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In the Hospital with Hematuria/Stuck for Halloween
By Margot | October 30, 2009
Sam’s bladder started bleeding again on Wednesday afternoon. It’s very dark red with lots of clots this time around. We sent him to school yesterday with a huge bottle of water hoping against hope that it would clear up and he could have Halloween. Yesterday afternoon it was looking worse and he said he’d felt woozy all day and he thought he was going to need blood today and would he have to miss his Halloween carnival. We called in to the clinic and they said to bring him in right away and he was at 6.7 hemoglobin last night and bought himself a blood transfusion. Last night he couldn’t go pee at all and when he was finally able there were huge clots coming out. We were on the verge of putting in a catheter at 3 am when I literally pulled several clots out.  There was blood all over the place, I had it in my hair. The uroligist came in this morning and was not happy (this putting it mildly) at all the activities Sam’s been up to. Though Neil and I both swear she said three weeks and she said she said six weeks. Doesn’t really matter though.  She’s going to try and get him on the OR schedule today to get it cleared up. She nearly bit my head off when I asked if it would be possible at all to get him out for any trick-or-treating and sarcastically remarked “And when would that happen?”  She said his bloody clotty urine sample was “impressive.” What is it with doctors and “impressive?” I felt horrible when she left and sat again in a dark room next to a sleeping Sam with tears running down my face.  Sam’s favorite holiday is Halloween and he was really excited because we bought tatoo sleeves so it will look like his arms are all tatooed as David Beckham.  He asked Neil last night, “Am I ever going to be able to have a normal life and go to school every day?”  He also said he’d wished we’d brought him in on Wednesday night so maybe he could have hit Halloween.  That was my fault because I thought it might clear up as it had in the past.   I should have known better though.  Andy and Charlie cannot come and see Sam because of the swine flu outbreak.  Agh. This sucks and it is scary for poor Sam.
 The title of my last post could have stood for the past week and a half as Sam’s platelets have been dropping by about twenty per day. They seem to be holding a little better this week as not dropping as fast. He had a transfusion on Tuesday and he’s at 50 today. His stem cell rescue at City of No Hope went fine (except for a pessimistic doctor) and aside from transfusions, he’s been great. Doing all normal boy stuff, soccer practice when tanked up on platelets and birthday parties (thus the displeasure from our uroligist). Charlie and Andy are good. Very excited for Halloween.  I have some good pics of Charlie flexing his muscles in his spidey suit at his preschool parade. He liked it so much he didn’t want to take it off so when the other kids put on play clothes he just kept his whole suit on. I’m going to try and get to school today and paint Andy’s face like Darth Maul since he can’t wear a mask.
I’m trying to get myself out of my funk before Sam wakes up because it’s going to be an uphill job trying to give him some cheer. I keep reminding myself what the nurse said to me the other day in clinic while Sam was getting platelets. We were reading the new Wimpy Kid book and laughing so hard (Sam nearly cried when they left the mom of the family at the gas station bathroom) and we were playing chess. The nurse said to me, “Aren’t these good times? You guys just seem so happy sttiting here together.” And so, though I have a lump in my throat at the thought of telling Sam that he will be having surgery today and not going to his school carnival I’m going to get over it and somehow, somehow make it up to him.  I know I’m feeling sorry for myself and Sam and I do know how lucky we are. For a little ray of sunshine, Sam’s VMA was down to 12 today.
 They just came in and said they can take us to the OR in an hour. They will hang some more platelets right before we go in.
Margot
Topics: Progress Reports | 15 Comments »
October 30th, 2009 at 3:52 pm
oh, sweet boy….. that sucks…..i know you will make the best of it for him….i also know how bad it sucks that you even have to….thinking about you all today and praying hard that he gets to be a regular kid soon….
love and prayers
rhonda dudley
cp: sydneymarie
October 30th, 2009 at 5:46 pm
Ugh. Hang in there Margot, I know you’ll give Sam a great Halloween, even if it is in the hospital. Random ideas to cheer up Sam 1)Get a flashlight tonight and tell scary stories in the dark. 2) Rent some scary movies and pig out on candy 3) As a surprise for Sam and the boys, when he gets out you could give the boys water guns outside filled with fake blood and tell them to have a vampire verse werewolf fight. This will be very messy but I think they would get a kick out of it!
Praying for a much better day tomorrow and lots of smiles.
kim-
October 30th, 2009 at 6:50 pm
<<>> I know how much this Halloween meant to him. M – you are such an amazing mom, I know he will have some fun adventure planned as soon as he is sprung from the hospital. As for the ‘impressive’ comment.. I laughed out loud on that one. True story:: Nick has been sick and developed a nasty fever and cough. When I asked my husband to listen to his chest (he is a doctor) he said Hmmm..sounds….”impressive.” As a physiciand wife. I can promise you… I don’t even know what that means. Impressive good? Impressive bad? Impressive holy S*** i dont know what to do -they didn’t go over this in Med School? What are they trying to say? So funny. Miss you guys. Please let me know if we can help.
