Tuesday, November 30, 2010

Day 30

I don't have too many changes to report today, which is a good thing I suppose... He hasn't thrown up at all since I posted yesterday, so we're still excited about that. The numbers they use to measure pancreas function are getting higher every day, so we're pretty certain that pancreatitis is the culprit. There are conflicting views on whether or not to feed through it, so the doctors are playing conservative and only giving him 2 cc's an hour of breastmilk. So far, he seems to be tolerating that amount pretty well, and we'll see how he does with larger amounts tomorrow. They are concerned about the numbers, but since a "treatment" doesn't exist, we just have to wait it out.

They've kept most of his medications the same- just a few small changes- and they gave him another blood transfusion today. He didn't have as bad a reaction as last time, but that's probably thanks to the Benadryl they gave him with the blood. They've been doing CPAP trials with his vent all day, and will continue trying to lower the settings... If all goes well with that, they're going to attempt extubation in the morning. We have no idea how that's going to go, since he's failed extubation twice already, but we do have to give him the chance and see how his heart reacts. The biggest issue is going to be the pressures... With the vent he has positive pressure going to his lungs, and once we take the vent away, fluid may back up again. This is our chance to see if he'll be able to make it to a transplant without vent support, or if he'll have to stay on the vent indefinitely. I'm praying for the first option!!

Monday, November 29, 2010

Day 29

We had another roller coaster day, but things are looking fairly stable right now. The cultures from his belly drain haven't come back yet, but when they looked at it yesterday, it looked "suspicious for infection"... The white blood cell count in the sample was really high, so they went ahead and started him on antibiotics. Today, the fluid coming out is a little clearer, so hopefully the antibiotics will do the trick without any other interventions. He hasn't thrown up since late yesterday afternoon... They stopped his feeds after starting the antibiotics, so that we wouldn't have to worry about him losing them while puking and blowing up his diaper. The doctors think he has pancreatitis, and that's what is causing his digestive issues. He had an ultrasound done yesterday, but they weren't able to see the pancreas very well with all of the gas in his bowels... They'll try again today to see if we can get a better look and confirm. There's no real "treatment" for it, besides rest and time... Stopping his feeds was a good call, and if his pancreas is the problem, we'll have to be really careful when we start them back up again. Otherwise, he's doing pretty well today. They'll continue to lower his vent settings, and hope to try him off the vent for a little while at the end of the week. Even if he doesn't last long off the vent, it will give them a better idea of what's going on in his heart without the vent helping out. Hopefully, the rest of the week will be uneventful, and he can continue to rest and heal in peace. I'll keep posting updates as we get them, and thank you all for the continued prayers.

Sunday, November 28, 2010

Day 28

The past 24 hours have been a roller coaster of sorts, with all of the ups and downs... I'll start with the ups first. I met the girls at the mall yesterday for lunch, and then we had a really good time shopping for their Christmas presents. (I know we jumped the gun a little bit, since it's not even December yet, but already have some Christmas money burning a hole in their pockets. :) I had fun, and I loved spending time with my two favorite girls, but I can't say it was really a relaxing kind of day... Post-Thanksgiving shoppers are vicious, and most of our time was spent getting out of the way. I'll have to remember this experience next year, so we don't make the same mistake again. It broke my heart to say goodbye, since I know I won't see them again until Christmas... I was so sad to see them go. It's always hard to send them back to their Dad's house.

We had some visitors from Emory yesterday evening when I got back to the hospital... They picked up some prescriptions for me at our pharmacy, and then bought us dinner. Thank you Jason, Amy, Tracy and Rachel! :) My cousin Becky had also come to visit during the day... I didn't know she was going to be here, and I'm so sorry I missed her. She brought a bag of goodies and a really sweet card... Thank you too Becky! We have been so incredibly blessed by all of our family and friends...

Now the downs... (My weak-stomached friends should stop here, as most of the details are disgusting. I try to clean it up a bit for retelling, but it's still pretty gross.) Trent kept telling me that everything was fine when I called to check in yesterday, but when I got here he told me he had lied... It was a rough day. Holden has been throwing up green bile (massive amounts of it too) for the past two days. We're not really sure what's causing it, but they're trying different medications to get the bile production down. We think he either has a stomach ulcer, too much bile- since his feeds are going straight to his intestines, nothing is passing through his belly, or maybe a bug? I don't know, but I hope they figure it out quickly... This poor baby has enough to deal with without puking added to the mix. Another concern is at the other end... He had to take some meds to help his bowels move before, and now they're really moving. The problem with that is that one of his blood pressure/heart medications is going through his NG tube, and since he's pooping it all out, we're having trouble regulating his blood pressure. We can compensate for that by giving him a different med through his IV, which we are, but there's no way to know how much of the medications he's actually retaining. We're trying our best to switch him to all oral meds so we can get IV's out of him... Every line going in him is another infection risk- Little things that make a big difference.

