A Year

A Year has passed since that night on November 3, 2010 when 2 doctors had the arduous task of telling us Jesse has a tumor. What a crazy year…

At this moment Jesse is 90 minutes from completing the antibody infusion. We’ll have 6 more days of shots.

Yesterday I left to head back to Williamsburg for a meeting and to spend time with Chris.  Her last day at her preschool is tomorrow. I really appreciate everything that Walnut Hills Baptist Church Learning Center, Jessica Sherry, Liz Tyler, and the staff have done for us. They have gone above and beyond. I thank God for her Monkey Class teachers. They were a huge help for Chris at school when Jesse was first diagnosed.

Monday she will start at Norge Elementary.  For my mother and other family, this will be much easier. Chris will get to ride the school bus and eat lunch at school. I can’t tell you how excited I am.

While I was at my meeting, the teacher from Norge called to meet with us. Since she couldn’t reach me, she tried my husband. They set up a meeting today at 2:30pm. When I was able to talk with Mike, I asked him if he wanted me to stay and meet with the teacher. His reply was that he didn’t want to have deal with traffic. I think he wanted to meet her teacher first.

I really do want to meet with her. I want to make sure that she understands I am trying to make sure Chris grows up without a chip on her shoulder from all of this. That is my biggest concern. Yes Jesse has gone through the medical part, but Chris has been as much in the emotional and mental part of this as Jesse has.

I was back her by 11:30am. Unfortunately they had moved Jesse back into room 315. I know it makes sense for staff purposes, but 3012 is nice (not 8B, but nice).

Jesse was still wearing her ladybug costume.  The antibody infusion had just started. I found out from our nurse that when Jesse heard Dr Lowe was coming to see her, she insisted that Mike put her wings and antenna back on.  She has had the costume washed since I was gone.

The resident stopped by. He told me that they will give her the rocefrin at 9am Friday. Yeah! It’s an hour infusion with an hour observation. Maybe we’ll be free by 11am 🙂

The oncology nurse had told me earlier that she was meeting with residents to go over discharge procedures. I asked her if she would add from me: Read the protocol (will save you trouble) and check medicines and time lines. Hope this means this guy was listening 🙂

This afternoon, we have just been waiting. Jesse is now sleeping, but I think she will wake up in a little bit.  Our nurse can’t wait for her to wake up. He was ecstatic she was still in her costume.

A Window And Oh A Toliet!

PICU here at CHKD is hopping. I really hope that all the kids that are having to stay will be okay. I have seen far more teary eyed parents in 2 days than I have seen in other Antibody Rounds.

Jesse slept until 7am when we woke her because her blood pressure was really low (78/33).  The rest of her blood pressures have looked great. Her heart beat, that is another story… but I digress.

Around 10am everything began for getting the antibody. First they start a saline bolus through the line they are going to use (the red one currently). Then they place her on continuous morphine, give her Tylenol and Benedryl, and then hook her up to the Antibody at 10mls an hour.

In this round, we have a shot to help rev up her immune system. Today she jumped on us when we gave her the shot, and caused a mm scrap on her leg. I have had this happen before when she isn’t being held strongly enough.

Between the bolus and starting the antibody is about an hour. As we were counting down to starting, a nurse came around telling me that I had to leave because the doctors where getting ready to do surgery on a child at the far end of the unit. The doctor wanted things as sterile as possible, which includes making visitors leave.

I guess my panicked look helped me.  I looked at this nurse and exclaimed we are starting antibody in less than an hour! I really didn’t want to have to leave Jesse because if something goes wrong, well I want to be there.

The nurse was nice and took pity on me. They hid me in the room. Two of the oncology nurses also became trapped in Jesse’s room during the sterile surgery. Jesse’s doctor for that day (not her primary) came to see us. She was aggravated that they gave her a hard time about coming into the unit and not letting the other nurses out. Her question was what if something happens to my patient?

Luckily the surgery was done in less than a half hour.

As for Jesse, I noticed that her heart rate was climbing. Around 12:30pm, we took her temperature. It was at 37.9C.  We gave her some Tylenol, but her heart rate didn’t really reduce itself. In fact we gave her a extra bolus of morphine because she said ow and from her heart rate we thought she might be in pain.

Around 3pm, I started hearing them saying Jesse is going to move.

At 3:30pm, they came in and moved us to the step down unit. This is on the same floor as PICU, but doesn’t require me to call in to get to her and each room has a bathroom!

