Saturday, December 5, 2009
Driving down the hill to town, from the backseat Liam pipes up: "Frost is not frosting, Mama." Oh, I get it now. "That's right Liam, frost is not frosting. Frost is frost, it's frozen dew and water that we see in the morning. Frosting is frosting, it comes on cookies." Liam thinks this is hilarious. Liam: "Frost is frost! And frosting is frosting! I like frosting! I like frosting, Mama!" Don't we all. Although I like frost too.
Today we visited the local Waldorf school for the winter fair. Liam did great exploring a new place, although the Snow Maiden puppet show was too much for him. They should have thought to explain that it is not for 2 year olds. Five minutes into it, Liam started in with (in a quiet voice, thank God): "I want to go outside. I want to go outside, Mama. I want to go outside right now. Please, Mama." When he didn't get interested in the show after a few tries, we went outside. Followed quickly by another 2 year old.
Probably a good thing, anyway. Will's mother came out a few minutes later and said: "This story is not going to end well. Summer is coming and it is going to melt their snow daughter all away." I'm glad I didn't have to explain that one. Later we stood in a line with another 2 year old whose papa volunteered "we didn't make it through the puppet show either. I guess it really wasn't for little kids." No kidding.
When I asked Liam after dinner what the best part of the winter fair was he said, right away, "Seeing GG and GoGo." (Will's parents.) Sweet beyond words. Second best thing was the gingerbread.
(Don't worry Grandma; you appeared at bath time when Orca Whale looked all over the tub for you and Grandpa. "Where is grandma? Is she under big boat? Nooooo. Is she in rain-maker? Nooooo. Etc." He finally decided that you were in California. Not the bathtub after all.)
Thursday, December 3, 2009
We had a lovely meal. My sister made the trip up from California for just the few days she could spare and it really made a difference to have her here. Same as last year we made the rolled and stuffed turkey breast. Same as last year I missed the visual of a big bird, but liked the taste and the manageable food quantity a lot better. Will's mother made basically everything else, including two fantastic pies. And she schlepped it all over to our house. Very nice.
In the kitchen Liam has his play kitchen (a gift from Will's generous sister) and his chalkboard/magnet board. I like to think of him working away in his play kitchen while I'm making dinner, but usually he likes to play with it at other times, because when I'm cooking he wants to be "helping" me.
Most of Liam's toys and books are in the living room, where we all enjoy them and it's easy to play or have a story or work on a puzzle.
There's a new addition in the dining room, where I cleaned out a cupboard for Liam's art supplies and whatever else he wants to put in there. . .so far, he is most interested in climbing in himself. He likes that it is "all my cupboard."
We're going on almost two weeks since Will last came home from the hospital; he had his last dose of IV antibiotics last Friday and is now on an inhaled antibiotic to try to keep his recurrent infections away and give him a chance to get stronger. So far, so good.
Thursday, November 26, 2009
Rain, rain all day today but warm. Warm enough to walk in just a sweater when the rain was lightest, and stomp in puddles, and visit the neighbor's friendly cat (Bunny) who was surprisingly and delightfully out in the rain too.
Saturday, November 21, 2009
So, home, on IV ceftaz for at least another week to treat a few kinds of resistant psudamonous. Coumadin to continue treating the clot from the final picc line. And, I think that's all that's new. The nurse went over all the medications with me when Will was discharged. Holy Mother of God, it's a lot of medications. I don't see how Will keeps track of them all.
Liam was so happy to be home and see Will. And so relaxed (and tired, he was up at 5:30 AM with me this morning) that he went straight to sleep tonight. Looking forward to a day to catch up on grocery shopping, picking up, and just being around the house tomorrow. And the library, maybe; Liam told me that he wants a book about sharks (Why? I'm not interested in sharks.) and that we should "go buy one at the library." Okay.
Wind and rain; rain and wind; wind and rain. Makes one appreciate anew the idea that we're really very close to the (temperate) rainforest and get a lot of it's leftover weather.
Wednesday, November 18, 2009
I know where security is to get you into the parking garage after hours and how to (usually) find a wheelchair with a full oxygen tank. Where to find the snack cart in the middle of the night after the cafeteria is closed. What time the coffee place opens, and that it is a different time on Saturday (8:30) and different still on Sunday (9:00).
I know what a rapid response is.
I know the difference between the resident, the 3rd year resident, the intern, the fellow, the attending, and the medical student. I know that you are not supposed to call the medical student "doctor" especially when the 3rd year resident or the attending is around. It makes the medical student have to explain. I know the charge nurse and the stat nurse and what they do and what it means when they show up (something has gone wrong or is getting worse).
I know how to reach physical, occupational, and nutritional therapy. I know the direct phone number to the Medical D Team team room. And somewhere I have written down the number for the Medical A Team room, from some other time, before. I know the medicine doctors call the shots officially but that you have to suck up to the consulting specialities too. That it's your job to plant seeds, ask leading questions, sometimes be direct, and---above all---keep track of what is going on. Every test, every dimension of every problem, every theory or idea; and it is your job to interject, gently in a way that makes it seem puzzling, what you know about what happened the last time, because they do not know that, and they are not looking.
I know what time blood is drawn in the morning, and roughly how many days you have to be here before then send the "spiritual care" person even if you said you didn't want one when you were admitted (10 days). I know that it takes a minimum of 56 hours to get discharged from the first time the word is mentioned. Sometimes, often, longer.
