Saturday, August 19, 2017

Post-Op Day 11

It is 4pm and it has been a busy day.

My sister, Sandy, got in last night. This morning, we got up and went to the hospital. We got here just as they were rounding. They said the plan was to trial her on trach collar. I said I would be more comfortable with short sprints today after what happened yesterday.

Honestly, I don't think she's any better today than yesterday. She might look a little better in her skin color, but nothing has really changed. She is still not moving her arms and fingers and she's still pretty noncommunicative. For example, they changed her and one nurse noticed that her hand was kind of stuck under her butt. The nurse had to pick her hand up and move it for her. Totally not normal for her.

My sister hung out with Harlie while I went to the gym across the street. It was practically empty, so I had a great workout, ran one mile on the treadmill, and then walked back to the hotel to shower and change. Sandy called to say that they were getting ready to put her in her wheelchair so I hurried back so I didn't miss it.

Getting her in her chair went pretty well. I took advantage of the situation and brushed her crazy hair.

She lasted about 8-10 minutes and started to drift forward. I could tell she was getting tired. I really don't want to push her too hard. So we put her back in bed.

She has been tachypneic (fast breathing) today. So, they are leaving her on a rate on the ventilator and are not going to do any trach collar trials today.

She has moments of getting really hot and sweaty. And she has spiked a fever today. They brought in a little fan that clamps on her bed rail.  They mentioned that Methadone might be down the road. We'll just have to wait and see. They did have to give her Morphine today.

She has an infection in her belly, from where they took the fat graft for her jaw. This is what it looks like.

So, they did an ultrasound to see if there was fluid. I think they might have seen something because they ordered an official ultrasound. Still hasn't gotten here.

But they removed the dermabond and are going to come back to remove the stitches in her belly button and get a swab for cultures.

We did trach care and I saw what I think looks like a patch of necrotic tissue under the trach. So, I'm pretty sure that's infected. Her nurse called ENT to come take a look. So we will see what they think.

Either way, she's back on Vancomycin and Zosyn. Of course they just pulled her arterial line today, thinking they were done with blood cultures. So, that meant they had to stick her for blood. Shortly after that was over I noticed her mouth was bleeding. Looks like her bottom teeth are the cause. I swear they are looser. I could be paranoid though. Really hoping I am. I really, really don't want her to lose those teeth.

I just tried to put those tongue depressors in her mouth, but she did not tolerate it like she did yesterday for Dr. Haas. And I just can't make her do it. I'm not sure if she's just had a harder day, or if she is being less cooperative with me vs. him or what. And it looks like she has an ulcer in her mouth next to one of her teeth. I mean, there's only so much pain I can watch her experience.

And I'm starting to lose my politeness regarding this "trach training." For the love, can't I be grandfathered in or something? NINE years is no joke. I got it. It just feels insulting. Deep breaths...

Just found out her white blood count went from 10,000 to 20,000. So, as if we needed another marker for infection.

Today has been so busy. Things literally change minute by minute. One second she looks "good" and the next she doesn't.

Hopefully tomorrow will be better.

Sandy got Harlie an awesome balloon, which really brightens her room.

It is now almost 7pm. We will wait until the night nurse gets here and finishes report, and then we will head on out to get dinner.

So, overall, she's pretty damn miserable. I feel so, so bad for her.  There was no progress today. Only setbacks. But hopefully tomorrow will be better.

As always, thank you for your love and support. Despite our current situation, I do feel so incredibly lucky to be blessed with such an amazing community full of family, friends and even people we haven't met, supporting us the whole way. Thank you!

Much love,
Christy xoxo

Friday, August 18, 2017

Post-Op Day 10

When I got to her room this morning, she was in her wheelchair! She sat up for about 10-15 minutes, which is great!

But she is less communicative than she was yesterday. Barely motions yes, or no. She's not using her hands at all. Its as if her arms are really heavy. Same with her legs.

