Friday, June 24, 2011

Day + 365 One year ago today!

Daylon receiving the last of the bone marrow last year
The title pretty much explains it. One year ago today our sweet Caleb had a pop can worth of his bone marrow pulled out from him and place into Daylon. I can't believe it's been a year. In some ways, it seems like just yesterday but in other ways it seems like a life time ago. This has been the toughest year of our lives (especially for poor Daylon). I can't believe everything that's happened. I'm recapping this for you all: In this last year Daylon has not only undergone an intense regimen of chemo and a bone marrow transplant, but has had such severe mucositis that his airway swelled shut and coded, VOD a form of liver failure that causes kidney failure, then kidney failure, a brain bleed which caused a series of seizures one of which was so long, it more than likely caused a second brain bleed which shows as a stroke and caused severe brain damage to about 70% of his brain. His brain stem malfunctioned for a couple weeks and told his heart to shut down. Signed a "Do Not Resuscitate" order. He's had a couple dozen blood infections, a couple dozen skin infections, mucusitis of the gut that lasted for apprx. 8 months and caused severe vomiting . The vomiting and an unknowing respiratory therapist ripped apart his mouth resulting in 2 surgeries to repair the damages. A third head bleed, followed by 3 burr holes drilled into his skull. Then malnutrition to the point of electrolyte deficiency and possible death. I have been told by countless, countless doctors that a healthy adult could not have survived his medical history, more or less an infant with a deadly disease. He did though. There is no scientific reason to support why he has. No scientific reason to explain why he can breathe on his own, not to mention play or problem solve. Since his birth, we have been told over and over the same line, "I'm sorry, but your son will not survive." Do you have any idea how much I hate being called into a conference with a doctor now? The thing is, they've been wrong. He's survived. He's a fighter and one of my heroes. No matter what's thrown at him, it may knock him down, but it doesn't knock him out. I feel so blessed to live my life and get to watch miracles unfold daily. I know that the reason my son is alive is because of the hundreds of thousands of prayers on his behalf from those who love and care about him. Thank you for your prayers. Thank you for raising awareness of EB. I hear all the time about Bible groups that are praying for him, people who've put his name on Temple Prayer Rolls, fasts that have occurred on his behalf by entire congregations or individual people, people who put him on their list for Mass, book clubs that pray, co-workers that pray, children that mention his name in their precious prayers, the list goes on and on. We are so thankful and so touched that all of your are standing beside us in this journey.
  As you all know, the transplant has worked and it's been absolutely amazing how quickly it's worked. We're hopeful that several years down the road Daylon's life with EB will be a memory. Daylon's personalty shines through each day now and we see more and more of a happy, healthy little boy. He's also up to 23 lbs, which is heaven! Just 7 1/2 lbs more to go! Thank you all again!

Monday, June 20, 2011

Sunday, June 12, 2011

A new man

I can't even hardly believe how great Daylon's days have been going. I don't know if it's getting enough to eat, the right antibiotics fighting off the pesky bugs that have been lurking in his system, or what, but Daylon's personality pre-transplant has been back and he's happier than ever! I just love it!!! He's smiling ALL THE TIME!! He's doing these deep little belly laughs that I haven't heard in about a year, he's started talking a little more, he's playing with toys, heck! He's even letting us put him on the ground to play with having a total meltdown. I can pee in peace! Aaaaaaaaaaa (That's the choir singing)! Okay, and get this. He has actually started hugging!! Real, honest to goodness hugging. Before if you asked for a hug he would just rest his head on your shoulder, now without even being asked, he'll open his arms up wide and give you just the cheesiest grin, hug super tight and rest his little head against your shoulder. It melts my heart. =)
  I will say though, with Daylon being so much more alert, giving him his injections of Epigen have become much more difficult. He used to just fuss for a second and then go back to his listless self, but now he fights and cries. He just looks at me with his little quivering lip with the facial expression of, "How could you". Oh, how I hate poking him with needles. The lack of fat on his legs, doesn't help either.
  Back to the good news...
  The blood work has come back from his One Year Check up and (drum roll please!) Daylon T cells are 100% donor and his C3 cells are 99% donor!! Yay!! At his 6 months labs, he was only 70-something % donor and we were becoming concerned that he was losing his engraftement, so this is GREAT news!! Still no word on his skin biopsies, but we're anxiously awaiting the email!
  At this weeks BMT appointment, Dr. Buchbinder said that he feels Daylon's check ups can be moved to every other week! I'm so excited to get two of my Wednesdays a month back! It's such a pain to load everyone up, travel over an hour (sometimes several in traffic, especially coming home), and worry about the five of them touching stuff in that germy clinic. They have babies with RSV, BMT kids, pulmonary kids, everyone, all lumped together in the same waiting room. One word: GERMS. So glad to get a break! Oh, I almost forgot! The reason Dr. Buchbinder feels he doesn't need to be monitored so closely by BMT?  He's gained almost a whole kg (2.2lbs) since surgery! Well, that's about it for the news on this end. Hope you all are doing well. Thank you for your love, support and so many prayers! We couldn't ask for more. :)

