6 weeks post-op, January 18, 2011
Ok, so life is finally beginning to go back to “normal.” Of course, our “normal” isn’t a quiet, serene environment but nonetheless, we are getting back into our homeschooling, cooking, cleaning, running routine (versus the ‘no sleep; just survive each day’ mode). I was contacted this week by a sweet mom who is going through this journey with her first born child, a daughter. I was ecstatic to hear that my blog actually talked to someone who would be going through this exact same process, at the same hospital, with the same doctors (though I hated to hear of anyone having to deal with this). I’ve used this blog to keep all of my loved ones and praying friends and family in close contact with all of the happenings surrounding Jake’s surgery and care. At the same time, I always hoped that it would reach those who are in a desperate search for information because they are facing the same path. Anyway, I was able to talk to this mom (I’ll leave out her name just in case she isn’t interested in being “published”) on the phone for about an hour and share all of the details of our hospital stay. Truthfully, it was harder than I expected to talk to her and recount everything we had been through and to hear the fear in her trembling voice. It took me back to when I had first heard the diagnosis and simply wanted nothing more than to wake up and realize it was a dream-I wouldn’t have to put my baby through this horrible ordeal. Whew! Anyways, I was glad to be able to pass on all info I had and do whatever I possibly could to help her journey be a bit more easy (such a wrong word, but I can’t think of the word to describe it-knowledge is power, but this is one situation where nothing makes you feel in control). Due to babies needing comfort we had to end our phone call and she begged me to post more information for all those moms in her shoes. She also wants to talk again and discuss what life was like when we first came home. So, this is for you my new friend….I hope you find it at least somewhat useful! 🙂
We were given the “all clear” early Sunday afternoon to return home. We very carefully, and somewhat nervously, buckled Jake into his car seat (I did make sure he was given a dose of pain medication right before we left so he would be good until we got home). As with everything else, he seemed to think it was no big deal at all…it was just mom and dad who were freaking out!
Ready to go home!!!
Dr. Lily, the greatest pediatrician, who was assigned to our floor of patients called ahead to our Walgreens so that we could pick up Jake’s pain medication on our way home (that was awesome!) So, we carefully drove back to the AV while Jake slept away in his car seat as if nothing had ever happened. We stopped at Walgreens and I ran in and picked up Jake’s narcotic and some OTC infants tylenol. We stopped at Chipotle (yummmo!) and Mark ran in and got our favorite order to go. We arrived home, came inside and Jake continued to sleep away in his car seat. I sat him in front of the lit Christmas tree so as he awoke he’d see all the pretty lights (he LOVED looking at the tree lights!) Mark and I melted into our comfy sofa, ate dinner, and had a good cry together as we praised God for getting us through that portion of this journey.
just got home and still sleeping peacefully
While at the hospital, we were “comforted” with the fact that Jake was hooked up to monitors all the way up until we put him in his car seat. At any given moment, I could glance at the monitor and know Jake was truly ok (and trust me, I was constantly looking). After being in the hospital for 5 days where we only took little catnaps, coming home was refreshing and our bed looked oh so inviting. The problem was that Jake didn’t have any monitors hooked up to him. He also didn’t have that big, comfy hospital bed where his head could be elevated and he was propped up by lots of pillows and blankets. So, after enjoying our yummy dinner we went and set up Jake’s make-shift hospital bed in our room. In the hospital, the nurses put an egg-crate mattress under Jake to make his bed extra cushy and soft (can you only imagine having your skull reshaped and how that must feel to then lay on it???). We brought that egg crate home with us. As his head was still swollen, I wanted his head to still be elevated, so I placed some pillows in the middle of our bed and then put the egg crate on top. Jake’s little body just snuggled right down into it and it looked perfect. He couldn’t roll and he was perfectly elevated. After taking a wonderfully hot shower in our own home, getting into some comfy jammies, Mark and I left the lamp on and got on either side of Jake. This was our sleeping arrangement for about the first week home. We have a queen size bed and I think Jake’s “bed” in the middle took up most of the bed, but it was much better than the hospital sleeping arrangements and we could both see Jake and touch him at all times (which truly comforted him and us).
Jake's bed for the week
A crib sheet fit perfectly over the egg crate
I kept Jake’s medicine and a piece of paper either on the kitchen counter during the day or on my nightstand at night. I was a bit frustrated when I got home and read the medicine order. It told me that he could have the narcotic every so many hours, OTC tylenol every so many hours, there needed to be so many hours inbetween each dose depending on which medication I gave him and he needed to not exceed so many mg/kg/day of acetaminophen. I’m a registered nurse. I know how to do drug calculations. I will say though, I was on a buzz from a major lack of sleep. I wasn’t told how much OTC tylenol Jake could have. So, I used my judgement to “figure” it out. So, every time I would give Jake either medication, I would right it down on my parent with the date and time, exactly how much I gave him, how many mg/kg it came out to for that one dose and then out to the side I’d right how many mg/kg he’d had so far for that 24 hour period. I’d then write down the next time he was able to get anything for pain so if either Mark or I woke up in a daze we could quickly look to see if it was time and if that was the issue. My advice to all parents going through this: make sure you have the doctor explain the prescription in plain English to you before you leave so that you understand perfectly how much to give your child. As I said, I’m a nurse and I figured and refigured it out to be sure. When I was at home looking at the bottles, I remember thinking, “really, I wish they would have just told me that for Jake…he weighs this much, so he can have this much narcotic and this much OTC tylenol every day. Remember that the OTC tylenol is written out in ml so you have to figure out how many mg are so forth. It was simply too much thinking for a parent whose nerves are already frayed. For the first 2 days at home, I simply gave Jake the tylenol with codeine every time he was allowed to have it. I know, maybe some think it’s overkill but I wasn’t about to let my little guy be in pain. I then started alternating the tylenol with codeine with regular tylenol. He seemed to be doing fine with that regimen. By the end of the first week at home, he was on only regular tylenol. For 2 weeks I did continue to give him regular tylenol before he went to bed at night, just to be sure. By his 3rd week post-surgery he was getting nothing and fine.
