It's 11 pm on Wednesday 19th January and this has been one of the longest days in my life. I'm finally home, where home is by our friends, and sitting on the bed doing a data dump to my journal. Originally I vowed not to go on the computer because I was too tired - but for some reason Jonathan is all wired up and he cannot go to sleep - and when that happens I don't even try to go to sleep until he does - or else he'll wake me out of my sleep.
Interestingly enough, I was telling Gabby that I had such a mix of emotions that I wished I could have journaled more regularly so that I could capture my emotions more accurately. I remember going though periods of despair, happiness, frustration, and I know depending on when I actually sit down to journal, my mood for that day will determine the mood of what I write and how I say things. Overall though ... today was a good day. We didn't get any new information but we got over one hurdle, although a small one, but at least it is an experience that makes us wiser and more comfortable with future (potential) events.
Here is a recording of the days events as I remember it:
I went to bed rather late on Tuesday night. I probably hit the sack around 12 am. I remember being hit with a thought around 12:05 am and memories of my mother came to me. It was two distinct memories - and although I cannot remember it clearly - the first one was more of a message of peace, while the second one was something she has said in the past - either while I was growing up or when Jonathan was younger. For some reason it prompted me to look at the time so I could ask mommy what she was doing at 4:05 am (Trinidad) time. I was telling myself it was all in my mind and that she was probably sleeping.
I woke up at 8:35 am - about 10 minutes before my alarm was scheduled to go off. I wish my body would stop doing this - because I could have gotten 10 extra minutes - but I'm sure if I didn't set the alarm I probably would have slept until 9:30 am. I remember thinking to myself - wow, I've slept for 8 hours! It's been a long time since I've done that - and I wish I didn't have to get up! I was not looking forward to the day's events - too many things to do, and I was not sure how well each event would have gone.
The plan was to leave at 10 am and arrive at Chuck E Cheeses at 11 am. That way Jonathan would have had a chance to drink his mixture of Cranberry juice and contrast and if by 11:15 am he didn't drink it - we would have had enough time to head over to CT / MRI for them to "force it" down his throat with the tube.
It was 10:20 am and we were now leaving our friends house. I was depressed and was crying. I had just spoken to my mom and apparently she was up at 12:05 am (or 4:05 am - her time)! I wanted to give her an update of the days events so she could remember to pray for Jonathan at each event. She is so much better at praying that we are that I wanted to make sure she had all the information she needed.
It's 10:50 am and we are no where near close to Chuck E Cheeses and Gabby is wondering if we will make it or should we just head straight to the hospital. The good think is that traffic was moving fast and as my aunt taught me - if you hope in between a line of cars and go the same speed they are driving - the likelihood of you getting a speeding ticket is markedly reduced. I wasn't looking forward to them inserting a tube down Jonathan's throat so I remember telling Gabby that we'll see where we reach at 11 am before we make any decisions.
It's 11:05 am and we pulled into the parking lot of Chuck E Cheeses. When we took the turn off from the highway - we started to tell Jonathan that he has to drink this cup of juice. The difficult thing was that Jonathan didn't want to drink anything ... couple with his extreme loss of appetite it was going to be difficult to get him to consume this mixture. We told him that if he drinks it we will go to Chuck E Cheeses. I think that in the beginning he didn't believe us but when we pulled into the parking lot he knew that we were telling the truth.
It's 11:15 am and Jonathan has only taken a couple sips from the cup. The juice tastes awful. What kind of juice is this daddy? I tell him we put vitamins in the juice. Gabby doesn't like it that I "lied" but I had to explain why the juice tasted different. We continue to coax him until he has drunk between half cup to 2/3 cup. I think he has drunk so much that his tummy has started to hurt. We try a new tactic - we'll go inside Chuck E Cheeses and he can take a drink, play a game and then take another drink.
It's 11:20 am and time is going but for some reason I'm not too worried. As we sit by a table, we tell Jonathan that he has to take two big gulps and then he can go and play his first game. He tells us that he cannot take a big gulp but can take a small one. Gabby says then he has to take 5 small gulps. As he starts to drink I count 1 ... 2 ... 3 but for my first count he has taken two small gulps so by the time I count to 5 ... he has drunk about 10 small gulps. I take a look at his cup and it's almost done! I'm so proud of him. We play one game and then he finishes his cup! He has exceeded my expectations and I'm so relieve that my mood has brightened up considerably.
It's 12:35 pm and we have just arrived for our consult with the surgeons. We need to do a consult first before they can do the biopsy. It's late - since our appointment is at 12:30 pm and we should have reached earlier - but we had so much fun at Chuck E Cheeses that we left later than we should have had. I eventually found out that the authorization was never put through so we cannot have the consult anymore. We decided the next best thing was to head over to admitting to prepare for his CT scan. I remember telling Gabby that maybe his CT scan will show nothing and that the reason we didn't have the consult is because he does not it anymore.
