Thursday, July 25, 2013

Christmas in July!

Jacob had another great day today. He walked all the way from his room to the playroom which is quite a distance. He started to cry and reach for me about half way there but we got him to keep going. We were pulling the wagon in front of us and kept telling him he could have a wagon ride once we got there. When we got to the playroom we asked if he wanted to play but he climbed in the wagon. He wasn't letting us keep it away any longer lol. His Physical Therapist laughed and said well I guess he is ready for stairs. He is seriously doing awesome with walking. This was only his second time trying and he was almost running.


We did a lot of wagon rides today. He would stay in that wagon all day if he could. He loves cruising the halls and the staff loves seeing him go by. They tell us how great he looks which is always nice to hear.

A fellow heart mom and good friend of mine, Michelle Roth sent Jacob a care package this week. Her son is the other Jacob from Team Jacob. He picked out a few items that he wanted to give to Jacob to cheer him up. In the box was a baseball. They had the great idea to have his care team all sign the ball since we wouldn't be back for a long time (God willing). I thought that was such a unique idea. So while roaming the halls we were getting autographs from all of the nurses and doctors we have grown to love. The doctors really got a kick out of it. They said they had never been asked for an autograph before lol.


I didn't think I would be able to get Dr. Sprays autograph. He is Jacob's surgeon and he is of course super busy. You don't see him much and when you do he is checking on a baby who just came out of surgery or going to talk to the family about how a surgery just went. Today I noticed he was coming down the hallway so I ran and grabbed Jake's ball. I yelled his name and I think I freaked him out lol. I am pretty sure he was just out of surgery and on the way to talk to a family but you know this is important stuff. When I asked him for his autograph he looked a little surprised but smiled and said of course. So now the baseball is complete! Such a great keepsake for Jake. Thank you Roth family!


We also stopped by the playroom a few times today. Jake loved looking at their books and having me read to him. Getting him out of his wagon and all of his tubes and wires situated is a pretty hard task. By the time we get him out he stays maybe 5 minutes and we have to do it all again. But if it makes him happy it is worth it! I am building some serious muscles lifting him like a baby again, great workout lol.

 
Today in the playroom they had a big buffet of food set up in honor of Camp Get-A-Well-A. I could only get Jake to eat the french fries and popcorn lol but I ate and it was delicious! Camp Get-A-Well-A also had a carnival today and Aidan got to have his face painted and won a few prizes. This trip has been a lot harder on Aidan so it was so nice seeing him be able to have so much fun this week and get some attention too. We forget how hard it is on the siblings to be a part from their parents and also be stuck in a hospital room all day. The staff here at CHOP goes above and beyond. Their child life program has been amazing this stay. They stop by a few times a day to let Aidan know what events are going on and make sure both boys have whatever they want.


Nutrition wise Jake snacked all day. His diet is pretty much consisting of cheese puffs and apple juice. I did get some of a toddler meal in him today. He didn't want his juice very much which is not good. We really need him to drink to replace all of the fluid that is draining from his chest tube. He is also on three different diuretics now so we need to keep him hydrated to replace what he looses from those. He is on Diurill, Lasix and now Aldactone. He will most likely come home on those and then be weened off of the Diurill and Lasix. His cardiologist told me there is a study that shows Aldactone can actually help with the heart function and increase mortality so he may stay on that one for a while. He is still having a lot of air in his tummy and it is causing him to retch. Certain foods especially dairy or really heavy stuff makes him throw up so we have to go slow with feeding. His stomach tolerates the cheese puffs just fine though lol. The staff said he was actually low on sodium so the foods he has been eating will help that. Still working on getting him on a better diet but they are just happy he wants to eat at all.

Jacob's chest x-ray looked better this morning but his chest tube near his right lung is still draining quite a bit of fluid. The original chest tube that was placed during surgery is not draining much and will most likely come out in the morning. It has started coming out a little bit from him moving around so much so they just said he really doesn't need that one anymore. Now if only the other one would stop. I thought he was having a ton of drainage but his cardiologist said it is tapering off. She also told me some kids drain 1000 mls a day. Jake is only draining about 200 to 300 per day. So it is not horrible but he can't come home until it stops. We won't be able to come home this week but possibly early next week. There is not really a way to tell when until the fluid stops. That is all we are waiting on. Andy, my mom and Aidan are supposed to leave to come home on Saturday. I will just stay at the hospital with Jake and then when he is ready to come home Andy will have to drive back up to get us. We are still trying to figure all of that out but we can't really "Plan" since we don't know how long it will take. Please continue to pray the fluid stops!

