Having good results like these are a great present this Christmas. I am thankful that, if we had to go through this, that at least the preliminary results are good. My daughter is healing well, is up and about a decent amount for 10 days post surgery, and has very little pain, when taking her medications properly. In cases like ours, surgery was necessary. The spine was nearly up against the ribs – where was the room for her lung? Now, there will always be a curve, but she has room for regular lung function and a chance at reduced pain in the future. We still don’t know what will be in store for her lower curve, but we will tackle the issues as they come. And, in the meantime, I realize how much of a weight is off me now – how long has the prospect of this surgery bore down on me? How long had it seeped into every area of my life? I didn’t even realize until last night, going to Christmas Even services, how much easier I can breathe now – how my stomach is not constantly in knots. I never wanted this surgery for her, never wanted ANY of it! But, we were dealt this hand, so we had to play through it, and the game is not over yet. But, for now, I can breathe easier and rest easier because we got this far. Whew!
I have decided to stop categorizing my posts as Day X of recovery because we are out of the hospital, out of the really difficult part, and onto the rest of a less regimented recovery time. There are a lot of ups and downs now that we left the hospital as well, though. This morning I woke up to our entire part of Michigan being covered in thick ice. This tree is what we saw when we looked in the back yard of my in-laws’ house.
I felt so bad for this little birch tree – it looks like it’s under so much stress, that it could snap at any minute, but it just keeps holding on. This tree kind of reminds me of me – yesterday we had highs and lows – our daughter is awake for longer periods of time, but she still wasn’t eating well and it was worrying me. And, still sleeping a lot. I thought we could reduce pain meds to get her to stay awake more (and her pain levels were very low), but then her pain shot from a 2 to a 5 on a perceived level of pain scale of 1-10 (10 being highest). So, we had to get the meds going at the previous intervals again. I was feeling low – worried that we may have to eventually get her back on an IV because she couldn’t stay awake enough to eat or drink and has almost zero appetite. Worried that my previously very thin child is now just down to skin and bones. So, I had an emotional moment. Plus, the fatigue adds a “weepiness factor” on top of everything. And, then I was concerned that my parents couldn’t make it down to celebrate Christmas with us (because we can’t get up there for Christmas and the ice storm was coming with a vengeance). So, I was upset and I had to get it out a bit. My husband was gone most of yesterday for a basketball game for his team, and he assured me that he would try very hard to get fluids into her the next day and tried to give me a bit of hope.
And, then this morning, she woke, ate a big breakfast and stayed awake long enough to watch a movie. It was a tiny bit miraculous. So, I kind of felt like I could come up a bit under the tension, just to ease up a bit and relax. And, my parents are able to come down! Should be here in an hour or so! And, we apparently are lucky enough to still have our electricity, which many families do not. So, things are looking up today and I am continually grateful for the power of prayer. We have had so many friends and family, as well as people we hardly know, lifting up our daughter in prayer. It’s overwhelming and unbelievable, and it seems to be working. I just keep trying to remember to keep pushing up my burdens, like pushing upward on the sagging limbs of this tree, pushing them heavenward so I can come out from under the weight. So, here’s to bending, but not breaking…as for this tree…we are still hoping for the best.
What is it about being in a hospital that makes a person feel – well – sick? It is, then, miraculous that when they LEAVE the hospital, the patient is all of a sudden so much better than they were 1 hour before at the hospital. That is what happened yesterday. We passed Physical Therapy by walking the stairs, and walking all over the floor (although she still hates sitting), and we passed the medical side of things when she ate and drank (barely) enough to get by without IV fluids. And, our daughter was VERY motivated to leave, so we took the plunge. We were fortunate that the temp stayed high enough that the freezing rain all around us gave us a short window of opportunity to get to my in-law’s house (where we plan to stay until just after Christmas). We timed her meds so that she had her Valium 1/2 hour before we wanted to leave, and – like the Valium magic we have become accustomed to – she konked out hard all the way home. Not a peep or a stir for the drive that, for many patients, is pretty painful and grueling. We got to my in-law’s 1 hour later and she climbed into “Grandma’s super squishy bed” and just sighed a huge sigh of relief. The same as she sighed when she got out into the cold, fresh air for the first time in 5 days. Now, as I write this on Day 5 of recovery, she still hates to sit, but she is happier, more comfortable, and I finally got her to drink a small cup of my fruit smoothie (that contains all the nutrients she needs for her body). I am thinking that tomorrow we will cut her pain meds down even more – her pain is incredibly and miraculously low, and every time we reduce meds, she becomes more alive and more happy. We are so grateful that her pain is low and that she is so much happier now. Tomorrow (Day 6 of recovery), my parents drive down for a pre-Christmas dinner, so we can celebrate together without moving her again. ‘Tis the season, and now we are finally feeling a little bit jolly.
