed Matt I looked back in the car at them and they were all silently sobbing. Giant tears running down their faces. My heart sank and the tears welled up. Then I switched it off told them to be brave and that I would make grandma sleep up here tomorrow, they all laughed and found comfort in that thought. As I was walking back in the hospital I thought to myself how many times today I have shut down the tears and pulled myself back together. “I think I am part robot” and I guess today I am grateful for that. I also know I draw strength from my father in heaven. Honestly in this situation there is no other explanation. I think of the poem of the foot prints in the sand. I like to think of 2 sets of prints I would rather walk side by side and just draw comfort in knowing I am not alone. I am sure those times when I want to fall to the floor because my breath has been taken away, my heart hurts and my legs are about to give out some one catches me and carries me until I recover. It is an unexplainable feeling. I can say I have tried to walk alone in the past. I have wanted to walk alone and I certainly thought I would never be carried. I personally believe life was not meant to be lived that way.

Day 3 back surgery

8-25-2011


. I walked in at 8am today thinking Avri would be in here asking for some breakfast and laughing. Nothing like that was going on. She was crying and paler. The nurse said she spiked a fever last night and that they thought her epidural had slipped out of place because they could not control her pain with it. Her bandage is just getting soaked with fluid. Her lungs have diminished (nurse’s words) she said that it meant she was getting fluid pockets on her lungs. They think Avri won’t breath right because it hurts to bad so she is only taking tiny, fast, shallow breaths. So they have been doing breathing therapy with her (they have a machine that they put on her face that blows air into her mouth. She has to push it back out forcing her to take deep breaths. They say that they think it is still high enough in her lungs that they may be able to stop it from settling in.

On a good note she is still being her strong obedient self. They have scheduled times with physical therapy to come in and help her sit up. She was in so much pain. Physical therapy came in and said they were going to sit her up. She never questioned them. She did everything they asked her to do. There were a couple times that her eyes got huge. Her heart rate would sky rocket then drop. They would tell her “stay with us” she would look at them and carry on. The dressing on her back was more saturated than they thought so they changed that while she was sitting on the bed (which took 10 minutes). Then they got her in a chair. She asked me in such a quiet whisper a couple times if she could please get back into bed. I explain how good this is for her even though it may be painful. She accepts it and continues to push through. She sat in her chair for the full 20 minutes. When they stood her up to put her back in bed the dressing was soaked again, so she had to sit on the edge of the bed again so they could put more dressing on her back. They said she sat up for a total of 40 minutes instead of the required 20. (Painful for her but very good for her lungs and the recovery of her back)

It’s been a few hours since I started typing this post. Avri’s pain is being managed much better now. Her epidural is leaking so they are giving her more oral pain medication now. I have been rubbing lotion on her feet and the nurse just helped me paint her toe nails all fancy. Everyone is doing their very best to keep her comfortable and occupied when she is awake. Her fever finally did come back down with the second dose of Tylenol. She is continuing to work on her big breaths as well. She has produced some pretty good coughs (which make the staff very happy) not so much Avri as the coughing is painful.

Back surgery day 2





 8-24-2011




She looks like she got her lips injected. She is puffy from being face down durring the surgery. she is hooked up to tons of stuff. At this point she has a big ball of tubes and wires that are all bunched up.



I walked into to the ICU around 8am today. To my surprise Avri was talking about the time I waxed her armpits to all the nurses. Apparently she had just had some tape ripped off her leg and they said it was a partial leg wax. I had to explain myself; yes…I did wax her armpits once. We mutually decided it would be better than me trying to shave her every other day in the shower during swim season. It was then her decision to just go all natural and do nothing. She has been trying to shave them herself lately. Needless to say she was feeling well enough to talk to the nurses about that one time.



When I was done defending myself I asked her how she was feeling. She said (in a weak but upbeat as possible voice) “I feel great” she looks good. I noticed her coloring was better and she was not as puffy. I watched as they rolled her over onto her side. It looked as though she had some good practice through the night. She stiffened up a bit (although it’s hard to tell because I am not use to her being straight) let out a small ouch and then relaxed again. I asked her if she wanted me to take a picture. She said “yes, and then send it to your mom and tell her I love her” I took the picture and I am standing there trying to talk to her and she says “did you send the picture and message to grandma yet?” So I had to leave and go send it. (There are no cell phones allowed in the ICU)



They said she would look thinner after being stretched out and straightened up. look how straight she is.  This is her first few seconds of sitting up for the first time.  