Will is stable today; some better, no worse. He is getting IVIG in hopes that it will help his immune system fend off this and future infections. It's a non-specific treatment, meant to improve the overall vigor of his immune response. Later this week if all goes according to plan he'll have a portacath placed, and after that, we hope, come home and not have to come back here for a long time. Liam and Mollie are with my parents (thank you!) and I leave tonight for work east of the mountains. Back late tomorrow.
Monday, November 16, 2009
This is Will’s seventh or eighth hospitalization since August. I think in that time the longest he has been home has been about two weeks. I guess this is what moderate to severe lung disease looks like. He just can’t seem to get stable or well.
In this last series, he was discharged on October 30 on two IV antibiotics and IV ganciclovir (to treat CMV). He was taken off all those medications on November 9 because his picc line was infected and had a clot (the line was removed that day, too). By November 11 he had a junky sound cough and by the 12th he had a persistent fever of 102 and his oxygen requirement had gone from saturating in the mid 90s on 2 liters to saturating in only the upper 80s or low 90s on 5 liters. That’s a pretty fast downhill and pretty frightening.
The ID doctors now think that Will coming off IV antibiotics must have coincided with the drop in his white-blood-cell count caused by the ganciclovir. (He was very neutropenic when admitted on Friday; and we expect the wbc drop with ganciclovir.) So, he had really almost no immune system at all at that point, and that allowed the bacteria to take hold again really quickly. The pulmonary doctors think this is a good a theory as any, especially since Will is improving on the (new) IV antibiotics they’re giving now.
The second theory is that the clot in him arm from the picc line caused a transient blood-infection (the blood cultures haven’t grown anything yet, but they can be really hard to catch) or that a small piece of the clot migrated to the lung and caused the new consolidation and Will’s other symptoms. The pulmonary docs are less interested in this but say that it’s possible. (It is, I think, the medicine docs favorite theory though.) Will is being treated with a heparin drip to get rid of the clot in his arm, which is the same treatment he’d have if the embolism theory turned out to be true, so, that’s that. The only way to know for sure about an embolism is to do a CT with dye and contrast, which Will’s kidneys couldn’t tolerate right now.
Possibility number three is that it’s a return of CMV; he did have a slight positive for CMV when tested on Friday (up from a zero on Monday), so that will have to be watched carefully. The CMV is looking like more a future concern though, not the current problem. Possibility number four is that it is aspergilosis. They were getting pretty concerned about invasive aspergillius on Sunday, especially since Will had been having sensitivity to bright lights. But, since he’s improving, and that sensitivity is going away, the aspergilosis concerns have sort of fallen by the wayside. Will was successfully treated for invasive aspergillius about 18 months ago. It’s a scary thing to have since the prognosis is not great; however, since Will is known to respond to the treatment it is at least familiar.
Possibility number five, as always, is that it is something totally different and new: new bacteria, resistant bacteria, new virus, or whatever. They don’t think it’s the flu (either type).
So, the current plan is continue treating with antibiotics, continue giving fluids and hope the kidney function improves, no bronchoscopy, await further culture/sensitivity results from the sputum sample and viral culture results from the nasal swab/lavage (which they might have lost and, if so, will have to re-do), and see how things go. Will’s kidney function is improving but still not back to his baseline (his baseline for kidneys is not 100%, it’s more like 50%). His anemia is all over the place; he did get 2 units of blood over the weekend, and that seems to have improved things slightly. His white blood cells are starting to come back now that the ganciclovir is stopped and he is being given GCFS again.
The other thing that will have to be worked out before Will can come home is IV access. He can’t have any more picc lines right now. So, the access options are either peripheral IVs or a port. The pulmonary doctors want a port, but everyone will have to be really certain that Will is as infection free as possible and healthy/stable enough to tolerate the port placement, which is semi-surgical.
So, how’s Will doing you might ask? He’s tired. Tired of being sick and in the hospital, and sad about moving a step or two more down this road of progressive lung failure. A port is sort of a big deal, it says: you’re at the point where you need medical intervention most of the time. He was happy to get rid of his port after his transplant. It’s hard for him (that puts it so lightly) to be at this place again. He’s very steady, but he’s also tired and sad.
Sunday, November 15, 2009
"Liam did not want a scrambled egg...until D came out with, "What, you don't want a chickenberry?" (That is a very old Southern term I haven't heard in years, and I don't know where it sprang from today.) Immediately, Liam said he wanted chickenberries RIGHT NOW. So he ate most of his, and then had a small bowl of cereal like GoGo's. [GoGo is what Liam calls grandpa.] The cereal has a modest number of raisins in it, Liam picked them out first, and then sang, "Raisin bite, raisin bite, where are you?" to the tune one of the Wonder Pets songs."If you'd like to hear the Wonder Pets song and see how the show is made please click here. Really, why should we be the only people who have it continuously playing in our brains.Things here at the hospital are going fine. Will seems to have turned some kind of corner and is improving. Of course, it's never that uncomplicated, but all in all, things are looking better and I'll post some details soon.
Saturday, November 14, 2009
At any rate, if you are at all interested in CF or organ donation I hope you have the chance to watch Eva's story. (Also, it is meant to be a great documentary and winning awards and all that; so it's good if you just like good films too.) If you get CBC it will be on Monday night, November 16. We'll be watching. And, Eva, if you find this on the Interwebs, we're thinking of you and sending love.