We had a few visitors today. Jennifer Perez stopped by with her son Andrew who has HLHS. He and Aidan both got along really well. Jake was really tired and worn out from his walk so he just was entertained by watching those two.


Stacie Jackley also came by and was a huge help with Jake today. Her son Kellen has HLHS and she is a board member of Sisters by Heart as well. She pushed around Jake's IV pole and strolled the halls with us. She also surprised the boys with a fun gift bag. Thank you Stacie, we love you!


I had not left the hospital for two days so Andy decided to take the night shift tonight. Last night was rough and I didn't get much sleep. It was a perfect night to stay at the Ronald McDonald House because they were doing Christmas in July. I can't say enough how amazing this place is. We had a wonderful dinner followed by Santa giving out gifts to all of the kids.



Every present had a name on it so no child whether here or at the hospital was left out. Aidan got a parking garage/race track and Jacob got a little people race track which actually will connect and work with a track we have at home. It is perfect because he has been playing with a track they have in the playroom at the hospital. We sang Christmas Carols and a volunteer read the kids "How the Grinch stole Christmas".



As if that wasn't enough then they did a raffle. Each family got five tickets and could put them in any basket they wanted. Aidan put all five in a gift basket full of "Disney Cars" stuff. When it was time to call out the winner, HE WON! Usually he won't go anywhere without me, he is afraid but he was so excited he shouted "That's us" and he ran up to get everything. The stack of toys was over his head when he was trying to carry it all lol. He was glowing with excitement.



We really were here during a perfect time for him. They had Camp Get-A-Well-A going on at the hospital and Christmas in July at the Ronald Mconald House. Between all of that and the visitors we have had who brought the boys gifts, I don't know how we are going to fit it all in the car lol. Aidan is so happy and I know Jacob will be thrilled to get his presents tomorrow.

Please be sure to throw your change in the Ronald McDonald box at the McDonalds drive thrus and save your pop tabs to donate as well. They go above and beyond, not only giving families a place to stay but always hosting events to help make that stay easier. They are such a wonderful organization.

You can also make a donation to the Philadelphia Ronald McDonald House by clicking below:
CLICK HERE TO DONATE

So the plan for tomorrow is to take out one of his chest tubes, get him up and walking as much as possible and pray that the fluid stops! Thank you everyone for the continued thoughts, prayers and well wishes. We feel the love and support and it means so much to us. 

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Wednesday, July 24, 2013

We moved to STEP DOWN!!!!!

Today has been the best day! Jacob has made so much progress today I think my heart may explode!



I woke up at 8:30 to the surgical PA coming in to take out Jake's RA line. FINALLY that thing was coming out. I knew once it was out Jake would get up and things would start to get better but I had no idea he would do as amazing as he did. It was actually pretty interesting to see that they just pull out the line at the bedside. The RA line goes right into his heart. They just snipped some stitches that were holding it in and pulled it right out. They had given him some morphine so he would be calm but he barely flinched. When they took the line out his original chest tube bleed a little more than I liked, it worried me but luckily it quickly stopped. They said it is normal especially where it has been in so long.

We let Jake sleep off the morphine for about an hour or two and then it was time to get up! Occupational therapy came in first. They got him to sit on the edge of the bed then had him walk to a chair.

Ready to get out of bed.
I thought his legs would be super weak from being in bed all week but he did so well. He stood up by the chair for a while and then sat on my lap and played with puzzles and colored. Before today Jake would not do anything. What a difference getting out of bed makes!

When they were done, the physical therapist came by. She asked if we wanted to wait since Jake just worked with OT but he seemed like he wanted to keep going. She stood him back up and we walked around the bed to the other side.

Standing up for the first time in a week!
Walking for the first time.
Jake didn't fuss at all! I think he thought we were leaving because he started saying blankie, he wanted to make sure we didn't leave it lol. He walked around the bed and we put him back in it to rest

VIDEO OF JAKE WALKING

I thought he would pass out from all of his hard work but he stayed awake. Since he was still awake we decided to take a wagon ride around the unit. It must have been super exciting because half way through the ride he bent down and started to fall asleep lol. All of his hard work finally caught up to him.


