Homeward Bound

Daylight came, finally. Last night was long for me but peaceful for Lane. My mind kept going to dark and scary places with the whole low platelet issue. The blood was drawn, the numbers came back and they were up slightly. Thank you God! Dr. Reiderer came in (again with the computer) and said that he was fine with us going home. Still couldn't really explain it but most importantly he didn't think it was any kind of cancer. No need for anymore tests this time. We are to keep a log of Lane's temp for a week or so. I asked at what temp to bring him back and he said to base it on Lane's appearance as well as temp. Low temp, looks good, stay and try to warm him. Low temp, looks bad, bring him in. This goes back to the 1st thing Dr. Walsh taught us in the NICU: watch the baby, not the numbers. Numbers have their place and tell us things we do need to know but so many times people get caught up in them that they forget to look at child. Lane's numbers are different but it's just the way he is. Praise God that Dr. Reiderer understands this or else we could be here indefinitely. We are back on the 4th floor after all ( they converted Pod A of the NICU to patient rooms).

So for now I'll eat my last box of Milk Duds, wait on my discharge papers and reflect on this go 'round. Decent nurses, great care partners and two of the best attending pediatricians we've had, the absolute greatest IV therapist ever ( a lady named Mercedes who got Lane on the very 1st try.) We WILL be requesting her again. A visit from Dr. Morgan, late one evening (more like 8:00 at night) just to see what was up, a long overdue visit from Sarah and lots of time to think back on the past 4 1/2 years. SO many memories on this floor. It's where our journey began in a sense. The place where my life changed so drastically so long ago. It was both strange and familiar to be back there. Passing by the 2 rooms we had during our Pod A stay was bittersweet. This whole journey is full of immense joy and unbelievable sadness, laughter and tears, darkness and light. but it's also brought many blessings and more than a few miracles. It's our life and I will cherish every moment.

Now What?

I thought I was through with surprises. Lane's done pretty good since the tummy perf in July. He had pneumonia in Feb. and we did 4 days in ICU but we've had pneumonia before. His temp was 93 and his sats were low which was different for Lane but still nothing too bad. Saturday he was so cold I couldn't even get his temp to register. 3 thermometers and 5 tries later I gave up and just concentrated on getting him warm. The weekend dragged by and by Monday afternoon his temp was 91.8. Well, we know where we're going. Our "diagnosis" of pneumonia wound up being wrong. They thought maybe his thyroid was causing the trouble and I still think it may be playing a part in some of the issues he has with heart rate, blood pressure, lethargy, temp. etc. For whatever reason this kind of got passed over. I couldn't understand why he could regulate his temp in the past and now all of a sudden he couldn't. A neurologist that had never seen Lane said that it could be his brain worsening. That thought was so sad to me. I accepted his brain damage long ago and though I know it will never get better I guess it never occured to me that it could get worse. How much worse, how soon and what happens then? I feared I already knew the answers to these questions. Did all those seizures cause more damage? They must have. They were so awful for so long. Now that they're not a daily part of our lives I don't worry constantly about what the long term effects are. I spent several hours trying to take all this in. Then Dr. Reiderer comes back and says that Dr. Sharpe (Lane's neurologist) didn't feel that the temperature issue had anything to do with his brain. Good, so I'm happy again. Now he wants more blood work. Still chasing that elusive infection that can cause such low temps in kids like Lane. Blood's drawn, test is done, time for another surprise. You know when the doc brings the computer in with him it can't be good. Apparently Lane's platelet count is low, very low and has been since the beginning. It can bring itself up and then drop again. Still, you think infection but since nothing's showing up you have to wonder what's causing it. Is it a blood disorder, or merely a "Lane Thing". We don't know yet. We do know that it earned us another night in here and another test in the morning. If the number is still low or has dropped even more and there is still no sign of infection from the other 2 tests that are pending, then an oncologist/hematologist may have to look at it. Yeah, that's one specialist I was hoping to avoid. Maybe we still can. This doc understands that Lane is different and that lots of things just can't be explained in our miracle mystery baby. It's been a long day and the night isn't going any faster. All I can do is wait and see what the morning brings. Hopefully something I want to hear. I guess life with Lane will always be full of surprises.

