Monday, August 31, 2009


Hurray for Henry!!! We officially have engraftment. ANC was 562 this morning!! Haven't talked to the Doc's yet about what we're working towards next but maybe later today.
He's doing so great! Happy and playful. He slept on his stomach most of the night, and he slept very comfortably, didn't move for quite a while, and his breathing was better than when he sleeps on his back. Silly boy! Too cute!
He was sooo excited to have his favorite nurse last night :)
P.S. Thanks for the pacies for chicken toes Katie!

Look at all those teeth coming in! Oh and his t-shirt says "Dad's My Superhero!"

Sunday, August 30, 2009

Still Climbing

Yesterday something was wrong with the Lab draw or they didn't have enough of a blood sample to test the ANC, so we didn't find out what his levels were yesterday, however... today we found out that his ANC is up to 368!!! I am so excited, and so proud of Henry, he's such a strong little boy! He slept a lot yesterday, I think his little body is just worn out after three days of playing hard. On top of which his body is trying to rebuild a brand new immune system, I am sure I would be exhausted too. Got a chance to run to Target with Juliann and family.. thanks for the chauffeur services.. :).. and got Henry some new t-shirts, all size 2T- 4T, and they work wonderfully. He wore his "Dad's My Superhero" shirt last night, and they are so much more comfortable fitting. One of these days they are supposed to measure his height, to see if he's grown at all. Oh yeah, and yesterday afternoon he was laying on his tummy and crawling backwards.. army crawling..he's still working on the forward motion... but I was excited that he wanted to move around on his own. He's definitely getting stronger and I think he's excited he has that energy back, and hopefully some added strength. Only down side to having nice chubbylicious legs.. the walker is a bit tighter fitting.. Oh well, it should work after he gets some leg strength again.
So all in all, we're doing pretty good, great and wonderful things happening every day.

Saturday, August 29, 2009

Sick Days..:(

First round of harsh chemo; cytarabine & cladrabine. We spent the whole month of April in patient and then most of May for round two. I don't remember why he had the cast wraps, I know he had some procedure..and of all things, his favorite blanket was dirty so he was trying out a new one. Rough few days.
Obviously not ALL the sick days.. but a few. He's endured a lot!
So skinny and pathetic. So knows how to work the ladies.

Treatment for RSV in January.

You can see that his very first PIC line was in his right arm.

Our life flight to Seattle.. Private Jet.. nice. ha

Sick?! What?!

Best St. Patty Day Cookie ever!
I was just looking through the pictures today at home much Henry has changed and so I thought I would post them again I conveniently left out all the sad sick pictures.. He totally looks healthy and happy in all the pictures. You would never know he's been in Seattle at a Hospital most of his life! He's my Hero!
Blue eyed Baby

Cute as a bug

Out patient at this point and happy!

We were calling him Moose!


We aren't there quite yet, the goal they tell me is an ANC of 500. They consider that engraftment. Yesterday as you know he was at 170. So far we haven't received a count today, when they are this low they actually have to put the blood sample under a microscope and count them by hand. Not a job my eye's would enjoy. :) But he's doing alright. This morning he's a bit cranky because of fevers. They are going to run more viral tests to rule out infection, but they believe that it could just be his body reacting to engraftment. Another thing to keep in mind they say, is that it won't just jump really fast to 500, some days it drops and others it stays steady, so don't be bummed out if it's lower, it may just take some time. But he has counts and that's incredible. Now we have a new goal to work towards. 500! :) Thanks for all your love and prayers! Much Love. Lisa

Friday, August 28, 2009


The cutest thing ever! I know... he has been so happy the last few days, feeling tons better. Today we had some wonderful friends come and bring ice cream and games! Thanks Bri and Juliann!
One of the games was Walk the Dog, and Henry instantly loved the dogs. He giggles every time we make barking sounds.

This morning he wasn't so excited to play, I think we woke him up too early, too much excitement! And all he wanted to play with was his poster and feathers and the sterile water container. Silly boy.

Then after showing off all of his hats at once, I'm sure to save time.. :) He wanted to take another nap. His favorite is the white one, has his new motto on it.."Life is Good." Thanks strangers that brought it to him. He loves it and actually wears it most of the day. Good practice for when we get to go outside. All in all it's been a wonderful day.

TA DA!!!!!!!!!!!!!!!!!!