In other CF-related news, I am very sad to post that Deron Arnold passed away and according to his faith was undoubtedly received into heaven on November 8. Deron also suffered from CF and after waiting for more than a year received his transplant in September. Unfortunately there were many complications and Deron never fully recovered. Deron was, I think, pretty much the first not-already-known-to-me commenter on the Liam blog. He was a doctor by training (pathologist) and had lots of questions about Will's CF and transplant experiences. They "talked" occasionally and I sometimes played intermediary, relaying questions and answers back and forth. I've been thinking of Deron's death a lot this past week and it makes me really, really sad, which is why I haven't written anything about it before now.
Deron and I didn't have a lot in common in terms of our world views, but I had great respect and affection for him. He was a very likable person, even if we disagreed about, well the things people disagree about, I guess, politics, religion. I hope it's not gratuitous to say that. At any rate, we both had a lot of questions about and were pretty invested in navigating the hazy world of chronic, life-shortening, illness (him because he had one, and me because of Will). And we both had young children conceived through IVF. I admired his steadfast faith, curiosity, good humor, and seeming ability to pull up his socks and get through some really unrelenting tough stuff first while he was waiting and then after transplant. He didn't want to die. He never stopped trying to get better. He is survived by his wife and twin boys, his sister and her family, and his mother.
I invite you all to join me in remembering Deron and his family and praying for Eva and her recovery. You know that I think the world of transplant technology, and it's getting better all the time, and if you're not already, I hope you rush out and become an organ donor right now. But, what we really need is a cure for CF. If you feel moved to include the doctors, nurses, researchers, organizations, funders and countless patients contributing to CF research in your intentions, I think that would be just great too.
Friday, November 13, 2009
This time it is very high, persistent fever that came on suddenly (Thursday morning) and was accompanied by increased shortness of breath and a big jump in Will's oxygen requirement. He was started on Tamiflu yesterday (just in case) and this morning we came into the hospital through the ER, as directed by the transplant clinic. The ER doctors confirmed the decision to admit him right away, and they started antibiotics, etc. Eleven hours later he was finally assigned a room and brought upstairs. Eleven hours in the ER is a long time. Especially long if you're sick and feel like crap. Also especially long if you've had about 5 hours of sleep total in the past 36 hours and still have work that must go out that day and the ER has no Internet connection.
At any rate, Liam is happy with Will's parents. My parents are kindly taking care of Mollie the dog. And I'm here at the hospital with Will who is very sick but appears to be stable. Hopefully the antibiotics will start to help and some of the many, many tests that are currently cooking in the lab will come back soon to tell us that whatever it is, it is super curable and really easy to treat.
In other news: Liam has started banging on his music toys in time to music and/or singing along with the banging. It started over the weekend last weekend and is continuing. It is very, very sweet, I'll try to take video. When he is singing along he favors "BINGO" (you know: there was a farmer had a dog, and BINGO was his name, oh, etc.) and "Baby Beluga" which is a Raffi song that you really only need to know any more about if you have a 2 year old in your life and if you do you undoubtedly already know all about Baby Beluga. (Okay, here, you can see it here.) Otherwise, he will do his best to bang away in time with whatever is playing.
Saturday, November 7, 2009
The scene: Liam and mama are playing with cars and finger puppets. Mama puts the finger puppets on her finger and they talk to the cars and run around. Liam pulls the finger puppets off and excitedly makes them hop around, chattering the whole time. Liam hands the finger puppets back to mama.
Mama: You want to play finger puppets again?
Liam: Mama do it, please mama.
Mama: Okay, should I put them on me or you?
Mama: Okay, are you sure?
Liam: You! You!
Mama starts to put the finger puppets back on her fingers. Liam goes nuts.
Liam: "No mama, you do it, you do it!"
Mama: "Liam, do you want the finger puppets on mama's hand or Liam's hand?"
Liam: "Liam's hand."
Okay. Order was restored.
Wednesday, November 4, 2009
Tuesday, November 3, 2009
Then, last Tuesday he had some wacky lab results including a crazy high potassium level that resulted in the transplant clinic tracking me down at work to tell me that I had to go get Will immediately and take him to a local emergency room to recheck the blood labs and get stabilizing care. They emphasized that it would be too dangerous to take him all the way to the Seattle hospital (it's about 90 minutes away) in this condition. Except, after all that, it turned out that on rechecking it seemed like his potassium level wasn't quite so crazy high after all. In one recheck it was normal, in another it was a little high, but didn't need treatment. At any rate, considering that he was becoming more and more short of breath no matter how much the supplemental oxygen was turned up, they wanted to admit him again anyway. So, he went back into the hospital, was started on anti-viral treatment for a possible CMV infection (on top of everything else) and sent home on Friday.
That's the Readers Digest version. I'll spare you the details of which medications, the arguments and difficulties with the doctors over which tests to do. (Bronchoscopy or not? Did they really need one to know what to treat, I still think no. Ganciclovier or not, is it really an active CMV infection, we're still not sure. Overdose of GCSF and crazy high wbc count. . .again? Three iv medications, 1 every 8 hours, 1 every 12 hours, and 1 every 24 hours. . .really?) So, I guess, on reflection, I'm feeling pretty good that today is Tuesday again and we're all three -- Will, Liam and me -- tucked away cozy at home.
