Photo by the talented Rennie Linde Photography
Are Malachi's lungs getting better?
The short answer is "no", not since we have come home from the hospital. But that is not really surprising, since the cold and flu season is so hard on kids like Malachi. He is compromised every time he gets sick with even a small cold or virus. We have gone higher on settings since we have been home because he needed more support during several sicknesses. We want him to go lower on settings until they are so low that he can start having periods of time off of the ventilator (breathing support machine) and eventually come off. However, the medical team is very slow to go lower on settings because he is at home and not being monitored 24/7 in a hospital. Thus as a general rule, they are quick to turn him up if needed but slow to turn him down. Malachi's breathing support settings are still very high. We are praying that with the end of cold and flu season we will start to see his lungs improve and his settings turned down a bit.
For those interested in more technical terms, Malachi was on the Passive S/T mode with 27 (PIP) on 9 (PEEP) and a cuffless trach when he came home in October. Today, he is still on Passive S/T mode with a PIP of 24 and a PEEP of 10 and with a cuffed and inflated trach for most of the winter (technically the PIP has improved but that was due to overinflation when the PEEP was increased in December and not considered a "wean").
How is Malachi's physical development compared to Liam and Taylor?
Even though Malachi's lungs have not seemed to have improved much this winter, we have seen HUGE leaps in his development! He can now sit all by himself, roll over by himself, and lift himself on to all fours (not crawling yet!). He can also stand for a little while if we prop him up on something. Overall, he is much stronger in all his muscles. He is working with occupational therapy and physiotherapy on a number of things such as getting himself from laying to sitting, from sitting to standing, etc. He is starting to "tell" us what he wants or doesn't want with lots of new facial expressions too- all great things! And so the gap between Malachi and his siblings in terms of physical development is really starting to close up and it is amazing to see. He is a persistent little guy and he amazes us all with how hard he tries to be like his siblings.
Watching a cat outside (with Mommy right behind Malachi in case his falls)
How has the winter been overall for sicknesses?
Well, let me start by first saying that we have been in extreme isolation this winter to avoid germs. We have had very few visitors since one of our rules is that visitors cannot come if they or anyone in their family is sick. We do not take the triplets to public places aside from medical appointments (and have also said "no" to appointments we felt were not worth the germ risk). Whenever we get home from church or work or anywhere public, we take a shower and change our clothing.
Of course, it was not possible to avoid all sicknesses and we have had a number of viruses and colds hit all three triplets. It has meant lots of antibiotics, puffers, ER trips, high stress levels, close monitoring, chest x-rays, and many trips to the doctor. In October and November, all the triplets had a cold (rhinovirus) which Malachi ended up getting twice and stayed one night in the hospital PICU for observation. In the end of December and beginning of January, Malachi got another cold and ended up two nights in the hospital PICU with suspected pneumonia as well. Liam and Taylor caught that cold too, and Liam is still on puffers because of a persistent cough from that cold. In February, all the triplets had a virus with fevers and vomiting. Then Malachi had another virus at the beginning of March with the beginning signs of pneumonia. Malachi also has had a couple bacterial trach and lung infections since we have been home (happens easily because the trach site is an open hole). During one of his bacterial infections in February, Malachi's suction machine failed and we needed to call 911 since our medical supply company was going to take an hour to get a new machine to us and manual suctioning was not enough for Malachi's secretions while he was sick. Thankfully, the situation turned out well. The paramedics came with their suction machine and got to meet Malachi in a stable situation. While we waited for the new suction machine to arrive, they discussed a few potential scenarios with us and gave us tips on how to direct the paramedics with our medical training and knowledge in an emergency. It was a blessing for us to have a bit of a "practice run", so that we know what to expect when we are calling 911 in a critical situation (although we pray that never happens).
And so, we are very excited that spring is here and cannot wait for the cold and flu season to be over! We look forward to getting outside more, seeing more of our families and friends, and making fewer trips to the hospital! We look forward to not only improved physical health but also improved mental and emotional health for us as parents.
How has the nursing situation been?
This question is a bit tricky to answer because it is a complex situation between the homecare nursing companies, Local Health Integrated Network (LHIN), government funding, and the politics that are wrapped up in it all. Let's just say that it has been a bit of a rough road to get consistent, trained, and reliable nurses and it continues to be an issue. Since we have come home, we have seen 19 different nurses in our home but currently have only 6 "stick" with us. Why such a high turnover? There are a number of reasons: three nurses quit because Malachi was too intense for them to handle, two moved on to different jobs, four nurses were let go because of issues with falling asleep on the job, three different nurses were let go due to dangerous mistakes they made, etc.
Do we have a lot of appointments still?
YES. Although we have occupational therapy, physiotherapy, and a dietician who come into our home to work with Malachi, we still have pediatrician appointments, RSV needles once a month (thankfully, the RSV season ends soon!), hearing tests (they have not been passing their hearing tests but likely because they are not cognitively able to do the test), eye exams (some concern with Malachi's right eye), neonatal follow-up screens, ENT appointments for Malachi, complex care appointments for Malachi (extra when he is sick), chest x-rays, head and abdominal ultrasounds for Malachi, blood gases, etc. We also have been referred to speech therapy, although we have been starting some sign language on our own.
On February 19th, the triplets turned "one year corrected". Although they were born on November 9th 2016, their due date was February 19th 2017 and they will be developmentally compared to their due date for a few more years. We are told by doctors and developmental workers that Liam and Taylor are doing surprisingly well for being 25 weekers, although they are still considered a little bit behind. Our happy little one-year-olds are not walking yet but Liam and Taylor walk along furniture and push around toys on wheels. These two love to chase each other, babble together, and play together. It's amazing and fun to watch them interact, and we look forward to Malachi being able to join in with them one day too. We try to let all the triplets play together during the day but it's a constant battle to keep all 3 babies off of Malachi's equipment! Liam and Taylor have now disconnected Malachi from his breathing machine a number of times and Malachi disconnects himself multiple times a day (and laughs and claps at us rushing towards him!). Liam and Taylor also officially can say a few words. Liam can say "burp" and "bye bye" and Taylor can say "oh dear" and "meow". We are still working on "Daddy" and "Mommy"! Liam and Taylor love eating as well, while Malachi has regressed a bit in this area and takes little by mouth anymore.
Our noisy and happy Liam
It's important to get toys from the very bottom of the box!
Malachi's first time in a swing
"Whom have I in heaven but you? And there is nothing on earth that I desire besides you. My flesh and my heart may fail, but God is the strength of my heart and my portion forever" (Psalm 73:25-26).
Rennie Linde Photography