It’s the little things.

Jesse was asleep when we moved her. When we got into our new room, the nurse took her temperature: 38.3C. This is considered a fever, and they cultured her caps. I am so glad this is happening at this point. Now we can avoid the whole line issue at the end like we dealt with last Antibody.  But I will have to watch them with the antibiotic because it is closely related to rocefrin. Rocefrin is the antibiotic they give her on the last day of being here. The one we are currently getting is closely related.

Here is my concern, we will get the antibiotic she is currently getting on Friday morning. Then they will tell me they can’t give the rocefrin for 8 hours. And I am stuck sitting here until 5pm when I should have been out by lunch.  So this is something that I will be mentioning to her doctor to make a note of for the over zealous resident who doesn’t bother to read how this all works. (Sorry last antibody really ticked me off… ).

I am not sure at this point if we won’t be discharged from here. The nurse tonight is far from pleased to be over here by herself. I think that she raised enough stink that they called another nurse in to help her. I can understand because she needs someone to verify medicines with. And calling the other side to have someone walk over is an extra hassle.

Jesse’s heart rate is around 169 tonight, and her temperature is on the rise. The antibody will finish at 11pm. Here’s hoping that her temperature comes down over night, heart rate lowers, and they fix the TV for Mike… otherwise he is going to be miserable tomorrow.

Round 5 of Antibody

We have been very busy these last three weeks.

Jesse and I have made the clinic trip at least once a week. During the 2nd week visit, I told her oncologist I was over dealing with residents when he told me that a resident was going to see Jesse first in clinic. He reassured me that this resident was really good, and lucky for my sanity, he was right. I think that she will do very well when she goes for her fellowship at St Jude.

I also told him that visit I was over all of this, but that I also realized that I will never be able to be “done.”  As this year has progressed, and from reading other stories… I no longer believe in the term “Cancer Free.”  There is always one cell or gene lurking in the corner. I just really hope that God does His magic and keeps those cells and/or genes in check.

During this time I have also had to deal with minor drama in Christine’s life. She was rewarded for negative behavior by someone outside of our situation. I was so mad that day it wasn’t even funny, but I talked with the person. And we now have an understanding that if she whines and cries, she doesn’t get a treat if she doesn’t whine and cry. I expect her not to whine and cry. I hate having to deal with these sorts of things.  That day was sadly hilarious around our house. I was so stressed out over meeting with the person, that I didn’t notice Jesse had shut Maggie in Chris’ room for an hour and half. Then I managed to lock myself out of the house.

I also was accused of kidnapping Jesse during this time. The lady meant very well.  Ferfer and I had ventured to Sam’s Club with the girls. Since Jesse is still vulnerable in my book, I put a mask on her. While her sister and I went to the restroom, Jesse and Ferfer browsed the pharmacy area. Then Ferfer and I changed places. While we were waiting, a lady walked towards me, looking at me strangely. I figured that I had my cart in her way. I moved the cart and apologized, but instead she asked me if she had seen me with that girl just a moment ago.

I explained that no, she had been with her great aunt. The lady exclaimed, “Oh thank goodness, I was worried she had been taken.” By this time Ferfer had returned, we thanked the lady for looking out for Jesse. It was wonderful of her to be concerned for Jesse 🙂

Last Friday, we spent several hours in clinic. Jesse’s IVIG level was low. IVIG is a blood product that helps fight infection. In Jesse’s case, she only needed one small bottle. For some older kids, they can need 2 or more bottles. But the infusion rate is so slow that it takes 2.5 hours for the infusion. We also needed 20ccs of urine from her…. and she has the tendency to impersonate camels…

The nurse gave her 500mls of saline at a 250ml an hour infusion rate… you want to know when it all came out? Sometime after midnight in Mike’s and my bed.

Jesse stayed up and watched the World Series that night. She had napped the entire ride home. Chris was devastated to find Jesse sleeping with us. The funny thing is that Chris is always in our bed by 2am… Jesse rarely sleeps with us. She sleeps in her bed all night. But I understand that Chris is very scared she is going to miss us leaving. And she is petrified that we will leave her home alone.

This weekend we didn’t leave the house. It was too cold in my book. I keep seeing blue, warm Caribbean water, but not until after we are a ways out from this last year. I am skid-dish to be too far from CHKD.

