Out of the ICU

Zoe got out of the icu today which is always a good sign, even though we prefer the solitude up there compared to the peds unit..."crazy town." Her heart rate has come down tremendously, 100-110/min down from 170+/min. Her transfusion and albumen (a substance that replaces protein in the blood) treatments have perked her up a lot. She is still retaining lots of fluids, but the docs are watching her levels pretty closely. We're still not sure where she stands with the C Dif., her belly is still distended, but the docs are comforted by the fact that her tummy is gurgling, relatively soft, and she's tolerating her feeding for the most part.

A ct scan last night came back looking good this morning. Dr. Sekhar thinks that the infection in her neck looks good right now, but we'll be doing another scan early next week to check again. Another surgery to clean out the infection may still need to happen.

While I was sitting in the ICU waiting room today eating some breakfast (we don't eat in front of Zoe because she can't eat), I heard a man say that there is no way he can stay here at the hospital with his son for more than two weeks or he'll lose his mind. In the beginning I felt the same way, but amazingly we've adapted to this environment. It was so hard coming back here after having a taste of home and getting into the mind set of being done with this part of the journey. It took a couple of days, but we've slipped right back into the space we were in when we had no idea when we would be taking Zoe home. We're going to be OK. So will Zoe. She's sad right now, but coping pretty well. I've been so worried about her emotional state, but I'm reassured by her smiles today. She is so amazingly strong...I'm convinced that she can do anything.

Try to keep you informed, and thanks to everyone for your love, comments, financial help...everything.

Colleen

How Zoe's Doing...

Zoe is still in the ICU today, and we're still waiting and seeing if more surgery will be needed. Her blood tests came back showing that nutritionally she is very depleted. Her blood vessels are leaking fluid all over into her body so she is very puffy, and right now she is getting a blood transfusion to try to help replace protein, iron, and other nutrients into her blood. She has a fever, elevated heart rate, and is still very lethargic. Her body is processing her feedings, so that is a good sign. The neurosurgeons are going to take her dressing off later, and check out her wound and drain.

Luckily I think we've figured out our hotel situation with DHS which is a huge relief. Living in the hospital is the fast lane to going insane, and that's the last thing Zoe needs for us to be heading for. Henry and I take turns doing the night shift at the hospital, so that at least every other day we're getting decent sleep, and a bit of an evening break to have some alone time.

Today I'm feeling a little all over the board. Zoe's belly is distended again, and her blood counts are fluctuating up and down every day. She has so much going on. I'm struggling with not knowing definitively which direction she is going in. Is she getting better or is she getting worse? We don't know yet. All the meds that she's on are "let's see how she does on them" meds. As far as the way she looks...not as good as yesterday in my opinion. I'm trying to relax, and trust that the docs have her on the right path, and to just pray, and trust that her body will find the strength it needs to fight these infections. She is very strong in spirit if not in body, and I really have to dig deep now to keep my spirit strong for her.

Colleen

Back In Seattle...