Will has been quite short of breath since coming home from the hospital, even on 4 liters of supplemental oxygen. It's not clear exactly what this is about. His O2 saturation is okay, but he gets really out of breath with any activity. For the first day or so home he stayed upstairs, pretty much in bed, all day. This was different and upsetting. Even when Will has felt his worst, towards the end of chemotherapy for example, he always would get out of bed and come downstairs during the day. He is feeling better today and yesterday. Able to come downstairs in the afternoon and to walk around the house a little. We're hoping for continued improvement. It all feels really fragile though. And I feel so sad and unhappy for Will, because it's not nice to be this sick and have to go through all this stuff. As awful as it is to be the one worrying about all the hospital stuff, I imagine that it is worse, much worse, to be the one in the hospital actually experiencing it. We've taken Liam out of school for now, in an effort to reduce germ transmittal.
I'll post separately about Liam's Halloween and try to be better about updating. Thank you, all for your kind good wishes and thoughts. It does help; really it does.
Sunday, October 18, 2009
Saturday, October 17, 2009
I want to remember that it was just this time 3 years ago we found out we had been incredibly blessed and lucky that our IVF had worked. And then after about a month of true terror (the numbers they track were quite low and slow to double), and then 8 more months of regular terror, we were blessed and lucky again to have this sweet, cautious, observant, silly little person come into our lives. Thank you universe or whoever one thanks for this type of gift.
The last picture is Liam trying to snag the birthday crown from my mother's head. He thinks all birthday crowns (and birthday presents) should be for him.
Friday, October 16, 2009
Tuesday, October 6, 2009
Sunday, October 4, 2009
Will is still feeling really, really bad. He's on 4L oxygen continuously; this keeps his saturations in the mid 90s, except that they go down to the mid 80s pretty quickly with any activity. Grandpa DM helped me rig up the O2 tubing so I think it works okay. It's only 50 feet, so we move the oxygen concentrating machine and switch to a different set of tubing for when he goes upstairs. As we figure this all out more, I'm sure we'll get a better system. He is feeling crummy enough that he wants to just sleep a lot now.
It has been beautiful fall weather which we've been trying to enjoy. Fall is my favorite season, and I'm hoping to tap into a little bit of that if I can. Liam is on a play outside kick, and all he wants to do is "dig a big hole" (like Mollie the dog) and move the dirt around out of the garden bed, into the path, up onto the porch, etc. His hands turn to ice cubes and he has a complete fit when he is made to come indoors.
Last iv antibiotics tomorrow. Then it's just the oral antibiotics and the fluconazole for the cryptococcus infection. Unless things change a lot, we'll go to clinic probably a week from Monday and see what the doctors think. In the meantime, it's just rest and try to feel better.
Wednesday, September 30, 2009
None of the doctors really seem to have any idea why this is happening. In fact, they've been sort of arguing that Will's O2 requirement is stable or even, better, than it has been. This is so strange to me that they would look at one reading only and not what is a clear trend, but, whatever. Will was back into the mid/low 80s this morning and that seemed to get their attention. He's had sweating and some nausea yesterday and again today, which may be the fluconazole. They have (re)started another antibotic because they are concerned they don't have full coverage of both bacteria with the one Will has been on. And they are watching his white-blood cell count carefully. They think they might have "overdone" the GCSF a little, since Will's white blood cell count was in the 60,000 again today. (Normal range stops at 10,500, if I understand all this correctly.) Very high white blood cell count can make you feel like crap whether you're sick or not.
In the good news department: the spinal fluid tests were all negative which means there is no CNS involvement for the Cryptococcus infection. That means the treatment is significantly more easy to tolerate too. They thought Will lungs "sounded" clearer this morning. The nasal swab for both Rhino and Adenovirus was negative, so Will cleared them and doesn't have persistent viremia.
Liam is a Grandpa DH's and GG's until they leave on a trip tomorrow. My parents' have the dog and about 100 errands that need to be done at the house (let the cleaner in, take the trash out, etc.). We appreciate all this help beyond words.
Saturday, September 26, 2009
So, they're doing a number of examinations to see if they can tell which parts of Will are infected. Head CT (normal), eye examination (normal), and lumbar punch to collect spinal fluid to test (fluid appears normal, but it's the lab tests that will really show what is what). The lumbar punch thing is an example of, really, how tough Will is. I am about in tears if I have to have an IV put in. Will just gets through it, whatever it is. I remember when he was being treated for Hodgkin's lymphoma and the oncologist said about one of his (many) bone marrow biopsies: "you could give a class in how to tolerate these."
Thursday, September 24, 2009
In the moment it's pretty easy to stay calm and just try to comfort Will, because that's what is needed, but on reflection, it was pretty scary. Luckily, his fever broke and they started giving him lots and lots of IV fluids which helped a lot. By midnight, he was down to 40% on the oxygen high-flow machine and his fever was normal. He had another (much lower) fever this morning and has been fever free since then. He's off the high-flow and back on oxygen by nasal cannula, and down to 4L, which is keeping him saturated in the mid-90s.
Today we learned a little about what might be causing a lot of this: Adenovirus. Like most viruses that Will gets, this is an "oh, never mind" type thing is most of the population, but can be very serious in people with suppressed immune systems. He also has Rhinovirus and his typical bacterial infections (psudamonous and strep). He's being treated with antibiotics for the bacteria and anti-fungals, just in case. There isn't any great treatment for the virus. He'll have more testing to see if it's an active infection and, if so, how serious it is. If the infection seams to be still active and still serious, they can investigate some treatments, and can give him IgG if his antibodies are low. Otherwise, they watch it, treat the bacteria, and hope it clears itself.
