WIERSMA FAMILY BLOG A glimpse into our lives as a family with micro-preemies. Our twins boys (Lovingly referred to as our Miracle Men) were born almost 16 weeks early. Our journey continues when our son Max was diagnosed with cancer at the age of 3. This is his story....
Thursday, June 18, 2009
Where to start...
It has been a crazy couple of days, that is for sure. Sorry for the delay in getting an update on here. I will start with Maxwell. He did not have a great couple of days. When I last posted on here he had been moved up to a pressure of 43 on the jet vent. On Tuesday he had another bad gas and they moved him to 45 and then to 47 after a follow up gas. That afternoon he had another bad gas and they moved him up to 49. Tuesday was when we also found out that he had tested positive for breast milk in his lungs via a test that sounded to me like it was called "lippy lappymacrophage," but I am guessing that is not phonetically correct. That meant that his feeding tube needed to be moved past his stomach an into his intestinal tract. They do his by blowing air down his feeding tube to force the valve at the bottom of the stomach open and then feeding the tube further down his throat. They can then test the pH of the liquid they aspirate from the tube to see if they are in the intestines or still in the stomach. Once the tube is positioned correctly, the valve at the bottom of the stomach closes and no more refluxing. We did not want Max to have to go through this, but we're in some way relieved that maybe the reflux is why he has been backsliding on the vent so much. We were hopeful of a quick turnaround on the vent pressures. What we got was a bad gas and the move to a pressure of 49. I will recap what the blood gas looks for. They primarily look for the pH of his blood and the CO2 count. An ideal blood gas is a pH between 7.35 and 7.45 and a CO2 in the 40-50 range. Most often if the CO2 is too high or too low, the pH will move accordingly. Too much CO2 makes the blood more acidic and the pH will be below 7.35, too little CO2 and the blood will be more alkaline or higher than 7.45. His gas on Tuesday night was 7.22 and 89, and that is why they went to a pressure of 49. His gas three hours later (this kid gets his foot pricked a billion times a day) was 7.55 and 36...which is WAY too good. We were excited about that change, but then he had a terrible gas again...back to 49...then good gas...down to 48...then okay gas so no change...then really good gas again, and now we are at 45. This is over a few days, but I think you get the general drift of how this delicate balance works. We are glad to see 45 again, and just the general move in the right direction. We are praying and praying and praying that this is the first of MANY good gases and the stepping off point towards coming off the jet vent for good. We are trying not to get too excited...but we want God to know that we are cool with that plan if He is!! After they moved Max's tube into his GI tract, he has been a little "plugged up." So much so that Nurse Alaina had to give him a little tiny piece of a child's suppository to get things moving. It did the trick, and she described the fallout as something similar to molten lava. Can you believe how much we talk about bathroom related topics on this blog? And to hold them in such a good light? Very bizarre. Max is still quite puffy, but his follow up head ultrasound showed no change from the last, just a bunch of benign fluid around his head and maybe just a touch inside his skull. He weighed in at 5 pounds 12 ounces tonight. Here is an up-to-date picture with his "rhino" outfit on:
Wes has had a big couple of days too. The docs actually okayed him to start "trials" off CPAP!! So he did his first hour long trial (or "wean") on Tuesday afternoon, and then again on Tuesday night. He did great and we got some good pictures of him. This kid makes me laugh...a lot.
That is the face of a child who loves his new found freedom!! He still needs to have oxygen and usually has a nasal cannula on, but Kate wanted a few pictures with just Wes...no other "gear." He is so wide awake when he gets to do his trials, which have been going so well he is up to twice a day for 2 hours, and it is just a riot for us. The nurses say that he keeps his eyes open so that when they try to put the CPAP back on, he knows when to retaliate and throw a fit. This child is not yet 37 gestational weeks old. He weighed 5 pounds 1 ounce...welcome to the 5 pound club little buddy!!
Today was the nurses favorite day...treats from Grandma Wiersma day!! I think I slipped a disk carrying the bag from the car to the NICU, and when I got there, the nurses were so excited. They said that all nurses are pigs. I said that I think all nurses are heroes. They said, "sure, whatever...now hand over the treats." The bag was quite heavy and a group of nurses said that they had to weigh if to see if it was a new record. So they found a scale...and it was!! 19.25 pounds of pure delight. Thanks Mom...we are officially the most famous people in the NICU. I had at least a dozen nurses tell me that they love you today...and so do we!!