Sunday, November 23, 2014

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! 

Thursday, November 13, 2014

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!!

Wednesday, November 12, 2014

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. 

Monday, November 10, 2014

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. 

Friday, November 7, 2014

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. 

Thursday, November 6, 2014

My eyes must have deceived me....

Last night was a rough night for Mr. Thomas. His pain sometimes adds up on him and he has a rough stretch that we have trouble pulling him out of. He is on some oral pain medicine, but when we feel like his pain is really bad he can get some quick medicine through IV. Last night when we thought his pain was pretty bad we tried to give some fentanyl so he could sleep, but he screamed even louder when the medicine came through the IV. The IV looked fine, but something was clearly wrong so we had to prick a new spot to give him a fresh IV because the steroids that he is on for his inflammation need to be given through IV. They have to call a Vascular Access team to place the IV since his little veins are pretty tough to find. So we have to wait for them to get there, which is tough with a screaming baby in the middle of the night whom you can't pick up. It seemed like it was taking forever and he was inconsolable. When they finally did arrive, they tried to place a secondary IV up higher on his arm, so they pricked him there, but it didn't work, as you can imagine he loved that process. They look at his other arm, which is where his arterial line was for surgery, but it is not right, it is turning purple and very swollen. They begin to have a conversation about what they should do. At this point I am beyond my last straw - it is the middle of night and we have now been at the hospital for a week so we are both sleep deprived and just over this whole experience - so to say my patience was done is an understatement. I was physically angry at the nurses for having to wake him up from sleeping to get his blood pressure and listen to his chest (all important things in the ICU that they have always done). I very curtly say to them that they need to just do his foot since he can't feel it and then be done with it! They proceed to prep the top of his left foot, this is another of those moments that the spina bifida is slightly helpful since we can get IV's and blood draws from his feet without hurting him. They are all prepped and ready to prick him, I finally relax knowing it will be over soon and he won't feel it so I don't need to hold him down as tightly. The nurse says - like the always do - "Okay buddy, here it comes" I think to myself "I just told you he can't feel that, why are you acting like he can".....as soon as they push the needle in, he screams....WHAT??!! Nothing else changed. He screamed in pain and pulled his foot back away from them....again...WHAT!!?? That wasn't supposed to happen!! I ask them if they think he felt that and they said it certainly looked like he did. I jump up out of my seat and yell "AWESOME" which probably came across wrong to most people in the room....We have done that prick before and he has never even flinched, but he felt that one! I immediately started to tear up...how is that possible? My mind starts racing - did I just imagine that since I was so upset and tired and needed something right now to lift me up? Could it have been a coincidence...don't get so excited, it's just a little thing. Wait...no, be excited, it's ok to celebrate this. We needed a win, a pick-up for this point in our journey and Thomas (and his wonderful doctors that did the decompression surgery) delivered it! I still can't really believe it and want to test it some more, but I think they discourage parents from poking their kids with needles in the hospital, probably out of the hospital too.

We are waiting for ENT to come and scope him today and look to see how his vocal cords are looking after surgery, after that we need to go get an X-Ray and see how the bones are all looking in his spine. If both of those things go well, we can take off the collar and most likely we will get moved to the Neuro floor and off the ICU floor, which is good since it is a step towards discharge. It will be hard for anything to top that moment of his foot feeling the needle prick today, but will update with news as we get it!