Another trip to Vandy but this time was different. This time it was Morgan. I told Will on the way that I was so tired of being afraid. He said at least that way I still knew I was alive. This is true. I guess I'd rather know fear and sorrow than to be numb to everything around me. That's kind of how I felt in July when Lane perfed the 2nd time, like it wasn't really happening. That was scary. Had I grown so accustomed to ambulance rides, ER's, surgeries, hospital stays and the fact that God could call Lane home any given day? Maybe it was God's way of helping me deal with the fact we were once again facing the very thing that altered the course of our lives forever when he 3 days old. The fear was there this past Sunday as Morgan battled a 104.1 fever and a very swollen neck. I watched again as one of my babies suffered through an IV. It took 4 people and 6 tries but they finally got it. It takes a toll on you after awhile. I'm tired of holding down a screaming baby while they're poked and prodded. She needed blood work and a CT scan with contrast. This revealed an abcess on one of her lymph nodes. I told Will as we pulled into the parking garage that worse case scenario would be IV antibiotics. Well, I was right about that but there was also a threat of surgery to drain it if the drugs didn't work. By the Grace of God they did work and we were released on Wednesday, with the oral version of the antibiotics she'd been taking and an appointment to go back to the ENT doctor in November.
We encountered many people we knew from our trips with Lane from the triage nurse to one of the ER docs, to our attending pediatrician, and one of the IV therapy guys. We were also taken back to the CT scan by the same guy who's carried Lane to radiology many times and even the guy doing the scan was the same one who did Lane's in July. Like Jean said we're on a 1st name basis with these people. Good? Bad? I don't know, but it's our life and I am learning every day to be grateful for it, as crazy as it is because it can be taken from you in an instant. Sometimes I still wish it were easier or different but then something scary happens and I find myself begging God to just let it go back to being "normal", our normal. I'm still a work in progress, still learning to be grateful, still learning to trust, still learning to be a better person. I've come a long way since October of '06 but the Lord is not finished with me yet. For my birthday Will gave me a picture that says "Choose you this day whom you will serve, as for me and my house, we will serve the Lord" Joshua 2:1-15 I wanted this as a reminder that God has carried us through the dark until we could see the light so often and that I need to serve Him at all times. I think that I still keep somewhat of an edge to me because I believe Lane Carter's purpose on this earth is to bring me (and others) to God and if I get to where I need to be Lane's work will be done and he will be called home. I've often wondered why, after all I've witnessed and learned, after all the grace and mercy I've been shown, why I still can't get it together. I think this is why. Maybe that's stupid but I have reached that conclusion. Maybe I just need help, maybe I'm crazy.
Morgan's stay was so very different from any of Lane's. We tried to make it an adventure for her. We took a trip to the playroom where, much to her delight, she found Legos she could actually play with! The princess found a castle she could go in with a little throne to sit on, and then found a dragon to pet. It was so cute to watch that sweet little hand reach out and pet a giant mosaic dragon. After all, doesn't every princess own a dragon? We fed her Ben & Jerry's ice cream 2 days in a row, showed her the butterfly garden, purchased a pig in the gift shop, visited the pharmacy and watched the trains. Strolled around the floor and downstairs, eating up all the attention she was getting.
I've always said I wanted her to be a nurse, maybe she just wanted a 1st hand look at what it was really like.
I read on my friend's blog that her dad reminded her that our kids are not our own, that they do in fact, belong to God and that He loves them even more than we do. This is true and we are LIVING proof that we have no idea what God's will is. So last Friday thru Wednesday, God had to gently remind me of this. That NO matter how crazy or hard or unfair you think your life might be, we must be grateful for the gifts in our lives, for the mercy we've been shown, the fact that God may let us hurt but he will NEVER abandon us and that we are all still a work in progress.
I am blessed beyond measure.

Maybe, Just Maybe...

We MIGHT go home tomorrow. I will believe it when I am handed discharge papers. So far today he has made it to his feeding goal, and seems to be tolerating it. His labs look good. they'll redraw them in the morning, hopefully nothing will have changed with any of his levels. Dr. Morgan came in and checked his wound. He is the best surgeon here, but I swear he forgot to close him up! I didn't know people could go around with that much of their tummy open. I know it's the top layer(s) of skin, but still. He felt that it looked good, like it was healing and with no sign of infection. I will now be learning to change a wet to dry dressing. Where's that honorary nursing degree? Lane has had some of the best blood pressures ever this go 'round. His vital signs continue to look good, little bit of a temp but I'm hoping it doesn't get out of hand. He's been pretty fussy at times today but finally settled down.
Debi came to visit us today. We were honored to have had her bring her camera and take some pictures of our little patient for her blog. There is a link to it on my facebook page. It was written with love and the pictures are great. I regret not having more pictures of Lane while we were in the NICU. I also wish I had started this back then. It would've been a great way to look back and see how far God has brought us. A way to remember and give thanks for the miracles we've seen. I know some people don't understand this, some would chose to forget but this journey has changed my life, for the better. There is healing in remembering, loss in forgeting.
I just changed my 1st dressing, and did alright with it. I'll get better with time. The 1st time Sarah made me change his ostomy bag was a joke. Before it was over I could almost change 'em in the dark. Lane humored me and was good during my attempt and now is sleeping peacefully. I think that sounds like a great idea. Good night all...