Day three started really rough – and it really didn’t get a whole lot better. She just could not stay awake! She would wake up, we would try to shovel any food and beverage she could into her mouth, make her move, walk, etc, then she would pass out. Waking her for meds and food and movement was really hard – she would become emotionally distraught, dizzy, nauseous. Very hard. We found out later she was on twice the usual dose of Valium, and later in the day our nurse suggested we try and reduce pain meds so that she can stay awake more and get her PT done, eat, drink, etc. So, starting at 6pm she went on half doses of Valium and half of oxy. I was worried her pain would increase (which had been pretty low thus far), but by morning of Day 4 (Friday), her pain was still the same and she woke up much more “herself”. More on Day 4 later, but I write this on Friday morning, after her morning PT – she stayed awake a miraculous 2 hours this morning, was finally hungry and much more “herself”. She cleared PT, climbing the 4 stairs that she was required to climb before going home. She was put back on IV meds the night of Day 3, and we saw she was much more hydrated the morning of Day 4. So, the rest of the day will just be getting her to eat and drink and move. So, we might go home today (Day 4 recovery), but we still don’t know. Stay tuned, I will write more tomorrow…
Day 2 started off rough. She was in a lot of pain, had a lot of stiffness, and could not get comfortable. She could hardly stay awake and was resistant to fluids and food by mouth, which we were really trying to start her on. They took out the IV lines in her left hand, as she had a lot of swelling there, and they were done with most of her IV medications. They also took away the PCA and switched over to oral pain meds. She really liked the pill form of Valium better than the IV Valium because the IV Valium burned when it went into her arm. By early afternoon, she had switched over to oral pain meds – a rotation of tylenol, motrin, oxycontin, and valium. Plus, the stool softeners and fiber supplements. She could barely stay awake, but we tried every time she woke to have her sip liquids and eat something, but she did NOT want to. Physical Therapy came about 1pm, so we made sure she had her pain meds at 12:30 and tried again to get her to eat something. She was able to stand again and do some toe pumps, but was really shaky on her feet and still had a lot of dizziness. They gave her some anti-nausea medication earlier in the day, and we were able to finish the day without vomiting. The nausea started to wear off as the day wore on and getting up to use the restroom started to get easier for her. Early in the day she had some emotional difficulty because she was in so much pain and she was told on Day 1 that Day 2 would be easier “It’s NOT easier, it’s HARDER”, she cried. But, after switching to oral pain meds, getting more tubes out of her arm, and starting to eat and drink a bit, she had some good times where she said “maybe it is better today.” Later in the day, when I was at the in-hospital exercise room, Andy got her to walk more and sit in the chair for 5 minutes, which she absolutely did NOT want to do. He and I also got her to walk to the door and stand a bit. The nurse said that when she went to the bathroom, she had to go out the far side of her bed and walk a bit further, and she wasn’t happy about that, but she did it. I am writing this early on Day 3 (right after the Orthopedic team made their ridiculously early rounds) and she said “Mom, I went to the bathroom in the night and it wasn’t so bad!”. Last night we finally got her eating something – what, you say? Tostidos corn chips. She likes the salt. She loves those at home, so we just let her go for it. Other foods she has eaten a bit of – plain noodles (also how she likes them at home), a few M&Ms (dark chocolate) 🙂 and a few spoonfuls of ice cream. This morning she is asking again for her milkshake. The hospital doesn’t make them, so we will probably try to buy her one at the hospital cafeteria later (which does make them). What she REALLY wants is a Wendy’s frosty, so we may have to get her one of those after we get her to Grandma’s for phase 2 of recovery -maybe still on Friday sometime. So, she did OK with Day 2 goals to do more walking and sit in the chair, also to eat and drink more. Day 3 we need to get her to eat and drink even more, and PT goal is to go and stand for an x-ray. She is not thrilled about that, but she never is when they mention PT. She DOES want to get to “Grandma’s comfy bed” soon, so she’s motivated by wanting to leave the hospital. She said yesterday morning that she was so frustrated that they don’t let her sleep, but last night (the night after Day 2) I think she got a solid chunk – maybe 5 hours. She woke in pretty good spirits after the Ortho team came in today (Day 3), but went right back to sleep – but NOT before I got her to take a couple sips of water! I just put the straw in her mouth when she opens it to talk – yes, I’m evil that way. 🙂
The first night after surgery went well – we were still up every hour with the usual check-ins (making sure she could move her limbs, that her blood pressure was high enough, etc), but Andy and I surprisingly got some sleep on the fold out benches in the room. Today we are hoping to get moved to the 12th floor to regular recovery rooms. Our daughter wants to move – her muscles are tight and they were not able to give her valium to loosen them until she was taken off the blood pressure medication. They have also been giving her medications to combat the nausea. Since starting the Valium, she has been able to tolerate ice chips. She has not really complained of pain from her surgical site – more so the stiffness in her lower back and the horrible Foley tube.
