Randoms

Started on Wednesday, Nov 10


Thoughts that have been roaming for weeks or just the past few days...

• Odd to think we practice his colors, letters and numbers in the hospital as well as home. He is good! He is into crayons, markers, stickers and aquadoodles.



• As much as he has been thru, Charito and I just discussed last week how his speech continues to grow. Longer sentences, clarity (other than the typical articulation sounds at this age) and humor. We can't seem to find the mute button at times. Even the hospital staff comments how talkative he is and cannot believe he just turned two. Comments like that make me feel good. It is not until I hear a comment that I am reminded that he is still plugging along at 2 yr old pace. No regression so far. Always a concern in the back of our heads.



• It's like straight out of a Halloween movie, a cartoon-the neon green goop or poison. Yup, that is Methotrexate for us-this phase's "poison" of choice. Check it out. So wierd to watch it pump through him for 24 hours straight. Now we monitor the levels remaining in his body to be sure it is be flushed out in his urine and stools. His level as of this morning is 69.19. He will receive the Leucovorin in the next hour.




• He had a fever of 100.6 as of 4 am this morning. That led to urinalysis, blood culture and CBC. Annoying blood cultures take a minimum of 24 hours and a max of 48 hours if they dont like what they see at the 24 hour presentation.



• His chest and lungs keep going back and forth between congestive and clear. They explained that since we are pumping him with fluids his lungs will expand. But they are pretty sure this is his asthma acting up. He does much better after a nebuelizer treatment and I think I'll be looking into treatments at home. I think this is something we will be battling all of winter.



• I hate that I have been unable to take advantage of the gorgeous weather. There were so many in October and pneumonia had us down. And now this week we are stuck in the hospital. No fair. No Morton Arboretum. No Botanic Gardens.



• Will I ever get back to my original blog? The "happier" one. The one I started when G was born. Still trying to find the right post to return to it with.



• What will G be like when he starts preschool? Healthier? Restrictions? To what extent?



• Will T need therapy one day? I know he's a strong boy but you never know what this is all going to do to him no matter how hard Charito and I are trying.



• I tell myself everyday that are situation could be worst off. And I REALLY mean it and believe it. There are so many "ifs" and "lack of" that do not apply to us. I am so thankful.



• Amy reminded me of how good a patient G really is. She jokingly called me to say I should be thankful G is as calm and oriented and familiar with all he endures at clinic and the hospital bc she and Neal BOTH had to hold Ayden down for a flu shot. I had to laugh! What a perspective.



• My mom always told me it took someone special to teach "special" children. I have held onto that phrase with each new student that entered my life (especially with the difficult ones!). I am grateful that I have taken my teaching strategies and used them with my own children. Not bc I wanted to turn them into students. But bc I really dont know how to turn the structure/expectations/prompts/cues "off ". Aerum brought his up to me the other night. She was complimenting the way Charito and I handle all of this. How we haven't backed down in our parenting style and still keep up with the rules and expectations that existed for G before cancer. I thanked her and explained how I do not know how to "turn it off". And besides-it works! It is bc of these strategies I have polite, productive, well-behaved children. All it is is my teacher mode with a consistent mommy touch. I know there are people out there who think we are tough on our boys but they dont live in our footsteps daily. We do what works for us and them. If we saw our kids struggling or hurting bc of our parenting methods we would have changed things long ago. And I know I am doing something right when I can spend as much time as I do in a place that most see as "doom and gloom" and both familiar faces and perfect strangers compliment us. It makes me smile from the inside out.



• I hope no one thinks I brag too much about what my boys have mastered on these posts. It's just me documenting all the positive. The things that keep us going. Those things are moving along the way they should be and don't have us worry all the time. It helps to be able to check this or that off the worry list.



• Grayson is so familiar with this place that I just mention our 2 yr old medical phrases and he knows what to expect. Like-"we have to go and see the blue birds" means we have to stay in the hospital on the second floor. Then I mention a few of our fav nurse's names and he asks if we go this way or this way (left or right) when we get off the elevator; "We are going to see Nurse Jennie" means clinic; "We need red blood" means a transfusion. A bracelet to G is his ID tag that he prefers to wear on his ankle ( I guess it's an anklet then, huh?). He has all the nurses wrapped around his finger that they allow him to access their handheld scanners and press the start button for his ID matches for meds. They gave him his own REAL stethoscope today! He tells them where to put his blood pressure cuff and heart monitor as soon as he sees a nurse pull them out. No complaints (unless he's sleeping then he is ticked off). So cooperative. When I say "We are going to give Elmo a hi-five" that means we have a long walk to the other side of the hospital (we walk past the gift shop w a huge Elmo balloon that he hi-fives every time). He knows when I say "Your tubey is not long enough" he needs to freeze bc his IV is hooked up to the pole and I have to catch up with him to give it some slack. We use words like "pokes";"listen, listen" for stethoscope use; "check ears" for otoscope use; "beep, beep ears" for thermometer use or he tells them he wants it taken under his arm if his ears irritate him; "take a picture of your heart" means a chest xray; he knows only Dr Kwon or Goodell can say when it is okay to eat following a spinal; and I prep the discharge nurse to say "1,2,3 Time to go Home" as our cue that he can actually walk out the door with no interruptions. These phrases make this process so much easier.