Hey Everyone...I have counts!!!!!!!!!!!!!!!!!!!!!!!!YEAH!!!!!!
170 ANC as of this morning. WAHOOO!!
My excitement is hardly contained!!! As you can tell by all the exclamation marks. hahaha Just wanted to share our awesome news with you. Henry's incredible!

Thursday, August 27, 2009

I need some chapstick real bad!...


Day +24 and still no counts (white blood cells/ no immune system)


This is the hat Henry got yesterday, he liked it so much he wouldn't take it off even for his nap.
"Life is Good"
So last night Henry and I were so excited because we were getting a nurse that we really like, Dani, however, they had assigned her to two very busy patients. She was running around quickly trying to get everything done for both patients. I felt bad for her, so I did as much as I could, got his weight, his belly girth, his temp, and his alarms were going off so I shut them off, and then realized that one of the syringes was empty so I just turned the pump off so it wouldn't continue to beep at us.

The problem we soon realized was that first, when I shut the pump off they lose all their information about what was infused and how fast... second problem, some how his cyclosporine that goes in over 12 hours, went in over 1 hour! So they start trying to figure things out... like what side effects should we expect, should he go to the ICU over night for careful watching.. they were all panicked! And poor Dani, bless her heart was so upset and crying. I wasn't very worried honestly, Henry and I said a prayer that he would be alright, and that whatever happened we would be able to take care of it. So I tried to make Dani feel better, but a mistake like that can be very bad if it were a different medication.

Luckily after talking to the pharmacist and our bmt Doctor, they gave us a range of side effects to watch for like seizures, kidney problems, acid levels in the body shoot really high causing dehydration... which means they would have had to pump him full of fluid and no diuretics! UGH that in itself would cause more problems, like respiratory failure or distress. So the PA called the Doctor and said she would get back to us, well the Doctor drove over to the Hospital to come check on Henry personally and to talk to me face to face. He must live really close cause it didn't take him that long.

While this was all happening by the way he had a fever and the GvH rash.. which basically turns his body red and splotchy... and then got nauseated from the medicine. All were potential side effects of the high dose of cyclosporine. Turns out it wasn't that big of an overdose.. see nothing to worry about. :) What he was given over an hour was only twice what is normal. Usually they give people two doses of cyclosporine a day, Henry is on a drip so they can try to maintain the cyclosporine levels in his blood. The cyclosporine by the way is used to treat CMV, the virus in his lungs and liver and such. So really he just got two doses at once. By the time they got everything figure out and the Doc came in to talk to us, the peak of the drug had already happened and he was showing no signs of overdose. He was actually sleeping peacefully and the red splotchy rash was almost gone, thanks to good ol' Tylenol. So what could have been a disaster wasn't really that bad.

I feel bad for our nurse, she's so sweet and felt so bad, and they had her trying to manage two very needy patients, and yes she said she should have slowed down, but I totally forgive her! I am sure she won't ever make that mistake again.

I am sooooo grateful for the sweet peace I feel daily, the Lord has blessed me with peace of mind beyond what I can attain on my own. There is no way I would be able to endure this with out that peace. So when the nurses and Doctors are frantic with worry about something, I remain calm most the time because of the sweet peace from the Spirit. I really believe that's the reason I am so able to cope with all this and to really trust in the Lord, he has carried me through this, and I know most of you think you couldn't handle it.. but you could, with the strength of the Lord all things are possible. I know he hears my simple prayers and he answers them and he is always ready to bless us with whatever we need, so long as we ask for it... and sometimes we get it even if we don't ask. When we show humility and gratitude to the Lord he showers us with love and blessings and joy. Above all I'm grateful for the relationship I have been able to develop with my Savior and my Father in Heaven, and with my wonderful husband and children. What a blessing it has been to be together through most of this experience. Much Love to our family and friends. You are a great strength to us!

Wednesday, August 26, 2009

More fun times...

Saying Hello to everyone..
Tickling himself with the feather.. he tickles my nose and laughs and then has to tickle the nurses nose as well. :)

His frog that makes the funniest Ribit rounds.. cause mommy makes them. :) He really likes the frog!

Getting ready for a nap. He's been awake since 10:30am this morning, and just decided he was tired. He actually wanted me to hold him and rock him for a while before nap time...mommy very much needed that...Now he'll sleep and be awake most the night.. oh well your schedule here in the hospital is never normal! :) That's why they open the cafeteria at 2am.. well I guess and for the nurses working night shift.. but anyways.. you get the idea.