in the hospital


Tuesday, June 7, 2011

We're home!

Shortly after I posted last Daylon's blood pressure slowly began to drop and within a couple of hours was in a healthy range. He held great pressures over 15 hours and Daylon was released from the hospital Sunday night! We were able to make our flights for first thing Monday morning! Woo-hoo! As usual, the trip was stressful and frazzling. This time they even patted down Daylon. Having his tummy patted a few days after surgery resulted in many tears. Plus, to save money, Brian flew with a different airline and landed at a different airport (note to self: not worth it), leaving me to carry Daylon in a blanket with his long feeding tube, his little backpack with the machine, the diaper bag, camera bag and the car seat all the way back to the VERY. LAST. ROW. of the airplane. Did I mention that in the process I managed to get his feeding tube caught on arm rests three different times and only knew when I had walked far enough away from the armrest that it was caught on that Daylon yelled out. By the time I got to our seats I was ready to cry along with him. One word: Nightmare. Anyway, after a long day and a good night's rest, we're home! We go to clinic tomorrow (and every few days for a while) to make sure that his blood pressure is under control. Today we're just spending it trying to get back into the swing of things. We'll keep you all updated as we know more!
  Thank you for your prayers! I know that Daylon has made over obstacle after obstacle because he has so many wonderful people praying for him. Thank you! Thank you! Thank you!

Saturday, June 4, 2011

At the hospital stay continues...

Welp, we're still sitting pretty in the hospital. Unfortunately.

Daylon blood pressure has been in the high 150s/110-ish since surgery. This is obviously high for an adult, more or less a 22 month old. He's on four different blood pressure meds without seeing much difference. The renal team was called up to bat again to help with Daylon's care since the kidneys control blood pressure. An ultrasound of his kidneys was done and it showed that Daylon's kidneys are shrinking. As he gets older, he will quickly outgrow his kidneys (especially if they keep shrinking) and he'll need a kidney transplant. You know that sick feeling in the pit of your stomach? Yeah. I've got that. I am praying, praying that by some miracle something happens and this all goes away, but I know that sometimes these things happen. I just feel so horrible for out little guy. This poor kid has experienced so many bad things. Anyway, they've upgraded (I"m not sure that's the right word) his renal condition from acute to chronic, meaning permanent. The PICU doctors have also been called over to our team again. Hopefully with everyone's help, Daylon's blood pressure can be managed and under control before he has another stroke.

new hospital rooms. Every room in the hospital is identical
 The culture from his lungs came back growing a stubborn bacteria that causes pneumonia. Because he's been off and on antibiotics for months, it's probably helped him from actually getting really sick. He's on a new aggressive antibiotic for that.

each room has a 60 inch tv. There are 6 BMT rooms with this big tv and then two small tvs off to the side of it (I have no clue why) and a fourth tv hidden in a pull out wall attached to the bed.
 The culture on his foot came back growing 3 different forms of bacteria. One was staph, another one is some belly bacteria (I have no clue how that is growing on his foot) and the third is a really rare bacteria that I'm told is not normally seen in this hospital. I can' t remember the name, sorry. Anyway, he's on another oral antibiotic for his foot and we're supposed to continue with the bactraban.

