Day 67: T+67

Monday came with some changes. Eric's platelet parameter was lowered from 75 to 50 as well as moving the platlet and Hermatocrit checks to every 12 hours instead of every 8. All this could be done because Eric has not had any more bleeding, and the traces of blood in his stool are less and less. Eric still has extra fluid on him, so they are continuing with the dieretics to help. 

Eric's lungs are holding up well and improving from the pneumonia that was found recently. 

It continues to get harder and harder to stay in the hospital. It's hard for his caretakers but especially for Eric. The interruptions makes it impossible to have any decent rest. Eric's feeling more tired and exhausted than ever. Please pray that he can have the strength,  emotionally and physically, to make it through this challenging time. 

We don't have any concrete answers on what we are looking for to know Eric's ready to go home. We have scheduled a conference tomorrow with one of the program director doctors to get answers and directions. Until tomorrow I know this has and is happening:

Jamie

Day 66: T+66

Another weekend day. Another day where not much happens to move forward. The surgeon did recommend to the BMT doctors to start Eric on a medication called octreotide. It is supposed to help with the last bit of bleeding as well as his diarrhea. It was decided to start him on the octreotide. In the first couple hours I could see a big difference because Eric didn't have any diarrhea. Yahoo! 

Other than that, Eric felt exhausted so he:

 

And I:

While the rain turned to snow! What a crazy weather day. 

Jamie 

Day 65: T+65

Moving rooms is fun to do, fun to do, fun to do!

We got offered the best room back (the one we had when we got discharged the first time), so we took it! Eric's first words when we walked into our new (old) room were "wow, this is really big!" And that's the truth. Our old room was so small and cramped that it makes this room feel like a mansion. The bathroom alone is at leat twice as big. We are sure lucky to get this room back.

We also upgraded Eric's bed. His hips had started to hurt him (only took 65 days...I would've had problems after one night). Kim and Vicki came to the rescue and brought up a memory foam pad and Eric's in sleeping heaven now! Thanks Kim and Vicki!

Other than that it was a normal uneventful weekend day. Nothing changes on the weekend (well unless something was to happen with Eric). Eric did get a two hour nap, which is rare. 

Keep hanging in there Eric. I feel the end of this hospital stay is around the river bend!

Jamie

Day 64: T+64

Eric's billirubin has gone down. Yesterday it was 3.6 and today it's 2.5. We hope the trend continues that direction and that we can put off surgery to take out his gallbladder. 

Another day and another chest X-ray.  Another day of answering the same questions to every doctor who comes in. Eric is toughing out the hardest part of the hospital: the repetitiveness of the whole experience! 

Hang in there, boy! You are doing so well. You will get over these obnoxious hurdles and into the next phase of recovery. I love you!!

Eric enjoying the gourmet delights of jello while catching some basketball. 

Jamie 

Day 63: T+63

I walked out of the elevator to see Eric out on a morning walk! This boy is working hard. Go boy go! 

Another day with not much more to report. They are finding traces of blood in his stool (by a stool test they do). The GI doctor thinks it is probably just some oozing that is happening. 

The surgeon has been a regular visitor in Eric's room the past few days. The talk of surgery has moved to his gallbladder. We have been told that Eric will need his gallbladder out because of the pancreatitis/gallstone in his duct situation that happened that readmitted him to the bone marrow unit. Eric's billirubin was high today, so that brings more concern to the gallbladder issue. 

Please add to your prayers Eric's gallbladder. We need it to behave itself for a little while. The longer the better, because his new immune system will get stronger and be able to recover better from a surgery. 

Thanks for all your love, prayers and support!

Jamie 

Day 62: T+62

We made it!!! Noon was 72 hours with no bleeding. And it has continued to be a blood free environment up here. We couldn't have asked for a better miracle. We know that the miracle came straight to us from the heavens above and we can't be more grateful. Add it to the long list of miracles along this BMT journey. Gods love has been with us and continues to carry us along this difficult journey. Thank you to the many, many, many people who prayed in Eric's behalf to have the bleeding stop and stay away. My faith is continually strengthened everyday from seeing the faith of so many. So thank you. 

Now we slowly transition back to eating, drinking and taking oral medications and see how it goes. Please continue to pray that he won't start bleeding again and that he may continue to heal. 

(A green burrito sleeper!)

We had another day at the hospital. We watched the movie Frozen and were singing 'let it go' the rest of the day! 

Eric got off of NPO and onto a clear liquid diet so the first thing he did was drink I've water! Check it out below. :)

http://youtu.be/trvgy2nbLkg

Climbing back up the stairs one by one. One day and one step at a time until we bust Eric out of here!