One thing at a time..

We are still waiting for Henry's counts to come back. But everyday something gets better, or under control. He is getting stronger, and playing for longer periods of the day. The Doctors are encouraged by his over all demeanor. How good is he doing you ask.. lets see...

....sitting up playing with toys, stretching and moving around...

...acting silly and trying to figure things how do I get the ball out of there, my arm is too chunky! LOL...

..and yes... His TA-DA is back!!! YEAH HENRY!!! I almost cried to see him do this today. I know his counts are coming back, not as fast as I would hope, but I think it's better for his body to get everything else managed before his brand new immune system has to begin working so hard. So I'm patiently waiting trusting that the Lord is building his strength as His pace. I am overjoyed today!

Monday, August 24, 2009

Pioneer Nursery

Hanna & Mahana and Megan came to see me and Henry, and brought with them a poster from the nursery kids in the Pioneer Peak ward. We just wanted to say thanks!! He loves it and played with it for quite a while. He started tickling his nose and my nose and thought it was really fun.

Again I started taking pics and he cried, but I caught one of him with a hint of a smile. :) Must be the feathers tickling his tummy. Thanks so much girls it was so great to see you!

Last night was pretty rough. Henry has started peeing big blood clots, not sure why, and the rest of his urine looks pretty red. They aren't sure why, so they are doing some ultrasounds today to make sure there aren't any major blockages. That said, they are holding the lasiks until they find out. So this morning he weighed 12 kilos. So swollen.
Bilirubin is still going down, everything looks good besides the peeing blood thing. Hopefully we'll get it figured out.

Sunday, August 23, 2009

Day +19

Well today started off good. Henry's bilirubin dropped to 4, as long as it continues to drop the Doctor will be alright, otherwise I think he's considering treating it as VOD. I have to let you know we just switched Doctors today as well. Most of the Doc's are trying a two week round, some still do the 31 days. It's so hard to transition to a new Doctor in the middle of everything. They don't know Henry, except for what is written down or what the other Doctors say, but they haven't really experienced Henry, and with out that you can't really know how to treat him. I'm trying to be patient and allow the Doc to do his job, and perhaps he'll have some good insight the previous Doctor did not. The pathology report on his liver biopsy hasn't come back yet, might take a few more days. He plays for a few minutes every now and then, and I worry constantly about his loss of strength and muscle, just laying in the bed all day. So I try to get him out of the bed for small bits of the day, but most days he's too uncomfortable. Those of you with young ones, measure the size of their belly in extend the measuring tape to 63cm...and that's how big Henry's little tummy is just to give you an idea.
So this evening Henry was interested in his toys and was a bit more alert. So we played with his 'Pooh & Tigger' balloon that has helium in it. He was laughing and smiling and having a great time. It was so good to see. We try to keep him active and playful like that as long as we can. However tonight he started having a bad coughing fit and was dry heaving.. and unfortunately it was so violent that his NG tube, that usually goes into his nose, came out. Well actually it was a good thing. The IR doc's that put his NG tube in during surgery put it too far in; it was coiled up in his stomach. They had it in at 53cm or something and it's only 32cm to his stomach. So it may have been causing more irritation to his stomach. The nurse was checking placement, which involves using an empty syringe to draw out the contents of the stomach to make sure you're in the stomach. Anyways she got a ton of mucus to come up, which means it was definitely in the right place and it explains why the poor little guy is puking so much mucus. Ugh. So at the end of his fun we had to replace the tube which was not a happy occasion! He is getting too strong, he can shove my hands out of the way a lot easier. I guess he can't be losing that much strength!! We're so hopeful that his graft will start to grow and that his liver will calm down and be fine. One bad choice can cause major complications so I'm a bit nervous to say the least! Sorry all the posts are at 1am! Henry has odd sleep hours, not that it matters when you are in patient.
Oh yeah and Happy Birthday to my baby girl, Elizabeth!!!! She turned 3 today! She called me and told me on the phone that she was "a country girl." Twang and all. Sooo cute! She was asking my mom what Grandpa's name was, so my mom said "Larry" well I guess Elizabeth started laughing and said "Larry?!" And kept laughing. She seems to be doing alright, keeping busy and having fun being a country girl. Can't wait for her to get back. Miss her so much.