Today, Monday, I dressed Jesse in her ladybug costume and headed on down. We arrived late because traffic was really bad, but other than that we have had a stellar day.

When we walked into clinic, we met a hot dog, race car driver, taco, southern belle, a nurse being another nurse, a corn cobb, Elvis (her doctor… more on Jesse’s reaction later), Heinz Ward, Hawiian dancer (loved her flowers, they where beautiful.), Native American, WV Coal Miner, and many others. They had all dressed to represent a state, and where saying, “I’m an Alien from Roswell, Arizona.” Jesse heard this so much that she started saying, “I’m a ladybug from outer space.”

As for her doctor, he asked her when she first saw him if he knew who she was. She replied,  “Dr Lowe.”  He asked her for a hug, and she replied no thanks. Jesse does the same thing with the Chickfila Cow. It’s the attitude of “I like you, but stay over there.”

We drew her labs. Her lines gave us a fit. I really think that low pressure reaks havoc, but I don’t know. We meet a little girl in clinic that has had 3 CVLs put in and replaced since March! Scary! But this little girl looked great.

We met another child who has fought a Wilms tumor 4 times. It is in her lungs, and they won’t transplant and can’t operate. She is on a clinic trial. Her mom made the comment to me that she is exhausted. I can only barely image how exhausted that family must really be.  She talked about often telling her child that they just had to do this.

It made me think of Jesse and my ride in this morning. Jesse said several times that she didn’t want to stay. That she wanted to go home today. I kept telling her that we have to do this. And I asked her if whining and crying about it got her anywhere. She is so smart. She knows that whining and crying doesn’t. I also told her that we do this with a smile on our faces, because it is not the nurses’ or doctors’ faults that this is happening. And treating them like dirt gets us know where.

We met with the Hawiian dancer doctor and the corn cobb resident. (Each oncologist has their special days in clinic. If we come on days that aren’t Dr Lowe’s, then we see one of the others, who are great too 🙂 )  I talked with them about Jesse’s shots. She is getting GMCSF for the next 10 days. And strangely since after the 3rd round of antibody, the shot causes welts on her legs. She doesn’t complain about them, but they make me nervous. The doctor thinks that she is having a slight reaction. One that being on benedryl while we are here getting the antibody will cover up…

Around 11:30, we had a parade of costumes come through clinic. Channel 13, WVEC.com was there to tape it. They included Jesse in their news cast. Mike noticed they said she was 2 (I told him eh she is barely 3 🙂 ). We were so excited to see all of our child life friends. Although Gumby had Jesse slightly concerned… She kept her eyes on Gumby.

By 12pm our room in PICU was ready. Upstairs the PICU staff made a huge fuss over Jesse and her ladybug costume. I don’t know if I will ever get this kid grounded again.

At 3:30pm Jesse began the antibody. Thank God no reactions, and it has been very quiet. She stayed awake through 2 rounds of benedryl and the morphine bolus. She decided at 7: 45pm, she was finally tired enough to sleep.

Prior to her going to bed, the nurse and child life staff came by with trick or treat goodies. Jesse had a blast.  And tonight 2 nurses from 8B have come down to say hello. I really really appreciate that they came down to see her. We are very blessed to know so many wonderful, caring people.

Also last week, an article with Jesse and about clinic trials was published. I have included the link below. We are very honored that Jesse was included in the article. It is on page 19.

http://dardenpublishing.net/Media/HRHealthWebOPT.pdf

Angry isn’t a strong enough word

For how I feel. I’ll get to why in a moment.

Jesse’s antibody finished at 10:30pm Thursday night. She did spike a fever, so the nurse cultured her caps around 11pm. At 1am, they moved us up to 811, the room we spent three weeks in for stem cell transplant.

After a fitful night sleep, I awoke at 8. Jesse slept until 11am, when I woke her up for tape change. I think that was the easiest tape change I’ve had with her. She only briefly screamed when I did the cloroprep. 

At 12:50pm the il-2 was complete. Do we get to leave at that time? No that would be too polite especially since she has been here since 8 am last Monday morning, and spent the week before here. And it’s not like I don’t have a 2+ hour drive due to traffic and work to do.

The reason we have to stay is because around 8 am she received an antibiotic, and they don’t want to discharge her until they give her a dose of rocefrin. And since rocefrin is in the same family as the first antibiotic, they can’t give it to her until 5 pm. 