Jamie

Day 61: T+61

Back at home in the BMT unit. It's strange, but this place really feels like home now. I know where things are, I know most of the nurses (and some have become great friends and support to me!), and Eric feels comfortable here.  If we can't be at home, then we will take the comfort of being back in the BMT unit!

It was an uneventful day (which is exactly what we want right now). Eric had some decent sleep last night for the first in a while. He was able to take some refreshing naps and do some of the other 'fun' things. 

We are now crossing the 48 hour mark with no bloody stools! Here's to more normal poop celebrations. Tomorrow at noon we are on our way to being safe. Just because he reaches the 72 hour mark doesn't mean we are out of all the scariness. But it means we are well on our way. Keep praying for Eric that he may be blood free for good!

Thanks for all your prayers, love and support! We couldn't be more grateful.

Jamie 

Day 60: T+60

No bleeding since yesterday at noon. No bleeding means we don't have to do one of those three options. Here's to Eric's body stopping the bleeding with the assistance of 24 hour running platelets and a 24 hour protonics drip. Those are the two things that have changed and they seem to be working! 

For now we are hope the bleeding has stopped for good, but we have a game plan if it comes back. Let's hope it doesn't! That would be our miracle! I already count it a miracle that he's gotten through today without bleeding! 

The GI doctor is looking for 72 continuous hours of no bleeding to feel pretty confident that area has healed and won't bleed anymore. 

In the meantime, they feel that Eric is stable enough to move back upstairs to the BMT unit! Goodbye ICU! Eric couldn't be happier. The ICU is a hard place to be because you have more wires and stuff on you all the time. So everytime you move or get up out of bed you have a million things to take off or adjust. Come shift change tonight, Eric's back to the BMT unit! Woohoo!

Although we are not out of the water, it's nice to be on our way. Every hour with no blood is one closer to his healing.  Who knew we would ever be so excited about normal looking poop. 

Eric, here's to healing and moving out of the ICU! You got this! We will keep counting the hours until we get to a place where you are healed. I love you!

Day 59: T+59

 Deja vu! Another 10pm red blood cell scan. Another hunting to see if they could catch the active bleeding. Good news is the third time is the charm and they found the place it's bleeding. It looks to be in the same place as where the GI doctor saw it, in the duodenum. 

How to solve this bleeding now becomes the problem. 

All the doctors met and put all their heads together and came up with a game plan. After talking they decided on 3 possible solutions. 

This afternoon we met with them and the three options are:

1. Angiogram 

They can go in through his veins to the place they think is bleeding (because it's believed to be at the end of a vein) and stop it there. 

Downside: it can be ineffective if they don't get close enough to the place it's bleeding (it's a lot more complicated than I'm explaining it). The veins are more complex than we think. Just suffice it to say that it's hard work to find the correct place. 

2. Surgery

The surgeon met with us a explained how she would do the surgery. A lot of it is game time decisions (being able to do the surgery laparoscopically, if there was any scar tissue in the way from past surgeries)

Downsides: There are SoOo many unknowns. Will they be able to do it laparoscopically? Will they encounter scar tissue? Will the surgeon find the correct place it's bleeding? Is his new immune system to a point where it can handle a surgery? Possible infections and being able to prevent or stop one that comes.  Having to intubate him and the risks there because of his existing lung concerns. The healing after the surgery. You get the idea.....

3. Endoscopy

This would've been the first choice if it wasn't for the stricture he has. They were able to dialate (which pretty much means tear- but gently done) the esophagus last time. But it's been only 6 days since the endoscopy, and not enough time for it to heal and dialate again. 

Downside: Having to dialate the esophogus again and perforating the esophogus. Perforation of the esophogus is life threatening to a healthy individual. Therefore for Eric it's even more of a risk. 

Obviously all of this can be prevented if his bleeding stops on it's own. They have Eric on a 24 hour platelet infusion (to keep his platelets above 100) and protonics that will hopefully help to stop the bleeding hopefully. He hasn't had any blood in his stool since around noon. 

Maybe the miracle we are on the lookout for will be that his bleeding will stop all on it's own. The GI doctor has said that if Eric can not bleed for 72 hours he is probably safe from any bleeding. Pray that the bleeding may stop on it own. 

If the bleeding begins again the first and best option, the angiogram, will be done. And if that's what happens we need it to work because surgery is just not a good option. 

Until then we sit, wait and pray!

