The Daily Kaleb

Good morning from a brisk and bright New England morning, where it’s beginning to feel more and more like winter here.

Kaleb continues to make small steps of progress towards recovery. 

Two Steps Forward

It’s been four days since they pulled the breathing tube out of Kaleb and switched from invasive breathing support to non-invasive breathing support (nasal or face mask). 

He started off ok, but because they observed he was continuing to labor to breathe through the night and his blood oxygen level wasn’t super encouraging, they ended up landing on the maximum setting on BiPAP (mask over the nose and mouth that delivers pressured oxygen to assist his breathing). It took him some time to get used to breathing with the machine, but he finally got the hang of it and over the course of the next two days they began to come down on his BiPAP settings as his O2 levels in his blood work were slowly improving.

Yesterday, he had started developing sores on his forehead from the face mask he was wearing so they opted to switch him to a nose only mask (seen in the picture below). This mask had a hard time staying in place and needed constant adjustment and noticed he was having more labored breathing at certain times.

While monitoring his breathing, the Doctors and nurses have also been lowering his sedation levels in an effort to get him completely off of his pain medications. This comes with a slew of withdrawal symptoms (mostly tremors and agitation, causing his breathing and heart to be all over the place).

He's also developed an infection of some sort that they are keeping an eye on. Needless to say, Kaleb’s been working hard the past few days! 

One Step Back

Then last night (Wednesday) we received a call that Kaleb had had an "episode". After changing his diaper he had become very agitated and then his breathing, heart rate, and blood pressure all dropped significantly. They immediately started "bagging" him (manually administering oxygen) and then put him back on the original biPAP face mask (seen in the picture below). Thankfully, he's remained stable all night with no other episodes. 

Mile 15…

This roller coaster of recovery is what we were warned about coming out of Kaleb's surgery. And now we’ve encountered another unexpected difficulty that accompanies all parents of CICU babies. As Kaleb has begun to come off of sedation he has become more alert of his surroundings it has made it much harder to leave him at the hospital. And as he becomes more conscious of his physical struggles it has is very difficult to watch him suffer our desire is to be there to comfort him.

Though we are now on the “downward slope” of this journey (and PRAISE GOD we are!) it is still quite a challenge to be patient as we wait for Kaleb to recover, especially as it is accompanied by this "two steps forward, one step back" process. 

It feels like we're at mile 15 of a marathon we have no clue will end (not that either of us have ever run one 😆). We're past the halfway point, but there's still SO much left. The adrenaline has worn off and we're starting to feel the weight of the fatigue. This week has been a tough one for us.

I was just sharing with Brittany that over this week the ordinary joys of everyday life– food, drink, outdoors, conversation– has lost its glimmer and all seems dull at first glance. In these days we cling to what we know is true. We cling onto the promise that we are united to Christ and that he will hold us fast. Even though I feel exhausted, dismayed, and helpless at moments…He holds us fast. Even when we fail…He is faithful.

We know God is watching over Kaleb and He has supplied us with more than enough good gifts to rejoice in even while our hearts are still aching with sorrow for what is not. And praise God our Savior is aware and acquainted with our griefs and is carrying us and WILL carry us through.

PRAY

• That Kaleb's lungs and heart would strengthen

• For healing of his infection and fever

• That his body would absorb more and more breastmilk and begin to put on weight.

• For divine comfort as he endures withdrawal symptoms (Psalm 36:7-9)

• For perseverance for us, to fix our minds and hearts on the glorious gospel.

• Our church is having a retreat this weekend that we will join at points. Please pray that it is a fruitful time and we are able to be present mentally and emotionally so that we can love our church family well.

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