Gavin's Story published

One of the writers at the American Liver Foundation heard about Gavin's story and wrote an article about him. It's on the front page of their website:

http://www.liverfoundation.org/

Gifts from Gavin- new journey, new blog

I decided to start a new blog. I have been thinking about it a lot, trying to decide if I would, or if I would just continue to post here, or if I would make it public or private...finally I decided that there have been so many people that have shared in Gavin's story, followed him during all of his ups and downs, read all of our feelings and emotions and how we were dealing with it, gave us so much love and support...that I will go ahead and write about how our lives are now and how we are dealing with this. If anything I think it will help me to have an outlet, but perhaps maybe it can help others going through this to not feel as alone, and maybe help those who haven't gone through this to better understand "those that mourn".

Also, I hope that eventually I will be able to continue creating awareness about liver diease, Alpha-1 and organ donation. I feel like there is so much more I can do, that I *want* to do...I don't want anyone else to ever lose a child to this. It is like losing Gavin all over again. So hopefully within the next year I will have something planned. I know we will at least always do something on Gavin's birthday each year (Oct 6th), most likely have a toy drive for the hospital...but I also have other ideas I am thinking about.

The new blog is called "Gifts From Gavin"... http://giftsfromgavin.blogspot.com/

Gavin's Funeral Service

{you may scroll down to see more pictures from the funeral service; remember to turn off the music in the sidebar before listening to the links}

Opening remarks by Bishop Free


Opening Hymn "Teach Me to Walk in the Light"


Invocation by Gavin's great-grandfather "Papa"


Bishop Free outlining program


Musical number "Jesus Savior Pilot Me" by Bethany's cousin James


Life Sketch by Gavin's "Grandma Ann"


Piano Medley "Primary Children's Songs" by Gavin's great-uncle Doug


Talk by Pres. Robinson, family friend


Special Musical Number "Mary's Lullaby" by Crystal, family friend


Closing remarks by Bishop Free


Closing Hymn "I Lived In Heaven"


Benediction by Gavin's great-uncle Robert

Bethany's cousin James

Bishop Free

Gavin's "Grandma Ann"

Pres. Robinson

Gavin's great-uncle Robert

Thank you to all our dear family and friends who helped us honor and celebrate Gavin's sweet life. The service was beautiful...the programs, the music, the pictures, the flowers, the guestbook, the video. Everything was perfect. It meant so much to us to have you all there, and we missed all those who were unable to attend.

Obituaries

Obituaries were printed in both the AZ Republic and the East Valley Tribune on 9/26.

Online Guestbook

It is our deepest sorrow to inform you that Gavin Charles Sprague passed away Monday evening. Information on his viewing and funeral arrangements will follow.

Thank you to all those who loved our special little boy so much.


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*Gavin's funeral will be held this Saturday, September 27th at the LDS Mesa Central Stake Center at 925 N. Harris Dr. Mesa, AZ 85203. Visitation will start at 10:00am and the funeral will begin at 11:30am. Graveside dedication will follow at the Mesa Cemetary at 1212 N. Center St. Mesa, AZ 85201.

We would love to see everyone there who has been touched by our sweet little boy's life.

Flowers can be sent to the Bunker Garden Chapel Funeral Home at 33 N Centennial Way, Mesa, AZ 85201 prior to Saturday. Flowers sent to arrive on Saturday should be sent to the LDS Stake Center.

Fast tonight

If you are able, we are asking our friends and family to fast and pray for Gavin starting tonight.

They re-did his catheter but so far there hasn't been any urine. He just got a big dose of the diruetic and they are hoping that will do something positive. If it doesn't, they are going to put him on dialysis tomorrow morning. Tonight is going to be a very long night. We could really use some peace and comfort during this time.

Its going to be tricky to put him on dialysis b/c he is still on the oscillator. Today while they took his lung culture (which they have to turn off the oscillator to do) he didn't drop any of his numbers...so the doctor is hoping that they will be able to switch him to the ventilator or hand pump it for at least a couple of hours so they can do the surgery. They won't be able to take him into the OR b/c of his condition, so they will try to do it in his room.

His white blood cell count keeps rising, leading them to believe that he either got another bacterial infection, possibly from his abdominal drain, or the fungus has spread. The infectious disease doctor said there aren't really any other options for the fungus, but they will add another antibiotic, Vancomiacin, in case it is a new bacterial infection. Nothing has grown out of any of the cultures though.