A short while later we were told we were moving to the STEP DOWN UNIT! It is really just the other end of the hall but it is a huge step toward going home. The only thing still keeping us here is the fluid coming out of Jake's chest tubes.

We got all moved into our new room and Jake wanted to go on another wagon ride. This one lasted for well over an hour. Every time we got back to the room Jake would point to the hallway and say "More Ride!" A good friend of ours from home sent Jake a baseball to have his care team sign so he would have a keepsake from his surgeries. I thought that was such a great idea! So during our ride we visited some of our favorite doctors and nurses and got their autographs. They loved the idea too. Thank you Michelle, Pete and Jacob. Our ball is almost full of signatures already!
 

It is really good for his chest tube drainage to keep him sitting up so we kept on strolling around the unit for a while and then we decided to bring Jake to the playroom. He had fun playing with a racetrack they had. Aidan was mad he couldn't go but this playroom is only for patients. I told Aidan that he had a lot of toys in Jake's room. He replied with "It is not fair, being a big brother is really hard work. I work just as hard as the doctors and I should get to play" lol. Seriously this kid is a handful. He eventually understood. This stay has been hard on him. He is 6 and is bored, can't blame him.



It is no small task getting Jake out to play. It is not easy maneuvering around those chest tubes! He has the one tube which is just a small tube with a bulb at the end. That isn't so bad. The other one that they put in for the right lung is the complicated one. It has a huge box at the end of it which keeps track of the drainage. We can't lift Jake under his arms for 6 weeks because his chest bone is healing. So we have to scoop him up under his butt kind of like a baby. So I scooped him up while Andy made sure the chest tubes were not getting caught and carried the huge box. I stood him up and he walked over to the toy. He played for about 20 minutes and then we decided it was time for a break so we went back to our room.

All of the energy he was exerting must have made his appetite come back because he was eating all day long. He went from saying no to everything and anything I would show him to wanting everything. He ate almost as well today as he does at home. It was truly amazing. Really the only thing keeping us here now is his chest tube drainage. The original tube has slowed down a ton. It is barely putting anything out tonight. I wouldn't be surprised if that comes out soon. The other tube however is still putting out a lot of fluid. Getting him up and moving will help get all of the fluid out but please pray it slows down soon so we can go home! There is really no way of telling when it will stop. Some kids only drain a few days and others can drain for weeks to a month. Only time will tell. Jake also did not need any pain medication all day. I think he got maybe two doses of tylenol today, no morphine during the day. We did give him a dose of morphine tonight around 10pm because he was saying Owie but that is not surprising since he was up and moving so much today. Still huge progress that he didn't need it all day.

We had a bunch of visitors today. Aretta Straw a fellow heart mom, dropped of some gifts for the boys. We didn't get to meet them because Jake was having his PT and I couldn't leave but the boys love their gifts. Thank you Aretta! Christa and her two little girls also stopped by. I think I mentioned on here before that her daughter Gabby was having her Fontan when we were here for Jacob's first open heart surgery. Jake was still tired so we went and hung out for a bit on the bridge (hallway that parents hang out in and visit with friends and family). Daddy stayed with Jake while he took a nap.


A little later in the day we had a very special visitor. A 21 year old HLHS survivor named Chelsea Schnell and her mom stopped by to see Jake. Of course he was asleep the whole time but it was so awesome for me to be able to talk to her and see how great she is doing.

Chelsea with Jake.
 I asked a million questions and she was nice enough to answer them all! She lives in Philadelphia and goes to college here. Dr. Norwood did her surgeries here at CHOP 21 years ago. She doesn't remember any of her surgery stays which is the great thing about them being so young. Hopefully Jake wont remember any of this either. She is living a very normal life and you would never guess she had HLHS. I can't tell you how amazing it is to see how good she is doing and know that one day that could be Jacob, just living life and thriving.




You can click here to visit Chelsea's blog. 

A few of her YouTube Videos:
https://www.youtube.com/watch?v=dOSYK0iQ7y0
http://www.youtube.com/watch?v=5togkirH0AU


RECAP of today:
  • Jake has been eating a ton and barely retching. 
  • The RA line is finally out
  • Jake has walked, played and been up most of the day
  • Still draining quite a bit from the right chest tube, the other is slowing down
  • We moved to Step Down! 
We had an amazing day. Tomorrow PT is going to have Jake walk around the unit. Please continue to pray for Jacob, especially pray that his chest tubes start slowing down so we can get out of here. Other than the fluid Jake is ready to go. I am hoping we will be home by next week but of course we are on his schedule so it will take as long as it takes.

