I wanted to post a few of the details from when Malachi had his surgery August 19th, 2010. Here are some of the notes I posted on Facebook:
Entry on August 20, 2010
Dear All,
Last night was a little bit of a rough night for Malachi. He had developed some fluid in his chest cavity. They had to insert a chest tube in to drain out some of the extra fluid. I was awakened last night about 2 am, and felt led to pray for him, and found out that it was about the time they were putting in the chest tube. God is amazing!!!
We arrived at about 9 am this morning and he was doing better. He has drained off most of the fluid and his lungs look better as well, from what they saw on his chest x-ray. Dr. Philips came by and told us that his numbers look good, and as expected. The main focus is to get his pain under control, balancing the pain management with his breathing. The pain meds have an effect on lowering your blood pressure and slowing your breathing, so it makes the heart and the profusion of blood a little slower. They need to have his heart rate up and his breathing deeper, but they also need to balance keeping his pain under control. It is a very fine line with close monitoring.
The plan for today is to keep him comfortable, starting him on some foods, getting his oxygen saturations and blood pressure higher, and the drainage of the fluid from his chest cavity and lungs.
I was praying this morning for him and my mind went to the following verse in Psalm 121. I have to remember that this is a marathon, not a sprint, and that we are going to have up days and down days. I thought about how we are in the valley looking up at the mountain. It is so hard to see Malachi in pain and upset, but I try to remember that the end result will be better for him in the long run. I also love that this verse talks about the Lord not slumbering! We were so tired last night, and continue to be, but our Great God was awake all night with Malachi keeping watch and protecting him.
Thanks again for the prayers and support. We are so blessed!
Love to all, April for all
Psalms 121:1-8 "I will lift up my eyes to the mountains; From where shall my help come? My help comes from the LORD, Who made heaven and earth. He will not allow your foot to slip; He who keeps you will not slumber. Behold, He who keeps Israel Will neither slumber nor sleep. The LORD is your keeper; The LORD is your shade on your right hand. The sun will not smite you by day, Nor the moon by night. The LORD will protect you from all evil; He will keep your soul. The LORD will guard your going out and your coming in From this time forth and forever."
Entry on August 21, 2010
Dear All,
I am writing to you very encouraged this morning! Malachi is doing much better than yesterday. We had an up and down day yesterday, as Malachi's breathing was pretty shallow (about 12 bpm) and his oxygen sats were in the high 50s - low 60s. The Doctors were trying to get a balance of pain meds with getting his breathing under control. The narcotic pain meds mess with his respiratory function, and so it was making his sats lower. They adjusted his pain meds as well as his sedation to help with the pain and respirations.
As of last night when we left he was doing better, but still not great. Overnight he was waking up a little upset, but was breathing better and satting better.
When we arrived this morning he was pretty upset (more so with being in bed, than pain), but satting more in the high 70s low 80s and his respiratory rate had increased to about 20 bpm! All of his levels are normal, except for being a little on his potassium. His chest xray showed that his chest cavity is draining off the fluid, and his lungs are a little fluidy, but getting better.
The plans for today are getting him back on his feeds, weaning him off of the nitrous oxide, taking out one of his chest tubes (two will still remain), and giving him something to help him go "number two" :o), (he has actually had a lot of discomfort from that, and is why we were up all night before his surgery!). Today seems much more hopeful and Malachi is doing well, for just having major heart surgery TWO DAYS AGO!
Thanks all for the prayers and encouragement offered to us! We are so blessed to have so many friends, family, and Church Family to surround us! Praying for a better day today! So far so good!
Love and thanks, April for all Psalm 56:3-4
Entry on August 23, 2010
Dear All,
I wanted to ask for specific prayers today. (I hope I am not sending out too many updates!) Malachi is desatting again... (70 - 72%). He is doing well, but the doctors are trying to figure out why his oxygen saturations are so low. They are putting Malachi on a med that helps to dilate the vessels in his lungs. The doctors think that he might have too much pressure in his lungs, so the blood is shunting out through the fenestration (hole) that they put in between the vessel and his heart. Which basically means that he is not pumping enough blood to his lungs. They are also weaning him off the oxygen. He is also getting an echo done to check on heart function.
He is doing well, considering, and honestly has such a great attitude. He is such an example of "being content in any circumstance!" Everyday is up and down, we are not dealing with major ups and downs like in the beginning of his life, but are still on the emotional roller coaster. We are getting good sleep, but still end up feeling completely exhausted at the end of the day. We are relying on the Lord for our strength! (Phil. 4:13)
I don't want to be a person who sounds like we "have it all together, quoting all the 'spiritually mature' phrases." In all honesty I would rather not have my Son in the hospital dealing with heart issues, but that is the path that was chosen for us, and Malachi was formed the way he was by God. (Psalm 139:14) I take comfort in the fact that My God loves us, and loves Malachi more than I ever could. I truly believe that now. If you would've asked me two and half a years ago when this journey began, I don't think I really believed it. I had a lot to learn about My Creator, outside of the "classroom." It was truly living out and experiencing the hard things in life, that made my relationship with Him that much more stronger. I used to get pretty upset at the circumstances, but are realizing more and more that it wasn't supposed to be this way. OUR SIN ruined everything, and God my Father, is with us all the way! ( Hebrews 13:5b) So I am trying to trust more and more and take things one day at a time. (Matthew 6:34) As I had said before, Malachi and Philip truly are the heroes in all of this. They have been an example to me of persevering!
