So much has changed with Jackson recently! I again apologize for my laziness in getting the blog updated.
Monday night was a little rough for our boy. His Fentanyl drip was turned completely off (the medication that was keeping him sedated and preventing him from gagging on the tubes in the back of his throat). He really didn’t like the bili-mask that was over his eyes all the time. I’m amazed at how much he likes to look around. Anyhow, a combination of being blinded and gagging on the ET tube was a little to much for him to handle. He would try to cry, but since he has a big plastic tube down his trachea it would just over-breath the ventilator and his CO2 would get really low. It was pretty tough to sit and watch him deal with that. The resident PICU doctor that was on was kind of retarded. She didn’t understand why I thought it would be good to sedate him or pull the tube like was originally planned. Needless to say, I was very frustrated with her. I gave our little guy a blessing and Megan and I went home pretty sad and depressed.
The next morning we got to the hospital and found out that they ended up sedating him, by the order of the attending physician. Sometimes I think doctors are too smart for their own good. In this case, I think the doctor forgot there was a sick miserable little boy behind all those tubes and wires. From there on out it has been pretty smooth sailing. The PICU fellow (a better doctor than a resident) that came on Tuesday morning was awesome. Both Megan and I have really enjoyed her.
On Tuesday Jackson was extubated (his breathing tube was removed). He still had a few periods of apnea where his oxygen saturations would dip a little lower than anyone would like. The nurses said that everyone was a little perplexed on how to fix it, so their solution was to put him back on the nasal cannula at a very high flow rate (7 lpm). That is super high for an adult, let alone a little baby. The thought was that it would keep him awake He had enough oxygen running though his nose that when he opened his mouth a little breeze would flow out. His little nostrils would flare when he closed his mouth. It was pretty funny.
He did okay with that throughout the day on Tuesday, and early Wednesday morning the Milrinone was completely turned off, and his oxygen was turned down to a normal flow rate.
Throughout the night on Monday and Tuesday night Jackson occasionally would go into a weird heart rhythm. Basically when the heart get’s irritated because of an oxygen or an electrolyte deficiency the heart beats in a weird erratic fashion called pre-ventricular contractions and/or pre-atrial contractions. They did some chemistry tests and found that the electrolytes in his blood stream were a little “off” so they got that squared away and the heart beating normally again.
On Wednesday afternoon our little man was transferred to a step down unit on the third floor. He’s still on continuous cardiac monitoring; but he is without arterial lines or chest tubes of any variety. He still has a peripheral IV saline lock in his foot, but that should come out in the next day or two. He’s a pretty happy camper.
As of today he’s still on tube feedings via the NG tube, but he is handling those like a champ. He is still on a very small amount of oxygen by nasal cannula; like 0.12 lpm. I didn’t even know oxygen went in that small of an increment. Turns out it really helps him though. They have been trying to ween him off of it by bumping it down to 0.06 lpm; but he de-saturates very quickly. He may go home on oxygen and the NG tube. The plan now is getting him home on Sunday! That would be flippin’ sweet!
Both Megan and I are very tired of being away from home. I haven’t seen Rexburg in almost 4 weeks; and neither has Megan. My Dad and I have a good sized renovation project to work on at the house we are renting. I would really like to get started on that.
One last little thought…
I speak for both Megan and myself when I say thank you. Thank you to everyone who has thought and prayed and smiled for our little Jackson. I can’t begin to express the gratitude and happiness I feel when I think of the hundreds of people who have called, emailed, texted, visited and written us with concern for our situation. It hasn’t been easy by any stretch of the truth; but our family and friends have made it bearable. Thank you so much; we love you!
Some pictures of our journey the last few days…
|First time being held after surgery. Megan was super happy.|
|Jackson, this morning. Pretty happy guy.|
|Me and my little man|
|Megan and Jackson|
|I saw this in target, and thought “yeah, a week after your arterial switch.”|