April 20, 2010 - Day 0: Transplant Day - How it went...

Before the clock rolled past midnight to April 20, 2010, there was the anxious day before that we had to get through first.  I left the hospital Monday afternoon to spend the evening with William.  On a personal level, I know I've been nervous, trepidatious, restless, and then some about the transplant.  So much so that I wasn't sleeping well at all and my stomach was giving me regular fits.  If it was affecting me this much, I cannot begin to guess how much it was weighing on William.

He has never been through any kind of surgery at all.  That fact alone I'm sure made the upcoming procedure seem all the more nerve wracking.  To top it all off, William cannot stand to have his blood drawn.  It makes him excessively nervous and agitated.  I can't blame him for that whatsoever! I can't stand getting small shots much less having my blood drawn.  This is the reason why we asked he be put to sleep before they attempted to give him an IV, something we have assured him about, too.

The evening before the transplant, I found it very difficult getting William to go sleep.  He finds solace in occupying himself with his games, and that evening he very much resisted attempts on my part to go to bed.  I believe he was entertaining the idea of staying up all night since we had to leave so early the next morning.  When Chase has to go back into the hospital for long stays, we have let him stay up all night before, but this was different, so sleep was most definitely on the agenda.

William wasn't the only one having problems winding down though.  I wanted to make some kind of ribbon to wear on transplant day and headed upstairs to see what green and orange materials I had at my disposal - more than I imagined to my surprise.  I guess that's one advantage to buying stuff that "looks good" at the time or buying it with a project in mind that never saw the light of day.  Not only did I have just the right papers and ribbon, but I actually had pin hardware, too! And here I was willing to be satisfied with a safety pin!  I ended up printing out the logo and then glued it onto paper and backed it up with green and orange paper, sandwiching the orange and green ribbon as I built up the pin.  I was a bit peeved that I didn't take more time to cut out nicer circles, but since this was completely unplanned, I didn't want to pull out my "hardware" to cut the perfect circle.  I was very pleased with the outcome and it gave all of us something to wear to show our pride in what William and Chase were doing.

By the time I finished the pins, it was nearly one thirty in the morning.  I finally managed to get William off his games and talked him into sleeping in my room.  He has a loft bed and truthfully I was a bit worried that it would be more of a challenge waking him up at 4:45 and getting him down from there than if he just spend the night in my room.  I've noticed that talking tends to help William expel his anxiety, so once we were ready for bed he talked and talked until at least 2:30 in the morning.  I tried many times to coax him into going to sleep, but his mind was still going a million miles an hour - poor guy!

When my alarm went off just after 4 am, I got myself ready (quick shower, clothes, and a cereal bar) before trying to wake William up.  Actually, all I wanted do was turn off the alarm and go back to sleep. I never get enough sleep as it is and to top that off, I am SO not a morning person.   Working off just under two hours of sleep wasn't the best way to start my day, but thankfully adrenaline started kicking in and helped to keep me moving in a forward direction.  All I wanted William to do was get up, brush his teeth and hair, change his clothes, and get on our way.  Since his surgery would be first thing in the morning, he wouldn't be allowed to eat or drink anything until afterward.  I figured if I got him up any earlier then he may start to feel hungry.

It was a good thing I convinced him to stay in my room because getting him up and out of bed took far longer than anticipated.  First Maya came bounding into the room and hopped up on the bed next to William.  I think she knew something unusual was going on and that William needed her.  She remained focused on him the entire time, even cuddling up against him.  She definitely has a calming influence on him - all of us for that matter.  William just ran his hand over her back while he ranted about how unjust it was that the surgery was scheduled for such an early time.  Didn't they know teenagers needed more sleep???  Knowing that he was nervous about what would be ahead of him, I let him fuss and complain. After about 20 minutes, I finally got him out of bed and then we were at last able to leave.

Since we were unsure how the day would go and whether William would want to hang around the hospital, we took two cars.  That morning, William vowed that he wanted to come straight back home after his procedure.  I knew how much Chase wanted to see and talk to him, so I was praying that William would change his mind about that.