Saturday, August 22, 2009

Catch Up

Every day the nurses have to change out the lines, yep all those lines go into Henry every day.. he's only on about ten to twenty different meds! Our nurse Julie loves it because it's like a puzzle trying to hang them and hook them up in some sort of order.

Just hangin' out with his snake. Spiked a fever and the red rash was flaring so we had to try and cool him down and help him relax.

Just after surgery Aug. 20th, 09. The gauze is covering up the gaping hole where the first Hickman line was, and on his left arm is the PIC line, double lumen, and very drugged. Today we dropped the Morphine a bit because he would sit for a few minutes and then his eyes started closing and he acted drunk. :) But doing well over all.

Sponge Hat from our good friend Ben. Thanks Ben it fits perfectly! And Henry loves it. He is definitely a hat boy, and very self conscious about getting his picture taken right now.
Aug. 21, 09

My Boys

Pre transplant... Pre Hair Loss...:)

Joel thought it would be funny to shave his beard and his head. He was hoping to come back late enough that I would be in bed asleep and could crawl into bed with out me noticing. Then when I woke up I would freak out because some weird man was in my bed! haha
Aren't they cute! The Doctors thought maybe I followed suit and shaved as well... Nope. Not that brave. Silly Boys.

Thursday, August 20, 2009

Elated.. if that's even the right word!

So Henry had surgery today, for a few reasons: first to remove the central line, because it was infected, then to do a liver biopsy and to replace the NG tube. They had to intubate him again because he's been coughing a lot and they needed him to be perfectly still in order to do the biopsy. They went through his veins, from his neck down to the liver so they wouldn't have to poke him and risk bleeding out, because his platelets were low. Pretty cool. Anyways, Joel and I were trying hard to fight for Henry NOT to be intubated, we didn't want to visit the ICU again. However, the anesthesiologist was adamant that he had to be, but promised she would do everything she could to get him extubated after the procedure.

So after a few hours passed our pager went off and we ran down to the Day Surgery desk, waited to talk to the Doctor. He explained that the procedure went very well and that they were able to do a few extra tests on his liver, which was important to rule out certain possibilities. Then the Doctor asked the receptionist to find out where Henry was and if he was being sent to the ICU. She made several phone calls... they seem to lose track of patients very easily. Mostly because he was a last minute add on. So she tells us that yes he's going to the ICU. We were a bit sad, and I have to admit when we left Henry before surgery I actually was overwhelmed to the point of tears. I was sad for Henry and I just didn't want to go to the ICU. So I was definitely sad Henry was going to the ICU but I though, maybe it will only be a few days again. We started walking to the ICU and a nurse stopped us and asked us our last name. We told her, and she said "oh I'm glad I asked you your names. I have a message for you. They made a mistake Henry is still in recovery but he's going back to the floor." Oh my goodness I was elated!!! I hope that's the right word. I was excited but hesitant because they weren't for sure. We walked with her back to the recovery waiting area and waited very anxiously for a decision. Finally they said, he's till recovering but he's going to the SCCA unit so you can go wait for him in the room. I again almost lost it!

Oh and before going to meet with the Doctors post surgery, I said to Joel. We haven't even stopped to kneel down and pray to ask the Lord to allow Henry to come off the ventilator. So we prayed and went. Immediately upon returning to the room I said we need to kneel down again and thank the Lord. So we did. It has been one of the most emotional days thus far. We are still waiting for Henry to get back to the room. But my heart is overwhelmed with the mercy of the Lord. He has the power to change things in a second and if we are willing to trust in him and be willing to do his will, how great the reward! Thank you for all your prayers. I will definitely post some more when he's back in the room. He is blessed with strength the Doctors are not able to comprehend. They do not realize how many people are praying for Henry! I cannot do anything else today with out thanking the Lord for his goodness! I was talking to a friend who completely summed up my feelings, "We may not get the big miracle, but I have seen millions of small ones every day." There is no other explanation for Henry's strength, but that the Lord is helping him through.

Wednesday, August 19, 2009

Today's Smiles

"Ta-Da" After wearing them for a while Daddy decided it would be more fun to blow one of them up. Then he colored on it with marker.. that didn't dry so Henry's hands and arms became fusia.
They came a little later in the day but they still came. He had a rough day, but this evening he sat up and played with some gloves and really liked it.