His blood pressure kept dropping into the 50's and they had to turn up the dopamine to 18 and turn up the epinephrine. They also gave him some calcium b/c that was low, probably b/c he didn't get his TPN last night since he wasn't urinating. It is stable again now and we pray it will stay that way.

We do have some positive things to be thankful for. At least this time his oxygenation has been stable, he hasn't needed to go much higher on the oscillator, and he is not so bogged down with fluid as before. These are little bits of hope we have to cling to, and we pray that they will make the difference while he fights through the next 24 hours.

We pray that the diruetic will help him tonight. We pray that he won't need the dialysis, but if he does, that he will get through the surgery. We pray that this new infection will be identified soon and that they will be able to treat it successfully. We pray that Gavin is given the neccesary time to fight this battle and stay here with his family who loves him so very much.

please pray

His blood pressure keeps dropping, its only in the 80's right now. His chest x-ray looked worse today. They don't know whats wrong. They think the infection may have spread through his body. They turned the oscillator back up to 22. Please please pray for him. He's come so far...we can't lose him now. I don't know what else they can do. We're just sitting here waiting and praying. I don't understand why this is happening. Please let this only be a setback...please let him get better. Its going to be days now before he can get off the oscillator...his kidney numbers have to improve, there's nothing else to do.

Monday morning- kidneys getting worse

Gavin has taken a turn for the worst...within the last 24 hours he has stopped urinating completely and his kidney function numbers have risen from 0.7 to 1.1 (they have been saying all week that when it gets to 1 its really bad). His blood pressure dropped again last night and they had to turn the dopamine back up to 12 and the oscillator back up to 21. He drained a lot of bloody fluid from his lungs, so they think that was making it harder for him to breathe.

There have been blood clots in his urine so they don't know if he has an infection that spread to his liver/kidney/bladder or if there are clots in his bladder. They just don't know. They took out his catheter and are doing an ultrasound on his abdomen right now. Then they will try putting a new kind of catheter in.

I don't understand why this is happening. He has come this far only to get even worse. Why???? We are terrified. After he had so many good days I didn't expect him to crash like this so suddenly. Everyone was so optimistic. I don't want this to happen. He was supposed to wake up tonight. My heart is breaking again.

Please pray that this infection hasn't spread to other organs and that it will turn out to be something easily fixed. Please bless his kidneys. Please bless he will start urinating again. Please bless he can get off the oscillator. If they have to end up doing dialysis on him, he has to be off of it completely, or there are no other options.

Sunday night

They turned down the oscillator to 20 tonight! So far, so good. Heart rate is in the 130's, blood pressure is staying steady in the 100's, and his oxygenation is still at 100%. Tomorrow morning(if all goes well) will be 19...tomorrow night switch to the vent!

He had a pretty stable day, and only a couple hiccups...this morning his blood pressure dropped for a minute so they turned up the dopamine again (they had just tried to turn it down). His doc said that was fine though...if he has to be on the dopamine until he's off the oscillator and the vent, its okay. She also said that the oscillator can make your blood pressure lower, so that maybe he's just ready to switch. 

Then later this evening his oxygenation fell below 94% for about a minute, but it went back up so it wasn't a concern. Still those things scared the heck out of me, I am so paranoid today. I do not like hearing that alarm!!! His fever went down this afternoon, so hopefully that will stay away for awhile.

Church was really nice today...the building is really neat, its an old one from the 50's with a balcony and a courtyard in the middle. I love those ones! We only stayed for sacrament, but next week, depending on how Gavin is doing, we will stay for all the classes. I am excited...its been awhile since we've been able to go to church together! The compassionate care person is already getting info for me for the playgroups and mini meets. 

We are still praying nonstop that his body will tolerate getting off this thing. They will be able to turn off the paralyzing meds when they switch him to the vent, so he will have periods of awake and awareness. I am so excited!

Sunday morning

During the early morning they turned the oscillator down to 21! He is handling it really well. So tonight will be 20, and tomorrow morning they'll try 19, if he tolerates that, they'll switch him to the ventilator sometime tomorrow. I can't even express the joy and thankfulness I felt when Andre called and told me (I slept at the hotel, he stayed at the hospital last night). I was just in tears and very quickly on my knees to thank my Heavenly Father. I don't think I've stopped saying "thank you" in my mind all day.

They turned his last blood pressure med down to 8 from 10, and lowered his diruretic again (the nurse said she actually had to call and double check the dosage b/c it was so low she thought it was a mistake!). His kidney numbers went down another point, so that is a very good sign. His oxygenation is still 100% with only a teeny bit of help from the oscillator. His blood pressure is in the 90s/100s, and his heart rate has been in the 140s.