Thanks again for the prayers. We are confident that all will work for the Lord's good, whatever that may be, and as hard as that is to trust sometimes! (Rom. 8:28)
Love, April for all
Entry for August 24, 2010
Dear All,
Things are good. Malachi is down to needing about 40% oxygen and 2 liters of flow. (Improvements!!) He is also been weaned off of his millrinone (iv blood pressure med) and they are weaning down his sedation meds. So he is a lot more awake and alert. He is playing, but still gets pretty tired.
The two biggest requests I have for today is; prayer that the Lord will help rid his pleura space around his lungs of the fluid. (This is why he still has the chest tubes in, and they cause a great deal of discomfort!) The doctor told us it could take up to two weeks for the fluid to completely drain!
The second is for the panic attacks Malachi has on occasion. It is very scary and overwhelming. I don't help because he senses my fear and gets even more panicked. (I had a good cry about it last night!) Pray that the Lord will calm him and that he will relax and breathe deeply... his oxygen saturations get very low and it takes him time to recover!
Philip and I are holding up pretty well. We both go back and forth each day on the headaches. (We are both prone to them.) I had my first migraine last night, and am praying Philip doesn't end up with one! I did get a massage they provide for the parents in the hospital, and that helped a lot! We appreciate all added prayer for strength. We were definitely expecting a long haul, but (I) forgot about the weariness and drain with the emotional roller coaster. We are trusting and hoping Malachi's health will be completely restored.
Thanks again for all the prayers and encouragement! We love you all!
Love, April for all
Isaiah 40:31!!!!!!! The waiting on and in Him brings about the strength!
Entry for August 25, 2010
Dear All,
Sorry I took so long to get this out. Today has been a little tiring. Yesterday evening into last night was filled with vomiting and a sleepless night! Malachi was started back on his milrinone yesterday evening, due to showing signs of problems with his cardiac output. (Low heart function.) When the heart has low cardiac output the heart starts to only pump blood to the "important organs" i.e. lungs, brain, etc... The stomach and intestines tend to be the low end of the output. (So began the vomiting.) They did a blood test to determine if that was going on, it was. The milrinone helps with the heart function, and the doctors seem to think that the weaning of the med so quickly actually didn't give his heart time to adjust. So they are "starting over" so to speak.
The surgeon and the other doctors said that Malachi looks good. His numbers and breathing all are where they should be. The chest tubes are also draining way less fluid, and the surgeon said that if he puts out less than 30 ccs in a 24 hour period, the chest tubes will come out. He also said that it will allow Malachi to breathe a little easier and his oxygen saturations will improve.
We also found that the fenestration (hole) that was put in during surgery, has actually kept Malachi from being a lot worse. If he didn't have the fenestration the blood would not be going into the heart to keep the blood circulating, so he would be very sick! We are thankful that the Lord gave Dr. Philips the wisdom to put in the fenestration so that Malachi would not be worse!
So prayers for tonight are that Malachi will SLEEP! He has been so exhausted all day! He just needs to get some good rest, and so do Philip and I! We are staying in a parent room tonight at the hospital, so we will be just down the hall if Malachi needs us! Pray he doesn't and just sleeps!
He is getting there, health-wise. He is still pretty weak and unhappy to be in the CTICU, but is improving! Malachi has always moved along at his own pace, so we figured this would be a long haul. We are thankful that things are looking pretty good considering.
We are also so thankful for all the meals, prayers, gifts, phone calls, emails, hugs, and love! We are so blessed!!!!!!! It is so hard to express how truly thankful we are! Everyone has done so much for us in so many ways! Thank you!!! Thank you!!!!
Trusting and resting in His arms,
April for all
Proverbs 3:5-6
Entry for August 26, 2010
Dear All,
We have a praise!!! I need to remember when things are good! Malachi got his last two remaining chest tubes out today! He seemed to breathe a little easier. He was playing, but is still pretty tired. He only sleeps in increments of 20 minutes. So that is a request for him, that he will sleep!!!!
The discouraging news was what the surgeon, Dr. Philips told us was possible. He did say that Malachi looks good and he is where they expect him to be. They will try weaning him again off of the Milrinone tomorrow (Friday, August 27th). We are hoping and praying that his heart will adjust to the change and his lactate will stay normal and the heart will function properly. The problem is that Malachi's oxygen saturations are very low (high 60s - low 70s, where they want him more like mid 80s to low 90s). Dr. Philips said that if Malachi's oxygen saturations don't improve that they will have to take him back to the Cath lab and close his fenestration (the hole), due to it causing the blood to direct back into the heart, instead of his lungs. So a BIG REQUEST is that coming off the Milrinone will cause two things, that his heart function will stay good, and that it will allow the pressure in his heart to go up, and the pressure in his lungs to go down. (So the blood will shunt the right direction.)
It is a lot of unknowns and uncertainty, but we do know that God is in control, and holding all our tomorrows. I do pray His will be done, but I am not afraid to tell Him, in detail, what I would love to happen! He does know what is best, and still listens to my groaning!
Thanks to all of you who have stood with us and by us thru all of this trial! We know that Malachi's life has been used by our Lord in so many ways! We are so blessed and honored that we get to be his parents! He is such an amazing kid! Love and hugs to you all with every bit of our being!
Trusting and Hoping,
April for all
Psalm 34:18 - "The LORD is near to the brokenhearted (Malachi and us!). And saves those who are crushed in spirit."
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