Got a little tuckered out trying to get his rings on and off his arms. Can't reach his legs anymore so they mostly stay on his arms. Belly's just too big, all the prego mom's out there know exactly how you feel Henry. :)

Henry decided to play doctor, since he was the one with blue gloves on. I'm not sure what exactly he was inspecting, but just for future refrence these gloves don't taste very good.

Day 16...

(Henry's holding onto his snake that Daddy bought for him, he loves cuddling it like a body pillow)

Okay to date, here's what's happening...Henry's liver has no signs of VOD. VOD is 'veno-occlusive disease' basically the small veins in the liver get blocked. It's marked by 'weight gain due to fluid retention, increased liver size, and raised levels of bilirubin in the blood.' So I understand a little why they are constantly concerned...Henry has all of those symptoms. Ha. I guess he might have a few of the symptoms, but no blockages. Today his bilirubin dropped down a bit so that is really good. Yesterday they were discussing a possible biopsy of the liver, instead they decided to start him on his formula feeds again, just 5ml's an hour, but some of his issues might also be a reaction, or irritation rather, from the TPN he's one. (TPN is liquid nutrition put through the central line, gives them the nutrition they need with out causing pain if his gut isn't happy. Which is highly common in transplants.) So I'm of the mind that it worked, however he's still irritated with the feeds, throwing up a bit more. So we'll see how long that lasts.

The other major issue we are dealing with is this lactococcus bug in his blood. The antibiotic they had him on cleared his blood, but it grew back. Potentially it could be a different strain of lactococcus, but we'll find out later today. If it is the same bug, he'll have to have his line removed completely, and they will put in a PIC line, temporarily until they can replace the central line again. Ideally they would wait until the blood cultures come back negative again, to make sure the bug is gone; however, they may not be able to put all his medications and nutrition through the PIC line, some things aren't compatible in the same line. So I'm hopeful that it's a different strain or whatever they call it. If the line is replaced they may go ahead with the liver biopsy and do it all at once, which would mean being intubated again which would put us back into the ICU. UGH!

Day 16 and still no counts. I am trusting in the Lord, and thinking that perhaps it's better for his body if things get taken care of now before the graft comes in... and then maybe it will mean the graft will take easier and quicker. But that's just me trying to be positive. :) It can take up to three weeks so we have a few more days to wait.

So that's what is happening here. I have stared reading Anne Perry's Inspector Monk books, and I really enjoy them. I have read her Thomas Pitt books, all of them, and now onto her other series. So hopefully I can find a few more to keep me busy while Joel is gone. I love having a good book to read because I wake up in the morning and think "today is a great day to read!" hahaha So all my extra time is used up in reading. Well some of it anyways. Alright Joel's making fun of me for writing another novel on the blog. Just wanted to keep y'all updated. We'll post again if he has to get the line replaced. Much Love. Lisa.

Monday, August 17, 2009

Small & Simple Things

Not a recent pic, but I just thought it was cute.

Alright I can't help being a positive person. This morning Joel sent me a text while I was running..."Henry has to have surgery today, line needs to be replaced, better come over soon." UGH. I called him and we talked about what was going on; one of Henry's two lines wasn't working. They use a medicine called TPA that breaks up the blood clot so they can access the line again. So after talking to Joel I started praying in my mind as I ran, praying that we would be blessed with a miracle today, if not I just prayed that things would some how work out for him. So I kept a prayer in my heart and by the time I got to the Hospital the IV nurse was there ready to try again on his line. And we were blessed with a miracle. The medicine went in and the line was able to be accessed. Henry also got an ultrasound on his liver and spleen and kidneys this morning to see if he had any signs of VOD. VOD is a sign that the liver is clotting and not functioning, they wanted another look because his bilirubin was higher today again. Another blessing came our way, no signs of VOD. His lungs are positive for CMV and because they didn't get an actual tissue sample, they can't know whether it's actually pneumonia or just a trace from his blood. The problem with CMV is that it can quickly become systemic and get into his bone marrow and cause problems with the graft, but if they treat it, the medication can be problematic for the graft as well. The eye doctor came in today to test his eyes, CMV can also damage the eyes.. fun little virus I know. However another blessing.. no signs of it in his eyes.

In the Book of Mormon the prophet Alma teaches us that by small and simple things great things are brought to pass. The Lord works small miracles in our lives and great things are brought about. So even though we are dealing with a lot, we are being blessed with incredible miracles each day. We can only deal with one thing at a time and continue to trust in the Lord. What an instant increase in faith and hope!

