Visiting old friends for the holiday

Last Thursday, the 20th, we came to Cincinnati for our neurosurgery follow up. It had been a week since discharge and unfortunately, Thomas had contracted some virus from his older brothers. Our primary care doctor had confirmed the previous night that it was RSV, a well known but very hostile little bug that wreaks havoc on the repiratory system. Since little Thomas is already immune compromised, it was hitting him especially hard. At the neuro apt, they weren't comfortable with sending us home with the way he was breathing so they sent us down to the Emergency Department. This was our third ED visit in less than 30 days, so suffice it to say, we are pretty familiar with everyone down there. They call us by name and comment on how big he is getting. They immediately notice his increased work of breathing and are concerned about his oxygen levels. Long story short, they admit us to the PICU. I am grateful to have him in a place where he is safe and monitored for when things go wrong, but I also dread being admitted. I have probably touched on this before, it is so strange to simultaneously hate and love a place. It turned out he did get worse over night and into the next day. He was put on high flow oxygen for a while and had to be suctioned out hourly, but he battled through like the little warrior he is and we were discharged Sunday the 23rd. Once again, it was glorious to be home. If there is a pretty significant silver lining from all of the hospital trips it is that I really do just appreciate being home with my family. Even just sitting in the same room while the two other boys wrestle each other, makes me smile and soak it all in and just be thankful. Hopefully Thomas will feel the same way one day! 

Home we go

Relentless pursuit of health

Today Thomas had his FEES, where they let me breast feed him while they put a camera tube up his nose and threaded it down his throat. They were trying to see if he was aspirating during breast feeding, which is why we have been doing the feeding tube up to this point. They roll in this big machine that looks like a robot with a monitor for a head and all kinds of wires for arms. The doctor comes in behind the machine along with a tech and two speech pathologists and then about 9 other people. Mind you, we are in a hospital room, not known for their size, with a crib, a pullout couch - that is still pulled out into a bed with sheets and pillows all strewn about - a rocking chair that I am sitting in and a desk chair that I have my feet on while I am holding Thomas. The speech pathologist introduces the doctors and then mentions that these other people are from Israel and are learning about this aspect of medicine and they would like to see a FEES in real time if that's ok with me. I am by no means a clean person, ask John, or better yet just come to our house. I don't straighten regularly, I can blame this on having kids, but that would be a lie, I have always been that way. Clutter doesn't bother me. But for some reason when all these people walked into our room I became very aware of the clutter and lack of organization in the room, like I should be picking up for them...in the hospital...with a sleeping little baby in my lap. It was really odd that this was my first thought seeing as I was about to have my breast out feeding Thomas in front of them. I think when it comes to this medical stuff, I really want to understand EVERYthing about what is happening. Most of the time, everyone is very accommodating and will answer any and all of my questions ad nauseam, but for some reason I was thinking if they see what a slob I am, they may not give me the respect to explain or even listen to my concerns...dumb, I know, but that's what crossed my brain, but I had no problem whipping out the milk makers and feeding him in front of strangers who are staring intently and whispering. Besides that, the study was awesome. He is fine at the breast and doesn't show any aspirating towards his airway. In fact, the doctor used the words "perfectly normal" and that is the first time that I have thought of that phrase as a compliment and the first time it has been used in respect to Thomas. So we are free to breastfeed again and lose the feeding tube. Great news. 

During the assessment this morning, from the doctors rounding, they noticed some asymmetry in his eyes and possible cloudiness in the left eye. This could be a sign of a few things, so they called in ophthalmology, who dilated his eyes to take peek at the backs of them. The pressure was increased in both eyes and the left eye has an enlarged cornea, they think this is consistent with glaucoma. The plan for this is to do drops in both eyes to keep the pressure under control and relax it, but to monitor very closely. If it is, in fact, glaucoma, he will need surgery to preserve his vision relatively soon. Poor kid just can't catch a break. We seem to get one thing figured out and tesolved and them another one pops up. 

