Friday, April 28, 2006
The appointment was very long...with many tests and xrays. They did a urine culture, and for the men out there, you know how unpleasant that is! They had to try multiple times and Max was NOT happy, not at all. Results will be back today or tomorrow.
The doc also wanted xrays of his abdomen to research any possible blockage issues. FORTUNATELY, nothing was structurally wrong...just A LOT, A LOT, A LOT of gas. Yikes! And what do you think happened AGAIN with the xray technicians? Yep, different people, same story.
"You can sit him here."
"Nope, sorry, before we get started let me explain, Max absolutely cannot sit by himself. He has a very weak torso due to CHARGE, his genetic disorder. These kiddos have little upper body muscle tone."
"Ok, then I will sit him in this device here...that should work."
"Nope, again sir, sorry but that will not work...he CAN NOT sit up. He can barely hold his head up for just a few seconds."
And then with a very inquistive look, "How old is he?"
"He is 10 months old...yes I can tell you are confused. As I mentioned before he has a genetic disorder and spent a long time in the hospital and he is very delayed."
FINALLY...after much more back and forth, I showed them how we always do the xrays and they followed my lead. At least this time I was prepared better...but it still is not fun having to walk people through all of Max's issues.
Then because Max was feeling so bad and lethargic, he just lay there and it was soooo sad. They kept saying what a good boy he was, but I was thinking about how sad it was that he was getting so used to being handled and tested that this didn't even bother him. It broke my heart...you had to be there, but it was definitely a very emotional xray experience.
Let me say though that the technicians were very, very kind...they didn't mean to hurt my feelings or be frustrating. They just couldn't understand why Max couldn't sit up...apparently they must not deal with many special needs children. But hopefully they now have a better grasp of the challenges after our discussion.
ANYWAY, his fever continued throughout yesterday and a little into the night but this morning it was down...not down to normal, but not considered a "fever" anymore. I *think* Max may be on the road to recovery. Perhaps, just perhaps, I can hope for sleep tonight...maybe three or four uninterrupted hours? It's amazing how mommy loves get you through though, isn't it??? :)
It is an absolutely beautiful day here in Bellingham and I think I may take Maxwell outside for some sunshine. Always makes me feel better...hopefully it will do the trick with him too!
"Mom, enough already...all I did was go poopy! Well, I guess I'm glad you didn't take a photo of the actual diaper!!!"
Thursday, April 27, 2006
It was another fun filled night in the McKinley household...when will the fun ever end???
Max whimpered and cried throughout the night with severe gas pains and a fever of 102. The fever has yet to subside, so we are heading to the doctor's this afternoon for more tests, xrays, etc. The fear is that perhaps something is going on with his lungs or he has a bladder infection, etc. etc. etc. His oxygen needs are all over the board, so who knows what is going on there. He keeps us guessing, that's for sure. It was such a sad and exhausting night. Nothing seemed to make him feel better. Usually if I hold him, all is well, but not last night. He was a very uncomfortable, unhappy lil' kiddo.
Then this morning...after pretty much a sleepless night, I check my email while I am on hold with the doctor's office. And here comes another irritating email from my soon to be ex arguing that he cannot afford to pay what I need to take care of Maxwell. He will only provide a limited amount of alimony unless the judge forces him to do otherwise. So it's not like Max and I will be on the streets, but I will have to use our divorce settlement (the businesses that I built) to pay bills...and eventually that money will be gone. It just isn't fair...he continues to live the same life he always has, yet I am supposed to have no life and just "get by" on very minimal income. It's like he just can't grasp the concept that we MUST find a way...you just can't say "no." What does he expect me to do? This is our son and he is our responsibility. He's not even wanting to discuss different options.
