Thank you for taking the time to pray for Malachi this week as we dealt with his dental procedure. As usual, things didn’t go exactly as planned but he has healed wonderfully and is almost back to his normal.
Surgery days are always difficult for us, and this one was no exception. I personally struggle to shut my brain off the night before a procedure as I process the “what-ifs”. Before I knew it, 4am rolled around and it was time to get moving for our big day. We checked into the local children’s hospital an hour away and started the dreaded process. The plan was to focus on Malachi’s 8 molars- cutting the gums, drilling out the decay, and putting stainless steel crowns on.
Before we knew it, the time had come for us to give him hugs and kisses and send him off with strangers. Like a band-aid being ripped off we have learned that it is better to get through this step as quickly as possible, and we went back to our little room to wait. We got another curtain room…which we loathe! There is something about sitting nervously and having to listen to 20 people casually chatting on the other side about their in laws and kids…stress free lives. Ah the dreaded curtain rooms.
After about 30 minutes the little phone in our room rang, which is never a good sign. My stomach dropped as I jumped up to answer it. The nurse on the other line assured me that Malachi was okay but that the surgeon needed to speak with me. Yikes. If it is a big enough deal to call, that is one thing. But if it is a big enough deal for the surgeon to stop what he was doing to have a talk, it is never a positive sign. The surgeon explained that there was more damage than they initially realized and said they would need to do some work on all of his other teeth as well. He asked for permission to do what needed to be done to save the teeth from being pulled, which we readily agreed to.
Malachi ended up getting crowns on 15 of his 16 teeth, leaving one little canine tooth crown free. The molars were done in stainless steel and the others were crowned with white, natural looking crowns. Truthfully, it looks great! It looks so much better than my mind had imagined it.
The procedure took several hours…longer than the 45 minutes it was initially predicted to take. We were taken back to the recovery room to see Malachi after it was finished, and he was his usual hysterically upset post-op self. His post-op cry is an awful sound that we don’t hear any other time. It is such a sad and confused cry and immediately puts Jake into Rambo mode, looking for the person causing the pain so he can attack. Literally. So I sent Jake on a walk around the room to calm down a bit and focused on calming Malachi.I picked him up and immediately blood poured out of his mouth. He also had a tube down his nose during the procedure, leaving it bloody and he had dried blood all over his face. Jake and I took turns comforting him and after a long hour in recovery we got him to close his eyes. After he was asleep we were able to successfully get him off the oxygen.
The rule of thumb is that you can’t get discharged until you eat something. Malachi was still bleeding pretty heavily and Jake and I both knew that there was a zero percent chance of getting him to eat anytime soon. We know from previous experiences that Malachi absolutely thrives at home versus a hospital setting, so we talked with the anesthesiologist about making an exception. He saw Malachi’s history and felt confident that we wouldn’t allow him to dehydrate at home so he signed papers for discharge. Malachi immediately calmed down when we strapped him into his car seat to head home.
So the three of us ventured home, all covered in blood and very tired and hungry. We went into our typical surgery survival mode and took turns caring for Malachi and catching quick naps. The first two days were difficult for Malachi but as long as we kept up with his pain meds he did well.
On Wednesday things started to look up and we were able to get him weaned from meds. He started acting like his normal happy self, so we thought he might enjoy a quick swim. And boy were we right…he splashed around for nearly an hour and had a blast! We got him home after a few hours we noticed that his body temperature was rising. That night he woke up with a fever of 102, and we started to get a little worried. Oddly enough there were no other signs or symptoms of anything being wrong so we watched him very closely and kept the fever down with reducers.
Malachi was still acting like himself, but his seizures did start to increase in both frequency and intensity. The first thing our minds went to was infection (either shunt or mouth) so we called the surgeon to get his input. He said that it didn’t sound tooth related but could be the start of pneumonia from the breathing tube. He said if it got worse or other symptoms popped up to take him to the pediatrician.
His fever lasted until Friday, and the entire time he was his happy, silly self. These strange fevers have been popping up a lot in the last few months, and after doing some research we have learned that this is common in children with brain injuries. The hypothalamus part of the brain is responsible for temperature regulation and when it is damaged the brain can’t accurately tell the body what temp to settle at. We are guessing that the stress of his dental work mixed with the sudden temperature change from the pool water just set his system a little haywire.
But Malachi has been fever free for a few days now, so I guess we are past it all! He is acting great. Yesterday he and I were listening to the television and heard a commercial for a horror movie and he thought it was hilarious for some reason. We started re-enacting the commercial and he got so tickled and I was able to video some of it for you. It will make you smile:
So other big things from this week…Jake and I celebrated our 8th wedding anniversary!
This is the second year in a row that Malachi has had a surgery within 24 hours of our anniversary so we didn’t get the chance to celebrate on the actual day. We decided that we would celebrate with a nice meal the next time we were near Chattanooga, which will hopefully happen this week if Malachi’s complicated little body will cooperate haha!
Divorce rates for special needs families are statistically higher than average families, which is a very sad statistic. But in other cases complicated situations can bring a couple closer together, which is exactly what has happened in our relationship. I am so thankful that God united our paths all those years ago!
This week a very close friend of mine had a pretty big surgery. I went to visit her at the hospital, and discovered that I have some major anxiety when in that setting. I think being back in an adult hospital wing took me back to the days surrounding Malachi’s birth and my recovery. I physically went weak trying to walk through the hallways to see my friend, and had to stop and take a deep breath. I became incredibly anxious and emotional for absolutely no reason, which I never saw coming.
Hospitals can be a wonderful place of healing, but I am afraid that for me they will always evoke emotions that I try hard to stifle. The more that time passes the more I am finding these triggers for my emotions. As wonderful as it was to stay at the Ronald McDonald House for all those months, I not cannot look at the building without getting anxious and emotional. When we have to pass it in the car I have to look away, as it sparks too many memories or dark times in our family. I am hoping that time will help me get past this, but it is definitely still a struggle.
Truly though, I have a hard time finding things these days to complain about.
Psalm 107:28-30 “Then they cried out to the Lord in their trouble, and he brought them out of their distress. He stilled the storm to a whisper; the waves of the sea were hushed. They were glad when it grew calm, and he guided them to their desired haven.”
I love the wording here…”He stilled the storm to a whisper.” This is a great way to describe our life right now. We have been in the waves, in the midst of a massive storm. And God has stilled the storm to a whisper.
We have crossed all the necessary surgeries (for now) off our list. Malachi is sleeping at least one long chunk at night, giving all of our bodies much needed rest. We are able to do things that a typical family does…swimming, long walks, play dates. We are happy and healthy. We are enjoying God’s whisper on our lives.
Your prayers and thoughts were felt by our family this week as we tackled unpleasant things. Thank you for your support and love. May God find a way to calm your storms this week.
Jake, Leah, and Malachi