Henry is breathing easier on his own, the oxygen was drying out his nose and causing nose bleeds, so he was switched to the blow-by again, thank goodness. He smiled today and laughed a little too, he likes to honk mommy's nose. He sleeps a lot but he definitely needs the sleep. Right now his eyes are still very dilated and will be until tomorrow morning probably. He isn't so excited about that, so we keep the room really dark for him... Joel loves it! Some times I can't believe how opposite we are! The Third Ward is taking very good care of us here, they assigned a couple of sisters to come and visit and help us with whatever we need. They are going to start bringing dinners a couple times a week which is great! We are so grateful for all they have done to help support us while we are away from home.

Elizabeth is doing well at Granny Annie's but misses mommy and daddy. We are trying to Skype a bit, yesterday she was really sad when I talked to her because she wanted to come home but she didn't know her way, that made me cry. I hate having her away for so long, but since she's sick it's better for her to be at their house. Soon enough she'll be back.

Much love to you all thanks again for all your prayers and love!

Sunday, August 16, 2009


First I wanted to relay something the Doctors talked about the other day. We were in rounds and our Doctor said that Henry is incredibly strong. We all know this already but it was good to hear her say it. She said that they keep on beating him down and he recovers better than they ever expect, Henry continues to surprise them. They are in awe of his strength and ability to recover. I know the Lord is giving him that strength.
I started thinking about the Nephites in the Book or Mormon; in 3 Nephi Christ visits them and teaches them and blesses their children. After a few generations they lose faith and disbelieve what their fathers are teaching them. Many times we wonder how they can forget so quickly, and yet in my experience the Lord is very quick to show us how we are so quick to forget in our own lives.
We were worried about the procedure and Henry being on the ventilator and not coming off, and when he did come off it, with out any complications, we were excited. A little while later I was on to complaining about not being back down on HemOnc. All too often I spend a few minutes in gratitude and then move on to complaining about what hasn't happened yet. Maybe it's the mind set here, you get to one point and you immediately move to the next, it's the only way of passing time. But I was quickly made aware of how quickly I forget to be grateful for all that the Lord does for me and my family. So I want to let you all know that Henry is doing great, he's off the ventilator and happy, has play time during the day and napping with out needing morphine to put him to sleep. On top of all that his bilirubin is dropping, which is awesome, no VOD. There is much to be grateful for, and I want to make sure the Lord knows and all my friends and family know that I am eternally grateful for their prayers and support. You are giving Henry the strength he needs to overcome this; you strengthen my faith every day and I AM Grateful to the Lord, with out him none of this would be possible. He loves us, and he knows each of us and what we are suffering with or overcoming, he knows how to succor us because he died for us, and atoned for all our pains and weaknesses. We are nothing with out Him. Hopefully I will be better at remembering the Lord every day and each tender mercy he bestows on us. I don't want to so easily forget the blessings and the good things about this experience.
Much love to you all. I hope you have a great Sunday. We should be back down stairs this afternoon, but if not...we'll adjust. :)

Saturday, August 15, 2009

Rough Day

Yesterday Henry had a procedure done where they placed a breathing tube in and took small samples from the bottom of his lungs to check whether he had a viral or bacterial infection in the parts of his lungs he has not been using. Since his belly is so large he has not been able to take deep enough breaths to use his full lungs. Many of us can relate if we think of the few hours after a good Thanksgiving meal. In order to do the procedure they had to sedate him fully and use a medication that paralyzes his body temporarily. This made it necessary to be on a breathing machine overnight. The Doctors wanted to leave him on the machine and kept giving him more Morphine to sedate him so he would not mess with the tubes going down his airway. He kept throwing up and choking on his spit and vomit. Our nurse called for more Morphine to put him under again and I finally had enough I told her "No" and said I wanted to speak with our doctor before we sedated him any longer. She was upset but I didn't care, The doctor asked for a CT scan before we had the breathing tube removed and asked that he be sedated. I told them he had recently had 2 CT scans and did fine without sedation. I think they were upset a little because it made their life a little harder, they actually had to watch him with us instead of just sedating him and letting the computers watch him for them. In the end he was perfect for the CT scan without sedation and afterwards I immediately started my campaign to get the tube removed. Finally at about 2:45 PM they just removed the tube and so far he is breathing on his own just fine. He is getting a little Oxygen to help but he is much more comfortable and taking a nap now. Sorry if it seems I am ranting and raving about nothing but sometimes Parents do know what is best for their kids. Why a nurse who just met him 2 hours ago thinks she knows what's best I don't know. J.