• Today Triston sang a song to me over the phone. I loved it!



• Grayson asked about Bryley and Triston today...he must be missing home.



• I had a great visit from a friend today and it was so nice to take that break. I don't do it enough. Thank you, "Speech Amy"-as Triston refers to you!



• I haven't showered since Monday morning and I don't stink like mad, yet. Do I, Amy?



• Charito had to email me Triston's hot lunch menu for me to yay or nay the list. So wierd to communicate that way so we could complete the order for the month of Dec.



• I may not be home til Friday or Saturday.



• I don't know what our plans are for any of the upcoming holidays and to be honest-we can't even wrap our heads around it. We have ideas for the boys and look forward to being "Santa" but I can't even look past next week in order to think about when the tree will go up and when we will shop. But I am excited to do this with my hubby...we are fun Santas. I learned the sneakies from the best-my parents. We use wrapping paper with Santas on it specifically for those gifts from Santa. I even write the gift tag w my left hand for Santa's signature. I love doing it! Charito thinks I am nutso sometimes.



• Today (Thursday) he needs a hemoglobin transfusion. He is sleeping soundly and we are hoping the creeping fever we have been watching all day does not reach the "official" temperature mark. He has not had one since Monday.That would stink-home later.



• I called to check on the baby just now and he was babbling up a storm so loudly! I miss him.



• Earlier today G had the chance to play bowling w Sam the dog ( one of many therapy dogs here).




• I kinow it may sound odd but I actually prefer not to leave the hospital room. There are so many volunteers and people stopping by asking if I need a break. If I want to head upstairs for a bit. First off, I know if you are a volunteer in a hospital, especially PEDS, you are a kind-hearted soul but I am sorry-I cannot leave my baby boy with a stranger. I usually wait til a nurse is in the room or Aerum or Alana from Child Life are here in order for me to run upstairs and get food. Otherwise, I just get sneaky with G's orders and leave some food for myself. There are refreshment down the hall 24-7 that I tap into as well. Leaving the room reminds me of where I am. I smell that hospital stench. I see other children suffering of one illness or another. I am reminded of the lines and waiting for elevators and other "normal" stuff outside this room and it is depressing. I would much rather remain in our room, take care of what needs to be taken care of and get home. I am in a better mood when I can stay here thinking and caring for our business. Don't get me wrong-I do get G out and about. There are so many opportunities for him. Child Life hosts so many activities. Pizza parties, art centers, play rooms, bringing toys to our room and offering play buddies. It just isn't as easy as you would think to walk outside the room and into those hallways.



• I miss taking Triston to school. I miss picking him up. I haven't seen him since Monday morning. He and I have a date for this weekend that is for sure!



• I miss the hugs and smooches from Charito. At least I got to see him tonite (Thursday). He brought us Portillos and hung out a bit-Thx to Auntie Najette for playing mommy to my other two boys for the evening.



• Sometimes I wish (even though I miss my home) that I could snap my fingers and find ourselves in a new home with a new beginning. Our dream house.


• It is Friday now and we are not going home until maybe tomorrow. That toxic level of 69.19 dropped to 1.6 by Thursday morning but then hung out at 1.1 all day. This morning it is 0.4 and they will discharge us at .1 or .2, it concerns them that the level seems to plateau at points and this is one drug they dont want hanging out in his system longer than it needs to. We will see if after more flushing and Leucovorin if it drops to that magic number by tomorrow morning. This is ridiculous but it is what it is. I just hope this is just a path the Methotrexate takes bc this is our first "batch" in this phase. It would be a very long phase the next two months if this is the pattern his body takes on with each "batch" every two weeks. We have already been here 6 days and that pattern would take quite a toll on all of us every two weeks. I know it is for a good reason before we are discharged but it sure complicates things at home, me feeling so far away.


• I have been crying off and on all day. T had a rough week at school and I cannot even express my pain, ache and tears for him. It was bound to happen. I know it could be worst but it still hurts. None of this is fair to him. HE is the one who is going to remember all of this. The scars this will leave on him. As much as Charito and I can plan, predict, prepare him for what the next steps are we cant protect him from the unknown. Like all of a sudden my being here what should have been 3-4 days but has turned longer bc of the unknown way G's body excretes the drug. Who knew? My poor to-be-5-yr-old hit his own emotional, frustrated, worrisome wall this week and I HATE that. He is hurting and I want to make it all go away for him! I HATE a lot of things right now!