They've been worried about Will's blood pressure today, it is low, which can be an indicator of worsening infection. But, it seems to be going up with more fluids, so that's good. There also has been a lot of talk about a lymphoma recurrence -- which certainly is something serious to consider. But, as of today, the oncology doctors think it should be on the back burner: they don't have any evidence of recurrence and Will doesn't have the same symptoms (exactly) as he has with his past lymphomas. Last night and this morning there was a lot of noise and speculation about a move to the ICU, but that seems to have abated too for now and Will is, by all accounts, feeling better: lower oxygen requirement, blood pressure back in the normal range, and no fever.
Will's regular pulmonary doctor is attending in the ICU this month and stopped by to say hello, which was really nice.
Second hospital sleepover in a row tonight, and 4th night away from home and Liam. If it's a quiet night and they've got a clear treatment plan tomorrow, I'll go home in the early afternoon. Hoping that's the case. My sister is visiting and I'd really like to see her before she has to go home again on Sunday!
PS -- I forgot to write earlier. Will has been great through all of this. Steady. Not freaking out. Nice to the nurses and doctors. Cooperative. Eating. Today he even did the flutter value thing to promote coughing and coughed up a bunch of junk from his lungs.
Sunday, September 20, 2009
- A very sunny morning, up early and outside on the porch for coffee (mama) and yogurt with honey (Liam). Yogurt with honey is Liam's new favorite thing. We've been working on how to ask for things, and for what he really wants he is very reliable: "mor mm mm hon'ee, peese, mama" was today's expression. And, after dinner when he was having yogurt and honey for dessert it was "peese, da'dee out-si, mm mm hon'ee out-si, peese!" ("Mm mm" is his word for yogurt on account of the kind we buy has a cow on the outside of the container and cows, of course, say "mm mm;" he likes to eat outside.)
- Pee pee and the other thing in the potty at different times today for Liam. Pee pee in the morning was preceded by stripping off all his clothes on the front porch and then running inside and saying "mama bye bye, mama bye bye, etc." and then when I tried to follow him "nooo hi, nooo hi mama." I guess he wanted his privacy.
- Fever and feeling crappy for Will which took up most of the day, but by tonight he was feeling okay enough to eat dinner with us, to accommodate Liam by going outside for dessert (even though he really didn't want to), and is right now upstairs reading stories. Will thinks and I agree that despite this congestion and whatever is going on to cause it and the fever, his breathing is some better. This is wondrous because it means that, hopefully, the chronic rejection has been stopped for now and it's a matter of optimizing the lung function he has left and trying to stay healthy. We hope his doc appointment on Tuesday can bring some hopeful news. In the meantime, we'll get the results of the oximetry testing on Monday and (likely) home oxygen which, even if he uses it only at night, could be really helpful as much as no one wants it.
- Picking up much of the garden and cleaning Mollie's dog house so it's snug and warm ready for those winter days when she just refuses to come inside until after dark.
- Apple crisp warm from the oven.
- Packing for me; a work trip that cannot be avoided starts tomorrow.
Every day is a mix. That's how it goes.
Friday, September 18, 2009
Today I drove out to the next town over (it's not far) and picked up the machine for oximetry testing. It takes a continuous record of Will's oxygen saturation to see if he qualifies for home oxygen, at least for over night. Will does not want this; does not want any of it.
Tuesday he'll see his regular pulmonologist, to see if the bronchiolitis obliterans syndrome has stabilized, and what the options are from here.
Tuesday, September 15, 2009
Story time #1 with Daddy tonight. Did you have these books when you were little? I have such vivid memories of the Richard Scary books. This is the one about trucks, etc.. Things that go. Will remembers them too and is actually the one who tracked down these books when Liam was younger. I didn't realize it, but Liam has learned the names of most of the characters. Mistress Mouse, the tow-truck driver. The Pig Family. Officer Flossie. Gold Bug. And, Liam's favorite, Dingo Dog. We looked at this book last night too and this morning Liam told me that Teddy Bear's new name is Dingo Dog. (Knit Kitty is still called Dory.)
Nothing has changed. Will had a somewhat better day today. I think he's trying to be more active. Still short-of-breath most of the time, but every day that goes past without further obvious decline opens the mind a little more to the possibility that his lungs may reach a new plateau, lower than before, but not totally out of luck. And maybe we can stay there for a while, and make a new normal. Maybe. I know it is my job now more than ever to just experience each day and make the best of it. Let go of the past, and release myself from the tyranny of expectations for the future. It's not a strong suit of mine; but I get to practice.
I downloaded a bunch of information on bronchiolitis obliterans syndrome today but haven't yet organized it or read it. And I got a very sweet email message from a reader offering to help with access to on-line medical stuff. Thank you, I'll be in touch once I get my act together. Thank you everyone who has visited this space and offered kind prayers or intentions. Between the help and support we get from the virtual world and the daily help we receive IRL*, I know we are not alone.
We're going to try to be more about the every-day parts of our little days, how Liam is growing, whatever the facts are with Will so people can keep up with that, and less a vomitorium for anxiety around here.
