Yesterday was plain awful

It has been a crazy 48 hr. I can’t even write about it too much because I am to tired and I get to angry by reliving it all… let me start with: We came home on Friday, Levi went from barely being able to sit up in a hospital bed to 5 minutes after being home, he was running and playing. I had to clean around his trach and at the hospital it was a three person job because he would get so angry and upset. It took me two seconds and he was fine. He has done SOOOO much better since coming home. The drama began yesterday morning when we found that his feeding tube was out. We aren’t really sure exactly at what time he pulled it but after trying to get him to drink some milk, we decided to go to the emergency room to have them put it back in. Well, that is when the nightmare began. After 7 hours and two failed attempts to get the tube in the right spot, they realized that they were shoving all the tubing in and it was all coiled right were his stent is… where he JUST had surgery. Their solution was to send him to the adult ER to have radiology try to put it in. When I said I wasn’t going to wait another 7 hours for that they wanted to re-admit him into the hospital to get an IV… I explained that he was able to drink plenty of water and I could give him pedia-light . I had promised Levi after the second time that they did the nose tube and we were getting an x-ray, that we were done. Several nurses have told me how incredibly painful it is to have one, and for him with a freshly cut airway and a stent stuck in his throat and a week like he had had… well, it was awful. I seriously cannot remember the last time I was quite as furious as I was yesterday. I was being treated like an irresponsible idiot. I knew that it was not necessary to stay at the hospital, I’m so glad that I didn’t allow it because once he got home, he was able to eat a little bit and he continued drinking plenty of liquids. The Doctor on call spoke with Brian and shared her concerns, and tonight another Doctor called to check on him. While we were in the ER, Brian spoke with the ENT that did the surgery and he was pretty upset about the fact that they had put the tube in the wrong way twice. He pretty much said to just make sure that he wasn’t dehydrated.
I am so tired and overwhelmed, thankful that Levi is doing so well and he is so happy. But putting him through what we did yesterday just really pushed me over the edge. He is healing, playing, being silly, active and energetic. He can’t talk and he does have a hard time swallowing. But every day he gets better at it. I’m giving him protein powder, mineral supplements, multi-vitamin, vitamin C, herbal vitamin, very fattening coconut milk… I hate that I feel like I have to defend what I’m doing for my son and I really hate it when people act like they know what’s best and I’m just a crazy mom… really rubs me the wrong way! So, now I need to take deep breaths and rest… I will try not to lose it tomorrow at the pediatricians office, I don’t think I will, I really like her… I know that after reading this you all will be praying for us, thank you!

Next steps

Okay, today Levi passed his swallow test, thank you Lord!!! He still isn't really drinking. It's a combination of fear, pain and just weirdness that keeps him from wanting to. But he can and we are thankful. The doctor came by and was explaining how because there is a stent in his swollen airway, there are still several things that can go wrong. As the swelling goes down, it is not uncommon for kids to start aspirating (food going into lungs when swallowing). The stent will stay for two weeks, it's in his new airway, so he still can not breathe without his trach. Even after they pull that out, there still may have to be several other little surgerys to remove scaring from the surgery. It probably will be months before he is trach free. But, when the stent comes out, things should be much better. It's a slow process, hopefully the hardest part is behind us... We're pretty tired, all of us!
Jesse has a infection in his ear and is still couphing some. He wants us all home but is doing so good with all the craziness! Levi needs to start eating for us to go home without a tube in his nose. He also needs to sit up, he's moving in his bed better, but he will not sit up. He won't speak a single word eather. I miss my healthy, energetic, smart Alec boy so much! Brian and I are good, tired of constantly rotating between hospital and home, jesse and Levi... But God is good!

