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