If you could also pray for a little girl here named Valentina. I have hung out with her parents quite a bit during this stay. They are a wonderful family. Valentina is 5 months old and just had her Glenn (Second open heart surgery). She has had some complications and has been having a rough few days. Please pray the doctors can get everything worked out so she can get better and go home soon.

I better get some sleep, I have a feeling tomorrow will be another active day.



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Monday, July 22, 2013

Progress...

Overall it was a much better day. Dr. Spray decided that he did not want Jake to have a PICC line. He wanted his IV meds transferred over to all oral meds. He didn't want him to be under anesthesia again or risk infection in another central line. They decided it was worth a shot to try and get a IV by ultrasound guidence so we went down to Interventional Radiology to try. After 2 IVs blew and a whole lot of meds to calm Jake down they were able to get one!

We came back up and spent the day sleeping off the drug haze. Jake didn't retch nearly as bad as he did yesterday. He was able to keep down apple juice for me. He still would retch but didn't vomit any. They gave him Zofran to help with his nausea. He pooped on his own, a lot! I know TMI but if you are a heart mom you will get how important that is for all of the belly issues he has been having.

THE BEST PART OF MY DAY. I GOT TO HOLD JAKE!


He still has the RA line in (Line that goes directly into his heart). We hope to have that out in the morning. They have been transitioning his medications so he shouldn't have any IV meds after tonight.  He had some pediasure tonight and even ate a few cheese puffs for daddy. Not the most nutritious of foods but hey he ate! Baby Steps.



Aidan had a fun day as well. Child Life came in and told us that this week at CHOP they are having Camp Get-A-Well-A. She gave the boys t-shirts and a schedule of crafts and activities they are having around the hospital for siblings and patients. Aidan made wooden medallions today for he and Jake. It was just what he needed to help break up the day.



We also decorated Jacob's door and windows with Window Markers. I drew his favorite train "The Little Engine" on his door with his name. The nurses loved it.




Please keep the prayers coming. He is still draining a lot of fluid. More then they would like. It could keep us here for weeks to a month. Praying that once we get the line out we can get him out of bed and help that fluid get out of his body. We are making progress!




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Sunday, July 21, 2013

Belly Troubles...


When preparing myself for the Fontan I knew we would face issues with fluid. All Fontans drain a lot of fluid from their chest tubes because of the pressure changes which occur in their body. What I did not expect was all of the issues he would have with his stomach.

When the kids have their second open heart surgery (The Glenn), they get "Glenn Headaches". Basically their plumbing is re-routed and the pressures in their body go to their head causing horrible headaches. When the kids have the Fontan, their anatomy is yet again re-plumbed and their bodies once again have to adjust to the new flow and the new pressures. This time the pressures go down to their stomach causing a lot of belly pain. For Jake he has been battling lots of air in his stomach. I am not going to lie this is horrible. Jake looks better then I was expecting him to but it is so hard watching him go through all of this and not being able to do anything to help him.

The past few days have been really hard on Jake. Here is a quick run down of what has been going on. I hope it all makes sense because I am pretty tired but I wanted to give everyone an update.

FRIDAY
Good Stuff: Got a lot of fluid off lungs
Bad Stuff:
Lots of fluid accumulated, Lost IV

Chest Tube
Jake woke up Friday feeling pretty bad. We expected the day after his surgery to be rough but his numbers were all trending down and he had a fever that was creeping up through out the day. He was pretty miserable and having problems keeping his oxygen up. His chest x-ray showed a lot of fluid on his right lung so they decided to put in another chest tube. It was really good that they did because they got 8 oz. of fluid off of his lung immediately. That is a ton of fluid! His fever went away immediately (The fever was the bodies response to the fluid) and his oxygen was a little better. His labs all went back to normal as well. He continued to put out about 20ml of fluid an hour through that tube.

One of Jacob's IVs started to infiltrate so they needed to take it out. I knew once one went the other was sure to follow. Since it was almost the weekend they called IV team who said there was no way they could get him (He is impossible even under the best of circumstances). It took over 10 tries in the OR which is the ideal place to get an IV since they are warm and asleep. I told them in the past we always needed a ultrasound guided IV placement. They called Interventional radiology but they didn't come up. The docs said that it was fine for him to just have the one IV and not to worry about it.