I am so glad that the residents think I have nothing else to do, but waste 4 hours waiting for a drug. They should have looked at her chart and figured out  how to give her the rocefrin when her il-2 was done.

The nurse was very nice, and talked with them about moving the time up. So we get the rocefrin at 3pm. Jesse and I could have been home by 3pm…

When the senior resident explained it to me ( as if I was a moron), she kept carrying on about her line. The cultures from her caps won’t come back for 48 hours and she won’t be protected after 24. I mentioned that we are bacterium and was basically told it was just there for protection and served no other purpose.

So we might get a call at 11pm Saturday to come back ( not really fevers are part of the antibody and had the “resident” read the protocol instead of knowing it all… She’d know that)

In fact I learned that the residents don’t want Jesse to go home because of the fever. Which protocol is if you have a fever and ANC, you get rocefrin and go home.

I am over residents. I know they need to learn, but I am over the hassle of having to bring them up to speed… Then dealing with the ones who think they know it all. And think that I don’t work or have another child that needs my attention. I’m tired of being treated like my time isn’t valuable by the health care system.

I was so angry that when I talked to Mike I lost it.  Jesse has spent 5 days in this prison… If they were on her side, they would be making efforts to get her out of here and not hold her.

At least while we were waiting, Elmo stopped by. Jesse really enjoyed interacting with Elmo.

So back to molding….. 

Waiting On Round 4 To Finish

For Jesse it has been a long 2 weeks. On September 26, we began the il-2 infusion. I stayed with her until Thursday last week.

The il-2 infusion last 96 hours, and for Jesse was a pretty quiet event. She finished at 5:30 on Friday evening. And since she needed a transfusion, she and Mike didn’t get home until midnight Friday night.

We spent  a quiet weekend at home. Mike went to Farm Fresh and was accused of stealing a wallet with the girls present. Funny thing was the girl that accused him fit into another group of stereotypes. Good thing I wasn’t there, I would have told her to watch the store video.

On Monday, Mike brought Jesse to clinic. This is the first admission he has been through. And being that PICU was slammed, it took much longer to get upstairs than before.

They didn’t get into our normal room until 3:45pm. Thank the Lord for our nurse. She had the presence of mind to start the 96 hour il-2 infusion before they left clinic. Even that was delayed because everyone and their uncle’s brother was there to get chemo. The nurse was able to start the infusion by 2pm.

Tuesday morning, I left Chris with Ferfer and headed out to relieve Mike. He had a road trip for a class ahead of him.

Tuesday and Wednesday passed very uneventfully. I am extremely nervous though because Jesse hasn’t run a cap culturing fever this antibody round. We got close, but then she went back down. It makes me wonder if the antibody is working? Or has her body gotten used to this? Plus everyone who has seen her comments that she is not as swollen this time.

I think to that we would have run a cap culturing fever, but each time she reaches 38 C or 100.4 F the night nurse would give her Tylenol. I am very concerned that this has accidentally covered over the fever that might have been there. Last night at 3am, Jesse’s temperature was 38.4 C. The nurse was going to give her Tylenol, but I asked her to hold off to see if the temperature would climb to 38.5C.

I really wanted to make sure that we aren’t missing needing to culture the caps. I would much rather make sure that their are no bacteria growing in her line.

Jesse’s doctor stopped by for a visit. The shirt he had on was getting comments from the nurses. Jesse just stared at him. I asked him if he went to Colonial Williamsburg and borrowed some brown paisley to make a shirt.

Right now Jesse is watching the IPad (thank you Apple and Steve Jobs… you will never understand how much that gadget has saved our sanity and entertained her this last year).

The nutritionist has come by. I am not fond of dealing with her because of the food pushing and making me feel like I don’t try to feed my kid. I don’t know the extent of personal involvement with cancer and the meds, but I sometimes feel like she doesn’t understand. Plus she has to realize the food in the kitchen here isn’t appealing to a kid who’s system is having heavy duty medicines pumped in. When we get home to normal cooking, Jesse will begin eating normally again. Since Jesse hasn’t had a number 2 since Sunday, I have a feeling I am going to have to see her again. We have given Jesse Miralax.

We will finish her infusion at 10:30 tonight. The staff keeps asking when we can go upstairs. The PICU is so busy that they have 7 kids in another area receiving care.

The il-2 will finish tomorrow at 2pm, and then we are out of here.

Jesse has been sleeping at night better this round. I have been leaving the light on during the day so that maybe we can differentiate between day and night since our room lacks a window.