I'm so tired of wasting energy and anger on this divorce...my efforts need to be focused solely on Maxwell. We sent him a settlement offer last week in hopes of just getting this over and done. I had learned he actually moved in with his girlfriend just a few months after leaving me, so I was hoping that perhaps he would be motivated to settle so he could move on with marriage plans with her or whatever. I am probably giving more details than necessary (trust me there are much more but not appropriate to include here!) but I am just so irritated this morning. Anyway I was hoping he would agree with me just to find a compromise and get this settled...but nope, he insists we will fight it out in court and I have to fly back to WV. Have I stressed just HOW irritated I am with this man???
He has not even asked about Maxwell for nearly five months...he visited him for a few days in early December and we haven't heard from him (regarding Maxwell) since. A million and one emails and calls about the divorce, our businesses, financial issues, etc. but absolutely nothing about Max. So odd. I keep hoping that something will trigger a fatherly instinct in him to care for him and love him...I even give him heads up about medical issues but he never responds. I just don't get it. I have tried to keep him included, but he apparently just does not want to be. How in the world could you stay away from this precious lil' boy? How could you not set aside your differences and get involved in every way possible?
Sorry for going on and on, but some days I am just stunned with his behavior and I feel like I am being betrayed all over again. We don't deserve this treatment...period. Max and I certainly have done nothing wrong and yet we are the ones getting punished.
Well, Max's speech therapist will be here any minute, so I must run...hopefully Maxwell is up to at least a little therapy. We'll see! At least it will be a good distraction from this morning's irritation. :)
Wednesday, April 26, 2006
Max had his EEG (to test for possible seizures) on Tuesday, and the process went fairly smoothly. He wasn't very happy with all the preparation for the test...lots of work to get the 25 probes attached to his head and he was very insistent on pulling them off. (The appointment was over three hours long!) Plus he was a lil' cranky because he was so tired, which was our plan so that he would sleep for the EEG. (I did lots of therapy and play with him beforehand to wear him out!) Any issues with the brain processing tend to be easier to spot during sleep. There were lots and lots of sad/annoyed tears, but fortunately our plan worked and he feel asleep near the end of the preparation just in time for the test.
We are supposed to have results by the end of this week or beginning of next. The neurologist will then either bring us back in for another appointment or review the results with Max's PCP.
Later that day Maxwell had an OT appointment. He is having a difficult time holding his head up. He will try but after a second or two, he gets very tired and practically collapses. So we are trying every different method, toy, therapy device available to help him.
Well, we found a toy that would actually hold his interest and keep his head up for a few seconds...MY CAMERA! I was going to take a picture of him but then he reached out for it and was very interested. So I just let him have it and put his finger on the button and out came these photos. Do we have a photographer in the making or what??? These are some of my absolute favorite photos of all time!!! :)
And as an added bonus, his wonderful therapist (we think you are great Eileen!) was very happy that he was able to hold his head (with her assistance) and reach for something at the same time.
Tuesday, April 25, 2006
Yes those are shadows on my face...the sun is out in Bellingham, the sun is out! YAY! Thankfully Mom remembered my hat...that sun is beautiful and feels great, but I need to protect my eye!
Mommy, I love that you love me so much...but really, are we outside for a photo shoot or for yardwork??? :)
Another issue that came out of yesterday's doctor's appointment is Max's lack of weight gain. He has not gained (and has actually lost a few ounces) for over a month! This is incredibly frustrating because I have been working with both the PCP and pulmonary nutritionist and we have kept very close tabs on his feeds. This can be a major issue with CHARGE.
Max's doctor didn't seem overly worried at first, but he was a bit concerned once I had him look through the file and pointed out the trend. So we are increasing his feeds, but I have been doing that so religiously that I am wondering if there is something else going on. He does breathe fast and he is much more active recently...so these both burn a lot of calories. And there was mention before from the endocrinologist about a possible growth hormone deficiency.
I am talking with the nutritionist again this morning to get her feel on the situation...we'll see.
Max may always be a small guy, but he sure is mighty!!!