At the one year check up they check for a slew of disease and various other illnesses and Daylon's labs came back positive for Hepatitis C. They ordered a recheck and the machine malfunctioned on the results, so a third was taken yesterday. We should get that back tomorrow. If he does in fact have hep C it's probably from a blood product he received. I'm still hopefully that this is all just a mistake.

  The good news is: Brian's here! Yay!

Plus, Daylon had a neuro psych evaluation yesterday and they said that overall, his abilities register at about 13 months. That's great! I was actually thinking that it was closer to 8 months or so. His gross motor is way behind for his age, but his foot has given him constant trouble his whole life, which would prevent him from walking. His fine motor skill and problem solving skill are almost age appropriate and for me that's HUGE! It shows that the brain damage is being repaired and that he's thinking close to like a kid his age. They also said that with what he understands of language and the babble that he's able to make, his speech may be delayed, but it is coming! Woo-hoo! We're beside ourselves with this news! Now, we just need to make him healthier!

 This trip has been a lot harder than we anticipated. I was so excited to get his nutrition under control and now there's several new worries to take its place. Daylon is such a brave little guy. He is poked several times a day and he doesn't fight it. He gets test and procedures done and as long as we're close he's okay. Don't get me wrong, he fusses a bit, but he doesn't scream and fight the way I would have at his age. He's such a fighter and I love him so much.

In the hotel the day before surgery

Sometimes, Daylon reminds me of an little old man filled with wisdom. These expressions are why. He sits like this all the time! It cracks me up!

Wednesday, June 1, 2011

Out of surgery

Wow, what a morning.

Okay, so this is going to be pictureless and short, but I don't want to keep you all waiting...

Eye exam- there is some permenant scaring, but he still has his vision

GI scope- got as far as the esophagus...once she saw that it had a tear, she backed out.  He will have another scope down through his g-tube in about 4 months when the site has had a chance to fully heal.

Respiratory scope- He ended up needing to be intubated so they couldn't see the airways (they go through the ET tube), but they said his lungs looked pretty good considering everything he's been through. There was a thick film covering them so they took some cultures. The doctor said he had no clue what it was, but he's testing for everything. First results should be in by tonight with the last of the results in in a couple of weeks.

G-tube- Overall, it went nicely. There was a lot of excess scarring on and around his stomach but they added a third hole and cut it back.

Biopsies were taken from his hip. Dr. Tolar was shocked at how beautiful his skin looks, but was disappointed to see how skinny he is. He said he is quote, "He's beyond skinny. It should never have gone this far." . He agreed with me that his foot is infected and took a culture from it. I think I forgot to mention this last post, but last weekend Daylon's foot was hurt and the skin just came right off. He never blisters anymore. When it comes off, it just poof! Comes off. Anyway, it's one big mess and it started to get really stinky and red. I tried the usual bleach baths, silver ointments, etc. but they were no help. His immune system is just shot (between BMT and malnutrition) so infections seem to flock to him.

Okay. So that about covers it. His room is super fancy and state of the art here in the new hospital. I kind of miss the homey atmosphere though. Oh, well. We're having fun catching up with all our old nurse and dr. friends. Brian comes in tomorrow (for our portion of the genetic testing)!! I can't wait!

I'll try to post more later.

We're baaa-ack!