We did arrive late by 20 minutes, signing in at 6:25.  The day surgery room was already about half full, most of the patients being under two years of age.  I have no idea what kind of procedures they were having and why there were so many babies, but I absolutely recognized the bleary-eyed look in every parent there!  William was registered and brought back to a day surgery pre-op room for vitals and prep not long after seven.  He didn't mind being weighed, having his blood pressure and oxygen levels checked.  He also didn't mind the overview of the procedure that Dr. Chiang gave him either.  I think he was more preoccupied with the woman (girl) who came in with Dr.Chiang.  She was to observe the harvest procedure and William and I both agreed she looked no older than 17!!  I thought she was his daughter when they first came him, especially because she was dressed quite casually.

Anyway, all of the pre-op procedures went fine until two nurses came in to take blood! Ugh!  This was not on the list and we were NOT warned about it either.  I thought for a minute this would be the straw to break the camel's back because William was on the verge of refusing.  They had to have his blood work so they could establish a baseline chemistry prior to harvest.   If the post harvest chemistry proved to be way off, then he would receive a transfusion if needed.  Well, William crossed his arms over his chest and wanted them to use one of the ten vials of blood they took from him two weeks ago.  Why they couldn't use one of those was beyond him and he saw absolutely no reason why they needed more blood from him.  Thankfully, the nurse who came in to draw his blood was the same woman as before.  She did a great job with him and he even admitted that it wasn't painful and over with quickly because of her.  She answered all of William's arguments and he finally acquiesced.   He hated every second of it, but his arm unfolded and she quickly drew the two vials needed and then it was over.

The pre-op nurse came back in the room and asked if William would want any medicine to calm him down a bit before they took him to surgery.  I didn't even let her get the whole question out of her mouth before I enthusiastically nodded my head.  I about told her to make it a double, too.  What they brought him was, to my eyes, a pittance of an amount when you consider his height and weight (5'7 119 lbs).  In my opinion, it had little to no effect on him, too.   I left him at that point to change into the gown they left for him.  Add something else to his list that he wasn't happy about - needing to strip down to his birthday suit!  Even the socks had to go.  I took the chance to run to the bathroom while he was changing and came back to find about four people waiting outside his room.  Tentatively, I knocked on his door and asked if he was ready.  He let me in and I had to bite my bottom lip to keep from laughing.  He had the top of the gown over his shoulders, but his arms were no where to be seen because he overlooked the arm holes.  I had to help him with that and tie the top of the gown at the back of his neck.  Once that was done and his hair net on, they wheeled him out of the room.  I kissed his cheek and told him how absolutely proud I was of him and then returned to the waiting room.

Since it wasn't even eight in the morning, David and I went down to the cafeteria to grab some food.  I knew Chase and my mom wouldn't be awake and moving around yet, so we stayed downstairs for a while to give them time to sleep.  We were told William would be in surgery for about 45 minutes to an hour, an hour in recovery, and then brought back to the day surgery room for us to get him.   Even though it was rainy outside, David and I both went out front and tried to get pictures of the transplant flag.  Any time a child is receiving a transplant, they fly a flag outside to let everyone know.  Sadly, between the rain and the wind, the flag was wrapped several times around the pole, so my picture wasn't the best.  The next time it is nice outside and the flag is flying, I will get a better picture of it.  Personally, I think it's pretty special to have them fly that flag.  Even if there are others sharing the day with you, it's important  that everyone knows that something life saving is going on that day.

Around 9, we headed up to Chase's room.  The first person I saw after going through the double set of doors into the Bone Marrow Transplant wing was Rebecca leaning over the counter of the nurse's station signing a banner for Chase!  Monica's mom made banners and signs for Chase and another patient to commemorate their transplants.  All of the nurses on duty who knew Chase signed his banner, even nurses from the regular Aflac wing.  I didn't tell him about it until she came in later that day to hang it up.  I thought it was so sweet of Jeannie to make it and such a great gesture to let the nurse's personalize his experience.  But I will say that of everything that could have happened that day, having Rebecca there was so special!!  If you don't recall, she's Chase's primary nurse and we've known her for over a year.  Not only is she a truly outstanding nurse, she is an incredibly special person, too.  It warmed my heart to have her with us on this day of all days.