Our homecoming was unfortunately not what we hoped it would be for Zoe. We got home last Thursday, and by Saturday we had Zoe at Emanuel Children's Hospital in Portland with what we thought were complications surrounding the C Dif. infection. Zoe's poor little belly was immensely distended, and her oncologist feared that she might be headed for toxic mega colon which is extremely dangerous. She was retaining fluids in her abdomen as well as other areas, and there was swelling in her colon. She immediately became NPO (which means she couldn't take any food or drink). Since Zoe was put on the dex steroid her body tells her that it's hungry night and day and is essentially insatiable. She proceeded to literally scream for the next two days from hunger, and on Monday morning we sat her up to take her to the potty and found a stream of discharge going down her back from her first op site. To make a long story short Zoe and I ended up being life flighted back to Harborview in Seattle, and she was in surgery the next morning for a an infection in her op sites. Dr. Sekhar went into her original op site and flushed out all of the infection, Dr. Mirza removed a lose piece of her bone graft that was infected, and the ENT Dr. Moe repaired her pharynx. Turns out there was a "communication" between the injury to her pharynx and her neck down to her collar bone. What this means is that when they did the first surgery they removed some tumor from her pharynx and stitched it up, but it apparently never healed completely so when she began to take food and drink again this caused an infection which then spread to the inside of her neck. The infection is quite complicated and she may require more surgery to clean out the infection again, and the ENT doc may need to do more repair on the pharynx by pulling some muscle from her neck to help close the hole. This tissue separating the inside of Zoe's throat and the inside of her neck is quite thin and delicate so this makes it tricky. Zoe will not be able to eat or drink for at least a couple of weeks until her pharynx is completely healed. She has a feeding tube again which I know she won't be too happy about, but the docs here think we're getting a handle on the C Dif. so she is able to have her feedings. Zoe will be on IV antibiotics for three months to make sure that this infection is completely eliminated. We don't know how long we'll be in Seattle this time around, but after this experience I'm really in no hurry to get her out of here. I want to be sure this time that all is well. That was a very terrifying experience for all of us, and especially traumatizing for Zoe. There was really no way of knowing that this was brewing, her CT scan right before we left for home didn't show a thing. It must have been silently brewing for some time, and then for whatever reason blew up into a full blown infection. All the docs here have been wonderful...so very concerned and sensitive to all of our needs. Dr. Sekhar, and the other surgeons that operated on Zoe yesterday made themselves instantly available for her (which is no small task), and I am so grateful to them. Today I feel reassured that all will be OK....there were a few days there that we didn't know what was going on inside her tired little body, and my mind inevitably went to the scariest places. It's so true that the devil you know is better than the devil you don't know.

Right now Zoe is resting. Her white cell count has gone down (that's good), she is getting nourishment through her feeding tube, no fever, and the docs feel good about how she's doing....which means I feel good. Now it's the wait and see game. Henry and I are doing our best to take care of ourselves. We're trying to get a place to stay lined up again, but running into some trouble because DHS is not returning our many phone calls. It looks like we may be living at the hospital after tonight, but we're remaining hopeful that they will come through at the last minute.

Zoe's awake and it's time for me to read some more Harry Potter....gotta go.
Love and miss you all.

Colleen

Arrrrggghhhhh!

Zoe just can't catch a break. Just after her last surgery, she contracted a stomach bug (we posted about this earlier). We are now back in the hospital due to complications surrounding the C. Diff.
At first we thought that she may have developed a condition called Megacolon (you an google it), but after a CT scan, one of the Dr's says that most of the swelling is fluid in the abdominal wall, and other tissue. While we are still not possitive about the cause, we are hopeful about the prognosis. I am a bit frustrated that we were being told again that it was nothing to worry about, when it is. It tells me that as parents it is our job to make sure that the right questions are being asked, and that we are finding difinitive answers. The main thing is that we are staying ahead of each of these things, as we find them. I just wish we could stop these things, before they happen. We were supposed to be having a break to heal and enjoy the summer.

Henry

We are home!!!

It was not a fun trip, but we survived it, and we are home.

Henry

--
William Henry Perreault
(541)543-6231

Going Home....Finally!

I finally feel confident in saying that we are finally going home! It's been a wild ride, and there's been a lot of ups and downs. This chapter is coming to a close and we beginning the next.Zoe is slowly recovering from her intestinal infection so we feel good about taking her home. We will be staying at our apt. in Seattle until Thursday and then heading back to Portland. Dr. Sekhar does want to see her here again in two weeks for some scans to see how her healing and bone growth is doing. Sounds like radiation will begin in two months. In the meantime it will be rehab in Portland.

We will post more this weekend.