With all these hospital stays, we are definitely making friends though. The ER docs know us by name and we have a few favorite nurses on the neuro floor. The speech pathologist, who got our FEES moved to today rather than the 24th, changed around her schedule so she could be the one here today with us. The people from the MM clinic have come to see us regularly and the Spina Bifida Coalition of Cincinnati has sent us regular meal cards so we can order food to our room at no charge, plus they have us tickets to Disney on Ice here in Cincy so we could take the two older boys!! In our relentless pursuit of health, we are continually expanding Thomas's already amazing village helping him through this journey!!

Coming home - written 11/10

This is our happy to be going home face....

We weren't able to get the FEES study scheduled until November 24th, so we opted to go home rather than wait in the hospital for 2 weeks. We have to feed through a preemie nipple and feeding tube until then and Thomas is thrilled with this news...

Second wind

Well home was nice...for a night!! 

We got discharged Monday night with a feeding tube to protect his lungs from aspirating. He is allowed to eat for 20 minutes on a preemie nipple from a bottle, then we do the rest of his feed through the feeding tube. Since the NG tube is something new, we had a home health visit from a nurse. During the visit, she took his blood pressure and it was high (136/92). Yes, this is high, but that was the same pressure that they discharged us with the day before. So taking our cue from the docs who discharged us, I was not worried. Unfortunately, everyone else was. The home nurse called around and it turned out that they should not have discharged us with that high blood pressure....that might possibly be my worst fear ever, sending us home when it is unsafe. The doctor who discharged us called and said that we should come down immediately to the ER. He also let me know that he had thought of dealing with the blood pressure before discharging us, but had decided to wait. Thomas is on a steroid medicine that is infamous for raising blood pressure so they were thinking once the steroids were done and cleared his system his blood pressure would normalize. Unfortunately, the kidney doctors were not consulted on this decision because they disagreed and wanted to get a blood panel run to see if kidneys were ok. So back to the hospital we went. Went through our ER process and got another CT scan and x-Ray to check shunt and Chiari - this kid better get a super power from all the radiation he is getting - all images were normal so that was reassuring that at least this visit wouldn't end with another surgery. They took blood and sent it out to nephrology to check and decided they wanted to admit us while everyone tries to figure out what is up with his blood pressure....so back we went to good old A 7 on the neuro floor, but this time we have a recently updated room - living in luxury up here! 

Blood work all came back normal for his kidneys, which is wonderful! They think the blood pressure is from the steroids causing him to retain water, so they put him on a diuretic to help flush it all out and hopefully manage blood pressure until the steroids are out of his system. We have to stay in the hospital until they see the blood pressure trending the right direction, then we can go home on the meds and monitor from home. 

The other good news is the FEES got moved to tomorrow (Thursday) so we will get to see if he is aspirating when breast fed. Originally they told us it would be November 24. If he is not aspirating, then we can get rid of the feeding tube and just breastfeed again!!! Also tomorrow, he gets his stitches out from his shunt site and his decompression site. 

The lesson to take from this trip is if we hear ANYone have a concern about any aspect of Thomas, we need to make sure the right people are consulted before we hit the parking lot. It was wonderful to go home and see the other boys and sleep in our own beds for a night, but it was a pretty defeated feeling coming back and getting admitted again in less than 24 hours. Of course we will do anything for Thomas and if that means being here again, then let's do it, but this time lets talk to all the right people before we leave. 

Catching up

We are still in the hospital. He is healing well and all the incisions look good. We were moved off the PICU floor and are now residing on the Neuro floor. It's a little more laid back up here, we can eat and drink in the room and the TV is much bigger. We are released as far as neurosurgery is concerned. Unfortunately, the pediatrician here is concerned with the results of his swallow study. The study showed that he does well with thickened liquids, but on a thin liquid he was showing some penetration - meaning the liquid went towards his airway. This concerns them because breast milk is a thin liquid and he could be at risk for aspirating it into his lungs. Chronic aspirating can lead to serious respitory issues later in life and cause pnemonia now. To ensure he is not aspirating breast milk, we have to do a FEES, which basically means they put that camera tube back up his nose and watch through it while I feed him to see where the liquid goes. If he is aspirating, we need to change how we feed him. Most likely we would do a feeding tube while we give his vocal cords time to heal and hopefully he regains the ability to use his vocal cords, which would then protect his airway and keep him from aspirating and we could lose the feeding tube. When we first heard 'feeding tube' it was quite daunting to think of and I was not liking it, but then I remembered thinking the same thing about cathing him and now that is second nature. So if it gets us home safely, bring it on. We are still waiting to see when they can schedule the FEES. Will update when I can. 