• On the flip side T's teachers are great. We have been back and forth over emails since last night and she is brainstorming right along with me. She truly cares for him and understands the whats and whys of our situation. She is fully capable of walking my baby boy through this and I just hope it goes as smooth as he deserves it to be.


• I just had to ask my mom if it is normal for my hair to fall out everytime I run my hands through it IF I haven't washed it in 5 days! Apparently, it is. Good to know bc I thought I was going crazy.


• If it is not a fever we are hoping doesn't show up it's his asthma flair ups. He woke from his nap a bit ago sounding coarse. This environment does not help. Just got a nebuelizer treatment. We also receieved his nebuelizer for home today. A home-health assistant tutored me on it and off he went. It is a modern, compact contraption. I think I am gonna like it!


• G ate really well today considering he preferred Pediasure over most foods yesterday. He even ate quesadillas today. That's a first.


• Talk about irony and need-T's day was better today but we still have lots to conquer. I was struggling with this all day. Out of the blue Alysa offers to take him for a playdate today afterschool. He has missed his friend Jackson so much and vice versa. They have been buddies since Farnsworth. I was torn on what to do. Would it seem like a reward to T after the impulsive actions he displayed at school. But then it hit me. This offer from Alysa was for a reason. He needed this. An old friend. A piece of his past, before leukemia. And I was so glad I agreed to it. I guess he and Jackson continued to tell each other how much fun they were having with each other. He even told Alysa he misses her. Not only were T n Jackson pals at Farnsworth but Alysa drove T home everyday and set up playdates. He has always adored Alysa and had this bond with her. That mommy thing I could trust in. They are amazing! The irony-Charito later tells me this evening that this morning on the way to school T asked who was watching him afterschool. Charito told him Lula. T told Charito that Lula should go home to rest and Alysa should come and watch him. It was meant to be! He tapped into a time when things were not confusing, frightening, unpredictable, etc and shared that with Charito. So, Alysa and I brainstormed that whenever G has to be in the hospital during this phase (bc it will be so frequent) we will set up times for T to get out of the house and see them. That way he has some predictability, comfort, something to look forward to. I wish I could have given that to him this week. The unexpected setup of our arrival on Monday didnt allow us to plan anything. We scrambled around all week trying to get things covered. At least we an anticipate our next hospital stays with the hopes of no fevers or serious complications that change that timetable. We NEED to do that for Caden and Triston.


• I am trying to get G to relax now and he is wide awake. I am so tired. Another day of no nap due to so many interrruptions, my mini-meltdowns and thankfully Child Life Specialist "friends" to hear me out. There really is alot of support here that I can depend on.


• Til tomorrow (Saturday) for more ramblings... and hopes that toxicity level is at .1!!!!!!!!!!!! I have to adorable boys waiting for me at home, oh and a big brown boy too.
• We get to go home today! It is Saturday now and not without any drama. Hours before I was to hear what that magic number was Grayson developed a bloody nose. That led to him rubbing his lip in frustration and that began to bleed. Before I knew it he started throwing up blood. I yelled out to Nurse Christina. She saw the sheets covered in blood and yelled for a nurse to get his platelets numner to her NOW. We needed to know how long this might go on. If that number was low he was not going to clot quick enough. After about 8 minutes it stopped but each time he cried it started up again. By the time Dr Melanie (a PED resident that we are now in love thanks to this week's stay!) showed up it stopped and we were just dealing w a sad, scared G sitting in my lap, trying to calm him down. We hypothesized that when I used the suction on his nose when he woke this morning it probably loosened up dry, bloody boogers that had been sitting there for the past couple hours in his sleep. And once I nabbed thick, dry boogers from the front of the nose the blood started pooling and built up in his throat resulting in throw up. It had to have been building awhile bc he threw up blood and some brown stuff, most likely dried up blood. This explanation made sense bc his platelets number was good and his chest was clear as of 6 am. And all of the nebuelizer treatment have a tendency to mess with the flow of blood vessels in his nose, so we irritated things a bit. This all hit at 9 am. Then by 10 am when Dr. Kwon waked in to give me the final say on whether we could go home (the toxic number dropped to 0.03, finally under 1) G's nose began to bleed again. Dr. Kwon showed me the more comfy, quick fix way to stop the bleeding and wallah! It stopped and he gave us the green light to go home. I should be home close to lunch time.
• So, I am pleased to end the ramblings of the past few days of this hospital stay. We return to clinic on Monday for a simple blood count and then we are back here the following Monday to do this all over again. Even Dr. Kwon said he hopes "he does better next time" meaning that he hopes the toxicity level of the methotrexate does not take so long to leave his system as this week proved. I hope so, too! Cheers to no hangups before Monday morning or through the week.