Post-Op Visit - One week out from discharge.

Hewitt saw his thoracic surgeon today, Dr. Ranne, and he is doing well! He got his “stickers” off…AKA his bandages. Everything is healing appropriately. Harry came for moral support. He LOVES to go ANYWHERE, even the doctor!! Hewitt….not so much! His voice is still very weak and often sounds like he is hoarse and/or whispering a bit. He said that can take up to 3 months to go back to normal and it is likely form the intubation. And my guess maybe partly because he didn’t talk for over a week while in the hospital and really minimal talking the week before because he didn't feel well. He is about 75% back to normal. His energy is still lower and by the end of the day he semi-falls apart. It seems to cause him pain when I lay him flat on a hard surface to change his diaper. He has only been able to take partial baths because we weren't able to get the left side wet....SO......we had to wash his hair in the sink, which he hated, and then get in the bath to wash everything else. He doesn't understand...you MUST wash your hair! He mainly wants me because I think he is afraid that someone else will pick him up wrong and not know how not to hurt him. SO he still guards his "owie" when doing activity. Poor friend! He is getting stronger everyday and his sleeping routine has gone back to normal for the most part! THANK YOU LORD!!!!! We are still on oral antibiotics. He is such a trooper. When I told him we were going to the doctor today he started crying saying, "I want to stay right here, right here. No bye bye." Harry is simultaneously saying, "I go bye bye, I go doctor". I explained to Hewitt that there would be no owies, but the doctor had to take his "stickers" off so he could get better. So by the time we were on our way he was saying, "I get my stickers off, get better." 

-"CHEESE"

-Never at the same time!

-Harry prefers to be the patient.....so he thinks! 

I have talked to him in very plain terms because our children understand SO much more than we give them credit for and I think when we try to shield them, distract them, or sugar coat it too much it actually has the opposite effect and cause anxiety and mistrust. Of course, he still cried A LOT in the hospital, but he learned that I was telling him what was happening and why and I can tell it has really helped him. For example, his Augmentin taste terrible and he hates it. They were actually worried at the hospital that he may not take it because kids hate the taste. I said, "Oh he will take it". He fought me everyday in the beginning and I kindly explained that he had three choices, either he took it on his own, I held him down, or he had to go back and get shots everyday. You choice. He chose to take it every time as long as I had something nearby to wash it down with. Smart kid. BUT today....he took it without a word and actually said, "i get better". YAY!!! 

So grateful for life, modern medicine, antibiotics, anesthetics, Motrin, IV’s, our TOP notch hospitals…..So many things we take for granted on a daily basis. #blessedbythelittlethings 

-Might have panicked when I turned around and they were playing with doctor office toys, BUT you could smell the disinfectant and I drilled the lady about their cleanliness level....she said no one has played with them in a week!" 

😳😝👊🏼

-Then we stopped by my old office and they put Mickey stickers everywhere!

Last Days in Hospital, Prognosis, and Coming Home!

Day 6, 7, and Coming Home!! 

DAY 6: The chest tubes were taken out on Monday and that is where my last post left off. Tuesday(DAY 6) we were moved out of the PICU and on to the regular pediatric floor where I would have my own bed! YAY!! BUT....it didn't matter because he wouldn't sleep unless I was in the bed with him. He had a lot of pain at night and I think it is worse because he goes will start to deep breath while sleeping and that causes significant pain. Enough pain to where he SHOOTS up out of bed and is flinging around. It is quite upsetting to see. He does it every night. Pleuritic pain is sharp and quite alarming as an adult, but worse as a child because you can't understand what is happening or how to stop it. This was about the only time during the day I would panic because it would appear as though something was REALLY wrong, even though you knew logically what was likely happening.

Overall, he did well. Started walking the halls. Pooping again. Riding in the wagon and talking to me with some smiles. He hadn't really talked the whole time. His little voice was so hoarse and weak it was happy and sad to hear him talk. He still very much guarded is left side and only really wanted me to move him. He had really gotten to the point that if a nurse walked in he started losing it. :-(

-Right before we blew this joint!!!

