Home and Feeling Great

Walking out the door and going home.

In the Riley Wagon, on his way out.

Dance! Dance!

Eating any solids he wants!

We got to take Jamie home on Thursday the 18th, and got home late in the day. Jamie did so well! He rode in the car and was a happy boy. He slept for a while, played by himself for a while, and I played with him for a while, so the 2.5 hour drive went by pretty quickly. He got a little fussy in the last 10 minutes or so, but I was able to distract him until we got home. He had a messy one, so it's not surprising he was cranky. Then he went to sleep without fussing. Amazing.



Since we've been home he's been a new boy. He's calmer and happier and not so fussy. He likes to snuggle now. We can sit with him on the couch, just holding him, and he is happy. Before, he'd just have a fit if we weren't walking him around or at least bouncing him while sitting. And he goes to sleep for naps and bedtime without having a fit. I rock him and out he goes. No crying! Nothing! And then when he wakes up he plays by himself for a while until we hear him and get him, and he's not upset. Before, he'd always wake up from naps crying piteously. Only in the mornings would he wake up happy. It's just amazing. He has a lot more attention for play now. He will amuse himself with his books and toys for up to an hour now! Before you'd be lucky to get a half hour. He also wants me a lot more. He loves his Mama. I hold him and he's totally calm.

It seems like before I could hold him and it would help, but he'd still be miserable. I thought and had been told that he was just a fussy baby, a "high needs baby". The truth was that he was in pain because his innards were jumbled. But you know what's the strangest part? I had wondered if everything was "where it should be" inside his torso. I even asked the doctor once at his 6 month check up, and she said yeah. She had no reason to think anything so rare was going on with him, and it's pretty hard to diagnose without a chest x-ray, so I can't blame her for not finding it. But it's so weird that I just kept wondering that since he was born. I mean, seriously, who questions whether or not their child's organs are in the right places? He sometimes had breathing problems, but the doc said he was healthy and that it was probably a virus or allergies or something like that. I just chalked it up to being a paranoid first time mother. That's what I've always heard about mothers who constantly question about the things their child is doing, and I didn't want to be unreasonable. FORGET THAT! From now on, I will absolutely trust my own instincts. I will trust my mother's instinct.

Oh, and he still is a feisty boy. He is still my child, after all. ;)

Off Tubes and Feeling Fine

On Saturday we got a room in the Ronald McDonald House. Since I'd slept with Jamie Thursday and Friday (while Michael slept in another room in the hospital) and didn't get more than a few hours each night, Michael insisted I sleep in the RMH that night. After that we switched off. Jamie had some bleeding through his NG tube. They say that happens when it's on continuous suction because it'll grab part of the stomach sometimes and cause it to bleed.



On Sunday, his pain was a lot better. He still had to have his meds on time, the morphine every 3 hours and the Tordal every 8. He was a bit more awake, but seemed unhappy and bored. I it occurred to me to play with him, and he played a little. It made him very very happy. And the nurse brought him a stacked rings toy that lights up when you up the rings on the pole (whatever that thing is called). He didn't smile or laugh, but he was happier. Respiration Therapy puts him to sleep and makes his coughs more productive. He had another bleed in his NG tube. I just hate that. Blood should stay in the body. Oh, and he tried to pull out his NG tube. I don't know what came over me, but the moment I saw him grabbing it, and it was out about an inch or so,I just pushed it back in. And then I wondered, "what was I thinking?" I just shoved a tube back in his body, and did I hit anything? Well the nurse came and checked it out and it was fine. And the doctor said the next day that that's all they would've done, and I should sign up for nursing school. :) We went to mass at one of the chapels and the priest was wonderful! He gave a moving sermon about looking to the cross (or crucifix) and giving up our burdens to God and looking at it not as a sign of suffering (as in Jesus' Suffering, or a symbol of our own suffering) but as a sign of Victory. It's a sign of Jesus' Victory over death, Victory over Sin, and it's a sign of our victory over death and sin and suffering and faith in God. It was something I needed to hear.




On Monday, he smiled! The priest who gave the sermon on Sunday came over and performed the Sacrement of Healing on Jamie. In case you're wondering, it's not "Last Rites", it's for anyone in need of healing. Just because it's also given as the last of all the rites doesn't make it only for the dying. He played a bit more, and during one such time, he looked over at the crib toy and smiled briefly. Such a beautiful sight! Later in the day, he even tried to laugh. He was allowed to have water in small amounts, and managed it no problem. He got a fever late at night and they gave him a Tylenol suppository which took care of it. They also did blood work to see if he had an infection either locally or generally. (The preliminary cultures came back today and so far nothing. The doctor, Karen West who is just fantastic, said it's likely a hormonal response to his labored shallow breathing.) He was also able to go up to 4 hours sometimes before needing his meds. His x-ray came back looking pretty good. His heart had moved over into pretty much the center of his chest. The left side is still thickened, but it looks healthy, as do the lungs. They continued with the Respiration Therapy every 6 hours, which he really enjoyed and his lungs continued to get clearer. He still mostly refused to cough because it hurt to much.