SATURDAY
Good Stuff: No Oxygen, No Catheter, Own Room!
Bad Stuff: Belly in tons of pain, Swollen liver, No IVs
  

The good news is Jacob no longer needed any oxygen support. The doctors were happy as long as he stayed above 80. His last IV blew which I was afraid it would. Now the only access he had was the Fontan line that goes directly into his heart. IV team tried but could not stick him and there was no one from Interventional radiology to do the ultrasound guided placement. This is exactly what I was afraid would happen. It was decided that he would need a PICC line for a more stable access site. We would have to wait until Monday or Tuesday for that. This meant that we would have to keep in the Fontan line which meant Jacob would be stuck in bed all weekend. He can not get out of bed with that line because it is directly into his heart so we can't risk it getting pulled out.

Another plus on Saturday was Jacob got his catheter out. He was able to pee on his own yay! The bad news is his stomach got progressivly worse. It was very hard and full of air. The x-ray showed stool that was stuck there along with a ton of air. We had been giving his glycerine suppositories, mirilax and Collace but nothing was working. He would cry if you went near his stomach. His liver was also enlarged but they said that is due to the fluid build up and his belly pressures.

The Best news of the day was we got our own private room. Before we were in a room with 3 other people includeing 2 infants. Everytime Jake would attempt to sleep the babies would cry and he would wake up. Having a private room is great! I can spend the night in the room with him and it is so quiet.

On a fun note, Taylor Swift visited CHOP yesterday.
I took her picture and got screamed at by security lol.




SUNDAY 
Good Stuff: He POOPED!!!!!! Got the ART line out. Still peeing on his own. Fluid is slowing down.
Bad Stuff: TONS of belly pain, Lots of vomiting, Still stuck in bed.


Sunday Jacob woke up and looked great. He was singing and repeating everything off his movie Chuggington. He asked to eat and ate one grape (We celebrate even the little victories). He just seemed so much better. Then started the major belly issues. He started wretching and vomiting. He wanted to drink so bad but he would take one sip then sit up and vomit. He started turning completely over in bed on his hands and feet and crying in pain. His belly was really hurting him. I felt so horrible for the poor baby. We again tried suppositories, anything to help him but nothing was working. He would sit up in bed and just dry heave over and over. We stopped giving him anything to eat/drink but he kept asking for it. He was no longer allowed to have morphine or oxycodone because it was contributing to his constipation.

Later on today we realized his ART line was bleeding. It looked like all of the turning and climbing in bed caused him to pull a suture. The docs agreed to take it out. I was a bit nervous about this because it is the place they would get all of the blood from for labs. They said they can access his Fontan line to get labs if need be and hopefully he will get the PICC soon and they can access that. The good thing is this line was in his groin and very uncomfortable. By taking this out he no longer had any lines in the diaper area which will be so much better for Jacob.

Finally tonight they did an Enema and he FINALLY pooped! I was hoping this would make him better but he still had a lot of air in his belly. He is still dry heaving and gassy. We are venting him and giving him gas medication. The docs say this is normal typical Fontan belly. His body is trying to adjust to the new pressures in there but unfortunately the gut takes a beating while adjusting. We know that if he could get up and moving then all of this would start to get better. The problem is the only access is that one Fontan line and as I said he can't get out of bed with that. He was supposed to get a PICC line tomorrow so we can get that Fontan line out and get him moving but the schedule is full. Please pray that they can fit him in. Another day of waiting in bed is not what I want for him. I want him to be able to feel better. If he moves the fluid and air will move easier through his body. He wants to get out of bed and I don't blame him.

Good news is his fluid is slowing down and turning clear which is all good. He has gone from about 20ml/hour to 10ml/hour. He had milk and there was no Chylous which can sometimes happen so that is GREAT! The color is changing to clear which is also great. Hopefully this is a good sign that it will be slowing more and more and eventually stop! The fluid is also contributing to Jacob not wanting to eat.

We also had some visitors today. We  had a surprise visit from my Aunt Linda and Uncle John. They live in Mass. but were in North Carolina and stopped by on their way up to New York. We had no idea they were coming and it was such a great surprise! We also had a visit from a fellow heart mom and friend Christa. She came to visit and brought some delicious food. It was great to get to take a break and chat for a while!