The last two nights in PICU have been nerve racking for me. Mainly because the nurse I can’t stand has been on. It has made me paranoid even though we have had a different nurse. Either way I don’t trust them when she is here because co-workers complain to co-workers. And since they work together, they will stick up for one another.

We have had the same nurse the last three nights. She has been very nice to Jesse and myself. She brought Jesse some chap stick and a Barbie.

And yes maybe I should have said directly to her that night, “You bite and have a know it all attitude. And quit looking down your nose at me.” And of all the nurses, we have met she is the only one I  haven’t liked. I guess in this experience to have one nurse, one resident, and one VAT team member that you have to request to be kept away from your kid isn’t too bad because we have met a ton of people.

I will be glad when treatment is complete.  I feel horrible saying that I pray we never do this again because there are families that are having to stay in the hospital endlessly for many different health issues.

Second Round of IL-2

We began round 2 of the il-2 on Monday. Clinic was very different that day. Jesse’s new CVL fully cooperated, and we had her labs drawn in no time.

Her ANC came back around 3000 and her other counts were great.

Tonight, she is starting to run a fever. So far it has been around 37.6 degrees Celsius (about 99.7 degrees Fahrenheit). We will be taking her temperature shortly to see if she is on the rise. If this is the case, the il-2 will be stopped and her lines cultured. The staff doesn’t really like to do this because the infusion is supposed to 96 hours continuous.

Currently her skin is looking red, and where I gave her the shots has become raised again. They look almost hive-like.

Hopefully we’ll not climb higher than 100, and be medically boring.

New Central Venous Line

Thursday morning began with the alarm clocks ringing back to back, and me realizing Mike had fallen asleep on the couch watching the new HD baseball channel his grandad showed him. (that is quite the norm, and when he does fall asleep on the couch I don’t wake him)

He got up and took Chris to his aunt’s around 7:30. We decided to take her separately so that she wouldn’t see all of us drop her off and leave. I am not 100% sure of what Chris thinks the hospital is like, but I worry she views it as being all fun and games for Jesse. Chris is 4 years old, and very worried about being left out.

Mike told me she didn’t even cry when he left.

We left here around 8:20am. Our appointment time was 10:15, but traffic has been horrid lately going into Norfolk so we opted to prepare for that.

Mike decided to go the midtown tunnel route. Have I ever mentioned how much I hate that tunnel. It goes from 3 lanes down to 1. This wouldn’t be so bad if people were polite. But there are drivers who feel they are more important and cut you off. And strangely they do it with personalized plates…

We arrived at 9:30 and began our wait. Jesse did extremely well with not being able to eat or drink. By 12:15 we knew the doctor was running an hour behind. I am totally cool with this. I would much rather the surgeon take his time with a patient that needs it to live and be well.

While we waited child life brought out the sleeping mask for Jesse to play with. She had a blast playing and smelling different scents you can use when going to sleep.

I had requested a special tape be used for Jesse’s new CVL. This and skin protect. Both I brought with me in case they didn’t have it. I gave them to the anesthesiologist.

Copyright Soosan HallHere is where 20 rounds of radiation and spending time with these doctors and nurses paid off. Our friend from Child Life suited up in sterile clothing to go with Jesse into the OR. Jesse recognized our anesthesiologist, and her surgeon.  We laughed so hard when the surgeon assumed she was on verset because she was so calm and shook his hand.

When it was Jesse’s turn, our child life friend carried her through the double doors. Jesse went happily along greeting all the characters painted on the wall.

What a difference from almost a year ago when she went screaming, reaching for us. In fact another of our child life friends was with us that day, and ever since she has been pushing for kids to have the option of pre-med so they feel calmer going back for surgery. I am so glad she has done this. So glad. I really would love to keep other parents from having that visual nightmare.

Mike and I went to the waiting area. Within a few moments our child life friend came out. She laughed about Jesse wanting to hold the sleeping mask herself even as she drifted off. Everyone was amazed at how calm she was. I am too. And I am very proud of her. I don’t know if I could be that tough.

When the surgery was complete her surgeon came out to speak with us. He told us that he had run the line down through her juggler vein in her neck into the super vena cava. Then he tunneled the ports of the CVL out of the right side of her chest. He then moved to remove her old CVL. He told us that he some difficulty with it because the line had scarred in. I asked him why the CVL wasn’t placed in the juggler to begin with.