It has been a busy day already, with occupational and speech therapy coming by. Someone also brought a therapy dog. Harlie didn't seem to care at all, which is very unlike her. She didn't even want to look at the dog. She didn't want to interact at all with OT or ST.  I asked her if she was mad and she shook her head no. But I don't believe her. How could she not be mad?

She is off Morphine completely and they turned off the Dex.

At around 11am, they took her off the vent and put her on trach collar. She coughed up tons of secretions non-stop. Bubbly secretions came out of her mouth, which is a good sign that air is getting past her trach. Her nurse and I literally never left her side, constantly suctioning and wiping secretions from her trach and mouth.

A bit after noon, I guess her body had enough and she started wigging out. She got really restless, wide eyed, purple faced, and sweaty. And she was reaching out for me. We watched her sats go down to 65 in seconds. She looked exactly like she did when she was on bipap last week, like she was frantic. I just can't describe how awful it is to watch her struggle to breathe. If I didn't have PTSD before, I can promise you that I have it now.

They put her back on the vent and she still appeared to be gasping for air. Her mouth opened for every breath. It has now been an hour, and she is still purplish/red. Since she's not on anything for pain (except Tylenol) they were wondering if that was a contributing factor. So, they gave her some Morphine and Versed. And they are going to put her on Oxycodone. She never complains of pain, so we can't count on her to tell us.

It has now been over an hour and a half, and she is finally settled and appears to be comfortable again. They have decided to slow things down a bit. She isn't going anywhere anytime soon, so there's no reason to push her so fast.

Its now almost 5pm and it has been a busy day with lots of docs coming to visit. She's watching tv, which is a nice change. Never thought I'd say that!

They are getting ready to move Harlie to a bigger room, still in the CICU.  When she had that episode earlier today, this room was full. So a bigger room will be nice. Plus, we are right by the main doors to/from the unit and it is very busy and noisy. Doing rounds with people going in and out in the middle of it is not ideal. So, I'm not sad we're moving.

Whew, I am wiped out. Too tired to write anymore. My sister is flying up tonight. So, I'm looking forward to seeing her.

I wish I could thank everyone individually for all you've done. The words of encouragement, kind comments, texts, messages and very generous donations are appreciated more than I could ever say. Being able to focus on Harlie and not worry about how we are going to pay for this is a true gift. Thank you from the bottom of my heart!

Much love,
Christy xoxo

Thursday, August 17, 2017

Post-Op Day 9

So, yesterday she didn't wake up. She opened her eyes a few times, but they didn't focus on anything. At one point we were just talking to her. Then I said, "Harlie, do you want me to leave you alone?" And she nodded her head "yes."  It was pretty funny, because that's SO her. But, nothing else happened for the rest of the day.

They are weaning her off her Morphine. But since she was on a drip for more than 7 days, they are looking for withdrawal symptoms and trying to be gentle. She's been on a ton of meds. So she's being weaned from several.

A nurse came in yesterday to talk about trach training (for me to learn how to do trach stuff). I know she doesn't know us, but trust me when I say I don't need any trach training. She had it for nine years, and didn't have it for two. I could still change a trach in my sleep. But, I'll have to show her and that's fine.

The case manager came by to confirm all of our info to begin the process of insurance changes and ordering the supplies and equipment we'll need. Being trached changes the kind of Medicaid program she needs. And thinking about what we'll need to go home, and what will need to be at home, for us to take her home makes us so sad. We got rid of everything. It had been two years, and we never thought she would be trached again. It is very hard to start to think those things through, so I stop. We aren't even talking about going home yet anyway.

Tom and I got up early this morning so we could be at her bedside at 7:30am. You can't come or go between 6:30-7:30, both morning and night. That is "distraction free time" for the nurses to give report.

Anyway, when we got here, she was much more awake than yesterday. The night nurse washed her hair and braided it. I went to take a picture, and surprisingly Harlie smiled! I couldn't believe It! She is so amazing.