Wednesday, November 5, 2014

PICU

Thomas is hanging in there. We are still in the Pediatric Intensive Care Unit. He is definitely in some very serious pain and that is so awful to see. All the surgeries are, of course, tough on us, but really this is the toughest part for us. Just having him in pain and unable to get comfortable or eat and sleep, just rips your heart apart. He is on pain meds, but they want to keep dialing them down because we can't leave the ICU if he is on these heavy drugs. The really good pain meds leave him in this state of sedation and we are unable to see if he is improving and can go about his normal tasks of eating, breathing, pooping and sleeping. So as the meds get turned down and he can feel the pain more, the days and nights get harder. There is the obvious pain of the incision site, but also the neck muscles that were cut through are pretty mad and are spasiming at times, plus he is in the immobilizing C collar. Add that up with one 3 month old and you don't get a very happy camper. I always try to find a positive out of all these obstacles we hit and the only one I can think of right now is that I am thankful he is so little. Although he is so little and fragile and it crushes my soul to see him like this, I can't imagine if he were a toddler who could talk and move and understand a little more. When Thomas goes for his surgeries, we walk with the bed to the entrance of the OR hallway and then we have to go to the waiting room and they wheel him off in a different direction. I cry everytime at this junction and I kiss him and wish him luck as well as the medical staff that takes him, but he has no idea what is going in. What about when he is older and cries out at that part? What if he holds onto me and begs me not to leave him...this is not like the first day of school where I can fake it and walk away with a stiff upper lip and a small dose of tough love and then cry in the car, I will absolutely lose it if he loses it. Also, if he were older and in pain and able to tell us of his pain or his hunger or if he had position restrictions that he didn't understand and wouldn't abide by....that all sounds more difficult. So I am thankful that he is so little and won't have to endure the memory of this.  Also I am thankful that this experience has taught me what to expect, so when he is older and we have to do this, we can be prepared with games, toys, visitors, food....whatever it takes. When we were trying to pass the time before surgery as he was NPO for 10 hours (unable to take anything by mouth) I was blaring some music on my phone and dancing around and singing with him - yes we are the weird ones in the PICU, I am pretty sure no one wants the room beside us - I played the songs that remind me of Thomas and his journey and I found myself thinking this could be our tradition. When we are stuck in the hospital, we can have certain songs that we sing and dance to. The more inspirational the better - I am open to any ideas people may have as we often have A LOT of time to pass so the more songs the better. Right now my go to ones are 'Coming Home' by Skylar Grey, 'Wonder' by Natalie Merchant, 'Count on Me' Bruno Mars, 'On Top of the World' Imagine Dragons, 'Seasons of Love' Rent, 'You'll be in my Heart' Phil Collins, 'Ain't no Mountain High Enough' Marvin Gaye, 'I'm Already Home' and 'Rockstar' by Great Big World (Thanks, Dawn!). I also have decided to really learn how to play guitar so I can bring it with us in these times and we can jam, I bet there are studies somewhere on the therapeutic benefits of music. This post really wandered all over the place, I guess that is what happens when you are stuck in a hospital room and your thoughts just jump from one thing to another! 

Tuesday, November 4, 2014

Breaking it down

So the decompression is done, it was 7 hours (supposed to be 4!). He do really well. I will try to explain the procedure as best I can....
The reason for the procedure is that he has a Chiari Malformation. This means that his cerebellum is not where it is supposed to be. It has been pulled (or pushed, we think in Thomas'case) into the actual foramen magnum, which is the funnel like opening at the top of the spinal cord. This space is not big enough to hold the cerebellum and the nerves in the spinal cord and pressure is placed on everything, affecting function. In Thomas' case, we noticed a change in his breathing due to bi-lateral vocal cord paresis (basically he couldn't control his vocal cords because of the pressure from his Chiari). His breathing became stridorous and that is what lead us back to the hospital. If he was older other symptoms we would have noticed would have been trouble with fine motor coordination, balance, headaches and an overactice gag reflux. Most cases of Chiari are not symptomatic, but Thomas is in the lucky minority. Untreated this can be life threatening. What the neurosurgeon did was called a posterior fossa decompression surgery. He opened up the back of Thomas' head and removed a half moon shaped bone from the base of his skull. Once that is removed he cut through the dura to give the hindbrain room. He then decided that more room was needed so he went down to the vertebrate on the spine and cut into the top two vertebrate, removing the boney arch at the back of the top two vertebrate (C1 and C2), this is called a laminectomy. After this he also wanted to relieve a little more pressure, but didn't want to cut any more vertebrate as cutting into two of them will already give Thomas an uphill battle for head control and stability later. So what he did was cut C3, C4, and C5 and lift them up to cut the dura underneath. He then patched the dura back together to make it slightly larger and then laid the bones back down and sew them back together (little dude bones are so cartilaginous that a needle can penetrate them). This is called an osteoplastic laminoplasty. When he did this, the neuro-monitors they had on Thomas showed over a 100% improvement on some of their readings. This means in some areas he may have gained function that he didn't have before, which is incredible news. We won't really know the full effects of the surgery for some time, but as it sits right now it went well and he has to battle the road to recovery. The hardest part of that battle is managing the pain of a three month old that is not being fed....so is he hungry or is he uncomfortable from the collar or is he in pain? It's a guessing game. But we are hopefully in the home stretch of this match of Thomas vs. spina bifida and although it isn't a TKO, I think the decision is going to go overwhelmingly in favor of Thomas


Monday, November 3, 2014

Decompression surgery

They took him for surgery at 1:30 this afternoon. We are in the waiting room still waiting and it is 6:20. They sent an update that it is going smoothly. This is longer than they said to expect so our minds can't help but wander that unexpected variables have popped up that they are dealing with....