DAY 7: Discharge day. Hewitt had been seeing four different doctors during his admission. The Pediatric Intensivist, the Pediatric Thoracic Surgeon, his Pediatrician, and the Pediatric Pulmonologist. Hewitt will have several weeks of recovery and we will not know until the chest x-ray in 6 weeks if he will have any permanent lung damage. Either way, the doctors informed us that we needed to be EXTRA careful with him because his lungs have taken a big hit. Basically, they scared me to death and that is actually hard to do. The first hit they took was last fall when he had a severe asthma attack, but of course this one being much worse. He isn't allowed to be around groups of kids of any kind for at least the next 6-8 weeks. Church, big play dates, parties, etc. Sick season is still going on and his left lung has zero resistance right now. Not going to lie, it was pretty hard to hear because it reminded me just how serious this infection was. NOT that I didn't know, but it is hard to hear as a parent when it is your job to protect them and even though these things happen, you still feel like you should have known so you could protect him.

He went home with a central line in his left subclavian vein and he went home with this because he would still require 5 days of IV antibiotics at home. They actually wanted 7 more days, but the central line had to come out in 5 so agreed on 5 because the risk of infection from central line was much greater. In these types of cases they said you need something stronger so make for certain the infection resolves. You also want your child to be discharged form hospital as soon as safely possible because we all know that everyone at the hospital is sick. Central lines must be protected and monitored because they are at higher risk of infection and have a direct entrance into the heart which can lead to septicemia. I was a little freaked out even with my medical background. There is a reason why you don't treat your own family members in serious situations. 

-Hewitt's line was on the left. 

SINCE COMING HOME: We came home Wednesday at noon. he got to nap in his own bed. It was so sad because he usually sleeps in my room because I cant risk them waking each other up at nap. Mommy NEEDS a break!! BUT.....all he kept saying was, "my bed, my bed, my bed". So we let them sleep together and they both passed out happy! I would want my bed too. The lack of sleep that occurs, it is a wonder anyone can get better. I had to become the sleep NAZI and be very proactive about when and how often they came in at night. Obviously, they have to come in and do things, but you can request then to cluster or postpone something for an hour or two. Kids need sleep!!!! 

-Suffering from a bad case of BED HEAD!!! One of the first things we did...wash hair! 

Home health was to come the next day(Thursday) to administer IV Rocephin. This was a VERY hard day. ACTUALLY one of the hardest. Sounds crazy, when she came to give the medicine(Thursday) BOTH lines were had clotted off which means that no medication could go in. I LOST it. I didn't know what was going to happen. A million scenarios went through my head and none were good. Would we have to readmit him, place another line, not get IV antibiotics that he needed??? Would we have to be readmitted just for them to try to clot bust the line? This takes hours and what if it didn't work? One line had already clotted off twice in the hospital. I just couldn't imagine putting him through anything else, but also know he needed something stronger than oral medications. He had finally taken a real nap and he really needed sleep. SO....we called his pediatrician and she had us come up there and she actually removed the central line. 

We weighed all the options and re-admitting him put him in more danger than benefit. We decided to give him the same medication in a shot everyday. IM(intramuscular) Rocephin and IV Rocephin have the same absorption rate but the shot is obviously painful and feels just plain mean. BUT we didn't have a choice so we have taken him to get two shots everyday since Thursday and then he will start oral Augmentin on Sunday through Friday. We see the surgeon again on Thursday to look at he incision site. He did have another chest x-ray on Thursday and it actually looked a little better than the one the day before. There is still a portion of his upper left lung that has not expanded, but this takes time.  This is a huge source of his pain. This type of pleuritic, visceral pain HURTS!!! This was a very emotional day for me and I was a little scared. I don't like to deviate form the original plan, but I trust our pediatrician. She explained everything in detail and we went over the pros and cons and since the absorption is the same we decided this was the best and safest route. 

-Chest X-ray one day after discharge. 