She's trying to communicate, but she can't talk because of the vent and her general weakness. And she can't sign yet because her hands and fingers are still really weak. She hasn't gotten control of them yet. She mouths words, but I just can't understand what she's trying to tell me. I can tell she wants water. But they said she can't drink anything yet. She has too much muscle weakness to let her swallow. So we are putting some water on a toothette and putting that in her mouth.

Tom told her she had a trach again, but we don't know if she understands. She's pretty groggy still. Tom had to leave a little after 8am. And that was hard. If we had known, he would have stayed and worked over the weekend, coming up later so he could be here during the next couple of days. But we didn't know. And when your child gets a trach in the middle of the night because she couldn't have lived without it, you can't help but want to be there. So, we made the best decisions we could at the time.


She is starting to cough a lot. And she has a ton of secretions. But she is completely silent while on the vent. And I just want to suction her, but they have a whole process, so I have to be patient. I totally remember feeling this way in the past, too. It's just so hard when I want to help her, but I can't.


They just rounded. They are going to start weaning her vent more. The goal is to get her on trach collar tomorrow. I know she'll be happier then. But they want to get her on less to no Morphine first.

I asked them how much longer they think she will need to stay in the hospital (told them I will not hold them to it as I know things change) and she said 10 to 14 days would be her guess. ☹

We did trach care and changed her trach ties this afternoon. Still remember how to do it...

She's had a low grade fever today. Hopefully that won't last long.

Dr. Haas came by and worked on ways to stretch her jaw. He said that she is making him think outside the box. So typical Harlie. I told him she doesn't discriminate, she treats all her docs the same, and never plays by the rules.

So, he is trying these tongue depressors. Starting with three and will work up to five, I think. She's tolerating it right now, so I know she's still loopy. Pretty sure she's going to throw those out when she is more herself.

Some friends visited today! Our friends Dale and Patty and their son are visiting some family here and stopped in to say hello. It was so nice to see them!! They made me laugh and that's always good! Thanks Dale and Patty!!

That's pretty much it. Overall, slow progress, which is better than no progress at all. I'll certainly take it.

I'm sure tomorrow will bring more excitement as she becomes more herself.

Thank you, as always, for continuing to keep Harlie, and the rest of us, in your hearts, thoughts and prayers. We are staying strong and trudging forward, one baby step at a time. And we couldnt do it without you!

Much love,
Christy xoxo

Wednesday, August 16, 2017

Post-op Day 8 and Trach Change Day, AM Update

It is so weird to have such mixed feelings about today. I hate seeing her in this paralytic state, so I'm SO looking forward to her waking up. But, I'm really not looking forward to her being in pain from the various sources (pressure sore, IV sticks, bloating, mouth, ear, jaw, etc.). And, of course, the realization that she's trached again. How weird must that be... to wake up almost a week later and wonder WTH happened?

As much as I've worried about it, she will probably accept it and move on, as she always does, because she's so amazing. And that's pretty much how she's handled everything so far.

It is 10am and they finished rounding. We are just waiting on ENT to come and do that trach change. I've been told they are going to put the same kind and size in that she has now, a Bivona 4.0, cuffed. The cuff can be inflated or deflated. While inflated, it fills all the space around the trach tube and her trachea, so that the only air that goes in and out, is through the trach. And it is inflated while she's on the vent becuse it is easier to manage her vent settings when no air escapes.

However, when off the vent, the cuff can be deflated so air can escape, and go through her vocal chords, allowing her to talk. This is our hope.

Our nurse, who is great and was her nurse yesterday, said she can have education come by to talk to us about the vent, should she not be able to come off. Clearly, it is our hope that she can breathe on her own and not require the vent. For one, life will be better for her. And two, her cardiac physiology does much better without ventilated breathing. So, I told her we aren't ready to talk about that yet.