It was especially nice since Chase's two other associate nurses, Marlene and Robert, would not be there.  Marlene is on evening duty and Robert is no longer a full-time Aflac nurse.  Yeah, that was miserable news to get, but at least it was from the horse's mouth directly.  (No offense Robert if you read this.  You know we love ya!)  He came to visit Chase during his first week on BMT to let us know that he had applied for a job as an adult BMT Coordinator in the building just across the street.  You certainly can't blame him for the opportunity to not only get a raise (and in this economy) but to be on a more normal schedule, too.  He did say that he's not completely leaving bed side nursing because if he ever decided to come back it would be exceedingly difficult to get a position if he left completely.  I'm not sure how often we may see him as a result, but if we're lucky we may be graced with "Robert - Miracle Worker" before Chase finishes his stay here.  This just means that Rebecca and Marlene and whoever else they can recruit will have to harass Chase all the more.

But back to transplant - My mom was already awake and Chase woke up once we go there.  The first thing he asked was, "Where's William?"  We told him about when he would be out of surgery and that Dr.Chiang would come see us as soon as he was finished.  One little piece that I forgot to add earlier was that there were two doctors extracting marrow simultaneously from William.  Dr. Chiang told William that he wouldn't tell him who was doing which hip because if one hurt more than the other, he wouldn't know who to blame.  I thought that was funny, but I could tell William wasn't too amused.   When Dr.Chiang came up to see us, he reported that everything went perfectly.  William did not need the large bandage, so his entry points were only covered with a skin glue substance, and he did not need any fluids either!  Yay!  They also took the maximum amount they could, just over 1 liter!!  I think my eyes kind of bugged out at that point.  When you consider how much is in a 2 liter bottle and they took half that amount from William??  That's huge!

We did have a great visit with Chase before we were called to get William.  Rebecca came in a couple of times to let us know that the marrow would be on its way up soon.  I was hoping they would start it before we had to go get William, but it didn't arrive upstairs in time.  However, the cleaning process seemed to go fairly quickly since they both have the same blood type, which was something I had not even considered.  Before we left, Chase was getting himself outfitted to do his 10 daily laps around the nurse's station.  Monica sent over a brown cap, with a large blue bow that they insisted he wear, so he put that on along with his Green "Bling" UR Protected glasses.    The glasses are actually a green glitter adorned pair of sun glasses he received as part of a St.Patrick's Day package when he was admitted last month.   Since Chase likes to kid around with Rebecca that she is so ugly looking at her burns his eyes, I helped him come up with the protective sun glasses since she threatened to make him wear them on St.Patrick's Day.  Instead of UV protection, these have UR protection (Ugly Rebecca).  He just loves trying to get a rise out of her!  To complete his ensemble, I added the button I made to the front of his hat and then he was ready to go.

Right before Chase could go for his 10 laps and model his look for the nurses, I was called by a nurse from Day Surgery.  William was already back there and waking up, which was probably thirty to forty-five minutes earlier than we had anticipated.  I rushed downstairs, completely forgetting his clothes in the bag back up in the room, so I called David to bring them down once he was done with Chase's laps.  William was extremely groggy and feeling no pain thanks to morphine.   When I told him what time it was, he immediately became alert wanting to know how long he had been asleep.  I told him that he would feel as though no time had passed, so he was shocked to learn that although he was taken to surgery around eight that it was now almost eleven in the morning.

He didn't even remember succumbing to the anesthesia, which was a great thing to hear.  However, the message to NOT put an IV in his arm until after he was out apparently failed to reach the right person.  In spite of feeling loopy from laughing gas (as he called it), he distinctly remembered saying, "Ow, ow, ow," when they put the IV in his hand.  Argh!!  He didn't seem too torn up about it thankfully, but I wasn't happy that our wishes weren't followed.  I suppose they believed that since he's 14, he wouldn't need to be asleep first - WRONG!  Age doesn't make a difference if getting an IV makes you as upset as it does him.   Oddly enough, in his other arm there was what appeared to be an IV, but the nurse told me that here was no needle, it was only plastic.  I could clearly see that it went under the skin, so I wasn't sure that that was about.  They took his blood post-surgery from that line though instead of poking him again.  Thankfully, the tape holding the line down caused him more discomfort when she took it off than taking out the tube itself, which turned out to be not very long.  He didn't like the fact that she applied pressure to stop the bleeding, but it was over with before he had a chance to complain much.