Colleen

Diagnosis

Ok......so, first of all, don't worry if you came to visit Zoe recently, you are not at risk for getting this kind of infection unless you are immuno-compromised or have had long term antibiotic therapy recently. Zoe has contracted a very contagious (to other hospital patients) bacterial infection called Clostridium Difficile. She will be started on an antibiotic called Flagel today, and will be retested for it after one week to find out if it has gone away. I'm very relieved that we know what it is, and she can be treated now, because it is not fun to watch her suffer with no end in sight. It's another bump in the road that we need to get over, but we will. I will say that this is not a good time for anyone to visit unfortunately. Henry and I are required to gown up, and wear gloves the whole time we are with her to prevent spreading this to any other patients we may come in contact with. A testament to how strong Zoe's body is...her fever and white blood cell count has gone down today from yesterday without any treatment yet! She is amazing! She should be able to go home with antibiotics in a few days.

Colleen

Sickies

So, there has been a set back in our plan to go home. Zoe has come down with a nasty gastro-intestinal bug that is making her life pretty miserable. The docs have run every test there is to figure out what it could be, and everything has come back negative so far. They think it's a bug that is common in a lot of long term hospital patients that essentially happens when the good bugs in your intestines are killed off from antibiotic treatments, so the bad bugs take over. She's in lots of pain, stomach cramping, vomiting, diarrehia, the works. It's insult to injury, having gone through these surgeries, and then to have to deal with this. If it is what they think it is, then she will need more antibiotics, and she is being started on some acidopholis today to try to build up her good bugs. In the meantime they are giving her IV fluids, and anti-nausea meds. We probably won't get results back until tomorrow, and hopefully headed home in a few days. We'll see. Keep you posted.

Colleen

PayPal

Due to the fact that we are not a 501c3 non profit organization, paypal has denied us their services. We are currently working on another online solution. At this time you can deposit into a contributor account at any Wells Fargo by asking the teller to deposit into the account for Zoe Perreault.

Going Home?...

Yesterday we were told by Neurosurgery that Zoe could go to Seattle Children's Hospital as soon as they would have us. We just needed to talk to the Rehabilitation services first. Rehabilitation services said they would be ok with us going to Legacy Emanuel in Portland.
This morning the Rehabilitation Services Attending came in and evaluated Zoe, and he felt that not only could we go back to Portland, but we would only need to do out patient rehabilitation, so we have done a consultation with Physical Therapy, and are waiting to do a last minute CT scan, then we should be getting discharged. of course now that I said that we will end up getting stuck here for another week.

Everyone is saying that we an go home but no-one is committing to it. We have been hoping for a solid plan, but we are not really getting one.

Well my biggest hope for Fathers Day would be to be home and have both of my girls with me for the day.

So Dr. Sekhar
has said that, he is sending down the post op MRI to the Loma Linda Univ. Medical Center
, upon review they may want him to remove the remaining tumor, or they may feel like they can get them with the radiation. If they want him to remove them, he wants to wait for 2 months before doing so. If they feel that they can radiate them, then he thinks that they would want to start in about 2 months.

So it looks like we will be in Portland for at least the next 2 months either way. I wonder how this will work with the Halo on, I can't imagine that they would radiate with the halo on, and if we have another surgery that may extend the time that she has to wear the Halo. The Orthopedic surgeon, Dr. Mirza said that he would like to see 3 to 6 months in the Halo, but that the pins only last for 3 to 4 months. Well, I guess we will just have to roll with the punches like we have been, and it will work out how it is supposed to.

Thank You
Henry

Final Results

Dr. Lee came by last night to show us the post-op MRI. Unfortunately, not all of the tumor made it out. There are two small pieces that remain next to her spine, but at this time they are not threatening her spinal cord. Dr. Sekhar is not planning to remove them unless it becomes necessary to later. There is the possibility that they may not grow, that the radiation she will have will take care of them, or that they could go away on their own.
I personally am hoping for the latter. On the other hand, they may begin to grow, and need to be removed during another surgery in a few months. We'll see. Seeing the MRI was amazing! When the tumor was first discovered we viewed her initial MRI which was devastating. Now I've replaced that image in my brain with the current MRI and it is such a relief. Dr. Sekhar is a truly gifted surgeon, and has accomplished what no other doctor thought was possible. The amount of gratitude I feel is overwhelming...I don't know that I will ever be able to express it in it's entirety.