Levi had a good day yesterday; he was even a little bit silly when I first got there! They were unable to take the drain tube out from his neck though; they may try again this morning. At around noon, we got him out of bed and cleaned him up a bit. He was so, so scared to move and cried when we did this. But after a while he settled and took a long nap on me. It’s been hard to move him, even the slightest change pushes him over the edge. The main problem he’s having is that he is very jumpy in his sleep. He will be sound asleep and all of a sudden have that falling feeling and get so scared! Sometimes he is able to just go back to sleep if we apply pressure to him, but we have to be right there. He did this all day but Brian said that he did a little bit better during the night. They had given him more pain medicine to try and help with this but it didn’t, instead it made him super itchy all over  At like 9 last night they tried some anxiety medicine.
Well, even though I got to come home last night I didn’t get to sleep. Jesse-boo coughed nonstop all night long. Somebody at some point today will be taking him to the pediatrician this morning. Brenda and Leland are at the hospital to relieve Brian and to hold my stop so that I didn’t have to rush Jesse. Thank you for your continued prayers… please keep them coming!

I got to come home as sleep last again. I just talked to Brian and he said that Levi was a little more like himself staring at like at 3 am. Yesterday he was so, so sad. I only saw three little smiles all day. He gets so sad anytime anyone touches him, other than family. It kills me to see fear in his eyes. Yesterday morning they pulled out his chest tube and this morning they will pull the one on his neck (drain tube). I hope I’m not there for that! Tuesday will be a very big day, they will take him down to the OR and scope him to see how things are healing. Then they will take him to radiology to have a suck-swallow test to see if he can start eating. In the OR they will do a trache change and they said that it’s a big deal… I’m not really sure why. One of the Doctors said that he may have temporarily lost his ability to swallow because of the tube that is inside his airway, it is partly on his vocal cords, so they can not close up when he swallows. So he would aspirate into his lungs. I PRAY and ask that you all will as well that it is not the case with Levi. He is so, so sad and I feel like if he can have water when he asks it would make him happier. Otherwise I’m not sure what will happen, they did mention us having to go home with the feeding tube that is in his nose. I can’t imagine having to keep all food and liquids away from Levi, I mean, Brian and I can drink and eat when he can’t see us, but Jesse? Anyway, we will cross that bridge when we get to it.
Brian took Jesse to see Levi last night. I was worried about Jesse and thought that it would make Levi happy to see brother. Well, Jesse did really well. He had millions of questions about everything and wanted to bring Levi home and didn’t understand why Levi wasn’t talking and playing. As we were leaving he informed me that when he was a tiny little baby he had to sleep in a hospital bed and it made him a little nervous. He said that he thought we should just bring Levi with us…
I’m going to keep this short since I haven’t written an update in Spanish, thank you all for your prayers. We love you all!

From my moms update

"Sorrowful, yet always rejoicing" (2 Corinthians 6:10).

Sorrow was beautiful, but his beauty was the beauty of the moonlight shining through the leafy branches of the trees in the woods. His gentle light made little pools of silver here and there on the soft green moss of the forest floor. And when he sang, his song was like the low, sweet calls of the nightingale, and in his eyes was the un-expectant gaze of someone who has ceased to look for coming gladness. He could weep in tender sympathy with those who weep, but to rejoice with those who rejoice was unknown to him.

Joy was beautiful, too, but hers was the radiant beauty of a summer morning. Her eyes still held the happy laughter of childhood, and her hair glistened with the sunshine's kiss. When she sang, her voice soared upward like a skylark's, and her steps were the march of a conqueror who has never known defeat. She could rejoice with anyone who rejoices, but to weep with those who weep was unknown to her.

Sorrow longingly said, "We can never be united as one. " "No, never," responded Joy, with eyes misting as she spoke, "for my path lies through the sunlit meadows, the sweetest roses bloom when I arrive, and songbirds await my coming to sing their most joyous melodies."

"Yes, my path, said Sorrow, turning slowly away, "leads through the dark forest, and moon-flowers, which open only at night, will fill my hands. Yet the sweetest of all earthly songs--the love song of the night--will be mine. So farewell, dear Joy, farewell."

Yet even as Sorrow spoke, he and Joy became aware of someone standing beside them. In spite of the dim light, they sensed a kingly Presence, and suddenly a great and holy awe overwhelmed them. They then sank to their knees before Him.

"I see Him as the King of Joy," whispered Sorrow, "for on His head are many crowns, and the nail-prints in His hands and feet are the scars of a great victory. And before Him all my sorrow is melting away into deathless love and gladness. I now give myself to Him forever."