Oh, the joys of morphine!  Whatever he was thinking came straight out of his mouth!!  Luckily, the room was only occupied by me and David when he was at his most verbose.  But let me tell you that when he decided he was ready to go, he had no problem ordering us to get the nurse in there who had to call someone from anesthesia to check him out first.  All the guy did was stick his head in the door and ask William if he was okay.  Heck, I could have done that!!  They probably charged us for that, too.

Finally, they had a wheelchair for him and we were off to the BMT wing.  William was definitely in pain if he sat the wrong way and sitting in a car for the ride home would have caused him more pain.  So we padded the bottom and back of the wheelchair's seat and brought him up to Chase's room where he could lay down on the bed and rest.  By the time we got up there, William's marrow had been brought up and was already flowing into Chase!
I hate that I missed the actual beginning of it, but Brittany from Child Life said she took pictures and would bring me copies as well as send them to me via email.  My mom got some pictures, too.  When we got in the room, Chase was still conscious enough to greet his brother and get a few quick words in before the Benadryl claimed him.  William succumbed to exhaustion and fell asleep as well.  They both were out for about 4 hours!

Granted, I wished they had been awake with each other during that time, but simply having them in the same room on this day of all days gave me a great sense of peace that I haven't felt in I don't know how long.  The week leading up to transplant has probably been one of the most stressful of my life, so this day meant the world to me knowing that William's ordeal was behind him and he was resting peacefully, and that Chase was receiving his marrow.  There was something so comforting yet exciting about all of it.  In spite of only 2 hours of sleep, I felt oddly invigorated.  I suppose it was adrenaline, but at least it kept me going throughout the day.

Onto the bag of marrow - WOW!  I knew a liter would be a lot, but this bag was HUGE!  I took a couple of pictures of it and then had Rebecca hold it up so we get a better appreciation for the size of it.  Rebecca joked that she was getting her workout holding that bag up, which I don't doubt.  The lab made it special by placing a bunch of stickers all over the bag, including spelling his name out.  Between that touch, the banner, and the Re-Birthday signs plastered on his door and inside his room, it gave this day such a festive atmosphere despite the medical condition that necessitated it.

After the boys woke up, a few of us tried to get a word in to see if either of them wanted a drink or food, but it soon became clear they were quite focused on each other - which is how it should be!  I was thrilled they had that time together, which was about an hour before William decided he was ready to go home.

I absolutely detest being torn between my boys.  I wanted and needed to be with William, but I also wanted to stay with Chase.  I was so very proud of William already for what he went through that day, for overcoming his fears to give something so very precious to his brother.  Then he went and walked all the way from BMT down to the parking lot, which trust me is quite a distance.  He managed to stay awake for most of the ride home, and then we got him settled - pillows padding his hips - in the recliner in the living room to watch some TV.  I stayed awake for one show and then passed out for about 4 hours.  I convinced William to sleep in my bed so he would be more comfortable, and thankfully he took me up on the offer.

Neither of us had any problem going to sleep that night or sleeping through the night until about two in the afternoon the next day.  Just a sign of how exhausting the previous day and the days leading up to the transplant had been.  But with that now behind us, it is all a matter of waiting for the marrow to do it's work!

I want to extend my deepest, most heartfelt thanks for all of the well wishes extended to William and Chase!  Seeing all of the pictures of everyone dressed in green and orange touched me more than I can begin to explain!  The boys also couldn't believe how many participated and the variety of locations where they were sent from.   This has been a huge mountain for this family to climb, but all of your support and prayers has made the task of climbing it so much easier!

Thank you again so much!!

God Bless,
Caroline

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