Everything went well as expected and the line is now removed and he has minimal stitches. It was really nice to hold without the fear of pulling the lines out by accident. Unfortunately the doctor wants to keep him one more night to meet his billing quota. Ok, just kidding about the billing quota, but the doctor does want to keep him around another night just to be safe.

I wanted to let everyone know that Cutler is scheduled to have his central line removed tomorrow at 1:00 p.m. Should be a relatively short and uneventful surgery…Dr. Lenarsky says it’s much easier to remove than to insert. There is a good chance that Cutler will be able to go home tomorrow, but we won’t know for sure until after the surgery.

Aaron’s first day in his new job at Amdocs went well, although he is still without a laptop or email access.

I know I should add more to this post, but it is 9:40 p.m. and all I want to do is crawl into bed and get some sleep!

Thanks for the continued prayers for Cutler. God has blessed us with awesome prayer warriors 🙂

Tomorrow should hopefully be a busy day for the entire team.  I start a new job tomorrow, back with Amdocs on site at ATT, Cutler may get his line out, and hopefully Cutler will get to come home.  He has continued on without a fever and the doctor is in agreement that we should have the line removed.  We won’t know for sure until tomorrow, but if the surgeon can fit us in then Cutler will have the line removed and hopefully be home by bed time.  There was initial discussion of inserting a port, but he doctor thinks we should be alright without either and so this is the route we are taking.  The only downside is that for future blood draws Cutler will have to endure a finger or heel prick and for his future gamma globin (monthly) or medicine in case of hospitalization he will need to have an IV inserted.  But I think in the long run, given how well Cutler has done since transplant, we should be ok with the weekly finger prick to help avoid any future bacterial infection scares caused by the central line.  It will also be nice to see if he might work a bit more on his stomach without having the lines in the way and even more important I think we can get him in the pool once it warms up.  But I need to find out if this is possible given his gtube.  Unfortunately he is not showing much interest in eating at all right now, but hopefully that will change once he gets home and start to resume the family dinners. 

Despite the reason we were in the hospital it was nice to spend time with all of the 6th floor staff again.  Even better is that we, Cutler specifically, got to spend some time with Lucas.  Yesterday Cutler hung out on the pool table with Lucas as they both thoroughly enjoyed rocking the wobbly table and playing with the pool balls.  Today we hung out in a library for a bit where both boys played with some balloons and then again at the nurses station for quite some time.  I also had a few hours where Cutler wasn’t connected to anything and so we loaded up the wagon and headed off on an adventure throughout the hospital.  I think we managed to explore all corners of the many different buildings and it apparently wore him out as he decided to take a long nap on my chest while I got to watch the Masters.  The only thing that would have made it better was if it were at home.

Here is a picture of Cutler driving the wagon…

But at least this time when I was awake at 4 am it was to change a full diaper and learn that his fever had still not spiked.  In fact, he was so much back to his old self that he decided that he would like to play until about 5:30 at which time I relented and let him fall back asleep with me on the couch and he managed to sleep until 8:30.  After he woke for the day he continued to be in a great mood and so I took him on a little wagon ride around the 6th floor and he really seemed to enjoy this as he sat tall and proud like he was on parade.  Kobi is sitting with him now and still does not have a fever.  The doctor believes that we may have cleared the bacteria and so there is no reason right now to pull the line.  That being said, we will have the discussion to go ahead and pull it anyway some time next week to avoid this happening again.  For now, we are definitely in the hospital for the weekend and possibly home Monday or Tuesday depending on how everything goes over the weekend.  He is anxiously awaiting to spend the time with his mommy and I am anxiously looking forward to sleeping in my own bed, although it is nice to sleep next to Cutler as well.

Thank you everyone for their continued prayers and support, please also include Cutler’s “cancer twin” who just got over another infection and is still stuck in the hospital experiencing the same thing that Cutler is recovering from.  Poor Lucas has been through so much more than us, but he continues to prove that he is as strong a fighter as Cutler.  To be honest, I secretly think he was jealous of Lucas getting all of the attention at the hospital and so he decided to get sick so he could get some love to.