He explained that this is a new procedure in pediatrics. While this has been standard practice with adults, they have just now began using it on kids. And he is one of the few toCopyright Soosan Hall do this right now.

The reason the juggler is better for the CVL is because if she raises her arms the CVL can return to the right place when she puts them down. In the old location, there was a space the CVL was fed through that was too small. The first time the line was placed this space had to be stretched to fit the line through, and it returned to it’s normal position. Being tight on the CVL meant when Jesse raised her arms, it would pull out of her vein a bit. Instead of returning to previous position as it should have,  the tightness caused it to remain in the new place. Over time plus her growth led to the needing a replacement.

Jesse slept for about an extra hour after the surgery was done. She awoke near the end and began to cry. The anesthesiologist gave her extra medicine to make her go back to sleep. They let us come back around 4:45pm.

As we waited, the anesthesiologist, came to see us. She was really upset that she had hurt Jesse’s eyes. Turns out that when people are put to sleep their eyes can stay open, which can accidentally be scratched if equipment is inadvertently dragged over her eyes. So they use paper tape to close and protect her corneas.   When she removed the tape, it looked like a layer or two of Jesse’s skin came with it. They and I figure it was because of the Accutane drying her skin out so badly.

From the surgery she has a hole in her neck, one in her right shoulder, one where the new CVL exits, and one where the old CVL was. I also learned in the OR they don’t use the tape kits we do because everything there is already sterile. So I told Mike I would need to do a tape change on Friday. Which is actually great because it gets us back on tape change Friday. I have this strange idea that doing her tape and caps change when she is back on her weekend antibotic is a great idea. (know on wood it has worked well so far 🙂 )Copyright Soosan Hall

The surgeon did use the bandage I brought.

I asked Jesse if she wanted some apple juice and she popped right to. She also asked for crackers. As she ate, we finished paper work and waited on x-ray to check the placement of the line.

Her neck steri-strips accidentally came off.  This is hard place for a bandage because of the movement.  The resident came along and put a larger bandage over the place. I should have asked when to remove it, but I guess we’ll find out Monday.

We asked the nurses for the disposable green surgeon hats. They all had a good laugh that we wanted to take some home. Our nurse found some white ones. The resident went to another area and found the green ones. We really appreciate all the nurses in PACU and surgery. They have been wonderful to us throughout this adventure.

At 5:30pm we headed out. Mike went to get the truck. Jesse and I waited in the lobby where 3 little girls where playing. One little girl was very interested in Jesse and why she was laying in my lap. I explained she had just had surgery.

This little girl and one of her sisters gave Jesse one of their stickers. I was blown away by their generosity. One had to be 7 and the other 5.

Jesse stayed awake for over half the ride home. She even tried to sing some.

Mike and I reached Norge in time to fill Jesse pain prescription. He dropped Jesse and I at home, then went to get Chris and dinner.

Jesse woke around 9pm with some pain. I gave her the medicine. She lay on the couch watching TV. Around 1am, she woke me saying she was hungry. I feed her some dinner and we went back in the play room.

This morning, she got up and didn’t complain of any pain. She has been running around playing. The only time I had to give her medicine was when I changed her tape. She had a great deal of pain. Tape changes are normally stressful, but this was one of the top 5 most stressful tape changes she and I have endured (I do them). Ferfer was very gracious to come help me. I know it was hard for her too. Her nephew, who is 6 weeks younger than Jesse, came along. He had a blast playing with the surgeon disposable hats and mask.

Surgery Has Been Moved Up

Today when Jesse and I went for labs the decision was made to move the surgery up to tomorrow. We had to stick her arm to get labs. Her numbers came back great.

In preparation she had her peripheral veins checked via ultrasound to make sure there were no clots.  We also met with her surgeon. Luckily we were able to have the same surgeon who placed the first line. He talked with me about going through her juggler into the super vena cava. He also talked about the collapsing of her lung that occurred during the first surgery. He also talked about potential clots and the fear of breaking the clots loose.

More than likely he will not use the same access place. It sounds like the line will be move to the right side of her body.

Her surgery is at 12:15 tomorrow.  I am going to try to work with them to have her asleep or uncaring by the time she has to go to the OR.

If it does turn out she has clots in and around her neck, the CVL will then be tunneled into leg with the exit on her stomach.

I am praying she has no clots and that her surgery tomorrow will be very easy and uncomplicated.