October 30th, 2009 at 7:28 pm
!@#$$%^&*!!!
Jut makes me sick sick sick (and sad and furious and weepy all rolled together) that such a cheerful fun-loving boy and his beautiful family have to deal with this…and why he can’t get the fun times that Mom and Dad lovingly plan for him….he is just begging for “normal” and how many surround us and don’t know how good NORMAL REALLY is????????
Empathizing so much dear Margot and big tears here…
many hugs, love, prayers
October 30th, 2009 at 8:39 pm
I have been reading your blog and following your family’s journey for a while. I am so sorry to hear that Sam is in the hospital for Halloween. Maybe some neighbors would be willing to have some candy on hand for a Sam Halloween, so that Sam and his brothers could go trick or treating together when he gets home? 🙂 And as for the doctors, I am a physician assistant student right now and taking classes with med students. It is total cluelessness and it starts early. That is no excuse, though. It still makes you want to slap some sense into them! That urologist could use a few lessons on how to talk to patients and their families.
Hang in there! You are a fabulous Mom!
I am praying for Sam and your family!
Molly
October 30th, 2009 at 10:38 pm
Please let me know if there is anything I can help you with. I am here for you guys♥
October 30th, 2009 at 11:05 pm
Hi guys-
Im sooo sorry that Sam is in the hospital. I know he might be bummed. One thing I saw when we were inpatient over Halloween was the reverse trick or treating where friends and random people (surprise people or nurses, doctors, friends) come to knock on his door with candy and he has to play a trick on them or vice versa. I hope he gets to wear his tattoo sleeves- those sound pretty awesome.
I feel so bad for Sam. As you said, you know you will make it up to him and that will get over the stinky part. Everyone will feel much better once the clotting is resolved- hang in there!
October 30th, 2009 at 11:29 pm
Talk about a total bummer! I am so sorry. Hope Sam wears his tattoo sleeves all day tomorrow and freaks out the docs. Lots of good Halloween celebrations in above posts, so I know you will find a way to cheer him up – you guys are wonderful parents – don’t let the medical turkeys get you down. Jan
October 31st, 2009 at 12:18 am
Crap, crap crap. I hate this for you guys! It’s just so stinkin’ unfair. I also hate these new regualtions that keep families apart at hospitals. How are you supposed to handle a holiday???? UGH! I’m sure you’ll bring your joy and cheer and love of life to the whole floor! Hans had Halloween of 06 inpatient and we did reverse trick or treating and handed out candy to the whole floor. Still it is not the same and it just stinks. Hope the OR went smooth.
Lara
October 31st, 2009 at 12:27 am
Saw you today and wondered where Sam was at. So sorry to hear all this. If you ever need someone to vent to and maybe scream at- I listen well. Angela (Madison’s Mom)
October 31st, 2009 at 1:09 am
O-h-h-h n-o-o-o!!! For some reason I was thinking of you guys and on an impulse checked your blog . . . I am so bummed to read about Sam dealing w/ this issue over Halloween. I can imagine how very disappointed he must be and I am so so sorry. I hope Sam will be feeling great in a few days and that something really really fun will come along to lift his spirits. Sending buckets of love to the Hutchinsons. Shirley (mom of Simon, age 16, nbiv 98-01)
October 31st, 2009 at 1:15 am
Dang! We are keeping you in our prayers! Hey… who says Halloween has to be on the 31st… Pagans! I know Wateka is a gazillion miles away, but, I am sure that some really cool street in San Diego would happily do a Mulligan for Halloween… what kid would not want that.?!. So a shout out from Texas… San Diego… how about a Mulligan for Sam!
October 31st, 2009 at 4:29 am
Neil and Margot,
The Whalen family is praying and pulling for Sam, I’m sure he will get plenty of candy and be well soon:)
Take care – Brian
October 31st, 2009 at 6:37 am
Hey Marg,
So sorry for Sam; don’t feel bad about feeling bad – how you stay up so much of the time is nothing short of miraculous and, given the present circumstances you are entitled to be heartbroken for Sam. Even so, as everyone else has pointed out, if anyone can make it fun for him – it’s you! Tell Sam his cousins are wanting to see him and asking all the time when we are going to see the 3 boys.
Lots of Love,
Paul Kaz & kids
October 31st, 2009 at 1:44 pm
Love and Prayers coming your way from Wilmington Delaware. Hang in there Sam…and Margot and Neal, don’t ever second guess yourselves. You two are amazing and an inspiration.