We love you, Eric, and are going to help you through this! ❤️❤️❤️

Jamie 

Day 58: T+58

Eric didn't get to sleep until 2:30 because of the scan. At 4am he asked for some medicine to help him sleep better. He varied between bloody stools and ones that looked closer to something normal through the night. 

10 am they had him do another red blood cell scan to see if they could see an active bleed. 

(When he got back they had given us a bigger room):

He had a few moments of peace and during it one of his favorite movies was on:

12pm it was decided that the bleed was probably coming from his lower GI and to have a colonoscopy to have a look. The colonoscopy found no bleeding, and good healing from the biopsy sites from the last colonoscopy. 

Since he was already sedated for the colonoscopy and there was no sign of an active bleed it was decided to do an endoscopy. The doctor easily went in with the small scope first and found two sites that looked like they were the culprits of bleeding. At the time he did the endoscopy there was no active bleed. He attempted to fit the instruments through the scope that would help him put a clip on each of the sites. None of the instruments would fit down the smallest scope. He then attempted using a larger scope (the one he used AFTER dialating Eric's esophagus last endoscopy) but it wouldn't fit. The doctor didn't want to force it in fear that he would perforate Eric's esophagus. Perforation of the esophagus is life threatening, even to a perfectly healthy person. 

So that was done, he went for his first walk around the ICU unit and had a much earned sleep. 

This boy is totally sleep deprived. Not to mention his body feels yanked in every direction.  He can't get comfortable. 

Please pray for him to be comfortable. Pray that he may be able to rest. Pray that this bleeding may stop. If the bleeding can stop for 72 consecutive hours we can feel pretty confident that it's healed. Pray that Eric may be granted periods of peace away from worrying. 

We are waiting to see what the next plan of action is if the bleeding returns. 

I love you so much, Eric! I'm not going anywhere and I'll keep fighting along with you. I believe in miracles and know that our Father in Heaven is watching over you. He can give you (us!) the miracle we need. Who knows what that miracle is now, but let's keep looking for it together. Here's to another day on this journey we call life! Thanks for being a wonderful husband and friend. Best friend in fact. Best friends for life and eternity!!

Jamie 

Day 57: T+57

ICU. 

Eric had an ok night and morning. Noon rolled around and he had a bloody stool, but only a small amount. 

12:30pm another bloody stool, but another small amount. 

The GI doctor came in shortly after the second bloody stool. We told him about the recent comeback of blood. He was concerned but thought maybe it would stop again by itself. 

1:00pm another bloody stool and A LOT this time! Bright red blood too. To the scary amount. 

I went and found the nurse. She looked at it and immediately went to find the GI doctor. We found him, he came in the room and the decision was made to take Eric to the ICU. 

There were tears. Major scariness. The one place we've been fearing of going. I called Kim and Vicki to come up and called and told my mom. The nurse explained it was for safety that we were going to the ICU. Eric could be watched closely and helped better in the ICU. We prayed, Kim gave Eric and priesthood blessing and off the ICU we went. 

And he got set all up in the room down stairs: 

After being set up in his room down in the ICU he was given four units of fresh frozen plasma to help his INR (the rate his blood clots).

10:00pm he was taken to get a red blood cell scan. They pull out some blood, tag his red blood cells and watch them via an MRI-type machine. They are hoping to be able to find the source of the bleeding this way. 

It was a hard day. We are concerned that the source of the blood can't be determined. But all the doctors are putting their heads together. Please pray they can find the source of the bleeding and then be able to help stop it in a timely fashion. Eric is doing all that he can and going through so much! But we know our Heavenly Father is a loving Father and will continue to watch over, protect and comfort Eric and us. We just have to continue to have faith in Him and His plan for us. His plan is always better than ours. I've seen it over and over again. He will watch over all of us. 

Thank you to everyone who follows and reads this blog and for the love and support you all have been to each one of us. I know each and every one of you are the Angels being sent to help us along this journey. May you all be blessed for all the good you are doing. We couldn't do it without having the great support group we have! We love you!!

Sad faces for today:

Day 56: T+56

The bleeding may had stopped!! He hasn't thrown up blood and it hasn't been in his stool all night and through the day. Let's keep our fingers crossed.

It was a day of sleep, walking, getting some platelets, and receiving a diuretic to help take off some of the extra fluid. 

Eric is really quite uncomfortable because of the extra fluid. He did a great job at doing all the things he needs to do. 

One of my favorite parts of the day was getting to FaceTime him before I went to bed. 

Day 55: T+55

Last night was a rough night again. More units of blood were given through the night to keep up with the loss of blood. He threw up less than the night before. 