ENT just arrived and are setting up for the trach change. Its pretty crazy how big of a deal this feels when we've done hundreds of trach changes before.


Its done and all went well. They turned off her paralytic and now we just wait for her to wake up.

I'll update again later.


Tuesday, August 15, 2017

Post-Op Days 6 and 7

August 14 , Monday

Thankfully, she seems to have settled down and we are starting to see small amounts of improvement.

They took cultures from her trach secretions, blood and urine, and all grew something, meaning she has infections. That explains her really bad night Saturday night.

Infectious disease just came in and they are going to figure out her antibiotics again. They said she has staph aureus in her blood.

Since they put her on Vanc and Zosyn, she has not had a fever. But her WBC were still a little high. So, they are going to take blood cultures every day until they show negative for 48 hours.

Dr. Padwa and Dr. Haas came by. Dr. Haas put some braces on her loose bottom teeth to help them heal and hopefully prevent her from losing them. She will go home with them and our local orthodontist will remove them when its time.

At this point I feel like I have a really good relationship with her docs. They seem to be ok with my sense of humor. So when I saw him I smacked him on his arm and said, "She lost a permanent tooth and I'm mad at you!" Because he was the one that said it would be fine. Of course I had to tell him that I know they don't know all the answers and that Harlie doesn't follow any rules. And that I wasn't really mad at him. Although, I'm pretty sure he knew that.

Dr. Padwa and I joke around that she regrets ever taking Harlie on as a patient and that she will never operate on her again. She told me that Saturday night/Sunday am her and Dr. Resnick were texting about them not being able sleep because they were so worried about Harlie. Harlie is surrounded by such a great group of doctors. Every single one has been so great, caring and compassionate. And Dr. Padwa says she's not going anywhere and that she's committed to Harlie. Which, I already knew.

While headed outside for lunch, I ran into Dr. Mancuso (who was with her on Thursday night when she got the trach). He is wonderful. And he told me that Harlie got the right mom. Which, is always nice to hear. And this morning (Tuesday) he stopped by her room to say hello and see how she was doing. Love him.

We also spoke to the hotel about our stay. They were so nice. We had to move rooms to get a cheaper rate ($210 per night). And they put us just a few doors down so it would be easier to move. And they threw in free breakfast whenever we want it. Which, has been/will be each day. ☺

That night we went to the Red Sox game at Fenway. We have never been. And we didn't have tickets. But, a friend of a friend of a friend... let us in. Shhhh. So, we just walked around and watched the game from different areas. The Red Sox did not have their best game, so there were plenty of empty seats. Honestly, we just enjoyed being there, regardless of who won. It really is beautiful. And we had a great time.

August 15, Tuesday

We were going to wake up early and see if we could pay to do a yoga class down the street. But, when the alarm went off, I just couldn't. The kind of tired you get in a hospital is different than a normal tired. So, we went back to sleep.

After a couple of hours we got up, had breakfast and went to the hospital. We caught rounds and then checked out the gym across the street. When Maggie was here she said she overheard someone talking about how they offer free membership to parents who have children here. So, we went to check that out.

It was good. They didn't have bumpers to do deadlifts, so that was weird. But we managed. And we did a full workout and we both felt like ourselves again. So, that's really good.

As far as how she is today, she's the same, and no worse, which is good. They had to stop her feeds again because her belly was getting really big and her body wasn't digesting it. Since she's on that paralytic, it really slows everything down. They are constantly adjusting her Lasix (direutic) to try and get a good fluid balance. Her belly looks terrible from the fat graft.

Forgot to mention that Dr. Padwa said they were not going to stretch her jaw with that device anymore since that was so hard on her teeth. And they are well aware of my feelings about her teeth. So, they put a soft wedge thing in her mouth today. Its attached to the string in her mouth.

They also pulled her PICC line as it was a potential source of the blood infection.