By midday, the catheter tube, along with her inter-venous blood pressure sensor, was removed, and we were moved to the 12th floor for our regular recovery room. We were immediately greeted by Lynn, the “host” for the floor, who filled us in on the essentials – where the family lounge was, the nourishment room (so we can get our daughter beverages or popsicles or ice cream in between ordering food from the room service place), the laundry room, the craft room, etc. Our girl was able to start making trips to the restroom, which was now in the recovery room (each room here is private, with a private bath – including a shower – and 2 fold out “beds” for the parents to “sleep” on). Toward the end of the day, though, the pain got worse and the meds were not cutting it like before. She had a hard time finding comfortable positions and battling the nausea to try and sit up more…we tried to get her to sip more liquids and she ate a few bits of plain pasta and ice cream before falling asleep again. So, Day 1 we felt like we went backwards a bit, but we know that the 1st day of recovery is supposed to be worse than the day of surgery, so we are on target. We told her it would get easier on the next day, and that gave her hope…
A while after I started writing this blog, I came to the conclusion that we were destined to run the entire course of this condition called Scoliosis – and, until today we had experienced everything but ONE thing – the big, daunting, terrifying thing called surgery. And, today, we have made it through that. Today was surgery day – the day we have been fighting against for 6 years. The day that we did everything up to now to avoid. And, as other Moms who have gone before me have said, it was “not as bad as you think it will be”. Sure, it has been hard and scary and all those other things – but, we have been enormously blessed today by the success and talents of the Doctors and staff here at University of Michigan Mott Children’s hospital. And, I have to say, I believe due to our friends and family surrounding us with love and prayers. Our daughter has been a trooper through it all – even when coming out of anesthesia, she was joking and in good spirits. She is resting soundly now, as we wait for an ICU room, but I was anxious as I waited for 8 hours in the waiting room for news.
The wonderful thing is that we had parent pagers, so the staff in the O.R. could send text messages directly to our pager. So, every hour and a half or so they would tell us she was doing great. When we finally got the call to go up for our consult with the Doctor, we knew we were close to being done. When she first entered the room, the Doctor said, “That was really tough”. Apparently, because our daughter started with Juvenile Scoliosis and was diagnosed so young, her curve has become very stiff and inflexible over the years. Therefore, the Doctors had to work much harder to move the spine into the desired location. The Doctor said she would be trying to perform a procedure where she would shave down the bone between the vertebrae to create more room for the spine to move over. She was hoping to do 3. However, after 1, the neuro team lost neural impulses to her left side – they were not sure if there was a loose lead or if she was indeed experiencing side effects from the work so close to the spinal cord. Therefore, the Doctor had to stop doing the bone shaving and make the best of what she could – she did not want to risk paralysis. She also had to use hooks instead of screws in some places because the part of the vertebrae that they attach to was so minimal in some areas. Hooks may not hold on as tight, but she couldn’t risk putting in screws that might not stay put – a screw can do more damage if it breaks loose than a hook. So, the Doctor did the best she could – she was hoping for more correction, but she still took it down from about a 92 degree curve to approximately 41 degrees – which exceeded her expectation of a 50% improvement in Cobb Angle curve. We were not disappointed with this result, but still the Doctor had hoped for more. Other implications are that she was unable to have an epidural coming out of surgery, so is reliant on her PCA (Patient Controlled Analgesia) for pain management. The Doctor said that it is important to keep her blood pressure high to keep blood flow strong to her spine, so that her spinal healing will be more rapid. We are watching that closely.