He has done better and better each day he has been at home. His voice is getting stronger and his appetite has improved significantly. He has been asking for pizza everyday which is so funny because they never eat pizza at home, only when we go out. He has only had a low grade temp twice. He is still not sleeping all the way through the night like he did, but considering the sleep disturbance he has gone through he is doing great. I am still up a lot, but he is doing better. My boys have been sleep trained and have had the same schedule for their entire life, so I know in a short amount of time he will fall back into it. It is a balancing act on my part because when he cries I want to go in and often do, but I also have to know when it is good for him to realize this is bedtime and he needs his sleep. The other night he cried and I had already been in there two hours before to give him medicine for actual pain and when I walked in and picked him up he started talking like we were going to play or something. He kind of gave himself away. Back to bed buddy. He's only on Motrin and Tylenol as needed for pain. Kids are so resilient. He definitely looks thinner, especially in his face. I really noticed when I looked back at some photos taken just the week before. His coloring is still a little grey. 

He should make a full recovery without any restrictions and for this I am grateful. He could have a little scarring or damage from the infection but we are praying for none! 

WE want to THANK everyone of you who prayed, messaged, posted, visited, and called. I have ready EVERY word and it meant more than you will ever know. We were COMPLETELY overwhelmed(in a great way) that so many people cared about us and our precious little boy. I never could have imagined the out pouring of love onto our family. It was INCREDIBLE and something I will never forget. Thank you Sarah Greer, Melissa Whitley, and Trier Donahue for the GREAT toys!!!! Both Hew and Harry LOVE them all!!!! <3 I am grateful that I now know what people go through when their little one is so sick, and it will greatly help me to know what to do, or say, when this happens to others I know.

When Hewitt crosses your mind, please pray for his left lung and that there is no damage left after his infection has completely resolved. Thank you!!!! 

-YAY!!!! Broly is home!!!!!!

-HARRY is SO happy to have his BFF back!!!! He said this was hard on him too! <3

Chest Tubes are OUT!!! Day 5 PICU!!!

Today(Monday) has been our best day so far. The chest tubes were removed this morning without any complications. He didn't really sleep the night before because of pain and because Norco has the opposite effect on my kids.....it keeps them awake! YAY!! I held his hand while the tubes were being removed. They sedated him which I was very grateful. However, even though you know that he is 100% ok, and going to wake back up in a few minutes, it was still one of the harder things to watch because he looked catatonic or dead, but with his eyes open. So upsetting. It made me cry.....actually I could have balled, but I knew he could still see me and I didn't want him to be scared. My sister said it so perfectly, "it is like your eyes are telling you one thing and your heart another." It was a very simple procedure done at his bedside, but so weird to see your child like that with his fixed gaze and pinpoint pupils. As he came off the sedation(katamine) he would start trying to say mommy, but only "ma" would come out. Little angel! I have never had a child in the hospital and now I have much more sympathy and understanding! So that is good!

He was like a different kid once those tubes were out. He started talking to me in his little hoarse voice. He started actually eating and drinking more. We did an Easter Egg hunt and rode in the little red wagon. He didn't want to get out of that wagon so he ate dinner in it and watched Mickey Mouse in that wagon. He smiled a lot today and laughed a lot today. I love when he says, "lay down mommy" as he points to the spot beside him bed. Or when he insist I hold BOTH his hands every time a nurse walks in or someone touches him. They are so surprised at how well he is recovering!!!!


We got some pretty good smiles in this thing!



He was still very guarded because of his "owie". He wakes up often confused and will stand up abruptly screaming and pulling at his chest. Talk about an adrenaline rush and not the fun kind. I saw incisions for the first time today. He has two separate tubes in his chest and also a two inch incision from his thoracotomy. Thoracotomy is an incision made in the chest so the surgeon can have access to the lungs. He had to have this because the infection was so severe they had to scrape the lungs and pull out the pus, dead tissue, and infections so that the normal, healthy lung could expand again. When a pneumonia causes an empyema(infection of the pleural space) antibiotics cannot reach this area and surgical debridement is almost always necessary. It was this process that cause the collapsed lung and he was breathing only with his right lung, but not anymore!!!


This hospital stay has made me think about all the sick children out there and how their parents must feel. My child is going to recover completely and go back to his normal life. There is a light at the end of our tunnel. I have thought about what it must feel like to have a little child with a terminal disease. One that you know they will in all likelihood never cure or recover from. I CANNOT imagine holding Hewitt knowing that he may not make it to his 3rd birthday. I CANNOT imagine him having a disease that is long term. So, I am grateful for our pneumonia because it has a cure. If you are reading this post and you have a child with a terminal disease, life long disease, or a child that has passed....know that I have thought of you often and have prayed for your breaking heart!