He did spike another small fever this morning, to 100, so they are putting ice packs on him and keeping an eye on it. But again, they said its normal while he is fighting off this infection. One side of his chest looked higher than the other, too, but they did a chest x-ray and multiple doctors have looked at it and they don't think its anything to worry about. It makes me nervous, but they said it would be messing with his ability to oxygenate if it was fluid build-up or something.

The ward members here in LA are taking us to church for sacrament today, and then to the temple afterwards (we're not doing a session, just walking around). It will be nice to be able to show our gratitude in God's house though.

I am still super nervous about any setbacks that may happen. But things have been so good the last couple of days. We are so grateful that drain in his abdomen has seemed to help everything. We all feel that Andre was inspired to mention it to the doctors that morning.

I just can't wait to see him awake. I get in tears just thinking about it. I just want to hold him and hug him and see him looking at me. I am so thankful to all the doctors and nurses and medical staff here at UCLA. I don't think he could be anywhere better. And thank you, thank you, thank you to all our friends and family that have been so diligently praying for Gavin this whole week. I can't express it enough.

He still has a lot of road ahead of him, so he still needs all the prayers he can get. But today is a very good day. If he can just get through the rest of the weekend and onto the vent, he'll be in a much better position. We have been reading all the comments on the blog to Gavin, so comment away! We love to read them. :D

Saturday afternoon

Gavin had another stable night. They moved the oscillator down to 24. And they've turned down some of his meds, his blood gas is good, his blood pressure has been stable, and he is about half the size he was yesterday- he looks so much better! His kindey function numbers went down by one point.

He did develop a fever during the night, and it has been up and down all day today, but the infectious disease doctor is not too concerned about it. He said its totally normal for him to spike fevers during the first couple of weeks while he is fighting this infection. With ice packs they have been able to keep his temp under 100 so that is good.

His heart rate has been a bit high today around the 140's, so they have been adjusting his pain medication and his paralyzing meds. He has been really sensitive to the paralyzing drugs, so they have to keep moving it up and down...one hour he will be "too out of it" and the next he'll be twitching his toes and fingers and moving his chest. That is not good b/c then he fights against the oscillator which wears him out.

They are hoping to have him weaned off the oscillator by Monday. Please pray that his body can handle it! They will try turning him down to 23 this evening, and down to 21 tomorrow. We just pray pray pray that he will tolerate it this time.

I bought some books from the gift shop to read to him, the Golden Book Classics like the Pokey Puppy and The Little Red Caboose. We are trying to encourage him and talk to him a lot.

He is still "deeply, deeply in the woods" according to his doctors, but he is making baby steps in the right direction today. Today is the first day he has had a positive move forward, so hopefully it will stick. Two nights ago they were bringing up end of life options. So this is a small tip toe away from that. Thankfully that drain seems to have put that off for at least another day.

So today we have a lot to be thankful for. It doesn't mean that he can't back track or that tomorrow he couldn't crash again. Its really scary to think of that. We are all still holding our breath that the fungus hasn't spread anywhere else to his body, and that he can remain stable throughout the weekend. We are praying to thank our Heavenly Father for more time, and for the generous blessings we have received. We pray that Gavin can continue to move forward and his body will be able to heal and fight this infection. He still has a very long way to go.

Friday Night

Gavin has had a good day. Everything has remained stable. Most of his numbers are looking better than yesterday. His urine output doubled after the drain was put in! That is so so so great. They will start weaning off the diruetic, which will also give his kidneys a break. Hopefully his urine output will remain the same, even without the extra drugs. That would be such a great step in the right direction. We are praying specifically that his kidney numbers look better in the morning, it is crucial for them to go back down at this point.

They are just letting him rest tonight, and not trying to wean him off the oscillator just yet. Hopefully it will be a quiet evening. We are praying that his little body will be able to heal and rest tonight, and tomorrow he will be ready to fight again. We hope and pray that tomorrow we will see more improvement as his lungs heal and are able to breathe more freely. We pray that this fungus hasn't spread to anywhere else in his body.

Two elders from the ward here in LA came to see us today and help give Gavin a blessing. They were so kind, and are arranging some meals for us this next week. I am so humbled by the willingness of their ward members to help a family they don't even know. We are hoping that maybe we can attend a meeting soon.

He is not out of the woods yet. He can, and probably will, still have some setbacks and bad days. But today he was stable. And right now that is the best blessing we can hope for. One step at a time...hour by hour, day by day.