Jake with Uncle John and Aunt Linda! We love you guys!
Jake with Christa <3 td="">
Thank you for the continued prayers for Jacob. He is slowly getting better and I know with each day will come progress. Please pray they get Jacob in for the PICC line soon. This stay has been rough on everyone. Aidan is having a really hard time not having both his mommy and daddy with him. I stayed with him last night and Andy stayed with Jake. We don't leave Jake without at least one of us or my mom but it is hard because they both want their mommy. Please pray Jacob continues to improve and we can all be home together within a few weeks.



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Thursday, July 18, 2013

We made it...

We are officially Post-Fontan!!!!

We have dreamed of this day since Jacob was in my belly and we found out he had HLHS. We knew he would need 3 open heart surgeries to survive. Back then it seemed so far away. The day we could be Post-Fontan, the day we would no longer have this surgery looming over us. That day is here. We did it, we are officially Post-Fontan!

Honestly, part of me is nervous because he is doing so well. I keep waiting for something to happen. Thankfully he has been stable and has done better then I could have imagined. 

We started off the day by running late. It never fails, our alarm clocks didn't go off and the iPad I set as a back up ran out of power and turned off. So we woke up 3 minutes before we were supposed to be there. I only woke up then because my mom happened to wake up and see what time it was. Thankfully we were right down the street at the Ronald McDonald House. We got dressed, parked and made it upstairs in the hospital in 20 minutes! He was having his MRI study first then going straight into his Fontan. They gave him versed to calm him down before we went and boy did it work. He was punch drunk and laughed the whole way down the hall as they were wheeling him to the OR. He kept saying "Weeeeeeeee" It was adorable! I was starting to feel the tears coming as I kissed him good-bye then I turned around and saw the doctors open the doors and Jake Pointed down the hall. It was like he was saying "Lets do this". I couldn't help but smile. Off he went, my amazing strong boy.





Everything went very well. Surgery went smoothly, Jake had no issues coming off of the bypass machine or the ventilator. He was extubated by the time we saw him. He only had one chest tube, a inter-cardiac line which goes directly into his heart, and an arterial line. They had to put the art line into his groin area because his his veins and arteries are so used up. They tried the hand but were afraid pushing it anymore could risk him not getting any blood flow to his hand which would be VERY BAD. He only needs the art line for the heperin they are giving him, once they get him to therapeutic levels they can switch him to lovenox. He is on the heparin because of his factor IV Leiden gene. He is at risk for clotting so we need to have him on anti-coagulants for a few months post-op. They have already gone down on his heart med (Milrinone) and he may not even need enalapril (Blood pressure med he was on at home) anymore once he goes off of the milrinone. He is getting some dex to help take the edge off. It is like a Valium but without the blood pressure side effects. He is also getting Fetinal for pain but we are transitioning to morphine. I know I am not spelling any of these meds right but forgive me I am too tired to look it up.

Dr. Spray, Jacob's Surgeon
 We are so blessed to have him as Jacob's Surgeon.
He is not only one of the best pediatric heart surgeons in the country, but he is a great guy too!
His oxygen levels are still a little low but he is still pretty sedated so that is normal. He needed a lot of fluid pushed earlier to keep his blood pressure where it needed to be but they said that is very common after the Fontan. It is a way of getting the volume in him to "Kick start" the new circulatory system. It has balanced out now and they actually are starting diuretics to help get rid of fluid now. It is a balancing act. He has not needed any blood transfusions since coming back. They do get blood in the OR on the bypass machine but he hasn't needed any transfusions.

He is not draining that much blood into the chest tube which is great. This may increase tomorrow as his body adjusts to the new pressure in his body. If he continues to do well they are going to shut off the sedation tomorrow, wake him up and get him moving more. The plan is to remove the inter-cardiac line tomorrow and possibly his art line. The chest tube will stay in for a while but it is really small and can be pinned to his pants so he can walk. They said they will get him up and walking around tomorrow or Saturday depending on if his art line can come out or not.

The plan is to keep him sedated and calm tonight. He is waking up once in a while but I can easily calm him right back to sleep.



Thank you so much for the continued prayers for our precious little warrior. He continues to amaze me with his strength and will to fight. The next few days will be rough but I will try and update when I can.


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