It's 1:20 pm and admitting goes well. Gabby has taught me to be less aggressive when talking to admitting - especially when I get that question about having our SSN. I try the new tactic she recommends and it works beautifully. We finish around 1:45 pm and head over to Oncology so they can put an IV to make it easier for the rest of the day's procedures without having to keep sticking Jonathan with needles all the time.
It's 2:00 pm and we find out that we really should not have missed the surgeons consult. Apparently it was very important and they wanted us to get it done today. Unfortunately the delay with getting the authorizations was due to Oncology so there was nothing that could have been done ... but we found out that they had started to schedule his surgery for the biopsy already.
We ended up waiting a long time in the room while the nurse gets the things she needs to put in the IV. During that time Gabby and I are having fun with Jonathan. He is so happy. I feel sad for him because he does not know what is going to come next. They had the game "Bop It" in the room and Jonathan and I was playing it ... having loads of fun and laughing. Gabby thought she had two kids in the room and not one.
It's around 2:30 pm and the nurse comes in to put in the IV. Jonathan starts to panic. He starts to cry. He doesn't want the needle and doesn't want the nurse to touch his hand. The nurse gets another nurse to help her and with Jonathan sitting on me with my legs wrapped around his legs to prevent him from kicking - the second nurse holds his arm steady while they insert the needle for the IV into his right hand - just above his wrist. Jonathan is screaming and crying but as they wrap everything up he starts to settle down and becomes very quiet.
It's around 3 pm and we head over to same day surgery and meet with the anesthesiologist. She explains the things that they will have to do both to prepare for the CT, during the CT and after the CT. If Jonathan was not going to stay quiet - they will have to administer anesthetic and then neither Gabby nor I would be able to stay in the room with him. This was the most uncomfortable thing for us because we have always been at Jonathan's side for every major event in his life and I just couldn't imagine not being with him and leaving him with a bunch of strangers. I was so relieved to get Jonathan to go to sleep at 3:15 pm that we got hopeful that he will stay sleeping so he would sleep through the CT scan. Unfortunately there was an emergency case and our appointment at 3:30 pm got shifted to 4 pm.
It's 4 pm and Jonathan is still sleeping. We're in a good mood because my son is sleeping and we're hoping that he goes down real quiet so he doesn't have to get any anesthetic and one of us could stay with him. We had already decided that if one of us could stay - it would be me since we didn't want Gabby exposed to the X-Rays. My friend - Gabby's cousin - had explain that women are born with all their eggs and we shouldn't put her under any unnecessary risk - whereas men replenish their supply very quickly.
Unfortunately Jonathan woke up when I attempted to put him down and with all the strange people and equipment around there was no possibility of him going back to sleep. The decision was then taken for him to get anesthetic. The entire procedure probably lasted about 20 to 30 minutes - but it was the longest 30 minutes. Gabby was quite unhappy - especially with hearing all the monitors and seeing him in that condition. There was one moment when we were getting ready to leave and they were administrating more anesthetic that the noise from the monitors slowed down and I think it is at that moment that Gabby really afraid and upset. For some reason I was not as depressed as Gabby and I was trying to make her laugh and was reading some jokes I had on my palm pilot.
It's around 4:20 pm and our primary doctor at Stanford - from Oncology arrives. She informs us that the bone scan tests have been moved to Friday and there is a tentative scheduled for the biopsy with the surgeon scheduled for Monday. They are moving really fast and although that is nice - we are a bit concerned. We have a consult with the surgeon at 1 pm tomorrow (Thursday) and we are hoping to get some news about the CT scan and the way forward.
It's after 5 pm and we are allowed to go to Jonathan as he wakes up from the anesthetic. They have to make sure that he is fully awake and can drink some liquid before releasing him. It's takes Jonathan a good couple of minutes to wake up and orient himself but he does not want to drink the apple juice. It seems we are going to be here awhile and no matter what we try to coax him he doesn't want to drink the juice.
Gabby has an idea. Does he want Jello? Can we give him the Jello instead of the juice and would they release him? Yes to both answers and we were so happy. Jonathan decides he wants two containers of Jello! We eventually leave the hospital around 6:15 pm and head for home. It was a long day. We are hoping to get a good night's rest and sleep until 9:30 am before getting ready for our consult with the surgeons.
I've decided to give Arielle a call to say hello. She is upset with me and doesn't want to talk. Gabby gets her to talk a bit. By the time we reached by our friends' house it is after 8 pm and Arielle is sound asleep. I'm hoping I can spend some time with her tomorrow before we head off to Stanford. I'm toying with the idea of taking her along ... but I'll have to discuss with Gabby. We're thinking that we will be finished early tomorrow so at least we'll be able to get home early enough to spend some time with Arielle if we don't take her.
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