He's also been running a fever off and on since yesterday. The drain in his belly started draining a milky looking fluid this morning, which is different from the clear fluid he's been putting out. We don't know if it's a problem with lipids maybe leaking, or if something's infected in there. They've sent out cultures, and hopefully we'll get that figured out soon too. We're praying hard for NO infections... He's still too weak to fight anything off, and a serious infection could affect his ability to get a transplant. It will also set us back as far as his vent support goes... We need to be trying our best to wean the vent settings and at least try extubating him, so that we can more clearly see what happens in his heart without the vent. We're nowhere near that point yet, but working towards it... We need him to stay well!

Thank you all for the supportive comments and messages... I'm still surprised by how many people are keeping up with and praying for our little boy. I don't even know a lot of you, but your support and prayers are ALL appreciated. Thank you!

Friday, November 26, 2010

Day 26

It's been a busy couple of days up here... My girls were here for about an hour yesterday, on their way to my aunt's house for Thanksgiving, and they got to return today on their way back today. Even though the time was short, I loved being able to see them. I think they did really well, and they handled seeing Holden better than most adults do. They both cried a little bit when they saw him for the first time yesterday, but today he was a little more alert, and they got to see him open his eyes a little bit. They wanted to see him smile, but I think he's saving those smiles for when we get that tube out of his throat. (I wouldn't be smiling either, honestly.)

Holden had a pretty stable day yesterday, but today he's had a few changes. Most exciting of all (I think), he got his foley catheter out. It may not seem like that big of a deal, but it should be a huge bump in his comfort level. His vent has been weaned down a little bit more, so he's now on a PEEP of 5 with his FiO2 at 30%. That's a huge improvement over last week, and he seems to be handling it fairly well. They're playing around with his blood pressure and heart meds, and his sedation. He seemed to be handling that pretty well too, until he started throwing up... Evidently, he's grown fond of his narcotics, and was going through a little bit of withdrawl. We had to give him a little bit back, and he seems happy again. (I use the word "happy" loosely here... If he's asleep and not twitching or thrashing, we assume he's happy. I really hope we're right!) He went for his CT scan this morning... Nothing is wrong with his brain, but they have to do it as part of the pre-transplant workup. The neurologists came in after his scan, and wanted us to stop all of his meds for about three hours tomorrow morning so they could do a full evaluation... We told the nice doctors that was NOT happening. He doesn't respond to big changes well at all, and we're not taking the chance. (One of his doctors is making a sign for his bed here that says, "Don't rock my boat. Seriously.") Luckily, his regular doctors agreed with us, and we won't have to worry about any drug-related backslides. Then later, as he was getting his dressings changed, we noticed that one of his sutures holding a central line in his groin had popped. He had to get that stitched back up as well. All of these little things add up for him, and he's had a rough day. Right now, his sats and numbers are all holding steady, except for his CVP... That number can't seem to decide what it wants to be, which worries all of us. Hopefully, he'll have a better (read: calmer) night!

Tomorrow, I'm planning on taking my girls shopping for a little while, and I'm a little torn. I don't feel like I can be away from here very long, but I also can't stand the thought of the girls being right here, and me not getting to spend all the time I can with them. I think it will be good for all of us... I need to get out of the hospital for a little while every now and then, and being with my crazy girls does good things for my heart. :) I'll be praying for a calm morning, so I can actually make this happen!

I'll post a few pictures I took, even though I'm sure the girls would rather I didn't. :) Holden's pictures don't change much day to day, but he looked so handsome after his bath last night I had to capture the moment...

Thursday, November 25, 2010

Day 25- Thanksgiving

They took Holden for his heart cath yesterday around 5pm. It took a little less than three hours, and they brought him back close to 8pm... Everything went well, and there were no complications. The doctor had some good news for us... His pulmonary pressures look good for a transplant. I was really worried about that, since I have been doing a lot of my own research online. (The doctors here have tried to ban my laptop and internet, but so far they haven't been successful.) I found one site that said if his pulmonary pressures weren't right, he wouldn't be a transplant candidate, as the new heart would have trouble working against the pressure. Well, his are fine, and will be compatible with his new heart! All of the surgeons and cardiologists working on him last night were shocked by how much the numbers have changed since his last cath... I got a little excited when they were telling us this, thinking just maybe he wouldn't have to get a transplant after all, if his heart started working on its own. No luck with that... The pressures have improved, but are still more than double those of a normal kid's heart. So, that just means we haven't gotten our miracle... Yet. :)

They lowered his pacemaker rate to 100, and messed around with the AV delay a little bit. It won't make a huge difference, but every little bit helps make him more comfortable. He's still doing well keeping the fluid off... We're ecstatic about that, as it improves everything for him in here. The only problem with the fluid going out instead of being kept in his body is that we're chasing his potassium levels. They get really low when he has so much output, causing the heart to become more irritable. That's a problem easily fixed though, and we'll take that problem over the others!