The physical therapists came in at 10:00am to sit her up for the first time. The goal is to just have her dangle her legs on the edge of the bed for 3 minutes. They had 4 people around her to help lift and guide her to the sitting position. She had a hard time relaxing and letting them do the work for her. She kept saying “do you want me to help?” They say back “no, no, no…just relax” They got her upright with ease. She never once made a sound or complained. As soon as they got her upright her face started to drain all of it color. (They warned me that she would more than likely vomit and pass out) We had the bucket ready and they were supporting her the entire time. One of them asked if they could brush her hair. To my surprise she said “yes”. She hates getting her hair combed or brushed. The next thing I noticed was how straight she was. Her front looked so flat and the huge S in her back is gone. It tugged at my heart because the bend in her back has become a part of her personality or something. It made her look (not like her anymore) I held it together long enough to take a couple pictures and then show them to her. I was supposed to be keeping her focused on something. She is going more and more pale as the minute clicks by then ….going, going…her blood pressure and pulse spiked then dropped her eyes start to roll and they lay her back down. It took a few prompts for her to breath. She is just laying there wide eyed not saying a word as the color slowly returns to her face. Then she says (almost in a whisper) “mom go send the pictures of me being straight to grandma” Phew…I can take a deep breath, I have a really good excuse to step out. I take the opportunity to go have my breakdown and then recompose myself before Avri has a chance to lose it with me. She sat up again a couple hours later and did even better. She never did throw up or pass out.



This is something you have to see to beleive. She is so straight.



I have been asked what it is we do differently with her because I do not baby her. All I can say is “ I have never let her give up and I always make her finish what she started no matter how long it takes or how difficult it is” other than that I don’t think I play a part. She just came into this world with some unbelievable gifts to touch everyone she is around no matter the cost to her.



I was able to talk with one of her doctors and he said she was looking better than could have ever been expected. He said all her past surgeries must be playing a part in her bravery and strength. He said he could not believe the little amount of blood she lost. She will not be coming home any sooner but she sure is making it easier on the heart strings.

She is done with physical therapy for the day and will just be resting. She is pretty tuckered out. Those 2 three minute sessions were exhausting. Hopefully she will just sleep for the rest of the evening in between being turned every two hours.



She did come up with a new signature hug. Matt was leaving. She went to hug him and realized she had to many tubes in her hands and arms and that it hurt to move her arms like that, so she pinched his ear lobes and said that was all she could do.



Day 1 back surgery

8-23-2011


After months and months of anxiety and the unknown Avri’s back surgery date has come up. I got a call Monday from Shiners Hospital. She said “we had a problem today in surgery with a kid’s antibody and thank goodness it was a smaller surgery, because if it would have been Avri’s we would have lost her.” She then apologized up and down but said we needed to come up with in the night to get Avri’s blood tested so they could make sure they had the exact match for units of blood she would need. They wanted to make sure there was nothing funky going on with her. So we made the hour drive to get her blood tested Monday night. After 4 pokes and a lot of manipulation of the tube the nurse finally got an IV placed in Avri’s arm. I told them I would flush her IV at home so they would not have to poke her again in the morning. We finally got home some time after 11:00pm. I could not help but think “this is not a good sign as to how things are going to go tomorrow”

4am Tuesday rolled around way sooner than any of us would have liked. Matt, Avri and I arrived at 6:00am. Avri has a touch of excitement mixed with a lot of anxiety. I want to turn around and run away and take her with me. It is hard to know this is not a life or death surgery so in a way we are choosing to do it. In the back of my mind I am thinking “I could lose her, 25 years of slowly going downhill and a big hump in Avris back is better than ending things now” but I have always said “if you can’t live life to your fullest potential then what is life worth”? Avri has been given the opportunity to improve the quality of her life by having her back straightened out. I need to support her in that. She has gone through the last few years of life hearing “Avri stand up straight”,” Avri sit up straight” We have done back exercises that frustrate the heck out of her. She gets side aches because she can’t get the full breaths that her body needs when she exerts herself to heavy breathing. She has also complained of back pain. This surgery is for her and I am going to see her through it.

She is given valium to relax but she still seems scared and anxious. We are taken down to “the basement” (seemed like it might be creepy) they had a photographer that took pictures of the curve in her back. They take pictures for the parents to see the before and after. They also use them for clinical studies. When we got back to her room she was given more meds to relax a bit more for the ride to the “holding room” I did not think it was working until they started to wheel her bed down the hall and she said “ya, this spine I have just doesn’t work very good, I can’t even walk with it” We all laughed out loud. I knew then the meds had kicked in. We were taken to the holding room for about 5 minutes and then we said our emotional goodbyes.

Matt and I were verbally prepared for this surgery. We were told this surgery was going to take about 8 hours. They use a machine during the surgery that takes the blood that is being suctioned up spins it, cleans it and puts it in a container, then is put back into her body. This process damages the cells so usually they still have to give more blood. They told us they had to units of perfect match blood waiting for her. They said she was going to come out of surgery in a lot of pain. She would be throwing up, tired, not herself, crying list goes on and on of what to expect. They repeatedly tell us “This is a big surgery” “this is the biggest surgery we do here” I wonder a few times if they are actually trying to talk me out of it, but then they end in “but it will be totally worth it”

We have been saying for the last few months. “we must have a big blessing in store because it has been one thing after another with home life. I was talking to a friend and said “I feel embarrassed to even talk about all that has gone wrong and all the stressors because it seems made up, I mean really….who goes through that much?”

