Getting Aggressive

Today was a day of little change. It was similar to yesterday in her activity, pain, chest tube output, and xray. Nothing is worse, but persistent. Our surgeon rounded this evening and we had a little consult with him explaining what the next approach would be. We worked really hard at being no/low fat the past few day. When I say low fat, I mean 1 gram of fat for the day. He told us this am to go no fat. I called the dietician. I didn't know the fat content of a few things and the menu has very few no fat options. The dietitian believed it nearly impossible. Cream of wheat has 0.25 fat grams per serving...and she only eats about 1/3 of it. The fruit cup has 0.28 fat. The fat free ranch dressing for her carrot sticks has 0.48 fat grams in the whole packet. Her drainage was on track to still be 200ml in 24 hours. Dr. Fortuna (our most awesome surgeon) said we need to keep her NPO=nothing by mouth for a day or more to get the fluids accumulation in her lung to stop. I think he planned on doing it tomorrow, but as we were talking we all decided to start her at that moment. She had a sucker in her hand and I asked who was going to take that from her... :( super sad face! He agreed, out of sheer sympathy to allow her to have suckers and ice chips. But even that will have its affect on her fluid production. Lymph drainage is a crazy, complex thing. So tonight began the begging for a drink and to eat. She asked for a drink and tomatoes! Tomatoes! We have spent days encouraging her to eat and now all we say is not now! This is going to be incredibly tough. I'm too exhausted to even think past tomorrow right now...if it works then "this" and if it doesn't, then "this." We are going to be in here a while. But Bill kept repeating, "we are going to get through this." And we will! This is a problem that is complicated to fix, but it is not life-threatening. For that we are so thankful. Bill knows all kinds of kids that have poor outcomes and he was just going over in his head all those bad scenarios and how that is not Mahaela's situation. We thank God! She is a strong little girl with a fighter, feisty personality. She will get through this. Thank you all for your prayers, encouragement, and scripture. We need it. I have ICU brain. There is much time, but my brain can't do much else than think about how she is doing. I feel completely distracted, scatter brained, unable to make decisions, just completely indecisive. I guess it's the effect of my focus being mostly on Mahaela or pulled to what I should/would/could be doing for my other kids. They are having to fight through all of this also and it's not easy for them. The night slips away quickly, so I am going to sleep...

It was a wind out of my sails kind of day!

Mahaela had an unpleasant day. She suffered with the pain of her chest tube. They sedated her this am to pull it out a few centimeters to see if the end of the tube would cause less irritation to her lung. It didn't seem to have any immediate effect. Her pain waxed and waned throughout the day and she required some good narcotics to give her brief periods of pain relief. She did walk today and that was a sight to behold--head bent sharply to her right shoulder because of the pain in that shoulder/chest and completely bent at the waist holding our hands as we walk backwards and she shuffles forward. It was pretty awful. For the last two days, she has sat in the chair quite a bit, but has only gotten in one walk each day. She should be walking more, but both days we all agree that she is just too exhausted to make the second walk. This afternoon, they injected her chest tube with numbing medication to see if that would relieve the pain. I'm not convinced that helped too much either. This evening they started her on an IV med (that she was also on after surgery) that has some analgesic and sedative properties. They say in small doses that it just takes the edge off without sedating them. At the dose she is at, she seems fairly sedated. It is now 12:30 am and she has been sleeping since 7 pm. She crashed immediately after eating and getting back into bed. She has been eating fairly well today. She is on a low/no fat diet. She is to eat as little fat as possible--1-5 grams/day. That is really difficult for anyone to do...let alone a child! It is difficult to eat enough calories with a no fat diet, so they started her on TPN through her IV. It is nutrition supplement, IV. There is something going on with her lung that is not that unheard of, but on the rarer side--Chylothorax. It is difficult to explain, but her lymph system in her chest has a duct that is clogged or traumatized from the surgery in some way and it is dumping this high fat drainage into her lung. That is why she had so much drainage last evening and throughout today. So they try to control it by giving Lasix to get rid of any extra fluids and limiting her intake of fat. She will be no fat for about 6 weeks. They hope these things together will make the drainage slow enough to pull the tube. I think her tube put out about 200+ ml of fluid this past day. At this flow rate, the tube must stay...and will stay until the drainage stops. Bill read that a range that these kids have chest tubes is 8-42 days...no one is speculating anymore. Our nurse today said she would be in the hospital another week, at least (at least!!!!). That's when I completely deflated! As Bill reminded me tonight that we have the tools to deal and cope with this. God has given us those tools and we are in for the long haul. The Lord is with us and holding us up and He is healing Mahaela in His time. Maybe we are here to share her story to a few more people. I love the opportunity to share more of the wonderful story of how God gave her to us and what a miracle she is in our lives. We are so blessed.