It is a little scary, letting this hope creep back in after yesterday looked so grim. We are trying to hold onto it though, no matter what happens in the days to come. He can do this. He has made it this far. We have been in continual prayer of thanks to Heavenly Father for these blessings today. We are thankful for hope. We are thankful for the outpouring of love for our precious Gavin. We are thankful for one more day.

Friday

Gavin remained stable the rest of the night and this morning. They needed to turn up his oscillator and start some different meds to help with his blood pressure and heart rate, but he responded to them appropriately and quickly, so that is is okay, even if its not the best scenario. The only problem with this is that the more meds = the more damage to his liver and kidneys.

He did start urinating some more though, so was great news. His kidney function didn't worsen either. We are soooooooo grateful. Right now that is the main concern. His kidneys can not fail. His blood gas oxygen levels were better as well.

They actually had a fungus grow from his lung cultures, and it was a different one than they were thinking, although they present very much the same and do pretty much the same thing. The anti-fungals he has been on are good for both though, so at least we haven't lost any time. His chest x-rays are still about the same, but they said those usually lag behind the patient's real condition, and they aren't as important.

They are putting in a drain into his abdomen right now to help relieve some of that fluid. There are risks, but right now the benefits outweigh them. Hopefully this will take some of the pressure off his lungs, helping him to breathe, and the strain on his kidneys. They are going to be testing the fluid to make sure the fungus didn't spread. Please please pray that it hasn't spread past his lungs.

We have faith that Gavin can make it through this. He is such a fighter. He just needs more time to fight this infection and let his lungs heal. If he can only do that then he will be okay. This weekend is going to be a big deal. He is pretty much hour to hour right now. We are so grateful for all the prayers in Gavin's behalf. We are so thankful to our Father in Heaven that Gavin has made it this far. Please please continue to pray to our Heavenly Father in his behalf. Thank you all so much.

Please pray

Gavin is having a really rough day. His kidneys are in bad shape. His blood pressure keeps dropping. He isn't urinating very well. And his bleeding is bad. Tonight is crucial. Please pray for him. He needs more time for his lungs to heal. All he needs is more time. Andre's mission president came and gave Gavin a beautiful blessing. We are all trying to have faith he will fight through this night. Please please please pray for him. He has to make it. He has to make it through this night. Please don't give up on him.

Two steps back...

Gavin made some good progress yesterday, he was down to a 23 on the oscillator, and off both drugs that were keeping his heart rate and blood pressure stable. But by tonight they had to switch the oscillator back up to a 28, where it was Monday evening when I first got here, and had to restart the med for his blood pressure again. He also had more blood in the samples from his lungs again. If this fungus did start in his lungs like they think, that means its been there for over a month and has done a lot of damage.

Its so disheartening. I am so worried about him. I just wish I could fast forward through the rest of the week and see him off these vents and awake. Its so hard just sitting here waiting, and then having his progress undone. Its like the last two days didn't count. Fungal infections are so hard to treat, and on top of everything else...it just feels like drowning.

There has still been nothing growing out of his cultures. They did an ultrasound of his head just to make sure he was not bleeding in his brain. They had no reason to think he was, but they wanted to check just in case since is he having bleeding in other places and its easy to do an ultrasound without bothering him anyway. He hasn't needed blood products at all today though, so that was good.

They changed his sheets today, put in new tubing on all his stuff and washed his hair, so that was nice. I have been playing music for him today to help relax him...like Enya, nature-y stuff.

Thank you to all those who fasted and prayed for Gavin today, we really appreciated it.

Gavin in PICU- asking for fasting & prayers

Gavin was moved to the PICU late Sunday night. He was having trouble breathing and coughing up blood. Since then its been a nightmare. He crashed so suddenly, its so scary...right now he is completely sedated and paralyzed and hooked up to a bazillion machines. I feel like its a house of cards right now, at any moment everything could just fall.

They had to switch him from a normal ventilator to an ocsillator yesterday, which is pretty much a "last resort" option. His body just couldn't keep his oxygen levels up on his own. They had to increase the rate from 25 to 28 during the night (they want it at 20 or lower before they can switch him back to the normal vent). He is bleeding in his lungs, his urine, and his stools. The ct scans are showing something in his lungs, but they don't know what yet (fluid, blood, or fungus) we have to wait for the cultures to come back. He also has fluid build-up in his abdomen. He is on so many meds I can't even explain them.