*A small sample: Grandpa DM and Grandma KM were over at the rental again today, working with the workers to figure out the floor, and then going to the store to get the new flooring, and then taking it to the house. . .Grandpa DH and GG had Liam all day today and will keep him overnight tomorrow because I have an extra early work day on Thursday. A very kind message from a cousin who has enough on her plate to not need to take the time to reach out to me. Thank you.
Monday, September 14, 2009
At the same time, he is incredibly steady through all this -- not freaking out in any way that he communicates to me. When asked says: I'm sure it's temporary. And he feels some better in the evening. Right now walking around eating left over pizza; dealing with the dog.
The thing is, rejection-related damage is not temporary. It's permanent.* The question is how much of what he is experiencing is that and how much is congestion or whatever that will improve with treatment. He's still on iv antibiotics for the line infection. He is scheduled to be seen on the 28th, but I would be so much happier if he could be seen on the 21st since, to begin with, we don't even know if the steroids worked to halt the BOS process. There are other treatments** he could talk with his doctors about -- all pretty strong. None very well known or proven. The most successful one as far as I can tell is a chemotherapy drug. I feel my antsy need to act, to do something, even when there's nothing to do. As if I could do anything to change any outcome. Research. Call the clinic and make sure the follow up is actually scheduled. Fret. Cry.
September was scheduled and known in advance to be a killer month at work for me. Clients want a year-long project finished two months early and we don't really have a choice. Even without out that pressure, there's only so much (not much) I can push out, send on to others, or not do. It's a small company. I own part of it. I have to keep these clients happy and earn new ones: that's how we stay in business and keep the people who work for us, well, working. It's a terrible job for our situation really except that it pays pretty well, is secure (all things considered), and has good health insurance. It holds some promise for a prosperous future, which, honestly, doesn't really seem that important right now. I have a trip next week that I'm terrified to go on and there really is no one else to do it. I miss my old government job, when you could just take a month off if you had too at the drop of a hat (I did when my father died unexpectedly), and while it wasn't considered a great thing to do, nothing bad really would happen to you. Your job wouldn't evaporate while you were gone the way clients can. And no one else would be out of work because you needed the time.
My old house, which we rent out, has renters moving out and some problem with the floor which requires a bunch of worry and attention even though Grandpa DM is handling most all of it in terms of finding the workers, and figuring out the specifics of the problem. It's going to cost a bunch of money that we don't have.
The worst part is I really have no idea if my worrying is out of proportion to the situation or not. I know only this: BOS is what most lung transplant patients who go past 5 years eventually die from. The transplants just don't last forever is the bottom line. Everyone knows this and accepts it in their minds. . .but my heart has been slow to follow. BOS can stabilize and plateau and be fine for a while and then act up again. We were in a plateau for about the past 3.5 years. Now it's acting up. We hope for another plateau, but I have no idea if we're going to hit one, or what it will look like, or how long it will last.
That's really not the worst part. The worst part is thinking of dear Will having to go through all this decline again. Having to think about the specifics of that, for real, as a result of where we are now. As if once wasn't enough. As if the fair price for 8 - ? years is this. Honestly, I cannot think about it without totally shutting down. I can't even begin to write about Liam.
*Some studies say that high does of azithromycin, over time, might recover some function. Will's on that, and has been, except that when I insisted he go to the hospital back in mid-August the not-his-regular-doctor reduced his does. That's, apparently, when all this started; something I didn't find out until today. He's back on his regular, high dose now and has been for about a week. I will lose sleep over this for the rest of my life. Other antibiotics in the same class also are being studied, with some promise.
**This is a partial reference; a section of a google book. I have to try to find the underlying studies. . .. So many of the articles and studies aren't easily available; or you have to pay for them. I think Will's doctor would give them to us, but I have to remember to write them all down and ask. It is really hard to make myself shoehorn in all this research when the last thing I feel like doing is looking up and reading terrifying things on the Internets.
Thursday, September 10, 2009
The kind of rejection Will has is called bronchiolitus obliterans syndrome and it is basically an immune-injury/inflammation-related response that causes fibrosis and obstruction of the small airways. It's a rough diagnosis to receive and we're all still just trying to figure out what to do with ourselves.
Sunday, September 6, 2009
Saturday, September 5, 2009
At any rate. I think Will is really wanting to hold out from the hospital until he is scheduled to be seen in clinic on Tuesday. That's great, except that if he has another high fever I really think he is going to have to go in: (1) he has a picc line, so it could always be a line infection; (2) he was on iv ganciclovier for a week and may well be neutropenic which means any fever is very concerning; (3) he is congested and doesn't feel well, and these things don't tend to go away on their own. Last night I was very worried about all this. Today, I managed to mostly put it aside. Will is really congested; so maybe it's *just* a bacterial infection. We'll see.
We used our special, nifty little candle holders for dinner (Thanks Auntie L!) and after Liam practiced blowing out all the candles. About half way through he figured it out and that was it, all the rest got blown out before you could blink an eye. Darn it, I had pictures to post, but I didn't get them into the computer before the camera battery ran out. I'll post them tomorrow.
*Check out this link -- it's a google book!
Thursday, September 3, 2009
The transplant anniversary makes me feel the same three or four things every year.
First, gratitude. Gratitude for a family somewhere who on hearing what must have been horrible news, some version of your father, or brother, or son* is gone, didn't entirely close up on themselves, but instead reached out. That is an amazing thing. It is a daily object lesson in humility and kindness, and one that continuously challenges me to better live those values. Grateful that Will works to maintain his health and transplant. And for his doctors, and for our families who help us so much. We're grateful for another year.