"No, Sorrow," said Joy softly, "for I see Him as the King of Sorrow, and the crown on His head is a crown of thorns, and the nail-prints in His hands and feet are the scars of terrible agony. I also give myself to Him forever, for sorrow with Him must be sweeter than any joy I have ever known."

"Then we are one in Him," they cried in gladness, "for no one but He could unite Joy and Sorrow." Therefore they walked hand in hand into the world, to follow Him through storms and sunshine, through winter's severe cold and the warmth of summer's gladness, and to be "sorrowful, yet always rejoicing."

Hello everyone, yesterday afternoon Brian came to the hospital to replace me. I went to pick up Jesse who by the way, is doing great! He has been having a wonderful time thanks to BeBe, Mister, his aunts and some of our friends. It is such a burden lifted off of us to know that he is very well taken care of. We went to eat, came home, took a shower and went straight to bed. I called Brian right before and he said that it had gotten kinda rough right after I left. Dr. Wootten, the surgeon stopped by to check on Levi’s draining tubes. He wasn’t able to check the chest tube because the neck one sent him way over the edge. But after that he finally fell asleep and the nurse said that she was going to let him rest for the night. Such a good thing because every time they mess with him, he gets so upset and it’s hard to calm him down.
Thursday was a very long day, we got there at 10:30 and they took us back pretty soon after. Everything seemed to be moving a long perfectly, we spoke to the Doctor and signed tons of paper work and then we waited, and waited and waited. It was scheduled to start at 12:30 but the OR room was occupied until 2:30! That part was hard because you prepare yourself for so much time and we were so tired. I, by the grace of God, held it together long enough for Levi to be out of sight. Once the surgery started, the time went by fast. They were great about updating us every hour, really all they said was “he’s doing great! Call you in a hour”. Great words to hear when your baby is in surgery. It was done before 8 and before 9 pm, we were with him in the PICU… very, very unprepared from that point on. We thought he was going to be completely sedated that night but instead we got there and he was kicking and crying. Kinda how he is after his scopes. Only this time, he had a very, very swore throat, two drain tubes, two iv’s, leads all over, I was not able to pick him up and rock him, he was thirsty but can drink nothing… it was awful to say the least. I can’t even write about it without getting light headed. That night he was very upset, every time he wanted something and I had to say no, he would cover his face with his blankie and cry. He was a little more resolved all day yesterday.
Well, I have to go, Jesse is on my lap and its very hard to type! Thank you all so very much for the encouraging words and prayers. We love you!

Thank you all so much for your prayers and words of encouragement. The Surgery was a little over 4 hr, when the Doctor came out he had a big smile. He said everything went perfect. He used part of his rib to graft his airway open. We thought that he was going to be completely cedaded tonight, so we were not prepared to find him how we did. For about an hour he was very miserable. And it's so hard because he keeps signing what he wants and everytime I tell him no, he covers his face with his blanky and cries. He's calmer now but still frustrated and in pain. Thank you so much for your prayers