During the day the stool turned from a brighter red to darker red and he didn't throw up at all. (Yeah!) Things started to improve as the day progressed. 

You can bet there was:

Mummy sleeping! 

We broke up the sleeping with a gift from a fabulous friend:

Although everyone else has already seen this movie, we haven't! We are excited to catch up with the rest of the world. And you can probably bet that I'll jump on the 'I love Frozen' bandwagon after I watch it. I already love the song 'Let it go.' (I really like the Alex Boye version). 

The GI doctor came in the afternoon and started Eric on a epinephrine and lidocaine swallow. The epinephrine is to help stop the bleeding in the esophagus. The lidocaine is the way to carry the ephinephrine. Eric is supposed to try and swallow it over 30 minutes as slow as he can and repeat every 2 hours. 

Eric is such a strong guy! I can't even begin to explain the number of things he's experiencing to make him uncomfortable. And yet, he doesn't complain but keeps pushing onward. Among the discomforts is the fluid weight gain from all the blood,platelets, and stool replacement fluid he's had to get to keep him in safe ranges. He has 8 kgs of water weight on him since he returned to the hospital (after his brief 36 hour break at home). Pray that the fluid can come off as quickly as possible and that his lungs can endure this extra burden. 

Keep up the hard fight, Eric! You can do this, and we are here to help you along the way. I love you!

Jamie

Day 54: T+54

It wasn't the best night for Eric. Or the best day. 

Two times during the night he threw up blood (11pm and 5am). Good news is that it was darker blood and not the bright red blood we had seen earlier. He was given red blood cells to help make sure his counts stayed high enough, which they did.

When I came this morning there was another throwing up of blood. He got some more anti nausea medicine and then he is napping this morning:

The afternoon was more of the same. No throwing up blood, but still has blood in his stool. He continues to receive red blood cells to help keep his numbers up. 

The GI doctor came in and said we are going to continue to watch his Hermatocrit every six hours and give blood accordingly. If it's still happening tomorrow at the same rate, he has a few different ideas of what to do next. 

Another lousy day. But Eric's hanging in there and doing the best he can. Although he's in so much discomfort, he never complains. Continued prayers in his behalf, to stop the bleeding, are much appreciated. We will figure this out, Eric. Keep up the hard work! I love you, a lot. 

Eric trying to sooth his dry mouth from being days NPO (nothing to eat or drink) a really quite miserable thing, if you've never been lucky enough to get to do it. We got the idea to swish ice water around and spit it out. A little relief, but not the same as ice cold water down your throat. So everyone, enjoy some ice water today in honor of Eric!

Jamie

Day 53: T+53

It was a rough St. Patty's day. 

Eric had an endoscopy today. He got escorted down:

He got all ready, took a selfie:

and away he went:

He was gone a long time and the wait was a long one. He came back sleepy:

The doctor came out and explained how the procedure went. They were able to dialate his esophagus and get the scope down enough to check everything out. They found a little inflammation and took eight biopsies to check for GVHD. The results from that will come back in a day or two. Overall things went as best as we could've hoped for. An EGD wasn't possible this time because the opening wasn't big enough. But he doctor said maybe in the future. 

Eric continued to recover well. Then he started to throw up blood! It took me by a big surprise and was really, really scary!! The nurses all came in and we got a throw up bag and sat his head up. Soon he stopped throwing up blood and we were able to clean him up. 

The nurses went and talked to the doctor about what was the next step. They drew some labs to check his hematocrit level, started some platelets, gave him some anti nausea medication and watched him down in endoscopy until the hematocrit levels came back. 

Good news is he hasn't thrown up anymore blood. The hematocrit levels came back higher than this morning (but he had also revieved a bag of red blood this morning). From my understanding if there was active bleeding his hematocrit would've dropped significantly. They will be checking his hematocrit levels every six hours, through the night, to be safe. 

Pray for Eric. He's one tough guy. This is another bump along the road but I think he will heal. Keep up the fight!! 

Jamie 

Day 52: T+52

Sunday is a special day, it's the day you get to see your family!

It was so fun to have the Utah part if Eric's family here yesterday! 

Still patiently waiting....

Jamie

Day 51: T+51

It's the weekend and we are in the hospital. Things slow down a little on the weekends. If you have to be in the hospital at least it's a little less chaotic on the weekend. 

Eric's Saturday was filled with much of the same but he got a visit from the donor, Jordan, himself. I took some time to regroup, (to get a pedicure and shopping) and let the boys hang out. 

Other than that, not much more to report than that we are waiting, sometimes patiently, for Monday and a possible endoscopy. 