Here is a link to Lucas’s site for updates…

http://www.caringbridge.org/visit/lucasgebert

As you know from my previous post last night started out good…until 4 am when Cutler’s “sick switch” was turned on. He went from peacefully asleep to frantic crying and shaking just like turning on the lights. As I have never experienced Cutler having the chills it was quite frightening. His fever quickly spiked to 103.8 and so we gave him some Tylenol. About two hours later he was back asleep and the fever was gone and so far has remained gone. The doctor said that if he spikes another fever, the line will come out. Right now both Melanie and I are ready for it to come out given the illness it can cause, but will defer to the doctors. As I mentioned he has been fever free the entire day and we also resumed pushing formula via his gtube and so far he is keeping it down. Will see how tonight goes and update everyone in the morning.

Before turning in for the night I just wanted to provide one final update.  Since breaking his last fever around 4:30, he has yet to spike again.  He hasn’t been the happiest or most alert, but at least his fever hasn’t come back, but that’s not to say that it won’t.  Fortunately I was able to bring Mason up here for a visit after school and Cutler, as his brother always seems to do, lit up pretty quickly.  He laughed and laughed just watching Mason eat an orange push pop and then Cutler enjoyed playing peekaboo with Mason for a bit before I took Mason off to dinner.  Unfortunately I think Mason is starting to feel some stress from this as on the way to dinner he started to get pretty upset and told me that he was sad that Cutler was in the hospital.  After getting my salad and some pizza in his belly he seemed to recover and is holding strong.  I am still amazed at the bond they have and the amazing amount of love they have for each other.

A special thanks to Kobi for all of her support during this time.  She has been an incredible help and source of relief while Melanie is out of town.  Also a big thanks to Ellen for sitting with Cutler tonight so that I could give Mason somewhat of a normal evening.

For now  Cutler is sleeping soundly in his bed and I am hoping to do the same very soon so that I can be well rested to enjoy an outing to the ball game tomorrow afternoon.  I will try to provide some updates after talking to the doctor in the am.

Bacteria from the central line. Dr Lenarski believes the bacteria was within the line and judging on the time line it looks like when I flushed the lines it pushed the bacteria into the blood. He assured us there was nothing we could do to avoid this, which is refreshing. All night I was thinking about the many different places we had been taking him, so it is good to know that we didn’t cause this.
As for treatment, he is receiving two antibiotics that will hopefully knock things out. If the bacteria is not cleared they will remove his central line as this is where it is residing. Based on the treatment, we should be in the hospital for at least three days but it all depends on the bacteria. For now we are treating his fever with Tylenol which appears to be working. His fever broke overnight, but spiked back to 103.3 around 10 am. When I left it looked like he was feeling better which only happens when the fever is broken. For now I am going to get some sleep. Will update more tonight.
Here is a picture from this morning.

I was hoping to be posting about Mason’s soccer prowess complete with pictures from this past weekend. Instead I am trying to sleep on the pull out couch in the hospital. After another great day for Cutler, he woke up tonight around 8:30 and started to vomit for about an hour. Around 12:30 he finally had a fever and we were in the hospital 30 minutes later. For now they have drawn blood for cultures and other fun tests and so the waiting game begins. Cutler’s fever got to 102.2 before giving him Tylenol and he is now hooked back up to the iv pole for fluids and antibiotics. Will post more as I learn more. In the mean time, please pray that this is only a short stay and a reminder that although he is a superbaby, he is not invincible. Also pray for strength for Mason who has been concerned about Cutler going back to the hospital and especially for Melanie who is unfortunately out of town for work and will hopefully be home tomorrow night.

I hope this message finds everyone doing well.  I don’t really have anything to update since the Thursday update, but wanted to share some pictures from our Easter together.  It was a great day started at home with the boys and their baskets, then to church together as a family for the first time since September (including Kobi), then a late Easter lunch at Grammy and Bumpas, completed with some incredible weather back at the house with both boys swinging on the swingset and just hanging around as a family.

Photo time:

This is how Dr. Weinthal described Cutler today after reviewing his bone marrow biopsy, spinal tap, and blood work. In fact, this is the first time that the spinal fluid was completely clean since this entire odyssey began. Even though we still have a ways to go before we can start to relax, I cannot begin to describe the relief we feel right now.

The only somewhat negative news is that the donor marrow increased very little. The last test was 69/31 and this recent test was 73/27. The good news is that it did increase and that the marrow in general is completely clean. The doctor is not concerned with these results and emphasized that the marrow is still young.

So all in all, we are feeling really good right now. The photo is from doctors office where are hanging out as Cutler receives his monthly gamma globin. I often forget how peaceful the sight of a sleeping baby is.