Jesse-boo and the rest of us

So, I felt the need to try and explain to the boys as best I could (or should I say, in a way that they could understand) about the process and what is getting ready to happen. Levi is very excited about getting his trache out! Every time we talk about it, he adds ‘and I’m going to swim like Nemo!’ He is having a hard time with the Doctor part though. He’s always been so, so good with Doctors but I have been unable to convince him that Doctors are nice… he keeps saying that he doesn’t like Doctors and he wanted Miss Jennifer(his physical therapist) to do the surgery instead because, he says he does like her. Anyway, I realized that I needed to back off because in my need to prepare them, I was making them anxious.
Jesse is having a harder time with all this. He’s a lot like Brian and doesn’t do well with change. He likes his ‘whole family a lot’(is what he always says) and he doesn’t like it when I say that Levi will be at the hospital and he will be with BeBe and Mister… he keeps saying that he needs to be at the hospital too because he needs surgery and healing also. Like I said before, in preparing them he got really anxious. So now that I’ve baked of, I’m realizing that there are some things that they as well as us, will have to deal with as it comes. I know that Jesse will be okay. He will be surrounded by people that he loves and I’m confident that they will follow my instructions to not worry about discipline and go ahead and spoil him as much as they want… I NEED THAT! I have such peace in knowing that he will be happy and well taken care of. It’s hard to have two that are so, so close and literally do everything together! Jesse will not be able to visit until Levi is out of the PICU(pediatric Intensive Care Unit) and he most likely will be there for the majority of the time. Of course, I don’t really think I would want him to see him in that state.
And the rest of us? Well, we’re good! Brian has been incredibly busy at work. He really enjoys it and does such an amazing job. He gets so much time to listen to great speakers and awesome worship music (IPod) so he’s ready! He has so much Faith, and he is still praying/believing for a miracle. He will have to work some this week, but hopefully he can spend the night every other night with Levi and that way I could get some sleep (maybe!) and stay with Jesse. We are so thankful for all of you that are offering to help and lifting our arms up… your prayers and encouragement mean so much to us! It’s truly humbling to know that so many are burdened for our sons and family. I’ve been kinda all over the place! These last couple of days I have felt the need to clean… really, really clean! I know it’s probably going to be a very exhausting week and if and when I do come home, I want to be able to rest and just focus on Jess. The week before we had the privilege of seeing some of my favorite coworkers, the Stearns and be encouraged by them. Before that, when the boys were sick, I had lots of battles to fight in my mind and spirit and even from the moment that we found out that he was going to be having surgery… it’s just been crazy! But God is faithful and I believe with all my heart that He truly prepares us for battle, as much as we can take that is. I can see that like my babies, I can only handle so much at a time. We are praising HIM for what HE has already done and is about to do and for what HE will continue to do. Suffering is Gods language… I wouldn’t have chosen to learn this, but I am thankful that HIS Grace is there. I also can see how we are so, SO blessed! And compared to what other people that we know and love, this really is nothing! And we are resting in that Gods got our back. May His will be done in our lives and may we glorify HIM through it all… and to you all, you are a part of this too! Thank you for walking with us… Love

It's actually happening!!!

I can’t believe I’m actually writing this (and at the same time I can’t believe I’ve waited till now to write it!). I imagine that most of you already know this… for the few of you that don’t, I do apologize! I’ve had such a mixture of emotions that kinda come like waves… maybe that’s why I couldn’t sit down and write? Anyway, in two days Levi is having major airway reconstructive surgery… yes… two days…. For three and a half years we have waited for this, sometimes patiently and sometimes not so patiently. We have hoped for it, believed for it and now, it’s happening in two days!
About three weeks ago, Brian got back from a mission trip to the Dominican Republic and brought back lots of great stories and also a bad cold… that you gave to Jesse and yup, you guessed right, Levi got it too. I trusted that God was in control and He is good always, but I would be lying if I said I wasn’t a little nervous at times. Well, it was more like panicked! It didn’t help my battle that I didn’t sleep for an entire week, mostly because of Jesse, Levi was only bad for a couple of days and then he bounced right back.
Most likely they are going to take part of his rib and graft is airway open, place a tube inside to keep it all open and allow it to heal for about two weeks. When they take this tube out, we will know if the surgery was a success or not… if it doesn’t collapse it was a success, if it does he needs to do it all over again. If everything goes perfectly smooth, it’s a week at the hospital at least. He will keep his trache for the entire healing process that hopefully won’t be more than two months. After the surgery, he gets scoped kinda like before about every two weeks for about three months. My friend Stephanie’s son, Braden had this surgery back in October and that is where I’m basing this information from. Everything went perfect with them, and I do realize that it could be very different for us, also the surgeon has explained that he could change his mind during surgery and decide to do a different one. Like instead of opening his airway, he could cut and remove the entire section that is scared. That would be a longer stay at the hospital but overall, he would have his trache out sooner. Anyway, we are prepared for whatever road God has set before us.
We are so honored and humbled to be lifted up by so many… we truly are grateful that we don’t walk this road alone. I can’t wait to celebrate with you all! It was been a long trial. God has definitely been so good and faithful and we realize that it is only by His Grace and Mercy that Levi has done as well as he has. Imagining our lives without this artificial airway brings me to tears! And although I would love to skip this process, I realize that God has a purpose in everything that we go through. We WILL keep you all updated! Thank you so much for your support, encouragement and prayers, may the LORD be glorified!!!