Second, wonder and sadness. Will and I weren't together when he had his transplant, so I didn't go through the recovery with him. But I know it was hard. And the course lately has been hard. And chemotherapy was awful, as was the vestibular loss, the pneumonia when he had his spleen out, and all the rest of it. Throughout it, Will finds a way to keep on.. At the same time, it is hard, and I wish it weren't so. And the future is, at best, uncertain.
Third, hope. I have so much hope for the research and new discoveries that are happening all the time. That they will help people with CF be treated successfully so they can live long and productive lives without a lung transplant. That they will come up with better ways to maintain transplants, and treat post-transplant complications and infections, or better ways to do the transplants in the first place. It would be great if Will's health could be helped by some of these things and even if it is not, it is so hopeful to think about what they might mean to others.
Finally, I always feel moved to act on this day to somehow encourage others to consider organ donation and to make your intentions known to your family. So, if you haven't already, please do. Whether you choose to donate or not is deeply personal; but if you do choose, please let someone know. Write it down. And register as a donor which, in the NW you can do here.
That's all. Will and Liam are upstairs having story time, and it's my time to go up and do the rocking to sleep now and then come downstairs and enjoy a cup of tea with Will. I'll post more tomorrow with and update on Will's current health complications; he's having a very good day today for which we are incredibly grateful.
*Somehow we know Will's donor was male.
Tuesday, September 1, 2009
Sheesh. Sharks were not the half of it. In the opening scene/prologue the mother fish and almost all the baby fish (they are fish eggs at that point) are destroyed by, something, I'm not sure what, I was too horrified to notice it properly. Luckily Liam didn't really get that part because he was super-excited to be eating dinner in the living room and was focused on whatever we ate that night, I can't remember what that was either.
So, while I'm recovering from the mother fish and all the baby fish being killed and trying to figure out whether to go on with Movie Night at all, the movie starts to unfold with all the brilliant underwater-animation, songs and bright colors. Liam thinks this is very cool and watches intently. Will and I talk with him about the different fishes and what is happening. He cuddles up on the couch with us. It's going well! Then Nemo gets captured by a menacing looking diver and put in a plastic bag and brought to a fish tank in a dentist's office. The Daddy Fish (who Liam also calls Nemo) chases after the dive boat frantically. It is clear that something very bad is happening to little Nemo. Liam is worried but allows himself to be comforted.
The rest of the movie is Daddy Fish and his side-kick Dory running into all sorts of obstacles and some help in their effort rescue Nemo. In the meantime, Nemo is in the fish tank with other fish-tank bound fish, and his part of the story is all about trying to hatch escape plots so he won't be given to the dentist's fish-killing niece as a birthday present. It has a happy ending. Liam watches about 35-45 minutes. We fast forward through the shark scene, which is near the beginning. He loses interest long before the movie is over, but was interested enough to want to watch part of it again the next morning. In general I think it was too scary, or emotionally intense, or whatever, for a two year old, but what do I know.
Since then we've put movie night on the back burner until Liam is older, and I sent the Nemo movie back to Netflix. But Liam still talks a lot about Nemo ("Mee-Mo") and Dory ("Dor'ray"). This morning he started on about them as soon as he woke up and after a few minutes I realized that he was telling me that his stuffed teddy bear was Nemo. Okay. Over the course of the day, Will's mom told me he decided that knit kitty is Dory. They both like to swim by squirming along the floor, face down. Liam is very loving towards them, and has been wrapping them up in his blue blanket and rocking them to sleep. ("Mee-Mo wrock, wrock. Dor'ray.") We are very proud of his creativity and pretend play, and hoping that Movie Night hasn't somehow scared him for life. It will be interesting to see where this all goes. (In the photo below "Mee-Mo" is wrapped up entirely in the blanket and not visible.)
Monday, August 31, 2009
This is a funny book, like Runaway Bunny where the picture are all back and white on one set of pages and in color (mostly bright pink, yellow and navy-ish blue) on the next set of pages. It tells the story of a scottie dog (Angus) and how he finds himself living with a Cat who is allowed to do all the things that he is not allowed to do; and how he wants the Cat to go away, except that when the Cat hides and he thinks she's gone, he really misses her, and is then glad when she comes back. Liam especially likes the parts where Angus chases a frog and where the Cat hides on the roof.
It's funny to see how directly the stories influence his play life. He is all of a sudden very interested in playing hide and seek and peek-a-boo again and I can only think that spending all weekend talking about how the Cat hides on the roof and Angus looks all over for her has something to do with it.
Sunday, August 30, 2009
Colored pictures and practiced sitting on the telephone book and not getting the colors on the table.
That was all yesterday. Today we got up and went to a work-friend's house to play on her beach and see clams in their native habitat, pick blackberries, and climb about 150 stairs up and down (it's high bank). Delightful. Liam was as interested in the forest as he was in the beach, especially the blue jays. Then home and play in the yard with Daddy while Mama pulled weeds and, best yet, leftovers for dinner so no one had to cook!
We're coming up on a big anniversary here this week: early in September it will be 8 years since Will was given the gift of life in a double lung transplant. More on that some time later.