So, tomorrow is the big day! They will change her trach (hopefully in the morning) and then turn off the paralytics, to let her wake up. We don't know how long it will take for her to wake up. It's different for every person. So, Tom and I will be glued to her side all day. I will be so glad to see her open her eyes again. I feel like I haven't "seen" her in so long. It is so unsettling to see her just lying there like that. Plus, they are having to keep ointment in her eyes because she doesn't close them all the way.

And the bottom line is that we can't see where she is in her recovery until she wakes up. The sooner she can breathe on her own, the better.

Tom is going back home on Thursday. And my sister, Sandy, is flying up Friday afternoon. I think I forgot to mention that the visitor rules are different in the CICU than they are in the Medical/Surgical ICU. In the CICU there are only two people allowed bedside. In the MSICU, they were fine with four of us. Luckily, she didn't get moved to the CICU until after Maggie left.

Okay, that's it for now. Hopefully all will go well tomorrow. While I'm excited to make progress, I'm not looking forward to her finding out she has a trach again. I don't know how she could possibly understand. I feel so bad for her. She loves the pool and getting things off the bottom and she was showering independently (both of which will now be out of the question). While I am more thankful than words could say that she's HERE, I am so, so sad for what she's lost (and for what we've lost), again. One day at a time, I suppose.

I just want to end by trying to thank you all again for all the AMAZING support you've given. You have all been so generous, in monetary support and love. I just don't think I'll ever be able to express how grateful we are. We are feeling the love and it is keeping us strong!! Thank you so much!!

Much love,
Christy xoxo

Sunday, August 13, 2017

Post-op Day 5

It's so hard to believe we are only in post op day 5. Wow. It's been a busy 5 days.

I had such a hard time sleeping last night. My stomach hurt so bad. And so many things were going through my mind. So hard to shut those thoughts down. I finally fell asleep and woke up early. I called her nurse to see how she was. I'm so happy we got the same nurse we had yesterday. It really makes such a huge positive difference to have nurses who repeat.

Anyway, she said Harlie had a really rough night last night.  But that she had settled down a bit.

Her really low blood pressures could indicate a big infection. So they changed her antibiotics again. Now she's on Vancomycin and Zosyn.

They are giving her some blood. They could not move her at all last night, because she was so precarious. So, she has developed a pressure sore.

And she lost a permanent tooth this morning. Ugh. Do you know how long a healthy, permanent tooth is? It looks way to long to fall out, trust me. And more are loose. Really, I just can't.

They are moving her to the cardiac ICU today. They are having to consult with them so often now that it just makes sense to be there.  She's less post op care and more cardiac care now. That should happen this afternoon.

When we went to Walgreens to print some photos out for Harlie's room, I picked up some cards and we played in her room. We spent more time in her room today, but we wanted to.

It's now 5pm, and she's now in the cardiac ICU. Maggie just left to go back to Richmond. I'm going to miss her. She was a really good distraction for me.

Maggie and Noah saying goodbye.

Harlie has a temperature probe that goes in her nose and sits in her esophagus. They could not get an accurate reading from anywhere. So, they are going to leave this in until she goes some time with no fevers.

I just saw her pressure sore and it made me flinch. Her nurse said that it doesn't blanche (?) which means it is deep. Ugh.

They are stopping the jaw stretching until we discuss things tomorrow. It just seems to really upset her balance overall. She's had difficult spells after each one. She just needs some rest. And those poor freaking teeth need to heal a bit.

Earlier today I asked her nurse to tell me something good. I'm usually pretty freaking good at finding a silver lining on my own. But this whole hospitalization has thrown us for a loop. We are in brand new territory all around.

Anyway, she said that she had twice the amount of secretions yesterday than she has today. And that she is on less oxygen. She was on a lot more yesterday. And I think her vent settings are a bit softer today vs. yesterday. So, overall, she felt that her respiratory status was improving a bit. So, that's good. We'll take it.