Jamie 

Day 50: T+50

Eric the mummy sleeper. :)

It was another day in the hospital. The biopsy results came back negative for GVHD (yeah!!!). A stool sample was taken today that they are going to look for any possible causes of his nausea. If the stool sample comes back negative, then the GI doctor wants to try another endoscopy and see if he can get down. He would have the pulminologist there to watch Eric while they sedate him more than last time. The GI doctor also has a few other ideas on how to get the scope to go down and make it possible to do an endoscopy. Please pray that the doctors may be guided throughout the endoscopy and that they may be safe and cautious in their actions. Also pray that Eric may feel calm and good about the decision to do an endoscopy, if that's what the doctors decide. 

The endoscopy won't be happening until Monday or Tuesday (depending on the doctors schedules) so we have another weekend hanging out in the hospital! 

Other than talking to the doctors and finding out the results we have been hanging around doing what we always do. We watched another John Candy movie, the great outdoors, did some walking and napped. 

Here's what you do on walks when you're here too long:

Here's to the best weekend we can have in the hospital! We all love you, Eric and are cheering you on!! 

Jamie 

Day 49: T+49

Colonoscopy day! We waited around all morning until 11:30 and then the fun began:

He got transported down, got all set up, signed the consent,

Took crazy selfies for the wifey. And away he went.  Then we were left behind:

Eric came back sleepy

But with a pretty good report. The GI doctor found a little inflammation on the left side of the colon but then it wasn't anywhere else. Biopsies were taken to check for GVHD (graft versus host disease). The results from that will be back in a day or two. Until then we hang out. 

Eric did a great job today! He's now earned the reward of sleeping off the groggy medicine:

Day 48: T+48

Today was a hang out day. Nothing major happened accept the GI doctor told us he was going to have a colonoscopy tomorrow. That means he's still NPO and all his medications are IV. 

We watched uncle buck and had some good laughs. Eric also got some naps in and dominated some walks. 

Here he is post shower:

And because I am a crazy picture taking wife:

Here's to a smooth colonoscopy tomorrow!

Jamie

Day 47: T+47

Early in the day Eric got platelets in preparation for his endoscopy (going down his throat to look at his upper GI tract) and ERCP (going further down). The doctors wanted to make sure the platelets were high enough (to 75) to be safe before the procedure. They were looking for a few things: 

1. GVHD (graft versus host disease)

 in his GI 

2. CMV (a virus)

3. To make a small cut at the end of his duct to help prevent future gallstones getting stuck. (A gallstone being stuck in his duct is what they think happened to give him pancreatitis.)

He got one bag of platelets, and was given another to go down with. Here he is being transported down:

And because we are those people who take pictures of these things:

Eric went back, and we went to the waiting room. Unfortunately, it wasn't a long wait because they weren't able to get the scope down past his esophageal stricture (we knew he had one before going in).  It was a hard and frustrating day after that. It's hard when you reach a wall. There has been talk of doing a swallow study to see what his throat and muscles looks like and are doing. 

So for today we wait again. This is sure a waiting and patience game.  

Eric, you are a trooper! Way to stick in there through all of this hard stuff. I'll continue to be there with you through it! Still love you!

Jamie

Day 46: T+46

Eric was told to be NPO (no food or drink) after midnight in anticipation of an endoscopy, ERCP and or a colonoscopy today. They switched all his medication over to IV and NPO he went. 

Turns out that those three tests will turn out to be tomorrow. To pass the time we busted into the movie closet of East 8. We watched Patch Adams for the cloudy afternoon. 

I made another movie to capture an important part of my day everyday. Enjoy! (And I apologize for the shakiness that may be obnoxious, I'm an amateur movie maker). 

http://youtu.be/TNjBosRiR4c

Love you, Eric! You are my favorite for life!

Jamie

Day 45: T+45

It is IVIG day here at the hospital. It usually means a sleep all day kind of day. But today he took a nap and then was up for the rest of the day. 

Eric got out on two long walks with me. He is walking stronger and longer. Slowly but surely is how this progress will go. He's proving to be so patient in this process, because if there's one thing you need, it's patience. The nurses have said the phrase "two steps forward and one back." Nothing could be more true. You have a few good days and are plowing ahead, and then you'll have a hard day where you question if you're improving. One things for sure, Eric, you are definitely getting better!! You are making the little steps that will add up to the miles you have to walk to get healthy. 

It's all going to be worth it! All of it will be worth it!

For the first time since I've been here Eric watched a movie. We rigged up an amazing set up so he could relax, eat his orange jello and watch a movie.

You can call me Macgyver. 

Jamie