The nurse in the recovery room said that we couldn’t have hoped for a more smooth transition from Anesthesia. Our daughter woke up relatively happy, joking around with her Dad and messing with her swollen lips and mouth (we were told to expect the swelling as a result of laying with her face down all day). But, she was pretty coherent and has been drifting in and out of sleep all evening as we wait for our ICU room. At one point, she wanted to roll to her side, and we went to assist her, and she just flung herself on her side all by herself. The nurse said it was pretty incredible for a child coming out of this surgery.
We have been shocked, overwhelmed, and comforted by the amount of friends and family who are sending love and prayers. We cannot thank everyone enough and appreciate all the love.
Later: After 4 hours in the recovery room, we were finally moved to our room in the ICU. We settled in for a long night and managed to get some sleep. The staff here continues to be great. More tomorrow…
This week has been quite overwhelming – overwhelming with the usual Holiday preparation, plus the usual surgery preparations. But, also overwhelming in a great way, with the love and support from so many people. There are people that I didn’t even know KNEW about what our daughter is going through that came up to one or another of our family members to express that they are praying and rooting for her. I can’t tell you how special that is, especially considering that I don’t take the power of prayer lightly. One of my favorite Christian artists, Steven Curtis Chapman, has a song called “Let us Pray”. In the lyrics he says:
I hear you say your heart is aching
You’ve got trouble in the making
And you ask if I’ll be praying for you please
And in keeping with conviction
I’ll say yes with good intentions
To pray later making mention of your needs
But since we have this moment here at heaven’s door
We should start knocking now, what are we waiting for?
Therefore, I usually do not make empty promises to pray for others when I don’t intend to stop and actually DO it, and I have been thinking to myself, that if every person who said they were praying joined together – then our daughter would be buried (in a good way) in those prayers and supplications to God. I would love to say that my fears don’t exist because I know I can trust God in all things, but they still do exist; because sometimes bad things happen. I trust in a God who can see people through any challenge (as he has for me), but I also know that IF something were to go wrong…well, I try to stop myself there.
I had a wise Mom tell me a while back that when her daughter went through spinal surgery, they tried to get her a little surprise every day the week beforehand, to keep her distracted and thinking positively. So, I thought I would do that, too. However, it’s been more like Christmas every day here, as the gifts have been pouring in from family and friends. She just keeps saying “I just don’t know WHAT to say!?” She has been overwhelmed in the love, generosity, and support of all of those around her and we are very, very thankful.
So, now I keep trying to pack a little bit at a time, tie up loose ends to be gone for almost 2 weeks and keep my (and her) spirits up in any way that I can. Today my daughter and I are making an inspiration board (a suggestion from the wonderful Child Life staff at Mott Children’s Hospital). The board will have photos of things that make her happy, like photos of family, her pets, and probably just some random kittens for smiles. 🙂 I have also asked family and friends to send me personal small messages of support that I can put on the board. Hopefully this will give her something to look at while recovering and trying to get through the difficult week ahead of her.
I pray you all have a wonderful few days. Check in daily for updates on how she’s doing during surgery and recovery.
Yesterday we journeyed the 2 hours to Ann Arbor, Michigan to my daughter’s pre-op appointments at Mott Children’s Hospital. The new hospital there is gorgeous. We are so happy we can go to Mott for this surgery! We picked up my Mother-in-law on the way to the hospital, so I could have another set of “eyes and ears”, as we had SO MUCH to take in! Our first stop (after the challenge of finding parking and roaming the hospital looking for radiology) was her bending x-rays. But, when we got there, they decided that first we needed to meet our NP Susan next door. It was there that we waited a half hour, thus putting our day onto it’s very own timetable. 🙂 But, Susan assured us that the other departments would wait until we were able to get there and that everything would get taken care of – and she was right! Susan answered the long list of questions we had put together on my daughter’s Kindle. However, in the first few minutes, she told my daughter that she would need to have her blood drawn and then my daughter went immediately into panic mode. She was so terrified of that needle!