Avri went in for surgery around 8:30am we got a call from the OR at 11:00am. “Avri went to sleep beautifully, she is doing wonderful. We are starting to put in the implants. We will call you in 2 hours” 12:45 they call again. “The hardware is all in. She is stable and doing great. We are closing. She will be out in 45 minutes.” They call again at 1:30pm “She is in the ICU; we will call you in about an hour to come down and see her. ….The surgery only took 5 hours. (Our first big blessing)

The surgeon came walking in the room around 2:00pm. He said “everything went so much better than ever could have been expected” “If all my surgery’s went this smoothly, I could do them every day for the rest of my life and be fine, there are some of these surgeries that turn his hair gray” He said “She is a dang strong girl” he said they got her straighter than they thought they would be able to. He also told us that she did not bleed as much as they expected so she did not need any blood other than her own. He placed 2 rods, 20 screws and 2 hooks. They did not change the amount of vertebra they were working on. They did not cut any corners but the lack of complications and everything just falling right into place took 3 hours of planned time off the clock. He did say for such a big girl this was all very unusual. (But great for a change) You can imagine my relief. All I could think of was that big huge blessing that we were waiting for and seeing it right before me now. I was hearing all these doctors saying how impressed they were, how this could not have gone any better, how strong Avri is. This is just what we all needed.

The anestisiologist comes in next. She is a very matter of fact lady but very kind. She said how nicely she went to sleep and how easy she came off everything. She tells us about the epidural they placed in Avris back for pain and about the pain pump she is on. She goes on to tell us that Avri was already awake and talking. At his point she starts to get tears in her eyes and she is choking up a bit. She says “I was telling her about the pump and explaining everything to her. I told her I was going to go talk to her parents now. Usually kids just say thanks all jumbled up but… As I was walking away she said “please tell my mom and dad how much I love them, then she closed her eyes and went back to sleep.” She said in all the 20 years of doing this nothing like that has ever been said. She said she was so unbelievably touched. She was so emotional at that point she got up and walked out without another word.



Matt and I went in to see Avri about an hour later. She was awake but groggy. She was very alert and knew what had happened. She never once cried or complained. She said she was good. It was a huge relief to see her moving all her fingers and toes. These surgery’s usually have monitors that they place on the head for spinal cord injury warnings, because of Avri’s shunts this part of the monitoring was not used. It was not a for sure thing that damage had not been done until she moved. We only stayed for about 5 minutes as the care team said to let her rest. I was in and out for the remainder of that evening. She had asked to watch a movie; she asked for some chap stick but for the most part was quiet and content. She did keep asking if they could roll her over because all this laying on her back was killing it. Around 10pm they rolled her for the first time. I was advised not to be there for it as it would be hard on me making it harder for her. If I could imagine the scene…She would let them roll her without complaint, if I was there I would have cried and lost it. She would have cried and lost it with me. I tend to have that effect on her. Against where my mind and body wanted to be I stayed in her room down the hall. I woke several times in the night thinking she needed me, hearing the door open and footsteps coming in but it was all in my head no one came, so I stayed where I was told to stay.

She is going in for back surgery

            This is purely just informational and may come as a shock to some.  I am sure by now most of you  already know though.  Avri is having back surgery. She has been having problems with her back for a number of years now. She has days where her back is stiff and sore but the most noticeable thing for her and us as parents is her posture (more so the hump in her back).  After noticing I was not the only one telling her to stand up straight I took her to a back specialist. This doctor was very quick to want to do surgery on her. I freaked out and got a second opinion from a spine specialist at Shriner's hospital. "they are supposed to be the best spine specialists in the world" this surgeon agreed that she needed surgery. This appointment was back in January and we have been waiting for our date ever since. We got a call three days before vacation that she would be going in August 23rd.  
             This surgery will straighten out the big hump in Avri's back the medical term is "Kyphosis".  She will be having rods and screws placed through out the length of her spine. They say she will gain at least 2 inches of height.  "pretty crazy to think she will come out of this being taller than me"  Although Avri is "so excited" we are very nervous. This is going to be a very scary surgery and a very tough recovery.  In talking with her surgeon. My understanding is that there will not be an opportunity for visitors while she is in the hospital as she will be in the ICU the entire stay. She will have an around the clock nurse as well as many appointments with physical therapists.  Avri will be in the hospital for at least 7 days and she will be out of school for at least the first month. I will do my best to keep everyone posted on what is going on with her through this blog. I have to say on my part that "phone calls"... I know have the best intentions, but do make my emotions run much higher.  As I do love each and everyone of you that has concern for my daughter and the rest of my family.  Please when this day comes keep her in your prayers, Pray that I will have the strength to support her and help her through this and know that through every ones prayers and faith we will be fine! If all else fails check her blog for updates!  I will not be leaving Avri's side to take calls (aside from family)....no offense!