Our journey continues

So by the grace of God, Dr. Morgan is on call. He must be so tired of seeing Bill, Jean, Will & me in a waiting room. This makes the 6th time. He's done all but 2 of Lane's. Yes, you added correctly, he's had 8. Eight surgeries in 3 years and 7 mo, 2 of which were emergency due to a perforation. You have to question why an innocent child must endure all that he has had to. But back to the story at hand. I signed the consent forms and we went to the 3rd floor to wait. We were the only ones in there which was kind of weird. Of course it makes the 2nd time we've sat in there alone and that's not counting the 1st one back in Oct. of '06. Surgery started at 11:34 and by 1:45 or so Dr. Morgan was out talking to us. It went well and Lane remained stable throughout. He said he found a perforation in his stomach. I didn't know it could do that. It was about the size of a quarter and he didn't know why it happened. He said he didn't think the Baclofen pump was infected, which was a cause for concern earlier in the night. He also didn't find any more perforations in the intestines, even saying they looked remarkably good considering Lane's history. Dr. Morgan explained that he left the wound open so that it would heal with much less chance of infection that way. We are already battling an infection from the perf. we don't need the wound adding to our trouble. Said he would put him on medicine to control the acid in case an ulcer had caused all this. We thanked him again and told him to have a good trip. You see if this had happened Friday, Dr. Morgan would've been in North Carolina. God still has His hands on Lane.

Really?

I never thought I'd live part of my life twice but last Thursday I did just that. It wasn't exactly the same but eerily similar. Lane woke up at 3:00 screaming. We had a pretty rough night til 6:00 that morning. I thought well we're in for a bad day and went about my routine. I noticed his tummy was tight so I vented him but the tube looked fine. Throughout the day I could tell he was trying to throw up but with the Nissen he can't. Well I'll just give him Pedialyte for the rest of the night I thought. After the 4:00 feeding his shirt became soaked. Will thought his diaper had leaked but it was right over the Mic-key button. I sniffed it and said no, that's formula. I raised his shirt up to find the button protruding out of his tummy with lots of air escaping around it. "We need to change this" I said. Will vented him 1st and the tube overflowed. Will took the Mic-key button out and it started gushing. This is not normal. By this time Lane was having trouble breathing. Will listened to him and took his pulse. His temp. was 100.6. "We need to go" I said. "Call 'em" Will said.
Lane and I took our 3rd ambulance ride together. Recognizing the ER staff is your 1st sign that you have done this way too many times. He was given 2 intraoscular IV's. This is where it goes straight into the bone. He needed fluids and he needed them fast. His blood pressure was dropping and it was the quickest way too get them in him. The OR doc was gracious enough to let us stay while they intubated him. I got to watch and Will told me step by step what they were doing. I love my firefighter/EMT-IV! He was sent for a CT scan which revealed free air and fluid around the tummy. Really? You're telling me he perfed AGAIN? Twice in 3 1/2 years? Really? I just leaned on the table and asked if anyone knew what it was like to live their life twice? This was Oct. of '06 all over again. Except this time I was numb, it was like it was happening to someone else, like I was watching a TV show, especially in the ER. "We going to surgery?" I asked. "yes" the doctor replied. "Let's go" I said and walked off down the hall.
At that exact moment, 4 prayers were lifted up simultaneously by Will, Bill, Jean and myself, "God, please let Dr. Morgan be on call."
We were sent to a waiting room on the 5th floor. The door opens. Walter Morgan, dressed in scrubs, walks in. "There is a God"...

Just Breathe

Ever felt like the walls are closing in on you? That's how I feel right now. It's 12:30 at night and the only thing keeping me from walking out that door are sleeping in the next two rooms. That's not to say I wouldn't come back, of course I would, but I'd certainly make a run for it, if only for a little while...
Lane has spent most of the day screaming and what time he was calm he kept burying his face in the wedge. I guess I should have reminded him to just breathe too. At times I feel like that's all I can do.
Yesterday our neighbor came over and said she just needed to draw from my strength. She was having a very hard day caring for her mom. She wanted to know how I do it day in and day out. I told her her the truth. I don't know. I know that wasn't the awe inspiring answer she was looking for but it was real. I do it because there is no other choice, because that is what God's plan for my life is, because I love Lane. Why does anyone do what they do?
So Miss Charlotte, I hope your day was better. Mine sucked but if you were able to have a better day today by drawing from whatever strength you think I have, then it was worth it. I have had a long break from hell, I can take a few more days of it if it will ease someone else's burden.
I know this post is more rambling than usual but that's what no food, no sleep, too much alcohol and too much stress gets you. I'm the only one who reads it anyway.
You have no clue as to what someone's life is truly like unless you live it everyday with them. "Be kind, for everyone you meet is fighting a hard battle."