I hope everyone had a happy and safe Memorial Day. We had a crazy weekend of rushing, running errands and having fun. On Sunday though, it was all cut short for Daylon and I as we flew from LAX to Minneapolis/St. Paul Airport. We got in Sunday day night and settled into our hotel (the RMH is SUPER booked :(  ). We're staying in north Minneapolis about 10 miles from the hospital and downtown. The hotel is pretty nice. It's small, but that's okay since it's just the two of us. Way to go! I've really missed Minnesota and it's so nice to be back. It is L-U-S-H up here! It's so beautiful and green. I just love the atmosphere. The only thing that would make it better is if Brian and the kids were here. I'm the kind of girl who has not one but two gift certificates to her favorite salon and has yet to go because that would mean leaving her husband and kids for a couple hours. I know it's pathetic but I miss them.
  Moving on... =D
 Daylon's schedule was packed today. We had lab draws at the new hospital (which is sooooo stinkin' nice, by-the-way!!) and his veins refused to co-operate. After several pricks which resulted in a few drops of blood each (not to mention an hour of everyones time), we ended up in Peds vascular where a screaming Daylon was held down and a ultrasound and little shunt were used to fill up the 15 viles they needed. Poor baby. By the end he had had it and I don't blame him a bit. There aren't many one year olds who will let you poke 'em and keep on playing with Cookie Monster, but he did...initially.
  Afterwards, we went to see Dr. Saltzman (his surgeon) who was so happy to see how well Daylon was doing. He kept going on about how great his skin looked and how he was so much more coherent today than the last time he saw him. That really made me happy to hear. Too many cruddy days lately. Anyway, he informed me that he's doing the surgery laparoscopically through his belly button. While he's in there, he's going to fix Daylon's hernia as well, so that's good.
 Next was Pulmonary, Dr. Regelmann. He said that Daylon's breathing is definitely labored and that his lungs are unclear with diminished breathing. Daylon chokes when he drinks his bottle, wheezes, can't sleep more than a few hours without coughing fits and coughs so hard several times a week that he vomits. It's pretty rough. Something is obviously wrong, but they're not sure if it's JEB related or if it's a nasty bug that's refusing to leave with antibiotics or if it's damage from the BMT. The only was to know for sure is to do a bronchial scope but the risk of that is that he could likely bleed in his lungs. If they leave it as is and it is a bug, he could possibly become fatally ill. Rock, meet Hard Place. I signed the consent and Dr. Tolar is going to talk it over with him and they'll decide what to do. Brian and I aren't as educated in these areas as they are and we have faith in them and know that they have Daylon best interest in mind.
  Last, he met with Dr. Erickson who is the GI doc. She showed me Daylon's growth chart. It was embarrassing. Part of me knows that I've tried my hardest to help him and I shouldn't feel guilty, but I can't help it. I do. His weight is not only not on the growth chart for his age, it's like an inch below it. He hasn't grown length wise since November and he's now in the 75%, whereas he wasn't on the chart (really tall) before. We talked about oral feeding and talking and how once he starts eating orally, she thinks he'll start talking. She said that once he gets nutrition in him, his cells will "wake up" and his brain will tell him to start putting things in his mouth to feed the "machine". Nutrition also means more energy with (hopefully) more of a desire to play and walk, a chance for his brain/intelligence to develop and his kidneys to improve. Her goal is to have him at the 50% in weight within 3 months, fully healthy (where his body has replaced what's been taken from other places IE: his bones) by one year. Ultimately, she would like to see his height back above the curve for his age and his weight around the 75%. Hopefully, it's nothing more than an oral aversion which she said, she thinks he'll outgrow around three yrs old.
 His time in the OR will be about four hours. That's a long time to be out without needing to be intubated. I would be lying if I said I wasn't nervous. He's going to have the g-tube placed, the GI scope, an eye exam to see how bad the permanent damage is from his corneal abrasions, his one year biopsies and possibly the lungs and airways scoped.
  Well, that's all I've got for now. I need to start getting things ready for tomorrow. We have to be at the hospital at 5:30am and it's across town. Booo! :) I love sleep. Oh, how I miss it.
  He'll be admitted after surgery so I can try to blog more tomorrow. Please pray for our little man. Thank you all for your support!!

The Internet was SUPER slow at the hotel and I wanted to post pictures along with the text, so I waited to  post this. Big mistake because I fell asleep! Anyway, I'm at the hospital now. Daylon went back at 8am and everything was set up. So far, only the eye dr. has come out to say that there is permanent scaring on his eyes, but they are still working. That was such a relief! Let you all know more later...