It's been a long time since either Tyson or I have updated this blog with any type of information. There has been a lot going on each day, but the closer it gets, the more pain he is in, the weaker he becomes and the longer it goes; the harder it becomes to put anything into words.
Garak has been in a lot more pain then he previously was in. Due to his brain damage he has been 'storming'. This basically is a 'storm' of electrical activity which interferes with the brains' autonomic functions. This is heart wrenching to watch our sweet baby go through. Garak's heart rate jumps to above 180+, his temperature spikes really high and he postures a LOT (posturing...meaning his limbs go extremely stiff and his muscles start to spasm). After the spasms his whole body begins to shake as if he were shivering, but it is more intense and lasts a long time. The neurologist say this is an extremely painful process. Due to this, we have increased his meds over the past few weeks. When we first came home, we injected Garak with hydromorphone (similar to morphine) and lorazepam when we felt like he was agitated or in distress. Within a week we increased to every 3-4 hours. Over the past two and a half weeks we increased to almost every hour. July 18 we put a medication pump on him that continually pumped both meds into him continually. Since July 18 we have increased the amount of meds we continually give him to 5x the amount we started with.
Last Tuesday through Friday we thought were going to be his final days. The hospice nurses told us once his oxygen levels dropped to the low 70s and into the 60s he would pass away very quickly. Tuesday afternoon his levels dropped to the low 60s high 50s. The hospice nurse took vitals and told us that he had hours to live. I called my family to have them come say their final goodbyes. While a couple of my sisters were there his oxygen level went down to 18 and we thought for sure it was going to be his last moment, but he rebounded. Later that evening once everyone had left Tyson, me and the boys sat around Garak just waiting. All night we watched the monitor and held Garak and his oxygen levels remained extremely low. At 4am that morning his heart rate decreased to the 60s and again we thought he was going to go, but again he rebounded and his heart held steady. During the next day, Wednesday July 18, he had 3 more events where both his oxygen levels and heart rate dropped off the monitor. For at least 60-120 seconds (which felt like like an eternity) we thought he was gone; we thought he had taken his last breath and that his heart had given out. He then came back with a huge breath and his heart started beating again at the normal rate. For the next 2 days his oxygen level remained extremely low, between 1 and 50. Everyone thought he would go at any time. On Saturday, he once again rebounded and his oxygen level and heart rate went up to normal.
With Garak holding on for so long and fighting so hard it makes me wonder and question everything and everyone. The things I know for certain is that I love my sweet baby boy more than words could ever state, I do not want him to be in pain, and I want to do whatever is best for Garak! I've had thought about feeding Garak so many times, wondering if he would want to stay here with us or if he would be happier in a perfect heaven. This past Monday we had a pediatric specialist come out and Tuesday we had a doctor come out to discuss the pros and cons of feeding him (again). Each day I would decide to do the opposite of what I decided the day before. On Wednesday I realized the reason I continue to go back and forth on whether we should feed him or not is because it is an IMPOSSIBLE decision, and it is one that I can not make. I had an amazing friend tell me because this decision is so hard for me, I should lean on my husband and what he thinks would be best for our sweet Garak and to use him as my crutch. So, thank goodness for an amazing husband who has been my rock during the worst month of my life; and who wants what is best for our sweet baby and is trying to do what Garak would want us to do.
On Monday, Garaks central line (the line we were injecting meds into) was pulled out. The nurses saved it very coming completely out and we were able to use it for a few more days. Yesterday, the few millimeters that were left in of the line came out, this was very disheartening. We had 3 options at this point. First, we could go to PCMC to have a radiologist insert a PICC line. We weren't even sure this would work since he is so dehydrated. Second, we could put a line in underneath his skin where the meds could absorb into his body.
Normally they do not put these types of lines into babies due to their skin differences, but because Garak has no fat to absorb the meds we were more concerned about the meds not absorbing and clotting then anything. Third, we could do rectally or orally but since he can not swallow and his intestines had shut down neither of these options were very good. We opted to go with the second option, opted out of putting Garak through a medical procedure, hoping the lines would work. One of his nurses came and inserted 2 lines into both his legs, one for each meds, unfortunately we discovered today that one of the lines were clotting and not absorbing. At this point, the only option we had left was to go to PCMC. So, this afternoon we went and after many attempts on his arms and legs they finally were able to place a PICC line in his jugular vein in his neck. Normally, they do not allow parents in the radiology room (or the Jazz Room, which will explain the Jazz bear on the wall of the picture below) while they place PICC lines. Since PICC lines are in one of the four main veins that lead directly into the heart, they need to keep the room clean and sterile; but due to our circumstance and the fact that Garak could have passed while they were trying to place the line they allowed both Tyson and I in the room. Once we pulled both the lines out of his legs we noticed the other line also was clotting and not working.
Since Thursday Garak has declined on how he looks and sounds. His lungs are very 'junky' sounding and nurses continue to tell us he has what they call the "death rattle". The nurses are not giving us predictions on whether or not Garak will make it through the night any more. They all feel really bad that they continue to tell us he has hours left when he continues to hold on for days, but both Tyson and I would rather know the worst possible scenario and be prepared. We now know the Garak defies all odds an is one strong amazing little boy!! One nurse was very sweet Thursday night and said 'In most cases we would be calling the hospice nurse that evening due to Garak passing, however, this is Garak and Garak is on his own timeline." So, until Garak decides it is his time to go, we will continue to hold him and treasure these moments we have with him!
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