Day 4 of PICU!

Saturday night through Sunday night.  

This is going to be a lot MORE detail than anyone of you likely want to know, but I am documenting for my memory sake! Hewitt has been in a lot of pain because of the two chest tubes. It hurts every time he moves or coughs. He also had lots of severe pain today(Sunday) because as the fluid moves out the ling can keep expanding and this can be very painful. He actually pointed to his mid chest instead of the chest tube site today when referring to his "owie". :-( Friday and Saturday night sleeping was worse than the first night. Partly because he is more aware and we have had to move more during the day. If you come near him he starts to tense up because he wonders if you are going to move him or stick him! He has continued to be on narcotics, but we moved from morphine to Norco with Motrin. If you are in scrubs, he immediately doesn't want to be your friend! LOL!! We walked again today and everyday time he does he gets a little faster. Partly, because I think he wants to get back in the bed. Yesterday when we made him walk he also had to step on the scale to weigh, so today when he walked he "hurried" and did the same lap around the hall and stepped on the scale even though he didn't have to weigh. I think he thought that was the routine and the faster he did the routine the faster he could sit down. It as sad and funny. I have stayed every night, but last night I stayed until 4am and Rocky relieved me, so I got to get 4 hours of straight sleep early Sunday am at home. WHAT A DREAM!!!

He has talked very little and has three phrases he says often......"mommy", "owie", and "NO".  I miss seeing him smile and talk. We bought our first portable movie device and he watched Mickey Mouse with his best friend Harry and I know that makes him feel better, even though you can't really tell. I told Harry to pray for brother's left lung so now when you prompt him with the word "left" he says, "Broly left lung feel better".

We will likely get the chest tubes out tomorrow(Monday) which is a great sign. To get the tubes out you have to have less than 30cc of fluid coming out of the chest tubes in 24 hours! YAY!! It has slowly trended down. Part of the disease process from an empyema(infection in and of the pleural space that surrounds the lung) is a distended abdomen. On top of that he hadn't gone the bathroom in 4 days. I knew he was really miserable so we gave him a suppository. I regretted giving this to him before bed because he was up all night in pain because it forced his bowels to start moving the hard stool, which was very was painful. BUT.....he had a MAJOR blowout.....MAJOR.....so at least he must feel better after that! He saved that for when his daddy got here. DARN...I missed it! LOL!!

OVERALL.....the doctors say that he has progressed really well and fast considering how sick he was. I think they are surprised. I am not.....Hew is very strong!! 

On another note, please be praying for another patient here in the PICU. He is 6-10 weeks old(not sure of age) and has no family that I have seen in 5 days. I have overheard a couple things, but I won't share publicly. I plan on talking to the social worker today.  I would love to help him in whatever way we can! I know it is probably a long shot to take him home, but if that is God's will it will be. Even if it were to hold him and love him for just a short bit until he has a home again. NO newborn baby should ever be without LOVE or someone to hold him. He hasn't had anyone holding him since I got here, except the nurses interaction. He is so precious. I want to go squeeze him!! Please pray for him and his future! 

SO....as I sit with a Hewitt, even when he was so critical, I am reminded to be grateful for two things specifically. First, to be grateful that we will near modern medicine. How many children in this world have ZERO access to life saving procedures and medication. Hewitt would be dead without them. We take this for granted everyday. We are so blessed. How many mothers sit and hold their sick, dying child with zero hope? It is happening everyday all around the world. Dying form infections and disease we cure every minute of everyday. How many of us complain about what other cultures would die to have?? Guilty. I am so thankful to live in this great country(even with all our flaws)!! Even on our worst of days, it is FAR greater than the majority of the world. Be THANKFUL!!! Second, I am grateful that my boys have parents that love and hug them everyday. We may be sick right now, but Hewitt has never known a day without love, hugs, and kisses. Thankful that I never went without someone to hold me. We know that physical touch is a necessity of life. Pray for that baby. 

Watching Mickey on "my computor".

Our FAVE nurse!!! She is so precious and is fostering twin girls with Cystic Fibrosis!

So GREAT to see him smile, even if for only a minute!!! Melted my heart!