My girls are coming up here today to see us, and to see Holden for the first time since he's been here. I am excited beyond belief to see them, but I'm scared of their reaction when they see how he looks in here. I don't know if there are any words to really describe how terrifying all of the tubes and wires are when you see them hooked into a baby for the first time. So, please make sure to say a prayer for all three of my kiddos today... For Holden's healing and comfort, and for the girls' peace after they spend some time up here.

It helps me tremendously to remember how much I have to be thankful for while we spend our days here... Not just today, on Thanksgiving, but every day.

This year, I am thankful for all three of my beautiful children- My girls are bright and intelligent, and they both have such kind, giving hearts. I am so proud of the little ladies they have grown up to be. My little man is a fighter, and has already shown such courage... I can't wait to see what kind of man he'll grow up to be.

I am thankful for the nurses and doctors at Children's Medical Center. We've bonded with some more than others, of course, but all of them are amazing people with huge hearts. They truly care about these kids, and that's reflected in their work.

I am thankful for our family and friends- old and new. Our support network grows each day, and we appreciate all of you so much. We are incredibly blessed!

I am thankful for Facebook, because without it, I'd never be able to keep up with that support network.

I am thankful for the Starbucks in the hospital (even though they close on the weekends, and are closed today through Monday). Sometimes, the shot of caffeine is the only thing that keeps us going.

I am thankful for my husband, who has been by my side on every step of this journey.

I am thankful for the power of prayer. I've lost count of how many times we've almost lost our little boy in the past month, and I truly believe that prayers have kept him here. We have been blessed beyond measure, and we are eternally grateful.

Happy Thanksgiving!

Wednesday, November 24, 2010


I've been going back and forth on the decision to post pictures, but I think today's improvement calls for pictures... Look at the difference between today and last week! I know it looks bad either way, but he's not nearly as swollen and shiny today. A small victory, but I'll take it!!

 And today, after draining the fluid. He looks so much better! I can almost see my sweet baby in there now!

Day 24

We're on day 24 of our journey here at Children's Medical Center... Time passes by in an entirely different way in the CICU. The days seem exceedingly long and slow, but they pass so quickly that I can look up and not know where the hours went. It's such a strange feeling, but common in the ICU, I would guess. Right now, we're waiting for them to take Holden to the cath lab. He should have been in an hour or two ago, but the procedure before his is taking a little longer. They haven't moved as quickly on today's part of the process, so I'm no longer expecting to get him listed as a transplant candidate by the end of the day... Now we can just hope it's done by the end of the week. He still has to have so many tests, scans, labs, etc done... The neurologist should be in sometime today as well, but we haven't seen anyone yet. We "passed" all of the interviews and meetings yesterday, and we're ready to get this show on the road. After draining all the fluid off of him yesterday, he looks like a completely different kid today. He's looked like a bloated bullfrog for the past few weeks, and it's oddly relieving to see him looking like my baby again, even with all of his tubes. He was negative on his fluids by 1200 for the past 24 hours... That is over a liter of fluid! Now that his kidneys aren't under so much pressure, they've started working again, and he's peeing like crazy too. Liquid gold, as it's known around here. :) His kidney numbers are looking better today, which is good news for listing him. His BUN is at 36 (down from 59), and his creatinine is at 0.6 (down from 0.9). He seems to be a little more comfortable too, which makes me really happy. It broke my heart watching him suffer day in and day out, and not be able to do anything to take the pain away. That's one thing I'm thankful for this week. Another thing I'm thankful for is the outpouring of love and support we've received from friends, family and even strangers. I can't say this enough... We are immeasurably thankful for every single prayer. I am horrible about responding to individual people... I try, but I never seem to have enough time. Regardless, we appreciate each and every one of you who pray for and support my tough little man.

Well, Susan (the transplant coordinator) just came in here and told us that she's putting him on the list right now. So it's official... I'm not sure if I'm happy or terrified, but I'm holding fast to the belief that everything will happen at the right time for him. As someone recently said to me, "God is in the miracle business." I like that. :)