We were able to have our first ever vacation as a family of 5 when we went with our families to a cottage up north. The first 24 hours were very stressful because a storm had passed through the area right before we arrived, and as a result there was no hydro. While we have batteries for Malachi's ventilator, oximeter, and suction machine, the battery lives last between 6 and 9 hours. Further, we do not have battery backups for his humidifier, which he needs at night while sleeping. We do have a number of different options for situations such as these: an adapter for our van to charge the ventilator and oximeter and a fully charged marine battery that we can also plug some machines into. However, we didn't know how long the power would be out in the pretty remote cottage up north. Thankfully, two separate strangers offered to let us use their generators overnight and the power came back on after 24 hours!
It was also stressful and difficult to navigate having Malachi at the beach. He is unable to go in the water because he cannot get any water in his trach or stoma (hole that his trach goes into) or he would drown. Further, his machines are not waterproof... or sand proof... or sibling proof... Thankfully, we were able to come up with a few creative ideas and we had lots of helping hands from our families so that Malachi was able to enjoy the beach too.
Photo by Vicki-Lyn Photography
Malachi started crawling in mid-April and can now walk along furniture and behind push-toys. He knows a number of words too, although sometimes he just mouths them when he cannot make noise. (For those interested in the logistics, Malachi is able to make some noises when air leaks beside his trach tube and up his windpipe - which is where his voicebox is located. When the trach tube is in a certain position and he figures out how to use his vocal chords at the same time, then he can make noises.) Overall, Malachi is still behind his siblings but he is not far behind at all anymore. He is our persistent and stubborn little guy, and his personality actually helps him quite a bit developmentally.
Liam (photo by Vicki-Lyn Photography)
Malachi still does not eat much by mouth, and as parents this mandates that we have a lot of patience every mealtime. He likes to try one or two bites generally, but usually spits them out eventually. It is very common for children to have oral aversions when they have trach tubes and not eat anything by mouth. We are very thankful that Malachi at least likes to try and explore tastes and textures, even though he still needs full meals through his g-tube.
Malachi also likes to try drink from sippy cups now, which was not planned..! Usually it is quite dangerous for children with trach tubes to try and drink as the risk of aspiration is high. Thus, most medical teams do not even let a child try to drink anything as long as they have a trach tube. Malachi, however, managed to steal a sippy cup one day and decided to try drink from it before we could get to him. We were not extremely concerned (certainly not as concerned as his medical team was!) because we have seem him successfully swallow his spit up (gross, we know, but very much a common occurrence for the poor guy). Anyways, Malachi has since proven that he is good at drinking small amounts of water or milk. We watch him closely and he will need to stop drinking altogether if we see any red flags.
Taylor (photo by Vicki-Lyn Photography)
With the warm weather upon us, Malachi seems to have really turned a corner in the last few months and his health has been improving in leaps and bounds! Our medical team has been slowly turning down his breathing support settings while closely monitoring how he is handling each change. Most of the changes are able to be done at home by us as parents, but regularly we go to the hospital and get some bloodwork and medical tests done. Malachi so far has handled all of the setting changes well.
About a month ago, the team felt that Malachi's settings were low enough that the next steps were to unhook him from the breathing support machines for short periods of time. This does not meant that his trach tube would get taken out but just that the tubing and the ventilator are detached from the trach tube. Malachi also needs to be very closely monitored during these times and hooked up to his oximeter to check his blood oxygen levels frequently. When the medical team first suggested this to us, we were thrilled and nervous and hopeful... a ton of emotions all rolled together! We sort of sensed that he would do well with this new change too- since Malachi often disconnects himself from the breathing support tubes (many times with the "help" of Liam or Taylor) and crawls away as fast as he can. Sure enough, Malachi has done incredibly well with small increments of time off of the ventilator. We initially started with 5 minutes off, then 15 minutes, then 45, then 1 hour, 2 hours, 4 hours... and now as of Thursday July 26th, Malachi is allowed to be disconnected for three hours twice a day... SIX WHOLE HOURS OF FREEDOM!
This is what we have been praying for! Not just us as parents... but also the incredible support system around us. Our family, friends, local church family, and extended church family from around the globe. God is truly answering our prayers in ways that we have longed for. We give Him all thanks and glory and praise.
We should note that while the first few weeks of disconnecting from the ventilator seemed to be a breeze for Malachi, we have now reached a point where we can tell it impacts him. He has been sleeping deeper and sometimes needs some extra oxygen while sleeping too. So it looks like we may need to slow down the process for a while and let him get stronger. This may mean going back to four or five hours a day as well.
Malachi disconnected from the ventilator! (Photo by Vicki-Lyn Photography)
With each new phase in the weaning process off of breathing support, we can feel some of our stress melt away. As Malachi becomes more and more stable we can feel ourselves relax a little more. The great responsibility and intensity of parenting a medically fragile child is ever so slowly being lifted. We know that Malachi can still go backwards and that the road isn't going to be perfectly smooth from here on out. We know he will get sick again with a cold or virus or something and that he probably will still not be able to handle that well. Having a trach is also a vulnerable thing- it could come out, become plugged, or blocked. And Malachi cannot make much noise because of his trach and so it is so important that we have eyes on him at all times.
The stress of having full and quality nursing coverage also continues to be significant. We are transitioning into a new nursing model program that the LHIN (formerly CCAC) has just opened up. We won't bore you with all the details but we hope and pray that this decision will be a positive one for our family. Malachi will continue to need someone awake with him at all times for as long as he has his tracheostomy tube, so we are still looking at months if not years of needing night nursing.
As we watch our three little ones grow and develop, and as we watch Malachi improve in his breathing, we can only thank God for how he has worked miracles in our family. It is crazy to think that exactly a year ago we were living at the Ronald McDonald House while Malachi was in the PICU and unable to move much at all without going into respiratory distress. Our family life used to be "survival mode" but it seems that we are (thankfully!) transitioning out of that mode as the triplets get older and Malachi gets healthier. Again, we thank and praise the LORD for His perfect plan for our family. His ways are so hugely greater than our own!
As Romans 11:33-36 reads: "Oh, the depth of the riches and wisdom and knowledge of God! How unsearchable are his judgments and how inscrutable his ways! 'For who has known the mind of the Lord, or who has been his counselor?' 'Or who has given a gift to him that he might be repaid?' For from him and through him and to him are all things. To him be glory forever. Amen."
Photo by Vicki-Lyn Photography