We were there for hours and hours because he needed several chest xrays and there was a long wait. And of course Max garnered much attention from the other patients. There was an older gentleman that just kept staring at us and all the equipment. He wasn't trying to be rude, he was just very curious! I forget sometimes what a sight we are!!! :)
Max probably has not had a chest xray for over a month and let me tell you, it was MUCH easier last time. He showed his strength yesterday and refused to lay still even with two of us holding him down. It was quite the fight to wrestle this lil' baby! But finally they managed to get decent shots...and fortunately no pneumonia, serious aspiration, etc. Same chronic lung disease with just a slight worsening in one area...but nothing terribly new.
The most difficult part of the experience...in addition to having to restraining my crying baby (not fun at all, I had tears in my eyes too!)...was that this particular technician had not worked with Max before and could not grasp the concept that Max can not sit (YET). She kept asking, are you sure he can't? I'm like...hmmmm yes, I'm sure! She must have commented on that 3 or 4 times saying how much easier that would be. I'm thinking, yes A LOT of things would be easier if he could sit (or even really hold his head) but that's just not our reality right now. :)
Fortunately yesterday and over night he had no more vomiting episodes but his oxygen requirements are higher. He had a million desats last night but half the time they were because he moved his cannula to on top of his nose. That's his funny lil' trick. I kept him on Pedialyte most of the day and added in regular feeds at a very low rate over night. For now, we are halting any "oral feeding trials."
We leave in about an hour for Max's EEG. They said to bring his favorite bottle to keep him relaxed...which made me smile. For those of you who don't know, Max cannot drink out of a bottle...only through his Gtube. But the nurse of course would not know that...she was just calling to prep us for the procedure.
Anyway they said we would be there for several hours and hopefully Maxwell cooperates! We are trying to keep him very active this morning so that he falls asleep or at least lays still for the test. I don't know if we will have any results today. I think I will have another appointment with the neurologist once he has a chance to thoroughly review the results.
Monday, April 24, 2006
So a perfect day, but a difficult night. As Max went to sleep, he required much more oxygen than usual to keep his sats up. I was very worried that perhaps I have been pushing the feeding too much (which I will post about another time) and he had aspirated. I was very disappointed because I thought we were making some real progress. However, that finally leveled off...but then I woke up around 3 am to Max whimpering and shortly afterwards, he started to vomit. This continued off and on throughout the night. It absolutely breaks my heart to hear him so sad and in such pain.
I almost took him to the emergency room last night because there were some traces of blood in the vomit, but that subsided and he calmed down shortly after. Mom just got him to sleep while I ran to the store for Pedialyte (a kiddo with a gtube is always at risk for dehydration when sick, so you have to stay very on top of the fluid issue) and now I am waiting for my doctor's office to open to see what they want to do.
On top of being scared for Max right now, I am also bummed about the change in our morning plans. We were planning on attending a special needs baby group this morning for the first time...and we were sooo excited. Another mommy and her special needs baby (adorable and amazing Dylan has Down's Syndrome: dylanupdate.blogspot.com) who I met at Children's attends this group and has been raving about it to me for months. I was so happy that Max seemed stable enough to finally attend...I guess not quite yet! The babies and mommies do the normal "baby group" activities but they also have a PT, OT and speech therapist in attendance who help each child with different skills. So we get an extra dose of therapy while having fun and meeting other babies. Well it will be something to look forward to another time!
So I have another hour to wait until I can talk with the doctor. Tick, tock, tick, tock. I never like talking with the ER or on call doctor because to explain all of Max's issues is way, way, way too frustrating and confusing. I remember the first time I called the on call doc and it was so funny when the nurse called me back. I just assumed she had reviewed Max's file so I am answering questions on and on...then she asks, well has he ever been hospitalized before, any surgeries, any issues, any medications, etc. I told her to get a piece of paper and start writing.
ANYWAY, that's Max's night in a nutshell. I'll try and write later when I know more. Never a dull moment around here! :)