Sunday, August 4, 2013

Home after first rejection episode

Well that was quite a ride! We finally got out of the hospital and home on Saturday afternoon. Things are getting back to normal and Maddy is very happy to not be stuck in the hospital any longer. She still has a bit of recovering to so but we hope she will be back to her full self on a few weeks.

Follow up will be ongoing for at least a few months. She has an appointment tomorrow morning for blood work and possibly a consult with cardiology but we can't really figure that one out. We will have to double check when we get to the hospital tomorrow to see what all appointments she will be going to that morning. They will be watching her antibody levels carefully and checking them weekly. She will also be getting IVIG monthly.

I can tell the chemo is still taking it out of her because she has been nauseous and tired all day today and yesterday. I'm trying to get her to eat little bits at a time and hoping that will keep her energy up. I'm also hoping the effects of the chemo will be over very soon! It's really beating her up! I am making pot roast for dinner but don't think she will be able to eat much. Oh we'll.

I guess the only other thing is her PFT's. They have been increasing slowly, very slowly. I'm hoping she will get back to full lung function but the doctors can't promise anything. At this point she is back to being short of breath if she walks around too much. Yesterday while she was cleaning Tweaks cage she said she felt short of breath but checked her sats and was at 99%. So at least she is getting enough oxygen. I'll continue to update the blog as she completes her follow up treatments and appointments to keep everyone posted on how her numbers improve.

Thanks again for all the prayers!

Friday, August 2, 2013

Day 18, not going home!

Well we thought we were going home but it looks like we will be here for another night now. The short story is that there was a problem while they were removing the big central line that they used for pheresis. Let me just say right now that Maddy is doing ok and they are keeping her for observation after the complication but it looks like things are good at this moment. For the long version continue reading.

Maddy got confirmation this morning that she would get to go home after she got her IVIG. I got to the hospital after work at around 1:00 and they had just started it. They administer it in 15 minute phases checking her blood pressure and temp to make sure she is not having a reaction every time they step it up. It goes really slowly and was after 5PM before it was finished. As you can imagine we were chomping at the bit to get on out of here by the time it was finished. They have a doctor, I'm pretty sure it's a surgeon, come up to remove the Hickman and Central lines before we can leave. The nurse told us that Maddy would have to sit in bed and not move for two hours after having the lines removed before she could be discharged. Bummer but oh we'll.

The surgeon ended up getting tied up with an emergency and didn't get up to Maddy's room to remove the lines until 6PM. After all the prep was done and the sterile fields were set up he went about removing the stitches that hold the lines in place. Then he pulled out the Hickman and seriously it is the biggest line I have ever seen in my life. When Maddy described it as a bendy straw in her neck on FaceBook the other day it was no exaggeration. After they remove it they have to keep pressure on the site so the vein will seal and not bleed. He had the nurse keep pressure on the Hickman site while he removed the central line. That one gave a little trouble because they are designed not to come out. The line can actually seal itself to the vein and skin so sometimes they have to use lidocaine to numb the site before they pull that line out. After numbing the area the line was removed with no issues.

Now is when things get a little weird. All seemed to be going well, everyone was chatting about how big the lines are and how crazy they looked, I even got a pic of the Hickman before he took out the other line. Then as they were prepping the sites for the final dressing Maddy said something doesn't feel right and then coughed. The surgeon said don't cough and quickly out his finger back on the Hickman site. Maddy just kept getting worse and saying she couldn't breathe and felt funny. Things moved pretty fast from there, they hooked her back up to blood pressure and O2 sats. Her pressure was ok but her sats were way down and her heart rate was through the roof. We worked on getting her calm and then the surgeon turned her over on her side, Hickman site side up. After she was able to breathe again and didn't feel like she was going to die she told they doctor that she heard a gurgling sound just before she started feeling funny.

I know it's way too late for long story short but the surgeon said he is pretty sure some air got sucked into her vein, a venous embolism, which will dissipate and be absorbed by her body. But in the mean time she has to continue laying in her left side and they have her head titled down a bit. They have taken a chest X-ray to see if there is any air in her venous system near her heart and we are still waiting on the results. It's about 9:20 PM and like I said at the start I'm sure we are here for the night. I'll add to this post if anything happens or changes. In the mean time here are some photos for your enjoyment and probably not enjoyment.

This is Maddy when we were waiting for the surgeon to come remove her lines.

This is the Hickman line. I know there is nothing in the shot to give perspective. I'm not joking when I say it's about the size of a straw.

And finally a picture I just took of Maddy feeling all crappy and not wanting to go through any of this any more!

11:30 PM, X-ray results

The results for the X-ray came back and all is clear! Maddy is allowed to sit up again and they are weening her off of the O2. They put a heart monitor on her so they can monitor her over night. She is on 3 liters of O2 with just a nasal cannula and her sats are around 96. I'm guessing she will be back on room air in a few hours.

The surgeon came back in after taking care of the emergency he was called away for. He mentioned to me before he left that he was being called away to repair someone's bleeding kidneys. I asked him how the guys kidneys were when he came in and he talked to me like I am a vascular surgeon too. LOL. I think he likes us. Anyway he was very happy to see Maddy sitting up and almost smiling, actually I think she cracked a smile or two while they were chatting. He said that she gave him quite a scare and he is very happy she is feeling better. She said "you were scared!?!" That got laughs all around. He is on call all weekend so he said he would pop in again in the morning if she is still here when he gets to the hospital.

One last picture before I try and get a little sleep. This is Maddy happy to be alive!




Thursday, August 1, 2013

Day 17, Final Chemo

To say that Maddy is worn out would be an understatement! But the final round of pheresis and chemo are finished and we think she is in the home stretch. She was told by the doctor that she could go home at the end of this round of treatment and was hoping to leave today, but alas she forgot he mentioned one more round of IVIG which is not until tomorrow. So, don't want to jinx it but we should get out of here tomorrow.

As for today, Maddy was feeling pretty crappy for most of it. She can't seem to eat at all without feeling like she is going to vomit. Just taking a sip of water had her heaving for a few hours. And she has been getting killer headaches. She has been taking strong pain killers to combat them but I'm sure that is just adding to the problems. She is not sure if all this is from the chemo and all the treatments she has had to endure. The heaving session was hours before she got her final dose of chemo so we can't blame it on today's round. She is worried that she has developed C-diff, which is an intestinal infection, commonly linked to long courses of oral antibiotics. In normal people you know you are getting it because you develop diarrhea. However, both my kids present with the inability to keep anything down instead. We are so backward. This is the intestinal infection Ethan almost died from when he was six and Maddy has had a few times and the doctors never believed her because it didn't present with the common symptoms. So we are always on the look out for this pesky little bugger. It's very easy to treat with an oral medication and usually clears up within a few days. Hopefully they will just go ahead and treat her just in case. I don't think it can hurt at this point!

I guess that's it for now. Hopefully I will be posting a final update for this visit tomorrow from home. Please pray for that. Maddy is tired and wants to be home! Oh, and so do I!