We have not told the boys about what's going on yet. They are having fun with Grandma, friends and family and we don't want to worry them yet. It will be easier to tell them if we can say she's better. And we aren't there yet.

Tom is going to stay here through Wednesday, at least. We both want to be by her side when she's able to wake up.

Forgot to mention that we went out on a bike ride this morning. They have these bike share things where you can get a bike from any station and return it to any station. We went through the park. It is amazing how I can feel almost normal for a second. Tom is really good at distracting me and making me laugh, even when I just want to cry. Plus, the sunshine, fresh air and exercise is so rejuvenating.

Lastly, we are truly overwhelmed with all the love and support we are getting. I just can't get over how many people care about her and us. Lynda posted on Facebook that We Heart Harlie & Friends has already raised a lot of money to help us pay for some of our expenses. Our community has already been so generous. The words "thank you" always seem so inadequate.

As much as we love Boston Children's Hospital, it is shocking that they don't have a better set up for families who are from out of town. The Ronald McDonald house is for cancer patients only. And the two houses they have here have been completely booked every time. I completed an application, and they put us on the waiting list. So, we'll see.

Anyway, for now we got the medical rate at our hotel and they threw in free breakfast, so that's cool.

Okay, it's getting late and we need to eat. Thank you, truly. We could not survive this life without you.

Much love,
Christy xo

Post-op Day 4

Yesterday, (post-op day 3) was rough. I had not slept at all the previous night and being tired on top of being sad is not a good combination. And I just couldn't write.

Although I had been really good and was keeping myself together fine, until the anesthesiologist who intubated Harlie for the surgery came to visit. She just has that personality and really sweet face that makes you comfortable. Plus, Harlie's nurse was so sweet and compassionate, too. As the three of us were talking, I asked her how long it took to intubate her under perfect conditions (she was well and breathing on her own). She said minutes, and that she got lucky.  Somehow the realization that she is going to remain trached for the foreseeable future hit me, and I started to cry. Once I started, I had a very hard time stopping. Then Harlie's pediatrician called her nurse to check on her. Seriously, how sweet is that? Her nurse gave me the phone so I could talk to her. Once I heard Dr. Sutherland's voice, which is also very sweet, I started to cry again. I couldn't talk to my mom, my sister, or any of my friends because I knew I would cry. And I had to keep it together as much as I could.

There is so much going on here, medically, and it is hard to be able to comfort myself thinking/hoping that this trach is temporary. The fact is that no one knows. It's way too early to tell. Let me try to explain...

The ENT who trached her and Dr. Padwa said that she should never be intubated again. They felt that she would need to be trached preemptively for every surgery from here on out.

I think I might have mentioned in a previous post that Dr. Resnick had to remove one centimeter of bone from her jaw.  My first thought was is that going to affect her airway. We worked so hard to make that jaw longer, and now it will be one centimeter shorter. I remember talking about adding millimeters. And one centimeter means taking away ten millimeters! That's a lot!!  Anyway, he said that it was up near her ear, so he didn't feel it would affect her airway.

Also, she's had a lot of lung issues and pneumonia. And I've never seen her go downhill so fast. Plus, I noticed that when they look at her chest xrays, no one has a major reaction. What I'm trying to say is that what we know about her lungs didn't match how bad she was doing (in my opinion). So, I can't help but be fearful that there is/are additional factors contributing to her decompensation.

So I asked Dr. Padwa about the centimeter Dr. Resnick removed. She apparently went home and thought about it. Because when she came to visit last night, she said she always listens to moms, because they are usually right. And then she said that maybe it did affect her airway negatively. Maybe her clearance was smaller than we knew. And this just tipped her over.

So, to summarize, this is what we know:

1. She has a very small airway as it is. She also has congenital cervical spine fusion. This makes it impossible for them to put her head back enough to get a better angle when trying to intubate.