I highly recommend a bath like this (cost about $30), towel underneath for extra cushion, my hands are free to really work on getting his head clean, he also enjoys the water
a little pillow for his head on the changing table...
Jake’s “major” issue at home was constipation. I know, lovely topic. We had a follow up appointment the week we came home from the hospital with our regular pediatrician. We had been sent home from the hospital with miralax for Jake because he was having this issue in the hospital too (probably a side effect from the narcotics). Anyway, Jake has never been interested in bottles, so he simply wouldn’t take the miralax at all. He was spitting up (sometimes throwing up) and he would arch his little back and just wiggle around ALL day and night. He wouldn’t typically fuss (as long as he was being held) but it was obvious something was bothering him. He’d go several days like this, then he’d have a major blow out and he was fine for a day. Then it would start again. Anyway, my pediatrician gave us a prescription for tylenol suppositories. Giving a suppository didn’t bother me at all (or Jake for that matter), it would stimulate him to go and he was able to get his pain medication (otherwise, he would throw it up so I didn’t know if he was fussy because of his stomach or because he was in pain). The suppositories were perfect because they helped with both issues. If you run into that wall-that’s just a thought. It’ll freak you out the first time you give one, but it slips in so easily you’ll quickly realize it isn’t a big deal at all. I still bought gloves and some vaseline-just a tad bit of vaseline (or lubricant) on the tip of the suppository, the pointy side goes in first and it should slip right in.
about 9 days after surgery he was able to hold himself up in the exersaucer again for a few minutes
It was true what I had been told prior to surgery: Jake reverted back to the time he was a newborn. Seriously, it was just like I was bringing him home from the hospital after birth. He pretty much just wanted to sleep, but it was always in little 1 to 2 hour catnap chunks. All day, all night. We were so buzzed and ready to get a good nights sleep when we got home, but that simply was NOT going to happen. Jake really wanted to be held. I spent many nights and days simply walking around with him in my zombie like state. His surgery was December 8 and it was around January 10 before he started sleeping through the night. Before surgery he was sleeping from about 9pm-7am. January 10th week he was sleeping about 11p-6a. Before that, he literally was up every 1-2 hours all night. It was rough. I’m not going to lie. Just remember that eventually they will get back into their schedule. Please surround yourself with people you are comfortable with that can help you-you will need it and you will want it. My parents came and a few nights I actually pumped and left them with bottles and I went and slept for most of the night in peace. It was simply a necessity. I have 3 other kids, so during the day I was typically up and being mom to them as well, so it was wearing to then be up all night. Just be sure to take breaks when you need it….it is imperative.
smiles like this make all the late nights worthwhile! 🙂
Another tip: accept all help that is offered. We got home Sunday late afternoon and we had stopped for dinner on the way home, so we ate that night. It was late Monday afternoon when Mark very kindly told me that we had no food in the house (before surgery we had gone to NC for 3 weeks, so we hadn’t been home for about a month). Up until this point, Mark would pretty much tell me to go eat, and I’d go eat. I was so “in the zone” taking care of Jake, taking care of anyone else was the last thing on my mind. Mark ran to the grocery store and got a few items so we’d have the basics in the house (and the treats that he wanted). I don’t think I could have even gone to the store and bought anything really-my mind was consumed. My wonderful friends and church family so graciously provided us with meals for what seemed like forever. I’m not even kidding-I think it was like 10 days at least. It seems like such a simple thing, but let me tell you, I don’t think my family would have eaten anything besides fast food or frozen pizza had it not been for those awesome meals. I was so tired that I literally did things from one hour to the next. To cook a meal I would of had to think through what ingredients I needed, gone to the store, and then prepared it. Forget actually taking the brain power to do all of that, I was pretty much holding Jake at all times (not a chance I was going to put him down if he was going to fuss-as long as I held him he didn’t cry, so that was fine by me). So, if you have a friend or family member getting ready to go through this-please take them a meal. If you are the parent going through this, accept the meal. I don’t like accepting help, but there are times that it is simply what you have to do…and this is one of those times. Let me say again-THANK YOU to all of those who did come by and bring us meals….it was so very appreciated!!!
THANK YOU GRAMMY AND PAPA!!!! Just an everyday moment!
I know this is yet another ridiculously LONG blog (so long I’m sure my hubby won’t even be able to make it to the end) but let me throw out one more thing. Make sure you buy pjs and shirts that don’t go over the head for your baby. Even 6 weeks out, Jake is still fairly sensitive to me pulling shirts over his head. For sure, the first few weeks they are so swollen and sensitive, you’ll need button up and zip up type clothes. It can be more challenging to find those things than you might at first think too! If there is a Carters nearby, they had everything I needed…even onesies that were snap up.
16 days post-op, Christmas eve; big brother Blake and Papa decide to introduce Jake to the joy of Hershey's chocolate....oh Papa!
I truly hope this gave you some small insight into what life was like for the first few weeks at home after surgery. Over the next week I hope to go back and blog about the actual hospital experience, but I had a request for this specific info so I thought I’d do it first. If you can think of ANY questions or if I left something out, just drop me a line and I’d be more than happy to help out and share with you! 🙂
Praise the Lord Grammy has the touch! Whew!!!
Hang in there, your baby will soon be back to smiling!