Susan explained many things to us, including a bit about the recovery period. She also said we would need to wash our daughter’s back with special antibacterial soap the night before and the morning of surgery. My daughter had just finished Michelle Spray’s book, so one of her questions was “Will I need a blood transfusion?” Susan explained how her blood would be hooked up to a “cell saver” to preserve as much of her own blood as possible that might exit her body during surgery – they keep the blood, clean it, and put it back into her body. Any additional need would be from a blood bank. We also asked what she could wear after surgery, and the answer was (as with most questions), “it depends on how you are doing”. But, Susan said usually patients are ready by day 2 or 3 to put regular clothes on and start feeling normal again – showers can probably occur after 3 days.
Our next stop was the set of x-rays that the Doctor will need to plan the surgery – including standing poses, lying down poses, and bending x-rays (to determine how flexible the spine is and how much correction we can expect). They told us that usually surgeons try to accomplish a 50% correction – so, since our daughter is around 88 to 90 degrees curvature, we can expect about 40-45 degrees when all is said and done. A great improvement, but still a substantial curve. We know that she will never have a perfect x-ray, but, hopefully they can also get some de-rotation out of the spine and her rib hump in back will subside.
After that, we were hungry, so we fought the major crowd in the small cafeteria downstairs and had some lunch. Then, we headed to the Pre-op/anesthesia department. We spent some time there with one of the nurse assistants, and she walked us through the process we can expect for anesthesia. We were hoping that our daughter would have the choice to either be put to sleep by mask first, then her IV lines inserted, or have the IV lines inserted while awake (she hates needles and would prefer the first option). However, we were told that, although most of the anesthesiologists will accommodate the patient’s desires, there are a few who are more “tough love” style and won’t let a 12 year old skip the needles…I guess we will just have to hope for one that will put our daughter at ease as much as possible. They also explained to us that in addition to the anesthesiologist and his/her nurse, who will be there to watch our daughter’s vitals at all times, there will also be a neurologist (and his/her nurse) there to spend the entire surgery monitoring her neural impulses. Since the surgery involves her spinal column, and not her spinal chord, they want to make sure they don’t do anything that will damage the spinal chord (VERY IMPORTANT!) So, they have the ability to send impulses through each area of the spine, and make her various appendages move, to ensure that no nerve damage is occurring while each area of the spine is being worked on. We, of course, were full of questions we DIDN’T ask, like how the surgeon, anesthesiologist, and neurologist can be in that room for 6-8 hours and not take potty or food breaks, but maybe that is a subject for another article, when we are after-the-fact. 🙂 All we can do is trust that they have the best training and ability and place our precious girl in their hands (literally).
Once the meeting in pre-op was done, we got a tour of the facility by a “Patient Life” representative. Patient Life is a program that U of M has, were they have staff there solely to help the patient and their families through the difficult time. They provide games, crafts, and other diversions for the kids, as well as help the parents with personal needs. I found out that there is free laundry on the floor where we stay, an exercise room for Mom and Dad to combat stress, and that our patient can order “room service” from her TV, anytime of the day or night. The TV also links her to the internet, shows movies and TV shows 24/7, and has games to play. She is looking forward to ordering herself a chocolate milkshake when it’s all said and done!
Once that was done, it was time for the dreaded BLOOD DRAW! She did NOT want to go back there. She sat in the waiting room, fretting and worrying, until she and I walked back to the fated seat. She put out her arm, watched them stick the needle in (yes, she insists on WATCHING), and, when it was all over, she was grinning from ear to ear. She didn’t believe me when I said she was tough and that she could do it! She just had to prove it to herself, and then she was very proud!
On the way home, she and I stopped for dinner and a bit of shopping – we found her an adorable new set of pajamas that she is looking forward to sporting around the hospital. She also said to me that she is actually looking forward to the surgery. Not the pain, of course, or trials of recovery, but she is looking forward to how much better she will feel and look after the surgery. Although she said it doesn’t bother her “much”, she is really hoping the rib hump in back goes away! Much of her positive outlook I attribute to her JUST finishing Michelle’s book – she really gained some confidence and insight as she saw what life can be like AFTER. Thanks, again, Michelle, and thank-you to everyone who is praying for our precious girl! We appreciate it so much! We are praying at this point that she stays healthy and the surgery will NOT be postponed – they said as long as she doesn’t have an un-responsive fever or is coughing up “colorful goop”, then we should be all set. Prayers are appreciated! The waiting is so hard!