2. Her airway itself is irritated, swollen and bloody from the intubation tube, jaw surgery and tooth extraction.

3. Her lungs have atelectasis (collapsed) and most likely she aspirated blood.

4. The centimeter removed may or may not have affected her airway structure (meaning the jaw bone, not the trachea itself) causing an upper airway obstruction (like she had for most of her life), causing her to struggle to breathe.

So, we have to wait until we can start to eliminate some of these issues to see where she settles. The problem is that if I think about #4, I know what that means. It means more jaw surgery before decannulation. And it makes me think about how she's going to talk. We don't know yet what kind of airway she has. Air has to be able to get past the trach, go through her vocal cords and out her mouth for her to be able to talk. An upper airway obstruction makes that much more difficult, if not impossible. We have to be patient till we find out the answers to so many very important questions. And that's so damn hard.

As to how she's doing now, she is under general anesthesia so she can't move on her own.

They gave her a PICC line yesterday. She only had one IV, and since she MUST get sedation meds, it was too risky to not have another access point (what if they lost her IV and they couldn't give her meds?).

Her lungs are still hurting, but what they would normally do to help the progress and get rid of secretions (chest pt, her coughing) they can't do because of her freshly placed trach. So, she just has to stay on course with antibiotics, oxygen and ventilation until her first trach change.

Her first trach change is Wednesday, I believe. After she gets that change, they will let her wake up.

She spiked a fever today, so they added an additional antibiotic.

They have not been able to restart her feeds. Her body just isn't ready for that. It's just so crazy because she has had virtually nothing since Monday night.

Since she is under, plastics is stretching her jaw for us. They are using a clamp that they use in the operating room. They put it in and stretch her jaw for 15 minutes, twice a day. They are giving her a bolus pain med prior to, because her blood pressure indicated that she was in pain when they did it the first time.

During the first time, they noticed that she has a loose tooth that bleeds when it is touched on the bottom of her mouth. Its a permanent tooth and I'm guessing its unstable because they removed the one next to it. Regardless, I almost lost my stuff when I found out. It is one of the bottom four teeth that the surgeon said didn't have a lot of bone under them. I just can't. It was about to be the straw that broke my back. But when plastics came by I asked him about it and he said it would heal and likely be fine. They are trying not to put the clamp on that tooth. Ugh. This whole thing is killing me.

I don't think I mentioned that Tom flew in late last night. We spent the morning at the hospital and left early afternoon. Maggie's boyfriend (Noah) met us out and the four of us hung out and walked around. Then we got dinner.

After Tom and I got back to the hotel, I called to check on Harlie. The nurse said Harlie had a busy evening and she was about to call me. What?!

Her blood pressures are just too low. They started dopamine, but apparently that's not working for her, so they are going to start epi or something. She can't be moved because her blood pressures drop. She spiked another fever. Her stomach is not doing well, and a lot of blood and stuff are still venting out of her gtube, so giving her Tylenol isn't working. So they are trying a cooling blanket.

She said a bunch of other medical stuff, but I can't remember it all enough to explain it.

The fact is that she is really struggling and my stomach hurts thinking about it. Having a medically fragile child gives you an introduction to a whole new world that most never even know exists. I have met so many moms who have children with rare, complicated medical conditions. I've watched so many of them suffer through surgeries, hospitalizations and many sicknesses. And I've watched many lose their children. Its awful. Its heartbreaking. But it happens.

So I KNOW there are NO guarantees. I know that every time we take her into surgery. I HOPE more than anything that she will bounce back. But I don't KNOW. So, I'm scared. She's very sick and she has a lot going on. None of this was expected. And I'm having a hard time with it all. And I miss HER.

Look at her just a few weeks ago.

And this is her now.

Hopefully they can get on top of that fever and she will settle tonight. I'm sorry this can't be more positive. I'm looking for it, I promise.  We just aren't there right now.

Thank you so much for the love and support. I know this isn't easy for you, either.