Friday, August 14, 2009

Funny Tidbits..

Henry looking at his bag of collected hair. I didn't get a good chunk before it all fell out. Oh well.
I brought Joel breakfast yesterday morning and all Henry wanted was the tin foil. And he refused to let me throw it away. So silly.

The hair in the back disappeared first and now he just has wisps..definitely going to shave it today so it looks better.
The Doctor came in yesterday to tell us that the bacteria in his blood was the Streptococcus strain lactococcus...lactococcus is found in dairy products, and his bug specifically is a type of cheese lactococcus.. which cheese you ask?... Brie. I'm not sure how that happened.. but all we care about is that the antibiotics worked in killing it off. I would have though it would be the cheese whiz stuff found in Ritz bitz snacks.. those are Henry's favorite. Kind of weird.
Today Henry is having the BAL done, test on his lungs, to find out if a bacteria is growing in his lungs and what it may be. Hopefully it will be nothing and hopefully he'll be able to recover quickly from the ventilator. The Doctors are pretty sure he'll remain on the ventilator for a while but I think he's much stronger than they give him credit. Not sure yet what time the procedure will be, he's an add on so whenever they have extra time they will call us. Joel gave him a blessing last night and although the Doctors are extremely concerned I feel at peace. We are trying to have greater faith in the Lord and his plan for Henry. It does get hard, but I KNOW he's watching over him and giving us strength. We'll keep you posted. Much love to you all.

Thursday, August 13, 2009

Progress Report

Joel and I will some day print all these posts into a journal, with that in mind I have to report on how Henry is doing truthfully. I have a tendency to make things sound better than they are so that those at home don't worry too much. Today is Transplant day plus 10 and Henry is battling a lot at once. He has a bacteria in his blood called lactocaucus, something they haven't seen, he also has CMV a common virus that can be very detrimental with out an immune system. They are concerned because his bilirubin is increasing daily, his eye's are starting to turn a bit yellow.. all common of jaundice. The scary thing right now is that the Doctors are concerned he has VOD, which is basically the beginning stages of liver failure. When the liver fails, the kidney follows and then the lungs. Which inevitably leads to loss of life. The Dr. isn't concerned at the point about complete failure, but they are keeping a close eye on him. With his liver and spleen being enlarged and his body retaining a lot of fluid, there is a great deal of stress put on the lungs. They compare his lungs to a sponge, that is normally wet and full, however, when you don't take deep full breaths for extended periods, parts of your lungs dry up and become like a hard dry sponge. Their concern is that infection can be hiding in the dry portions and there isn't any way of truly knowing. All that said the Doctors are all impressed with him and how strong he is, enduring so much pain, and continuing to breath on his own, when his lungs don't have much room to expand. He is still on HemOnc floor, not distressed enough to go into the ICU, which is great. So although things look hard right now we are still have great hope he'll pull through. The pulmonary doctors came in yesterday to talk to us about his lungs and reassured us that his breathing is probably affected by his large organs and the virus infections. They aren't concerned about infection in the lungs at this point.
His hair is almost gone, a lot of the day he whimpers and cries in pain, but he is very strong and has happy moments too. He plays when he can and we try to give him enough medicine to control the pain which means he sleeps a lot. But I would rather he slept than had to tough out the pain. Although I know he's capable of that. Whatever happens we know that Henry will be alright, I asked him if he knew how many people were praying for him and he shook his head yes. So he's aware of your love and prayers and faith and I'm sure he is eternally grateful!

Wednesday, August 12, 2009

The Day Finally came...

After a year of Chemo I was sure his hair was stronger than any chemo... well of course I was wrong and I didn't think I would mind him losing his hair but it's so beautiful! I was playing with his curls in the back and a huge chunk came out! So I ran and got the camera to take a picture of his lovely locks before they all fell out! I know very silly but we were both a bit upset... He didn't want the pictures.. but I had too! His hair will probably grow in a different color or with out any curl! Such is life.. here are a few more pics of his hair.. I know I'm silly but that's just me.

My hairy boys! Joel said it was time to shave our heads too but I said yeah right! He is a baby still... no one will know he lost it.. they'll think it's just taking longer to grow in, sorry Henry but Mama's head is not that pretty.. she definately needs hair to cover it!