He had a rough night last night...his heart rate and blood pressure kept dropping. He starting running a fever early this morning, but it went down a bit with ice packs, and went under 100 later today. They've taken cultures from his lungs, throat, nose, stools, and urine but nothing has grown out of them yet.

They think he may have breathed in a certain fungus called Zygomycosis that eats away at the blood vessels, which would explain the bleeding in his lungs. It would have started in the lungs, and spread to his skin where that big scabby thing was through the bloodstream. Its a really rare one, of course. The ID doc here consulted one of the top pediatric fungal specialist in the US to get a second opinion on it, and they both seem to agree that, thats what it probably is. But they won't know anything for sure until the lung culture grows something. They are also going to keep an eye on the incision where the scab was to make sure they got it all out and it doesnt become re-infected.

His docs say he is doing better this morning than he was yesterday morning though. His chest scans from last night were improved from yesterday morning. They looked about the same today, but at least not worst. The bleeding in his lungs has lessened. But the bleeding in his urine has been increasing (but they are not as concerned with that right now). For now they are concentrating on figuring out what is in his lungs, what caused him to crash, and trying to lessen the amount of liquid in him. He is on two diuretics for the liquid, but they don't want to try and put a needle in to drain any more of it since he having problems with bleeding.

He is on two "super" antifungal antibiotics that are broad spectrum, meaning they cover a lot of different kinds of it. Usually it takes about 48 hours on them before they really start kicking in. So hopefully he will improve more by tomorrow morning. His doctors are sayin that right now he is stable, and they are seeing positive improvements. Its just going to be a "tight rope walk" the next few days as they try to adjust things...lowering the oscillator, while adjusting the meds, etc, since everything interacts and affects something else. Its going to be baby steps, but the doc is hopeful that he will be off the oscillator in 2-3 days. I'm guessing he won't be back on the transplant list for a couple of weeks at least, they have to figure out what this is first and clear it completely from his system first.

This is just all so terrifying. Last night I was so overwhelmed by fear I would forget to even breathe. The doctors and nurses were either in his room or sitting right outside the door all night. This is so much worse than the feeling of despair when the offers fell through.

We are asking our friends and family to join with us in a fast for him, starting tonight and ending tomorrow. Anyone who wants to join in is welcome...please send your prayers and/or positive, healing thoughts to him!

Gavin & surgery

After the 3rd dry run I was ready to finally go home, and I flew home the next day. It was sooooooooooooooooooo nice to sleep in my own bed, and to get to see my kiddos. I got to take them to our church overnight "camp out" (its was actually cabins) and it was SOOOOOO great, the kids had a blast!!!! It was my small triumph over this CRAPPY liver disease. HA! A NORMAL WEEKEND WITH MY KIDS!!! :D

The docs were planning on transferring Gavin to the hospital near our house on Monday (tomorrow) but then they ended up diagnosing that weird thing on his stomach as a fungal thing, but couldn't ID it any further. Either way they wanted it OUT, so Gavin had surgery yesterday and they cut it all out. 6 inch incision that will be where his transplant incision is, so at least it will only be one scar. They were just going to cut the circle out and leave it OPEN to heal, but thankfully they decided to do it this way instead. The ID doc is sending a picture and some samples to some "friends" around the country to see if they can ID it. Here it is (sorry, its gross!):




They are doing a cat-scan today to make sure it hasn't spread anywhere else in his body. So poor Andre has been dealing with NPO for two straight days!!!!! Gavin will be off the list for the rest of the week while they give him antibiotics for it. I'm actually okay with that. I need a break. We all do actually. Gavin is not coming home (either to home or the hospital here) anytime soon. Andre is staying in LA until Monday, and then his mom and sister are flying out there to give us a break. They will stay there for a few days so we can all be home together and have a "normal" week. I will fly back Thursday/Friday I think.

I'm starting to adjust my expectations and trying to figure out a workable schedule for us to fly back and forth out there, and still get to see the older kids, etc. Thankfully we have a handful of family members who are willing and able to take some rounds out there with him. Hopefully it won't last long...I didn't plan for this expenses-wise!!! So anyway, that's where we're at now.

3rd time was not a charm

We got another offer this evening while we were here. Everyone was hopeful, his whole team came in to talk to us. We just heard it was a no go. Too big. Again. This time was much harder than last time. Its harder to numb out the feelings. And we're HERE this time...and we're not going to be able to just come home tomorrow. Doc says we'll probably be here into next week.