Love

"Still far away from where I belong, but it's always darkest before the dawn..."

We have been here for 10 days now, which is almost as long as our initial NICU stay, but this one is much harder. Maybe since the first one was expected and we really didn't run into any surprises, it was easier to endure, but whatever it is..this one is getting to me. I had been doing well and keeping my head up, always trying to learn as much as I can about everything that is happening, but a day or two ago, I hit my wall. I fell into the dark place and started the 'this is so unfair' thoughts and all I could see was how much I miss my boys and how poor Thomas just can't catch a break and it just seemed like one thing after another. Once you let yourself start down that nothing-is-fair road, it spirals out of control quickly, especially when sleep deprived and a little lonely. I was jealous of everyone back home who did get to spend time with my boys and be part of their everyday lives. Hearing stories or seeing pictures of all I was missing at home, just made it worse. I missed Halloween and this was the first year John went trick or treating like a big kid, I won't get that back. I was supposed to help in his class for their party and get to see him interact with all his friends, broke my heart to miss that! Being on Facebook and seeing healthy babies or pregnancies, just produced sadness that my poor baby is in a hospital bed with stitches and wires all over him. By no means am I writing this for pity, I just want to get it out there so I can remember the feeling and be better prepared next time it starts to happen. After all, this blog started as a journal for Thomas' journey and this is a very real part of it. I let myself get focused on all the negative, which is unlike me, but that just speaks to what an intense situation this is. I hate this place! But then yesterday as I was getting on the elevator to come back up to Thomas' room after getting to see my family for a quick visit in the cafeteria, the light clicked back on. I was crying, as I do when anyone comes to visit then has to leave, and the man in the elevator with me was on the phone. He had on a parent badge and was also heading to the ICU. He was talking about an EKG reading for, what I am assuming is, his daughter, I should also interject here that I am a shameless eavesdropper - if you don't want me to hear it don't say it in the same city as me -her EKG was irregular after some sort of sudden trauma. He was pacing while he was talking. There was something in his voice - concern, anxiety, helplessness, pain -that struck a chord with me. You could hear the love, it was initially masked by all those other emotions, but when I really listened, it was love. Then as I stepped off the elevator to make that soul crushing walk down the dimly lit hospital hall that we have been residing in for the last 10 days, I saw a couple in front of me walk out of a room, take a deep breath and start to walk towards the parent lounge, as they walked they both simultaneously reached out their hands and continued to walk, hand in hand, down the hall. Again, there was the love. This was not a romantic moment in their life, I am assuming, it was just love, most likely in a moment of need. Whatever is going on with the kid they have in that room, they are loving him/her through it together and that is beautiful. Yes, this place can be ugly and hateful and take you to dark places if you let it, but if you look closer, it's filled with love, lots and lots of love. Sometimes it is filled with love masquerading as sadness or anger, but at the base of it, is still love. Once I found the love, this became easier. It's hard to miss my other boys, but it's because I love them and that is wonderful, they are surrounded by so much love back home and that is a blessing beyond belief. It's hard to watch Thomas have to go through all of this, but that's because I love him. It's all so hard because we are doing it right. It's hard because it's love and love can be hard, and sad, or happy and joyful, or even angry and frustrating, but at the end of the day it's love, you just have to find it. So next time I get a little chippy with a doctor for not handling something the way that I think is best for Thomas, I will make sure to follow it up with, "it's only because I love you that I am mad at you right now..." and I am sure they will understand.