Yesterday, they took out his NG tube early in the morning, and he started playing with Michael right away. Around noon they took out his chest tube. And we got to hold him! It was the first time since I handed him to the surgical nurse for surgery, and it was wonderful! It was an even happier moment than when I held him after he was born. And he tried to stand up and move around, and was much more active and alert and didn't cry every time he moved or was moved. And with those tubes out, we didn't have to make him wear those no-nose arm guards to keep him from trying to pull out the NG tube. And I put a new sleeper on him. Much better than the hospital gown! He had more x-rays, before and after they pulled the chest tube, and everything looked good. No noticeable improvement over the previous day's x-rays, but he still looks good. The lungs looked inflated.

Today, he went as long as 9.5 hours between morphine doses! He's having a much better time with the pain, but now that he can move around and we can hold him and play with him more he gets a little sore from it. They also said he could have soft food, starting slow. He's tolerated it pretty well. The doctor said they might send him home tomorrow! Seriously! Tomorrow! We are a happy family. :) He's also back to flirting with people. It's been several months since he did that! Happy happy day!

Update 1:15pm Sat. 12 Sept.

He is more awake now since the anesthesia has worn off completely, but he still mostly just sleeps. He's having some trouble breathing so Respiratory is going to come down to give him some sort of treatment with percussion something or other. Yesterday they had to adjust his morphine dose so he could get it more often. Every time it wears off he gets pretty upset and wakes up. This morning he started trying to cry, but that hurt him, so he just whimpered. It was time for more morphine. They're also going to add Tordal (anti-inflammatory non-steroidal pain med like ibuprofen) which should really make him feel better. He had more x-rays and his heart hasn't moved over toward the center like it should, and his good lung isn't fully expanded yet, and the other lung is still partially collapsed. This morning is when he started having some more trouble breathing, which is why they're calling in Respiratory for some treatment. They said it would make him cry, which is what they want so that he'll cough this junk out of his lungs and dislodge other gunk. The nurse brought in a crib toy that plays music, much like the one he has at home. I gave him his blanket, put it in his fingers, and he grasped it and went back to sleep.

A Mother's Worst Fears Become Reality

So here is my Darling Boy. He had the stomach flu and just didn't stop vomiting. So I took him into the pediatrician and saw a new woman (only appointment we could get, but she is seriously awesome I may switch to her permanently), and she recommended admitting him for IV fluids. He was so dehydrated that it took 7 tries (7 TRIES!) to get the IV in. During the 6th try they were holding his arms and legs down but one of the nurses had her arm close to his mouth and he reached up and bit her. BIT HER! He decided that if the only part he could control and use to defend himself, then by God he was going to use it! Such a spunky boy! Thankfully it didn't break the skin. They took a chest x-ray. After asking about it, they finally said the doctor would come in to discuss it with us. The x-ray showed he had a Congenital Diaphragmatic Hernia on the right side. From birth there has been a whole in his diaphragm and his abdominal organs have been able to travel into his chest. It is a life threatening condition that is caused by a congenital defect which develops during the 7th to 10th weeks of gestation and survival is 80% with modern medicine. (Which means there's a 20% mortality rate, don't think I didn't see that!) What happens is that two "flaps" of the diaphragm don't grow together properly, leaving a hole, usually on the left side. This is often found during ultrasounds or diagnosed within days of birth. With Jamie, his ultrasounds looked normal, and he was very healthy and growing normally until recently and so there was no suspicion of a defect. They think that when he got the stomach flu, the pressure of vomiting pushed the organs up farther making it obvious in x-ray. Anyway, they then flew him to Riley Children's Hospital in Indianapolis by MedFlight helicopter so they could have time to stabilize him for surgery. We followed him by car, arriving 3 hours after he did. Surgery began at 8am and by 11am they had finished. So that was the faster end of the spectrum. I don't think I've ever cried to hard from relief in my entire life. Mama and Michael had to tell people I was crying happy tears. I guess I sounded rather devastated, which I was just from the whole "I could lose him" fear. They had no complications, no bleeding issues (no transfusion), the organs looked pretty good, the lungs looked better than expected, the diaphragm had enough of it's own tissue that they were able to just sew it up with adding anything to cover the hole. The liver, colon, lower intestine, part of the upper intestine, part of the stomach, and part of one kidney were all in the chest cavity. The lung that was compressed the most was partially collapsed. I don't know how much of it was working vs. filled with fluid. The chest tube is still in and the fluid is draining out. There is a bruise on the lower intestine, but it didn't look bad enough to remove, so the doctor just left it to see if it will repair on it's own. After the surgery, the lungs and heart had moved to fill 75% of the chest cavity, which is apparently super wonderful since sometimes the "squish" is permanent. His lungs don't seem to be underdeveloped, which is again amazing given the condition. They are giving him calories via the central line to help him gain weight and stay strong since he already lost weight and hadn't eaten in so long. Okay, he'd eaten, he'd just not digested. Small difference, I know. He is now on morphine every 3 hours. Every 4 was too far apart. His fluid output isn't matching input, which is probably him building up some lost fluids. His urine looks much better than before surgery, but it's still a bit cloudy, so we'll see what the doc says here soon. A lot of people have been praying for my darling, so please continue praying. I know it's greedy of me, but I still want as many miracles for his recovery as I can get. He is a brave wonderful strong courageous boy. We need him.