How is this ever going to work? He is just so small. But what does that leave me to hope for? For a smaller child to die? Its just horrible. Its a horrible position to be in. I wish it didn't work this way.

Losing hope...trying hard not to, but inside I am. Maybe that's not the best way to describe it. I'm sure I'll feel better in the morning, but tonight is going to be hard.

Tuesday update

Well, we didn't go home on Monday. It looks like we may be here until this weekend, possibly the beginning of NEXT week as well. I am thinking of flying home Thursday though, so I can see the kids and get some other things in order just in case Gavin gets another offer this weekend. Its been really hard for me though...everytime I look at flight schedules and think of packing my bag and calling a taxi I start crying. I just don't want to be so far away from Gavin. I am just really hoping that on Thursday they can give us a more definite idea of when Gavin will be able to leave.

Things that have been keeping us from going home are:

- Gavin has needed blood transfusions every other day this week, in comparison to once a week before. That is not so good news. His doctor said he may need to be in the hospital until transplant because of it, but that we can at least transfer him back home to the hospital in AZ eventually. That is really not good news. It has been kind of rough these last few days for me, because everything is starting to feel "real" again, and I can feel him slipping into this scary place where I do NOT want to go!!!!

- Gavin did end up catching Andre's cold, which put him off the list for a couple of days until the lab results showed that it wasn't a viral infection (that was just tonight). So starting tomorrow, he is back on the list! He was all congested and snotty the last couple of days, but is starting to look (and sound) better today, and his appetite has increased a lot! Thankfully he is off contact precautions (again...the C-diff turned out negative, too) so tomorrow he can FINALLY go in the playroom!!! :D So that's good news!

- Gavin has a strange scabby, hard purpley-red thing on his stomach that started a few weeks ago as a skin irritation/breakdown from tape. Somehow it has turned into this ugly, angry looking thing. The Infectious Disease team and the Dermatologists have been streaming in and out today to look at it, and they will biopsy it tomorrow to see if anything grows, like a bacterial infection or a fungal thing. That will take 1-3 days, so I'm really hoping we get the results soon, because that is pretty much the only thing left keeping us here. Another idea is that it could be Alpha-1 induced Panniculitis. That would extremely rare and very strange, and none of the doctors have ever seen that before in person. Once again Gavin has to prove beyond all doubt that he is a very special little guy! :P

So that's where we're at. Today two different teams of 2nd year students came in to see Gavin and hear his history. Andre and I got to tell them all about what happened, how he was diagnosed, etc, then they asked us questions, and got to examine Gavin. It was very interesting and fun! I was really happy that at least there are now 20 doctors out there who will never misdiagnose Alpha-1 or wait to give their newborn patients a blood test for jaundice!!!

Last night Andre and I managed to slip away for a couple of hours after Gavin went to sleep and we walked down to Westwood Village to get something to eat. It was really nice and relaxing. We really do love Los Angeles...it's a beautiful city and the weather is so nice and you can just faintly smell the ocean. And no matter what time of the day or night, there are always people walking around. It's so nice to have everything so close by. We probably won't even need our car here during the transplant.

Starting tonight we're both sleeping in the hospital room b/c we didn't want to keep paying for a hotel room. That should be interesting! :P

Monday...

They have decided to keep us here until Monday, partly b/c I think his doctor is doing rounds then, so we won't have to fly back out here in 2 weeks for his scheduled check-up. And I think they are also hoping they'll get another offer while he is here.

Gavin was finally moved from the PICU to the peds floor late last night, I am so glad! He was not sick enough to be in the PICU, all the cords (blood pressure cuff, heart monitor, pulse, etc) were driving us both crazy b/c they will not stay on when he is crawling, climbing, wanting to be walked around, etc.

His new room on the peds floor is sooooooooooo nice! We haven't been admitted in the new hospital yet, and we are impressed!

They are testing him for C-diff again, so right now he is on contact precautions (which means he can't leave his room or go to the playroom) so that stinks. Hopefully they get the results back soon so we can go play!

Andre is sick...runny nose, sneezing, sore throat...just what we need right now! He has to wear a face mask while he is in Gavin's room, and we are trying to just keep him away, period. Gavin's transplant coordinator said they won't transplant him if he is showing signs of being sick (runny nose, cough, fever) so I am freaking out a little bit. (a LOT) She also said that Gavin attracted that last offer, meaning that he was first in line to get it (not called in as a back-up), but I guess it went to the back-up instead. She said he is the highest O blood type on the list right now, so it is imperitive that he does not get sick!!!!