Praying for Healing

Tonight Mahaela cried out in pain as if she had been stabbed in the chest. Her chest tube had just started draining more in a few moments than it had drained in a few days total. It must have shifted where the chest tube was positioned in her chest. It was so sudden and severe. I had that completely helpless feeling. I couldn't take away her pain fast enough. She hadn't slept since very early in the morning, so she was exhausted. Once the pain subsided enough after Motrin, Benadryl, and a narcotic, she finally fell asleep. Grandma and Grandpa Kincaid were there and as mom said, it just confirms that she is still a little girl recovering from a major surgery--she is still sick. And that she still needs prayer. Earlier today she walked and rode her bike, so she did have great moments today. She started her day off with this same severe pain and we had to wait for the drugs to kick in. The unfortunate thing was that her chest xray looked worse than yesterday with more build up of fluid on the right side, so the chest tube did not get pulled. Now the tube is draining a lot and will most probably not get pulled tomorrow either. As her surgeon said today, she is acting like a Fontan patient (Fontan is the name of the procedure) and viewed as a Fontan patient and not on the fast track. In other words...these issues happen with Fontans and we shouldn't really expect different from Mahaela (although everyone was hopeful in the beginning that she was on the fast track to discharge, without complications.) Mahaela needs prayer for rest, tolerance for exercise, decreased drainage from chest tube and improved/normal chest xray. Her nurses are all so sweet. She is wowing them all with her personality...you just can't help but love her...I'm so proud of her and amazed by her ability to connect with so many people. As one of her nurses said, "You can't help but smile when you walk in her room."

Making Improvements

This is not the chubby little cherub face that I am used to seeing! (her hair has french braids that one of the nurses did for her. Reminds me of some hairdos that they would do in Bulgaria on her)

Mahaela is making some improvements. Her chest xray looked better this am, so she did not need another chest tube put into her left lung. The right one is barely draining, so we are hoping the worst of that problem is over. They will leave the chest tube for a couple days to make sure. She ate a bit today and took some fluids. We really tried to get her to drink and she did ok.

Everything else is looking good on her and they continue to wean her off the oxygen. She is still on the high flow nasal cannula, but they are decreasing it slowly. Tonight she is speaking and interacting with others more.

The kids visited tonight and Lindsey thought she looked scary. Aubrey thought she looked better than last night. We are praying that she does not develop any more lung issues and no infections. She wants to go home with the kids and ride her new big wheel that they bought her tonight. She's gonna love it.

Here she is getting her hair "washed" in the special shampoo cap. She didn't care for it too much!

A few photos from Thursday 3/31

Yep, her world is turned sideways for a little bit...

But soon she'll be back to squinty smiles! These were a couple photos from yesterday...she always attempts to flash a smile for the camera. She would not have been able to give this smile today. The kids couldn't believe how different she looks--definitely not our chunky-monkey girl! (and, by the way, I don't know why the photo turns or how to correct it??)

A Chest Tube

After about 36 hours of decline in Mahaela's breathing, they inserted a chest tube on her right side. She was just listless today. Nothing could make her smile or even talk. She was just exhausted and lousy feeling. I kept saying she just looked completely depressed.
After a good try with the lasix and getting a lot of fluid out of her, her xray looked even worse this am. So this afternoon she had a chest tube inserted that drained out 370 ml (1000 ml=1 liter). That is a lot of fluid in the right chest of a little girl!
She was sedated and had the tube inserted right at her bedside. She did ok, with one scary looking spell--blue, o2 sats in the 40s, not breathing, needed her airway opened, got bagged. It was quick, and she came around quickly. She is in such good hands, I just wasn't worried (yet.) Daddy was right there to help her and I was holding her foot, praying for my little sweetie. She woke up after a while with pain and was given morphine--a big dose, according to Bill. So she is still sleeping. Her breathing has slowed a lot--to near normal at the moment, and her o2 sat is up--but she is on high flow oxygen still. She had an echo earlier to make sure that none of her symptoms were cardiac related and it looked good.

We are praying that she continues to improve as she is able to get rid of this fluid around her right lung. I am praying that the left side improves or we will do the same again tomorrow with a left chest tube.
She is being amazing as far as being so patient and brave. She looks so sad which is just heartbreaking. She is very dehydrated (on purpose to get rid of fluids) which makes her eyes very sunken looking. Just a day ago she was all puffy, swollen face, with sausage fingers and toes.
I am so grateful for all our friends and family who are holding her up in prayer. One thing I know for sure is that Jesus is with her. Jesus has my little girl in His big, loving hands...and I am not afraid.

A Little Setback

Mahaela has had a day of difficulty breathing. It is one of the expected complications with the type of surgery that was done. M. has fluid in her lungs. Her lungs have to get used to this extra fluid load with her new re-route of circulation to her lungs. They are trying some diuretics to get the fluid off. She is on high flow oxygen to keep her oxygen level up. They will put in more drainage tubes tomorrow if the meds don't get rid of the extra fluid.
On a good note...she did sit up in the chair this am. She ate a great breakfast and was in a good mood. The doctors were playing jokes on people with a "fart" machine that is remote control. They hid it under her sheets when they saw daddy coming and then it tooted when he walked in the room. He was so happy congratulating M. for good toots. M. was blaming them on daddy. It went back and forth for 3-4 toots while we were all laughing and M. and daddy kept blaming each other...and it's not even April Fool's day yet!

By lunch M. was feeling lousy and we even made her walk in the hall. It was torture, she hated it, and cried the whole time. I bet she totally can't understand why she had to walk to nowhere and daddy wouldn't even pick her up. She was up much of the day and has been napping off and on since 3pm. She just looks depressed!
In spite of it all, she is being so sweet, giving smiles to visitors, and of course a few "I'm gonna getcha's" to the staff and family.

We keep praying for small improvements throughout the next day and beyond.

(By the way, she wants MOMMY to lay with her and she wants to be covered with the BLANKIE that I crocheted for her--this might be the turning point for me.)

The Lord's MERCIES are new every morning...I'm counting on it!