Friday, August 28, 2009
After still hearing nothing from the hospital about the results of his bronchoscopy, and wondering about if they had a plan to protect his kidney-function by giving extra iv fluids or something after his scheduled colonoscopy, I called the nurse-transplant-coordinator on Thursday about noon. They are mostly quite good, but there is one who is a total mess. Never has the right information or units for test results; is always screwing up dosing instructions and just in general does not give out reliable information. So, the one who is a total mess calls me right back; and then when I don't pick up my work phone b/c I'm on a conference call she calls my cell phone; and then when I don't pick up my cell phone she tries to call Will at home and then on his cell phone. Never have I seen the transplant clinic try so hard to get hold of us. Well, turns out that they did not want Will to have the colonoscopy after all. (This information finally reaches him about 30 minutes before he is supposed to drink the yucky drink that starts the, umm, process.) I suspect the instructions had been sitting around in the chart on on the nurse-coordinator's desk for at least 24 hours and she had just not paid enough attention to call. But, that could just be my past bad experiences with her talking.
At any rate, the cancelled the colonoscopy because they found CMV in the bronchoscopy. But she couldn't tell if it was shell vial or active infection. And she didn't know how much. And she wasn't sure the level of CMV in Will's blood. And his regular doctor is on vacation (or something) and all the other doctors are at a conference so, according to her, there was absolutely no one he could talk with to get a better sense of his test results. Nonetheless she was adamant that he must start on iv ganciclovier, immediately. If Will does, in fact, have CMV colitis this is the same medication they would give him anyway, hence the cancelling of the other test. On the other hand, if he doesn't have an active CMV lung infection and if he doesn't have CMV colitis, than he's getting treated with something pretty serious for no reason. No way of knowing right now since there was no one with a clue we could find to talk with at the hospital, and Will decided to start treatment, just in case. He is concerned about his lung functions not bouncing back and is, I think, looking towards anything that might help. So, that's all we know until Monday when hopefully I can track down someone who can really read the chart and tell us what is going on.
Tuesday, August 25, 2009
It's very good to have him home, even as it is distressing to see him still short of breath and still having trouble with his digestion, and not have a clearer theory of what might be going on or (even better) a good path forward for treatment. Hopefully Friday's testing and followup from that plus quick followup with Will's regular pulmonary doctor will give us a better sense of what to expect.
In the meantime, we're very happy he seems to be stable and is home to sleep in his own bed without all the constant hospital interruptions!
Monday, August 24, 2009
In other news: where is my little baby boy and who is this big toddler and how did he get in our yard?
I didn't go to the hospital today, and only spoke to Will briefly (he sometimes doesn't feel like talking much when he's there), so this is all second hand, but here's what I understand:
- Will is still saturating in the mid 90s on room air, so that's great.
- His kidney function is not getting any worse; it's better than it was last week, but not yet back to his usual level. It was about the same this morning as when it was measured yesterday afternoon.
- They finally did the bronchoscopy about 4:15 PM today. "Early." So Will was npo since midnight and not happy about it. No report on the bronch yet except that Will said it went "okay." I just called him and so far he hasn't needed any oxygen or had a fever (both are common for him after a bronch).
- So far, there is no clear explanation for why Will de-saturated so badly when he was home on Sunday and I'm feeling more and more like the bad guy for insisting that he go to the hospital.
- In the meantime, the docs are trying to figure out Will's digestive issues, since if they don't get figured out it will be hard for him to gain weight (which he really needs to do) or stay hydrated (ditto). The test for c.diff was negative. They're considering CMV colitis. Also considering whether it is a new sensitivity to one of Will's immune suppression medications. (This last one sounds weird to me since he's been on these meds for 8 years now and on them with reduced kidney function for at least 2, but what do I know.)
Will's parents were there with him most all of today. Unfortunately, I can't go up tomorrow because I have an all day meeting here that I have to facilitate. If Will's still there on Wednesday I may try to go up early and catch the doctors, but I can't free up my entire morning and so (as it always seems to go), I'd no doubt be on the phone with work when the doctors came by. We'll see. I can keep trying to clear my calendar.
Sunday, August 23, 2009
Will's father is just home for a week-long hiking trip and could pick Will up and take him, luckily. I talked to the Doctor on call who is the same pulmonologist who saw Will last time in the hospital; that's good, since she'll know his case and recent course. I'll update later when there's some real news. For now if people could keep Will in their thoughts, that would be great. He's pretty sick really didn't want to have to go in today. It's always heartbreaking when he leaves.
Updated: Will was admitted. His saturation improved as the day went on and he has been in the mid 90s on room air this afternoon and evening. He has eaten (lots, I'm told). He has been given lots of IV fluids. His creatinine (a measure of kidney function) is down, a lot, from last Thursday, back to 2.5, which is still much higher than Will's usual higher than normal reading, but going down is very much better than going up. (This was expected and the reason the doctors discontinued treatment for CMV and aspergillus last week; but still, it's nice to see it at least sort of work.) Will did not want to be admitted, especially considering his saturation came up and he has no fever. But he is and he will have a bronchoscopy tomorrow "early" which means before 10:30PM in hospital speak, in my experience. (Well, I mean as I've experienced the hospital as a companion to Will; I've never really experienced any of this myself.)
Now I feel bad for insisting that he go, but I really did think he needed to be seen. (Which I still do; but I feel bad because I know he's really unhappy about it.) And I'm glad he's feeling better and I hope he doesn't de-saturate tonight, and that they figure out what is going on, and that he can start to recover and come home soon, maybe even tomorrow or Tuesday. Now on to the million and a half things that need to be done around here.