Zoe is doing great. She is currently asleep in her "princess chair"(the comfy chair that sits next to her hospital bed). Her pain is under control, and I'm pleased because she is becoming more communicative about her pain. After her first surgery she was expressing it in other ways such as through anxiety, anger, and crying which you can't always rely on to be indications of pain.
We didn't want to over medicate her, but she would often times deny having pain, because she was more afraid of what would be done if she admitted to it. Now she know the process, and is more comfortable with what goes on in her daily care. She's eating, drinking, and is frustrated that her body is not quite ready to get moving again the way she wants it to. I'm also happy because after this last surgery they put a smaller halo brace on her. The last one was apparently too big for her (which leads me to wonder why they put it on her in the first place...but I'm not going to dwell on that), and I think she will be able to adapt to it easier.

Not too sure what the next week holds for us, but we'll try and keep you posted. She should be out of the ICU, and down in the Pediatric Unit ie. "Crazy Town" by the end of today or tomorrow. Woohoo!

"Hope" is the thing with feathers-
That perches in the soul-
And sings the tune without the words-
And never stops-at all-

And sweetest-in the Gale-is heard-
And sore must be the storm-
That could abash the little Bird
That kept so many warm-

I've heard it in the chillest land-
And on the strangest Sea-
Yet, never, in Extremity,
It asked a crumb-of Me.

-Emily Dickinson

Thanks for all your love!
Colleen

Super Zoe!!!! or The tumor is gone!!!!

At 4pm Dr Sekhar came to tell us that he removed everything that looked like tumor. He could not be sure hat he got everything until after the post OP MRI. 2 hours later Dr Mirza came to tell us that it went well, but he wasn't happy with the angle that he had to approach the bone graft from, but he feels good about the placement. He wanted to get a CT scan directly after the surgery and he may want to go back in and move it. We did not hear from him again all night, and by 7:30pm Zoe was in the ICU, resting.
Colleen spent the night with her, in the ICU. This morning Dr Lee(he is part of the Neurosurgery team) Said that the scans looked good (as he smiled). She has her breathing tube out this morning, and is starting to take things by mouth again.

We have not had anyone say for sure that all of it is gone, but that is the distinct implication. Now we are looking to Radiation probably in Loma Linda California.

More info later
Love you all
Henry

Last Surgery

The docs let us take Zoe to our home away from home last Wednesday for a short hiatus. She was doing so well, walking, taking all her meds with no problem, and Henry and I had taken over on much of her daily care because we feel better being more involved, and it's less scary if mommy and daddy can do it instead of the nurses. It felt so good to take her away from all of this necessary chaos. For as much healing takes place inside of hospitals, they can also be quite toxic. It's almost impossible to have uninterrupted rest, there is trauma happening sometimes in the bed right next to you, and for a child the constant barrage of white coats speaking about you in a language that you don't understand invokes nothing but terror. I got to rescue Zoe from all of this for four whole days! We went grocery shopping, to the bookstore, to the Japanese gardens (Zoe loved feeding the Koi), and just hung out. Zoe rested, ate, rested some more, and ate some more. Lovely.It was incredibly difficult to bring her back to it all this morning, but I'm so comforted with the hopeful, although not guaranteed knowledge that this should be her last surgery...at this point anyway.

Dr. Sekhar will be attempting to remove the rest of her tumor from the left side of her head this time. Dr. Mirza will also be going in to perform another bone graft on her spine. The surgery is expected to run 8-10 hours, and she will go directly to MRI and CT afterwards. Zoe went into surgery without any meds to relax her, and she did amazingly well. Sadly, she is getting used to the pre-op routine. We read to her while waiting for surgery, and this time she just lied there with her eyes closed and listened, only getting upset when a doctor or nurse came by. It's going to be a long day. We'll post how she did tomorrow.

Colleen